I'd like to
share with you a very personal, non-clinical view of why assisted
living may or may not be a good option or choice for a senior
- specifically, in my family's case, Dermatomyositis.
I have to start by saying
that a little over a year ago, I had no idea what this condition
was. After I first learned about it, I didn't really think it
was that serious. I mean, anything with Derma, or skin, should
be treatable, and is only external, right?
[Video] Basic Overview of Dermatomyositis
I originally included this video, as it gives a very basic overview of the "lighter" stages of DM. I received an email from one of our site visitors, who has a lot of problems with this video since it downplays how serious it is. She makes a great point, and I did a post about how Dermatomyositis Is Deadly Serious - as it cost my mother-in-law her life in a very short period of time.
I couldn't have been
more wrong. This disease ended up costing my mother-in-law her
life in a very short period of time.
About two years ago,
my mother-in-law, who was turning 80, was the rock-star grandma/mother
that did everything, and could do anything. She actually wore
the rest of us out with her boundless energy, never-ending to-do
lists, and constant conversation. She was a true fireball with
high-water pants and a strong 'Yinzer"
accent. She doted on her grand kids, and spoiled them pretty
On one of our last visits
cross-country to visit her during the summer of 2010, we noticed
something was a little off with her. She seemed like she might
be finally slowing down, and since she was starting to blow
past stoplights and becoming a bit of an erratic drive, we figured
that possibly assisted living might be in her near future.
We were right, but wrong
at the same time. Turns out that she had Uterine Cancer
Stage 3, and it had spread throughout her body. That explained
to us the compromised energy level and generally worn look about
My mother-in-law is
a weird sort. She is very conservative in many ways. A devout
church-goer, and a teetotaler to the nth-degree. On the other
hand, I think she is a born-again granola from the 60's. Everything
organic, yoga and meditation, and supplements all over the house.
She was a model of health and vitality. This, however proved
a bit of a problem, as she really resisted the idea of traditional
worried all of us, since her condition was pretty bad. Thankfully,
she relented and decided to go the traditional, toxic route.
We didn't like the idea either, but to us, there was really
no other option.
She beat it - so we
thought. About a year later, and after countless treatments
and bodily invasions, as well as surgery to remove her uterus,
she was, by all appearances, on the mend, and possibly cancer-free.
To celebrate her newfound
health, and slowly reappearing hair, we took my mother-in-law
on a trip to the beach at one of our favorite spots in California.
She made the trip from Pennsylvania on her own and we spent
a week in the sun - a family on the mend.
She was a fireball again
- charging up and down the steep hill from our condo to the
pier and the beach. She was tireless, and her old Yinzer sparkle
and grittiness was starting to re-emerge.
This was in
July of 2011. By May of 2012, she would be gone.
She left from our wonderful
trip to get back to her life, friends, and newfound lease on
life. Remotely, we thought everything was going great, and that
we would see her again at the holidays.
By October, we started
to wonder if something was off again. One of the main problems
we had with my mother-in-law is that she is pretty proud, stubborn,
and stoic. She doesn't like to complain, or be a bother, so
on the phone, everything was fine. Her voice, though, was getting
raspy, and her characteristic hour-long Sunday phonecalls to
us were getting shorter.
It wasn't until a neighbor
came by to check on her in the fall that she noticed that our
mom couldn't raise her arms to open and close cupboards, or
to adjust the blinds. The neighbor called my wife, who she had
known from growing up in the neighborhood, to tell her the disturbing
thing she had just witnessed.
Mom, as it would
turn out, had Dermatomyositis.
Of course, standard
protocol for this condition is plenty of meds that are very
toxic, and very hard on your body. Mom started taking these,
but to only be met with nasty side effects, fatigue and all
the rest. Still, she remained stoic, insisting she could manage
life on her own. We believed her.
As we neared the holidays,
we were looking forward to seeing mom, but we were also anxious
to get a first-hand assessment of her condition. However, we
never made it to that point. Again, a well-intentioned neighbor
went to check on her, only to find mom 'scooching' on her back
on the floor to get from room to room. She couldn't stand up
anymore, and didn't bother to tell anyone. She went to the hospital
that day, and never again returned home.
Skilled Nursing, to the Hopes of Assisted Living
Mom spent several months
in a hospital room, barely able to move, unable to swallow,
and essentially bed bound. She hated it, and wanted to go home.
However, her condition warranted round-the-clock care and supervision.
She was placed on a feeding tube, and for the rest of her time
on Earth, that is how she enjoyed her meals.
Once her coverage at
the hospital ran out, she was transferred to a Skilled Nursing
facility nearby who could handle her condition, and the feeding
tube. This facility was not a 'choice' but was the default place
that she had to go, as there were not other places in the area
with the care available that she needed. She was an advanced
This facility she was
living at - she hated it as well. She knew nobody, and it was
stuffy, and too hospital-like. She wanted the option to move
into an assisted living facility. Some friends of hers lived
in a facility not too far away. She wanted something better.
Remotely, my wife and
I (and her brother and his wife) started researching the possibility
of assisted living, either in her state, or perhaps nearer our
family here in Colorado, or perhaps in Michigan where my wife's
We struck out on ever
attempt, and almost universally got the same reply from all
of them. "We can't accept a resident who is on a feeding
tube." That was the answer across the board. Many of them
said that if we could get her off of her feeding tube, they
So, from there, our
mission and goal was to get mom eating and swallowing correctly.
Mom would have a formal 'swallowing test' every few weeks, and
every time, she failed. Her spirits were always positive and
good, but we knew her condition was rapidly deteriorating.
Her only request was
that she did not want to die in the skilled nursing place she
was in. She wanted to pass at home. However, she was too weak
to move, and the hospital, her doctor, and the nursing facility
would not ok her to travel.
In vain, we
went back to trying to get her to eat solid food. It never happened.
Mom passed away in May
of 2012 in the nursing facility she hated so. We were all saddened
that we could not get her out in time - to a more comfortable
place to heal, or to live out her days.
In the span of 10 months,
she went from healing, tornado-of-activity grandma to moving
on to the 'next great adventure.'
I wish that I could
say that assisted living is applicable and appropriate to a
seniors with Dermatomyositis. I think that, as in our mom's
case, knowing that she was on the quick decline, Skilled Nursing,
or perhaps intensive, round-the-clock in-home care were the
only real viable options. We all think that the chemo and treatments
she endured for her Cancer probably accelerated her Dermatomyositis,
and compromised her immune system.
I would submit though,
for anyone going through a similar situation, to research options
as far in advance as possible, and to ask pointed questions
about things like feeding tubes, and what happens if mom is
placed into assisted living care, and they can not longer handle
her (or dad, if that is your case). Depending on the severity
of the condition, assisted living may be a good option, especially
if there are plenty of facilities to choose from in your area.
In other cases, as in ours, it may not be realistic.
As I have learned, this
is a progressive condition, and is only likely to get worse
as time goes on. Ideally, so a loved-one isn't faced with multiple
moves, finding a Continuing Care
facility that offers a combination of assisted living and skilled
nursing services under one roof would probably
be an ideal situation.
For us, we actually
solicited the help of a certified senior
care advisor, who, for us, was extremely helpful. Just having
someone knowledgeable with state laws, as well as assisted living
regulations, eligibility requirements, and who had a network
of contacts in the industry - was invaluable to us during the
Share Your Story
If you have had a similar
experience with Dermatomyositis, and trying to place yourself
or an elderly loved-one into a care environment, we really encourage
you to share your insights via the comments section below.
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