Friday, December 31, 2010

Last time I will write 2010!
Today was much the same as yesterday, John was good in the morning but in the evening he was not good and by the time the support worker got here at 10pm he was in quite a state. He is having more trouble with cramps in his feet when the rigidity sets in. However the OT did show me how to "break" the rigidity in his legs and that seems to work for the feet as well.
Hopefully he will get to sleep soon and when he wakes it will be a new day - and a new year!

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

Thursday, December 30, 2010

The year is drawing to a close! That was quick.
John slept well last night. When the worker came at 7am we had a hard time getting him awake. We had him sitting on the side of the bed ready to transfer into the wheel chair and he was snoring (softly) !

When he woke up at about 10:30 am he felt very good and was up sitting in his chair eating ice cream when the support worker arrived at 11:00 am. Because he felt so good, we were able to get his hair washed again. In the afternoon Gus came and stayed with John while I went and did grocery shopping. When I got back Margie was here! She had a nice cup of tea waiting for me. She said John had been talking to her quite a bit. She stayed for supper and then we watched the Christmas special of the Mormon Tabernacle Choir which was wonderful
At 8pm, John suddenly started to get sick and he had quite a bad attack. Although I even gave him some extra meds, it lasted until we got him into bed and he went to sleep. It was disappointing after such a good day.
I am going to give it one thumbs up for today - and two thumbs down for tonight.

Wednesday December 29, 2010

Jihn slept well last night but had a very bad time this morning. The meds were just not holding and the 11am worker ended up doing not much more than put him back to bed. I sat and read to him for a kong time. The Occupational Therapist was due to come at 1:30 pm so he decided to get up and be in his chair by then. He actually began to feel a little better before she arrived although he was not feeling well enough to talk to her very much. She came to decide if we needed a different chair for him to sit in so he won't slide out when he goes rigid. She decided to try and adapt the chair he has by putting pillows under his legs and basically all around him - to hold him in. It seemed to work OK tonight. So maybe that will be all he needs. However, she feels he needs a better mattress for his hospital bed. We are currently renting the one we have but to get the kind of mattress he needs to prevent bed sores etc. we would have to buy it. Over $3,000.00 just for the mattress without the bed. I have to check with our extended medical and see what they will cover. I hope it is a lot!!
Just as the OT left, the theological student from our church arrived and visited John and gave him communion. John seemed to feel a little better after that and the meds seemed to hold well until just before bedtime. However, he got to bed, and went to sleep quite quickly tonight so it was not as bad as some nights.
But overall, one thumbs down for the day.

Tuesday, December 28, 2010

Today was much the same as yesterday - not really good, but not really bad. The home nurse came today and changed the dressing around the tube. It is doing well. The fellow we had yesterday morning who was really rough, managed to tear the skin on John's left arm when he took his undershirt off. I had stuck a bandage on it but the nurse thought it should be left out in the air to dry up. So she took the bandage off and next thing I knew he was bleeding all over the place. It took a long time for enough of a scab to form for it to stop dripping all over the place. I am afraid it will open up again when he goes to bed tonight.
I have been told by the nurse and several workers to make sure that I report it, but I called the supervisor three times today and there was no answer.
Several of the workers are starting to talk to me now and tell me their stories. The young woman who was here tonight really started to unburden her heart to me about something in her past. I think the Lord is beginning to open doors for ministry to some of these workers. I am interested to see what He has in mind.
Tonight I was able to share with her the importance of forgiveness - for ourselves as well as others.
John has not had any major attacks today but the saliva in his mouth has been really bad. He has soaked three squares of terry cloth with it just since I put him to bed. I think he has gone through a whole box of kleenex earlier tonight.
I have to give it a one thumbs down day in spite of no major incidents.

