I first noticed signs of concern during a wonderful post-retirement
trip to Europe in the fall of 2006. My
wife, Clare, was exhibiting behaviors I had never seen before and I was worried. Clare was misplacing and losing objects in
restaurants and hotels. She was
forgetting basic information, such as how many children and grandchildren we
have. She was describing trips to
countries we had never visited. And
despite always having an excellent sense of direction, Clare was now getting us
lost on a daily basis. When we returned
home, I went online to several reputable websites and discovered that all of
these behaviors were early warning signs of mild cognitive impairment and/or
Alzheimer’s disease (AD). Although Clare
denied having any problems, I convinced her to see a neurologist. She saw no need to do so, but agreed to do so
to “ease my mind.”
I shared my observations with the doctor on our first visit and
he asked Clare many questions. He then
had an assistant give her a quick cognitive screening test and Clare received a
near perfect score. The doctor told us
not to worry ... that everything I had observed was probably due to the stress
of our very active early retirement and all of our travel, and he suggested
some ways for Clare to lessen her stress.
One year later I was now observing even more behaviors that
worried me. I raised my concerns with
our internist at our annual physical exams.
He administered a cognitive screening test and Clare again received a near
perfect score. His diagnosis was mild depression
and he placed Clare on anti-depressant medication. Clare took this medication only briefly,
however, due to side effects. However, I
remained fairly certain that Clare was suffering from mild cognitive impairment
if not already in the early stages of AD, despite what our doctor had said.
In the early fall of 2008, we returned to the
neurologist. By this time I was keeping
weekly logs of Clare’s worsening symptoms and new troublesome behaviors, and I
shared these logs with the doctor. I
noted how Clare kept asking me the same question over and over without any
recollection of having just asked me that same question minutes earlier. I indicated that Clare’s aphasia was getting
worse, and how she also was experiencing frequent agnosia, often unable to
”see” objects that were literally right in front of her. I told the doctor that Clare was forgetting
how to do things she used to do routinely on the computer, and had lost
interest in hobbies she had previously enjoyed.
She was also getting lost while driving in our community.
The neurologist ordered more comprehensive testing this time
... more cognitive testing, complete blood work, and a brain scan. When we met with him to review all the test results,
he indicated that whereas he saw no evidence of early stages of Alzheimer’s, he
did see a negative change in her cognitive testing. However, he still strongly felt that Clare
was basically fine and he could see no definitive signs of AD. He said that Clare’s memory issues and some
aphasia that surfaced on the tests were probably due to anxiety and he placed
Clare on anti-anxiety medication.
By winter, Clare’s symptoms were worsening, despite the
latest medication. I asked Clare to let
me find another neurologist for a second opinion, but she adamantly
refused. I tried to convince Clare that,
according to any reputable website I had consulted, her symptoms were not due
to stress, anxiety, or depression.
Clare, however, insisted that there was nothing really wrong with her
and that the current neurologist had said words to that effect. So, we returned to that same neurologist and this time Clare’s results on cognitive testing were extremely poor. The surprised neurologist now issued a diagnosis
of severe cognitive impairment due to depression, and arranged for Clare to
meet weekly with a cognitive psychologist.
He also strongly suggested a series of individual cognitive fitness
training sessions offered by an assistant for an additional fee in his office
that could begin in about 3 months, and said that all of this, along with some
new medication, should result in Clare’s symptoms improving a great deal within
6 months.
After 3 months of weekly visits with the cognitive
psychologist, and one week before Clare’s cognitive training sessions were
scheduled to begin, Clare’s symptoms continued to worsen further. I confronted the psychologist in Clare’s
presence and asked if he were in my position with his wife, wouldn’t he take
his wife to another doctor for a second opinion? Thankfully, he indicated that he would, and I
turned to Clare and asked, “So now can we get a second opinion?”
Clare reluctantly agreed and I told her that I had
researched three new doctors, two neurologists and one geriatric
psychiatrist. In the spring of 2009 we
met with a geriatric psychiatrist associated with a hospital-affiliated
Alzheimer’s Disease Research Center.
Before that first testing session was even completed, the doctor told me
that whereas it was too soon to tell if Clare had AD, her problems were
definitely not due to stress, anxiety, or depression and he wanted her off all
of that medication. After much more
testing over the course of the next few months, Clare was diagnosed with
early/young onset AD. She had just
turned 63.
