Friday, December 11,2010

John had a good night last night in spite of the difficult time he had at bedtime. Today was the very best day he has had in a long time. The meds worked as they should the entire day, and his mouth was not bothering him half as much as usual. The workers all commented on how much more alert he was and how he was more able to help them with dressing etc.
The times I had to move him with the lift went well too but because the meds were working, we did not have the problems of him getting rigid and sliding out of his chair nearly as often. I only had to reposition him in his chair with the lift once. Margie was over for awhile and she helped me sit him up once as well.
So the day went very well ....until 20 minutes ago.
John was in bed, the worker had gone home, and suddenly he rang his bell. When I got there I discovered that the cap had come off his feeding tube and the stomach contents were all over the bed and John. So that meant getting him up out of bed, changing him, changing the bed - so much for resting my back.
However, he is now back in bed and hopefully will sleep through the night.

Please pray for more days like today.

One thumbs up - I think I might have given it a two thumbs up if the last episode had not happened!!

Thursday, December 16, 2010

John needed attention at 5am this morning which was OK - he seemed wide awake. But when the support worker arrived at 7am we could not wake him up. Finally he wiggled a hand and kind of opened one eye. She washed and changed him and we moved him to the living room sofa in the wheel chair. At 10:30am he woke up and said, how did I get here? He has no memory of the early morning stuff at all. He really was sleeping.
The 11am session went very well for the first time. He was acutally able to get his hair washed and everything. Maybe beause he was fresh from sleep.
Dave and Manuel came down from Gateway and removed our bed ready for the hospital bed which arrived at 10:30am
The early afternoon went well too and I even lay down and had several naps during the 45 minutes between med and feedings.
A man came to talk over some business with us at 3pm and John was just starting to feel poorly so had a hard time taking part in the conversation. He began to get rigid and slide out of his chair, so the kind man helped me lift him back up and into the chair 3 times during his vist. With two people it is easier to haul him in manually than to use the lift.
Things went downhill from there. Once our visitor had left, I did have to use the lift to get him sitting upright - about every 15 minutes most of the evening.
When the evening support worker arrived, we put John to bed but he was in bad shape by then. It was difficult to get him washed and changed and he seemed quite upset although he could not talk to us.
I don't think he is very happy with the new bed.
I have spent from 10:45 until now (midnight) just trying to get him setteld down as he was extremely agitated but could not really tell me what to do to help him. I finally gave him a second sleeping pill and he has gone to sleep.
He has developed pressure sores on right his ankle and foot so we told him he has to lay in bed on the opposite side to what he usually does and I don't think he likes that either. But he didn't want a pillow under his foot so this seemed the best solution.

Please pray that he will get used to the bed and sleep well.
Please pray for healing for my back which is quite sore.

I'm going to give it a two thumbs down because tonight was soooooo bad.

Wednesday, December 15, 2010

Count down: 10 more days until Christmas - 17 more days until 2011 - time is hurtling past!

I guess it would have been too much to expect two good days in a row. Today was not good. The early morning session went OK but the 11am was a repeat of several other days whenJohn was just not good enough to get the stuff done then that we had hoped for - ie shower, hair washed, shaved, dressed, moved into his chair etc. Today he got his eyes washed and tucked back into bed.
That meant, of course, that I had to get him up when he felt ready. Used the lift and it worked quite well.
Tonight John was really having a rough time especially with the rigidity - which means sitting in his chair.
I was boosting him back into a sitting postion about every 10 to 15 minutes. I did it with the lift and the good news is that it does not strain my back and it works great. The downside is that it is at least a 5 minute proceedure each time.
However, by 9:30 he was practically out straight and in great distress. He said he could not wait for the support worker to get here and he needed me to put him to bed right then. He was feeling so weak that he had great trouble standing in the harness long enough for me to get him to the bedroom. Then transferring him to the bed was difficult with only me here and I still ended up having to just physically pull him into bed - an action my back objected to strenuously.
Tomorrow a hospital bed will be arriving for John. Means I will be sleeping in the spare room, but will make looking after John and getting him in and out of bed much easier.