Monday, December 27, 2010

Not a great day - but not a really bad one either.
Got up at 6:30am ready for the support worker to arrive at 7am. Nobody showed up. They arrived at 8am instead but the office had not told me they had changed the time. Apparently it was just for today because when I phoned they said it would be at 7am for the rest of the week.
When the worker arrived it was a man. We have had him once before. He is really rough and today he even tore the skin on John's right arm in handling him so roughly (his skin is very fragile). So I am going to ask not to have him again.
John has felt on the verge of having a bad attack all day but it never really materialized. I told the 11am worker that his hair had not been washed in weeks and he really needed it. So she improvized and managed to give it a good wash. That was a real gain.
Most of the later afternoon and evening he has been quite rigid even if the synptoms were not all there. When he is rigid he slides out of his chair so it meant that every half hour i was getting him up and into it again. It is much easier with the lift although it is quite a process. The lift and the hospital bed are the two things that are really helping me the most when I am on my own to look after John.
Ted and Sabryna called me on Skype today. They have a camera with their computer so I was able to see my new greanddaughter, Shyla, with it. She is a beauty.

Hard to rate today.

Sunday, December 26, 2010

John had a  good day today - until tonight,
When the 7:00am lady came for his morning care, he was deeply asleep. He has been sleeping better at nights. He was snoring through much of his sponge bath, and even sitting in the wheel chair while we were moving him to the sofa. When he did wake up at 10:00am he wanted to know if he had been washed yet today. So I guess he had a really good sleep. And he felt pretty well at that point.
I have asked for a support worker on Sundays from 10:30am - 12:30 pm so that I can go to church. Today she did not come for 10:30. Margie and her Uncle Jack were picking me up for church at 10:45 am so I had to tell them to go on without me. I thought she would be here for the usual 11:00am and I would go then. She did not come then either so finally John said he was feeling good so I should just go anyway. I got to church by 11:25am - and apparently she arrived about that time. I will have to phone the office tomorrow and get the times straightened out.
Tonight John began to have an "attack" about 9:30pm and by the time the support worker got him into bed a little after 10:00pm he was having a severe one. He was feeling quite awful and after she left he asked me to just sit with him for awhile until he settled down. I have just left him but he has not gone to sleep yet. He is a little quieter.
I have had a bad sore throat all day so I hope it does not develop any more. Lots of vitamin C, Echinacea, and gargling with salt water - hopefully will take care of it by morning.
I thought I would be able to give today a thumbs up but now I don't know what to give it because of this evening.

 

Saturday, December 25, 2010

Merry Christmas everyone!
John had a very good day today - not one episode with the meds not working. He had some discomfort sitting in his wheelchair at the dinner table and had to move back to his chair but otherwise things went very well. Margie and her Uncle Jack came for dinner. Talked to all the kids and grandkids on the phone - although John had no voice today and could not talk to them, he listened and enjoyed hearing from them. His brother Jim also called to wish us a Merry Christmas as did several friends. It was an enjoyable day.

So two thumbs up for Christmas Day. Hallelujah.

Friday, December 24, 2010

Christmas Eve!! This is the first year I can ever remember not being able to go to church on Christmas Eve. Somehow it is not the same - I really missed it.
John had a very bad day for most of the day today. He was particularily bad at the 11am visit from the support worker so she could do almost nothing for him. She was very concerned having to leave to go to her next client. However, although the morning was awful John felt some better this evening which helped. I am documenting all this very carefully for the neurologist as he asked me to do that. I am also going to make a video of him when he is really bad so the doctor can see what is really going on.
Helen, Gus' wife, neighbours in our condo, brought me down a plate of their Christmas dinner today ( a Polish meal) which was delicious, Tonight Kim and Paul (Gateway students from the UK) and Margie dropped in for awhile. John was feeling good enough to enjoy their visit.
His bed time went very well and he fell asleep quickly.

Still two thumbs down for most of the day.

