Family caregivers sometimes die before their loved one

David Heitz
Steven HWG/Unsplash

Half of all family members who care for elderly people die before the patient, statistics show, or they become seriously ill due to self-neglect.

The study was published in the Journal of the American Medical Association.

The study, conducted by psychiatrists at the University of Pittsburgh, examined 392 caregivers and 427 non-caregivers ages 66 to 96 who were living with their spouses. Those providing care to a spouse were 63 percent more likely to die than those who were not.

Caregivers who did not report feeling stress from the job did not have the higher mortality rate. Spouses of people with disabilities who did not provide direct care didn’t either.

Why are those giving the care dying? Because caring for the elderly, especially someone with dementia, is hard work.

People with dementia can be difficult to communicate with due to their illness. They need to be watched constantly, like children. And they can become violent.

Millions of adults currently provide care to elderly family members, saving the healthcare system billions of dollars per year.

The cost comes in the form of poorer health for the caregivers. “There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity in the form of increased depression,” the authors wrote.

“Everybody is so worried about a cure … I know that we want a cure, I get that,” caregiver advocate Diane Carbo said. “But the issues that are more serious are the caregivers, the lack of continuity of care, and caregiver support.”

Social isolation is the classic hallmark of a family caregiver. “I tell my caregivers, you are the most single important part of the equation. Without you, it all falls apart.”

Who cares for the caregivers?

She said caregivers need respect as well as financial support in some form or another for providing care.

“At the end of life, when this is all over, most (caregivers) end up financially devastated,” Carbo said. “They have lost their job; they were negatively impacted financially as a defenseless individual.”

For many caregivers the stress becomes more than they can handle.

“So many of them become ill or die,” Carbo said. “Those are the issues that I see we are not addressing

It’s why nursing homes, assisted-living and memory care communities handle unruly patients by encouraging doctors to sedate them. That can be cruel, but sometimes it is necessary in places that are not properly staffed.

When nobody will take mom or dad

Some dementia patients can be so difficult to handle the extended care facilities won’t even take them. That leaves them in the untrained hands of exasperated loved ones who can’t find any help.

Diane Carbo believes the healthcare industry needs to develop guidelines for true, standardized dementia care. She also advocates for financial and respite support for family members who try to care for people with dementia in their homes.

Carbo is a registered nurse with decades of experience. She also operates a web site that offers caregiving news.

Carbo expressed disappointment when neither item made the agenda for the White House Conference on Aging hosted by President Obama several years ago.

“Paying the family caregiver some kind of stipend to provide care, or at least respite care … we have no funding for respite care in this country at all,” Carbo said. “The family caregiver is the invisible patient. They are so busy monitoring someone else for 24 hours that they neglect themselves.”

'Memory Care' means the doors are locked, expert says

Many families choose to put their loved ones in assisted-living facilities that label themselves “memory care.” What that usually means is locked doors. Period.

In many places, at best, it means the staff attended a two-week seminar on caring for people with dementia.

There are some true “memory care” communities, but they are few and far between.

“If it’s truly a dementia care unit, the staff would have training that would allow them to handle behaviors,” Carbo said. “You also need behavioral specialists and neuropsychiatrists on staff.”

Instead, they sedate the patient, so they won’t become a problem. The patient essentially becomes mentally vegetative.

“There needs to be a totally different approach to handling dementia,” Carbo said. “There are no regulations, no standardized dementia care.”

The plus-90 group is the largest growing demographic by age in the U.S. As that group grows, so do the number of people in the U.S. with dementia.

Tips for keeping caregivers healthy

1. If you are providing care to a family member with dementia, you need to acknowledge the toll it takes on you. That’s the first step in making sure you take proper care of yourself.

2. It’s important that you remember to eat healthy and on time throughout the day.

3. Do whatever it takes to make sure your needs are met before meeting your loved ones needs. It’s like flying on an airplane when the cabin loses pressure. Put on your mask before your child’s mask.

4. Create a list of people who will agree to sit with your loved one for a couple of hours while you take a break. You can use the time to take a walk, run an errand, or get in a quick nap. These quick respites will do wonders to keep your batteries charged.

5. Don’t neglect your other relationships. Your spouse probably counts on you for love and affection. Don’t forget about them.

Keep in touch with your children when caring for a loved one. After all, they’re the ones that probably will end up taking care of you someday.

6. Maintain some sort of exercise regimen, even if it’s minimal. It’s important for caregivers to stay healthy. Exercise is a great way to relieve stress and stay limber as you age.

7. Keep a “moments” list. Write down tender moments you share with your loved one while providing care.

8. Always remember how much your spouse or parent loves you and appreciates the care you are providing, even if they can no longer show it.

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I have been in the news business more than 30 years, spending much of my career at some of the best newspapers in the country. Today, I specialize in Denver local news, health reporting, social justice issues, addiction/recovery/mental health news, and topics surrounding homelessness and human trafficking.

Denver, CO

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