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Mom's Thanksgiving Gift

 

 

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.

This 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.

 Be encouraged!

~Sharon

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