Thursday, December 23, 2010

Today was not a good day at all. John only had a few hours in the afternoon that he felt fairly good - fortunately that was during the time Gus came to stay with him while I ran out to London Drugs to get refills on some of his meds.
Tonight was terrible. By 10pm, when the support worker arrived,  he was in really rough shape - and was choking and coughing up a lot of phlegm so that he felt like he was going to choke and not be able to breath. He had a REALLY BAD time at bedtime. The support worker was so concerned with his condition that she did not want to leave me alone with him but of course she had to go when her shift was over. I had to stay by his bedside until about 20 after 11 when he finally went to sleep (I gave him two sleeping pills at 10:45pm)
The OT is coming to see us again on the 29th - she thinks we will need to buy a reclining wheel chair for John because he keeps sliding out of the chair he has now when his muscles go rigid - and while the lift works great when I can get him into it, it is almost impossible to get his hooked up to it when he is lying half way on to the floor!!! His legs are out so straight I can"t even get it near him to fasten him in.
I baked Christmas cookies today so add that to the struggle tonight and you will understand when I say I am VERY tired. 

Two thumbs down.

Wednesday, December 22, 2010

John had a good night last night but then came the morning... He did not feel well at all during the morning. When the worker came at 11am he was feeling too poorly to even have his teeth brushed. We ended up just putting him back to bed. He stayed there for about an hour and then decided he wanted to get up and watch TV to distract himself. Once he got into his chair he did seem a little better.
The supervisor for the support workers came by today and we talked about having the first shift come in at 8am rather than 7am. She is going to see what she can work out.
In the early afternoon the Rev Ed Hird came to visit. He was our pastor at St Simons in North Vancouver which was the church John served as honourary assistant until he got too ill. Ed gave us communion and showed us pictures of the Carol Service on his I-Phone.
Shortly after he left, Margie arrived for us to bake Christmas goodies. John seemed to pretty good when she was here. He was looking forward to Handel's Messiah that would come on at 9pm. Unfortuhalf nately he had a bad spell just as it began. He was so rigid he could not sit upright in his chair. So I moved him to the sofa where he could lay down. He was in misery and his muscles were going into spasm all down his left leg - which is a new thing. I gave him his meds at 9:30 as usual and by 10pm, when the support worker arrived, he was much better.
The biggest thing today was that the neurologist actually called me!! He has cut down on one of John's pills and may make some other changes after the holidays. He seemed quite concerned to hear how much John has failed in the past few weeks. He also asked me to keep a written record of the times the meds do not seem to be working. So I started that tonight.
John did enjoy the last half of the Messiah and listened to it in bed until it was over.
But I have to give today a one thumbs down.

Tuesday, December 21, 2010

Today had it's challenges but overall went very well. John barely opened an eye for the early morning shift but was wide-eyed and awake at 11am. When the buzzer rang I thought it was our support worker, but turned out to be the man from Shaw Cable with the memory expander I got John for Christmas for his PVR.
John was very surprised and pleased. However, the support worker arrived minutes later and spent most of her time with us just standing around as John and the technition worked on getting the system operating just right. As soon as they had left, the nurse arrived. She will be coming once a week to change the dressing on his feeding tube and just generally keep an eye on his health. She was very nice and helpful.
Tonight was the Gateway Christmas dinner and party. Although we had been invited, I had told them not to count on us coming. However, John was feeling quite well in the afternoon so we decided to attempt it.
I was able to get him into his wheelchair with the lift and then take him with the wheelchair down to the front door. Margie met us there and helped get him into the car. The wheelchair just fit into her trunk - although we both have the same make of car, hers is younger and has a bigger trunk. So that means the wheel chair is not going to fit into my trunk.
Anyway, we had a wonderful dinner - John ejoyed his dish of ice cream. Then we went into the lounge where the entertainment for the evening was to be held. The staff sang a great song taken from the 12 days of Christmas .. "On the first day of Gateway the Director said to me....etc. Each staff member said something different on various days - and the 5 golden rings, was Speak English Please... (*because it is our international students who are learning English who are there at the moment)
Then we had the Christmas gift game which we play every year. Everyone bringing a $5.00 gift and then taking turns chosing a wrapped gift or one of the gifts that somebody else has already chosen and unwrapped. Gets quite competative at times - I lost my chocolates but got some nice gift wrapping paper with matching bows.
Chocolates and an alarm clock were the gifts most often traded around this time .
Amazingly, John was good throughout the whole thing and we even stayed for desser and coffee afterwards. I was surprised as I did not think we would be able to stay for the whole time.  Then Margie and Junior (a former Gateway student from Brazil who is up here visiting) brought us home and helped get John in and out of the car etc.
John was still good at bedtime. This is the best day and night he has had in a very long time.
We will certainly give it a two thumbs up today.

