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.