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.
Sunday, April 17, 2011
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.
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