September 4/2000
The past few weeks have been difficult for a number of reasons. In July at the Alzheimer Congress in Washington I was asked to write an article for Alzheimer's Care Quarterly (1.800.638.8437), a wonderful journal I discovered at the congress. Although published in the US it is edited by a Canadian, Carol Bowlby Sifton. I told Carol I would write a paper on the end-of-life from a caregiver's perspective. Since the deadline was fast approaching, I took Oreo and my laptop to my cottage over the Labour Day weekend, determined to write something I knew would be difficult.

And it was. I spent hours thinking about what happened to both dad and I as he lay dying, and in the months previous. I would write for a few hours then take Oreo for a walk and cry my heart out. I pictured dad as he became more and more frail but still able to walk, then confined to a wheelchair. I remembered the countless times I pushed him in his wheelchair around the neighbourhood, commenting on the houses and trees. As I reread my diary On My Mind, I realized how I became accustomed to the changes in both his body and mind and needed my entries to remember when something happened, when he stopped walking, when he stopped talking.

The hardest part of the writing was reading what I had written about dad's death, how unprepared I felt, how frantic I was for information on the dying process, how frightened I was about experiencing death, how lonely I was when dad took his last breath.

But as so often happens to me things work out in mysterious ways. Looking back now I am able to see how dad prepared me for his death, how he led both of us to a place of comfort as we traveled together through the valley of the shadow of death. I am truly thankful I have written this tribute to my father and to all caregivers who remain by the side of those they love.

September 6/2000

The library called to let me know the book about death (How We Die by Dr. Sherwin Nuland) was in for me to pick up. I have read several chapters and it is not as difficult as I thought it would be. I tackled the chapter on Alzheimer's first. It was a seamless combination of the story of a married couple and how they handled the husband's advancing dementia, comments on what caregivers seem to need and a concise history of the discovery of AD. I have also read about death from stroke and heart disease. he talks about murder, suicide, euthanasia, viruses; I have yet to read the chapters on AIDS, cancer and final lessons. Dr. Nuland writes with compassion, sensitivity and wisdom. I highly recommend the book.

September 7/2000

Last week I received a letter asking if I would sit on an Ontario Goverment sub-committee on elder abuse. Of course I said I would; today we spent in an all-day meeting reviewing materials, process and pilot initiatives under way to help combat this terrible scourge.

As I read the many pages of background material once agin my mind was flooded with memories of all the frail souls in the nursing home where dad lived for 3 years. I can still see too clearly these seniors lining the hallways in their wheelchairs. They were not abused but too many of them were alone in the world, abandoned by their families. It always hurt me to see these fragile, dependent adults; it is easy to see how abuse can occur.

I want to make my contribution in the area of long term care. Abuse does occurr here for many reasons - too few staff to meet the needs of heavy care residents, untrained staff who do not understand the residents afflicted with dementia. I witnessed my father handled roughly a few times; these incidents still burn in my brain. It is a terrible tragedy when we entrust those we love to the care of others and that care turns into abuse.

I also care deeply about caregiver abuse, an issue that too often is forgotten by governments who assume that family caregivers can handle any care situation, 24 hours a day, 7 days a week. Informal caregivers need training, more help and need to know where they can call when the burden of care becomes to great. I'll do my best for family caregivers; we are all unsung heroes.

September 18/2000

A few weeks ago I received a call from the nursing home asking me to attend a memorial service for my father (among others) on September 18 at 7:00 PM. I said I would certainly attend and would be bringing Oreo unless anyone objected to her presence.

I arrive a few minutes early and went down to the recreation room where the Memorial was to be hld. I went back in time to the countless hours I spent here with dad - at tea parties, for special dinners or just trying to read to him from a magazine to pass the time. I knew a number of the residents present; Oreo did her usual rounds looking for cookies.

The service remembered ten residents including my father. I did not know any of the other names but then I often knew a face and not a name. There were only three family members present. The service was simple; the chaplain would ask a relative or failing that a resident to come forward to light a candle in remembrance of the individual who died. I did so for dad and tried to say a few words but the tears started so I really just said thank you and sat down. The chaplain read a few pieces about life and death and it was over. Oreo was so good; she lay near the centre of the room very quietly and just watched and listened. I stayed for tea and cookies - Oreo was the hit of the party as she went from senior to senior who all fed her with great delight.

It's hard to describe the feelings I have when I go back to the nursing home. I feel sad, lonely and sorry. I feel guilty not only because I had to place dad there but because so many old people have to live out their lives in a place on the edge of life. We have got to do better for them. Placement is often a reality for those suffering from terribly dementing illnesses but placement should not be a sentence to doom. It should be a welcomed alternative for a weary caregiver who can no longer continue providing sole care not a punishment for 'giving up.' How did our society get like this? Have we become so self-involved that we cast aside the aged in pursuit of youth and self?

September 30/2000

I received a call from a woman I did not know who left a message saying she wanted to talk about the nursing home where dad was. I called her back and got a lengthy diatribe on how badly her mother had been treated there. Although her mother had died a year ago, she was still filled with anger. She has been telling her story to anyone who wiill listen - particulkarly the media. I asked her a number of questions such as; Did you complain to the administrator? No she did not because she was afraid of retribution. Did she belong to the Family Council? No she didn't. I have heard stories like hers before and I know a lot of it is true. Stories of neglect and sloppy care occur in every nursing home I have ever encountered. Her mother was on the floor where dad was for the first 8 months or so and I was not happy with the staff or his care there either. But I guess I became more vocal; I became a member of the Family Council and did complain to the administrator when I was concerned. I was also able to afford extra help for dad and I belive that made all the difference. I am not saying this is right; everyone should get good care regardless of their financial situation. What I am saying is we as a society have to get more involved in long term care and demand changes. We all will be there one day and the picture is not pretty. Many of us boomers have no spouse or children; who will look after us?