The Hard Truth About Caregiving You Should Know

Now I know what 'through sickness and health' really means.

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When my husband was diagnosed with a rare neurological disorder, Progressive Supranuclear Palsy (PSP), our retirement years were circumscribed by my intense caregiving. It was stressful, exhausting, enraging and heartbreaking.

Is this what I signed up for when the captivating man with the strong, broad shoulders and teasing brown eyes asked me to share his life with him? Well, yes — but let’s say that I wish the “through sickness and health” part of our life together hadn’t in the end involved so much grief and suffering for both of us.

It’s excruciating to watch a loved one gradually lose motor function and the ability to communicate while remaining cognitively intact and fully aware of the tragic consequences of a disease — this, while doing the hard work of round-the-clock nursing.

I loved my husband and cared deeply about keeping him safe and comfortable, but assisting him nonstop was overwhelming.

Tempers flared as our roles reversed, adding to the stress. Sharp words. Accusations. Anger and frustration followed by long, sullen silences became unbearable.

I soon realized that managing the demands of caregiving while also caring for my own physical and mental health meant first acknowledging the hard reality of the struggle and then reaching out to others for respite and a safe place to howl and vent the turmoil raging inside me.

According to a report by AARP and the National Alliance for Caregiving, one in four Americans provide ongoing, complex care — and most of them are women, who then suffer financial strain, isolation and poor health themselves. I could not have dealt with my own stress and isolation without the friendship of women I met in a support group. Mari, Louise and Janet became my confidants, providing a safe refuge where I could divulge personal matters I wasn’t comfortable sharing with friends and family.

Mari and I would send each other quick text messages to meet for coffee, our schedules too unreliable to book lunch dates. Both of us tense and anxious, our eyes on our watches, we’d stuff ourselves with caffeine and baked goods while confiding everything too hard to tell anyone else – such as:

“Sometimes I just scream, ‘Stop, damn it!’ when one more thing spills or breaks. It’s not his fault, but I can’t help myself — and I’m always apologizing.”

“I’m on pins and needles every waking hour, wondering what will happen next.”

“I’m awake for hours, too tense to sleep — then I snap at him and feel awful. What’s wrong with me?”

After carbo-loading and venting about feeling resentful, overreacting to minor mishaps, hollering at the very people we were caring for and coming clean about hitting the wine bottle out of sheer frustration, Mari and I hugged and hurried back home, both of us vowing to be more patient and loving.

The most challenging aspect of being a caregiver is the emotional and physical exhaustion that leads to guilt, burnout, chronic fatigue — and the risk of making serious mistakes while functioning on groggy autopilot. 

One morning, in my addled, sleep-deprived state, I unwittingly gave my husband my vitamins and consumed a toxic cocktail of his medications. I managed to upchuck the bulk of pills before they could be digested, but I felt loopy and nauseated.

“Now you know how I feel,” my husband said.

I managed a thin smile, greatly relieved that I was bearing the brunt for my severe lapse, not him.

I quickly texted Louise, a nurse who was caring for her husband with advanced Lewy Body Dementia. She reassured me that I wasn’t on death’s doorstep, then insisted we meet to “walk off the drugs.”

“Just wait until you accidentally leave your car running all night, like I did!” she laughed, when I joined her for a hike in the hills. Swinging my arms freely and filling my lungs with fresh air helped release bottled-up emotions.

I tearfully admitted how much I regretted having to turn down acting jobs. I hadn’t recognized the consequences of relinquishing work that was central to my sense of self-worth and accomplishment. I felt guilty even harboring such feelings in the face of my husband’s illness.

Louise encouraged me to hire home help, pointing out that my earnings would offset expenses. Knowing I could go back to doing work I loved made a huge difference in my outlook.

While my husband accepted occasional outside caregivers, that was not the case with Janet’s husband, who had Frontotemporal Dementia (FTD) and was confined to a wheelchair. Janet was undergoing chemo for breast cancer while caring for her husband, who was unwilling to be looked after by anyone other than her.

The strain was evident when Janet and I met for coffee in her kitchen. She was overburdened, her own health compromised by debilitating fatigue and other side effects of her treatment. I lent an ear, offering support and encouraging her to accept offers to drive her to chemo sessions, run errands and deliver meals when she wasn’t up to cooking.

Janet’s death the following year, months before her husband’s, was grim confirmation of a Stanford Medicine study that found caregiving, particularly for dementia patients, can profoundly damage an overstressed primary caregiver’s health, with 40% dying before the patient. 

There are medical questions one should pose to a doctor, but the straight dope on caregiving issues can only come from firsthand knowledge as a caregiver. There’s not much a caregiver hasn’t seen, done or learned to handle. Together we offer each other support, and a safe place to share experiences only other caregivers understand and appreciate.

If you're a caregiver, you might consider joining AARP's closed Facebook group, AARP Family Caregivers Discussion Group.

Kathryn Leigh Scott is an author and actress who has written a trilogy of books on caregiving: Now With You, Now Without, The Happy Hours and A Welcome Respite, and the novels September Girl, Jinxed, Down and Out in Beverly Heels and Dark Passages. Other nonfiction includes the Lobby Card books on film art, Last Dance at the Savoy and The Bunny Years. She began her acting career playing Maggie Evans/Josette DuPres in the original Dark Shadows, and is still a working actress. Follow her on facebook.com/kathrynleighscott and kathrynleighscott.com.