After thinking about it many times, I finally made it back to the nursing home where dad died. I had intended to take Oreo over for a visit but ended up going alone to deliver some things to the staff.

It felt weird walking across the lawn to the front door, seeing all the residents lined up int heir wheelchairs enjoying the day. I saw two ladies who had become favourites of mine and went over to greet them. They both exclaimed that they had not seen me for such a long time - neither knew that dad had died and were most sorry that they asked. I had a nice visit with them and told them I would return. I went into the lobby to drop the articles off; saw a few more people I knew but did not linger or go upstairs. I don't think I can yet face the fifth floor and the room in which dad died.

I just returned from the World Alzheimer Congress 2000 in Washington, DC. It was an intense five days of learning and networking. I brought home one foot of information (!) which over time I will organize, digest and put up on How to Care (www.howtocare.com) in the new dementia and end-of-life sections. I attended sessions on end-of-life, difficult behaviors, ethics and AD, caregiving and creative spirituality, management of family adjustment to long term care and a daughter's role as caregiver among others. I met some people who had caregiving web sites who I had met on-line as well as other Canadians who were very interested in my work.

The congress was quite amazing from a Canadian perspective. The Americans have really rallied around Alzheimer Disease. We heard Maureen Regan and Rita Heyworth's daughter both talk about their experiences with AD and their support for the cause. Research is plentiful, competitive and on-going. We heard from researchers from around the world; the hope is a prevention and/or cure within 10 years. We also heard from professionals working in third world/developing countries - India, Romania, China etc. and what they face in trying to educate their populations about dementia and provide community care, in areas where people just want to survive and are not interested in knowing about a disease they live with but do not at all understand. Their battles make ours seem like a walk in the park.

The days filled with the knowledge and suffering of those afflicted with AD/dementia was at times hard for me to take, given dad's recent death. I was doing OK until the Sunday night gala. After hearing Maureen Regan and host David Hyde Pierce (Niles on the TV sitcom Frazier whose grandfather died of AD), Benny King came on stage where he played his well-known blues music. When I hear music like this, especially live music, I am usually the first onto the dance floor. Not tonight however. I was feeling lethargic...and then slowly the tears started to build and I finally had to leave as he started to play "Stand By Me", the AD theme song.

I guess these unexpected emotional reactions will continue to occur as I struggle to comprehend my father's death and all the pain, suffering and guilt that led to it. I don't think I will ever figure out why a human being had to suffer as he did. I guess I must be thankful that I have found my calling in life and in so doing was able to help dad deal with the multitude of problems he had.

July 31/00

Went to dad's nursing home today - quite unexpectedly. I went to see Mimi, a companion I had met at Lincoln Plce who helped me out with dad from time to time and who really supported me the last few days of his life. She is in a rehab hospital recovering from a terrible break to her ankle. She asked if we could go in my car to Lincoln Place so she could visit with her client and also see her friends on staff. I said of course and off we went.

The visit worked out well. For the first time since dad's death I went back to floor 5 to see the staff. It happened to be around shift change so I saw Merci, the day nurse, Asha the night nurse, Michael the PT and a few others. It was good to see and chat with them. The door to dad's room was closed, a good thing I think. Mimi and I sat out front for a while and chatted with some of the residents we knew who offered condolences to me.

I found the assistant director of nursing to see if she had received the Janssen Pharma dementia information kit I left a number of weeks ago. I felt it would be a great training tool for staff to help them deal with cognitively impaired residents. She had just received it and thought it looked excellent.

I know that some caregivers go back to the nursing home after their loved one has died because they enjoy it and find going back and helping to be therapeutic. I will not go back unless I have a reason; the place has too many memories of difficult times. My work keeps me in touch with caregivers and caregiving and for a while this will be enough!