Thud! Lydia had fallen again. Every time Sylvia left the room, her sister got up to follow her. If Sylvia went to fix dinner, Lydia, who has Alzheimer’s disease and vertigo, would try to tag along but forget to use her walker. After a couple of steps, she would topple over. If the doorbell rang, it didn’t work for Sylvia to say, “Stay where you are; I’ll get it!” Lydia would try anyway and land once again on the floor. The local rescue squad had helped Sylvia lift Lydia so many times, they called themselves “the pick-up service.”
When people with dementia have a physical problem they need to compensate for but can’t remember to do that, the added burden on their care partner can tip the balance from bearable to unbearable. Many things—such as incessant questions—can do that. The shift should alert you, the caregiver, to seek help.
Getting help is the best way to keep your loved one at home longer. Later on, home care may no longer be the best choice, and I will point out situations that change that balance. But before then, various kinds of help can give you the break you need. For example:
You can ask friends and family to take over for an hour or two. After Lucille told her three daughters she needed a break, they took turns staying with their dad on Saturdays, and she got a day off. The daughters gained empathy for their mother and what she was dealing with.
Hiring home care aides for a few hours once or twice a week can give you a chance to accomplish tasks without your loved one, to see friends or—like one caregiver I know—to sit by the river and reclaim a sense of peace. Or you can attend an Alzheimer’s caregiver support group, where you’ll be boosted by peers who understand what you’re going through.
Adult day programs not only provide you with downtime, they add socialization and stimulation to the life of someone with dementia. Day programs closed during COVID, but many have now reopened. You can choose how often your loved one will attend, based on your needs or your loved one’s, and your finances.
Respite care is temporary care, usually in assisted living. It can give the caregiver a break for a few days or a few weeks. It is also a chance to see how the person with dementia does in a residential situation and incidentally see if the care at that home is good. You may have to call around to find respite care and need to reserve a room well ahead of time.
Help with caregiving is not cheap, but financial assistance may be available. If your loved one has long term care insurance, it may cover some of the cost. For other sources of aid, try the website of your state’s Department of Human Services, Division on Aging. It should lead you not only to the state funds available but also to your county Area Agency on Aging, a good place to find information. For those eligible, state Medicaid programs are the main source of help in paying for long term care, but if you or your loved one is a veteran, the Veterans Administration has its own nursing homes.
No caregiver wants to move a spouse or parent out of their home. But Alzheimer’s and other dementias are progressive diseases, and in the late stages, the around-the-clock care needed is almost impossible for a family to provide. Although most people with dementia live at home early and midway through the disease, in the end most will be in residential care.
Care partners in the Alzheimer’s support groups I lead often ask me, “How will I know it’s time?”
One answer is, “When you‘re so exhausted, you just can’t go on.”
When I was caring at home for my mother, who had Alzheimer’s, I looked at my husband one day and exclaimed, “Oh Roge, you look so tired!” He replied, “Have you looked at yourself recently?” I hadn’t, but I did, and I knew we couldn’t go on. The balance had tipped. An exhausted caregiver cannot provide cheerful and loving care.
Here are other common tipping points that indicate it’s time.
Your loved one is no longer safe in her present environment. Tim was caring attentively for his wife, Rose. He had set up alarms on the front and back doors because Rose often walked out of the house. The alarms saved them multiple times in the middle of the night—until the night Tim slept in another bedroom to get some uninterrupted sleep. He didn’t hear the alarm go off, and the police found Rose walking down a busy road almost two miles away.
Your relative no longer recognizes you or their home. This may make your loved one’s adjustment to a new place no more confusing than being at home already is.
Your loved one suffers an illness or injury that’s hard to handle at home or puts them in the hospital. A move from the hospital to a residential home is sometimes easier on all than a move directly from home.
The care required is beyond your physical abilities.
One-on-one, 24-hour care at home is too expensive and hard to sustain. It can cost more than assisted living, where the care is not one-on-one. It can also place a lot of responsibility on the family. Often, agencies can only fill 24 hours with a patchwork of aides, many of whom are not well trained in dementia care. You may find yourself a full-time manager.
You, the caregiver, become sick or require hospitalization. Sylvia, caring for her sister Lydia, needed emergency surgery. Luckily, the home care aide she had hired to relieve her twice a week was able to come and stay with Lydia for three days while Sylvia was in the hospital. But the long rehabilitation Sylvia needed meant she could no longer keep Lydia at home.
Your loved one becomes bowel incontinent. Some caregivers can handle urinary incontinence, but bowel incontinence crosses the line. If you think you can do it, keep in mind that at home, you alone will be the one to clean up the person, clean up the area where it happened and wash the clothes, sheets and towels involved—all, while not humiliating your loved one. At a care home, the job will be split between direct caregivers, housekeeping staff and laundry workers.
Disordered sleep keeps your loved one up most of the night, depriving both of you of sleep. Eventually, he (or she) may become aggressive, putting you at risk.
When you reach your tipping point, it will be a huge advantage if you have already investigated nearby residential care options. You can think more clearly and weigh your options better if you aren’t stressed, pressed for time and exhausted.
That doesn’t mean deciding and acting will be easy. I did my research ahead of time and identified a good place for my mother. We held on for another six months, but that whole time, the certainty that we were going to move her hung over me like a crime I was doomed to commit.
That feeling of guilt is almost universal. Try to focus not on where but what the person needs.
A good care home provides some things more readily than you can, such as 24-hour supervision; staff to spread the load; more opportunities for him or her to socialize and feel a part of something; and stimulating activities. When your relative is upset, a staff that has been trained in dementia care may also find it easier to respond in an objective way. Your own relationship may be bruised by years of seemingly unreciprocated giving.
You may find that relationship improves once you’re relieved of giving direct care. After we moved my mother to a care home, all my tender feelings for her, which had gotten buried under the burden of her care, came rushing back.
One day, as I entered the nursing home to smiles and cheerful greetings, I reflected that my mother and I were so lucky to be a part of this community of kindness!
I was blessed in finding an exceptionally good home. They are out there, but you need to do your homework to find one. In my next blog, I’ll explain how to do that.
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.