This is the end of this blog.
I have starged a new blog at http://bevlombard.bogspot.com/ about my upcoming trip to the Gambia.
Would love your prayers for this new adventure too.
Saturday, May 7, 2011
Sunday, April 17, 2011
Funeral Service for John Lombard
The funeral service for John will be held a Christ Church, Bolton ON, on Tuesday, April 26, at 1pm
The church is on Nancy St - simply come into Bolton on Hwy # 50 - turn West on to King St and then North on to Nancy St. Church is on the second church on the right hand side.
In lieu of flowers donations can be give to WEC International (Gateway student care fund) 37 Aberdeen Ave., Hamilton ON L8P 2N6 or the Parkinson Society British Columbia
Suite 600 - 890 West Pender Street, Vancouver, BC V6C 1J9
or VMTC Canada.
The church is on Nancy St - simply come into Bolton on Hwy # 50 - turn West on to King St and then North on to Nancy St. Church is on the second church on the right hand side.
In lieu of flowers donations can be give to WEC International (Gateway student care fund) 37 Aberdeen Ave., Hamilton ON L8P 2N6 or the Parkinson Society British Columbia
Suite 600 - 890 West Pender Street, Vancouver, BC V6C 1J9
or VMTC Canada.
Article from the Deep Cove Crier
Gratefully Remembering The Rev. John Lombard
April 16, 2011
By the Rev Ed Hird
The Rev. John Lombard helped many people become ready for the final transition of life. He did not let the difficult disease of Parkinson’s defeat his feisty spirit. John was ready to go, ready for the final phase of life on earth. John lived a full life, both in sickness and health.
John was a courageous, humorous, thoughtful, and compassionate man. It was a privilege to get to know John on a personal level. At his memorial service, many people shared about the deep humility that John displayed. To know John was to love John.
His dear wife Bev stood faithfully with John ‘for better for worse, for richer for poorer, in sickness and health’ in their forty-five years of marriage. During the difficult last phase of John’s life, Bev kept an online blog where she shared daily about her life with John. Bev has been a great inspiration to many by the way that she has not let John’s chronic illness defeat her. Her deep faith kept her going, because she knew that she was not alone.As my honorary assistant priest at St. Simon’s North Vancouver, John was a tremendous help, covering for me when I spoke at various conferences. In 2004 when I had an opportunity to take a three-month sabbatical, John ‘held the fort’, enabling me to be deeply refreshed and renewed. Because of John’s covering at St Simon’s NV, I was able to travel to eighteen cities across Canada with 250 francophones and anglophones in a journey of reconciliation called La Danse.
In Nov 2004 our 10:30am contemporary service moved, because of overcrowding, to the Maplewood School. This was made possible because John covered for me at Maplewood School until I could drive there from Deep Cove after our 9am traditional service. John’s loyalty was a rare gift to me. I knew that you could depend on John through thick and thin. John was a man of his word. His yes was yes and his no was no.
John was not a yes-man. Many times when John saw a way that we could improve, he would freely share with me his insights. As his voice became weaker because of Parkinson’s, I had to listen very carefully. His mind remained sharp, even as his body faced serious challenges. I remember John’s helpful suggestions about how we could improve the quality of reading scripture on Sunday morning. His ideas resulted in a very informative Saturday morning Readers’ Workshop led by his wife Bev to about twenty of our readers. There was a remarkable strength in John’s spirit, even in the final days of his being in hospice. The last time I saw John, he really enjoyed viewing my iphone photos from our recent holiday in Hawaii.
One of my strongest memories of John was at the annual BC Christian Ashram retreats where John would tell funny stories and play harmonica during the talent show. John was a very gifted harmonica player who with his quirky sense of humour intentionally played the wrong harmonica notes in one song. John did this with a twinkle in his eye.
Born in Montreal and raised in Windsor Ontario, John spent most of his ordained ministry in southern Ontario. Instead of merely retiring, John and Bev moved to Greater Vancouver to become missionaries with WEC international. They served at the Gateway Intercultural Training Centre and led short-term mission trips to Fiji, Guatemala, and South Africa. After St. Simon’s NV adopted John and Bev as part-time missionaries, John wrote wonderful updates about how God was using them in raising up young leaders around the world. As a member of the national leadership team for the Anglican Coalition in Canada, John co-ordinated prayer initiatives for the Coalition, sending out regular prayer updates. As a leader in VMTC, John prayed deeply for healing of others in body, mind and spirit. He gave and gave and gave. We miss John deeply. But we are so grateful that he is now with Jesus in his nearer presence.
Reverend Ed Hird, Rector
St. Simon’s North Vancouver
April 16, 2011
By the Rev Ed Hird
The Rev. John Lombard helped many people become ready for the final transition of life. He did not let the difficult disease of Parkinson’s defeat his feisty spirit. John was ready to go, ready for the final phase of life on earth. John lived a full life, both in sickness and health.
John was a courageous, humorous, thoughtful, and compassionate man. It was a privilege to get to know John on a personal level. At his memorial service, many people shared about the deep humility that John displayed. To know John was to love John.
In Nov 2004 our 10:30am contemporary service moved, because of overcrowding, to the Maplewood School. This was made possible because John covered for me at Maplewood School until I could drive there from Deep Cove after our 9am traditional service. John’s loyalty was a rare gift to me. I knew that you could depend on John through thick and thin. John was a man of his word. His yes was yes and his no was no.
John was not a yes-man. Many times when John saw a way that we could improve, he would freely share with me his insights. As his voice became weaker because of Parkinson’s, I had to listen very carefully. His mind remained sharp, even as his body faced serious challenges. I remember John’s helpful suggestions about how we could improve the quality of reading scripture on Sunday morning. His ideas resulted in a very informative Saturday morning Readers’ Workshop led by his wife Bev to about twenty of our readers. There was a remarkable strength in John’s spirit, even in the final days of his being in hospice. The last time I saw John, he really enjoyed viewing my iphone photos from our recent holiday in Hawaii.
One of my strongest memories of John was at the annual BC Christian Ashram retreats where John would tell funny stories and play harmonica during the talent show. John was a very gifted harmonica player who with his quirky sense of humour intentionally played the wrong harmonica notes in one song. John did this with a twinkle in his eye.
Born in Montreal and raised in Windsor Ontario, John spent most of his ordained ministry in southern Ontario. Instead of merely retiring, John and Bev moved to Greater Vancouver to become missionaries with WEC international. They served at the Gateway Intercultural Training Centre and led short-term mission trips to Fiji, Guatemala, and South Africa. After St. Simon’s NV adopted John and Bev as part-time missionaries, John wrote wonderful updates about how God was using them in raising up young leaders around the world. As a member of the national leadership team for the Anglican Coalition in Canada, John co-ordinated prayer initiatives for the Coalition, sending out regular prayer updates. As a leader in VMTC, John prayed deeply for healing of others in body, mind and spirit. He gave and gave and gave. We miss John deeply. But we are so grateful that he is now with Jesus in his nearer presence.
Reverend Ed Hird, Rector
St. Simon’s North Vancouver
Thursday, April 14, 2011
Thursday, April 14, 2011
The memorial service for John will be held tomorrow, April 15th at 2pm at the George Preston Arena (208St and 42nd Ave in Langley BC.
The funeral service will be held in Bolton Ontario sometime in the week following Easter. Details are not yet arranged.
The funeral service will be held in Bolton Ontario sometime in the week following Easter. Details are not yet arranged.
Tuesday, April 12, 2011
A Life Well Lived
John passed away just before noon today, April 12, 2011.
I got to the Hospice just before 11am and knew as soon as I saw him that it would not be very long. He was sleeping but working so hard to take each breath, and you could hear what they call the "death rattle" between each breath.
I was able to pray with him, read scripture, tell him how much I love him, and thank him for 45 years as a faithful and wonderful husband.
One of the nurses came in and was with me when his breathing just slowed down and finally stopped. It was very peaceful.
I called Margie and she came over to be with me and we just sat with him for awhile. Then I packed up his things and came home.
I have not talked to the funeral parlour yet so I do not have any details at this time.
Actually I intend to have his body cremated and have a memorial service for him in Langley and then return to Ontario for the funeral and burial. But beyond that I do not have details.
Thanks to every one of you who have given us such support through your love and prayers. Each one of you has been a blessing to us.
I got to the Hospice just before 11am and knew as soon as I saw him that it would not be very long. He was sleeping but working so hard to take each breath, and you could hear what they call the "death rattle" between each breath.
I was able to pray with him, read scripture, tell him how much I love him, and thank him for 45 years as a faithful and wonderful husband.
One of the nurses came in and was with me when his breathing just slowed down and finally stopped. It was very peaceful.
I called Margie and she came over to be with me and we just sat with him for awhile. Then I packed up his things and came home.
I have not talked to the funeral parlour yet so I do not have any details at this time.
Actually I intend to have his body cremated and have a memorial service for him in Langley and then return to Ontario for the funeral and burial. But beyond that I do not have details.
Thanks to every one of you who have given us such support through your love and prayers. Each one of you has been a blessing to us.
Monday, April 11, 2011
Monday, April 11, 2011
Each day seems to bring new challenges. Today John had developed a lot of congestion on his chest. It sounded much worse than anything he has experienced before. He was coughing a lot but not bringing up much mucous. Every breath sounded like he was snoring, and every cough sounded like he would drown in the liquid. The nurses used the nebulizer on him (saline mist through a mask) and that seemed to clear it up for an hour or so and then it began again. Every time he coughed he seemed to be choking on the phlegm and could not get his breath, even though, even with the suction machine, there did not seem to be much actually coming up. They gave him a second treatment with the nebulizer but it did not seem to help as much. I was afraid to leave him because I was afraid he would choke on it. However, they finally got him turned on his side and when the sleeping meds took effect, he went to sleep and stopped coughing. Please pray he will get through the night as they only check on him periodically.
The good news was that the meds seemed to be working better for the pain and rigidity. He only had one bad spell - and one "zombie" attack.
The doctor popped in today but will come in and talk to us at length tomorrow.
Apparently today was a bad day at the Hospice, several patients having a very hard day (I don't know if John was included in that or not) and a new patient admitted. It meant that I had to chase down meds several times in order to get them to him on time. I am afraid I am getting a reputation amongst the nurses - and not necessarily a positive one.
Did not leave until after 10pm tonight and I am tired.
Two thumbs down today
The good news was that the meds seemed to be working better for the pain and rigidity. He only had one bad spell - and one "zombie" attack.
The doctor popped in today but will come in and talk to us at length tomorrow.
Apparently today was a bad day at the Hospice, several patients having a very hard day (I don't know if John was included in that or not) and a new patient admitted. It meant that I had to chase down meds several times in order to get them to him on time. I am afraid I am getting a reputation amongst the nurses - and not necessarily a positive one.
Did not leave until after 10pm tonight and I am tired.
Two thumbs down today
Sunday, April 10, 2011
Sunday, April 10, 2011
I did not write the blog yesterday because when I got home I was so tired I just climbed into bed.
Yesterday John slept for most of the morning. In the afternoon the Rev Ed Hird, from St Simon's Church in North Vancouver came to visit. The nurses had been giving John what they called "break through" doses of pain killers hoping to get ahead of the pain and thus prevent it. That worked fairly well for most of the day but seemed to stop working about 6pm and from then until bedtime he was very agitated, restless, and every so often he would raise up in bed - head and feet up and arms stretched out in fromt of him, looking absolutely terror stricken - whether that is from the meds, hallucinations or pain I do not know.
Today when I arrived he was already awake and quite lucid. He was able to talk better and I could understand almost everything he said. The Rev Ron Gibbs, the deacon from St Simon's was in to visit and pray with John today. Later John sat up in bed and watched TV for a little while. Then about 4:30pm John began to get rigid and shake all over. Sometimes, like yesterday, he would do the "zombie thing" as I call it - raising up with arms out etc. Other times he would just grab hold of my hand and squeeze it until the spasms stopped and other times he would tell me to massage his leg muscles or toes. The nurses gave him all the pain killers, muscle relaxants, and tranquilizers that they could, but once again he did not really settle down until he was given his sleeping pills and went to sleep. He kept them very busy between meds and changing his hospital gown and bedding because he was sweating so profusely.
I am exhausted from the emotional strain of watching him go through this.
