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Caregiving is tough. It can be rewarding at times, but it is also challenging. Most of us understand how hard it can be to watch a loved one deteriorate from an illness of any kind, whether it’s your parent, spouse/partner, or child. But I bet many don’t realize the physical toll caregiving can exact – the pain when physical care becomes more difficult. This can be a particular problem if the illness is prolonged.
The Centers for Disease Control and Prevention (CDC) says that more than one in five Americans are caregivers, and the numbers are increasing.
When caregivers begin to experience physical problems, illness or pain, they can get to the point that they can no longer be effective. They might not be able to get their relative in and out of bed, bathe them, or toilet them. The caregiver may be unable to drive them to a doctor’s appointment, get groceries, or prepare meals. The relative may end up suffering and the caregiver feeling guilty, contributing to a downward spiral for both.
More caregivers than ever before
The Centers for Disease Control and Prevention (CDC) says that more than one in five Americans are caregivers, and the numbers are increasing. There were 43.5 million caregivers in 2015 and about 53 million in 2020. Since there will be an estimated 73 million people 65 years or older in the U.S. by 2030, the need for caregivers will continue to rise.
What is particularly telling to me is that almost 80% of caregivers are 50 or older themselves. Many people in their 50s and 60s are perfectly healthy, but it is also a time when chronic illnesses and injuries start to appear. If someone isn’t at their best, becoming a caregiver may exacerbate the problem or keep them from the self-care needed to treat or alleviate the issue.
A study published in The Gerontologist in September looked at caregivers experiencing pain and whether it limited their ability to provide care. Gathering data from almost 2000 caregivers of older adults, the researchers found that 51% of caregivers reported having pain of any kind and 24% of them reported that the pain was activity-limiting. The researchers also found that 40% of the caregivers overall had a diagnosis of arthritis; 75% of them said the pain was bothersome, and 30% said that it limited their activities when providing care.
Earlier studies emphasized the need for support
This isn’t the first time caregiver health has been studied over the years. In 2019, researchers looked at caregivers as both part of the health team and as “second-order patients.” The researchers wrote, “Family caregivers are often a neglected and at-risk population.” They also wrote, “[R]esources for caregivers are limited, fragmented, and discontinuous, despite the evidence that family caregivers experience intense physical, emotional, and social distress.”
Emergency placements are the most stressful of placements because they are sudden and there’s no preparation for the person involved.
This can be serious. I saw it as a nurse when patients were admitted to the hospital and their family caregivers appeared broken – mentally and physically. They didn’t dare allow someone else to provide care or to take advantage of respite care for a break, but they could no longer manage on their own. And then the inevitable would happen. The caregiver would become ill or so injured that they would be hospitalized, resulting in an emergency placement for their loved one. Emergency placements are the most stressful of placements because they are sudden and there’s no preparation for the person involved.
I’ve seen it personally through a dear friend who has been caring for a fully dependent spouse. At first, the care was more emotional and gate-keeping, keeping the spouse from becoming injured or wandering, and ensuring that they ate. Now, the care is total as the spouse cannot perform any function alone. My friend is only a couple of years older than I am, but their body has taken a beating from that very physical care. They are doing their best, and, in all my years of nursing, I have never seen a spouse give such dedicated care – but at what cost to them?
Healthcare system depends on family caregivers
The healthcare system needs family caregivers. The longer someone can stay home, the fewer facility resources are required. So wouldn’t it stand to reason that we should support the family caregivers and provide them with help and resources?
For generations, aging and dying at home wasn’t unusual. When I grew up in the 1960s, most of my classmates’ mothers were stay-at-home moms. I knew many people with a grandparent living with them or within walking distance from their home. Siblings and cousins still lived fairly close by, so they could lend a hand when needed. As a child of immigrants, I was always impressed with friends who talked about aunts, uncles, and cousins getting together. It was such a foreign concept for me!
Fast forward to today. Both parents are often working and there are many more single-parent families. Families are more spread out, and people are now living longer with chronic illnesses that would have killed them earlier just a few decades ago. This changes the whole caregiver/relative dynamic. If no adults are at home during the day, who can care for an older relative? And if a caregiver is available, who can help when needed if the caregiver needs a break or becomes ill?
Promises can be broken
I cared for several older patients when I worked in the clinical setting. I’d often see their exhausted spouse or child at their bedside. They needed a break because they were reaching breaking point – if they hadn’t reached it already. When/if appropriate, I would ask if they ever considered finding a facility to help care for their loved one. So many times I heard responses like, “My mother made me promise never to put her in a nursing home,” or “I promised my husband I would care for him at home until he died.” That would break my heart and, truth be told, it angered me. I remember thinking that it was selfish for someone to make a loved one promise that they would never place them in a home. That person was not thinking about the toll that caregiving takes and the problems it can cause.
To me, that promise should be broken if the cost of caregiving is the caregiver’s physical or mental health.
It bothered me so much that my advanced directives, legally drawn up, states that if I become unable to make decisions myself, my spouse (or children, should he die before me), should place me somewhere if it is no longer safe for me or practical for me to be at home. I would never force a promise of forever care.
Anyway, I’m going off-topic. The point of today’s newsletter issue is to help people realize that we will have a big crisis if we don’t do something to help the helpers now. In some families, one person steps up to be the caregiver and is happy to do so. Other family members are grateful that someone has taken charge. But those family members must realize that the caregiver cannot be expected to do it alone and needs help – maybe not at first, but eventually.
There are many ways you can help a family caregiver. You can give them a break. Take some shifts or days so the caregiver can see friends, go away for the weekend (or longer), or just take time for self-care.
The CDC also offers these ideas:
Help them with errands, chores, and other tasks.
Provide emotional and social support.
Negotiate times to check in on them.
Make sure they are managing their own healthcare needs.
Help them create and manage a care plan for the person they care for.
Encourage them to seek mental health services if necessary.
For the caregivers, there are things that you can (and likely should) do as well.
The most important thing is to ask for help. Many people don’t know what to offer. If you can be specific about what you need, it’s easier.
This is what the CDC suggests:
Identify a caregiving task or a block of time that you would like help with. Perhaps there’s a book club meeting you’d like to go to that you’ve been missing because of your caregiving responsibilities. Be ready when someone says, “What can I do to help?” with a specific time or task, such as, “It would be really helpful for me if you could stay with Mom Tuesday night so I can go to my book club for 2 hours.”
Be understanding if you are turned down. The person may not be able to help with that specific request, but they may be able to help another time. Don’t be afraid to ask again.
If you have trouble asking for help face to face, try writing an e-mail to your friends and family members about your needs. Set up a shared online calendar or scheduling tool where people can sign up to provide you with regular respite.
You can also reach out to organizations related to your loved one’s specific disease or condition, like the Alzheimer’s Association or the American Cancer Association. They may have resources for you.
Finally, don’t be afraid of respite care. This is a service where you can leave your relative in a facility or have services at home for a limited time, like a week or two. This allows you to go away or stay home by yourself.
We may not live in the same kind of communities that previous generations did, but with planning, the load doesn’t have to be as lonely or heavy.
What do you think about family caregivers and support? Are you a caregiver? Leave your comment below. Let’s get a conversation started.
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