The (not-so-hidden) costs of caregiving

Leo Newhouse, LICSW
Leo Newhouse, LICSW, Contributor

Family caregiving is a huge topic nowadays. With over 75 million “baby boomers” poised to become the largest generation in American history to require such caregiving, how can it not be? Already, family members — people like you and me — provide $642 billion worth of unpaid care for our spouses, parents, and relatives each year. But what is the price we pay in terms of our personal well-being, physical and otherwise?

While caregiving has been shown to have benefits — it helps to build character, enrich one’s soul, and even ward off cognitive decline —its burdens can be just as significant, if not more so, as demonstrated by a new study published in a recent issue of The New England Journal of Medicine.

Realities of caregiving

Researchers at the University of Toronto followed a group of 280 caregivers of critically ill family members who had received seven or more days of mechanical ventilation (“breathing machine”) in the ICU for 12 months. The goal was to assess the impact of caregiving on the caregivers’ well-being and quality of life. The average age of caregivers in the study was 53; 70% of the caregivers were women, and 61% were caring for their spouse. Here’s what the study found:

  • More than half of caregivers had high levels of depression (67% were depressed at the start of the study, and 43% were depressed after one year of follow-up).
  • The depression decreased somewhat with time in 84% of the caregivers, but did not in 16%.
  • Caregivers who were younger, who had to give up regular activities for caregiving, and who had lost a sense of control over their lives tended to be worse off than the rest.

Notably, older caregivers were better off health-wise than younger caregivers, perhaps because they had more free time and faced fewer work-related pressures. Those who fared better also had higher income — so were likely able to afford more paid help and to take more time off work — and had better support from family, friends, and community.

One of the study’s most important findings is that caregivers of critically ill family members may still be at risk for clinical depression for months, if not years, after the crisis is over — and that this risk is higher for these caregivers than for most of us, including those who look after loved ones with chronic progressive illnesses such as Alzheimer’s disease. The study also notes that there is currently a lack of resources for caregivers.

Statistical data can hardly convey the anguish that many caregivers of critically ill patients face day-to-day: the anger, sadness, frustration, and loneliness of it all. And yet these are the feelings one hears about most often in the consulting room. Spouses may feel cheated out of their golden years and harbor resentment. (One client described caring for her husband with brain damage to be “as close to hell as it can get.”) Adult children can be in denial of a parent’s condition and blame the caregiving parent for not doing the “right thing,” or can sometimes expect the caregiver to be superhuman.

What caregivers can do to care for themselves

As medical science continues to make advances in prolonging the life span, more and more of us may find ourselves in the role of a family caregiver. The Toronto study reminds us that health crises may be unavoidable and that their effects can be profound. But there are strategies we can employ to mitigate their potential stresses and strains, such as:

  • Not doing it all alone. Get as much support as you can. Schedule a regular walk with a walking partner. Find a support group. Let friends and neighbors help out with cooking and errands.
  • Timely financial planning. Do not wait for a crisis to put your affairs in order.
  • Talking with our loved ones about their goals and wishes for care while they are still in good health, and drawing up “advance directive” documents that put these wishes in writing.
  • Last but not least, taking good care of ourselves, both physically and psychologically. Make sure you get enough sleep. Go to the gym. Take a yoga or meditation class.

As the Family Caregiver Alliance reminds us, when your needs are taken care of, the person you care for will benefit, too.

Comments:

  1. Sharon

    My heart goes out to you Alabama native. I cared for both my husband and mother at the same time. My husband passed and I am caring for my mother still at age 95 with dementia. She is now living in a long term care, but I am there to make sure she is being taken well care of. My two sisters live far so I have always been her caregiver. I do find it a privilege as Nancy said, my loving mother would do the same for me. Best wishes and best of luck to you Alabama. God bless!

  2. Veronica

    Here’s another take to spiral one into depression. When I was in my dark hours, I visited my spouse at his workplace (an academic) and I shared with him (a workaholic) my thoughts: “You know, darling, if something happened to you (he has a family history of heart disease that killed both grandfathers), the children and I would come in here, pack up your office, and look after you at home. you might get visitors for a month from work, but soon, your office space would be taken by someone else, and work would go on…” His reply: “Yes darling, and hopefully, if the same happened to you, I’d be making enough money to pay for a carer for you…” Can you imagine how I felt at that point, and how this very ‘statement’ precipitated me into the darkest night of my own soul, from which I was left to claw my own way back because there was no way he would step back from his work to look after his wife…I commend and deeply bless all of you who have made the ultimate sacrifice of one human being to another, in the name of love…Your pain and your suffering is not wasted on our human race. Your gift to our world priceless. Thank you from the bottom of my heart, for doing something not everyone has the strength, empathy or resolve to do… May we as a society find countless ways to support you. I, for one, am now moving into mental health practice, as a ‘survivor’, to create a new mid-life path that might make a difference in our world, because I don’t think anyone (on this planet of billions) should have to be abandoned by those closest and dearest… In sickness and in health… We give what we hope we will also get…That’s not bargaining…That’s just human decency…. Whatever your spiritual lens of life…. Thank you”!!!