I am praying that the new (to us) doctor who will be coming tomorrow will have some new ideas to help him.
I was sorry I did not get to church today but I knew I needed to be at the Hospice in the morning so had to skip church.
Two thumbs down for today
Yesterday John slept for most of the morning. In the afternoon the Rev Ed Hird, from St Simon's Church in North Vancouver came to visit. The nurses had been giving John what they called "break through" doses of pain killers hoping to get ahead of the pain and thus prevent it. That worked fairly well for most of the day but seemed to stop working about 6pm and from then until bedtime he was very agitated, restless, and every so often he would raise up in bed - head and feet up and arms stretched out in fromt of him, looking absolutely terror stricken - whether that is from the meds, hallucinations or pain I do not know.
Today when I arrived he was already awake and quite lucid. He was able to talk better and I could understand almost everything he said. The Rev Ron Gibbs, the deacon from St Simon's was in to visit and pray with John today. Later John sat up in bed and watched TV for a little while. Then about 4:30pm John began to get rigid and shake all over. Sometimes, like yesterday, he would do the "zombie thing" as I call it - raising up with arms out etc. Other times he would just grab hold of my hand and squeeze it until the spasms stopped and other times he would tell me to massage his leg muscles or toes. The nurses gave him all the pain killers, muscle relaxants, and tranquilizers that they could, but once again he did not really settle down until he was given his sleeping pills and went to sleep. He kept them very busy between meds and changing his hospital gown and bedding because he was sweating so profusely.
I am exhausted from the emotional strain of watching him go through this.
I am praying that the new (to us) doctor who will be coming tomorrow will have some new ideas to help him.
I was sorry I did not get to church today but I knew I needed to be at the Hospice in the morning so had to skip church.
Two thumbs down for today
Friday, April 8, 2011
Friday, April 8, 2011
John apparently had a restless night last night, but he was sleeping peacefully when I arrived and continued to do so much of the day until 3:30pm - very similar to yesterday. Once he woke up he wanted some ice cream. Then I got him shaved, hair brushed etc. and he was all set for the day - well, what was left of it anyway. The muscle spasms and cramps did not start until 5pm today but they did not stop, in spite of 2 doses of Dilaudid (synthetic morphine), until he had his bedtime meds at 9:30pm.
I talked to the doctor today, and she explained what changes she has made in the meds up until now and what she suggests for the future. I spoke to her about the difficulty in getting the Parkinsons meds given on time, and so she has put a note on John's file saying that "wife may come and get meds if they are not delivered on time" . The nurse today was ahead of schedule most of the time and once I had to ask her to wait, because I had given John his protein feed earlier and we needed to wait for the full 45 minutes before he had the meds. This was the last time we will actually see this doctor as she is filling in for the regular palliative care doctor who will be back on Monday. So it will be interesting to see if she has the same game plan or makes other changes.
Also talked to their social worker and now I have all sorts of forms to fill out so they can figure out if I have to pay the full $900.00 a month or if we get a cheaper rate. She was very nice and quite helpful.
The staff and volunteers were great today. I really dreaded going this morning and facing another day of wrestling with the staff to get the meds on time. But once the doctor spoke to them there were no further problems.
Here are some pictures of the Hospice.
John's room - one end
Quiet room - to be alone, or have a family meeting
I talked to the doctor today, and she explained what changes she has made in the meds up until now and what she suggests for the future. I spoke to her about the difficulty in getting the Parkinsons meds given on time, and so she has put a note on John's file saying that "wife may come and get meds if they are not delivered on time" . The nurse today was ahead of schedule most of the time and once I had to ask her to wait, because I had given John his protein feed earlier and we needed to wait for the full 45 minutes before he had the meds. This was the last time we will actually see this doctor as she is filling in for the regular palliative care doctor who will be back on Monday. So it will be interesting to see if she has the same game plan or makes other changes.
Also talked to their social worker and now I have all sorts of forms to fill out so they can figure out if I have to pay the full $900.00 a month or if we get a cheaper rate. She was very nice and quite helpful.
The staff and volunteers were great today. I really dreaded going this morning and facing another day of wrestling with the staff to get the meds on time. But once the doctor spoke to them there were no further problems.
Here are some pictures of the Hospice.
John's room - one end
John's room - other end
Family room - free coffee and snacks
Quiet room - to be alone, or have a family meeting
One thumbs up for the morning but one down for the evening.
Thursday, April 7, 2011
Thursday, April 7, 2011
Things went much better today.
When I got to the Hospice, John was sleeping. He spent most of the morning and early afternoon sleeping, although he roused easily and talked whenever the nurses did anything to him. Once or twice he started, tried to sit up and looked very frightened, but then he went back to sleep. I don't know if it is from his dreams, or pain. He was having a few hallucinations but nothing like the last few days.
It was just nice to see him at peace and pain free.
At about 3pm he woke up and asked for some ice cream. He only ate 4 teaspoons of it but seemed to enjoy it very much.
His speech was a little clearer and although it was still difficult, I could understand about 25% of what he was saying. I realized today how tiring it is for me to keep straining to try and hear and understand him.
He was good until 4pm when the muscle spasms began. I asked for some pain meds for him but they did not seem to help much. They went on until 5:30 when he had more pain meds and this time they took effect.
I finished reading him Michae J Foxes book and then he decided to sit up in bed and watch the TV.
He seemed quite lucid and able to think clearly and tell me what he wanted.
The legs spasms started up again at 7:00 pm but they gave him the pain killer right away and he was feeling good almost immediately. Soon he had a few more spoonfuls of ice cream.
In fact, he was doing well enough that I came home early tonight, before they even put him to bed. I am having a "respite".
The care was better today - they did provide the protein feed for me to give to him, and several volunteers were around to make sure we had everything we needed. One showed me how to make coffee in the coffee room. The major difficulty today was that they are still not giving John his Parkinson's meds on time and so for the second day in a row I have ended up "butting heads" with the nurse over the timing of the meds. While I was there, they only gave him his meds on time once. The rest were anywhere from 15 - 30 minutes late.
I tried very hard to just ask nicely for the meds to be given on time because it is so important - and because I cannot give him the protein feed at all when there is not 45 min. between the meds and the feed.
I reiterated that if they would just bring me the pills, I would gladly give him the meds at the proper time if they were too busy. I was told it was against Hospice policy to have drugs sitting out. So I told her if they would just have the pills ready, I would come to the desk and pick them up, crush them, dilute them, and give them to him without them ever just sitting out somehwere. So they are "thinking" on that.
The nurses at the hospital had no problem with just bringing me the pills when they knew they were going to be due at a busy time, and I would give them to John at the appropriate time.
The doctor did not come in today so I do not know what changes she has made in the meds to cause the improvement - but whatever it was, it is working.
We had a lovely Spring day today.
In spite of a few rough times, the day was so much better that I am giving it a one thumbs up.
When I got to the Hospice, John was sleeping. He spent most of the morning and early afternoon sleeping, although he roused easily and talked whenever the nurses did anything to him. Once or twice he started, tried to sit up and looked very frightened, but then he went back to sleep. I don't know if it is from his dreams, or pain. He was having a few hallucinations but nothing like the last few days.
It was just nice to see him at peace and pain free.
At about 3pm he woke up and asked for some ice cream. He only ate 4 teaspoons of it but seemed to enjoy it very much.
His speech was a little clearer and although it was still difficult, I could understand about 25% of what he was saying. I realized today how tiring it is for me to keep straining to try and hear and understand him.
He was good until 4pm when the muscle spasms began. I asked for some pain meds for him but they did not seem to help much. They went on until 5:30 when he had more pain meds and this time they took effect.
I finished reading him Michae J Foxes book and then he decided to sit up in bed and watch the TV.
He seemed quite lucid and able to think clearly and tell me what he wanted.
The legs spasms started up again at 7:00 pm but they gave him the pain killer right away and he was feeling good almost immediately. Soon he had a few more spoonfuls of ice cream.
In fact, he was doing well enough that I came home early tonight, before they even put him to bed. I am having a "respite".
The care was better today - they did provide the protein feed for me to give to him, and several volunteers were around to make sure we had everything we needed. One showed me how to make coffee in the coffee room. The major difficulty today was that they are still not giving John his Parkinson's meds on time and so for the second day in a row I have ended up "butting heads" with the nurse over the timing of the meds. While I was there, they only gave him his meds on time once. The rest were anywhere from 15 - 30 minutes late.
I tried very hard to just ask nicely for the meds to be given on time because it is so important - and because I cannot give him the protein feed at all when there is not 45 min. between the meds and the feed.
I reiterated that if they would just bring me the pills, I would gladly give him the meds at the proper time if they were too busy. I was told it was against Hospice policy to have drugs sitting out. So I told her if they would just have the pills ready, I would come to the desk and pick them up, crush them, dilute them, and give them to him without them ever just sitting out somehwere. So they are "thinking" on that.
The nurses at the hospital had no problem with just bringing me the pills when they knew they were going to be due at a busy time, and I would give them to John at the appropriate time.
The doctor did not come in today so I do not know what changes she has made in the meds to cause the improvement - but whatever it was, it is working.
We had a lovely Spring day today.
In spite of a few rough times, the day was so much better that I am giving it a one thumbs up.
Wednesday, April 6, 2011
Wednesday, April 6, 2011
John was moved by ambulance to the Hospice this morning. It is just across the street and down the block from the hospital, but on the same property. It is a lovely place. John has half of a very large room. They allowed me to bring over the new Vicare air mattress we had just purchased so it was already on the bed when we arrived.
The move was very hard on him. He was very frightened and fighting the restraining straps etc on the stretcher. I rode in the ambulance with him to help quieten him down.
He is not happy with the transfer - he wants to come home.
He has a lovely window looking out onto a garden patio with a bird feeder right outside his window. he has a large TV with a VCR and CD player built in. There are three or four leather chairs and a pull-out couch in his room. Tomorrow I will take pictures.
However, the care he received today was underwhelming to say the least.
According to the nurse - we came on the wrong day. It sounded like it was our fault.
Wednesdays are when they have their staff meeting and consultations and so everyone was in the meeting and busy all day.
The result was that he did not get his 12:30 , 2:00 PD meds until over half an hour later than he should have and only after I chased them for them and finally said, give me the pills and I will give them myself. I asked several times about giving him feed and they never did that at all.
He was in great pain but the nurses would not give him anything because the doctor was in the meeting, and then in a family consulation, and they could not do anything without her OK.
She did finally pop in to see us and said she would be back later but I guess she got too busy. She did order something to help him quieten down and for the pain.
Anyway, the afternoon was terrible and we seldom saw a soul.
At 6:30 a volunteer came in and started to talk with us. She asked if I had had any supper (I actually had only had some cheese and crackers during the day) so she said she would stay with John while I went and got something to eat. Because he is still hallucinating, pulling at his tubes, trying to rip out the IV etc. and having awful back, leg, feet and toe cramps that need to be massaged, I did not feel he could be left alone.
Just then Margie called so I asked her to come and pick me up and we went to Tim Horton;s for supper. Then we returned and I gave her a tour of the new digs.
While I was gone, John asked the volunteer to please drive him home.
When Margie came John told her to tell Bev to take him home.
I can't blame him as from his point of view he could suffer just as well at home as there. He cannot see the difference.
I hope tomorrow will be better.
They do not give out the meds for bedtime until after 9pm and John did not settle down well, so it was after 10pm before I got home tonight.
It was a disappointing day, and a difficult day because John is so unhappy as well as in so much pain.
His speech was a little better today sometimes but still not good and very frustrating for him when he could not make us understand what he was trying to say.
I'm afraid this was another two thumbs down day.
The move was very hard on him. He was very frightened and fighting the restraining straps etc on the stretcher. I rode in the ambulance with him to help quieten him down.
He is not happy with the transfer - he wants to come home.
He has a lovely window looking out onto a garden patio with a bird feeder right outside his window. he has a large TV with a VCR and CD player built in. There are three or four leather chairs and a pull-out couch in his room. Tomorrow I will take pictures.
However, the care he received today was underwhelming to say the least.
According to the nurse - we came on the wrong day. It sounded like it was our fault.
Wednesdays are when they have their staff meeting and consultations and so everyone was in the meeting and busy all day.
