Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review)

ALZHEIMER’S, YOU AND YOUR SUPPORT

IMPROVEMENT OPPORTUNITY: BUILDING TRUST

My Dad considered Mom’s Alzheimer’s care to be his duty. To Dad’s credit, he took full command of Mom’s care and served her with honor.

I knew Dad would eventually need to trust others to help him. One countermeasure I tested to build this trust was to encourage Dad to call me for help.

HOW IT WORKED

Back then, Dad was yet to own a smartphone or a computer.  He also had yet to understand how these tools could make his life easier. I invited Dad to call me to ask for help getting things he needed.  He could call when he needed the phone number of the local shop that sharpened lawn mower blades. He could call when he was yet to have the time to go from store to store to shop for replacement vacuum cleaner bags only Mom knew where to find. I’d do the research and call Dad back, always careful to swap the information he requested for updates on Mom, her behaviors and her well-being.

As the strain of caregiving increased, and Dad’s trust that I was there for him grew, he began to call me for other kinds of support.  Dad’s calls took on a new tone. Mom had misplaced her engagement ring that morning and Dad had spent three hours on the hunt.  Mom had wandered away in the middle of cleaning the bathroom sink and now Dad had to finish his chores and hers as well. Dad was exasperated and needed a friendly ear.

As Mom’s Alzheimer’s progressed, and Dad’s trust in me to support him grew, so grew the complexity of the support issues.  How can Mom get an accurate eyeglass prescription when she always tells the Optometrist her vision is fine? Is cataract surgery a good idea for Mom considering that she has Alzheimer’s?

WHAT WENT WELL (Plus)

  • Phone support kept parent/adult-child lines of communication open.
  • Frequent calls kept me in the loop on daily events in my parent’s lives.
  • Gathered valuable intelligence during daily chats that would have been missed with a once-a-week call.
  • Built Dad’s trust that help could be found to meet his caregiving needs.
  • Built Dad’s trust that I could help from 2 hours away.
  • Became an ear-witness (we had yet to have video chat) to Dad’s need for more sleep.
  • Became an ear-witness to Dad’s need for more private time.
  • Kept up-to-date on new evidence that the Alzheimer’s was progressing.

WHAT I’D CHANGE IF I COULD DO IT OVER (Delta)

  • I’d set firm boundaries around the days and times that I could welcome Dad’s calls.
  • I’d provide Dad an emergency plan to follow when he needed support on my off hours. (For example, the phone numbers for The Alzheimer’s Association’s National 24 x 7 hotline (1-800-273-3900); Dad’s local Area Agency on Aging; Dad’s local Department of Social Services.)
  • I’d keep a log of call date / time / topic.
    • Use to identify our knowledge gaps
    • Use to spot trends in calls
    • Use to identify when to bring in outside expertise
  • I’d care for my own emotional and physical health by involving others sooner.

Your friend on the journey,

Barbara

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