Monday, January 31, 2011

January is over already. That was fast.
John slept fairly well last night until early in the morning. Then we went through the same thing as on Saturday morning - hiccups, coughing, congestion, weakness etc. He had  difficult morning although not as bad as Saturday. He did sit up in his chair, rather than staying on the couch, but has been using the suction machine almost constantly the whole day to get rid of all the phlegm and mucous. He says the secretions in his mouth are getting much worse.
Not a good day. Two thumbs down.

Sunday, January 30, 3011

Gor to church today! Hallelujah! Heard wonderful reports on church planting in Canada and the USA. Very encouraging. Had a new worker for John and she seemed to get along well with him. She even did a little bit of cleaning for me.
John had a better night last night and today - at least until this evening. The 6:30 pm meds did not click in and he had a lot of difficulty up until bedtime. By the time he was ready for bed things had settled down and he was asleep by the time the support worker left.
\One thumbs up for today but two thumbs down for tonight.

Saturday, January 29, 2011

Well, after three good days, I guess we had to expect a bad one - and we got it. John woke up at 3am with severe hickups, and once they passed, he began to cough and choke on a lot of phlegm. After sitting up for awhile he was able to lay down but we went through the same thing at 5am. By 8am he said he could not stay in bed any longer so I moved him out to the couch and he lay there using the suction machine to deal with all the mucous. When the support worker arrived at 9am he did not want to be moved, or washed, or changed. So she sat and had a cup of coffee with me while he tried to sleep.
The 12am worker was not able to do much more for him. He just felt too awful to even brush his teeth. So we just let him rest.
In the afternnon he did pick up and seemed to feel better for a few hours. Then the congestion and mucous all came back and by bedtime he was almost as bad as he had been in the morning. I gave him his sleeping pills early hoping they would settle him down, but he is in bed and coughing quite a lot.
Please pray he will sleep well.

Two thumbs down for today.

Friday, January 28, 2011

John had another pretty good day today - that's three in a row! It is always interesting to see the reaction of the support workers. The girl who came tonight was so thrilled that John seemed so much better - she had never seen him like that before. However, I think she thinks it means he is getting better whereas it really means he has had a good day and we are thankful for that.
Otherwise, nothing much happened today, except it is the start of Missionsfest in Vancouver and I must admit I am having a bit of a hard time because we are not able to attend. For over 10 years we spent all three days of the event there, minding the booths, connecting with people and listening to the speakers. John loved it because he could go around and see so many friends from Ontario and other places who were out here representing their work. He usually spent more time visiting other booths than representing at ours!!!
I am sure we will be able to borrow some of the DVD's and at least hear some of the speakers.

One thumbs up for today.

Thursday, January 27, 2011

John had a reasonable night last night although I did have to turn him several times. No word on the mattess and bed yet.
Today was a better day. John does not like me to say it was a good day, because as he points out, no day is ever a good day. But as his days go, this one was not bad at all.
I went downstairs for the Thursday morning coffee. I can't stay for all of it, but I get to visit with the ladies for about a half an hour.
Margie and I went to Curves tonight and got our exercise in. Margie is going to be quitting Curves in preparation for her trip to Gambia in the summer, so I will be going on my own pretty soon. It helps to have someone to encourage you to go.

One thumbs up for today.

Wednesday, January 26, 2011

John slept through the whole of night last night. When he woke up this morning he said he felt better than he has felt in a long time. He had a pretty good day all day.
Margie dropped by with a Tim Horton's coffee for me, and Mike Dobson, the theological student at our church, brought communion around and had a visit with us.
Gus called, and he has a really bad case of shingles so will not be staying with John for awhile.
But all in all, it was a good day.

One thumbs up.

Tuesday, January 25, 2011

One month ago it was Christmas. One week more and it will be February. Anyone else feel like time is absolutely flying by?
John had a terrible night last night - could not sleep and was up until 4:30 am. Then when he finally went to bed he was very uncomfortable and I had to keep turning him every hour and by 8:am moved him out to the sofa.
He did not have a very good day, although he was better than usual at bedtime tonight.
Today was my first full 4 hour (well, 3 hour and 50 minutes is what you get) respite. Had a girl's day out.
Margie, Laura Wilson (visiting missionary teaching at Gateway this week) and I went to Abbotsford and had lunch. Also got some books at House of James, and a stand for John's TV so it is up higher where he can see it better at the MCC.
Tonight he was asleep as soon as we turned the light out.
Please pray he will sleep all night - and me too!!