The result was that he did not get his 12:30 , 2:00 PD meds until over half an hour later than he should have and only after I chased them for them and finally said, give me the pills and I will give them myself. I asked several times about giving him feed and they never did that at all.
He was in great pain but the nurses would not give him anything because the doctor was in the meeting, and then in a family consulation, and they could not do anything without her OK.
She did finally pop in to see us and said she would be back later but I guess she got too busy. She did order something to help him quieten down and for the pain.
Anyway, the afternoon was terrible and we seldom saw a soul.
At 6:30 a volunteer came in and started to talk with us. She asked if I had had any supper (I actually had only had some cheese and crackers during the day) so she said she would stay with John while I went and got something to eat. Because he is still hallucinating, pulling at his tubes, trying to rip out the IV etc. and having awful back, leg, feet and toe cramps that need to be massaged, I did not feel he could be left alone.
Just then Margie called so I asked her to come and pick me up and we went to Tim Horton;s for supper. Then we returned and I gave her a tour of the new digs.
While I was gone, John asked the volunteer to please drive him home.
When Margie came John told her to tell Bev to take him home.
I can't blame him as from his point of view he could suffer just as well at home as there. He cannot see the difference.
I hope tomorrow will be better.
They do not give out the meds for bedtime until after 9pm and John did not settle down well, so it was after 10pm before I got home tonight.
It was a disappointing day, and a difficult day because John is so unhappy as well as in so much pain.
His speech was a little better today sometimes but still not good and very frustrating for him when he could not make us understand what he was trying to say.
Tuesday, April 5, 2011
I had a long talk with the doctor and he agreed that I could not bring John home in the shape he is currently in. He recommended that palliative care be contacted and I agreed. A few hours later a lovely lady named Glenda, showed up and talked to me and examined John. The result is that John will be moved to Langley Hospice tomorrow morning. It is on the same grounds as the hospital.
This has many advantages including having a palliative care doctor who will do a re-evalation of all his meds and find something to help the pain without causing hallucinations - and to just make him comfortable
More intense nursing care
A room with a couch in it that I can sleep on if I ever want to stay over
Once they get him stable and lucid, thee is the chance to come home on day visits or if he should bounce back, the chance to come home again to live.
I was amazed that they had a bed available.
We have to pay to have him there but it is a little cheaper than a nursing home.
I am not sure whether John fully understands where he is going, but he seemed to be understanding most conversations yesterday. Margie and Trudy were over to visit in the morning and Gilmara and Margie were in in the evening. He seemed glad to see them but none of us could understand most of what he said. I think that some of the hallucinations have to do with bees - and he gets quite angry when I say don't worry there is nothing there. His brother Jim, tells me that he and John and sister Ruth were all stung in an encounter with bees when they were kids so maybe that is where this fear comes from. I pulled a Punch Adams and and told him I had shot them all with a gun. He did not seem amused.
As far as the day went for John it was pretty bad - especially the afternoon. John's muscles spasms have started to effect his whole body at the same time so that he goes rigid and spasms and shakes for 15 - 20 seconds from head to toe. This is new and started yesterday. As you can imagine that is very painful. But because he had not had a BM in 8 days (which is critical in his case because his PD drugs absorbed through the bowel) they gave him a massive enema so that he had pain and cramps from that as well. I told him he must have been having a 10 pound baby but when they changed him the nurse said it was more like a 2 oz baby. In other words it had little effect. But he sure suffered. His hospital gown and bed were absolutely drenched with his sweat and when they came to change him they had to change absolutely everthing because it was all so wet.
The male nurse who came on at 3:30 finally called the doctor and asked for John to be given more Serequil to quieten him down and give him some measure of comfort. The doctor had refused to do that before but this time he agreed. That made a big difference. Although he was still hallucinating and grabbing at his sheets, tubes or anything else he could get his hands on, or fighting off bees, in between he was able to lay still and rest and the spasms and cramping disappeared.
I am looking forward to getting him moved into the Hospice and then we will see what happens next. More than anything else I hope they can make him lucid and comfortable.
two thumbs down for the day but one thumbs up for the hope of more effective care and treatment
This has many advantages including having a palliative care doctor who will do a re-evalation of all his meds and find something to help the pain without causing hallucinations - and to just make him comfortable
More intense nursing care
A room with a couch in it that I can sleep on if I ever want to stay over
Once they get him stable and lucid, thee is the chance to come home on day visits or if he should bounce back, the chance to come home again to live.
I was amazed that they had a bed available.
We have to pay to have him there but it is a little cheaper than a nursing home.
I am not sure whether John fully understands where he is going, but he seemed to be understanding most conversations yesterday. Margie and Trudy were over to visit in the morning and Gilmara and Margie were in in the evening. He seemed glad to see them but none of us could understand most of what he said. I think that some of the hallucinations have to do with bees - and he gets quite angry when I say don't worry there is nothing there. His brother Jim, tells me that he and John and sister Ruth were all stung in an encounter with bees when they were kids so maybe that is where this fear comes from. I pulled a Punch Adams and and told him I had shot them all with a gun. He did not seem amused.
As far as the day went for John it was pretty bad - especially the afternoon. John's muscles spasms have started to effect his whole body at the same time so that he goes rigid and spasms and shakes for 15 - 20 seconds from head to toe. This is new and started yesterday. As you can imagine that is very painful. But because he had not had a BM in 8 days (which is critical in his case because his PD drugs absorbed through the bowel) they gave him a massive enema so that he had pain and cramps from that as well. I told him he must have been having a 10 pound baby but when they changed him the nurse said it was more like a 2 oz baby. In other words it had little effect. But he sure suffered. His hospital gown and bed were absolutely drenched with his sweat and when they came to change him they had to change absolutely everthing because it was all so wet.
The male nurse who came on at 3:30 finally called the doctor and asked for John to be given more Serequil to quieten him down and give him some measure of comfort. The doctor had refused to do that before but this time he agreed. That made a big difference. Although he was still hallucinating and grabbing at his sheets, tubes or anything else he could get his hands on, or fighting off bees, in between he was able to lay still and rest and the spasms and cramping disappeared.
I am looking forward to getting him moved into the Hospice and then we will see what happens next. More than anything else I hope they can make him lucid and comfortable.
two thumbs down for the day but one thumbs up for the hope of more effective care and treatment
Tuesday, April 5, 2011
Monday, April 4, 2011
Today was awful.
When I got to the hospital, John seemed sleepy and a little disoriented. Shortly thereafter, the doctor came in. He said that the dilaudid seemed to be controlling the pain now and would I like to take John home. I asked how I would manage the pain (because he currently gets shots inravenously) and he said he could write a prescription for pills to do the same thing. I said OK I would like one more day to see how he did and I could bring him home on Tuesday.
However, John began to show signs of great anxiety, hallucinations, etc. and they got worse as the day wore on. His speech was completely unintelligable so I do not know if what he was saying made any sense. But he was reaching for things in the air and pointing at things on the ceiling and being startled and trying to sit up with arms out looking very frightened. He was grabbing at his oxygen tube, the sheets, his gown etc. and even trying to get our of bed. This went on all day and evening.
When the nurse came to arrange for the ambulance to bring him home I told them I was not bringing him home tomorrow - that these problems need to be solved.
I thought it was the effect of the narcotics but the nurses were not so sure. He is not on that high a dosage. They thought he may have a bladder infection or something else that is triggering this.
The only good thing was that he had very little trouble with the muscle spasms and cramps and sweating he only soaked one hospital gown.
Because of the condition he was in, I was afraid to leave his bedside at all until they got him to sleep at 9pm. So I called Margie and she brought me supper over from Gateway. I had taken some crackers and cheese for lunch but had planned to go to the cafeteria for supper.
I will need great wisdom in the next few days to know when or if John should come home again.
Please pray for both of us. It is getting very difficult.
FOUR thumbs down for today
When I got to the hospital, John seemed sleepy and a little disoriented. Shortly thereafter, the doctor came in. He said that the dilaudid seemed to be controlling the pain now and would I like to take John home. I asked how I would manage the pain (because he currently gets shots inravenously) and he said he could write a prescription for pills to do the same thing. I said OK I would like one more day to see how he did and I could bring him home on Tuesday.
However, John began to show signs of great anxiety, hallucinations, etc. and they got worse as the day wore on. His speech was completely unintelligable so I do not know if what he was saying made any sense. But he was reaching for things in the air and pointing at things on the ceiling and being startled and trying to sit up with arms out looking very frightened. He was grabbing at his oxygen tube, the sheets, his gown etc. and even trying to get our of bed. This went on all day and evening.
When the nurse came to arrange for the ambulance to bring him home I told them I was not bringing him home tomorrow - that these problems need to be solved.
I thought it was the effect of the narcotics but the nurses were not so sure. He is not on that high a dosage. They thought he may have a bladder infection or something else that is triggering this.
The only good thing was that he had very little trouble with the muscle spasms and cramps and sweating he only soaked one hospital gown.
Because of the condition he was in, I was afraid to leave his bedside at all until they got him to sleep at 9pm. So I called Margie and she brought me supper over from Gateway. I had taken some crackers and cheese for lunch but had planned to go to the cafeteria for supper.
I will need great wisdom in the next few days to know when or if John should come home again.
Please pray for both of us. It is getting very difficult.
FOUR thumbs down for today
Sunday, April 3, 2011
Sunday, April 3, 2011
I am not sure how to describe today.
Since John slept most of yesterday, I thought he would likely be asleep again this morning so I went to church before I went to the hospital. Turned out he had not been asleep, and had been calling for me for some time. He was quite disturbed and I understood why when he pointed to the apparatus beside his bed that they use to pump his feed into him during the night. It was running. This meant that he was being given protein feed right up until the time of his Parkinson's meds and that is what we always try to avoid as they conflict and the protein prevents the sinemet from working properly.
I called the nurse and she was quite brusk, and said that his sugar levels were down, and since I had not been there to feed him, they had put the pump back on. (In other words, it was my fault). Now whenever his sugar has gone low before the nurses have just given him some glucose to bring it back up. So when it was so close to meds time (they were acutually late with the Parkinsons meds) they did not need to give him the protein feed. When the next nurse came on she was much more understanding and recorded it in their log and said that it would not happen again. Anyway I have asked for a consult with the dietician tomorrow to see how best to work this all out. It may mean I really need to give him more tube feeds with the syringe during the day. I won't go into all the details about how and why this needs to be done but I need to talk to the dietician about it.
Anyway, he got through the next 90 minutes with only a slight problem of the meds and feed conflicting (mainly too much mucous) he had very few problems with the muscle spasms and cramps which was a real blessing, and only some mild sweating. But he was much more agitated and unable to communicate today. I suspect it is a result of the heavy pain killers he is on. But he spent a lot of time staring at the ceiling and 95% of what he said, I could not understand - for the nurses it was more like 100% So he was getting more and more frustrated and we could not figure out what he wanted or needed.
He has speech aids, pictures, alphabetical letters etc to point at but he cannot seem to concentrate long enough, or point accurately enough at them to use them either.
At 7:30 tonight he was extremely restless and he asked me to ask the nurses to give him his sleeping pills because he just wanted to go to sleep for the night. He was sound asleep and snoring (but his eyes were still open - wierd) when I left at 8:30pm.
Margie came over and visited this afternoon and brought me a Tim Horton's coffee and a Quizno's turkey sub. That was a lovely change and I appreciated it very much.
I will go to the hospital early tomorrow morning in hopes of catching the doctor on his early rounds.
We really need God to make a way where there seems to be no way!!!
Two thumbs down
Since John slept most of yesterday, I thought he would likely be asleep again this morning so I went to church before I went to the hospital. Turned out he had not been asleep, and had been calling for me for some time. He was quite disturbed and I understood why when he pointed to the apparatus beside his bed that they use to pump his feed into him during the night. It was running. This meant that he was being given protein feed right up until the time of his Parkinson's meds and that is what we always try to avoid as they conflict and the protein prevents the sinemet from working properly.
