When Clare
was in early stages of AD, I was her 24/7 caregiver. On her “good days” we continued living pretty
much as we always had. We went out to
eat, saw movies and plays, traveled, socialized with friends, and played word games
that Clare could still enjoy. As Clare
entered moderate AD stages and could no longer be left alone, we didn’t go out as
much, did very limited travel, socialized with only a few friends, and rarely
played word games. Most of our time was
spent watching TV together. Staying home
with Clare became my “comfort zone.”
In 2013, when
Clare’s AD worsened to where I felt I could no longer continue as her 24/7
caregiver, she entered an assisted living residence. Other than visiting with Clare each day, I continued
living alone in my comfort zone, spending most of my time watching TV. I felt both married and widowed at the same
time.
Experiencing
what psychologists call “anticipatory grief,” especially after Clare no longer
knew who I was, I foolishly thought that Clare’s eventual death would not hit
me too hard. But I was very wrong. For 2 years after Clare’s death I continued
to experience considerable sadness, depression, guilt, and anger among other
negative emotions. I just wasn’t ready ...
or motivated ... to move out of my comfort zone and seemed unable to truly find
happiness again.
This past
spring, however, I started taking steps to move out of my comfort zone and move
on with the rest of my life. I wrote
about these steps in Personal Blogs #6-8.
Clare will be in my heart forever, and I still have occasional painful
moments such as when listening to some songs or watching sensitive scenes on TV or in a
movie. But, despite some of those teary moments, I
have found happiness again ... my “new normal.”
Writing has
always helped me clarify my thinking. From
the onset of Clare’s illness, writing articles for publication helped me
organize my thoughts so I could ask doctors better questions, suggest ways to
more effectively treat Clare, and try to improve overall communication with
doctors. I wrote about these issues
while trying to make life easier for Clare, and for me ... but I also hoped
that my articles might be helpful to other AD caregivers.
Similarly,
when Clare entered an assistant living residence, psychiatric hospital, and finally into a nursing home I
wrote about what I observed ... AD patient care, programs, personnel, and communication. I wrote articles to suggest changes to improve
the quality of life for people with AD in such settings. I hoped that articles published in medical
journals would help doctors and long-term care administrators re-think how they
were diagnosing, treating, and caring for people with AD, and how they treated and
communicated with their caregivers.
I wrote
op-ed columns for major newspapers to try to raise public awareness of AD and
highlight the need for more government funding of AD research. And last year I started writing Personal Blog
columns, posted only on this website, describing how I was dealing with life as
an AD widower.
Writing has
always been very cathartic for me. Describing
what Clare was experiencing and how we were feeling helped me cope better during
our AD journey. Writing about my lengthy
bereavement in Personal Blog columns helped me eventually realize that I would
only find happiness again if I forced myself to move out of my comfort zone.
After my 100th
article was published in August, I recognized that to continue moving on I
needed to stop writing about AD. When I
posted Personal Blog #8 in September, I wasn’t sure if I would post additional
blogs in the future. I can now say,
however, that I expect this Personal Blog #9 to be my final posting. Now that I have moved out of my comfort zone
and moved on with the rest of my life, I do not think I will have anything new
to write about that could be helpful to others.
I will continue
to monitor this site so it remains a viable resource for the 1000+ visitors who
come here each month, and I will continue responding to emails from AD
caregivers and doctors. I will also
continue removing spam each month because a few visitors sometimes post comments
about “spiritual healers” whose “magic potions” can cure AD.
Being an AD spouse
caregiver is a role I wish for no one, and life as an AD widow or widower is
not easy. Wherever you are on your AD
journey, please make time to care for yourself. Best wishes for a happy and healthy new year.