One thumbs up for the day out, and one thumbs down for John's continued struggle for the meds to kick in.

Monday, January 24, 2011

John had a disturbed sleep last night, had to be turned several times because his hips and back were sore. Today was a bad day - the meds were not working well at all and he spent much of the day just laying on the sofa listening to music.
Tomorrow is my 4 hour respite and I had planned to go with Margie to Abbotsford, but if he is as bad tomorrow I will not be able to risk going so far away.
Please pray he will have a good day tomorrow.

Definite two thumbs down today

Sunday, January 23,2011

John slept through the night until 6am when he needed to be turned because he was so sore.
Please pray we will get the decision on a mattress from the insurance company this week!!

No worker turned up at 10:30am again today so I could not go to church. I cannot talk to scheduling until the office opens tomorrow but I will try once again to get this straightened out. Last week the girl promised she would put on my chart that the 10:30 Sunday time could not be changed. But the worker arrived for an 11 - 2pm shift. I don't really need one for 2 hours if I am not going to church. She was new so I could not just run out and arrive at church 15 minutes late.
Please pray that they will schedule Sundays properly so I can get to church.

Once she was all estabished in the routine etc, I decided to do some grocery shopping and at least use the time alloted to us. However, I no sooner got to the store than the worker phoned to say that John was slipping out of his chair and she could not get him back in. So I had to come home again. Poor girl was really concerned as John was having a bad attack and I think it scared her.
The next lots of meds worked better and John did fairly well from then until 10pm tonight. The 9:30 meds did not click in either and he was in a pretty bad way for the 10pm worker. She is one we have for 3 nights in a row each week (most workers we see once a week) so she knows John better than most. It looks as if he has a few more shingles spots on his back and he is still jumping nearly up to the ceiling whenever we even gently point at a spot or try to put ointment on it.
I gave him his sleeping pill early again because he was in such distress and by the time we had him ready for bed the eyes were shutting and he was asleep before the worker even left. Hopefully he will sleep until monring.

Two thumbs down for today.

Saturday, January 22, 2010

John had a much better day today - still some rough sections, but much improved. He was able to get his hair washed with no real problem.
This morning the support worker arrived with a bouquet of flowers and an angel pin for me. That was a lovely way to start the day. Another worker dropped by with an inflatable mattress she uses for camping for us to try on John's bed. It was too narrow and too short to work but I really appreciated the thought.
Debbie came by and picked up a hat I had been knitting for her. Margie also dropped in and we managed to go out and have a quick supper together.
Then my neighbour came over because she is going away on a trip so she gave me her milk, coffee cream, and a lovely pan of flowering spring bulbs that one of her family had given her.
So this has been a day of wonderful surprises, as well as a better than average day for John.

Better make it a one thumbs up!!!

Friday, January 21, 2011

John had a restless night last night, had to turn him because his hip got so sore. Today was a little better than the last few days except for the problem with the saliva. Seems like he has been stuffing kleenex itno his mouth to sop up the saliva the entire day. he used the suction machine for awhile but his arms get tired holding the wand in his mouth.
Got the final paper work today for the purchase of a hospital bed and Vicair mattress. Sent it in right away to our extended medical and we will see how much they are willing to cover.
Please pray that they will review it quickly and grant John the majority of the cost for both items.
The doctor has confirmed that John has a mild case of shingles. So I went and got meds for that today. Hopefully they will prevent a bad attack like the last time.
Otherwise things have been quiet today.

Not a thumbs up or thumbs down day

Thursday, January 20. 2011

I thought John had a pretty good day today. He was well enough to have his hair washed in the morning. He had no major "attacks" with the meds not working. But when the support worker came tonight and asked him what kind of a day he had had, he said is was terrible. So obviously his view of what makes a bad day for him, and mine just looking on, can be very different.
He had a terrible time last night at bedtime and was definitely not as bad this evening. He is still jumping out of his skin whenever certain spots on his back are touched.
I attended the weekly coffee hour in the condo today and we celebrated one of the resident's 100th birthday. She is bright and physically strong, her only ailment being failing eyesight. Apparently her doctor once told her that she would live to be 100 and he would dance at her birthday party. He got to do that last Saturday when her family had a big party for her. We asked her how the dance went and she said the doctor us a very good doctor but a poor dancer!
Woke up to snow this morning but it had turned to rain before noon. Margie and I braved the rain and went to Curves tonight.
The OT finally called me re the documentation for the hospital bed and air mattress and I hope she will have it ready for me by tomorrow. Found out tonight Gateway's fax is broken so I will have to go somewhere else to fax them in.