So, a one thumbs down day today

Tuedsay, December 14, 2010

Today was a much better day for John. The early morning visit by the support worker went well. She has been doing this work for 10 years and was really good. She also came back for the 11am one - and since John was feeling better she was able to get a lot of things done, like teeth brushed etc that have not been done in awhile because he was too sick. And she did it all amongst lots more confusion. First the man arrived with the lift - then the Occupational Therapist arrived to show us how to use it...and at the same time Dave and Manuel arrived to finish up the wood floor in the bedroom. As it turned out I really needed them as the rug in the living room had to be removed, and the sofa had to be put up on 6 inch blocks so the lift can slide underneath it. Sure hope I don't hurt myself climbing up and down on it!
However, it all got done. Now I am supposed to get a suction machine to help with all the saliva in his mouth - so far I can only find them to buy but not rent - and more and more of the workers are saying I should have a hospital bed for him.
In the afternoon Gus came and stayed with John for an hour while I ran out and did a few things I needed to do. Then two of our former students, both from Brazil, came to visit. Gilmara is not on staff at Gateway, but Junior just arrived two days ago from Brazil. It was so good to see him.
John had a better evening than he has had in some time. He needed to be sat up in his chair several times and using the lift worked quite well. It takes quite awile to get him into the harness and hoisted up and sat down again, but otherwise it worked much better than trying to haul him up myself.
Unfortunately, when bed time came, John had just begus to feel badly. And when we got him onto the lift, he suddenly collapsed and could not stand up even with the sling holding him. So we had to quickly put him in the wheelcaird and then put him into bed with the two of us moving him rather than using the lift again. He was not feeling too well during the preparation for bed, but he was asleep almost right away once that was done.
I am feeling better about the help. I also have someone booked for 2 hours on Sunday so I will be able to go to church again!
Although John did not have much voice and did not talk much today, he was able to make a couple of jokes with the workers, and actually wheeled himself in his wheelchair over to supervise what Dave and Manuel were doing.
It was so good to see him more at peace and not in such torment.
One thumbs up for today.

Monday, December 13, 2010

I am sorry to report that this was the worst day yet. John did not feel as well at 7am - he also had a male support worker who was not as gentle and kind as the ladies are. So the morning ritual was more trying than usual. The day went downhill from there.
The meds did not work virutally at all during the whole day and John was in really bad condition.  So once again the 11am support worker could do little to help him. The evening worker had a difficult time getting him ready and into bed because he just could not do anything to help himself. We finally got him into bed and settled for the night - and then the valve for the feeding tube malfunctioned and the stomach contents made a big mess in the bed so we had to change everything again and then settle him down again.
On the bright side, a wheel chair was loaned to us today from the Lion's Club and we can keep it as long as we need it. The lift arrived in the morning - but we have to rent it monthly!
It was so hard to watch the suffering John was going through today and not be able to do anything to help him.
He seems to have gone off to sleep now and I really pray he will sleep through until the morning as I am sure his poor body really needs a rest.

At least two thumbs down for today.

s

Sunday December 12, 2010

John had a very bad day today. The 7am wake up (well he never really wakes up -and wash etc went well, and then he went back to sleep. When he woke up again he was in a dreadful state and it did not get much better all day. Once again the lady who came in at 11am could do almost nothing for him. She washed his eyes and put cream on his face. He says that right now each day is worse than the last. Today he had no good times at all. Since the worker was scheduled to come for 11am I could not get to church - but he was so bad that I would not have been able to go anyway.
Margie came and visited this afternoon and stayed with John while I lay down for a nap. That felt really good. Then we worked on John's room and got a bed rail and a pole installed to help him get in and out of bed ( we had them before but because of the flooring and lift he will now be getting in and out on the other side so we had to switch them to that side.
Also experienced a small miracle - Canada Post delivered a parcel to us on a Sunday!! It was a beautiful big box of 5 different kinds of oranges from my Aunt Dot in Florida. Yummy.

A two thumbs down day.

Saturday, December 11, 2010

Well today went a little better. Once again John was OK for the worker who came at 7am (mind you he mostly sleeps while she baths and changes him) but by about 9am he had another really bad session. It was another time when the "attacks" seemed to come in waves - he would almost get to sleep and another one would start. I was aftraid that our 11am worker would be unable to do anything for him again.
She arrived at the same time as Dave Knapp (maintenance at Gateway) and Manuel (German volunteer) who had come to put the wood down on the carpet for the lift and to move the bedroom furniture etc I was aftraid we would have total confusion like yesterday but somehow it all worked out. Dave and Manuel waited until the worker had John cared for and  by the time she was done, fortunately. John was a little better and was able to sit up and not be put back to bed.
Tonight went welll.
There are still a lot of complications between the 11am and 10pm workers - because I still have to move him during that time. Mostly it involves trying to get him sitting upright in his recliner chair when he slides down. I am hoping the OT is going to have some solutions for that.
Margie came and stayed with John this afternoon while I went out and did some much needed grocery shopping. Then Debbie dropped in so we had afternoon tea which was very nice.

By the way, a note on another subject - to everyone I e-mailed our Christmas letter to- the address and phone number in the blue box  at the top are wrong. It is correct on the e-mail itself.
I guess it was a neutral day.