No one should face Alzheimer’s or dementia alone. And if you’re caring for a loved one with the disease, you don’t have to. There is a portable support group within the 101 stories of “Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.” This collection— a collaboration with the Alzheimer’s Association®— offers helpful advice, expert tips, and emotional support for families and caregivers of those living with Alzheimer’s. Here are five tips from other caregivers who have been there, done that.
1. Join them in their world.
When Doris Leddy’s mother said she was an Air Force fighter pilot and was going to receive the Medal of Honor, Doris went along with it. Doris had learned from a few Alzheimer’s caregiver seminars not to question her mother’s imagination, which made it easier for her “to just listen and accept it,” she said. Instead of arguing, Doris and her family took her mom out for a special dinner and presented her with a Medal of Honor and certificate.
“Mom was so surprised and so happy that she got up and kissed every single person in that restaurant,” Doris wrote. Now that her mom’s Alzheimer’s has progressed, Doris is grateful for that happy memory.
2. Join a support group.
Without the friends Samantha Ducloux Waltz made through support groups, she’s sure her journey with her husband and his Alzheimer’s would be much more difficult.
“As my husband Ray’s confusion and anxiety increased, the road sometimes got so bumpy I felt I couldn’t navigate it without these people,” she wrote.
Each of her fellow caregiving friends inspired her through their insightful questions, patience and kindness. Samantha got an intellectual boost because of Erika, started meditating because of Marilyn, practiced gratitude more because of Milt.
“I could make this Alzheimer’s journey,” Samantha wrote, “because I had the example and support of these wonderful friends.”
3. Be creative (with your coping strategies).
As his wife’s dementia worsened, Fred Kinsinger created workarounds. When she lost the ability to read, he’d read the menu to her and show her the pictures that he carried with him of some food items. When numbers lost their meaning and clocks became confusing, Fred created a special clock—he removed the second and minute hands from a battery-operated wall clock, leaving just the hour hand. “Now I can put a piece of tape at the location the hand will be when it is dinnertime or bedtime, and she can check it occasionally to see that the hour hand is approaching the designated time,” he writes. “Who would have thought that building a one-handed clock could be yet another way to tell my wife ‘I love you.’”
4. Don’t be afraid to take the next step.
When Linda O’Connell had to repeatedly explain her mother’s recent death to her stepfather, she knew his dementia was worsening. And when she saw his dinner of peanut butter on crackers and a handful of M&Ms, she knew Pops could no longer take care of himself. Linda and her stepbrother agreed Pops needed more attention and care than they could provide. So they made the difficult decision to move Pops into a nearby care facility, knowing it was in his best interest. Once there, he flourished!
“With better nutrition, hydration, and mental stimulation Pops stays awake longer. He becomes more sociable,” Linda wrote. “The best any of us can do with loved ones who have dementia is to comfort and nurture them through all the stages… And we must take each day one moment at a time.”
5. Use humor.
Linda Rose Etter’s mother was suffering from dementia and wasting away, but she refused to eat. Even when Linda prepared the one food her mom still wanted—a baked potato with butter and cheese—she refused it. So Linda took a different route: humor. She made the potato “talk,” and used a different voice for Mr. Potato, who encouraged her mom to eat him. That got her mom’s attention. But she still refused until the potato “said” it would cry if Linda’s mom didn’t eat it. At this, her mom cracked a smile, looked at her daughter and said, ‘“Tell him I’ll eat him!’ And she did!” Linda writes. “Even with dementia she knew there was something funny about a talking potato.”
Based on “Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias” by Amy Newmark and Angela Timashenka Geiger.