It’s
been more than two months since the Branchburg Race Against Alzheimer’s, and
almost that long since my last blog entry.
I’ve had many reasons and events to blog recently. The truth is, it’s been harder to find the
time to do it. Work and my kids’ lives
have been a constant for me, but caring for Marcia has reached a stage where
changes in her schedule are needed. It’s
been two and a half years since Marcia’s diagnosis, and there have been
inevitable changes. But progression also
results in milestones, and milestones sometimes result in exponentially more
time consuming activities. A year ago,
we were dealing with Marcia no longer driving.
This summer, Marcia has given up running (the Branchburg Race was her
last), and now we are seeing the end of her career as a fitness instructor.
At the
end of July, when Marcia was in Maine with her family, both HealthQuest and the
YMCA decided they couldn’t keep her on as an instructor and let me know that
she wouldn’t be on the schedule immediately at the Y, and after the August
session at HealthQuest. Both have been
incredibly supportive of Marcia and stayed with her as long as they could. But there are liability issues, it’s not fair
to those who take the class, etc…. The
night Marcia got back from Maine, I broke the news to her. I’ll never forget the sound of her voice when
she said “really?” Crystal clear,
totally surprised, and completely heartbroken.
I’ve seen Marcia cry from time to time since her diagnosis, but not like
this. Tonight she cried herself to
sleep. Not me though. I couldn’t fall asleep so easily….
As
Alzheimer’s progresses, independence becomes more challenging. Every weekday Marcia has been getting out of
the house to teach her classes, exercise and run errands with friends. She’s generally home alone for a few hours
every day and since she’s not running/jogging, cooking, or doing anything else
where her safety is in jeopardy, I haven’t worried too much about her being
home alone to this point. Generally she
watches TV, takes naps, does laundry, waters the plants and does other things
around the house. Our concern about her
being alone is growing, and now that teaching is reaching an end, I’m looking
at options to fill the void teaching filled, while ensuring she’s safe. In late July, when Marcia was in Maine, I
spent part of my vacation talking to people from a few home healthcare
companies and visited two local Adult Care Centers. For now, I THINK the best option for Marcia
is a few days a week at one of the Adult Care Centers. Marcia looks for every opportunity to get out
of the house. She’s still very social
and enjoys being around others, even if she can’t communicate as well as she
would like. If she likes the Day Center,
and as the need arises, increasing to more than a few days a week is an option.
Both
Adult Centers think Marcia could be an asset to their daily exercise classes
because she has credentials in leading active older adult classes (she lead a
chair exercise class for senior citizens at our church for 15 years). She is also comfortable around older people
since that has been her focus for 30 years with the YMCA. So I’m hopeful she will embrace Adult Day
Centers and enjoy the company and activities they provide. There are many similarities in both
facilities in that they are secure, relatively new, have many activities and a
good staff to attendee ratio. One
specializes in dementia, but doesn’t provide transportation and isn’t as close
to home as the other one. While it
doesn’t provide transportation, it’s on my way to work, but the hours of
operation wouldn’t be ideal with my work hours.
Based on what I saw, I would be comfortable with either for Marcia and
will likely look at the one that’s a little closer to home and provides
transportation, as that’s a nice option to have, even if we don’t use it right
away.
What
has kept me busy this summer, and my advice to anyone going through life with
Alzheimer’s? Prepare for the next steps
in the disease, while making the most of the time together in the current
stage. Update your will and review it
every few years. While we updated ours
right after the diagnosis, I met with our attorney to further tweak parts of it
a few weeks ago. Prepare for alternate
care in home or outside of the home. We
are looking at Day and Home Care options and both are recommended before the
need arises. And now that her paid
career is over, we are applying for Social Security Disability and how to
activate our long term care insurance.
These are things that aren’t fun to do, but lessen the stress of the
disease on our family in the future.
While
these are not the things I hope my kids write or talk about when they go back
to school (they worked, played lacrosse, soccer, began training for cross
country and fencing, saw every movie released this summer, etc…), I’m blessed
to have had counsel of friends and family to help me through this stage. Family has been there to provide support from
a distance, and my friend Jen put me in contact with a friend who is in the
Adult Care business, who put me in touch with at least three others. All have been wonderful and freely given
advice, contacts and treated me as if we’ve been friends forever. I’ve also received many encouraging calls,
emails, texts, etc…. People are amazing,
if you give them a chance to help. And I
could NOT handle this without such support!
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