I called the nurse and she was quite brusk, and said that his sugar levels were down, and since I had not been there to feed him, they had put the pump back on. (In other words, it was my fault). Now whenever his sugar has gone low before the nurses have just given him some glucose to bring it back up. So when it was so close to meds time (they were acutually late with the Parkinsons meds) they did not need to give him the protein feed. When the next nurse came on she was much more understanding and recorded it in their log and said that it would not happen again. Anyway I have asked for a consult with the dietician tomorrow to see how best to work this all out. It may mean I really need to give him more tube feeds with the syringe during the day. I won't go into all the details about how and why this needs to be done but I need to talk to the dietician about it.
Anyway, he got through the next 90 minutes with only a slight problem of the meds and feed conflicting (mainly too much mucous) he had very few problems with the muscle spasms and cramps which was a real blessing, and only some mild sweating. But he was much more agitated and unable to communicate today. I suspect it is a result of the heavy pain killers he is on. But he spent a lot of time staring at the ceiling and 95% of what he said, I could not understand - for the nurses it was more like 100% So he was getting more and more frustrated and we could not figure out what he wanted or needed.
He has speech aids, pictures, alphabetical letters etc to point at but he cannot seem to concentrate long enough, or point accurately enough at them to use them either.
At 7:30 tonight he was extremely restless and he asked me to ask the nurses to give him his sleeping pills because he just wanted to go to sleep for the night. He was sound asleep and snoring (but his eyes were still open - wierd) when I left at 8:30pm.
Margie came over and visited this afternoon and brought me a Tim Horton's coffee and a Quizno's turkey sub. That was a lovely change and I appreciated it very much.
I will go to the hospital early tomorrow morning in hopes of catching the doctor on his early rounds.
We really need God to make a way where there seems to be no way!!!
Two thumbs down
Saturday, April 2, 2011
Saturday, April 2, 2011
When I got to the hospital this morning John was sleeping - soundly. He slept all morning, and with two short exceptions, all afternoon until 5pm. Then he suddenly woke up and wanted some ice cream.
By 6pm the leg cramps had started. The nurses gave him the dilaudum and he was fine for the next hour. Then they started up again. They increased the dilaudum in hopes it would last longer but it never even fully took effect. Although it was not continuous, he kept getting the muscle spasms every few minutes. At 8pm they gave him another dose of the pain killer but it seemed to have no effect whatsoever this time so at 8:30pm they gave him his sleeping meds. By 9pm he was settled and calm although he had not actually dropped off to sleep. But I came home to get some R&R.
Two thumbs down
By 6pm the leg cramps had started. The nurses gave him the dilaudum and he was fine for the next hour. Then they started up again. They increased the dilaudum in hopes it would last longer but it never even fully took effect. Although it was not continuous, he kept getting the muscle spasms every few minutes. At 8pm they gave him another dose of the pain killer but it seemed to have no effect whatsoever this time so at 8:30pm they gave him his sleeping meds. By 9pm he was settled and calm although he had not actually dropped off to sleep. But I came home to get some R&R.
Two thumbs down
Friday, April 1, 2011
Friday, April 1, 2011
Can you believe it is April already? Wow. Spring has sprung...etc....
I went to the hospital early this morning in order to see the doctor when he made his rounds. Turns out he does not come in on Fridays. So we will not see him until next Monday.
John was sleepy when I arrived. As the morning went on he seemed to be dreaming or having hallucinations - reaching out for things, holding them, at one point it looked like he was taking communion. The nurses decided he had had too many narcotics and cut him off the percocet. By noon he was awake and lucid. That lasted for about two hours and then he began to have muscle cramps in his groin and left leg. By 4pm he began to to have muscle cramps and great rigidity in both legs, feet, toes, and his back. He was in a lot of pain. Today, if there was a plus, he did not have as much sweating or difficulty in breathing. He was finally given an injection of dilaudum at 6:30pm and within 10 minutes he was resting comfortably. But it had been a very LONG afternoon. I spent nearly the whole time trying to massage his legs and feet but I am not sure it helped very much.
The drugs had started to wear off and the muscle cramps returned just around 8pm but we had already decided to give him his bedtime meds at 8pm and let him have a good nights sleep, and let me go home and get some rest. He was resting peacefully by 8:30pm and I was home by 9:00pm.
Now I am off to bed.
I am not looking forward to the next two days as we wait for Monday for the doctor to decide what the next treatment should be. In the meantime the nurses can only administer the drugs that have already been prescribed.
Two thumbs down.
I went to the hospital early this morning in order to see the doctor when he made his rounds. Turns out he does not come in on Fridays. So we will not see him until next Monday.
John was sleepy when I arrived. As the morning went on he seemed to be dreaming or having hallucinations - reaching out for things, holding them, at one point it looked like he was taking communion. The nurses decided he had had too many narcotics and cut him off the percocet. By noon he was awake and lucid. That lasted for about two hours and then he began to have muscle cramps in his groin and left leg. By 4pm he began to to have muscle cramps and great rigidity in both legs, feet, toes, and his back. He was in a lot of pain. Today, if there was a plus, he did not have as much sweating or difficulty in breathing. He was finally given an injection of dilaudum at 6:30pm and within 10 minutes he was resting comfortably. But it had been a very LONG afternoon. I spent nearly the whole time trying to massage his legs and feet but I am not sure it helped very much.
The drugs had started to wear off and the muscle cramps returned just around 8pm but we had already decided to give him his bedtime meds at 8pm and let him have a good nights sleep, and let me go home and get some rest. He was resting peacefully by 8:30pm and I was home by 9:00pm.
Now I am off to bed.
I am not looking forward to the next two days as we wait for Monday for the doctor to decide what the next treatment should be. In the meantime the nurses can only administer the drugs that have already been prescribed.
Two thumbs down.
Thursday, March 31, 2011
Thursday, March 31, 2011
Another month gone - wow! And Spring is definitely here - the flowering trees are all in bloom and my bulbs in my balcony planters are also blooming. Beautiful day today - weather wise.
For John is was a really bad day.
Bishop Silas Ng came from Richmond to visit John this morning. It was so good to see him and have a visit and prayer with him. However, John was not feeling too well and could not communicate very much at all. But I know he appreciated the visit.
At 2pm he began to get muscle cramps, in his feet, legs and back. They just got worse and were soon joined by all the other symptoms - sweating, difficulty in breathing etc. The only improvement over the last bad attack he had was that he was not coughing up so much phlegm as the pneumonia is pretty much gone.
This time it went on for hours and the Percocet and Flexerol (muscle relaxant) did not make any difference. By 5pm he was in terrible shape and the nurse called a doctor in. He prescribed morphine. It seemed to help and settle things down. So at 7pm when Margie called and said did i want to go out for coffee, I said sure. She picked me up at the hospital and we went to a local coffee shop and I had some supper. But when I returned to the hospital before 8pm John was much worse again. In fact - really, bad. Another dose of morphine did not help at all. Finally a little before 9pm I told the nurse to give him his sleeping meds and knock him out because I did not know how much more he could take.
Almost instantly, when she gave the meds, all the symptoms stopped, even though he did not fall asleep for another half hour. This is something I need to discuss with the doctor tomorrow.
Anyway, any hope of him coming home tomorrow is gone. In fact, I do not want him home like that. He needs to stay where he is until they solve this mystery.
Please pray for the doctor to have wisdom. I am very concerned that they are focussing on the pain (which obviously has to be dealt with) but not the cause. As I said to Margie, it's like giving you something for pain, but not setting your broken leg
Anyway - two thumbs down for today.
.
For John is was a really bad day.
Bishop Silas Ng came from Richmond to visit John this morning. It was so good to see him and have a visit and prayer with him. However, John was not feeling too well and could not communicate very much at all. But I know he appreciated the visit.
At 2pm he began to get muscle cramps, in his feet, legs and back. They just got worse and were soon joined by all the other symptoms - sweating, difficulty in breathing etc. The only improvement over the last bad attack he had was that he was not coughing up so much phlegm as the pneumonia is pretty much gone.
This time it went on for hours and the Percocet and Flexerol (muscle relaxant) did not make any difference. By 5pm he was in terrible shape and the nurse called a doctor in. He prescribed morphine. It seemed to help and settle things down. So at 7pm when Margie called and said did i want to go out for coffee, I said sure. She picked me up at the hospital and we went to a local coffee shop and I had some supper. But when I returned to the hospital before 8pm John was much worse again. In fact - really, bad. Another dose of morphine did not help at all. Finally a little before 9pm I told the nurse to give him his sleeping meds and knock him out because I did not know how much more he could take.
Almost instantly, when she gave the meds, all the symptoms stopped, even though he did not fall asleep for another half hour. This is something I need to discuss with the doctor tomorrow.
Anyway, any hope of him coming home tomorrow is gone. In fact, I do not want him home like that. He needs to stay where he is until they solve this mystery.
Please pray for the doctor to have wisdom. I am very concerned that they are focussing on the pain (which obviously has to be dealt with) but not the cause. As I said to Margie, it's like giving you something for pain, but not setting your broken leg
Anyway - two thumbs down for today.
Wednesday, March 30, 2011
Wednesday March 30, 2011
John had a pretty good day today. He had several minor attacks of cramping but they did not last long. If he has another day as good as that tomorrow the doctor MAY let him come home of Friday. The doctor says he has to have two days where they do not have to do anything for him in the hospital that I cannot do at home. But because John does have an occassional good day regardless of what we do I will not count on it too much until we get tomorrow over with.
Please pray he will continue to respond to the various meds as he should.
Anyway - a one thumbs up for today. Yeah.
Please pray he will continue to respond to the various meds as he should.
Anyway - a one thumbs up for today. Yeah.
Tuesday, March 29, 2011
Tuesday March 29, 2011
When I got to the hospital today the nurse told me that John had had a restless night. He seemed OK in the morning and into the afternoon. Mostly he just watched TV. However, about 5:00pm he began to get severe muscle cramps in his legs and feet. The doctor had not seen John on his morning rounds and arrived at his bedside a half hour later. This was the first time he has actually witnessed one of John's episodes and he was quite disturned by the amount of rigidity, cramping and sweating.
He immediately ordered a muscle relaxant for him and told me not to count on John coming home on Thursday as we had discussed earlier. He wants him to have two days of no "attacks" before he comes home.
Debbie dropped in and had a visit with us today which was very nice. Margie called and asked me to go out with her to supper but I did not feel John was doing well enough at that time for me to leave him.
The lady across the way who has Parkinsons and dementia is being moved to another ward tomorrow. She was supposed to go today but apparently whoever was in the bed she was supposed to move in to, was refusing to leave. Interesting place.
I left the hosital early tonight - just after 8pm - as I was so tired. I hope John was good until they brought his sleeping meds to him.
Now I am off to bed.
One thumbs down
He immediately ordered a muscle relaxant for him and told me not to count on John coming home on Thursday as we had discussed earlier. He wants him to have two days of no "attacks" before he comes home.
Debbie dropped in and had a visit with us today which was very nice. Margie called and asked me to go out with her to supper but I did not feel John was doing well enough at that time for me to leave him.
The lady across the way who has Parkinsons and dementia is being moved to another ward tomorrow. She was supposed to go today but apparently whoever was in the bed she was supposed to move in to, was refusing to leave. Interesting place.
I left the hosital early tonight - just after 8pm - as I was so tired. I hope John was good until they brought his sleeping meds to him.
Now I am off to bed.
One thumbs down
Monday, March 28, 2011
Monday March 28, 2011
I went to bed at 8:15pm last night and slept through until 7am this morning. Boy, that felt good.
I was up to the hospital early so that I would see the doctor when he made his rounds. He tells me that the pneumonia is now clearing nicely. He is pleased with the difference the Percocet has made for John. He wants to continue to treat him in hospital for the next few days, but if there re no major set-backs, he will release John to come home on Thursday.
I have mixed feelings about that. It will be wonderful (and much easier on me) to have him home. Howeverr, he is still having episodes - he had one at 5pm tonight and he was not due for the Percocet for another hour but the nurse gave it to him early and then he settled down again. I am just anxious as to whether the problem is really solved or not. However, there are two more days to see how things go.
John watched TV for most of the day and was quite comfortable up until the 5pm session.
Not quite sure how to rate today
I was up to the hospital early so that I would see the doctor when he made his rounds. He tells me that the pneumonia is now clearing nicely. He is pleased with the difference the Percocet has made for John. He wants to continue to treat him in hospital for the next few days, but if there re no major set-backs, he will release John to come home on Thursday.
