ALS, Cleft, and Alzheimers caregiving.
Of late, I’ve begun to think of some of the issues of caregiving because my sister-in-law was recently diagnosed with ALS, Lou Gehrig’s disease. This disorder causes muscle weakness and atrophy throughout the body due to the degeneration of motor neurons. Her partner has already begun to perform the classic tasks whereby a caregiver:
- Takes care of household chores, meals, or bills for someone who cannot do these things alone
- Manages medications and/or talks to doctors and nurses on someone’s behalf.
- Helps bathe or dress someone who is frail or disabled.
That this is a heavy burden is illustrated by perhaps the best known ALS sufferer at the moment, Stephen Hawking. For all his brilliance, Hawking has parted ways with various partners, caregivers, and partner/caregivers during the long course of his illness.
Price paid by my mother.
I noted some of my mother’s own caregiving in my prior blog. What price did she pay for caring for my special needs as a cleft lip kid? For starters, the lack of time for herself in the early days of her growing family meant she probably wasn’t able to develop various interests or hobbies. Her sense of self—independent of her children–may’ve been lacking. This issue is explored, as well as other caregiver issues–in my book, Cleft Heart. It’s time now to continue Jane Brody’s important story about caregiver Paul Divinigracia, featured in a New York Times article “Caring for the Alzheimers caregiver.“
Heroic caregivers and some dangers and pitfalls.
“According to the data from Stanford University and the Alzheimer’s Association, more than 15 million people provide unpaid care for family members or friends with Alzheimer’s disease or other forms of dementia. The strain of the task has been shown in many studies to increase the risk of a variety of illnesses, and even death.
Mr. Divinigracia loves to travel, and he’s discovered that taking trips stimulates his wife in a positive way. “Her attention span increases, and information is better retained from the new places we visit,” he said. On a recent drive from Fremont, Calif., where they live, to Seattle for a family event, they passed through beautiful mountains north of San Francisco.
“She just loved that and can recall it, even though she can’t remember what I told her two minutes ago,” he said. To maximize quality time together in whatever time they have left, he’s planned trips to Hawaii in April and Europe in September.
Sometimes, though, returning to an old activity can be stimulating and fun. In one of Dr. London’s stories, a caregiving wife gets her husband, who has serious dementia, to again enjoy golf, his former passion, by saying she wants to play. Once at the driving range with club in hand, he suddenly remembered what to do and sent the ball flying.
The message: “Once you get him started, he may still know how to do something he could do years before. What a thrill!” Dr. London wrote.
Likewise, there may be ways to awaken pleasant memories through new experiences. Dr. London tells the story of a woman who picked a sprig of rosemary during a walk around a lake. The smell reminded her husband of how much he liked her rosemary chicken, and he said so in the first complete sentence he’d spoken in months.
One of the most common, distressing challenges faced by caregivers occurs when dementia patients become agitated or physically or verbally abusive, situations that are emotionally exhausting and sometimes dangerous for patients and caregivers alike.
Laura N. Gitlin, a professor at the Johns Hopkins School of Nursing, works with a team of occupational therapists to find ways to cope with such situations without drugs. They prescribe activities that patients and caregivers can do together tailored to the patients’ abilities, needs and interests. The result is patients who are calmer, safer and more engaged, and caregivers who are less stressed. Still, there are times when even the most astute and clever caregiver fails to overcome a challenge, particularly when an Alzheimer’s patient becomes violent. When one woman’s husband seemed possessed by demons, screaming curses and menacing her with a knife, Dr. London wrote, she finally realized that she could no longer care for him safely at home. Reluctantly, she had to place him in a home so that both of them could be safe.
From conversations with others and participation in a semimonthly Alzheimer’s Association support group, Mr. Divinigracia knows that the worst is yet to come. He continues to learn effective ways to cope with the challenges that arise, and how to take them in stride.
Still, Dr. London said, “caregivers are often the casualties, the hidden victims, of Alzheimer’s disease.
“No one sees the sacrifices they make,” she said.
It is vital for caregivers to take good care of themselves, she added, by exercising, eating and sleeping properly, and getting respite care when needed.
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