October 22/2000
It appears that end-of-life care is in bad shape in both Canada and the US. I recently saw the Bill Moyer's 4-part series on dying "On oOur Own Terms" on PBS - an excellent overview. If you missed it go to http://www.pbs.org/wnet/onourownterms/ and you'll find some related information and support material.

As some of you may know, end-of-life is my second passion after dementia, following the experience of my father's death last April. Today I was asked to sit on a panel arranged by Dr. Carolyn Bennett, a Liberal MP for Toronto interested in the issue. The day featured Senator Sharon Carstairs who flew in from Ottawa for the afternoon. Senator Carstairs is on the Senate sub-committee that created the latest report on the dismal state of end-of-life care in Canada.

I shared the panel with two physicians, a hospice board member, another family caregiver who recently lost her 45 year old husband to cancer and Senator Carstairs. It was a good session; we all spoke about end-of-life from a slightly different perspective but all loudly proclaimed that we need better quality of care in this country. After the session I was approached by a man who is on a committee trying to come up with a consumer-based strategy for improving end-of-life care. Apparently there is funding available for this so I agreed to attend the next meeting to contribute what I can.

When it was my turn to speak I thought I would be able to get through it without breaking down but not so. Not yet. I pretty well cried throughout but apparently managed to get my message across...

October 25/2000
Spent all day in a dementia conference. Shelly Weaverdyck from Ann Arbor led the day and she was fabulous. I had heard her a few years ago and knew I would enjoy meeting her again. She presents information in a way that is very practical and useable, especially for front-line staff. I got some new ideas on how to organize my dementia section on How to Care (www.howtocare.com) - when I find the time.

When I had to stand to introduce myself, explain what I do and what I hoped to learn from the day, I broke down once again as I spoke of my father and the end-of-life experience I had with a demented parent. I wonder when I'll be able to speak about dad's death without crying. I wonder if I should seek some grief counselling; I know there is a lot going on deep down somewhere. Maybe I need help bringing it to the surface.

October 27/2000
Off to Philadelphia for the weekend to speak at the Well Spouse Foundation annual conference. Although this has been in the planning for many months I did not know much about the group except what I learned from their web site (www.wellspouse.org).

I can't tell you how impressed I was by this group of people, all of whom have a chronically ill spouse or have lost a spouse to illness. They are a wonderful combination of energy, commitment and optimism in spite of what they face; they welcomed me to their group immediately. Many had spouses with MS, some with ALS and others with stroke. The average age was probably in the late 50's or early 60's but there were older and younger spouses. I spoke about guilt on Saturday and on Sunday gave a presentation on using the Internet to reduce caregiver isolation. Both were well attended and appreciated. On Saturday night there was a dance and I must say I danced my heart out...I have always loved to dance and find it a tremendous stress-reliever. I danced a lot with a man from New Jersey whose wife was had MS for 15 years and he is only in his 40's. Pretty sad. If you are a well spouse in the US I encourage you to contact this organization. I can guarantee you will be glad you did. How about Canada? We need such a group here!

I stayed over an extra day to explore Philadelphia. I always take a trolley tour of a city; find it very interesting. I love to learn and this is a way of improving my historical knowledge. The weather was cool but sunny. I ran every day and enjoyed the brief few days away from computers and phones. Oreo stayed with friends of mine who were trying her out to see if they want a dog. Well, Oreo sure was a hit. Barb was reluctant to give her back!