From John's point of view this was a one thumbs down kind of day.

Tuesday January 18, 2011

Today was similar to many days lately - John had times he did not feel too bad and times he did.
Starting at 5pm the meds were simply not holding until the next ones were given so finally I gave him some extra meds and that seemed to help. But it means he did not get his 6 cans of feed today.
For me, it was the first day the workers were allowed to give John his meds and feed so that I can have 4 hours repite. I had to train them today so I only got two hours and 45 minutes but even that was great. I used some of the time to use the birthday gift John had given me - a wonderful massage at a nearby spa! I an look forward to a full 3 hours and 50 minutes next Tuesday.

But, I have to give it one thumbs down today for John -

Monday January 17, 2011

John had a bad night last night - and both of us are very tired today. However, he did have a better day today. Although he had a bit of a bad time this evening the rest of the day was quite good.
No signs of any more little red dots so hope that means the shingles scare is over.

One thumbs up for today.

Sunday, January 16, 2011

It was a disappointing day today. John woke up feeling poorly and had a bad day all around. The support worker did not arrive at 10:30 as she was supposed to so I did not get to church.
We still do not know what the few little spots are on John - there were a few more today. But he is not experiencing any pain or discomfort so we still have no idea if it is shingles or not.
The bright spot was that Margie came in the afternoon for tea and stayed and had supper with us.
John was especially bad at bedtime so I gave him his sleeping meds early in hopes that they would help him to get to sleep earlier. Suddenly he said, I am feeling better, and his eyes opened wide and he smiled. Did the meds suddenly kick in? or did the sleeping meds relax him enough that the meds worked better? Don't know - but I do know that the best he felt all day was in that few minutes before he fell asleep.

Two thumbs down today

Saturday, January 15, 2011

John did not have a very good day today. The meds were just not working a lot of the time. At one point he was so rigid that I could not get his leg to bend at all - I must have worked on it for 5 minutes before he could finally make it move a bit and the knee began to bend.
We had arranged with the noontime worker that she would wash his hair today but since he was not feeling well, I suggested we change the plan. However, John said his head was itchy and go ahead and do it anyway. He got through it, but as soon as we were done, he did not even want it dried or combed - he just wanted to lay down and he quickly fell asleep and slept for an hour or more.
When we put him to bed tonight he really cringed and jumped when we touched his back, and there are two little red spots on it. I am praying that he has not got shingles again (he had them about 4 years ago) but the support worker was concerned enough that she called the office and they have put out an alert to all the workers and any that have not had chicken pox will not be allowed to come until he is cleared.

Really have to give it a two thumbs down for today.

Friday, January 14, 2011

John  had a little better day today. But he did not sleep well last night and was very uncomfortable and sore throughout the night. I was up several times to him By 6am he asked me to move him out to the sofa and he slept better there until the support worker arrived at 9am.
This afternoon we had lots of company. Frank was a friend of John's who used to come and pick him up and take him to Full Gospel meetings once John got that he could not drive there himself anymore. Through that connection, we met Frank's wife Pat, and she helped out for awhile with the ESL at Gateway. Frank has had several professions and one of them was as a hair dresser. So he very kindly came today  and cut John's hair and mine.He has offered to come once a month and do that for us. I never cease to be amazed at the wonderful ways God takes care of His children.
Margie also brought Mike and Laurie Boling over to meet us. They have just arrived at Gateway to join the staff. It was really nice to get to know them a little bit. We showed a part of the video taken at our graduation for WEC in 1998. It gave them a chance to get to know John in a way they will never see him now. It was wonderful - and sad - to see the "old" John up there talking and making everyone laugh.

Although John had a bit of a hard time near bedtime the rest of the day he felt pretty good so we will give it a one thumbs up for today.

