My mom is 79 and dealing with the ravishes of Alzheimer’s
and the accompanying depression and anxiety.
There is a family history of Alzheimer’s and mom was always
sure she would develop it. I know the anxiety always weighed heavily on her.
Mom’s anxiety impacted her even as a young mother and wife. She
was and is a beautiful, vivacious and intelligent woman with limited energy
stores. When her energy level would drop and the stress of life would increase,
especially if she had a deadline at school or even planning a family and
friends event, she would be prone to outbursts and tantrums. We did a lot of
tiptoeing during those times. We knew we had to do little extra around the
house, as mom would then go to bed. Dad’s mantra became, “Do it for your
mother, it will make her feel better.”
As a child I didn’t understand these events or have the
cognitive ability to process them. I simply took them as meaning that I was bad
and I better do something to correct it.
In my perspective this set up a family dynamic and pattern.
Mom would have these events and my sisters, dad and I would work to make
everything around her clean and orderly so that she would feel better when she
got out of bed.
She was frequently felled by migraines and as she got older
she starting having other physical issues. When she was in her late 40s and
early 50s she had a problem with her throat that lead to seeing ear, nose and
throat specialists and as she aged she started having various aches and pains
leading to a diagnosis of Fibromyalgia many years ago.
She developed stomach problems and self-diagnosed a gluten
allergy. She cut out gluten and still has stomach issues.
One of my favorite stories was when she called us all in the
spring of 2008 to tell us the doctor had just left a message on her answering
machine that the pain in her leg was lymphoma. The next day she
went to the doctor to find out it was a lipoma. A fatty benign tumor in her leg.
Mom also can’t hear very well and for some reason doesn’t want to or can’t wear
hearing aids. This also impacts her interpretation of every conversation.
When I took her to Boston for the lipoma appointment and
they explained everything to her and how they didn’t need to operate she again
complained about the pain but pointed to the wrong leg in talking about how it
hurt.
As the years progressed we began to see a decline in her
cognitive abilities at the same time that dad was handling diabetes and beginning
to walk with very small steps and losing his once robust energy. His doctor
decided that he needed his leaky heart valve replaced and he had surgery in
November of 2009. This operation started a rapid decline in my dad. The biggest
issue was the damage to his cognitive ability and his energy issue was not
fixed.
Parkinson’s disease ultimately was the cause of dad’s energy
issue and the short steps.
This is the point where daily tasks and living on their own
began to become very complicated for mom and dad.
Dad could no longer, “Do it for mom to make her feel
better.” And mom’s anxiety and depression began to mount, leading to further
physical pain issues.
She developed a focus on the smell of dad’s urine. He
had to use Depends because of a major blander issue. We used to laugh that even
though dad walked very slowly and owned several acres he couldn’t pee outside
because mom had a sensitive nose and could smell it.
They each had events caused by their individual and
collective diseases and personalities and they decided to move to a beautiful
apartment and assisted living facility in Blue Hill, Me.
As with any move, this was a stressful and emotional event.
They were leaving their beautiful retirement home on the ocean that they had
worked their whole lives to build.
For the first few weeks of their move they seemed to be ok.
As mom told me on a walk her biggest issue was the smell of dad’s urine.
After a few weeks mom started to complain that her throat
was constricted when she was in the apartment and she was convinced she was
allergic to the carpet. We had the carpet cleaned, did several tests with mom
in and out of the apartment, had mom see a specialist and by all accounts
everyone agreed that it was highly unlikely that she was allergic to the carpet.
Mom persisted and became obsessive in her pursuit to have dad allow her to have
the carpet taken out. Many mornings she would stand over him yelling that he
didn’t love her and that the carpet was killing her.
I witnessed some of these events and watched, as dad would
simply slump in his chair with his head down as she stood over him yelling. She
would then leave the apartment and slam the door. Then dad would turn to me a
say, “She does this everyday.”
My sisters and I did our best to negotiate and look for
solutions. They both went to counselors but the stress and all of dad’s illnesses caused him to break down and he had several events that lead to a single,
irrational, angry suicidal event for dad.
We knew at that point that we had to get him in his own
place with proper care. After a brief stint renting a house and having people
come in to help with his care we moved him to the Maine Veteran’s Home in
Bangor. He has adjusted well and is thriving.
We also moved mom to another apartment and had the carpet
removed. She has had a hard time adjusting to living alone and had many, many
issues related to pain. Her constant need for pain medication and complaints
that literally extend from head to toe have overextended the nursing staff and
we have hired additional care for her.
My sister Lynn has been incredible in organizing visits
and visiting mom and dad. My sister Lorna manages the finances and visits more
often than I do because of her proximity. Fortunately we also have a deep love
and respect for each other, which allows us to work together for mom and dad’s
care with honestly and kindness.
This past week I brought both to our family camp to be
together for three days. It was simply the best thing I have ever done with
them.
Their first night in bed together at camp after several
years was touching, funny and loving. I captured a brief clip on video and it
is inspiring, especially when you juxtapose it against the process they have
been through over the last few years. It reinforces that true love is possible.
I was also able to capture a conversation that I had with mom.
She had no pain while she was at camp and was surprised by how good she felt.
This lead to a wonderful conversation about how the mind and emotions impact
the body.
Because of her Alzheimer’s she may not remember this
conversation or how she was able to understand this connection. I hope that every once in awhile she can watch this video and her own words and
thoughts will help her to feel better.
I guess I am stilling trying to “Do it for my mother because
it will make her feel better.”
I hope it works.
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