April 1/98
The new wheelchair arrived today, so I went over to help dad move over to it and see how he reacted. I looked at it..it was lovely..but something was missing. Dad's head often hangs over his chest, particularly if he is tired. So I asked about a tilt chair; I had recently seen one at a conference I attended. We discussed the possibility of the ADP covering this change and the physio got into a bit of a flap. I said I didn't care; I wanted this chair for dad so he see the world a little bit easier.

Apr. 3/98
The second chair arrived today...a tester with the tilt mechanism. Once again I met everyone at the home to see how dad reacted. He said it was comfortable but it was easy to see the chair was too small...the seat was too short as was the back, the footpads were too small and the headrest was in the wrong position. But it enabled us to see how dad would react to being tilted. I pushed him around the floor visiting the other companions; I tried to get him to rest his head on the headrest but he couldn't seem to comprehend the movement. So he would put his head part way back but then move it back forward. I suspect his neck muscles will need physio. We kept the chair for a few days; Miajan reported that dad was fine in, no problem with the tilt. So now we wait for the proper size.

Apr. 4/98
When I arrived, dad was sitting by the elevator snoozing. I asked the staff how he was doing at night. He has been sleeping badly; he gets very aggressive in the night when they offer care and apparently scratched one of the aids who was trying to change him. I found out the doctor had put him on a mild sedative. I told the staff we would watch him to make sure he doesn't spend all day sleeping. I understand that dementia changes the body's rhythms...dad is often awake at night and sleepy during the day so medication won't entirely solve the problem. They also wake him to change him which I don't agree with, so I shall talk to Victor the night nurse and figure out the best way to deal with this. I don't want dad wet and uncomfortable during the night but I want him to get as much natural sleep as possible.

Since dad's companion comes at 2:00 on the weekends, I was there early for lunch which he thoroughly enjoyed. One thing about dad...his appetite has remained strong and he eats anything put in front of him, regardless of texture. He's an eating machine, especially when it comes to his cookies which I keep well stocked.

During lunch I told him about the new Titanic movie that was playing and how everyone was talking about this ship once again. I asked him if he remembered the Titanic; he said yes...we figured he was 5 when it went down. We then talked about the trip he and mon took to Europe on the Andrea Doria and how it sank the next trip. I think he enjoys these forays into the past; I try the best I can to keep up the chatter and keep his attention.

After lunch we found out there was a welcome tea party for some new residents so I took dad down. As usual it was a nice gathering; at each tea Bob from recreation reads from a book of collected stories written by seniors about childhood memories. I thoroughly enjoyed the reading! Miajan arrived shortly thereafter so I left to go home and do some work.

Apr. 9/98
Today was the annual senior's Easter service so we went with a group from the home on Wheeltrans. I arrived at the home around 12:30; dad was ready so I brought him downstairs to wait. He seemed a bit vague and anxious. The service was lovely..the youth choir performed with a lttle one in the front row who couldn't have been more than 4..so cute. It was neat...a service for the very young to the very old. But it wasn't dad's best day; during a hymn he started to cry...I guess the music brought back something. A little later he started to get restless and kept trying to pull himself up the aisle by grabbing the end of the pews. Finally the service was over and we went in for tea. We sat with a gentleman and his son whom we have seen at past services. Dad ate everything in sight and then started to cry again. His agitation increased so we decided to leave the tea about 3:30.

Wheeltrans wasn't due till 4:15 but he was getting very aggressive, shouting and grabbing at people so I decided to push him back. I knew he wanted to 'go home' and he kept trying to turn the wheelchair around by grabbing at the street posts. His companion Miajan met us, luckily. We got dad upstairs; he refused to take his coat off and was swearing at Miajan. Finally he was toiletted and more quiet. I had to leave to go shopping; as I was saying goodbye he told me "You're a silly fool". I asked him why he thought this; he said I would find out. That night I got a migraine...again.

