Good afternoon! Regardless of where you are in the caregiving
process, I hope that something I’ll say today will be helpful to you.
I was asked to address a
two-part question: What was it like to be in my shoes as an Alzheimer’s
caregiver, and given that experience, what recommendations do I have for other
Alzheimer’s caregivers.
First, a little
background: I’ll be 71 years old next
month. My late wife, Clare, and I had
what we often described as a fairy tale marriage. Clare died 19 months ago, one month shy of
her 70th birthday, and 2 months shy of our 49th
anniversary. She battled Alzheimer’s
disease for nearly 10 years. I was her
24/7 caregiver at home and then served as her part-time caregiver when
she was in assisted living, a psychiatric hospital, a regular hospital, and finally
in a nursing home. I started writing for
publication out of frustration while watching Clare being misdiagnosed, in my
opinion, for nearly 3 years. She was treated
first for stress, then anxiety, and then for depression when I was already
convinced that, even though only 60 years old, she was already in the early
stages of young onset Alzheimer’s.
So, what was my experience like
as an Alzheimer’s caregiver? It was probably
very similar to many of your experiences.
My life was one of non-stop daily stress, with much sadness and anxiety,
often accompanied by periods of mild and/or serious depression, along with
intense feelings of doubt, guilt, frustration, and many other emotions. Similar strong emotions often result in many
caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting
regularly with therapists, or experiencing dramatic weight gain or loss. In my case, stress drove me to my comfort
foods. I gained nearly 100 pounds during
those 10 years, and it’s only been in the last year that I’ve been able to
start taking off some of that weight. I
also developed eczema on my face.
As many of you already know,
helping a loved one with Alzheimer’s just with the activities of daily living ...
basic hygiene, dressing, eating, etc. ... becomes progressively more difficult. Caring for a loved one who is constantly confused,
no longer remembers your name or who you are, or who can occasionally become aggressive,
is emotionally painful. When Clare was placed
in an assisted living facility, or admitted to hospitals after various falls, or
had to spend 3 weeks in a psychiatric hospital when the assisted living
facility could no longer handle her ... and then, finally, when she was placed in
a nursing home ... I still served as her sole caregiver for several hours each
day.
But caregiving was then no
longer my primary role ... my role had morphed from primary caregiver to primary
care advocate, making sure that she was being treated properly each day. But that new role was also incredibly stressful. Even though Clare was in excellent facilities,
many staff members were not sufficiently motivated, educated, or trained to
consistently provide proper care, and that led to many meetings with administrative
staff.
There is also a tremendous amount
of financial stress faced by most caregivers.
Unless one qualifies for Medicaid, is very wealthy, or is lucky enough
to have outstanding long-term health care insurance and prescription drug
coverage, caregiving costs can be astronomical.
Again, as I’m sure many of you already know, for someone with
Alzheimer’s here on Long Island, assisted living facilities can easily run
between $7-$10,000 per month ... or more ... and nursing homes will charge about
$15-$18,000 per month ... or more. 24/7 home
health aides will cost about $15,000 per month ... or more. Caregiving costs can drain not just your
loved one’s bank account, but also the retirement life savings that you’ll need
as the surviving caregiver.
Once Clare entered assisted
living, I suddenly had to deal with daily loneliness and enormous life style
changes. Going to sleep all alone in bed
those first few nights after placement was painful and lonely beyond words, and
living alone for the first time after so many years of marriage brought incredible
sadness. I felt that I needed to be with
Clare every day, so I visited her daily for 4 hours and I also took her out for
longer periods a few times each week. At
a certain point, facility social workers, observing my stress, suggested that I
not visit so often. I tried doing that
for a week or two, but I missed not seeing Clare so much that I went right back
to visiting her daily.
One article I wrote during
that time was titled, “An Alzheimer’s Spouse, Married Yet Widowed,” because I truly
felt both married and widowed at the same time.