I have mixed feelings about that. It will be wonderful (and much easier on me) to have him home. Howeverr, he is still having episodes - he had one at 5pm tonight and he was not due for the Percocet for another hour but the nurse gave it to him early and then he settled down again. I am just anxious as to whether the problem is really solved or not. However, there are two more days to see how things go.
John watched TV for most of the day and was quite comfortable up until the 5pm session.
Not quite sure how to rate today
Sunday, March 27, 2011
Sunday, March 27, 2011
John had a good night and seemed fine when I got to the hospital this morning. Margie picked me up at the hospital at 9:30am and I went with her to church at St Simon's in North Vancouver. This was the church that John served in as an honourary assistant for many years - but it is too far away for me to attend any more with the time restraints I have. It was wonderful to see so many old friends, and since it was their Renewal weekend, the guest speaker, The Rev David Mcfarlane gave a really great sermon.
John had a good day the rest of the day as well. He had one slight episode of sweating but other than that has been quite stable. We rented a TV for him today and he was happily watching that when I left tonight. Having the TV plus no bad episodes, meant that I came home much earlier tonight. PTL Now it's early to bed for me.
So a definite one thumbs up for today.
John had a good day the rest of the day as well. He had one slight episode of sweating but other than that has been quite stable. We rented a TV for him today and he was happily watching that when I left tonight. Having the TV plus no bad episodes, meant that I came home much earlier tonight. PTL Now it's early to bed for me.
So a definite one thumbs up for today.
Saturday, March 26, 2011
Saturday, March 26, 2011
Well, the sleeping meds must have worked because I did not get called back to the hospital last night.
When I got to the hospital today John was sleeping. He woke up at about 11am and said he felt pretty good. Although our doctor was supposed to be on call this weekend and said he would see us today, we never saw him so I did not get a chance to get his opinion on what happened last night.
In the afternoon Margie dropped around to the hospital and took me out for lunch at Tim Hortons. But when I got back John was beginning to show signs of rigidity. He told me that he was going home with me tonight. At first I thought he was joking because the lady in the bed across from him with dementia is always wanting to go hom - then I realized he was serious!! I had to tell him he has to stay there until they have a better handle on all of this. For the rest of the afternoon and all evening the symptoms seemed to come and go - never getting really bad but never being far away.
They switched the kind of antibiotics he is being given via intravenous - I thought that the pneumonia was doing well, but apparently the doctor was not happy with the progress so is trying a different kind. I am told he is to get it for 7 days - I don't know if that means he is definitely going to be there for the next week or not.
I ordered a TV for him today to help him fill the time (and to save my voice a little bit)
I have read one detective novel to him and we are over half way through Michael J Foxes book, Always Looking Up. My voice is getting rough!!!
The nurse gave John his sleeping meds at 9pm tonight so I could come home by 9:30pm. They are very helpful. 8:30am - 9:30 pm - feels like a long day.
One thumbs down
When I got to the hospital today John was sleeping. He woke up at about 11am and said he felt pretty good. Although our doctor was supposed to be on call this weekend and said he would see us today, we never saw him so I did not get a chance to get his opinion on what happened last night.
In the afternoon Margie dropped around to the hospital and took me out for lunch at Tim Hortons. But when I got back John was beginning to show signs of rigidity. He told me that he was going home with me tonight. At first I thought he was joking because the lady in the bed across from him with dementia is always wanting to go hom - then I realized he was serious!! I had to tell him he has to stay there until they have a better handle on all of this. For the rest of the afternoon and all evening the symptoms seemed to come and go - never getting really bad but never being far away.
They switched the kind of antibiotics he is being given via intravenous - I thought that the pneumonia was doing well, but apparently the doctor was not happy with the progress so is trying a different kind. I am told he is to get it for 7 days - I don't know if that means he is definitely going to be there for the next week or not.
I ordered a TV for him today to help him fill the time (and to save my voice a little bit)
I have read one detective novel to him and we are over half way through Michael J Foxes book, Always Looking Up. My voice is getting rough!!!
The nurse gave John his sleeping meds at 9pm tonight so I could come home by 9:30pm. They are very helpful. 8:30am - 9:30 pm - feels like a long day.
One thumbs down
Friday, March 25, 2011
Friday, March 25. 2011
Yesterday the doctor put John on Percocet. This morning, because it seemed to stop the symptoms he was having, the doctor increased the dosage to 2 tablets every 5 hours and John had quite a good day. I was so relieved to think that we had found a solution. I asked the doctor why this was helping and he said it was blocking the signals to the atatomic nervous system that was triggering all these symptoms.
He seemed quite good so I took the opportunity to take the evening off and go out to dinner with our church group. We had a great steak dinner at a nearby restaurant.
I just got home and there was a message on the phone to call the hospital.
The nurse told me that John was in bad shape, that they had given him more Percocet and all his sleeping meds but so far he was quite agitated and even even aggresive when they tried to tube feed him. They have had the doctor on call in to see him but he has only ordered Ativan for him if he does not settle down.
If this continues they will call me to come back up to the hospital .tonight
Usually the bedtime meds knock him out and I hope that is what will happen tonight.
Fortunately, our doctor is on call this weekend so he will be in to see John tomorrow morning and we can see what to do next.
I am so disappointed as I thought we had found an easy solution!!
I thought I would be giving a one thumbs up but now it is a one thumbs down.
He seemed quite good so I took the opportunity to take the evening off and go out to dinner with our church group. We had a great steak dinner at a nearby restaurant.
I just got home and there was a message on the phone to call the hospital.
The nurse told me that John was in bad shape, that they had given him more Percocet and all his sleeping meds but so far he was quite agitated and even even aggresive when they tried to tube feed him. They have had the doctor on call in to see him but he has only ordered Ativan for him if he does not settle down.
If this continues they will call me to come back up to the hospital .tonight
Usually the bedtime meds knock him out and I hope that is what will happen tonight.
Fortunately, our doctor is on call this weekend so he will be in to see John tomorrow morning and we can see what to do next.
I am so disappointed as I thought we had found an easy solution!!
I thought I would be giving a one thumbs up but now it is a one thumbs down.
Thursday, March 24, 2011
This was the worst day yet.
I thought that John would be looked after for the morning so I took the time to get some things done around the apartment, and go to the Thursday morning coffee hour. I did not get to the hospital until noon.
Apparently John had had a difficult time in the morning trying to communicate with both the nurses and the doctor. Because they are such busy people, they do not have the time to try and listen to what he is whispering or to wait until he can get a word out. So he was frustrated. However, worse than that was the fact that he had begun another "attack" at about 11:00am and was already rigid and sweating by the time I got there. When I arrived John greeted me by saying, "take me home, I don't was to die here." I assured him he was not going to die there - although later on I began to wonder if I had spoken too soon.
The next few hours were a nightmare between the rigidity, difficulty in breathing and sweating. By 3pm the nurses called our doctor and asked for something to relieve his pain. The doctor ordered Percocet. They gave him a dose at 2;30 but it made not difference at all. They gave him another one at 3:30pm and shortly thereafter he began to feel better. We got his clothing and the bed all changed from being soaked with his sweat and he said he felt much better. That lasted for about one hour.
During that time Bishop Ron Ferris dropped in to see John and prayed with him. Gus had come earlier but John was not well enough to visit with him at all. He also could not talk to his brother Jim or his sister Ruth who both phoned today. However, I was able to talk to them and update them on John's condition.
At about 5pm John said he could feel another attack coming on. The nurse said he was only supposed to have the Percocet every 6 hours. Nevertheless, because he was getting worse again, she finally relented and gave him another dose at 6:30pm. This helped a little although he never felt good again.
I read a good part of a mystery novel to him to keep his mind occupied. When they brought the 9:30 meds I asked them to give him his sleeping pills too and he was soon sound asleep. Then I could come home.
It has been an exhausting day.
I'm not sure what all this means. I hope to go to the hospital very early tomorrow so I will see the doctor when he makes his rounds and see what he has to say.
a FOUR thumbs down day today.
I thought that John would be looked after for the morning so I took the time to get some things done around the apartment, and go to the Thursday morning coffee hour. I did not get to the hospital until noon.
Apparently John had had a difficult time in the morning trying to communicate with both the nurses and the doctor. Because they are such busy people, they do not have the time to try and listen to what he is whispering or to wait until he can get a word out. So he was frustrated. However, worse than that was the fact that he had begun another "attack" at about 11:00am and was already rigid and sweating by the time I got there. When I arrived John greeted me by saying, "take me home, I don't was to die here." I assured him he was not going to die there - although later on I began to wonder if I had spoken too soon.
The next few hours were a nightmare between the rigidity, difficulty in breathing and sweating. By 3pm the nurses called our doctor and asked for something to relieve his pain. The doctor ordered Percocet. They gave him a dose at 2;30 but it made not difference at all. They gave him another one at 3:30pm and shortly thereafter he began to feel better. We got his clothing and the bed all changed from being soaked with his sweat and he said he felt much better. That lasted for about one hour.
During that time Bishop Ron Ferris dropped in to see John and prayed with him. Gus had come earlier but John was not well enough to visit with him at all. He also could not talk to his brother Jim or his sister Ruth who both phoned today. However, I was able to talk to them and update them on John's condition.
At about 5pm John said he could feel another attack coming on. The nurse said he was only supposed to have the Percocet every 6 hours. Nevertheless, because he was getting worse again, she finally relented and gave him another dose at 6:30pm. This helped a little although he never felt good again.
I read a good part of a mystery novel to him to keep his mind occupied. When they brought the 9:30 meds I asked them to give him his sleeping pills too and he was soon sound asleep. Then I could come home.
It has been an exhausting day.
I'm not sure what all this means. I hope to go to the hospital very early tomorrow so I will see the doctor when he makes his rounds and see what he has to say.
a FOUR thumbs down day today.
Wednesday, March 23, 2011
Wednesday, March 23, 2011
I took the opportunity to sleep in this morning. Then I went to the store and bought 2 dozen small cupcakes. I made a three tier cake out of them and took it to John in the hospital. When I got there I discovered he had finally been moved out of emergency and is now in room 209 South at Langley Memorial Hospital.
He had a pretty good morning and afternoon. They had failed to give him all of the protein feed they were supposed to last night but I just gave him more today to make up for it. He is even reading a book and he has not read anything for a long time.
Margie and Gilmara arrived at about 4pm with Tim Horton's coffees and a birthday card from everyone at Gateway. They had only been there a few minutes when John began to sweat. So they left shortly thereafter as they could see he was getting worse.
Now in one way, I was glad he was exhibiting these symptoms so they can be reported and hopefully dealt with. But he got so bad that I wished he had not had to go through that at all.
This time it was the rigidity that was so bad. I sat and massaged his legs, feet and toes for hours - literally - and they were like they were made of stone and the cramping was very painful. He was also experiencing nausea (something new) and a whole lot of phlegm coming up. They have him on a suction machine there as well and it is big and the container was almost full. He only soaked one hospital gown with sweat although he needed another one by the time I left.
At about 8pm his breathing suddenly became very laboured and he was really in agony. The nurses could do little to help him but I made sure they were documenting it all for the doctor. After about an hour John said he was worn out, losing strength and needed something done.
I asked the nurse to either call a doctor or give him his sleeping pills two hours early. She opted for the latter. In about 10 minutes he was sound asleep and finally peaceful.
So he certainly did not have a very good birthday although he enjoyed all the many greetings from friends via cards, e-mails and facebook. I copied them all out and took them over to him. Thanks to everyone who sent him birthday wishes and get well wishes.
We also received a lovely bouquet of flowers from my dear Aunt Dot today. They could not have come at a better time to cheer us up. They do not allow flowers in the hospital rooms any more but I will take a picture and show it to John and enjoy the flowers here at home.
The kids and grandkids, including John in China, all called on my cell phone and talked to John and wished him a happy birthday.
Anyone that wants to call him on my cell and say hi (you have to do all the talking) is welcome to do so - 604-825-4819 between the hours of 12pm and 8pm (BCtime) Those are times I know I will be there (except from Friday night - I hope to go out for dinner that night)
In the bed across from John is a lady from our condo. She also has Parkinsons. But her symptoms are very different from John. She is physically in better shape - but has some dementia - and certainly still has a strong voice!!! She was yelling and calling for her husband and wanting to go home - right now. As sick as John is, we are so thankful he is still mentally alert and "with it".
