After her 72-year-old husband was diagnosed with Alzheimer’s disease in 1998, Judith Fox became a caregiver in addition to being a wife. At age 56, she joined the ranks of the estimated 45 million Americans who provide care to a sick spouse, elderly parent or other family member or friend.
The needs of a person with Alzheimer’s are among the most challenging to meet of all chronic conditions. Affecting nearly half of all Americans over age 85, the devastating neurodegenerative disease typically leads to memory loss, confusion, apathy, personality changes and psychiatric disturbances, such as hallucinations.
Over time, Fox not only took over more and more of the household duties, but also found herself trying to anticipate the smallest of day-to-day details that could possibly affect her husband’s well-being (“Will he trip on the lamp cord?”).
After more than 10 years, Fox made the difficult decision to move her husband to the dementia unit in a full-care facility, where she now visits him almost every day. Fox worked hard to make the transition relatively easy, and her husband adjusted surprisingly well to the move.
Throughout her caregiving journey, Fox gradually integrated her work as a fine art photographer and writer with the demands of tending to the needs of her husband.
Her advice to anyone caring for a person with Alzheimer’s or any other form of dementia…
Keep him/her engaged. Ed had been a surgeon, a pilot and a university president. All people with dementia crave mental stimulation—even while their mental abilities are declining. Given Ed’s background, this was particularly important.
At the facility where he now lives, Ed attends lectures given by a college professor who volunteers his time once a week…I also make sure that Ed has DVDs on topics that might interest him, such as documentaries about the space program. He can watch those for hours but won’t remember that he had previously seen them. They’re “new” each time he views them.
Lighten up when you can. Even as the disease progresses, most people with Alzheimer’s keep their sense of humor. Find things to laugh about. For Ed, humor is a welcome distraction that allows him to feel normal again.
Live in the moment. It’s all that you have when you live with someone with any form of dementia. Your loved one can sound almost normal one minute—but completely out of it the next. Don’t assume that the bad will stay bad or that the good is a harbinger of better things ahead. Just take the moments as they are.
Enter their world. Many Alzheimer’s patients experience hallucinations, in which they hear or see things that aren’t there. Sometimes the hallucinations are frightening, but they can also be very pleasant.
Ed and I spent lovely hours attending parties, discussing what’s on the buffet table and gossiping about the people in the room. None of it was real—but he experienced it all as though it were. I was there with him, and we had a great time!
Touch. Ed and I hold hands all the time. That means a lot to both of us. When we touch, I’m able to look beyond the disease and remember how much of Ed’s essence is still there. When he’s anxious or frightened, just touching him will often make him calmer.
Encourage friendships. Dementia, more than most illnesses, fosters alienation.
Some people with the disease avoid gatherings because they’re embarrassed that their minds are slipping and that they may say something inappropriate. Ed and I have stayed in touch with friends long after the time when he was fully able to follow the conversations—or even remember who the other people were. But he has enjoyed those moments.
Love a pet. I recommend this for everyone with Alzheimer’s or any other form of dementia. Dogs and cats enjoy cuddling, and they give unconditional love. There’s never the fear that they’ll judge you or let you down. Ed and I both love our cat, Honey, but she and Ed have formed a special bond because of his illness.
