Larry Perlstein: What Caregiving Means To Me — And You

Today is National Caregivers Day.

A caregiver is an unpaid individual — usually a spouse, partner, family member, friend or neighbor — who assists others with daily living and/or medical tasks.

Westporter Larry Perlstein’s life changed dramatically 3 years ago, when his wife Jacquie had a major stroke. She was 49 years old.

Remarkably, she survived. But she remains significantly disabled. The stroke affected speech and motor control centers. In today’s guest post, Larry raises awareness of the extent of informal caregiving here, and how to acknowledge and support these individuals.

February 21 is National Caregivers Day. I’m not sure how to feel about it since this is a group I never intended to be part of, at least not for the long term.

Sure, I helped take care of my parents in the decade before they passed, as many of us have or will. But now I’m caring for my wife of 13 years, who (hopefully) has decades of life ahead of her.

Larry Perlstein and his wife Jacquie.

In talking about caregivers, most people think of the elderly. There were 40.4 million such caregivers in 2018, and most support and advocacy organizations such as AARP focus on this group.

Importantly, a growing category of caregivers cares for a chronically ill or disabled non-elderly spouse or child. These scenarios are different, because that care can persist for the entirety of the “patient’s” life.

The National Alliance for Caregiving estimates this group could be as large as 25 million people.

Overall, 1 in 5 American adults act as family caregivers.

When a disability is caused by an accident or act of god, the situation often receives news coverage, followed by an outpouring of community support. After the notoriety dies down the situation continues, forgotten.

Over the past 3 years I’ve found many instances of caregiving that go unnoticed from the onset (aside from family and close friends). The family feels uncomfortable about being too public, or lacks the energy or knowledge to reach out for help.

These situations may be all around you. I encourage you to recognize the extended nature of these cases. It’s never too late to offer help or support. When in doubt about what to do, just ask.

Jacquie spends a great deal of time doing physical therapy. This is at Norwalk Hospital Outpatient Rehabilitation.

For example, a local couple in their 40s with 3 school-aged children found themselves in a situation where the main income earner was unable to work. Two years ago he suddenly developed an extremely rare condition, New Daily Persistent Headache.

His spouse now maintains the household, searches for management and resolution of her husband’s condition, cares for the children, and supplements his lost income. Barring a diagnostic breakthrough, this reality is their new normal.

Another family with 3 teens is dealing with the sudden paralysis of their 16-year-old son, from surgery to correct a chronic neurological problem. The father — a truck driver — risks losing his job because of family demands. He is focused on finding a stable, better paying position.

The mother must deal with the needs of her 3 sons, navigating the healthcare system while staving off potential bankruptcy.

Thirteen years ago, at age 66, a husband started developing symptoms of dementia. For that long his spouse, now married 54 years, has cared for him. His decline from an avid tennis player to someone who must be showered, fed, and requires constant care exacts a toll on his spouse and supportive family that few can relate to.

As she deals with her own increasing age she continues to find the energy to battle the healthcare system, manage the family finances, help other caregivers in the community, and find support wherever she can.

In my own case, my family is making the transition from hoping for a complete recovery to recognizing that my wife will require assistance throughout her life.

Jacquie with her daughter Avery, father and 100-year-old grandmother.

Finding supplemental help is difficult and prohibitively expensive. With the assistance of family and friends, I act as her primary caregiver while raising our 12-year-old daughter.

This is important work, and I will do it for as long as I can. But as I age — I’m now 62 — I can only hope that more affordable long-term care support options become available beyond traditional nursing homes.

Ultimately, our long-term care issues will fall to our children if we don’t have a better plan.

The moral of this story is that there are informal caregivers all around us. They need hugs, education, financial support, and medical and insurance systems that acknowledge and support their role. They need to become “formal” caregivers.

We all must be sensitive to the continuing nature of these situations, and recognize that the toughest times are not necessarily right after the event but 1, 2 or more years later when all the attention is gone.

For more information about caregiving in Connecticut, visit the Family Caregiver Alliance website.

Larry writes a blog, Caring for a Spouse, that examines caregiving from a male perspective. The family is assisted by friends and family donations to a GoFundMe campaign that assists with continuing rehabilitation therapy expenses.