Caregiving for a family member with Alzheimer’s or dementia is a full-time commitment. Even if you’re not living with your loved one full time, you may worry constantly and be on edge every time the phone rings. You might feel guilty about time spent away or taking care of yourself, and you may feel alienated from friends and relatives who don’t understand the burden you’re under. If you are a full-time caregiver, the responsibility alone can be overwhelming — especially if the person you’re caring for is no longer able to express their appreciation for your help.
According to the most recent report for the National Alliance for Caregiving in partnership with the Alzheimer’s Association, conducted in 2017, more than half of dementia caregivers work full-time. The report also found that dementia caregivers provide care for an average of 28 hours a week. That can be like running a marathon while carrying a heavy load on your back.
Because of this, caregiver burnout is a major concern, and a reason that it is as important to care for yourself as it is to care for your relative with dementia, says Amy Goyer, the family and caregiving expert for the AARP and author of “Juggling Life, Work and Caregiving.” “I had a revelation one day while filling up my car at the gas station, that just as my car runs better on a full tank of gas, I run better when my tank is full,” she explains. “Taking care of yourself isn’t selfish, it’s practical.”
“I had a revelation one day while filling up my car at the gas station, that just as my car runs better on a full tank of gas, I run better when my tank is full. Taking care of yourself isn’t selfish, it’s practical.”
—Amy Goyer, author of “Juggling Life, Work and Caregiving”
“Indulge” in daily acts of self-care
If you feel guilty taking an hour out of your day to refresh and refuel yourself, remember that self-care is a crucial part of your ability to give quality care. If you’re tired and unhappy, you will have less patience and less ability to focus and come up with creative solutions to the host of everyday problems presented by caring for someone with Alzheimer’s or dementia.
If you are the full-time caregiver to someone with dementia, finding even a few minutes to focus on yourself can be a challenge. Asking a neighbor or a family member to sit with your relative while you get out of the house to get a cup of coffee and read the paper, get a manicure or talk on the phone uninterrupted with a friend can help refuel your tank, says Goyer.
You can also hire a paid companion for a few hours a week, or look into adult day care services in your area. These provide a few hours of structured activities, such as arts and crafts and music, for those with dementia. Even if you’re worried your loved one won’t take full advantage of the activities, it can provide you with a much-needed break to take care of your own needs. Having meals delivered or getting help around the house with other chores (through an app such as TaskRabbit) can help relieve some of your burden as well.
Nataly Rubinstein, a licensed clinical social worker, founder of Alzheimer’s Care Consultants and author of “Alzheimer’s Disease and Other Dementias—The Caregiver’s Complete Survival Guide,” acknowledges that it can be difficult to let go during these times. “It’s like the first time you leave your child with a babysitter, you’re on pins and needles knowing that they may not do things your way, and they won’t understand your mother like you do,” Rubenstein says.
But as long as your loved one is safe, it’s OK if the substitute caregiver just watches TV with her for an hour or two, or she sits quietly at day care without participating. Your self-care is just as important as hers.
Use respite care
Every now and then you will need a tune-up — a few days away from your relative to rest and recover before going back to your full-time caregiving duties. “That can be the hardest for caregivers to do,” says Goyer. “You have to plan very carefully ahead.”
One option, says Goyer, is to ask a sibling or other relative to come stay with your relative for a few days. If that’s not possible, she suggests calling your Area Agency on Aging to ask about facilities that provide respite care. This might be an assisted living facility or nursing home where your loved one can stay for a week at a time. “If you travel away during this time, just be sure you have a backup person in place in case something happens while you’re gone,” says Goyer.
Join a support group
The demands of caregiving for a person with Alzheimer’s or dementia can be extremely isolating. Finding a group of people who are in the same situation can not only lessen the isolation but can also be a source of moral support and practical advices.
Recognize caregiver burnout
Ask your doctor for a referral to a mental-health provider, or contact the Alzheimer’s Association or the Family Caregiver Alliance for information on where to get help (even if you don’t have time to attend a support group, you can speak to a social worker 24/7 via the Alzheimer’s Associations help line, 800-272-3900) if you find yourself grappling with any of the following symptoms:
- Feeling completely overwhelmed.
- Experiencing sadness and depression.
- Not being able to function as well as you have before.
- Yelling at the person you’re caring for, or crying excessively.
- Lying awake at night worrying.
- Not eating/losing weight.
- Feeling isolated.
- Using alcohol or pills to get through the day.
- Feeling hopeless/suicidal.
Find moments of joy
It’s helpful to remember that even a person who is in the later stages of dementia can still experience joy and laughter, and finding those moments where you can connect with a smile can help you get through the tough times, says Rubinstein.
“If you’re caring for your spouse, turn on the music you used to dance to when you were dating — music can change your entire mood,” Rubinstein says. Put on a video of an old slapstick comedy routine, or watch a movie musical that you both love. “Not every day will be great,” she adds. “But you will have some good moments and good days.”