Monday, December 20, 2010

I just realized - not only is it only 5 days until Christmas, and 11 days until New Years - but a few days after that I will be another year older! UGH!
John had a poor start this morning. Did not feel very well until the afternoon but did well for most of the rest of the day. He started to go downhill about 9:30 pm again but not nearly as bad as last night.
Tomorrow we have the Support Workers' supervisor coming to talk to us - and the home care nurse coming to see John for the first time. She will be doing the dressing for his feeding tube and any other medical things that need doing as the home care workers cannot do that. They cannot even put a cream on him if it is a prescription.
John's Christmas present is also arriving although he does not know it yet. He has completely filled up the PVR with recordings so I got him an extender box so he can record more "stuff". Shaw is going to install it tomorrow.
My back is feeling much better today - thanks for the prayers.

not sure how to rate today

Sunday, December 19, 2010

Well the day began well but did not end well. John had a good day for the most of the day. A support worker came for 2 hours this morning rather than the usual one, so I was able to go to church. However, although she was here from 10:30 to 12:30 it really means to only 12:20 as they get travel time - so while I could be at church I could not stay for the coffee hour but had to leave as soon as the service ended. However I enjoyed being able to attend church again.
John did well until about 9:30 when the meds did not seem to kick in. By the time the support worker arrived at 10:00pm he was in some distress and it only got worse once he was in bed.
John has two sleeping pills prescibed for each night but I usually only give him one at bedtime and then the other one only if he wakes up in the night and can't sleep. Tonight he was so stressed that I gave him the second pill only half an hour after the first one. Then I sat with him and held his arms until he went to sleep.
So one thumbs up for the day and one thumbs down for the night.

Saturday, December 18, 2010

One week until Christmas ....hmmmmm
Last night continued to be a challenge. At 2am John needed me to fix his bed up. At 3am I heard a thump - and on checking found him on the floor. He had tried to get up by himself. With my back in the shape it is in right now I knew I did not dare try to pick him up myself. He tried to get up but could not - so I called 911 and a very nice paramedic came and just picked him up like he was a baby and lay him down in bed.
I am thankful he did not hurt himself except for a few little bruises and a cut on a knuckle. He is under strick orders to not try that again. It is so hard for him to realize he really cannot be independent any longer.
In spite of all that, today was a good day for him. He had a hard time waking up for the 7am care but was really good at 11am and I only had to boost him up into his chair once in the entire day. Margie and I were able to slip out for 90 minutes and get some shopping done.
He was just starting to not feel as good when the worker for the 10pm shift arrived.  Once she got him into bed he seemed to settle down again.
I am so thankful he did not break any bones in his fall, and that he had a good day today. Thank uou for your prayers.

 A definite one thumbs up day,. Hallelujah

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.