Please do pray that the doctors will have wisdom and finally find a solution for these terrible episodes.
Two (or maybe three) thumbs down for today.
He had a pretty good morning and afternoon. They had failed to give him all of the protein feed they were supposed to last night but I just gave him more today to make up for it. He is even reading a book and he has not read anything for a long time.
Margie and Gilmara arrived at about 4pm with Tim Horton's coffees and a birthday card from everyone at Gateway. They had only been there a few minutes when John began to sweat. So they left shortly thereafter as they could see he was getting worse.
Now in one way, I was glad he was exhibiting these symptoms so they can be reported and hopefully dealt with. But he got so bad that I wished he had not had to go through that at all.
This time it was the rigidity that was so bad. I sat and massaged his legs, feet and toes for hours - literally - and they were like they were made of stone and the cramping was very painful. He was also experiencing nausea (something new) and a whole lot of phlegm coming up. They have him on a suction machine there as well and it is big and the container was almost full. He only soaked one hospital gown with sweat although he needed another one by the time I left.
At about 8pm his breathing suddenly became very laboured and he was really in agony. The nurses could do little to help him but I made sure they were documenting it all for the doctor. After about an hour John said he was worn out, losing strength and needed something done.
I asked the nurse to either call a doctor or give him his sleeping pills two hours early. She opted for the latter. In about 10 minutes he was sound asleep and finally peaceful.
So he certainly did not have a very good birthday although he enjoyed all the many greetings from friends via cards, e-mails and facebook. I copied them all out and took them over to him. Thanks to everyone who sent him birthday wishes and get well wishes.
We also received a lovely bouquet of flowers from my dear Aunt Dot today. They could not have come at a better time to cheer us up. They do not allow flowers in the hospital rooms any more but I will take a picture and show it to John and enjoy the flowers here at home.
The kids and grandkids, including John in China, all called on my cell phone and talked to John and wished him a happy birthday.
Anyone that wants to call him on my cell and say hi (you have to do all the talking) is welcome to do so - 604-825-4819 between the hours of 12pm and 8pm (BCtime) Those are times I know I will be there (except from Friday night - I hope to go out for dinner that night)
In the bed across from John is a lady from our condo. She also has Parkinsons. But her symptoms are very different from John. She is physically in better shape - but has some dementia - and certainly still has a strong voice!!! She was yelling and calling for her husband and wanting to go home - right now. As sick as John is, we are so thankful he is still mentally alert and "with it".
Please do pray that the doctors will have wisdom and finally find a solution for these terrible episodes.
Two (or maybe three) thumbs down for today.
Tuesday, March 22, 2011
Tuesday March 22, 2011
John spent the night in emergency. Our family dotor came to see him this morning and admitted him to hospital for an indefinite stay. John has pneumonia which is what was causing the fever. But the antibiotics got that under control quite quickly. However, the doctor is keeping him in to try and get the meds balanced out and working better. Hallelujah. He is going to consult the neurologist and work with him to try and get the puzzle solved.
John felt he had a bad day today. He is still in emergency as there is not bed available up on the ward. So his bed is very uncomfortable. And the nurses are very busy with each new patient who arrives and do not have time to look after the ones hanging around for a long time. I ended up doing all of John's meds and feeding because the nurses were just too busy. Hopefully he will be moved up tomorrow.
Tomorrow is John' 73rd birthday. He thinks this is an awful way to spend a birthday - he says it will be a birthday NOT to remember.
I made sure I was at the hospital by 8am in order to see that he got his first meds for the day. Good job I did because the doctor had only ordered the meds in the blister pack and not any of his Parkinson's meds that are in big bottles because he takes so much of them.
They managed to get hold of the doctor and get verbal permission to give him the sinemet and then we got all the meds sorted out once our own doctor arrived. They were quite astounded at John's regime.
However, they are able to feed him 4 of his 6 cans of protein drink during the night so I only have to feed him twice during the day. This is very good as the protein conflicts with the meds and prevents them from working well.
John did not feel very well all day, but he did not have any episodes of sweating, rigidity etc. Although I am happy about that, I can't help but wonder why???
Please pray the doctors will be able to solve the problem and get the meds working better.
I am sleeping in tomorrow morning (I hope)
One thumbs down
John felt he had a bad day today. He is still in emergency as there is not bed available up on the ward. So his bed is very uncomfortable. And the nurses are very busy with each new patient who arrives and do not have time to look after the ones hanging around for a long time. I ended up doing all of John's meds and feeding because the nurses were just too busy. Hopefully he will be moved up tomorrow.
Tomorrow is John' 73rd birthday. He thinks this is an awful way to spend a birthday - he says it will be a birthday NOT to remember.
I made sure I was at the hospital by 8am in order to see that he got his first meds for the day. Good job I did because the doctor had only ordered the meds in the blister pack and not any of his Parkinson's meds that are in big bottles because he takes so much of them.
They managed to get hold of the doctor and get verbal permission to give him the sinemet and then we got all the meds sorted out once our own doctor arrived. They were quite astounded at John's regime.
However, they are able to feed him 4 of his 6 cans of protein drink during the night so I only have to feed him twice during the day. This is very good as the protein conflicts with the meds and prevents them from working well.
John did not feel very well all day, but he did not have any episodes of sweating, rigidity etc. Although I am happy about that, I can't help but wonder why???
Please pray the doctors will be able to solve the problem and get the meds working better.
I am sleeping in tomorrow morning (I hope)
One thumbs down
Monday, March 21, 2011
John is now in the hospital - well, in emergency anyway.
He had a really bad and prolonged "attack" yesterday afternoon and evening and I finally talked him into letting me call the ambulance. They were really great when they got here - 4 firemen and 2 paramedics -
they took him to the Langley emergency and he was seen by a doctor there. Of course, by the time we got that all done the 8pm meds had finally kicked in and he was looking much better. But the paramedics had made a report on his condition when they got here so they knew he had been much worse - turned out he was also running quite a high temp. That went down as he got better - could be he always has that high temp with these episodes, I have never checked him for that.
Anyway the doctor said that they would keep him in overnight and let the family doctor decide in the morning what to do with him.
John was not a happy camper. It is his birthday tomorrow and I know he does not want to be in hospital then. But I want them to sort out this issue of meds. So we will see..... more news on that to come
I came home at 10:30pm with the expectation of a long nights uninterupted sleep. At midnight the phone rang and it was the emergecy - my husband had asked them to call me to see if it was OK to have his sleeping meds now!!!! Oh well, hope they worked and he has had a good night.
In the afternoon I had attended Margie's Uncle Jack's funeral in Port Coquitlam. It was a really uplifting service - a celebration of a life well lived.
Two thmbs down for sure
He had a really bad and prolonged "attack" yesterday afternoon and evening and I finally talked him into letting me call the ambulance. They were really great when they got here - 4 firemen and 2 paramedics -
they took him to the Langley emergency and he was seen by a doctor there. Of course, by the time we got that all done the 8pm meds had finally kicked in and he was looking much better. But the paramedics had made a report on his condition when they got here so they knew he had been much worse - turned out he was also running quite a high temp. That went down as he got better - could be he always has that high temp with these episodes, I have never checked him for that.
Anyway the doctor said that they would keep him in overnight and let the family doctor decide in the morning what to do with him.
John was not a happy camper. It is his birthday tomorrow and I know he does not want to be in hospital then. But I want them to sort out this issue of meds. So we will see..... more news on that to come
I came home at 10:30pm with the expectation of a long nights uninterupted sleep. At midnight the phone rang and it was the emergecy - my husband had asked them to call me to see if it was OK to have his sleeping meds now!!!! Oh well, hope they worked and he has had a good night.
In the afternoon I had attended Margie's Uncle Jack's funeral in Port Coquitlam. It was a really uplifting service - a celebration of a life well lived.
Two thmbs down for sure
Sunday, March 20, 2011
Sunday, March 20, 2011
John had a good night until 5am. From then on he did not do as well. For the first time I can remember, he was needing his meds (meaning he was already having difficulty breathing, sweating etc.) at 8am He was awake and very uncomfortable by the time the worker arrived at 9am. The day did not get any better.
When I got home from Church the worker had been trying to change his t-shirt and wipe off the sweat but he was so rigid that she was having great difficulty with him. If I had not arrived back when I did, I think he could have ended up on the floor.
I have had to change his clothes three more times today and I am trying to keep the pillows, chair etc covered in towels so I can easily change them as well.
The worker tonight was so concerned that she is calling in a report to the health care nurse.
I have called Sharon, the nurse clinician, and left a message for her to call me tomorrow.
I have also left a message for the OT as she has ordered John's chair to be raised up so that the new lift we have to get will fit under it. Dave, the maintenance man from Gateway, came and made the platform yesterday. What a blessing he has been to us.
Two thumbs down today
When I got home from Church the worker had been trying to change his t-shirt and wipe off the sweat but he was so rigid that she was having great difficulty with him. If I had not arrived back when I did, I think he could have ended up on the floor.
I have had to change his clothes three more times today and I am trying to keep the pillows, chair etc covered in towels so I can easily change them as well.
The worker tonight was so concerned that she is calling in a report to the health care nurse.
I have called Sharon, the nurse clinician, and left a message for her to call me tomorrow.
I have also left a message for the OT as she has ordered John's chair to be raised up so that the new lift we have to get will fit under it. Dave, the maintenance man from Gateway, came and made the platform yesterday. What a blessing he has been to us.
Two thumbs down today
Wednesday, March 16, 2011
Wednesday March 16, 2011
Another difficult day. John slept better last night but was really feeling rough this morning. For the first time, his pj's were soaked which meant he was sweating at night as well.
Got him moved to the sofa where he slept until the next worker came at 11am.
He was good enough by then to get up and get the rest of his morning prep done. By early afteroon he was bad again. I increased the meds but it did not seem to make much difference. I skipped several feedings, hoping that would help, but that did not do anything either. But now I have to stay up and give him the feedings I skipped earlier - so late bedtime for me tonight.
The OT came in today to assess John's rigidity etc. I think that we are going to have to get a different kind of lift for John - one he sits on and swings him into his chair and bed, rather than the one he is using right now where he has to stand. But in order to use the other kind I have to get a platform built for his chair.
Margie called today and Uncle Jack's funeral will be next Monday. I will try and get respite for then so that I can attend the funeral.
Please do pray for her as she tries to deal with all the many details, as well as the grief.
one thumbs down for today.
Got him moved to the sofa where he slept until the next worker came at 11am.
He was good enough by then to get up and get the rest of his morning prep done. By early afteroon he was bad again. I increased the meds but it did not seem to make much difference. I skipped several feedings, hoping that would help, but that did not do anything either. But now I have to stay up and give him the feedings I skipped earlier - so late bedtime for me tonight.
The OT came in today to assess John's rigidity etc. I think that we are going to have to get a different kind of lift for John - one he sits on and swings him into his chair and bed, rather than the one he is using right now where he has to stand. But in order to use the other kind I have to get a platform built for his chair.
Margie called today and Uncle Jack's funeral will be next Monday. I will try and get respite for then so that I can attend the funeral.
Please do pray for her as she tries to deal with all the many details, as well as the grief.
one thumbs down for today.
Tuesday, March 15, 2011
Tuesday March 15, 2011
John had a bad night last night and a bad day today. After yesterday I had hoped we were getting a handle on the meds - but apparently not.
Today was my respite day but by 12:00 when the support worker came, I had just managed to get John up and into his chair. No sooner had I left, than he began to have a really bad attack.
By the time I got back, 4 hours later, the worker was quite upset. John had been rigid and sliding out of his chair and she had tried to get his repositioned but found it too hard. She says she will not attempt that again. She had also changed his t shirt because it was so wet from the sweat. She was very concerned. I wouldn't be surprised if we have a different worker next week.
The only positive today was that John began to feel better about 8:00pm
One of my main tasks for today was to return a commode to the Red Cross as we could only have it on loan for 3 months which was up today. I have since bought a second hand one. The Langley Red Cross is way up at the north end of the city. It is quite a distance from where we live. I headed there first, only to discover they are only open in the morning (I did know that but had forgotten). So I will have to make another trip tomorrow to return it. Otherwise I got all my other errands done.
