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!!!

June 11/97
The night nurse called to tell me they found dad on the floor of the bathroom in his neighbour's room. He claims he did not hurt himself, and they checked him over. I'll go over tomorrow to check him myself. Also called his companions to remind them to give him lots of fluids in this very hot weather and to put sunscreen on him. I bought him 2 new hats the other day...I washed his and think I shrank them.

June 13/97
Today I waled over with some new hats to replace the ones I shrank. I tried both on dad; he said they felt great. I stood there looking at him, wondering when the last time was that he saw himself in a mirror...I wonder what he would see if he were to do it today. I was going to take him out, but then the rec staff came by and said it was happy hour...entertainment down in the activity room. So I suggested we join everyone and I'm glad I did. The performer was a women with a guitar who played a lot of the favourites from the war, and the fifties and sixties. Dad actually sand along with "Irene Goodnight" and "You Are My Sunshine". Aftward I took him upstairs because I had to leave; I'd only intended to stay for an hour and here it was two hours. I left him by the nursing station, very agitated at me. I asked him if he was angry; he said no. But then the elevator came so I departed. I knew his companion would be there shortly.

June 15/97
Father's Day and today was the day I promised to take dad to church. He also mentioned that he would like to have bacon and eggs, so I decided to give him breakfast at my place. So I called Saturday afternoon to tell them to have dad ready for 10:30 and called again Sunday morning...you can never firm things up too much! I got to the home early fortunately; there he was dressed appropriately but in a wheelchair with no footrests; absolutely essential for going outside. So while they sort of whined and dithered, I said just get his old wheelchair and we'll use it. In the elevator dad started crabbing...where was the rest of the family, church was so far away. I looked at him and said:"Dad, do you want to crab or will we go to church?". He settled down.

The weather was perfect and the short walk lovely. We settled in our seats; only for me to learn that today was the last service for the senior minister who dad has latched onto. I didn't tell him, wonder if he'll figure it out the next time we come. The service was lovely, seemed short. At the conclusion I wheeled dad down the main aisle so he could greet his pal the minister. We then walked the short distance to my place; I asked dad if he knew what day it was. Of course he didn't. I reminded him it was Father's Day and toasted him. He seemed to enjoy his bacon and eggs but seemed to fall asleep at the end. I cut his hair and then decided we should go back so he could have a sleep. We'd been out 3 hours. Well, he was having no part of that. As soon as we got to the street, he would yell at me and do a circle motion with his hand to turn around. Every street we entered he did the same thing. I told him it was time to go back but he wouldn't stop, became more adamant. When we reached the home we sat out front for a while chatting with other residnets but I really had to go and do some work. So I took him upstairs and was taking his jacket off, when my sister and her husband arrived. Good timing, I was gone.

June 24/97
Was away for four days so haven't seen dad for about a week. When I arrived the first thing he said was:"If I had known you were coming I'd have told you not too". When I asked why, he answered that he was afraid that I'd never get out. Not a good sign. He repeated several times that he was afraid for me; I reassured him that I was capable of looking after myself. Too me he looked tired and worse than a week ago. I fed him lunch then took him out for a walk. We stopped for a smoothie, something he had never had before but he seemed to enjoy it.

I was distressed to learn that he was again suffering from pressure sores on his buttocks; when I got him back I asked for help to change him and put him in bed. He was soaked; his buttocks were red but not broken out. He fell asleep instantly when I put him down. He finally has a wheelchair which seems suitable; he has a good cushion but I'm going to investigate a gel or air cushion for better sore prevention. I had to take the new chair down to maintenance to have the tilt things put on the back; hopefully this will be the end of the wheelchair saga. It certainly is easier to push.

June 26/97
It's amazing what the accreditation process can do to an institution. Every three years homes go through this and I honestly could not belive the changes made to this place in six weeks in preparation for today and tomorrow. Apparently nothing had been done for 10 years which was pretty evident. Now we have a new lobby, furniture, curtains, paint jobs on the floors and new nursing stations. The only areas not touched were the residents' rooms...ironic since they could use some work. I mentioned to my friend the receptionist that it all seemed like a dream, the fresh flowers in the lobby etc...I knew I'd wake up and it would be all gone! Rather a caustic view, but it's pretty patheteic that much needed upgrades were finally done when the place was undergoing inspection. That's private enterprise I guess.

Today was an outing to Harbourfront and I told the home I would accompany dad. When I arrived at 12:45 PM there he was ...in the wrong wheelchair! I couldn't believe it...I was furious! No-one on the floor know why; his supposed new wheelchair was in his room, without footrests. WheelTrans was late so I used the time to page the physio; she didn't know why but said she would find out. WHEN WILL THIS END?? All I ask is to have dad in a wheelchair that fits him!!! All week I have been advocating...calling the head nurse about his sores, the supplier about a wheelchair pad, the home about his shoes, his companions about his care ....it goes on and on. A full time job.

Enough of ranting; the day trip was a success. There were 3 wheelchairs and one ambulatory resident; three companions. The weather was perfect and dad seemed to really enjoy the water and the boats. We toured Queen's Quay which is a gorgeous building and had ice cream. While we were doing this, my dad kept calling out my mother's name, very unusual. Then he asked where she was; I told him she wasn't with us. He then asked if she had said goodbye and I told him she had. Then he grabbed me by the arm and told me not to disappear again. For the first time since she died, my father thought I was my mother. I wasn't sure what to do so I tried to be a 'neutral' person. I think perhaps seeing the boats and water...we had always had a cottage and boats growing up...all this reminded him of mom. So he kept an eagle eye on me for the rest of the afternoon and I felt trouble coming when I had to say goodbye.

We arrived back about 6:00 PM and they had dinner waiting for the residents but dad was tired and became quite beligerent. Obviously he wanted out of here and back home; refused to eat more than a few bites of dinner. When I went to wheel him into the elevator to go up to his floor, he pushed against the door and I needed help to get him in. I got him into his room and he was furious; I really couldn't understand him. I got his jacket and hat off and he turned himself around and started off down the hall. I had two choices; I could stay and end up in a battle or leave, since I seemed to be history to him anyway. So I left, weary and troubled.

I felt unsettled later even though I knew he had had a good time; then suddenly I just started crying, something I have not done for quite a while. I felt trapped; how long would things go on like this...the constant battle to go home...me feeling caught in the middle? There is no-one in my life who can or even cares to understand what it's like to watch someone you love in mental anguish. From the time we were young, we were taught to honour our parents, make them happy. I have finally learned I cannot take away what has happened to my father, I cannot change his life. I cannot make him happy; all I can do is let him know I love him and will not abandon him. But it's probably the hardest thing I've had to do, apart from watching my mother die.