Caring for someone else on a long-term basis is both a powerfully rewarding and an emotionally draining task. I know; like many other people, I’ve been there.
If you are a friend or family member, you do it out of love and caring for someone who deserves your support. And typically you do a better job because you have a relationship with and a vested interest in the person in your care.
But it comes at a price, doesn’t it?
My exhaustive experience was on behalf of my mom. Typically, but not exclusively, it is the “designated daughters” who shoulder the responsibility of recognizing, arranging and providing services for their elder family member, be it a parent, aunt, uncle, etc.
Many men, my amazing husband being one of them, can and have juggled the many balls that it takes to help out someone else. But let’s face it gentlemen, typically it is us ladies who step up and into the field of marathon caregiving.
And the First Caregiving Academy Award goes to…Elizabeth Ward, my mom!
On a limited basis, my mom cared for her mom during my grandmother’s lengthy battle with cancer. Of course she provided exquisite, maternal care to her “babies” through their bouts with the flu, sore throats, chicken pox, mumps, accidents, etc.
But her greatest caregiver role was on behalf of my dad. Mom provided selfless, unwavering care during the nine-years of steady decline after my dad’s stroke.
“Death by Inches” was how she referred to his demise, the slow but certain loss of dignity, self-care skills, mobility, and especially in his case, judgment and behavior.
Day after week after month, Dad’s functional abilities gradually faded into oblivion, never to be regained. I admired Mom for her selfless and excellent care of and for him. But it came at a price: her mental health.
I knew Mom was on the cusp of making a very difficult decision to move my dad to the nursing home wing. She and I had talked about it at length during a recent visit.
It was becoming nearly physically impossible for her to transfer him without help. He was mostly incontinent, and she had noticed that he was having considerably more difficulties with memory and speech. I couldn’t imagine her transferring him alone, especially for showers.
Despite all of the obvious facts, however, I suspected that my mom would not be emotionally able to let go of his care and agree to the nursing home setting. Plus, my dad would vehemently protest being placed there.
But my dad also wasn’t capable of logical thinking any longer. My pre-stroke dad would have hurled himself in front of a bus for my mom; or, in this case, packed his things for the nursing home to save her from the physical and emotional burden of caring for him.
The post-stroke dad, however, was quite different: self-centered, explosive, and difficult. I knew my mom could not endure his profane ridden wrath, his pitiful whining or his protests to stay, for very long.
One or the other of them was going to be dead by the end of the year, I had predicted—either my dad from another stroke or my mom from exhaustion.
Dad passed away Easter Sunday 2004 from stroke complications. Mom passed out from complete exhaustion leaving his funeral arrangements in my hands. She barely recovered when tragedy struck again. Her son, my brother, died December 30, 2004 after loosing his 20-month battle with cancer.
Looking back, I think Mom went into protective shock and never came out.
There were a smattering of memory issues and voids in her thinking not long after Dad and Jerry’s deaths. I chalked it up to stress and if stress was a catalyst for dementia, which Mom was certainly a candidate!
But in retrospect, they were the first indications of what would eventually be diagnosed as Alzheimer’s.
Mom and I lived in Michigan, but we arranged for a small memorial service for Jerry at my cousin Mike’s in Sedona, AZ. I was barely in the door at Mike’s place when he took me aside and whispered, “Aunt Betty thinks she’s at her apartment in Kalamazoo. She asked me this morning where her room was, number 342.”
Even given the unspeakable loss Mom was experiencing from the death of her son, she should have “remembered” that she had flown over three hours from Michigan to Arizona and that his place looked nothing like her apartment.
Over the next few years, there were increasingly more incidents of poor judgment, illogical thinking, driving disasters, checkbook confusion, misplaced items, paranoia, uncharacteristic irritability and flashes of hostility.
And the Second Caregiving Academy Award goes to…Mom’s caregivers at her senior apartment facility Friendship Village in Kalamazoo.
I lived two hours east of Kalamazoo, between Ann Arbor and Detroit, so I didn’t see or experience what the staff at Friendship Village did. These ladies were in the trenches watching out for and intervening in Mom’s behalf.
They validated Mom’s accusations that her brown pants were stolen, or her nail file, or stamps, stamp holder, a section of the newspaper, etc.
They made arrangements to handle Mom’s medications after she accidentally overdosed on and subsequently passed out from her blood pressure medication several times.
They buffered repeated but unwarranted complaints from Mom about ridiculous things: why the mail was late (it was Sunday and there was no mail service), why the box around the fire alarm was a darker color, it didn’t “match” the hallway paint (so it is more noticeable), why people mumble when they speak and so on.
All the while I lived in denial, seeing my mom as more functional than dysfunctional, driving over to take her to lunch, having her at my house for the holidays, happily oblivious to her deteriorating state of mind, until a string of cataclysmic events caused Mom such unadulterated terror and emotional fallout I finally witnessed first hand how mentally compromised she really was.
Mom was moved from Kalamazoo to an assisted living facility within a half hour of my house on July 12, 2010. Her deterioration from Alzheimer’s was swift as she lived almost a year to the day of her move, July 8, 2011.
And the Third Caregiving Academy Award goes to…All Caregivers working with Alzheimer’s patients!
My once kind and patient mother had turned into a sometimes hostile, angry, argumentative and suspicious woman. There were times I didn’t recognize the unfamiliar person occupying her body and certainly not the rants of someone possessed.
She even kicked me in the butt, literally, in front of a room full of people.
My “Hi, Mom” was met with “I have a bone to pick with you!” She was standing in the lobby. Before I knew it, Mom rotated her left hip, leaned onto her left leg, and hurled her right foot into my butt and kicked me.
I felt instant anger but suppressed it. Quietly we walked back to her place. I wanted to drag her back by her hair, but she didn’t have enough. I wanted to put her in a time-out, but she wouldn’t remember why she was there.
I wanted her to get better, but that wasn’t going to happen either.
I should have been impressed that she still maintained the equilibrium skills to pirouette on one leg and wallop me with the other.
Caregiving for individuals with dementia when they are unpredictable, obstinate, abusive and/or uncooperative is challenging and definitely takes its toll.
I had gradually learned and adopted alternative, non-confrontational strategies for dealing with my mom when she demanded that I return her to Friendship Village or refused to change out of her dirty clothes or brush her teeth.
If I waited a few minutes or if I rephrased the request, she usually complied. In that brief amount of time, she had forgotten why she refused.
Deflect and Redirect! It works very well, but it takes inordinate patience and energy. It’s very much like acting.
A really good actor/actress adopts their character, steps into a role unlike themselves. Good caregivers must do the same when facing the challenges of calmly intervening for the safety and care of someone with Alzheimer’s.
There is no Academy Award trophy for the Best Caregivers, but maybe there should be.
To all of you who show up every hour of every working day and patiently do your job well — and on behalf of every daughter, son, grandchild, cousin and friend of the ones you care for — I thank you and award you The Caregiver’s Academy Award. Congratulations!