The company returned John's suction machine today and it seems to be working fine.
Margie came over to help me put some stuff in storage She went home about 8:30pm and was just in the door when she received a call saying that her Uncle Jack had been hit and killed by a car. He was in his late 80's - a bachelor, and she is his nearest next of kin. He often came over to be with her for any special events, and has been with us for the last two Christmas' He lived in Port Coquitlam. We were all very fond of him. He was a wonderful Christian man and will be greatly missed by his many friends in his church and community. I am hoping I can get respite to enable me to go to the funeral once we know when it is.
Two thumbs down for today.
Today was my respite day but by 12:00 when the support worker came, I had just managed to get John up and into his chair. No sooner had I left, than he began to have a really bad attack.
By the time I got back, 4 hours later, the worker was quite upset. John had been rigid and sliding out of his chair and she had tried to get his repositioned but found it too hard. She says she will not attempt that again. She had also changed his t shirt because it was so wet from the sweat. She was very concerned. I wouldn't be surprised if we have a different worker next week.
The only positive today was that John began to feel better about 8:00pm
One of my main tasks for today was to return a commode to the Red Cross as we could only have it on loan for 3 months which was up today. I have since bought a second hand one. The Langley Red Cross is way up at the north end of the city. It is quite a distance from where we live. I headed there first, only to discover they are only open in the morning (I did know that but had forgotten). So I will have to make another trip tomorrow to return it. Otherwise I got all my other errands done.
The company returned John's suction machine today and it seems to be working fine.
Margie came over to help me put some stuff in storage She went home about 8:30pm and was just in the door when she received a call saying that her Uncle Jack had been hit and killed by a car. He was in his late 80's - a bachelor, and she is his nearest next of kin. He often came over to be with her for any special events, and has been with us for the last two Christmas' He lived in Port Coquitlam. We were all very fond of him. He was a wonderful Christian man and will be greatly missed by his many friends in his church and community. I am hoping I can get respite to enable me to go to the funeral once we know when it is.
Two thumbs down for today.
Monday March 14, 2011
John had a really bad night last night - he was awake a lot of the night with phlegm and hiccups. It meant that he felt really bad in the morning. He slept on the couch for the morning and then asked to be put back to bed at noon. Later in the afternoon he got up and felt much better. The rest of the day has gone quite well and he had no bad times with the meds not working.
We seem to be winning a little bit. However, because he slept so much today, even with the sleeping meds, he is telling me he is not sleepy tonight.
I talked to Sharon, the Parkinson's nurse, and our neurologist is away working at VGH for the next 3 weeks. However, she says to keep on with what we are doing and let her know how it goes. I may try feeding him some of his protein drink in the middle of the night to make less feedings when he is taking the meds and see if that helps.
Last night in the middle of the night John told me the suction machine was not working. When I checked it out this morning, sure enough, it was not sucking at all. I checked everything I could and then called the company we got it from. They came and picked it up and will return it tomorrow. However it is $30.00 for the pick up and delivery (the company is in Burnaby). They called to say they could not find anything wrong with it and are returning it to me in the morning. They will put on a new filter and wand as they should be replaced every 6 months (we have had it 3 months) and that will be another $25.00. Ouch.
There was enough improvement for today that I will give it another one thumbs up.
We seem to be winning a little bit. However, because he slept so much today, even with the sleeping meds, he is telling me he is not sleepy tonight.
I talked to Sharon, the Parkinson's nurse, and our neurologist is away working at VGH for the next 3 weeks. However, she says to keep on with what we are doing and let her know how it goes. I may try feeding him some of his protein drink in the middle of the night to make less feedings when he is taking the meds and see if that helps.
Last night in the middle of the night John told me the suction machine was not working. When I checked it out this morning, sure enough, it was not sucking at all. I checked everything I could and then called the company we got it from. They came and picked it up and will return it tomorrow. However it is $30.00 for the pick up and delivery (the company is in Burnaby). They called to say they could not find anything wrong with it and are returning it to me in the morning. They will put on a new filter and wand as they should be replaced every 6 months (we have had it 3 months) and that will be another $25.00. Ouch.
There was enough improvement for today that I will give it another one thumbs up.
Sunday, March 13, 2011
Sunday March 13, 2011
John had a difficult time getting to sleep last night, but once he was asleep he slept well until morning. He was wide awake and alert by 8:30am and had two servings of ice cream before the worker arrived at 9am.
He was good throughout the morning and afternoon.
It seems as if his problems begin about 3:30 - 4:00pm every day so I decided to try and get ahead of it by giving him an extra sinemet with his 2:00pm meds. and each set of meds thereafter. Whether that was the reason, or it was just a good day, he did very well until 7:00pm. Then he began to have an attack altough it never got as severe as it has been the last few days. So that was somewhat encouraginig.
He had very little liquid in his suction machine today although his mouth was obviously bothering him as he ran the machine all afternoon and by this evening he was back to stuffing kleenex into his mouth!!
Enjoyed church today although I wish I could stay longer for the coffee hour afterwards. I managed a few minutes today and had a mouthful of coffee.
Although it was far from perfect it was an improvement today so one thumbs up
He was good throughout the morning and afternoon.
It seems as if his problems begin about 3:30 - 4:00pm every day so I decided to try and get ahead of it by giving him an extra sinemet with his 2:00pm meds. and each set of meds thereafter. Whether that was the reason, or it was just a good day, he did very well until 7:00pm. Then he began to have an attack altough it never got as severe as it has been the last few days. So that was somewhat encouraginig.
He had very little liquid in his suction machine today although his mouth was obviously bothering him as he ran the machine all afternoon and by this evening he was back to stuffing kleenex into his mouth!!
Enjoyed church today although I wish I could stay longer for the coffee hour afterwards. I managed a few minutes today and had a mouthful of coffee.
Although it was far from perfect it was an improvement today so one thumbs up
Friday, March 11, 2011
Friday, March 11, 2011
John did not go to sleep last night until I gave him more sleeping meds at 3:30am. However he slept well after that.Neverthless he was wide awake when the worker came at 9am (he is usually still sleeping).
He had a much better day today.
I read the prescription information that London Drugs gives you with any new med. The one for the new Sinemet under side effects says, "Seek immediate medical attention if any of these rare but very serious side effects occur: fast/shallow breathing, unusual muscle stiffness, unusual sweatig" Sound familiar??? so does that mean he should take less of the med? The nurse told me to give him more. Hmmmmm
Will talk to her again on Monday.
The one time John began to feel bad today, I loaded him into the wheel chair and took him with me to take the garbage out. It seems as if he gets moving the symptoms lessen. Anyway it did seem to stop them and although he was a little rigid and had to be sat back up in his chair once, it was nothing like the last few days.
So very thankful for today
My one concern today is that the disc in my back is very tender and I have to be very careful how I move or turn or it reminds me real fast. It's very hard to do everything I need to do for John if my back is not good. Please pray that the disc swelling will go back down quickly.
Was sad to hear about the earthquake in Japan today. Checked on all our former students and staff who are living there, or have family there, and thankful to say they are all OK. One girl is without gas or electricity and transportation is down - it took her brother 7 hours to walk home from wherever he was. But they are all fine.
One thumbs up for today. Hallelujah
He had a much better day today.
I read the prescription information that London Drugs gives you with any new med. The one for the new Sinemet under side effects says, "Seek immediate medical attention if any of these rare but very serious side effects occur: fast/shallow breathing, unusual muscle stiffness, unusual sweatig" Sound familiar??? so does that mean he should take less of the med? The nurse told me to give him more. Hmmmmm
Will talk to her again on Monday.
The one time John began to feel bad today, I loaded him into the wheel chair and took him with me to take the garbage out. It seems as if he gets moving the symptoms lessen. Anyway it did seem to stop them and although he was a little rigid and had to be sat back up in his chair once, it was nothing like the last few days.
So very thankful for today
My one concern today is that the disc in my back is very tender and I have to be very careful how I move or turn or it reminds me real fast. It's very hard to do everything I need to do for John if my back is not good. Please pray that the disc swelling will go back down quickly.
Was sad to hear about the earthquake in Japan today. Checked on all our former students and staff who are living there, or have family there, and thankful to say they are all OK. One girl is without gas or electricity and transportation is down - it took her brother 7 hours to walk home from wherever he was. But they are all fine.
One thumbs up for today. Hallelujah
Thursday, March 10, 2011
Thursday, March 10 2011
John slept well on his new mattress - although the last few days he has been waking up earlier than usual - but not because he was uncomfortable. Maybe he is just getting a better sleep.
I sent an e-mail to Sharon, the nurse clinician, outlining exactly what had been happening the last few days and asked her to call me, which she did.
Apparently the doctor is in Montreal at a conference so she could not talk to him. She suggested that when he gets bad to give him one more Sinemet pill. I tried it this afternoon and it did seem to help although John has had a rough day. She thought it was a good idea to stagger the feeding as I did yesterday so I will continue with that. It has it's benefits but one of the negatives is that I have to start earlier and the last one is 11:45pm so I have to stay up a little longer. However, John can just sleep through it.
The doctor gets back to the office on Monday so we have to wait until then to get his input.
My frustration level with this whole process is getting very high. It is just so hard to watch John suffer so much and feel like there is nothing I can do and we are always waiting for the doctor to be around to make some changes in a few days. But nothing ever really changes.
Tonight it was my night for respite. Margie and another friend, Pat from Bowen Island, came and picked me up and took me out for a steak dinner. We had a lovely time and deliious dinner.
John wasn't too bad while I was gone but got bad just before bedtime and asked to be put to bed early. However, he has yet to settle down ...ooops.... there goes his bell again.
One thumbs down for today (except for dinner!!!)
I sent an e-mail to Sharon, the nurse clinician, outlining exactly what had been happening the last few days and asked her to call me, which she did.
Apparently the doctor is in Montreal at a conference so she could not talk to him. She suggested that when he gets bad to give him one more Sinemet pill. I tried it this afternoon and it did seem to help although John has had a rough day. She thought it was a good idea to stagger the feeding as I did yesterday so I will continue with that. It has it's benefits but one of the negatives is that I have to start earlier and the last one is 11:45pm so I have to stay up a little longer. However, John can just sleep through it.
The doctor gets back to the office on Monday so we have to wait until then to get his input.
My frustration level with this whole process is getting very high. It is just so hard to watch John suffer so much and feel like there is nothing I can do and we are always waiting for the doctor to be around to make some changes in a few days. But nothing ever really changes.
Tonight it was my night for respite. Margie and another friend, Pat from Bowen Island, came and picked me up and took me out for a steak dinner. We had a lovely time and deliious dinner.
John wasn't too bad while I was gone but got bad just before bedtime and asked to be put to bed early. However, he has yet to settle down ...ooops.... there goes his bell again.
One thumbs down for today (except for dinner!!!)
Wednesday, March 9, 2011
Wednesday, March 9, 2011
The struggle goes on.
John slept very well on his new mattress last night and said he wasn't sore this morning - until he started to move. That is a big improvement.
He seemed to be doing not as badly throughout the day as some days, especially noticable is the lack of saliva and phlegm - only a little not even covering the bottom of the suction machine cup as compared to 400 cc in the past. He still used the suction machine a lot but there was just not as much fluids.
I decided to try and give the feedings only after every other meds to see if there is a conflict there and it would show up that way. I had to start his feed earlier and end later than usual but it actually proved to be farily easy to do. I thought it might be helping until..... 6pm the "attack" began and it was a really, really bad one. From that time on, until he went to bed, he was gasping for breath, sweating profusely - like his t-shirt was wet - not damp; and his hands were shaking uncontrollably. He didn't want me to leave him because he was so afraid he would not get his breath, but it is so hard to just sit there and watch him suffer.
Once I got his sleeping meds into him, he suddenly pronounced that he was feeling better.
Now I have no idea at all what is going on or how to help it.
I will call the neurologist's office tomorrow and give them the latest data and see what they think.
The new hospital bed arrived today. Very similar to the rented one we did have, but much quieter when you put it up and down.
Two thumbs down because of this evening.
John slept very well on his new mattress last night and said he wasn't sore this morning - until he started to move. That is a big improvement.
He seemed to be doing not as badly throughout the day as some days, especially noticable is the lack of saliva and phlegm - only a little not even covering the bottom of the suction machine cup as compared to 400 cc in the past. He still used the suction machine a lot but there was just not as much fluids.
