Hello there fellow caregivers (care partners),
I know it has been a long time, since I have written to
you in this blog I started oh so many years ago; this blog designed to fight against the dementia
that steals my beautiful mom bit by bit while leaving her body intact. Sorry for my absence, it feels kind of good to be back.
Seven years ago, when I began this blog back in 2011, I
couldn’t stop writing, sharing resources, reading everything I could and
passing it along. I was compelled to begin this blog. It wasn’t
a hobby – it was a compulsion. (My husband described it once as that time I was trying to save the whole world). I guess it was my way of processing, of grieving
and of trying to find my way back to the center again and make a little sense
out of the tragedy unfolding. I also
wanted to help people so they have to go through some of the difficulties we
experienced as a family – mostly just because we didn’t know what to do or
where to find help.
It is hard to imagine
that right about this time seven years ago, my mother began unraveling. I am
sorry that none of us knew what was happening. I am sorry that none of us knew
what to do.
But, then one day a little more than a year ago, it became more and more difficult to write! Many times over the
last year I sat down at the computer with an idea, a concept that would be
worth sharing and I couldn’t bring myself to type it. I just felt so tired. It was as if I had lost my ability
to form the words to describe what I was feeling.
Recently however, it occurred to me that I began losing my voice
around the same time that my mother began to lose her ability to communicate
verbally with me. . . perhaps without her voice in my head – there were no words to
write…but today for the first time in a long time, I feel like writing. So, here I am.
So, I guess if I was
describe what I feel and where I am at as my mother’s caregiver today is:
The number one go-to-emotion I wrestle with on a regular basis is GUILT. I feel guilty
most of the time. I feel guilty for not making enough time for my mom. As a
busy mother and grandmother who works full time, I do not have the time to
spend or the capacity to do the fun and creative things with Mom that she
deserves. I hold her hand, I try to engage the person within, but I am usually
left with the overwhelming sense that I do not ever do "enough”. Sound
familiar? To make matters worse, this guilt drains our motivation to visit even more, making it harder than ever.
Thanksgiving weekend (for example) despite my children and family all being
home, in the happy chaos of hosting it all, we never got to visit my mother. On
Monday, after delivering family members to their train and tidying it all up, I
ended the day on my couch in track pants the thought resonating in the back of
my mind, "Mom didn’t get a Thanksgiving this year” followed by "I suck as a
daughter.” This is the challenge common to all caregivers. We didn’t want this
disease to slowly chip away and dissolve the personalities of those we love. We
never wanted them to have to live alone, apart from family in a long term care
home. We feel sad because it is sad.
Yet, guilt is something we need to manage and to wrap our heads around so
it doesn’t take us under. Even after seven years, I am working on it.
My second emotion would be CONCERN. This one isn’t too bad. It has watered itself down from
panic, exhaustion, worry and regret. Although I admit I still wrestle with
guilt, I have the great contentment of knowing mom lives in a long term care
home that is intimate and loving, a place where her care is good, her food is
good and people who know what she likes provide her activities to do. I know she is safe and even in her diminished
state, she is content.
So, what am I concerned about? Firstly, the
most obvious one – that someday she will die. What will that be like? Will it
be soon or will it be years from now? Will it be difficult or simple? Will I be
there when it happens? (And the list goes on.) Secondly, I become concerned when she is sick or
distressed – whether it is from a fall, a seizure (a newer development that occurs
from time to time), when she develops and illness or develops a delirium, when
she loses weight, when she stopped talking, walking and feeding herself or just seems sad and distant. These things used to weigh me down, keep me awake at night – now they are just the
background noise of my life. We cross these bridges as they come. This is our
life now. It is what we do and I am "ok” with it. I guess that is what being my
mother’s caregiver really is all about.
While It might seem a little contrived, my final
key emotion is definitely LOVE. I
miss the woman my mother was. I miss being mothered and "cared for” and I so totally adore her! I love this woman I get to hold hands with and on a good day even share a laugh
with. I am grateful that at times I
still get to see a glimpse of the mother and person she used to be – through the sparkle in her eye, the tap of her foot, the squeeze of her
hand or her mischievous grin.
Even when she forgets it
all, I have never forgotten her and I never will. Maybe this is the best Thanksgiving gift I
have to offer mom this year.