Apr. 16/98
Went to see dad before lunch but he was so sleepy he couldn't keep his eyes open, so I stayed to talk with Miajan for a while and also had the opportunity to take a closer look at the new wheelchair. The best part is the handle the caregiver uses; instead of the usual 2 handles that have always been at the wrong height and angle for any leverage, they have been replaced by a foam padded bar across the back of the wheelchair. Makes pushing a lot easier.

Apr. 19/98
I walked over at 10:30 this morning to spend a few hours with dad before Miajan arrives. I found him fiddling with his shirt; it was undone and obviously something was bothering him. I cut his hair and then we went out...walked over to Loblaws to get him some cookies; the home took his away for Passover which kind of annoyed me. So we toured the food store, did all the aisles, smelled candles...anything to get him engaged. Looked at flowers, shovels...He ate a good lunch but was so sleepy that he barely finished it. I chatted with Miajan for a while after he arrived, then left for the studio and TV show.

Apr. 21/98
After waiting almost a year and a half and continually checking on accommodation options, I got a call from the social worker at the home saying Dad could have a private room on the 5th floor. I had heard about the opening up of a room and had called immediately but dad was third in line, so I wasn't holding my breath. Low and behold...I actually hesitated for about 5 seconds, wondering how he'd handle the move but decided I couldn't stand being squished any longer into a semi and I figured he'd welcome his own view and more room to manoeuvre the wheelchair. So I'll keep tabs on his night time behavior, to see if he gets agitated or disoriented. He moves tomorrow; I can't be there cuz I'm in a conference. New floor, new staff, new doctor...hopefully more attention and less screaming.

Apr. 22/98
I called tonight to see how dad was doing; I spoke with the night charge nurse Aisha and what a pleasure it was. She was very friendly and kind, said dad was sound asleep. I look forward to meeting her. I hung up the phone and was relieved that the move is working. I need a break in my stress level. My body has finally decided it has had enough and I am having all kinds of problems related to stress...headaches, aching joints, stomach problems...you name it, I probably have it. I find myself tensing my stomach muscles all the time which affects my breathing. So I have decided I really need to do something; signed up for a course of Pilates classes and will take up meditation again, if it kills me (!)

Apr. 23/98
Today is a shopping day and I decided to go with dad and his companion, so we could have an outing together. I arrived before lunch and luxuriated in his new space; the view with the trees is lovely. It now takes him about 10 seconds to recognize me...he sort of studies me, then smiles and usually cries. He had refused to have his teeth put in, so I did that and gave him his lunch as the bus was leaving at 1:00 pm.

His companion arrived and we went downstairs only to find a real mix-up with wheeltrans which left too little space for the wheelchairs and the ambulatory. So I ended up taking some companions in my car and met up with the rest at the mall. We had a nice time; bought dad two new caps for the summer and some sun cream. We stopped for coffee and dad was so sleepy, he couldn't stay awake even to eat. He is back in his old wheelchair while we wait for his new one to be finished so we couldn't tip him back. His head was coming so far forward we grabbed a blanket and his jacket and rolled them up so he could rest his arm and head. Looked weird, at least that's what peoples' looks told me..but it worked. I was hoping for more interaction with dad, but I find it hard to get response from him now. When I was choosing his hats for him to try on, I managed to get that he didn't like a few, but that was about all.

Apr. 27/98
Dropped by to see dad just after he had finished his lunch. Once again, he took a fair amount of time focusing on me, then recognized me. I noticed that his right eye no longer looks straight ahead but rather to the left. What more can go wrong??

Last night was the final program in the TV series. I was an expert on "Care for the Caregiver" and I asked dad's companion to ensure he was near a TV. I did wonder whether it would be a good idea for dad to see me on television talking about my caregiving experience with him, but I concluded that it would be more rewarding for him to see his daughter in her work. I asked Miajan how dad reacted; he said dad paid attention throughout and smiled/cried. I figured that would be his reaction.

So I took his hand and told him that he should be proud of what 'we' have accomplished together; that it was because of him that I started Caregiver, and that we have helped a lot of people. Again he smiled and then got teary. I truly hope he understands and that for one brief moment he felt good, needed, a part of life.