The phone always rings between 10am and 2pm, during
standard business hours when I am sitting, exposed, in my cubicle at work. I
stare down at the number on my phone and recognize it. I’ve managed to memorize
the number, but have refused to actually save it in my phone contacts because
it’s permanence and presence looms over me enough. Subconsciously, I suppose, I
don’t want the Memory Care number to have an established place in my daily life
– or at least don’t want to give them the thirty extra seconds of my day it
would take to save down the contact information in my phone.
“The phone number is burnt into my memory, that’s space
enough!” I think, as I quickly reach over and answer the call.
These calls from Mom’s assisted living facility, and how
they are an unexpectedly expectant part of a quotidian workday, are the best
encapsulation of what the past year of transition has been like. In the fall of
2018, almost immediately after last year’s Alzheimer’s Walk, my boys, Charlie,
and I packed up our lives and moved to Washington DC. I’d applied for a new
position within my organization, one that put me back on the trajectory of
international work that I was most interested in. When I was offered the role I
was told I would need to relocate to DC. Charlie and I took stock of where we
were and our family’s collective goals, and decided the time was ripe for
change.
While we were excited about the change, aspects of the move was difficult and painful; we’d finally built up a rich community in
Lexington, even in spite of caregiving demands and time constraints. And I was
heartbroken to be away from Mom and the rest of my family, stripped of the
flexibility to breeze in and out for a quick visit or two each week. But I took
heart in knowing that it was the right move for my husband and children, and
that it personally meant more career fulfillment and greater opportunities in
the future. I knew that if Mom were well and herself, she would be encouraging
me to do it – cheering me on.
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| {photo from a visit with Mom in Spring 2019} |
A remote move, especially with small children, is no
small feat. But Charlie and I were pleasantly surprised with how smoothly it
went. We had friends on both ends of the move that jumped in to load, drive,
and unload the truck. When we landed in DC we were thrilled to find many close
friends from across seasons already living in town. Community and routine came
relatively naturally.
The adjustment into a role as remote caregiver has been
somewhat bumpier, but with a caveat that the logistics and assurance that mom
receives excellent care has been seamless. It came as no surprise that my
family in Lexington and my Mom’s legion of friends continued to help day-in and
day-out. They visited (and still do) faithfully. They call and text with
occasional updates, and are always willing to step up and help if issues arise.
The bigger challenge on my end has been trying to juggle
how to maintain the headspace and attention to my Mom’s care when I am so
distant and managing so much as I adopt to my new life here. The calls (as
described above) from her Memory Care unit are always helpful – updating me
on a small incident (where Mom might have fallen, or started exhibiting an
unseen behavior) or asking me to secure more items of hygiene care. However, in
spite of their helpfulness I often feel caught off guard by them. They can come
at any point in my workday, and I never know if a call is for a smaller need,
like buying a few new items for Mom, or something much bigger – like a fall or
health issue that has arisen that requires immediate attention. When the bigger
issues come up, it unravels my mind and interrupts my day with an unexpected
force. I find myself much more quickly overwhelmed by the tasks that come, and
much less steadfast and level-headed than I was in Lexington.
An additional challenge is trying to get a pulse on how
Mom is doing. I speak regularly with the nurses, and family and friends who are
visiting. While everyone gives me helpful, detailed accounts of what they’ve
seen and observed of Mom – so often anecdotes conflict. One friend who hasn’t
seem Mom in a while will report about how quickly she’s deteriorating, in the
next moment a staff member at Legacy will give me a readout of a great day that
she’s had, and a week later I’m speaking with her doctor about a newly
emerging, problematic health matter/behavior. What’s most daunting is that no
one’s account is untrue or even over-dramatized or incorrect. The nature
of Mom’s illness and the rapid progression we’ve observed over the past year
often translates to the fact that Mom’s well-being and reality can shift
day-to-day, hour to hour, even between moments. It feels daunting to monitor
from afar, and I remind myself it would still be nearly as challenging if I were
checking in on her myself. But this still doesn’t abate the concern I feel from
the distance – from the lack of ability to be there and see firsthand.
 |
| {from a visit in fall of 2018} |
Now that I am in DC, I find myself constantly thinking of
Mom. I walk to and from work daily, and hardly a day goes by where I don’t feel
a pang of sadness -- wishing that I could call up my Mom and chat about
everything and nothing as I walk home from work. When I post pictures of my
boys to our family’s shared photo album, or catch a funny story I want to
share, I daydream of telling my Mom about it – of saving it up for her next
visit, or sending a quick text her way. I think of all the questions I might
have asked her about her years as an early parent as I nurse my newborn late at
night:
Was I a good sleeper?
What about Corey?
Remind me – what was
your labor and delivery like with each of us?
Were you ever unsure and afraid?
What was your greatest joy in your early days of parenting?
All of these questions filled the vacant spaces of my day
in Lexington, but they were far fewer when I was caring for Mom due to lack of
time, and due to the fact that I pushed them aside as a means to try and
cherish and recognize that my Mom was still
with me and still in front of me. The
reality of the move and the lack of her daily presence has given me permission
to begin to accept her gradual departure – and to sit with these things, often
in silence and in loneliness. In a city where much is new and exciting, and
where we have many good friends, I didn’t expect for the specter of the past
years and my grief to loom so large.
So as we prepare to walk this year, we walk in part for
caregivers – for those near, and for those who may be further then we like, battling unanticipated feelings of grief and trying to balance responsiveness for the immediacy of needs with the regular demands of their daily lives. I
acknowledge that the distance doesn’t lessen the ferocity of love for your
family member, and it doesn’t diminish the passion and intent you put into
making sure that your loved one with Alzheimer’s is well cared for.
I am glad that I will have the gift of time to be in my Kentucky home
and present – to have my Mom meet her granddaughter, and then to head downtown,
yet again, and walk with the hope that our money raised will provide help and
comfort to other caregivers – those both near and far from their loved ones.
To sign up to walk or donate to our team, click here: https://act.alz.org/site/TR?pg=personal&px=6905271&fr_id=12589
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| {from a visit early this summer} |
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