I loved being with Clare each day, even when she no longer knew who I was
or that we were married. But many days
were extremely painful. We would be
cuddling on a couch in the facility lounge, I’d tell her I loved her, and she’d
say to me, “I love you too ... but can you please help me find my
husband?” It is no surprise to me that studies
consistently find that caregiver stress is a significant factor contributing to
caregiver mortality.
One person in my Alzheimer’s
support group said that caring for her husband was “grief on the installment
plan.” I couldn’t agree more. I experienced what psychologists refer to as
“anticipatory grief” for so long that I didn’t expect Clare’s death to hit me
as hard as it did. But I was very wrong. Her death hit me very hard. But, fortunately, last month I was able to
post a personal blog on my website titled, “Finally Moving On With the Rest of
My Life.” I still miss Clare every
single day, but that persistent daily depression and horrible gut-wrenching
pain and anguish is now gone. I know
that there will still be times of immense sadness, along with many tears, but at
least I have finally climbed out of my black hole.
That’s an overview of how
life was for me as a caregiver. With
respect to tips for fellow caregivers, I’d like to offer some revised excerpts
of another one of my articles, “5 Steps for Alzheimer’s Caregivers.”
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Once a loved
one receives an AD diagnosis, there are five actions that caregivers and their
loved ones should take as soon as possible.
1. Meet with an eldercare
attorney. The attorney will
review and/or prepare necessary end-of-life documents ... wills or trusts,
living wills, health care proxies, and durable power of attorney. Discuss long-term health care options. If you have long-term health care policies, review
the provisions together. Also, ask the attorney
to review your current financial situation to determine if any assets in your
loved one's name, or in joint/custodial ownership, should to be moved solely to
your name.
2. Meet with a certified
financial advisor. You and your financial
advisor should discuss how to preserve, protect and grow your current income,
investments, and other assets, and discuss plans for how you will pay for long-term
care.
3. Discuss long-term care
options. What will you do if no longer able to care
for your loved one at home? Does your
loved one prefer to stay at home for as long as possible, or prefer to be in an
assisted living facility or nursing home? What do you prefer? If not discussed previously, now is the time
to have these discussions to insure your loved one's input and allow some lead time
to visit facilities if your loved one will not be remaining at home.
4. Educate yourself at
responsible websites. Major hospitals such as Mayo Clinic and Johns Hopkins, and organizations such as the Alzheimer's Association, have websites with lots of helpful information. There is also a wealth of excellent information
at government sites sponsored by the National Institute on Aging and the
National Institutes of Health.
5. Join a support group. Try to find a support group that meets solely for
caregivers in your position ... for example, just for spouses, or just for children.
Such groups can focus more sharply on common
issues. But if you cannot find such a
group, joining a mixed group is better than no group at all. Try to find a support group meeting weekly, but
a group meeting bi-weekly or monthly is better than no group at all. Good support groups can provide many helpful
suggestions and emotional support from fellow caregivers who "get it.”
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If I wrote that same article today, however, I would add 2 more
actions that caregivers should take:
Number 6. Check out websites maintained by other
caregivers. One or more may provide you
with helpful support and guidance. I
don’t promote my personal website with advertising, but caregivers still find
me because but my site gets more than 1000 visitors every month. Many caregivers read my articles there, not
in the journals, magazines, or newspapers I write for, and email me with comments
and questions.
Number 7. If you have planned to take any trips with
your loved one a year from now, don’t wait that long. Take those trips now or in the next few
months because your loved one may not be able to travel a year or even 6 months
from now.
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Caregivers who act quickly on the recommendations I’ve offered
today will be in better shape to cope with what lies ahead. So wherever you are on that caregiving
continuum, if you haven’t already done so, please meet with an eldercare
attorney and financial advisor, discuss long-term care options with your loved
one, educate yourself about the stages of AD, join a good support group, check
out some websites maintained by other AD caregivers, and take whatever trips
you had planned to take with your loved one sooner rather than later.
This concludes
my prepared remarks, but I am happy to answer any questions you may have. Hang in
there, please. Thank you.
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