June 15-30/98
I have started visiting dad for shorter periods of time...1-1.5 hours because unless we have something concrete to do it's really difficult, certainly for me. He can't talk any more, he nods his head yes or no in response to questions (sometimes); no reading, TV...

I am convinced he has had some small strokes in the past 6 weeks; he has regressed since his birthday party at the beginning of May. He rarely answers a question now. He always used to let me know if he was cool or hungry or had to pee, but not now. I can ask several times in several different ways and I most often get no response. He seems to be staring out into space. Can he measure time? Does it matter? When my mother was dying, she would ask me what time it was. Why? What did it mean..that time was running too slowly before her misery was ended? I didn't know how to comfort her.

I helped put him to bed the other night; it has been a while and God, how difficult to watch him being manoeuvered in a hoist, changed etc etc. My presence made it easier to remove his dentures and keep him calm while they cleaned him after a bowel movement. He was tired and was asleep before they had finished. I sat with him a while just watching, thinking, wondering what goes on in his mind when he is put to bed the way he is.

On Father's Day I took over a lovely bright yellow Mum plant and cards from my brother Doug and me. My Toronto sister did not visit and there were no cards from my other two sisters. Unbelievable. Dad took a while to 'see' me but I wonder if he ever really understood it was his daughter Karen. I unwrapped the plant, explaining slowly what it was. I then read Doug's card, which was a lovely panorama of mountains and lakes, then mine. But I might as well have been talking to a wall; nothing seemed to get through. I talked about years gone by; how he had celebrated 57 Father's Days...but nothing worked. I finally left in despair.

I met up with dad and Miajan in the village the other day; dad recognized me immediately which was unusual. Normally it takes his searching my face for a while. One night last week I visited; for the first time ever in my life he touched my face and smiled, as if trying to imprint it in his memory. I asked him if he liked my face; he nodded yes. I told him my face was part of his face and hoped he liked it. I started to cry...I feel so helpless to bring meaning to his life or to bring joy...I keep asking myself why one must end up unable to walk, speak, see or hear well, let alone understand...it's wrong.

In spite of his increasing vascular dementia and probable AD, he can still be alert. Whenever I tell him I love him and I know he loves me, that he is my dad and I am his girl, a huge smile comes over his face, really the only time I can get him to smile. It is a special time when I really feel I connect with him now, on a very basic human level. He's not in pain except when moved improperly so I pray he goes to sleep one night and doesn't wake up when his time comes. My nightmare is another stroke after which he is in hospital for months, left uncomprehending and helpless.

I am at the cottage now as I write; dad helped me buy it and came up several times at the beginning of this adventure. It was dad who saw the pink bathtub in the ditch along the hydro line that now graces my bathroom (the best on the island in my mind). He came with me one Friday night to Mississauga when I bought a bed, had them tie it to the roof of my car and then assembled it with his help at the cottage. I remember when he insisted on getting an armful of firewood and then falling over backwards from the deck onto his back. I was terrified, but he was OK. I remember listening for him in the night, terrified he would fall while trying to get out of bed and I would be unable to help alone. He loved the view from the deck and I feel sad that he cannot be here to enjoy this at the very end of his life.

I am crying as I write, a long time in coming, as every time I visit my heart breaks, seeing him in his wheelchair parked in the door of his room, so concerned about the towel on his tray table. Moving it, folding it, moving it again. Every person'e experience with dementia is so individual. It is a disease which forces caregivers to feel isolated in their unique experience. Who can I talk to who knows this disease and me, my dad, my mom, my family? No-one now, since our family doctor has moved out west. He did help me to a point but I'm pretty sure he never liked my father because of the way he treated my mother and consequently me, so... Are we to come to this? Am I to come to this?

No matter how many conferences I attend on aging or dementia and how much I learn, the sorrow I feel can never really be mitigated. This disease is so unnatural and cruel. Sometimes I feel I am the worst possible caregiver because I feel things too deeply, I see others suffering and cannot forget it. But I guess this inability to accept has driven me to start Caregiver, to at least try and help myself and others make sense out of chaos and pain.

I know my father has been far from perfect; he was very hard on my mother and on his children; he demnded the best. But somebody has to love him and that somebody I guess is me.

I don't believe he ever intended to hurt anyone, he had high standards and wanted his family to succeed. I am grateful I can now be somewhat objective about him. Even though I will never have children of my own I can understand what he wanted for us. The problem is he too often forgot about the 'us' in the equation.

I continue to talk to him about Caregiver, whether he hears or not. I tell him about the trips I take, the articles written..and it's all because of him. I tell him again and again; maybe something sinks in for an instant. I always hope so but I doubt it.

Earlier I said I didn't know how to comfort my mother in her final days; I wonder if I am doing any better with my father even though I have more time and more understanding; it seems to me that being able to comfort and assure is the essence of helping loved ones leave this life. If you have the chance to do this, you are blessed. I couldn't comfort my mother because I was so devastated and unprepared that she was leaving me so quickly. Combine this with the fact that she wouldn't let me into her thoughts or fears and you have ongoing sorrow and regret. I miss her every day of my life. It was my mother who somehow instilled in me my interest and respect for older people. She always took my aged aunts out for lunch and encouraged me to help them. Ofteh we would be walking along the street and mum would see a senior walking slowly, struggling. She would murmur..'poor old soul'..I've never forgotten. I try to honour her memory by remembering what she felt but would never openly express.

Every time I write like this, when I cry, it truly is a catharsis. I understand a little more, I accept a little more, I carry on with life more blessed. But how longer must I go on crying and trying to move forward? Forever I guess cuz it's life...