Oh, February – wishing for sunshine and missing the warm feelings of the holidays... Valentine’s Day is a welcome change from the routine, whether you even like this holiday. I’m generally not a fan of Valentine’s Day but this year I do have a love letter to send.
All of you caring for a spouse or ex, a partner, a relative, a friend, or a neighbor who has no one else, this one’s for you.
A call from a retired colleague, Sean, reminded me of just how important caregivers are to all of us. Caregivers make long-term care work in America – they provide most of it and they do it for free.
Myth: Care giving isn’t important and only affects a few Americans.
Care giving is a very common experience for Americans but many don’t recognize we are caregivers. We are giving personal care, emotional support, and compensating for things others can’t do for themselves _ getting dressed, preparing a meal, traveling to appointments or managing finances.
It’s estimated more than 65 million of us are caring for an adult relative. That’s about one in three Americans. The proportion of caregivers is even larger in some communities. For example, some suggest almost half in the gay community may be giving care to members of both their birth and current families.
Like Sean, about 15 million Americans are caring for someone with dementia. This is uncompensated care our healthcare system and social service agencies do not deliver or finance. These are massive numbers, totaling by most estimates well over $400 billion a year nationwide. That’s billion with a B. It’s more than what is spent in nursing homes and other long-term care providers. And the total doesn’t include hidden costs such as low productivity or absenteeism from work.
Care giving often is misunderstood and mythologized. Why, because care giving needs and experiences are varied. And care giving is invisible and a challenge to the way we believe things ought to be. It becomes something we generally avoid talking about openly.
Myth: Care giving is generally temporary and easily managed.
Sean is in his late 60s and he and his second wife Kit are in a situation so many of us share. Kit has Alzheimer’s – the most common form of dementia – and the disease is pretty advanced.
Kit is older than Sean by a few years and was diagnosed about eight years ago. When first told she had dementia, Kit needed supervision to cook and needed to be reminded to shower and go to bed. Kit was embarrassed. Kit needed emotional and spiritual care from Sean. She realized something was wrong and getting worse, understanding enough to be upset and scared. Every day, Sean was there for her. You couldn’t imagine a more loving husband.
Sean has been taking care of Kit for eight years a bit longer than national averages. Care giving is a long-term arrangement for many however; the average time spent as a caregiver is not months, but years – more than four years on average. Care needs often change over time and it is not uncommon for many caregivers to manage growing needs from one and sometimes two or three people. As we expect with dementia, Kit’s condition has worsened and her abilities have faded dramatically.
Kit doesn’t know Sean’s name anymore but she knows he is important to her. Whether it is going to the bathroom or watching TV, she needs help to do it and guidance to stay focused. No matter what Kit needs, Sean does it all – all day and night, seven days a week. He is cooking, cleaning, driving and keeping her healthy, safe, and even gets her to smile.
But Sean is not smiling. He is exhausted and confused. Don’t misunderstand Sean’s situation. He wouldn’t have his situation any other way. The love he and Kit share sustains him. More and more, that love gets him through the toughest moments, but barely.
Sean is far from being alone in his exhaustion and confusion. Most caregivers spend about 20 hours a week in activities for the person to whom they provide care. A good number spend much more time. Most of this is on top of a paid job outside the home. About half of caregivers work outside the home.
Many like Sean are caring for spouses and partners and have health problems themselves. Sometimes it is a toss-up as to who needs the most help – the caregiver or the disabled person. Sean told me he hasn’t been to see his nurse practitioner for more than 18 months and knows he needs to.
Myth: There many options for care giving and caregivers.
Desperation drove Sean to call me. Things at home are so difficult for Sean to manage and his resources are so few that he picked up the phone and called me – the first call in a long time.
Caregivers are finding that help and resources are not organized in one place and they face real challenges finding the right resources and getting the help they need.