Thursday, January 13, 2011

Another day similar to the last two. John was never really good and had one bad spell at around 8pm which lasted for close to an hour  but then he was a little better.
The noontime support worker helped me to get him on our bathroom scales. He could not really stand on them by himself so we had to let go and grab again quickly and so I am not sure we got a very accurate weight - but even if we were only close, he has lost a lot more weight. The weight we were getting was about 98 pounds so we figure he may be just over the 100 pounds. Three months ago he was 113.
I will call the dietician tomorrow to see if we can add  anything else to his feed to get more calories into him. But I suspect the real problem is the times I have to skip feedings because the meds are not working and he needs more meds in place of the protein drink.
I will ask if I can give him more than the 6 feedings a day on the days he is good - after all, there are 11 meds so theoretically I could give him 10 cans of Jevity if I gave him one in between every set of meds.
I may have to ask the neurologist if that would be too much protein for him as that is what nulifies the meds.
The mobile lab came and took his blood tests today. She says they will be coming every 4 months from now on to do that. Very quick and easy. When I think of the hours we have spent sitting in the lab waiting to have that done........

Here is a picture of John in the lift we use to move him around

One thumbs down for tonight.

Wednesday, January 12,2011

Yes he did, No he didn't,  Yes he did, No he didn't, Yes he did, No he didn't,.... have a good day.
Today was much like the last two. Although he did not have any really bad attacks, he never really felt good either and always seemed just on the edge of getting worse.
He did not sleep all that well last night and I was up several times in the night with him - part of the problems being he was stiff and sore without the special mattresses he had slept on for the past 5 nights.
I am waiting for paper work from the OT in order to start the process towards getting a mattress.
Tomorrow morning the mobile lab is coming around to take his blood work etc. Great idea.
We had some snow overnight last night but I hear it is going to rain tonight so it will not last long. I did not have to go out anywhere so I just enjoyed the beautiful scenery it made.

I am not sure how to rate today - I would give it a half a thumbs down if I could. So instead

Tuesday January 11, 2011

Today was not a good day for John. Although he did not have any really bad crashes, he was never good either. Tonight he has been battling a lot of phlegm and congestion.
The demo mattresses were taken back today. I was told I could rent the Roho until we got our own if I wanted - but when I asked the price I was told it was $150.00 a month per section (there are 4 sections). So I declined the offer.
On the upside, the Home Care has decided that they will train a couple of workers to give John his meds and feed via the tube.  It has not been an easy  thing to get into place because they kept insisting that all meds had to be in blister packs and they had to open and distribute the meds from there. All his other meds are in blister packs but not the Parkinsons ones because there are just too many pills - so they come in big bottles and I put them into 11 liittle containers for the 11 times each day. After a lot of back and forth discussion they finally decided that would be OK.
This will begin next Tuesday, and I will have from 12pm to 4pm to go out and do whatever I need, or want to do. It will give me time to have lunch with a friend, or shop in Abbotsford, or go and help out at Gateway.
I don't want it to sound like I am feeling confined or stir crazy, because I am not. We are actually quite used to the daily schedule. But just having a little more time once a week will be helpful to me - and good for John as he tends to look to me to do most things for him - even when the support workers are here.

As far as John's day went - one thumbs down.

Monday, January 10, 2011

John slept well last night but did not have as good a day as he has had for the last 5 days.  I had called the doctor last week but the secretary said we had to come in to see him, so this afternoon Margie came over and helped me take him there. The doctor said he could have looked after everything on the phone and we did not need to come in - he has arranged for a mobile clinic to come in and do the blood work etc. that John needs done rather than go to the medical clinic. He said he would talk to his secretaries and tell them he will call us and then determine if we need to come in. John had a bed "attack" while in the doctor's office and he was quite concerned.
John has decided he likes the second mattress, the Vicair, better. I called the OT and she will be over in a few days to start the process to see if our extended medical will cover the costs.

Have to give it one thumbs down for today.

Sunday, January 9, 2010

John tried the second mattress last night but did not have as good a sleep. Don't know if it was the mattress or just a  bad night. It was after 3:30am before he went to sleep. However, he had another good day today. He was bright and alert all day. At about 7pm Junior Vieira, a former Gateway grad, dropped in to say farewell as he is going back to Brazil tomorrow. Right after he arrived, John began to have a bad attack so that it made it impossible for John to visit or say goodbye properly. He was still in some distress when the support worker came to put him to bed. He wanted her to hurry up and get it over with. He went to sleep almost immediately after he was tucked in. Tomorrow we have to decide on a choice of a mattress and then begin the process to see if we can get one.

One thumbs up for the day and one thumbs down for the evening.

