June 3/97
I received a message last night from the rec therapist Nancy that dad could not go shopping tomorrow because he had developed sores on his buttocks. This was news to me..I immediately called the home, but the night staff is next to hopeless. They told me dad was fine, pushing around in his wheelchair (ie. making trouble) So I didn't know what to think. Next morning I called first thing; sure enough, he needed to be out of the wheelchair to ease the pressure and help the healing of these sores. I was upset because I knew one of the reasons for this..he wasn't being changed enough, complaints I had made before. So I made a trip over to see dad and help them keep him lying down.

This incident happened to coincide with my facility evaluation which I had sent in a month earlier and they were ready to review with me. On the way up the stairs to dad's room, I met the head nurse who said she wanted to review the evaluation with me. I said great, cuz I wanted to see her too. I arrived to find dad in his wheelchair with his fingers caught in the handle of his radio which he was trying to do something with.

I told him I was going to help him lie down and get some rest for his poor bottom...he fights everyone but me, so I got him down. His sores are superficial, but to clear them up he must be out of the chair. I was going to shave him but he fell promptly asleep. Then the head nurse came up for our pow-wow. She reviewed my comments about diet, noise and the medical care...very well I might add. Then we reviewed the present problem; I said very bluntly that he was not getting enough care and being changed enough. She agreed. I also said I could never find any help on the weekends; she said they had changed the break schedules to have more people on the floor. I also said I didn't like the fact that when I asked a staff member for help, the response I often got was;"He isn't mine; go find -----". Anna agree this wasn't right; anyone on the floor should be able to help.

I checked dad again and he was still asleep, so I left, had to go to a meeting. My heart cried for him; along with everything else he has to endure, he must suffer the indignity of such sores. Again the dementia seems to come to the rescue; he doesn't seem to realize the situation. But I do and it hurts. One positive thing; he said he had a great time at the baseball game.

June 4/97
Dad's wheelchair is causing great confusion. My calls to the supply company who were going to enlarge and upgrade it went unanswered before and after my holiday. Then yesterday the home physio told me they said they couldn't do any more...what had they done I asked myself? She suggested we trade chairs for what he needed. I said fine, let's just do it and get it done. Not 10 minutes later I got a call from the phantom supply company; the parts were in and they were going to pick dad's chair up on Thursday. Now I was really confused and asked her to work it out with the physio...I decided to delegate! No answer yet. Unbelievable...something so straightforward gets so screwed up.

I don't know how many of you are gardeners...gardening is good for caregivers! In any event, I am a 'play gardener'; I have a balcony, not a real back garden. Every year I do the 'Impatiens' thing..this year when I went to Debbie's in London last weekend I ended up with all these weird plants and bags of dirt and peat moss the size of a small house. Now with Caregiver Network, my dad, Caregivers' Week and my teaching I have to find time to give these poor little plants a reasonable home so they don't die before I even get them planted. I don't know how I get into these pickles, but it's never boring! So I came home tonight after a meeting and started planting at 6:00; before I knew it, it was 8:45 and I had work to do. But at least the little guys have a home and I sit here with black finger nails, hoping my soil mixing etc. will work. Stay tuned.

June 4/97
Went over today to try and keep dad in bed for a while. I arrived to find dad on his bed and not very happy, I explained again why he had to give some relief to his bottom. So he accepted my logic and relaxed; started asking questions about the family business affairs which he does every few months. I tell him what he wants to know...then he askd me why he never knew any of this before...then I remind him that I do tell him what he wants to know whenever he asks...you get the picture. He then told me I could leave; I was astounded...he has never let me go like this, so he must have been very tired.

June 5/97
Walked over again to take dad out for a short walk, then to get him to lie down; I finally saw the sore on his buttock and it look really raw and painful to me. The nurse assured me it was much better; I shudder to think what it must have been like before. Dad says it doesn't bother him. I heard that they are now using laser to treat bad bed/ other sores which refuse to heal. Apparently a man down the hall had a bed sore that was going gangrenous and it really cleared the sore up. Will investigate this more fully. Again dad fell asleep and I left.

June 8/97
Took dad for a walk; we had a frozen yogourt which he said he really enjoyed. All of a sudden he said he had to have a s...., so I pushed as fast as I could back to the home so he could go to the bathroom. Laid him down and he promtly fell asleep. I started to go through all his drawers and clothing; removed the socks which could no longer fit over his swollen feet and ankles, undershirts with holes; I will take all his sweat pants with elastic at the ankles to the tailor to have the elastic removed so they don't constrict his circulation. He woke up once, saw me and went back to sleep. I finally left..the longer he stays off his bottom the better. I am finding it very difficult to push him in his wheelchair these days. I don't know if it's because he's gotten heavier or I've gotten weaker, but it is real work. Still no resolution on the wheelchair, but looks like we are going to another equipment company who is willing to make a direct change for a chair that is dad's size. Halleluliah!!!