My name is Jane and my husband of 36 years was diagnosed with Dementia/Alzheimer’s about three and half years ago. This blog is a tale of our lives after “Al” (the name I’ve given Joe’s disease) moved in. In the two years since I began this blog, it's been read in over 25 countries. It really is "AL" over the world. Thanks for coming along with us down a path of uncertainty. Joe passed on November 19, 2016.
Sunday, March 27, 2016
ALZHEIMER'S: A PATH OF UNCERTAINTY
Joe's Imitation of Hemingway
It’s been a
busy and difficult week, one I created myself but nonetheless, frustrating. I spent most of the week trying to refine a
care plan for Joe with serious attention to alternatives. Not that things have changed greatly, but we know
more now than we did almost three years ago when we started down this uncertain
Back then our
plan was simple and probably naive. After
all, we had no first-hand experience with Al; we were still reading basic definitions
of the disease, shaking our heads trying to understand what this monster was
We realized without
long-term health coverage, costs could soar. We would need to down-size, cut
expenses, and ready ourselves for the long haul. I would be Joe’s chief caregiver so he could stay
in our home. If his care required more
than I could manage, I would hire in-home services to fill the gaps.
Way back in
the Middle Ages when I was working in high tech as a Project Manager, one of my
jobs was “alternative planning”, a “what ifs” approach to managing risk in case
bad stuff happened to original plans. It’s
like the old adage, “don’t put all your eggs in one basket”. You need a plan that
leaves room for change if (or more likely when) things go sideways.
So I applied
that same thinking to our care plan. If
at some point down the road Joe needs more care than either I or in-home care
services can provide, we would look at (I can barely type the words)
This is when
the tears well up. Of course, institutional
care isn’t what they call it. It’s
called a “memory care center” because that sounds much nicer. Last week I
visited several centers, but I’ll only talk about the best one. Frankly the
others are too upsetting.
by a very personable woman (I’m thinking young for this type of work). We walk through what is clearly a new
building with contemporary art lining the corridor like an upscale hotel. We go through a double door entry where she
presses a button and we await permission to enter a lockdown facility, made to
protect the people inside from the real world outside.
Someone in scrubs
greets us as we enter a large common space lined with sixteen private suites
decorated with front porch facades. My
guide explains they try to mirror the feeling of home, allowing each resident
to furnish their own space. To my right
is a brightly colored room filled with a doll house, coloring table, various
primary books and stuffed animals. My
first impression is that it’s a children’s daycare, but I’m told it’s a living room
where residents can amuse themselves.
Back in the
common area several residents sit in club chairs in front of a fireplace. My guide speaks to one of them, a frail woman
with snow white hair, asking permission to show me her room. I notice she’s petting a cat that’s sitting on
her lap; as we pass, I see it’s actually a stuffed animal. I smile and thank
her but she doesn’t speak.
It’s a good
sized room with a private bath and many personal items. The guide tells me residents often put
something outside their door to help them find their own rooms.
to the back of the common space passing a man sitting at a large communal bar busily
working with paints, creating his version of a Picasso. We pass through another security door to an outdoor
space encircled by a tall iron fence. There are patio chairs and shaded areas and I
hear a waterfall in the distance. I’m told the nearby raised vegetable garden
is tended by residents.
stop in the tour is a dimly lit media room with stars projected onto the
ceiling and a very large water bubbler to promote relaxation. One wall is covered by a big screen television
monitor proudly described as a new feature allowing residents (with considerable
help) to view their picture files and even Skype with family.
I know much
thought and consideration has gone into the planning of this nice facility. But any way I slice it…I don’t want Joe to go
As we finish
the tour, I ask about costs and am provided a sales brochure with center page
titled “Supplemental Charges”, noting room rates beginning at $5,530 per month for basic services.
predicted inflation of health care costs over the next five years those
services could easily rise to $8,000 per month.
I’m told the average resident lives five to eight years in such a
facility. Do the math…I don’t know too
many families that can sustain such costs.
I have the
urge to shout, “WHY ISN’T SOMEONE DOING SOMETHING ABOUT THIS?” It’s impossible to think 5 million families
in the US are up against this.
I’m going to
write letters to my Congressmen and Senators.
I’m going to submit articles to the Op-Ed section of the newspaper. We’ve got to attack and defeat Al before he
bankrupts our nation. This isn’t some
politician’s rhetoric, it’s a real and present threat with the generation of
Baby Boomers who will soon be lining up for “Memory Care Services”.
I’m going to
calm down and get back to alternative planning for our life with Joe and Al at
the edge of uncertainty.