Oct. 30/97
Went to see dad after returning from a conference. When I arrived he was asleep in his wheelchair so I went over to the nursing station and learned that he had been up half the night again. I accidentally arrived just after the speech therapist had arrived and I met her t the nursing station. She had watched dad eat and determined that he did indeed have problems with liquids. I told her my concern now was to see if there was anything we could do to improve his speech. She took notes and got some history from me; she is to come back next week to evaluate his speech ability.

I returned to dad's room to find it empty! I was amazed...where could he have gone without my noticing? It turns out he wheeled himself right by us and did not notice me. I found him down at the other end of the hall; it took him a bit to recognize me...he was very confused. I took him back to his room and tried to talk to him but he kept nodding off, so I finally left. He said he didn't understand why he felt so bad; I told him he had been up for hours in the night but he could not comprehend this.

I felt badly that he had waited for my visit but there was no point in trying to fight his fatigue.

Nov. 2/97
I was due to leave for Ottawa today so planned to spend a few hours with dad before going away again. I found him parked in the hall with his family photos and a pair of pants on his wheelchair traytable. He was preparing to go home and asked me to pack the car first. I almost started to cry...he looked so pathetic. I pushed him into his room and told him it was time for a shave and a haircut...anything to change the subject. I accomplished these tasks and asked him if he wanted to go downstairs. Since it was raining I didn't want to take him out.

When we were settled in the lobby area he again got on the subject of going home. I again explained that it wasn't possible...we went round and round...I kept trying to distract him but without much success. He kept starting to cry and I wasn't doing too well in the guilt department. He then announced he had to go to the bathroom so I took him back upstairs where we just made it in time. Lunch was almost ready.

Today was the pancake house outing and I promised dad I would accompany him. There were about 4 wheelchairs and 6 ambulatory. I arrived at 11:00 am; by the time we got everyone boarded and arrived in Markham (!), it was about 1:00 PM. Dad tucked into the pancakes which he has always loved; after he had finished he was ready to leave but others weren't...still eating and finally toiletting. We finally got on the road and returned about 4:00 PM; so much for my 3:00 PM meeting!

Nov. 29/97
Last night for the first time in about a year, dad called me on the phone. I have had numerous hang-ups in the past while...anyway, I asked him if someone had dialed for him. The most I got back was "It's Ralph", so I told him I would see him tomorrow for lunch. A nice day...sunny and not cold. I arrived in time to give him his lunch. Part way through he looked up at me and said: "I have lost everything". To make it easier for him to reply, I tried to be specific in my response. I replied: "What do you think you have lost?" He said: "I don't know" and we continued on with his lunch. I believe that my father realizes he has lost a lot but is beyond the point of being very distressed by it. At least I hope this is the reality.

I bundled him up...hat, scarf and a blanket wrapped around so you could see his face...and off we went. We got a lot of looks but hey, who cares...he was warm and so was I. He enjoyed himself, fell asleep for a while. We ended up at Loblaws where I bought him some cookies and another container in which to keep them. The other disappeared.

The saga of the mittens isn't over; Norman suggested I buy him mittens since he feels the cold so. Great idea; I buy him one pair which have a place for the fingers inside the lovely warm mitts; he hated them. I then went to Canadian Tire and bought a pair of puffy mitts with long wrist cuffs; again he didn't like them. I asked Norman to give them a go and dad accepted them. Today I arrive and no mitts...looked all over but they appear to have disappeared.

Nov. 31/97
This month has been a bit of a write-off for my diary since I have not been able to add to the site, so I'll try and summarize the issues here.

Speech therapy; I tried one more time to see if speech therapy would help dad. The therapist from home care concluded that dad would pretty much stay at the same level; he is able to express his needs etc. but cannot concentrate enough to practice sounds; at times he is just too sleepy.

His rash: he developed a rash on both sides of his lower buttocks. The staff thought it was an allergic reaction to the incontinence pads. I didn't agree; this would have happened months ago. The rash got worse..these rather large red dots...they now feel it's a type of eczema. In any case, they have changed creams and it is clearing up. I have also changed incontinence pads.

His moods: I got a message late last Saturday night saying dad had hit one of the staff...at noon. Why did it take them 9 hours to call? When I asked for a recount of the situation, they said dad was eating and got very agitated; started shaking the table back and forth, so they moved him into his room where he took a swing at one of the aids. No-one was hurt...I guess I can only imagine his rage and frustration at times...

December 97

Dec. 5
Friday is movie night. I had not taken dad to the movies for ages as he did not seem to be able to maintain interest. But when I found out it was a video on France, I decided to give it another try. Well, he really enjoyed the trip through France. At one point he said: I have to go there...maybe this summer. Then he looked at me and said he'd take me to France with him. I smiled at him and he said no, really, I mean it. We had tea then I took him upstairs and left to put away my groceries.