Friday, December 10, 2010

Well - what  can I say. It has been an interesting 48 hours. Yesterday the first support worker came at 7am and bathed John and got him up on the couch. Went very well. But by the time the 11am worker came he was in bad shape and we just ended up putting him back into bed. Then I had to get him up again etc. later on by myself, so we did not accomplish our goal to take the strain off of my back. At 10pm the worker put him to bed and that went quite well too. BUT he woke up at 2am and decided he was going to get up and work on his computer. Only he fell. So them I had to get him up off the floor and back into bed. So much for saving my back.
Today was worse - much worse.
It started out OK again with the 7am worker. By the way we have a different woman every time they come - they say they will be back next week same time - so that means 21 workers in a week to try and show them what to do.
However at about 10am John had a really bad attack. So when the worker arrived at 11am there was absolutely nothing she could do for him. I was sitting on the couch holding his arms and she sat and talked to us. Then the Physio therapist arrived. She was quite upset with the condition John was in and got very concerned. Seeing him at his worst is scary. So she called the Occupational therapist and told her to come over right away that this was an emergency. Just then the supervisor for the support workers arrived with a ream of paper work she wanted filled out and signed. But I couldn't really talk to the therapist or go over the papers with the supervisor because John needed me full time.
They finally decided to put him to bed. But by that time the support workers hour was over so she left. We got him into bed but he was in really rough shape and they all had opinions as to what was wrong and why he was like that and told me I should let the doctor know - they did not understand what was going on or how often I have talked to the doctors. They thought the support workes should come at a different time so he would be better. They did not seem to understand that there is no schedule for when the meds are not going to work.
Well, the supervisor finally left and the occupational therapist arrived. I was still busy trying to settle John down and get him comfortable. She came in and the PT and OT put their heads together and started deciding what needed to be done - plywood put down over the bedroom carpet, the dressers moved out, the door taken off, a lift installed, a comode, and the rug in the living room removed. So much for our lovely home.
They said I needed to have the wood floor installed before Monday and the lift would be here Tuesday morning. We also have to get a wheel chair. Right now we will rent them but it will still be quite an outlay.
I felt totally overwhelmed and discouraged by the time they left. However, I am doing better now.
After they had all left the meds finally kicked in and he felt better so I moved him back out to the living room. The problem being that I am still doing most of the lifting and moving!!!
At about 9pm he had another bad attack so I had to move him from his chair to the sofa. When he is that bad he is dead weight and cannot help himself. When the worker arrived at 10pm he was still pretty bad and did not want to be put to bed at first because he was having difficulty breathing. But after a few minutes it let up a little bit and he let her put him to bed. She was a little bitty girl so had some difficulty moving him.
I have hesitated to get in support help for just the problems encountered yesterday and today - we end up paying for a lot of help and then I do the work anyway because you have to wait until John is feeling well enough. Well, it is too soon to say, I told you so, but I am not encouraged.
Maybe tomorrow I will feel different.

A big two thumbs down for today.

CHRISTMAS LETTER 2010

Christmas 2010

I am sitting at my desk looking out at many twinkling Christmas lights. It is a beautiful scene. Christmas is my favorite time of year. I love  joining in the celebration of the biggest birthday party in theworld!

And I am so thankful for God’s love and this reminder of His gift of love in the birth of Jesus.

It is over a year now since we moved out of Gateway and into our condo at Parkway Estates. We have enjoyed our new lifestyle very much. We are very blessed to have such a comfortable home and wonderful neighbours.

As many of you already know, John’s health has deteriorated considerably over the last year. Actually, looking at what he was able to do when we moved in here, compared to now, was a real eye-opener. I have detailed all of that on the blog that I write to update our friends on his condition. For those that do not already know, you can check up on John at http://bjlombard.blogspot.com



In March of this year, we celebrated John’s 72nd birthday with an open house in the activity room of the condo. Over 80 people came to celebrate with him. He had a good day that day and was very blessed by all the love and caring. Our bishop, The Rt Rev Silas Ng gave him a wall hanging of Psalm 121.

NamJun, TaeYeon, OnSol and Haram Cho

We have also appreciated visits from a number of Gateway graduates this year as they  passed through the area. It helps us to still feel connected to their lives and ministries around the world.

The other seniors who live in our condo have been a real blessing to us too. One man comes in every week and stays with John while I go out and do the shopping. Another one comes and sings hymns with him. Several others have volunteered to help out when I need it.

John and Nahal

This fall, John went to speech therapy at Surrey hospital for 12 weeks. Nahal was our therapist and she and John had a wonderful time together. The therapy helped him a lot although he has not been feeling well enough to be consistent in doing his voice exercises in the last month or so. One of the blessings we have is that John has not lost his sense of humour even if he cannot always express it. One week when we said John needed a haircut, Nahal suggested that he should grow it long instead. Next week he arrived wearing a long blonde wig. What a handsome husband I have??????

