August 6/97
I'm in a bit of a pickle. About a month ago my dad's older sister Edna (92 years) fell. I don't know the circumstances except that she was hospitalized and wasn't doing too well. I called and asked if dad could visit...just in case this may be the last time. I was told no; it would only upset Edna, make her think she was dying etc. I wasn't pleased with this decision and called my family doctor who used to be dad's doctor. He told me it was very important that dad have closure with his sister, that he have a chance to say goodbye. I called the family back to explain this; but apparently Edna was improving and was going to be moving into a nursing home. So I thought there would be time for a visit after she got settled.

While away at the cottage last weekend, I checked my voice mail to discover to my shock that Aunt Edna had died suddenly and that the funeral was the next day. I couldn't get off the island in time to go myself so I arranged for my sisters to attend. So here I sit with dad who doesn't even know his sister was ill, let alone that she has died.

Lord, what to do. Another lesson; when a senior falls, don't put off anything. Insist on what you think is right as time is generally limited to tie up loose ends.

August 11/97
Today was the long awaited appointment for dad to have an assessment by a well-known Toronto gerontologist. He hasn't had one for too long and I just wanted to know if there was anything else we could be doing for him to improve his quality of life. I arrived at 11:30 AM to wait for WheelTrans; that arrived at 12:15. When we got to the hospital we had time for a quick sandwich before the 1:00 PM appointment. We were first seen by the doctor's resident and a student.

They reviewed his history with me and why we were there. My main concerns were his speech, drooling, agitation, terribly swollen feet and ankles, pressure sores on his buttocks and his meds in general. I also wanted to ask about how to proceed with the news about his sister and some other sensitive issues. They did a mini-mental which clearly indicated dad's complete loss of short term memory. He was able to fold the paper and follow a few other simple instructions but had no space or time orientation. I cannot tell you how painful it was to watch this formerly clever, articulate man unable to remember the day of the week and look to me for help.

They performed a brief physical, examining his lower extremities, buttocks and heart/lungs in particular. These two doctors then left, explaining that the chief would be in. So we waited a good half hour but dad was very patient throughout. I finally went to the nurse to tell her WheelTrans would arrive in about 25 minutes; the doctor appeared shortly thereafter.

He was wonderful as I had been told. Great sense of humour. He reviewed each of my concerns and the conclusion was that dad's meds are appropriate; he should not wear any support stockings since the circulation to his feet was already so poor; we should get him out of the wheelchair whenever possible to ease the pressure sores (easier said than done); we may want to consider a special mattress which I shall look into; he will have a cardiac ultrasound and based on the findings may be put on a very mild diuretic to see if that helps the swollen feet. They will try to arrange a speech assessment for him to see if speech therapy would help. The best way to handle agitation is the human touch and a comforting voice but as many of you know these can be difficult to come by in the middle of the night in a nursing home.

On the way out I asked him how he would handle telling dad about his sister; in his experience seniors handle this type of news far better than we would expect. He believes in telling the truth...as I do, but I shudder at the thought of having to tell dad. It may break him.

We got back about 4:00 PM; I left him with his companion. He looked at me before I left and said I really had to get over more often; I know dad, I know.

August 16/96
It's late; I thought I would be able to sleep but I seem to be having a delayed reaction to yesterday. I decided two nights ago to tell dad about his sister dying; I couldn't live with this knowledge and look at him every day. So I walked over yesterday determined to do it. It was cloudy, rain was imminent. I found him in the hall, eating a banana. I had heard from the staff that the outing yesterday to the island was a great success; dad had had a great time. So we talked about this a little; I then took him down to the garden and told him I wanted to talk to him.

I explained slowly and quietly that his sister had fallen and gone to hospital, but it looked as if she would be fine and that they were going to transfer her to a nursing home. Then suddenly she fell into a come and died. No- one was prepared for her to go to sleep so suddenly. Dad just looked at me and then he started to howl...I hugged him and I started to cry ...for him because he lost a sister, for an old man who has so much to deal with and now this and just for the shitty way things can be sometimes. I kept telling him that it was her time, that she wanted to be with Herb, that she had died peacefully, without pain. I can only imagine how hard it must have been for him, a person with dementia, to grasp what I was saying. I was filled with anger at my family...no- one could be bothered to tell him, to take my dad to the funeral. Even family can be so selfish.

Because he was crying so hard, his teeth kept falling out, so I removed them and told him I would go upstairs and get his tooth glue, so when he tried to say something I might be able to understand. I went in and cried myself out, got the glue; as I walked toward him in the garden he started to cry again but by the time his teeth were back in, he seemed to have forgotten our conversation. He looked sad but he wasn't crying or saying anything. We sat quietly for a few minutes, then I suggested we go to the store to buy him some cookies. We got caught in the rain coming home. His companion was there when we arrived; I explained what had happened in case there were any repercussions. I had also told the chaplain and the floor charge nurse. We sat together watching the rain, then I left.

As usual, I get to do the dirty work. I'll see him again on Sunday.

August 18/97
I arrived around 3:00 pm to take dad out; it was cool and shortly after we started out he said he was cold, so we only walked for a short time. When we returned to the home, two people came up to dad and greeted him enthusiastically. They turned out to be his friends Janet and Murray, whom dad met in a Harvey's about 5 years ago. We have talked on the phone but I had never met them. Of course I was delighted to see them; they were visiting another older lady, so we all gathered together for a visit. These are the times I enjoy most, when dad is surrounded by friends and conversation, more like a normal life. Even though he can't understand everything, he enjoys the commotion, and I keep him aware of what the major topics are. The older lady in the group had an interesting hearing device; she wears headphones and her son speaks into a small mic; the whole apparatus is the size of a cigarette package. I'll look into this for dad; obviously the traditional hearing aid which got lost is not the answer.

August 24/97
When I saw dad yesterday, I told him I would take him to church, since I knew the weather would be fine. It was; I picked dad up at 10:30 and arrived at church at 10:45. I wheeled him to the very front pew and parked him in the aisle beside the pew so he had a good view. As usual he thoroughly enjoyed church; he stares at the minister or often at I don't know what, but he gains something from this time. We had lemonade on the lawn after the service and then went back, so I could give him his lunch. I suggested he have a rest before my sister Jenny came by; he was OK till we got to the bed. He then demanded to go home; I explained again why he had to be where he was; he said we had never talked about it. Finally he just gave up...it's so hard to watch this; half of him knows where he is but the other half cannot understand why. And my logic is caught in the middle.

August 28/97
Since I am going away tomorrow for a few days, I walked over tonight to spend a few hours with dad. We sat out front on the lawn with other residents and had a nice relaxed time. I brought with me an audio amplifier, which I bought at Radio Shack. The user wears headphones which plug into the amplifier, itself the size of a package of cigarettes. I set it all up and adjusted it for dad and then put the headphones on him. All sounds around the user are amplified, so there is a fair amount of ambient noise. Dad claimed he could hear better and he certainly responded more to the conversation around him. We'll see how it goes. He often loses patience with gadgets of this type.