On My Mind - July 1999

July 6/99
A very hot day but walked over for a break anyway to see dad. He was sitting outside with Wahid and was in a crabby mood. Since he cannot talk, we don't know why. I can imagine the humid weather wasn't helping.

We took dad for a walk and chatted with others around us; at one point I was trying to give dad a drink of thickened juice when he got this weird look on his face and grabbed out for my neck, scratching my face with his fingernails. I don't know why he does this; I suspect it's an expression of utter frustration which he has to take out on the person closest to him. When he does this he refuses any help of any kind - wiping his face etc. So I just backed off, sat for a while longer and said goodbye, to return to work.

July 18/99
Today was race day; I signed up to take dad to the horse races for the day. My sister thought I was nuts but here's my reasoning: my mother was a show rider so when my dad met her they were around horses a lot. I thought that perhaps seeing the horses on the track, hearing the announcer etc. would perk him up in some way, maybe bring back some distant memories. Well, not so. The day was very hot; we sat in an enclosed area with little ventilation ; we were unable to hear the races as they were called and the horses went by so fast that dad just could not comprehend.

I gave him some lunch and then he got crabby. I bought him some french fries which he likes but he refused to eat them; he refused to let me even touch him to wipe his nose etc. So I said to him that I would leave him alone for a while, which I did, although I kept a very close eye on him. A few of the seniors actually won some money (not me!); I was glad for them.

On the way home he suddenly started crying...I thought he may have become upset about my leaving him be. As it turns out, he was getting a sore on his lower back which may have been hurting him. I got him calmed down, then the bus broke down on the highway! I had visions of sitting in the terrible heat with a group of uncomprehending seniors but another bus arrived quite promptly.

We got back about 4:30; I had to leave to go home and walk the dog who had been in all day. On the trip home dad had pushed out his bottom denture so I wrapped it up and when we got back I put it in the denture cup.

July 20/99
I got a call today from dad's companion; he could not find dad's upper plate. I explained what I had done on Sunday; apparently when dad had finished his dinner on Sunday night one of the kitchen staff had seen the denture on his bib.

So I went over, we looked everywhere but no teeth. Dad's lower back is also quite raw so they are keeping him in bed for 2-3 hours after lunch so he isn't sitting so much.

July 22/99
I called the nursing home and spoke to the head nurse. I explained what had happened with dad's teeth. I told her that I would have to pay $800.00 for a new upper plate and I expected the home to pay for at least half. I'll wait to see where this goes!

July 27/99
I returned from a business trip last night to learn that the teeth had not shown up in spite of a major search instituted after I had told the home they were going to pay for half. I went over to see dad in the afternoon; he was very 'out of it'; I suspected another mini stroke. I gave him some ice cream but he didn't have a clue who I was. His right hand was badly swollen; I made sure he was on the list to see the doctor tomorrow.

July 28/99
I went out today and bought a special pillow for dad's coxyx as well as some new elbow protectors. There is a V cut in the pillow's foam which prevents any pressure from being placed on the lower back. I then went to see dad and timed my visit for when his doctor would be there. The doctor said the swollen hand was fluid accumulation. He looked at dad's back which is much improved and said my purchase of the pillow was the best thing to prevent a recurrence. He told me that the skin gets damp in the summer and the moisture combined with constant pressure and sliding can create the type of sore dad had. We were lucky the sore was caught early enough.

I try and watch dad's skin carefully. We have been so lucky so far and I don't want to risk any more skin breakdown because once it happens it is a b...to deal with. The doc also looked at dad's eyes which can look so sore and red; he may change the drops we are using but said to definitely continue with the bathing 3X daily using a solution of baby shampoo and water.

I also asked him about dad's general condition, trying to get an idea of the future. Silly me...he said dad could go on like this for years. Because he does not move, there is little chance of another major stroke. He will continue to suffer from the small strokes and will continue to fail; there is really nothing more we can do. We discussed putting him on a stronger anti-coagulant (he is on Aspirin) but said the doctor was reluctant to do this and I agreed.

So all we can do is keep dad as comfortable as possible and wait. The new cushion has changed the way dad sits in his wheelchair so Wahid, bless his heart, went and got some tools; we spent quite a while making adjustments in the footrests and armrests. One would think that a wheelchair of this quality would be relatively easy to adjust but it isn't. Another money making opportunity for an entrepreneur - user friendly wheelchairs.

It is so painful to watch as my father is bathed and dressed. He is so thin and so confused...the look of panic on his face when he is gently rolled is almost unbearable. He strikes out, according to the doctor, because he is confused. He gets agitated (just like a child does) when you change his position, from bed to the wheelchair for example. My presence used to help, used to calm him. But I don't think it will any longer. He is in a place now which even I cannot reach.


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