I met with an adult child of a client earlier this week. When the family first came to me about a year ago, the wife had late-stage Parkinson’s and the husband had been her primary caregiver for many years. The husband was clearly experiencing the stress and fatigue of caregiver burnout. He realized he could no longer care for her at home and had made the agonizing decision that he needed to put his wife in a nursing home. During all the years he was caring for his wife, he ignored his own health and various pains and health problems he was experiencing. Now, because he ignored his own health for so long, it turns out he has terminal cancer and isn’t expected to live for more than a week. Meanwhile his wife is still suffering from Parkinson’s and is now in a nursing home. At least we were able to do critical Medicaid Asset Protection planning while the husband was still able to participate. Upon the husband’s death, all of their protected assets will be able to be used to benefit the wife, who is now on Medicaid. This will include by paying for all of the things that will help her, which Medicaid does not cover, such as a private companion to be with her in the nursing home now that she is losing her faithful husband of over 50 years.
I’ve written articles on caregiver burnout, but this case is different — it’s not just the stress and fatigue of caregiver burnout that harmed the caregiver, but also the caregiver ignoring their other health problems because they are so focused on the needs of the care recipient. This led me to research the scope of this issue, and I present to you what I found below. The statistics are quite sad.
“My wife is missing both legs. If I cut or injure one of my feet, should I ignore it simply because it pales next to her reality of having no feet? Who am I to stop what I’m doing as her caregiver and attend to an injured foot—when she lost hers?” – Peter Rosenberger, Author of 7 Caregiver Landmines and How You Can Avoid Them
In his book, Rosenberger describes the first “caregiver landmine” as ignoring your own health needs as a caregiver. He cautions that we often push our own health needs to the back-burner to devote ourselves to caring for a loved one. According to Rosenberger, this “principle applies across the board to our entire body (and hearts, wallets, jobs, etc.)”
By necessity, most caregivers perform tasks that used to be be done by licensed medical personnel, and by doing so, have learned a lot about healthcare. However, the application of that knowledge for our own health is a different story — a story that needs to change. As Rick Lauber, author of the book, The Successful Caregiver’s Guide puts it, “(c)an a vehicle continue to run without regular fill-ups and service? No!” According to Lauber, “Caregivers are no different. Caregivers helping and supporting aging loved ones routinely give too much of themselves while overlooking their own health and wellness.”
Study Shows Caregivers are Neglecting Their Own Health
More than 43 million adults in the U.S. function as caregivers each year, according to data from the National Alliance for Caregiving and AARP . A study by the American Psychological Association, published in the journal Rehabilitation Psychology®, states that people who regularly care for or assist a family member or friend with a health problem or disability are more likely to neglect their own health.
The study used data from more than 24,000 people who participated in an annual phone survey conducted by the U.S. Centers for Disease Control and Prevention. Participants reported that they had provided regular care or assistance to a family member or friend with a health problem or disability within the 30 days prior to the survey. The survey found that:
- Nearly half (49.7 percent) of caregivers had been in this role for two years or longer.
- While more than half (54.7 percent) provided up to eight hours of care a week, 22.7 percent put in 20 or more hours.
- Personal care (medications, feeding, dressing and bathing) was provided by 50.6 percent of poll respondents.
- Household tasks (cleaning, managing money and preparing meals) were done by 77.1 percent.
What was really eye-opening was that:
- Nearly 30 percent of these caregivers reported experiencing at least one limitation to daily activities because of their own physical, mental or emotional problems.
- Further, one-fourth of the caregivers reported that they had been diagnosed with a depressive disorder by a health care provider at some point during their lives, representing a 36 percent increased risk over non-caregivers, according to the study.
- The study also found that 59 percent of caregivers were less likely to access needed health services for themselves.
And if you’re not sick already, other studies have linked informal caregiving to a variety of long-term health problems. For caregivers of those with dementia, it is common to struggle with the problems related to the disease, such as agitation, aggression, trouble sleeping, wandering, and confusion. These caregivers spend more days sick with an infectious disease, have a weaker immune response, and have slower wound healing. Caregivers, in general, are also more likely to have heart disease, cancer (like the client I mentioned at the beginning of this article), diabetes, arthritis, and excess weight, and are at higher risk for depression and anxiety. Lastly, caregivers are more likely to have problems with memory and paying attention.
Caregivers — Please Take Care of Yourselves!
Taking care of loved ones with dementia or other debilitating or neurodegenerative diseases can be especially demanding, but more so when you are living with health complications yourself. Research suggests that these caregivers bear greater levels of physical and mental burdens than caregivers of the frail elderly or people with diabetes. Here are some common sense tips for caregivers:
- See your doctor regularly: Be sure to tell your health care provider that you’re a caregiver, and mention if you have symptoms of depression, fatigue, stress, pain, or other illness.
- Ask for help: Make a list of ways others can help. For instance, someone might pick up groceries or sit with your loved one while you do errands for yourself or attend to your own medical needs.
- Take breaks each day: Take breaks to unwind and relax. You might be able to reduce your stress and improve your health simply by taking slow, deep breaths, listening to soothing music, or taking a relaxing bath.
- Keep up with your hobbies and interests.
- Get enough good sleep: Sleep can have a huge effect on how someone feels both emotionally and physically. Not getting enough good sleep can cause or exacerbate major health issues.
- Join a caregiver’s support group: Meeting other caregivers in similar situations in person or over Zoom can be beneficial to exchange stories and ideas.
- Utilize caregiving resources in the community: Most communities have adult daycare services or respite services to give primary caregivers a break from their caregiving duties. Do some research and use these available resources.
- Eat healthy foods, exercise, and take your own medication: If you are able, exercise can reduce stress and depression and help you keep fit, while a good, balanced diet with smart food choices might protect you from heart disease, bone loss, and high blood pressure. While eating healthy and exercising, be sure to continue to take your own medications to help yourself why you are helping your loved one!
When You Can No Longer Provide the Care Needed for Yourself and/or Your Loved One
If you are a caregiver who is suffering from illness yourself, you should periodically reassess what you can offer and what assistance your loved one needs. If it’s getting too difficult to fulfill certain needs, you should ask family members for help or consider other options, such as hiring paid caregivers to take on these tasks. If necessary, you should consider or at least plan for another living arrangement that would help you meet your needs and those of your loved one.
Nursing homes in the Metro DC area cost $14,000-$17,000 a month, which can be catastrophic for most families. It’s always helpful to plan ahead in the event nursing home care is needed in the future. Life Care Planning and Medicaid Asset Protection is the process of protecting your assets from having to be spent down in connection with entry into a nursing home, while also helping ensure that you or your loved one get the best possible care and maintain the highest possible quality of life, whether at home, in an assisted living facility, or in a nursing home. Please know that we are always here to help.
Elder Law Fairfax: 703-691-1888
Elder Care Fredericksburg: 540-479-1435
Estate Planning Rockville: 301-519-8041
Medicaid Asset Protection DC: 202-587-2797
About Evan H Farr, CELA, CAP