  3. Jan

    The Well Spouse Association provides peer support to those caring for a chronically ill/disabled spouse or partner. We GET it, because we are all current or former spousal caregivers. Most of our members are 40 to 70, and trying to balance work, children, with a serious illness. It is nice to finally see a study that comes close to “telling it like it is”. When you become a caregiver to your former partner, there are a boatload of life changes to deal with, and basically, no help. Those whose spouses need full-time care and are on disability, usually don’t qualify for any social services due to having some income. There are many tragedies waiting to happen with sick people left to their own devices while the caregiver is at work to keep a roof over their heads and food on the table.

  4. Nancy

    I recently completed fourteen years of caregiving for both parents, one with alzheimers. I cannot stress how wearing it can be going it alone. Although they had two other daughters who were well able to contribute, they selfishly choose to leave the complete burden on me. Additionally, to escape criticism, they circulated rumors that I was not allowing them to help or visit and that I was stealing money, none of which were true. Family members need to remember that caregiving is an opportunity to repay parents for all of the care and concern they have given their children, not a time for petty games and quarrels. My parents deserved better from the daughters they raised. I have no regrets for having assisted them in their time of need. It was a privilege to have such exemplary parents and I miss them very much.

  5. Lee

    It’s easy to say “take care of yourself, go to the gym,” etc. but the reality for many caregivers is there is no time, no energy, no helpers, and no extra money.

    Many times the caregiver is a spouse who has health issues of their own. Often there is severe financial stress.

    I think most people can figure out these platitude-type suggestions on their own. What is needed is more social programs that provide real help.

    • Sofia Herrera

      Very well said. Succint and to the point.

      • Alabama native

        I am very aware of these suggestions because I been a caregiver for my wife now for Over twelve years. I see no relief in sight. One daughter is assisting me when I go to a convention every year for a week. I can retrieve my sanity for that period of time but age is catching up and physical disabilities (heart attacks, high blood pressure, diabetes, cancers, and auoaccident spinal cord injury and broken bones. When I asked for assistance the answer, “I just retired I want to live be my life”, go to Assisted Living housing, “I need to live my life and can not be tied down”. All the problems I did say or do when I had to take care of their ailing Grandparents. I had to do it and now, now…. No help, no hope.

  6. Sr. Geraldine Finan,SH (Gerry)

    As a nurse I speak with many caregivers who are overwhelmed. I find one resource for them that helps is a listening other. When trust is established,encouraging them to put their loved ones’ needs in order and supporting while is it in process ,especially the practical issues of their passing. Also it happens those who are dying need permission to die because they are more concerned about leaving their caregivers without their presence and tangible love.

  7. Cheryl

    Faith, you are so on point. Thank you for your notes. Me and my two sisters are in that anticipatory grief stage as we are all home while my mom has been hospitalized, sedated, and on a ventilator after two brain bleeds. We are in a sort of malaise. Having met with a palliative care team, we know what’s coming, but today, the Fourth of July, we sit at mom’s, frozen, watching tele afraid to go to the hospital for the inevitable next steps.

  8. Faith Teeple

    Caregivers of critically ill loved ones also suffer from “anticipatory grief.” This is another kind of depression which morphs and worsens, I think, when the loved one actually dies…..recognition of this kind of depression barely exists.
    We all know what we should do to help ourselves as caretakers. However, what caregivers also need is recognition and acceptance that depression in such circumstances is 100% understandable and they should not be made to feel guilty for not helping themselves more. We are so afraid of “death” in America that friends and family often distance themselves from the caretaker in subtle ways, either out of fear or not knowing how to “be there” for a caretaker….so often a caretaker is a very lonely person who keeps innermost thoughts and feelings to oneself instead of finding needed emotional support.

  9. Marcia Slatkin

    I cared for my mother, an Alzheimer’s patient with moderately severe disability, for four years ten years ago. I was compensated by her saving’s account ( $3000/ month), which allowed her to go to a senior Day-Care center in the area ( Suffolk County, NY) daily, and helped me financially. I had in youth had a difficult relationship with her, and miraculously found that these years
    where she “forgot” to be critical of me, and I was in control, allowed ME to heal.