Dec. 7
Today wasn't too cold so I went over to take dad out for a walk. It takes some time and effort to get him bundled up but we had a good walk, over an hour. I kept asking him if he was cold, he said he was fine. But when we got back, he was coughing and said I had kept him out too long. Sometimes you can't win.

I gave him a shave and a haircut, then it was time for dinner, which he ate gustily. But I knew the battle would begin....I would make a move to leave and he would get all uptight. I don't know what it is about Sundays, but they are the worst for this. He told me to take him with me, then to take him home. I told him I couldn't and then he started to get nasty, grabbed my arm. I told him to stop it. He then started babbling and getting more upset. I told the charge nurse he was upset, kissed him good-bye and left. When he gets like this, I believe my presence just makes things worse and it certainly doesn't help me. If I stayed with him 24 hours a day, he would be satisfied, no matter where he lived. But I can't and won't do it and he won't give up trying to make me do it.

Dec. 11
Today was the annual seniors Christmas service at the church. I picked dad up with the taxi at 1:30 so we wouldn't be rushed. The service was nice; dad actually sang some of Silent Night. After we had tea and walked back. There was an ethnic dinner so I took dad down to it in the rec room. It was Canadian night....cold cuts, pickles, salads, apple pie and cheese (!) He seemed to enjoy it but when we got back to his room around 6:00, I told him I had to go to a meeting. And once again he acted up; after spending 5 hours with him, it still wasn't enough! He got madder and madder when I refused to take him with me; he finally looked at me and said: I'm going to wipe you off', meaning I think Œyou're useless, you won't help, go away'...I kissed him good-bye and left.

One of dad's companions has left for Florida for the winter so I had to find another quickly. I located a male Filipino nurse named Angel; interviewed him and checked his reference. Took him over to meet dad; dad seemed agreeable but who knows...if he has a problem understanding Angel, he may just kick him out.

Dec. 13
The family Christmas lunch. Debbie and Larry drove in from London; Jenny and Ian picked up dad in the taxi. As soon as I saw him I sensed a change; he was bent over on his right side and his right hand was swinging aimlessly. Perhaps another small stroke. He was in good humour although tired. He put up with the noise, the cat, the dog and enjoyed his lunch. Larry showed him some pictures of their garden; we included him in the conversation as much as possible, but the others have a real problem understanding him and you can only ask him to repeat something so many times before everyone becomes frustrated. Wasn't much interested in his presents; I think he was just too tired. Jenny and Ian went back with him in the taxi. I sat on the couch after he had left and wondered; how can he keep going on, stroke after stroke...although I fed him most of his lunch, he certainly tried on his own. Once again I admire his persistence.

As usual when I share a meal with dad, I can't eat much. I am more concerned about his eating and the possibility of his choking, so I can't relax and therefore have no appetite. A shame, since we had nice stuff.

Dec. 17
Christmas party at the nursing home...and I walked into a mine field! I hired a new companion for my father to replace Don who has gone away. Angel is very capable but as I feared he was up in arms when I arrived...very agitated and waving Angel away. He almost hit me before he realized who I was. I quietly asked Angel to leave, I would call him in the morning.

I got dad calmed down and moved him into the dining room where the party was. Lovely punch and hors d'oeuvres. Dad was in his element with the food. The nursing home choir sang for everyone. It was very heart-warming to see these seniors in a variety of conditions singing their hearts out. We sat with a number of other caregivers I knew and had a nice, social evening. But I knew trouble lay ahead, and I was right.

When we got up to dad's room about 8:45 PM, I said I had to leave. Dad demanded that I take him home so he could sleep in his own bed. I told him he was sleeping here; he asked who had made that decision and I replied that the doctors had, and then I left. Too tired to fight.

Dec. 18
I saw my family doctor today. He asked how dad was and I explained what had happened the night before. I expressed my guilt about his wanting to go home; I keep asking myself if it would be possible for him to return home and for me to survive the experience, the stress... and my doctor said;" Do you want me to tell you what is best?" I said yes; he said: "If you want to keep your own health so you can continue to visit your father and provide support, do not take him home". I know he is right; the last session before we put dad in the retirement home almost killed me...I wish things were different, that he was an easier personality and that we could both manage if he were at home.

His other companion is resigning as of January 15; he claims the drive is too long and the traffic bad in the evenings. I certainly agree but also think he has had enough of dad; it's happened before and it will happen again.

Called Angel today and asked him not to continue with dad; it isn't worth the aggravation for everyone.