Guilt. Gratitude. Grace.
Long distance care giving is not easy. Many days are filled with guilt of not being
there to help in the moment of a mini-crisis, especially the first days, weeks,
months of diagnosis. And especially when
the disease progresses in a heartbeat.
My guilt recently has begged the question ‘should I move
back home? I should share the load.’ Through many, many conversations with my
sister, I have realized that the answer for me is no, that is not what mom
would want. Plus I am the one who wears
my heart on my sleeve and I would be an emotional mess, not what mom nor anyone
else needs.
My sister and I have become the dream team mom needs. She does on the ground trouble shooting and I
tackle the research we may need in the moment.
We work in tandem, fighting off the bad guys, protecting the demented
lady and finding laughter and ice cream along the way J
Any advice that I have to give is surround yourself with
your tribe. Those ones who will take
that late night call, take you to coffee just because, play Words With
Friends. And especially the ones who
make you laugh. Belly laughs are the
best.
Twitter is my resource for caregiving tips and Maria
Shriver’s website has incredible blogs.
Alzheimer’s and front-temporal dementia is overwhelming and puts me into
Exhaustion (see previous post).
And not being in the thick of the disease gives me a
different perspective. Perspective that has given me the gift of gratitude. Who would think I would have gratitude for
dementia?? Dementia has taught me deep
gratitude for laughter, for the voice on the other end of the phone, for the
moments of clarity, long-ago memories and love.
Alzheimer’s and front-temporal dementia suck. There’s no other way to put it. Just sucks.
But somehow, someway, grace sneaks in.
That definition of grace – simple elegance or refinement of
movement. The rich love, the silly giddiness
of life; the respect and admiration of courage during dark and troubling
times. Mom has led Voyageur and myself
through the crazy maze of dementia, ever reminding us that life is the journey.