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...
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.
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!