Bill gave very attentive care to his wife, Deborah, who had Alzheimer’s disease. Their son lived a couple of hours away and came to lend a hand every few weeks. Otherwise, Bill did everything himself.
When I suggested he might need some help, Bill looked surprised.
“I want to do this! This is what I’m supposed to do,” he said. “You know, ‘in sickness and in health.’ I’ll only get help if I can’t do it anymore.”
Robert B. Santulli, a psychiatrist who focuses on the Alzheimer’s family, and Kesstan Blandin, a psychologist, both at Dartmouth, write about care partners like Bill in their book, The Emotional Journey of the Alzheimer’s Family (2015). They say that instead of asking, “Is it possible for me to do this all alone?” these devoted partners need to ask, “Is it best for me (and the person with Alzheimer’s) if I do this all alone?” Santulli and Kesstan add, with understatement, “An exhausted or irritated care partner is not in a good frame of mind to care for someone with Alzheimer’s disease.”
Too many Alzheimer’s caregivers manage alone—41 percent have no help from family. Friends seem caught up in their own lives. Caregivers can become more and more isolated.
If that’s your situation, it’s worth swallowing your pride and reaching out to your friends. Many people would be glad to help if they only knew what you needed. Hard as it is to do, if you speak up and say to a friend, “I need someone to sit with my mother while I go to the store,” chances are she (or he) will do it. And because doing something for others makes us feel good, she may even be glad you asked.
However, outsiders are often afraid they won’t know what to say or do with a person diagnosed with Alzheimer’s. You can teach your friend by giving her a chance to be with you and your loved one. She’ll learn from watching you. All three of you will benefit when she becomes more comfortable.
For people with Alzheimer’s, eventually the usual social activities can become too challenging. They still need social interaction, but in a context that doesn’t leave them feeling unable to keep up. A good adult day program can provide what they need.
When my mother and I were living with her Alzheimer’s, both of us benefitted when I took her to an adult day center two days a week. I got a break from caregiving, and in a fail-safe environment she gained a sense of competence. The day center staff could see her remaining strengths—her desire to help others and her sociability—and encouraged them.
Contact with the professional staff of a day program can also help you in other ways. Problems you are stuck on are likely to be problems they have encountered dozens of times, and they’ll be glad to give you some fresh ideas.
But perhaps the most fertile ground for getting new ideas is an Alzheimer’s caregiver support group. When you join a group, you find people who have faced something very much like what you are facing. It can feel like “Home at last!” to spend that first hour with people who really do know what you are going through.
And support groups aren’t all problems and gloom. These are people with whom you can laugh as well as cry about your troubles.
There will come a time when it’s no longer safe to leave your loved one alone. An indicator of that is when you get home and find her (or him) upset and wondering where you have been—even though you left a note to remind her. The danger is that people with memory problems can become anxious when left alone and may leave home to look for their care partner. Or if something happens like a kitchen fire, they may not recognize it as an emergency or know how to respond to it.
The common solutions that allow caregivers a break are, unfortunately, ones people with Alzheimer’s are likely—for good reason—to oppose. Many times they can’t see their own failing abilities, so they are likely to think it’s absurd that you want them to have a “baby sitter” or spend time at a day center.
Both solutions—someone to keep them company or a day program—may feel like a blow to their independence, or an invasion of their privacy. Or they may focus on the cost.
Do listen very carefully to your loved one’s fears and reasons. Let him (or her) know you understand what he’s feeling. Knowing he’s understood can go a long way toward gaining his cooperation.
The truth is, you need to keep him safe so that you won’t worry. If you say, “I love you, and I worry about you when I go out. I need you to do this for me,” you take responsibility for needing help, rather than calling attention to his failings. You preserve his dignity.
If no relative or friend is available to keep your loved one company, you’ll need to hire a companion. Later on, you may need help with his personal care too. (See the list of resources at the end of this blog for ways to find home-help services and for a link to a description of levels of help.)
There are many agencies, and some are excellent. If you are in a support group, ask the facilitator or other members for suggestions based on their experience. And when you call the agency, ask if they have someone particularly good at relating to a person with dementia.
Most agencies have female and male carers, so if you think your husband or father would prefer a man helping him, be sure to ask. I knew one woman who made it clear she preferred a man.
Don’t hesitate to try a few different aides to find one who clicks with your loved one. You might stay home during a new caregiver’s first visit. If things go well, you can leave for a short while on the second visit, making sure your loved one understands you’ll be back soon.
Day programs, home helpers, relatives or friends can all give you a break, which allows you to remember who you are outside of caregiving, to reconnect with friends, go shopping, visit a doctor, attend a support group, do tasks you can more easily do by yourself—or to simply feel free for however short a time.
In addition, time spent away from you broadens your loved one’s social world and leads him into accepting help from someone other than you.
Even with help, caregiving can grind you down. Loneliness, anger, anxiety, depression or insomnia are all signs it’s time to reach out to a counselor. Ask your doctor for a recommendation. Your support group facilitator may also know of someone who has been particularly helpful to others facing caregiving stress.
Giving care to the point of exhaustion puts your physical and mental health in danger, jeopardizing your very ability to continue. On the other hand, getting help with caregiving is a way to take better control of your situation. It can restore some order to your life. And you’ll be able to keep your loved one at home for longer if you do all you can to avoid burnout—by starting early to get help at home.
Where to look for help
Eldercare.gov will help you find your local Area Agency on Aging, which has information about services and subsidies available in your area.
Alz.org/help-support/caregiving/care-options/in-home-care takes you to an article on choosing an in-home care provider. It describes the levels of service available.
Alz.org/help-support/online-tools can connect you to a social networking community, a tool to assess your needs, a community resource finder, and a clinical trial matching service.
Alzheimer’s Association Helpline, 1-800-272-3900, is available 24/7 with support and information.
Caregiver.va.gov is a Veterans Affairs site with support for caregivers and links for many services available to veterans.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.