May 16/00
I have wanted to write in my diary many times, have thought about it but somehow have not found the time. I am tired, discouraged. Maybe the last few weeks are catching up with me. I need to write about this time in my life so I remember it and so that you who have been following my story will know what has happened. So I will back-track the best I can; my memory is not serving me too well these days.

On April 27 I was in an all day Alzheimer conference. Not really the place I preferred to be but I had registered and paid so there I was. I saw some professional acquaintances who seemed amazed to see me and offered their condolences. I was surprised (not for the first time) at how quickly the news of dad's death had spread. As always I learned at the conference and was glad I attended.

Tomorrow I leave for Ottawa for an end-of-life conference till Sunday morning. I was invited by Health Canada to attend but felt it was something I should not miss. My sister told me I was nuts to go, especially since I had to start moving on the weekend. Yes, I committed to move for May 1...only upstairs 4 floors, but still a major effort.

Ottawa was very good for my soul. I learned more about end-of-life; ironic this event should happen after my father's death. I was doing quite well until the last hour I was there. A panel ended the formal proceedings; a family physician on the panel Dr. Bill Dalziel expressed his concern that so little reference had been made to the many seniors who were dying while suffering from dementia...in a nursing home. At the end of the panel presentation the audience was asked if anyone had anything else to say. I was the last to stand before the microphone. I introduced myself and stated that I hoped I could get through what I had to say. I could not. As soon as I tried to continue the tears started to flow but I said what I needed to say - that I had a father who had just died in a nursing home, suffering from dementia. I said that it was just dad and me, alone with no support and I hoped that palliative care in this country would move to help people like my father and daughters like me who know too little about helping a loved one die with peace and dignity.

I sat down and started to swear at myself for having lost it. Numerous people came up to me to thank me for having been so honest; several women who worked in long term care facilities told me that dad and I being alone would not have happened at their facility. Somehow this did not make me feel better.

I arrived home at about 2:00 PM on Sunday to find my bedroom furniture moved for my by friends. I looked around at my new apartment and as happy as I was to have the extra space (A real office) I knew how much work lay ahead. So i bucked down and started pacing and moving boxes. A couple across the hall from my old apartment asked me over for pizza about 8:00 PM, a welcome break. Then back at it till about midnight. Although I slept in my new home tonight, I left the animals downstairs until I was more settled.

Next day (May 1) my sister Debbie and her husband Larry arrived from London to help me move before the memorial service. We got a huge amount done. I had a meeting with the minister at 1:00 PM at the church to go over the final details about the service...what she would say, where we would sit, basically the order of the service. She asked me how i was doing. Although pretty exhausted, I told her I was doing alright.

My brother arrived from Calgary about 3:00; got him moving as well! I had arranged that we all go out for dinner tonight. I had long thought that my father's death would be the only time we would all be together for a long time; unfortunately Lanci (from California) was not present. But we had a good time; Doug and Debbie went back to the hotel. We agreed to meet at my place the next morning.

More moving before the memorial service but at least I am finally in. I brought the cats up last night; they seem very happy. Oreo was in boarding; I left her there after I returned from Ottawa until I was moved and the service was over. At 12:30 we drove to the church. The flowers I had ordered for the front of the church were stunning; light, beautiful and fragrant. Another beautiful bouquet had joined ours. My friend Judy from Allianz Canada had sent them. Even though we requested donations to the Heart and Stroke Foundation instead of flowers, she had sensed that I would appreciate the flowers. She was right. The guest book was set up at the church entrance. An adjoining room was set up for a reception after.

Finally it was 2:00 PM and we walked into the church to sit in the front pew. There were so many wonderful faces of friends and family; I greeted as many as I could before join the family. We had made sure the service was simple and it was. After the organ music the minister opened with a prayer, then a hymn. She then spoke about dad and his life. And then it was my turn to give the Eulogy. I had tried not to think of this moment, mostly because I wondered if I could get through it without crying. I walked up to the front of the church, looked out at my family and friends, took a deep breath and started speaking. I amazed myself. I spoke the words I had prepared, I read from a letter dad had written me many years ago - and I did not cry. These are the words I spoke. I sat down beside my sister Debbie who held my hand tight.

After one last hymn Abide With Me the service was over. I was in a daze I think. I remember walking down the aisle with my brother who was sobbing. I did my best to comfort him but I believe he was crying about many years of family difficulties, things he would never talk about. The reception was nice; talked to a lot of people, including the few friends of my fathers who were still here. Everything was over about 4:00; back to my place to change clothes, quickly pack and off to london where I was attending a gerontology refresher day at Western University. I picked Oreo up from the boarders and dropped my brother at the airport. Arrived in London about 7 and stayed with Debbie till Thursday morning.

May 5 was dad's birthday; he would have been 92. He almost made it.

On Saturday May 6 I gave a talk to the MS Society at a caregiver education day. Although a bit teary when I told them dad had recently died, again I was able to maintain my composure.

May 28/00
It's now May 28. I have been sick for a week, felled last Sunday by a terrible sinus infection, topped off by the flu. I guess I should not be surprised; my life for so long has been marked by caregiver stress; the past 8 weeks have been a blur of travel, pain and fatique. During the past month since dad died, I still have not really mourned. I have broken down a few times. I have been hit by pangs of hurt when shopping and automatically wondered if dad needed something, only to suddenly remember he is not here to need anything - or me. I started to wonder what was wrong with me. Why am I not hurting more? Why am I able to continue on, seemingly easily - when the most important person in my life is no longer here? This week I had help with the answer.

On May 24 I had registered to hear Doug Manning speak up in North York. You may recall he is the author of a book I have recommended to many caregivers 'When Love gets Tough' about placing a loved one in long term care . I was still feeling quite ill but felt I should go for the afternoon session which I did. And I am so glad. Doug is a baptist minister from Texas who has become a speaker and writer. He was terrific. His talk, entitled Dont' Take My Grief Away From Me' was such an eye opener. He stated his belief that there are really no experts on grief because everyone grieves differently. He talked about the natural process of grief, the layers of grief and what people need in grief.

At the break, I went out for a drink of water. When I came back into the auditorium, he was sitting alone up on the stage. I walked up to the edge and asked for a moment of his time. I introduced myself and explained that my dad had just died and that I wondered why I was not crying more, feeling emptier. I asked if it was because I had cried for so long before he died. Was it possible to do most of one's grieving before a loved one actually died? He thought for a moment and said that he did not think so. Then he described what had happened to him when his father died...an experience similar to mine. At that time he was a minister and after his father died, he kept on being so busy with his work that it took him 8 months to finally wake up one night, relive his father's death and finally begin to mourn the loss. He told me that he believed that he and I was so emotionally spent at the time of death that he had nothing left to grieve with. he looked at me and suggested that the same thing might be happening to me. he asked me to let him know what happens as delayed grief is something no-one has written about. I told him I would.

After the break Doug told us that he had decided to change the direction of the last half of his talk and went on to talk about caregiver loss. I believe - rightly or wrongly - that he did this for me, to help me deal with my loss. I left the auditorium feeling comforted. Doug's Web site is insightbooks.com. I recommend his writing to anyone who is a caregiver.

I will continue to record my thoughts and feelings here even though dad has gone. I feel there is so much I have yet to learn and pass on as a caregiver. There is so much work to do to continue to help caregivers deal with the end-of-life issues they must face. I continue to be grateful for the many supportive cards and email that still arrive - many from people I have never met but who know me and dad though my journal. Thank you.