Family Caregivers are the Heart of Alzheimer's Care
According to the Alzheimer’s Association, in 2015 nearly 16 million family and other unpaid caregivers for people with Alzheimer’s disease and other dementias provided an estimated 18.1 billion hours of unpaid care, a contribution to the nation valued at $221.3 billion. This is with caregiving being valued at only $12.25 per hour. Similar statistics are posted by the International Alliance of Carer Organizations, which tracks caregiving in countries around the world.
These statistics should make it glaringly obvious that family caregivers are indispensable to our nation as well as to the rest of the world. Without this so-called free care, global health systems would be in far worse trouble than they currently are.
I am one of that army of caregivers. Over the span of two decades I have provided primary care for a total of seven elders, four of whom had dementia of different types. Therefore, I know intimately the toll that years of caregiving for someone with dementia can take.
Below, three other family caregivers give us a peek into their lives as care providers for someone who lives with dementia:
Diapers, Depends, and caregiving - Jaynee Sasso, Virginia, U.S.
Caring for my 80-something mother-in-law, who had a number of health challenges including Alzheimer’s, with a toddler on my hip and a little one on the way, forced me to figure out pretty quickly how to effectively manage my role as a caregiver along with my other responsibilities.
My goal was never to be the “best” caregiver but an equally good mom, wife, and working professional.
Therefore, I had to acknowledge I couldn’t do it alone and develop the understanding that I didn’t need to be martyr to prove my love for others. Being the best me was enough!
RED ALERT! Linda Derrick – Michigan, U.S.
Denial and excuses. There was the time Mom drove 15 miles past the exit...and across the state line...again. But, she was just distracted.
And that time it took her four hours to get home from my brother’s (normally 45 minutes) and she was driving “up and down” US 23 trying to find I-94? I was just over-reacting. Traffic was really heavy and she couldn’t get to the exit.
Then, forgetting eggs were boiling on the stove till she heard popping sounds coming from the kitchen? She had sat down to watch TV and got involved in the show. It could happen to anyone.
Then came a time of No More Excuses. It was July 4, 2002. Mom said, “Sometimes I don’t remember to take my pills.”
_Red Alert! All the denials and excuses became just that. It was time to DO something. I contacted the Alzheimer’s Association, got information, and went with Mom to her doctor. It was the first time in my life I hated being right. _
I miss my mama today - Sandy Foster, British Columbia, Canada
I miss my mama today.
She is so different now... she seems more frail in a way…
I am sad, and I feel so isolated.
There are going to be so many changes in the next few months... I hate change, and if there is one thing this disease teaches you, it's that change is an inevitable part of life... that you have little control over what happens in life.. .only how you respond to it.
**Sometimes it feels as if I am the last person to learn this lesson... I still have not learned it. I think I'm tired of the teacher - Alzheimer's. **
I think I'd like a break from learning any lessons for awhile.
I'm bogged down with Mom’s personal care, purchasing expensive products that may or may not help, and adapting our lives so we have the means to do everything needed...
And new people all the time... you get used to the ones that come... get attached, then they go and you never see them again... it's exhausting.
Just too tired to rise above it right now.
What I really need is sleep.
Sleep, and a tight hug or two... and a loving voice.
Someone to take care of me... just for a little while.
Some caregivers have questioned whether, in the end, the person with the dementia or the caregiver has suffered the most. The answer is that everyone involved with the family disease of dementia suffers far more than people who don't know the intimate details can ever envision.Re-read what Sandy wrote. She voices what many caregivers feel from time to time. We long for someone to take care of us — just for a little while. How can you help? Ask a family caregiver what you can do to help him or her in some simple way. Your offer, even if it's a simple cold meal brought to their door, will be appreciated more than you know.
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Carol Bradley Bursack is a veteran family caregiver having spent over two decades caring for a total of seven elders. She is a longtime newspaper columnist and the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” as well as a contributor to several additional books on caregiving and dementia. Her websites can be accessed at www.mindingourelders.com. Follow Carol on Twitter @mindingourelderand on FacebookMinding Our Elders.