Perhaps it has to do with care giving being so invisible in our society. You can just dial 1-800-CONNECT-THE-CAREGIVER (not a real number, of course, but many caregivers wish it were) and find all you need in one place. That kind of integration doesn’t exist, especially when it’s not emergency health care needs but rather social programs you want. That’s Sean’s situation with Kit now. She is rather healthy, except for her dementia and so services like Medicare-funded homecare aren’t for her. Sean would like to consider if a special dementia care unit in a nursing home is right for Kit but he doesn’t have much money, time, or direction.
Myth: Caregivers are women and are doing what they are supposed to do for their families.
Sean’s situation is a reminder that not all caregivers are women. Yes, it is true most caregivers are women in mid-life who are working and caring for older family members, friends, and neighbors. They are wives, daughters, and sometimes daughters-in-law. Even so, men and younger people are taking care of older, ill family and friends who need help every day. About one third of caregivers for older people are men and that number grows to half for those caring for a young or mid-life adult. And by some estimates, there are as many as 1.5 million children who provide care to adults, most older.
The problem with the myth of care giving as a women’s issue is two-fold. First, women then don’t get the help and support they need from other family and friends. No help means a ripple effect for everyone. Other family responsibilities – like child care for instance – are short-changed. Work becomes catch as catch can with absent days, the need for family leave, and the real risk of unemployment.
Second, caregivers who are not middle aged women become even more invisible, compounding the difficulty of being a caregiver and being supported in the care they provide.
Care giving is a tough job, a really tough job. You meet every need you can and look out for what’s next. Physical care spans help with very personal activities like bathing and dressing to complex medically necessary interventions. Psychological care is unending – this is someone you care about so much that you give of your time and energy each day. Every emotion is deeply felt. Spiritual care, whether religion plays a role or not, is essential too. While love motivates many like Sean, I’ve seen many caregivers respect love that was once there – in taking care of an ex-spouse, for instance – and empathize with those who are alone – in providing care to a neighbor who has no one else to count on.
My love this month goes out all the caregivers with incredibly different stories of why they do what they do and the amazing things they accomplish. Sean and all the other caregivers in your life and your community do it for love, for honor, for obligation, for duty. They make someone’s life better –overcoming hurdles and bearing hardship – each and every day. Our country and certainly our healthcare system couldn’t function without them.
This month, don’t be shy. Let people know if you are a caregiver and ask for the help you need or the respite you deserve. If you are not a caregiver, make it your mission to learn who around you is doing this important work. Acknowledge the caregivers you meet and offer support or respite if you can. Say thank you while you are at it… Care giving helps everyone, directly or indirectly.
Want to know more about care giving, the statistics I’ve quoted here, and resources for caregivers? Check out:
The CDC Family Caregiving: The Factshttp://www.cdc.gov/aging/caregiving/facts.htm
Who Are Family Caregivers from The American Psychological Association http://www.apa.org/pi/about/publications/caregivers/faq/statistics.aspx
Facts about the National Family Caregiver Support Program from the Administration on Aging http://www.aoa.gov/aoaroot/Press_Room/Products_Materials/fact/pdf/Natl_Family_Caregiver_Support.pdf
Caregiver Action Network http://caregiveraction.org/
Family Caregiver Alliance http://www.caregiver.org/caregiver/jsp/home.jsp
Are you a caregiver? Are you receiving care? I would love to hear about your experience and your reaction to this or any of my columns. Find my earlier columns by searching the internet for “kagan+myths+aging+calkins+media”. Email me at email@example.com and follow me on Twitter @SarahHKagan with your thoughts. Until next time, be well and stay active!
Dr. Sarah Kagan is a professor at the University of Pennsylvania School of Nursing where she specializes in geriatric issues and the care of older people. She is a visiting scholar at universities around the world and was awarded the John D. and Catherine T. MacArthur Fellowship for her work. Kagan lives in Philadelphia. Her column on aging myths appears in newspapers and on digital sites throughout Calkins Media Incorporated.