Nearly every day, even when she has to wear snowshoes, my friend Ann walks the beach near her home in Maine, where she shares her life with the man she loves. He has early Alzheimer’s.
The littoral* zone, she tells me, is the area of the shore where the tide comes in and out. The upper part is dry and solid at low tide; at high tide, it’s all either underwater or soft and squishy from the lapping waves.
In the littoral zone you have one foot on solid ground, the other on sinking sand. You’re always off balance.
As a kid in Flagler Beach, Florida, I loved to play tag with the waves, chasing a receding one out as far as I dared, then running backward as the next came in. As my rolled-up jeans attested, I always lost the race. It was fun.
Though it may bring occasional moments of joy, caregiving is not “fun,” especially where Alzheimer’s is present. Like the tides, the only consistent rule is change. You never step into the same water twice. As it deepens, each wave washes in a new challenge:
- Unexpected mood swings
- Explosive rage
- Deteriorating personal hygiene
- Loss of bowel control
- A string of “forbidden words” erupting uncontrollably without apparent reason
One learns to patiently field repeated questions, to find misplaced keys and wallets, to calm panic and allay paranoid suspicions. But that may not be the hardest part.
Oddly enough, a caregiver may have to endure added stress if the patient “presents well.” Because he seems normal in social situations, family members who are rarely present may minimize what you tell them or second-guess the quality of your care. I know a case where a son moved into his parents’ home to care for them. Instead of being grateful, his sister was furious because he wasn’t paying rent. This was true even though he provided services worth several thousand dollars a month on the open market.
Here’s my advice to caregivers: Find your own littoral zone, symbolic if you don’t live at the shore. It might be a quiet corner of the porch or yard while the loved one naps – a place of actual or emotional solitude where you can pray, meditate, or journal. Move, even if it’s just running up and down stairs. Practice gratitude. Listen to music you love. Breathe!
And here’s my plea to family members: Before you assume a family caregiver is taking advantage, check out
- What services they’re providing;
- The dollar value of those services on the open market;
- What’s it costing the caregiver in terms of added stress and the value of lost career opportunities; and,
- Whether your parent or loved one is happiest in their own home instead of an institution.
Then show your support. If something is awry, offer to help fix it. Take on a task such as bill-paying or doctors’ visits. Call your loved one frequently. And volunteer to take a turn, giving the caregiver a respite.
After that maybe you’ll decide your sibling’s “free rent” should come with a cash bonus!
Beyond Dispute Associates
© Carolyn Parr and Beyond Dispute Associates, 2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Carolyn Parr and Beyond Dispute Associates with appropriate and specific direction to the original content.