Alzheimer’s Kids Can Join Support Groups Too

ALZHEIMER’S, YOU AND YOUR WELL-BEING

Sometimes the way to get a clean look at something is to see it in the rear-view mirror.

It is two-and-a-half years since my Mother’s Alzheimer’s journey reached its end.  At the oddest moment it is like a cog spins and a gumball rolls through the chute and spits out another lesson I wish I had learned during those crazybusyjampackedeverchanging Alzheimer’s years.  

In a recent conversation with a friend, I mentioned that my Dad’s Alzheimer’s Support Group had been a terrific resource to him during Mom’s illness.  It became a place of acceptance and a place of honesty for him.  My friend asked in response, if I had attended a Support Group during my Mother’s Alzheimer’s also. 

 

Only once did the possibility that I actually could join a Support Group cross my mind. It was when Mom was in Hospice.  That day I felt like I had been inside the dryer on an extra long cycle, spun and flipped again and again. My nerves jangled from the incoming news from the mountains.  I reached out to a friend for a support group recommendation.  She shared the name and address of her group, and mentioned that they met monthly.  This month’s meeting had been the night before, so I marked next month on the calendar. 

Within a week, Mom’s journey reached her final destination in heaven.

So with the clarity of hindsight, I now encourage all Alzheimer’s Kids – those serving as the primary Caregiver, as well as those who are in touch with their Caregiver daily, weekly, monthly or quarterly –  to find an Alzheimer’s Support Group and join.  To make it their Alzheimer’s Support Group a priority.  

Why?  Because the people at the Alzheimer’s Support Group are their people now.  These people will understand where they are, and support them where they are going.

Today I’m seeing Alzheimer’s Support groups in the rear-view mirror, from many miles down the road.  From this vantage point, it looks like a candle that may have made my trip brighter, warmer, and more peaceful.

My cautionary tale about self-care

ALZHEIMER’S, YOU AND YOUR HEALTH


“How long has it been since I’ve seen you Ms. Ivey?” my Neurosurgeon asks.

“Three years,” I reply.

“And what brings you here today?”

“My sciatica has, uh, encouraged me to reconsider your recommendation for spinal surgery.”

“But first you had to tough it out on your own for three years?” he asks.  

“Now is a more reasonable time in my life to consider surgery.”

I try to remember what things were like three years ago.

Back then, Mom attended the Adult Day Program three days a week. Mom cried when she was sad, and cried when she was happy. Mom shadowed Dad during the day, sun-downed at dinner time and wandered at night.

Back then,   Dad was burning out.   Dad did all the shopping, prepared all meals, selected Mom’s outfits each day, and assisted her with bathing and brushing her teeth.  Dad did the laundry, cleaned the house, maintained the yard, and more. Dad had accidentally lost fifty pounds since the year before, misplacing it as he scurried from event to event.  Dad’s doctor wanted Mom to attend the Adult Day Program five days a week in order to give Dad a break from care giving.

Back then I had one year to go to my fiftieth birthday, and had yet to find a graceful way to welcome it. Each misplaced pen, each forgotten to-do I interpreted as the prelude to my own imagined Alzheimer’s.  I tried one therapy after another seeking relief for my back, as I received alarmed calls from Dad reporting Mom’s fainting spells, missing wedding ring, misplaced glasses and other daily adventures.

The three years since have been a blur of grief, loss, survival and sciatic pain.
 
“Well, let’s hope that there is still something we can do to relieve the nerve now.”

I say a prayer that there is.  I add, “Lord, thy will be done.”

Are you good at setting boundaries?  How do you balance your self-care with the care of your Alzheimer’s Loved One?  Which is easier for you? Which requires more effort?  How can you balance the two and be at peace about your choices