In 2011, as Clare’s AD continued to worsen, I started her in
a social model day care program one day each week. By 2013, Clare was attending day care
programs four times per week. It was becoming
increasingly clear to me that I would soon no longer be able to properly care
for Clare by myself at home. Prior to
retirement we had discussed our preferences should either of us ever need long
term care, and we both decided we’d prefer placement in a facility rather than
hiring 24/7 aides for our home. In September,
2013, Clare was admitted into an Assisted Living Residence (ALR) dementia wing. My role then changed from being Clare’s 24/7
caregiver to her daily part-time caregiver and her full-time advocate.
Clare has become more and more confused, frail, and
dependent upon others since placement. Except
for music, her short and long term memory have basically vanished. On most days she is unable to recognize our
children and grandchildren, but Clare still knows me, recognizes me as her
husband, and misses me when I am not there.
However, on one recent occasion she has kissed a male ALR resident on
the lips and given him a good night hug thinking he was me.
Clare and I were very fortunate to experience a “fairy tale”
marriage. We met right after our
sophomore year of college, became engaged during our junior year, and married a
week after graduation. We had been best
friends before our marriage and have been best friends and deeply in love ever
since. However, due to Clare’s worsening
AD, we obviously no longer have the same relationship we once had. In many respects, our relationship now is
more akin to parent/child rather than husband/wife. I visit with Clare each day but we can no
longer talk about anything for more than a few seconds before she gets very
confused. I miss not having
conversations with Clare. We can no
longer play games, travel, or engage in sports together. We can no longer share virtually any of the
activities we used to engage in together.
I miss all of that, too. But each
day we find time to hug, cuddle, and kiss ... often on the couch while watching
TV in one of the ALR’s many lounges ... and still see musicals in neighborhood
theatres and take walks at a nearby beach when the weather cooperates.
I still love Clare deeply and she still loves me just as
much. That will never change. But aside from no longer being able to share and
discuss matters or participate in most activities together anymore, we have not
had a fulfilling sexual relationship in many years. And, as Clare fades faster and faster, I know
that it won’t be long before Clare no longer recognizes me or knows who I am
with certainty. In many respects, it is
as if I am now already widowed.
I have reached the stage where so many Alzheimer’s spouses
find themselves ... married, yet widowed at the same time. My best friend for nearly 50 years, my
lifelong partner, my lover, my wife, my children’s mother ... all of these
roles have already faded or are fading rapidly.
I am learning to do more things by myself, alone in a house we had lived
in together for forty years. Going to
sleep in an empty bed was incredibly difficult that first night after Clare was
placed. It’s now well more than a year after
Clare’s placement and coming home to an empty house and an empty bed is still
difficult. Doing everything by myself
that we once did together is also very difficult at times. I still find myself crying at my loss ... at
our loss ... of the once bright future we had as young retirees that came to
such an abrupt and premature end due to Alzheimer’s.
I miss all of the social, emotional, and physical parts of
our once close relationship. A lot. But while Clare is still able to tell me she
loves me, even if unable to function as my wife, how can I “be with” another
woman without feeling tremendously guilty?
I’m human and still in my 60s ... I have physical desires. Ironically, I can still have sex with
Clare. Although she has had absolutely
no interest in having sex for several years ... and, in fact, will giggle like
a child if I hold her in a “private place” ... she will still do anything for
me much like a child wants to please a parent.
Yet were I to take advantage of her willingness to please me, I would
feel like I’m taking advantage of her, not enjoying mutual sex.
I still love Clare so much, and she still loves me so much,
so how can I “date” another woman for companionship, let alone go to bed with
and have a physical relationship with another woman, while Clare is still alive?
I am an Alzheimer’s spouse.
I am married to the love of my life, but except for a few hours each day
I am living completely apart from my wife knowing that her AD will worsen more
and more until certain death. I now live
most of my life as a single man. In a
very real sense, I am already widowed. I
am an Alzheimer’s spouse ... married, yet widowed, at the same time.
Published in AFA Care Quarterly, Spring, 2015, pp. 13-14. Access at: www.alzfdn.org.
