Much has been written about the challenges that caregivers face. It’s a full-time unpaid position that no one applies for or aspires to hold. It is undertaken, sometimes suddenly and sometimes by degrees, out of any combination of love, devotion, and duty.
In 2012, 65.7 million people, making up 29 percent of the U.S. adult population, were caregivers to some degree. The high percentage is due to advances in medical care – people are living longer, but are not necessarily able to live without help. For either financial or personal reasons, many choose to live at home rather in assisted living or another type of facility; if so, their needs are often met by a friend or, more commonly, a family member.
Two-thirds of caregivers are women, but there has been an increase in the number of men who have taken on this role; this trend is expected to continue. Currently, when looking at married couples age 75 or older, the man is as likely as the woman to be the caregiver.
We talked to a man named Perry, who is an example of this “man as caregiver” trend. His situation is somewhat unusual in that both he and his wife were in their 50s when he began to provide care, as a result of his wife’s early onset dementia; she has since died. “I just started taking responsibility for everything – cleaning, cooking, shopping, managing the finances, talking to her doctors. At first, she didn’t want to deal with any of those things. After a period of time, she wasn’t able to,” says Perry, who did not want his last name used for privacy reasons. As her dementia progressed, his wife also needed assistance with daily hygiene.
A more typical caregiver scenario is that of 80-year-old Gloria. Her husband has late-stage Parkinson’s and spinal stenosis, and needs her help for all daily activities. “At first, he just needed help walking,” Gloria says. “His Parkinson’s affected his balance. He then started using a cane, then a walker, and now we use a transport chair.” A wheelchair would give her husband more independent mobility, but the doorways in their house are not wide enough to accommodate one.
Gloria has had health issues of her own—a stroke from which she fortunately fully recovered, and macular degeneration in one eye. She recognizes that she won’t be able to keep up this level of care for more than another year or so, and that she and her husband will have a difficult decision to make. “We are both private people, so it’s hard to think about someone being in our home. But neither of us likes the idea of him being in a nursing home.”
In the meantime, Gloria is ready to make some short-term changes. “I’m trying to do everything and I just can’t. I like to cook and probably won’t give that up, but I am ready to get help cleaning the house.” Every few months, she takes a day trip with friends; both she and her husband see that the respite does her a lot of good. She is now open to hiring a home health aide on a regular basis, so she can have more frequent breaks – lunch with friends, visits with her grandchildren.
Recognition of how difficult it is to be a caregiver has resulted in readily available and consistent information. The following guidance comes from the Caregiver Action Network:
• Seek support from other caregivers.
• Take care of your own health.
• Accept offers of help and suggest specific things people can do to help you.
• Learn how to communicate effectively with doctors.
• Take respite breaks often.
• Watch for signs of depression in yourself and don’t delay in getting professional help.
• Be open to new technologies that can help in the care you are providing.
• Organize medical information so that it’s up-to-date and easy to find.
• Make sure legal documents are in order.
• Give yourself credit for doing the best you can in a very tough job.
These tips have an upbeat, “can do” tone and there is nothing wrong with that. However, there is another aspect of caregiving that warrants examination – the frustration that caregivers often feel.
The Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy. Among other valuable pieces of advice, the FCA says “it’s important to distinguish between what is and what is not within your power to change,” as frustration often results from trying to control the uncontrollable.
Perry says one of the most frustrating parts of his caregiver responsibilities was preparing his wife’s meals. “It was a constant struggle getting her to eat. She would change her mind about what she wanted and I would sometimes make her two or three different things. For a while, I tried saying that there was only one choice, but then she wouldn’t eat at all.” So he knew that it might take multiple attempts to prepare a lunch his wife would eat; he accepted that as being out of his control and did not become frustrated.
Gloria has her moments of frustration – usually at night, when she is tired after a long day. She recognizes that this situation is within her power to control and is considering hiring help for the nighttime hours.
As it the case with most caregivers, Perry and Gloria put the needs of their loved ones above their own. Perry says of his late wife, “all that really mattered to me was that she was happy and content.” Gloria knows she is a compassionate person and finds strength in praying for patience.
All caregivers, no matter how patient, have their moments of frustration. One thing that is within their control is to maintain a social network and outside-the-home interests. This provides a necessary respite and renewal, and is of benefit to them and the ones for whom they provide care.