I decided to try and give the feedings only after every other meds to see if there is a conflict there and it would show up that way. I had to start his feed earlier and end later than usual but it actually proved to be farily easy to do. I thought it might be helping until..... 6pm the "attack" began and it was a really, really bad one. From that time on, until he went to bed, he was gasping for breath, sweating profusely - like his t-shirt was wet - not damp; and his hands were shaking uncontrollably. He didn't want me to leave him because he was so afraid he would not get his breath, but it is so hard to just sit there and watch him suffer.
Once I got his sleeping meds into him, he suddenly pronounced that he was feeling better.
Now I have no idea at all what is going on or how to help it.
I will call the neurologist's office tomorrow and give them the latest data and see what they think.
The new hospital bed arrived today. Very similar to the rented one we did have, but much quieter when you put it up and down.
Two thumbs down because of this evening.
Tuesday, March 8, 2011
Tuesday, March 8, 2011
Well, they say a change is as good as a rest and so today was a change, rather than a rest.
John had a one o'clock appointment with the eye specialist. She particularily checks on his eye health in regards to his diabetes.
But having the appointment to keep meant that I had to cancel the worker coming for my respite so no time to get shopping and things done.
Since I could not use Handydart for transportation, and the office is only 8 blocks away from where we live, I decided to push John in his wheelchair over to the appointment. Although there was a misty rain it was a nice walk and John enjoyed seeing lots of things he never gets to see.
The appointment went well, and his eyes are fine except that the cornea is drying out because he does not blink often enough (a condition of Parkinsons) so I now have to put eye drops in his eyes 4 times a day.
When the appointment was over it was time for his meds but when I went to give them to him, I found that I had forgotten to put the syringe in the meds bag. So I had no way to get the meds into the tube!!
I decided that the only thing I could do was wheel him home as fast as possible. However, on the way home I remembered that the Fraser Home Health office was nearby and that the nurses there might have a syringe.
So we went over there, and since he is registered with the home nursing service because they come in weekly to change the dressing on his tube feeding, they were happy to give me a syringe and I got the meds into him.
With that accomplished, we went to the Langley eye care centre which is in the same mall, and got his glasses straightened and repaired. On our way home from there, we dropped in at Value Village and John happily sat and looked through the DVD's - finding several he wanted to buy.
We were out for over 3 hours and all of that time he was fine
When we got home, he did well for awile but about 6pm he started to have diffiulty and within an hour he was back to all the old symptoms again.
So - I don't know if the new meds are working better or not.
It is very confusing at the moment.
My latest theory is that maybe the protein feeding is too close to the meds - because it does conflict with them. My reasons for thinking that is that while we were out today, although I gave him meds, I skipped the feeding because it is too hard to do. The same when we went to see the neurologist and he was fine then too.
But if so, it doesn't explain why that does not happen all the time - and why only in the later part of the day.
The other good news is that John's new mattress arrived today - finally.
So I am hoping he will have a better sleep tonight, and maybe, he will not be calling me in the night to move the cushion under his feet!!!
I am going to give today a 2 thumbs up for the morning and afternoon - but two thumbs down for the evening.
John had a one o'clock appointment with the eye specialist. She particularily checks on his eye health in regards to his diabetes.
But having the appointment to keep meant that I had to cancel the worker coming for my respite so no time to get shopping and things done.
Since I could not use Handydart for transportation, and the office is only 8 blocks away from where we live, I decided to push John in his wheelchair over to the appointment. Although there was a misty rain it was a nice walk and John enjoyed seeing lots of things he never gets to see.
The appointment went well, and his eyes are fine except that the cornea is drying out because he does not blink often enough (a condition of Parkinsons) so I now have to put eye drops in his eyes 4 times a day.
When the appointment was over it was time for his meds but when I went to give them to him, I found that I had forgotten to put the syringe in the meds bag. So I had no way to get the meds into the tube!!
I decided that the only thing I could do was wheel him home as fast as possible. However, on the way home I remembered that the Fraser Home Health office was nearby and that the nurses there might have a syringe.
So we went over there, and since he is registered with the home nursing service because they come in weekly to change the dressing on his tube feeding, they were happy to give me a syringe and I got the meds into him.
With that accomplished, we went to the Langley eye care centre which is in the same mall, and got his glasses straightened and repaired. On our way home from there, we dropped in at Value Village and John happily sat and looked through the DVD's - finding several he wanted to buy.
We were out for over 3 hours and all of that time he was fine
When we got home, he did well for awile but about 6pm he started to have diffiulty and within an hour he was back to all the old symptoms again.
So - I don't know if the new meds are working better or not.
It is very confusing at the moment.
My latest theory is that maybe the protein feeding is too close to the meds - because it does conflict with them. My reasons for thinking that is that while we were out today, although I gave him meds, I skipped the feeding because it is too hard to do. The same when we went to see the neurologist and he was fine then too.
But if so, it doesn't explain why that does not happen all the time - and why only in the later part of the day.
The other good news is that John's new mattress arrived today - finally.
So I am hoping he will have a better sleep tonight, and maybe, he will not be calling me in the night to move the cushion under his feet!!!
I am going to give today a 2 thumbs up for the morning and afternoon - but two thumbs down for the evening.
Monday, March 7, 2011
Monday March 7, 2011
Well, today was not much better than yesterday - except the sweating etc. started much earlier.
I talked to the nurse as the neurologist had told me to do, and she said it was too soon to tell if the meds were working because the old ones have to work their way out of his system - call her back on Wed. So two more days of suffering!
I called the company we are getting the bed and mattress from but only got the salemen's answering machine. left a message but he has not called back. John now has gauze patches taped on both hip bones to try and protect them as he sleeps as they are on the verge of developing pressure sores.
Tomorrow John goes for his yearly visit to the eye specialist. I had planned on using Handydart to take him there but when I called you apparently have to download an application on the internet, take it to the doctor to get it signed, and mail it in. So I will have to use other means tomorrow. If it was like today, I could have just pushed him over in his wheel chair because it is only a few blocks away - but I hear tomorrow is going to be rainy and nasty. I understand there are taxi's that take wheelchairs so we will use one of those.
I suddenly realized today that I would have to cancel the care worker for tomorrow and then I further realized that that means I lose my respite day. However, it takes a year to get this appointment so I am definitely not going to change it!!
Two thumbs down for today.
I talked to the nurse as the neurologist had told me to do, and she said it was too soon to tell if the meds were working because the old ones have to work their way out of his system - call her back on Wed. So two more days of suffering!
I called the company we are getting the bed and mattress from but only got the salemen's answering machine. left a message but he has not called back. John now has gauze patches taped on both hip bones to try and protect them as he sleeps as they are on the verge of developing pressure sores.
Tomorrow John goes for his yearly visit to the eye specialist. I had planned on using Handydart to take him there but when I called you apparently have to download an application on the internet, take it to the doctor to get it signed, and mail it in. So I will have to use other means tomorrow. If it was like today, I could have just pushed him over in his wheel chair because it is only a few blocks away - but I hear tomorrow is going to be rainy and nasty. I understand there are taxi's that take wheelchairs so we will use one of those.
I suddenly realized today that I would have to cancel the care worker for tomorrow and then I further realized that that means I lose my respite day. However, it takes a year to get this appointment so I am definitely not going to change it!!
Two thumbs down for today.
Sunday, March 6, 2011
Sunday March 6, 2011
John slept well for most of the night but woke me at 5am because his feet were sore and then went back to sleep - but I could not sleep any more so it has been a long day.
John was really good this morning and early afternoon. He was fine while I was at church and good enough that in the early afternoon I was able to slip out for a one hour meeting for a church committee I am on and he was fine.
I was beginning to hope the new meds were going to work today. Then at 3:30 he said he felt an "attack" coming on. From then on it was downhill - especially with the difficulty getting his breath, rigidity, and sweating. I had to change his t shirt several times because it was soaking wet from the sweat. I had to use the lift to sit him back up in his chair several times. The only improvement was there was not a lot of the congestion and he only ran the suction machine once in awhile. That was good because Margie came over and we all watched Les Miserables - the 25th Anniversay performance. And the suction machine is very loud so it was not interfering with the music!!
I will call the neurologist tomorrow and see what his nurse says.
I will call and see if the bed and mattess will soon be here.
And I will call the OT and see about getting the loan of a reclining wheel chair to see if it makes a difference.
So looks like I will have a busy day!!!
I will give it a one thumbs up for the first half of the day and one thumbs down for the second half.
John was really good this morning and early afternoon. He was fine while I was at church and good enough that in the early afternoon I was able to slip out for a one hour meeting for a church committee I am on and he was fine.
I was beginning to hope the new meds were going to work today. Then at 3:30 he said he felt an "attack" coming on. From then on it was downhill - especially with the difficulty getting his breath, rigidity, and sweating. I had to change his t shirt several times because it was soaking wet from the sweat. I had to use the lift to sit him back up in his chair several times. The only improvement was there was not a lot of the congestion and he only ran the suction machine once in awhile. That was good because Margie came over and we all watched Les Miserables - the 25th Anniversay performance. And the suction machine is very loud so it was not interfering with the music!!
I will call the neurologist tomorrow and see what his nurse says.
I will call and see if the bed and mattess will soon be here.
And I will call the OT and see about getting the loan of a reclining wheel chair to see if it makes a difference.
So looks like I will have a busy day!!!
I will give it a one thumbs up for the first half of the day and one thumbs down for the second half.
Saturday, March 5, 2011
Saturday, March 5, 2011
John had a good night last night but a terrible day today.
I do not think the new meds are holding at all. He is so rigid that he slides out of his chair continually - and getting him back in is difficult at best. I need a block on the bottom of the foot rest so his feed cannot slide off but if we put one on then the chair would not be able to be raised for him to get out so that would not work. We may have to consider getting a reclining wheel chair for him to sit in. But first I guess we will have to deal with the meds.
I spoke to the doctor today at the conference (our neurologist was the chief speaker) and told him about yesterday and he said to watch him over the weeked and call sharon (the nurse clinitian) on Monday if he was not any better. He does not seem to really realize what John goes through each day and how hard it is for him.
I enjoyed the conference. The doctor had lots of information on new areas of research that is being done into diagonsing and watching the progress of the disease. But nothing that will be even available for 5 - 10 more years. Nothing applicable for now.
The afternoon was a physiotherapist who talked about exercise and gave all sorts of exercises that can be done sitting down. I came how with a whole list of good ones for John - but he was way too sick to even talk to him about them today.
I am beginning to get very angry at the whole medical system - surely there is some way to supervise and get meds to work without having the patient go through all this agony!!! And surely there is some way to get a hospital bed and mattress when you need one without having to wait for weeks and weeks!!! (still no word on when they will be delivered) but he is developing a pressure sore on one hip so we need it urgently.And yes, I hve called to check on them.
TWO big thumbs down for today.
I do not think the new meds are holding at all. He is so rigid that he slides out of his chair continually - and getting him back in is difficult at best. I need a block on the bottom of the foot rest so his feed cannot slide off but if we put one on then the chair would not be able to be raised for him to get out so that would not work. We may have to consider getting a reclining wheel chair for him to sit in. But first I guess we will have to deal with the meds.
I spoke to the doctor today at the conference (our neurologist was the chief speaker) and told him about yesterday and he said to watch him over the weeked and call sharon (the nurse clinitian) on Monday if he was not any better. He does not seem to really realize what John goes through each day and how hard it is for him.
I enjoyed the conference. The doctor had lots of information on new areas of research that is being done into diagonsing and watching the progress of the disease. But nothing that will be even available for 5 - 10 more years. Nothing applicable for now.
The afternoon was a physiotherapist who talked about exercise and gave all sorts of exercises that can be done sitting down. I came how with a whole list of good ones for John - but he was way too sick to even talk to him about them today.
I am beginning to get very angry at the whole medical system - surely there is some way to supervise and get meds to work without having the patient go through all this agony!!! And surely there is some way to get a hospital bed and mattress when you need one without having to wait for weeks and weeks!!! (still no word on when they will be delivered) but he is developing a pressure sore on one hip so we need it urgently.And yes, I hve called to check on them.
TWO big thumbs down for today.
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