It has become obvious that I cannot handle the physical care for John (moving,dressing etc) by myself any longer. The disc problem in my back is objecting to the load of lifting him etc. So we now have Home Care coming in three times a day to help with those duties. It is a blessing to both of us. But it means I have to be up at 6:30 am every morning – ugh!! And by the time we have him bed bathed, dressed and bedded down on sofa, I am wide awake and cannot get back to sleep. They come to put him to bed at 10pm and I cannot go to bed until he has had his 11pm meds so I have to “sleep fast”. The Occupational and Physio therapists will be coming to tell us what other equipment we need ie lift for bed, wheelchair etc. The family is increasing and all are doing well. John Jr and Charlene moved from Beijing to Dongguan this past year. He is currently in negotiations for his own TV show on how to do  business in China. Ted and Sabryna welcomed their new daughter, Shyla, on November 27th. Our 7th grandchild. Tanya’s family is growing quickly and flourishing.

John, Charlene and their family

Tanya and kids



Ted and Shyla

Greg

One of our family does live in the area and that is our foster son, Greg. He plans to move back to Langley in the near future and hopefully will be able to spend Christmas with us.

Due to John Sr's health, we cannot travel to be with any of our other kids this Christmas, and due to various circumstances they cannot be with us either. But we have some dear friends coming to enjoy dinner with us and we are looking forward to that. We can still enjoy the birthday party!!

Although this has been a difficult year in some ways, we are thankful for our many, many blessings.

We have been aware of God’s provision for us over and over again. So it is with thank-filled hearts that we look forward to whatever 2011 may hold for us.

O come all ye faithful, joyful and triumphant.

O come ye o come ye to Bethlehem.

Come and behold Him, born the King of Angels,

O come let us adore Him, O come let us adore Him

O come let us adore Him Christ the Lord

Christmas Blessings

John and Bev

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Wednesday, December 8, 2010

John woke up at 2am and wanted ice cream!! He enjoyed every bite and then went back to sleep.  Just as well he enjoyed it then because when he woke up in the morning he felt awful so could not eat any then. He had a very bad morning and early afternoon but then started to feel well enough to get up and sit in his chair.
The lady from Home Care came today and starting tomorrow there will be somebody coming in at 7am to get him out to the sofa, 11am to bath and dress him and get him into his chair, and 10pm to put him to bed.
Hopefully this will be a big help for me.An OT and a PT will be coming in sometime in the next couple of weeks to evaluate him and see what else we need. Looks like we may have to get a lift to get him in and out of bed, and a wheel chair to transport him from one room to the other. Not sure what else they may recommend. The home care worker was looking at his recliner chair and wondering if he needed a different kind of chair as he keeps sliding out of this one. But all of it will be less expensive than having to put him into a nursing home, and much better for John.
Ike and Trudy Agawin, the Directors of Gateway, came over tonight for a visit and brought us a beautiful big poinsettia. We had a lovely visit and John was able to sit and talk (well, whisper) to them.
7am will come early so I am off to bed.

One thumbs down for today.

Tuesday, December 7, 2010

John had a better day today - not great, but better. However, the issue of his mobility continues to be a big concern. He keeps "sliding" out of his recliner chair and I have to get him sitting up again. He cannot stand up alone even hanging on to the his walker. So I have to try and hold him up and get the chair back into position, and get him sat down again in a better position. This happens every 15 - 30 minutes when he is not doing well. Once again after 6pm things got worse and he headed for bed early again and then I gave him his meds at 11pm.
Gus, our neighbour, came in to stay with John so I could go and help Margie in the office at Gateway this afternoon. Unfortunately, John had some personal needs come up that he could not ask Gus to help him with, and so he called and asked me to come home shortly after I got there.
Still have to give it a one thumbs down today.

Monday, December 6, 2010

John did well last night until 4am. Then things got a little rough as he could not get comfortable. Another dose of meds and sleeping pill looked after him until the morning.
Today was not too bad.Pastor Ed Hird called and John was able to talk to him on the phone for awhile.

