I’m Tired. I’m Just Really Tired

When Family Caregivers Are Not Supported

I was sitting in the dentist’s chair when my hygienist told me it was her mother’s birthday. She would have been turning 92 if she were alive. I told Rose I had just marked the six-year anniversary of my mom’s death. Because I’ve sat in her chair so many times over many years, Rose knew my story and remarked, “We are two lucky women to have had such wonderful moms who were lucky to have us as daughters.” I agreed. They, and we, were lucky.

Then Rose proceeded to report that a few days earlier her chair was occupied by a woman in her 70s who was recovering from total hip replacement surgery following a terrible fall.  The woman confessed to Rose, tearfully, that when she had called her daughter in Texas before being released from rehab to let her know she could probably use some help transitioning back into her home, the daughter’s response had been, “My puppy isn’t old enough to be left in a kennel.” 

After I confirmed that I had indeed heard her correctly, Rose and I just looked at each other, both of us silently imagining the poor mother’s anguish—and angst. How could any daughter be so uncaring?

Of course each caregiving situation is different and each family unique. Some mothers are grumpy rather than grateful, needy and demanding rather than giving.  Some people who need to be taken care of are so consumed with worry about their own plights that they don’t worry about the toll their loved ones are paying. Some daughters are simply incapable of thinking about caregiving as anything other than a burden or an imposition. Many families are dysfunctional, and there is strife about who does what and who isn’t doing enough.

Not every patient is as special as my mother was as a terminally ill 73-year-old. And not every caregiver is as fortunate as I was when I found myself unexpectedly thrust into a caregiving role.

At the time of my mother’s diagnosis, my youngest of three sons had just gone off to college, leaving me an empty nester. As an independent consultant with her own consulting practice, I was my own boss, so taking time off was not something I needed to negotiate or plead for. I was fortunate not to have to deal with a house full of young children and all the demands of parenting that go with them, or with an unsympathetic employer or an unsupportive spouse, or with the need to travel many miles and hours in order to be with my parents.  My husband was totally understanding and encouraged me to spend as much time with my parents as I wanted or needed to. I lived only a half hour away, so getting to them was no hassle. My three siblings did not live as close to my parents but were eager to help or relieve me and came as often as they could.

In short, the stars were aligned, and playing the caregiving role was manageable for me. For so many, it isn’t.

Recently I retrieved a voicemail message from a new client. Toward the end of it she said, “… And I’d also like to talk with you about your book, because it seems really relevant to me at this time in my life.” When I called her back, she explained to me that her father had died in April following a long and slow bout with dementia, and she thought my memoir about losing a parent and navigating through grief to gratitude might be comforting. Then she also told me she hadn’t had much time to grieve her father’s death since she is now caring for her mother, who is in the early stage of dementia. In the meantime she is also working full-time, a wife, and mother to a 13-year-old daughter who doesn’t notice when the dishwasher needs emptying. She went on to share some of the challenges she is facing and the emotions she is feeling. And then she finished by saying, in a tone that seemed both resigned and pleading, “I’m tired. I’m just really tired.”

She is not alone.  A March 2014 article entitled The Problem of Caregiver Burden, which I discovered posted on the Patient Page of the online version of the Journal of the American Medical Association (JAMA) when preparing to give a talk on caregiving, reported that:

Caregiving can be a 24-hour job without a break. In most cases, the caregiver is a friend or family member and therefore does not have formal training in caregiving. Up to 90% of adults needing long-term care at home are cared for by a family member. Sometimes, performing a large number of caregiver tasks leaves little time for the caregiver to tend to his or her own needs. Over time, this can have negative effects on the caregiver: socially, psychologically, and physically. This is known as “caregiver burden.” Sometimes, the caregiver becomes an “invisible patient” despite frequent interactions with the medical system, because the focus is always on the person being cared for.

A National Alliance for Caregiving and AARP joint research study conducted earlier this year found that more than 43 million people had served as unpaid caregivers during the prior 12 months, 85% of whom were caring for family members. How many of those caregivers are as exhausted as my client? How many are experiencing stress-related physical and emotional symptoms? How many feel guilty if or when they take time to address their own needs? How many feel resentment that they are not taking enough time to care for themselves?

Taking care of ourselves when we are in a caregiving mode is critical, not only for our own well-being but also, studies suggest, for the well-being of our loved ones.  When caregivers feel stress, guilt, and resentment, this does not translate into good care or positive outcomes for the loved ones being cared for.

From all I’ve read and heard, there seems to be growing consensus that the health care system, government policy, and employers in this country have largely ignored the needs – social, psychological, and physical—of caregivers. Countless people caring for loved ones are struggling, often silently, to meet their own basic needs and maintain quality of life for themselves. Dr. Susan Reinhard, senior vice president and director of the AARP Public Policy Institute, asserts that “to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are under served by the current long-term services and support system.”

Why should you care? Why is this a problem for all of us?

Former First Lady Rosalyn Carter once famously said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

That’s why