Saturday, January 8, 2011

John had three really good days in a row and today was not quite as good - but not bad. Now let me say that if you asked John he might not agree with that statement. My way of judging the situation is that he has had no major problems with the meds not working when they should. His eyes have been wide open, he is smiling and joking and showing more strength when he is moved around. However, from his standpoint, he is still having a lot of problems with excess saliva and some with phlegm and that really bothers him.
Today for the first time he used the suction machine we got to help with that problem and at least it meant less kleenex got stuffed into his mouth!!!
Tonight we switch from the roho mattress to one called Vicare. it is quite different from the roho but is still supposed to be good at preventing bed sores. It is also cheaper. So he will try it for two nights and then we will see what we think.
I have some good leads on jersey knit sheets if we go with the roho.
John slept through the entire night on the roho both nights he was on it. He has not settled so quickly tonight so I am not sure if that is anything to do with the mattress or just that his mouth is bothering him.

Although it was not a really good day today, put along with the last three days, I have to still give it a one thumbs up because it is still an improvement on many of our days.

Thursday, January 6, 2010

Happy Epiphany everyone.
John had a restless night last night and was very uncomfortable by the time the support worker arrived at 9am this morning. It may turn out to be too late in the morning for him. But I sure enjoyed sleeping in until 8am!
The OT came today with two mattresses for John to try - a Roho mattress (cost about $4000.00 plus the cost of a hospital bed to go with it) and a Vicair which is a little less expensive. He will try each for two nights and then see if they make much difference and which one he likes best. I have found some on Craig's List for sale too but you are still looking at thousands of dollars and our extended medical will not pay at all for anything second hand.
So we still will have to work out what works best for us.
When we rented the hospital bed John is currently using I had to get some single bed, cotton sheet sets from Value Village because all I had was double bed sheets. Today the OT said not to use cotton sheets, I have to have jersey knit sheets so that they will give with the mattress. So far I have not even found anywhere that sells them except on line from the USA - there were not any at Value Village. I may eventually find some turn up there.
John had a pretty good day again today. The afternoon worker was one that had only seen him at 7am up until now and she could not get over the difference in John. I tried to explain that it all depends on whether the meds are working or not, but she was sure he had improved greatly.
He had a much better evening tonight as well - some problems with a lot of saliva but otherwise pretty good. Once again the support worker at 11pm commented on the difference in him. He went to sleep immediately tonight.

One thumbs up for today with no thumbs down PTL

 

Monday, January 3, 2010

John slept through the night last night, but did not feel very well when he woke up this morning. He was not good at either the 7am or 11am visits from the support workers.

However, in the afternoon he felt a little better - he said not as good as yesterday - but by evening he needed to feel OK - because he and Margie had planned a surprise birthday party for me.

In the morning Margie came over with a Tim Horton's coffee for me - and gifts she had gotten for John to give to me - roses and a gift certificate for a massage at a spa just a few blocks away.

She said she was going to bring dinner in for tonight so don't cook anything. I asked if she was going to stay for dinner and she said, oh yes, she wouldn't want me to eat my birthday supper all alone. So I set the table for 2 of us.

She arrived at 5pm with a very large roast in a crock pot. She informed me that a couple of others were joining us and they were bringing the rest of the meal. So we set the table for six The bell rang and in came 3 of the Gateway staff. We were getting things put together when the bell rang again - and there were 8 more staff. So 14 of us crowded into our little apartment for a wonderful roast beef supper, forget about everyone sitting around the table!! birthday cake, and then a prayer and praise session. I can't remember when I have had such a nice birthday.

All the kids and grandkids called as well to wish me a happy birthday as did several friends. I was a busy girl!!!

John was really blessed by having so many good friends here.  

Thank you for all the many birthday wishes - e-mail, facebook, snail mail and in person. Each one of you have blessed me. This was so much fun I think I will have another birthday next year!

One thumbs down for this morning

 but two thumbs up for the party!!

Saturday, January 1, 2011

A new year,,,,
Not a good start for John. He had a poor day today. He did not feel well when he woke up but was able to go back to sleep. The 7am helper moved him to the sofa and the 11am helper moved him back to bed and he stayed there until 2pm. When he got up he was not doing well and it really did not get any better all day. Although he was not having the really severe side effects, he was never without them as well.
Debbie came and visited this afternoon for awhile.
The 11 am worker arrived at 10:30am and the 10pm worker arrived at 8:30 pm so things were really messed up, The morning mix up was not a problem but the evening one was because John does not get his final meds until 11pm so going to bed at 8:30 is way too early. It was a new worker we had not met before but he was really nice - and really big. He could pick up John with no effort at all. So he got him ready for bed but then put him back in his chair. That meant I had to get him into bed by myself at bedtime but we made out OK.

All in all, one thumbs down for today.