 It was the Christmas dinner at the condo tonight and I was very encouraged when John said he felt well enough to attend. His strength has weakened considerably in the last few weeks so he could not walk that far with his walker, but I pushed him and we made it OK. By the time grace was said, he had to come back home as he was beginning to feel quite miserable. Gus helped me get him home and settled and then we went back and had a beautiful Christmas supper. I brought up some nice chiffon style dessert for John to have when I got home (which is all he would have been able to eat if he had stayed) but he missed the fellowship. I only stayed for the supper but not the Christmas entertainment that followed.
John is experiencing more pain these days - namely in his feet, now his hands, and his knees..
It may be neuropaphy from the diabetes but that is only a guess not a diagnosis.
It is the Christmas carol night at Gateway tomorrow night but I do not see us being able to go because John's evenings are not good at this time. I am going over to Gateway to work in the office and help Margie tomorrow afternoon and Gus will come and stay with John so I can do that.

I also talked to the Home Care worker and the neurologist's nurse today. We will have to see if either can offer any solutions for us at this time.

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

Sunday, December 5, 2010

John had a really good night last night and slept through the entire night. He also had a pretty good day until 6pm. Then the meds stopped working well and he had a miserable evening. He went to bed at 9pm but he is still awake as I am writing this. I am praying he will go to sleep soon and that we will not have another night like Friday night.
I will give it a one thumbs up for the day and a one thumbs down fro tonight.

Saturday, December 4, 2010

The last few days have been very difficult. John has had a terrible time with the meds working minimally or seemingly not at all. Yesterday was bad. Last night was horrible.
Usually, when John is very uncomfortable, going to sleep will bring him some relief. Last night he never went to sleep. I gave him sleeping meds at bedtime and more an hour later. But the first time he drifted off to sleep was at 6am this morning. In the meantime he was suffering all through the night - the really bad spells seemed to come in waves - really bad and then let up a bit and then start again. So every time he would almost get to sleep another session would start.
On top of that, the valve for his feeding tube had cracked. Fortunately, yesterday I went and got a replacement. But in the meantime I had replaced it with an older one that was wearing out. So at about 3am when I gave him more meds hoping to stop the cycle, the valve did not close properly and soon I found all this gunk all over John and the chesterfield when he was laying, backing up from his stomach. I had to get him up and change everything. I changed the valve too.
But this valve was different and I did not turn it off properly, so pretty soon we found there was another, bigger mess, all over the chesterfield, the floor etc. Poor John had to get up again while I cleaned him up and that mess as well. I just got him settled, and discovered that in the struggle, the valve (which had been turned the right way, had somehow got turned on again.) And we had a third mess. I was running out of sheets and towels to cover the chesterfield with!! I had three full loads of wash waiting for me in the morning.
At  6am I gave him another sleeping pill and this put him to sleep until about 9am. He has been up (well, awake) ever since then.
When he woke in the morning he was as bad as ever. He tried getting up but soon went back to bed and stayed there all of the morning and early afternoon. He had me read to him to try and distract him.
Finally, another dose of extra meds seemed to boost him over the top and he was able to get up and watch TV. Soon after that we had lots of  company arrive. Debbie dropped in from Tsawwassen and Margie, Kim, Paul and Manuel came over from Gateway. So we had a lovely tea party and lots of stories and laughs. John felt well enough to enjoy most of that although a couple of times he had to be moved to get comfortable. Having two strong men here to help get him up and sit him down again was a big help.
But after 6pm he began to feel badly again. By bedtime he was not well at all. After I got him into bed he said he felt terrible and asked me to just sit with him and hold his arms. But he was sound asleep in about 5 minutes.
 I will call the neurologist again on Monday and see what else, if anything, he can suggest.
I do not think I will be able to get to church tomorrow as his condition right now does not allow for leaving him on his own at any time.
Transferring him from one place to another is getting to be a big problem as he has no strength to help himself, stand on his own, etc. and I am hoping the physiotherapist will be coming soon to help me with that.
Please pray for sleep for both of us.
Two thumbs down, at least.