Opinion | Coach Coughlin and the Caregiver’s Love and Heartbreak

To the Editor:

Re “Watching My Wife Slip Away” (Opinion guest essay, Aug. 25):

Tom Coughlin’s achievements as a Super Bowl-winning football coach pale in light of his love, devotion and commitment to his wife, Judy. A disease so devastating, lasting for years, is a harrowing burden and challenge to those closest to the victim. Mr. Coughlin has expressed the anguish of those facing progressive supranuclear palsy and similar diseases in a loved one.

After several years of decline, my wife succumbed to P.S.P. I attended to her as best I could, but loss, grief, despair and bafflement built up. Mr. Coughlin has eloquently described the response of the closest loved one when such an inexplicable horror is visited on one’s companion.

Ed Quick
Lawrence, Kan.

To the Editor:

In his moving and all-too-familiar story, Tom Coughlin highlights the grief of losing the person you knew to cognitive and physical decline, as well as the isolation, sadness and anger caregivers often experience in this extremely difficult role. These emotions are normal and widespread.

Make no mistake, caregiving can be draining and take any joy out of life. But it can also be a deeply meaningful experience if caregivers get the support they need. With practical help (paid home care services, if one can afford them; assistance from family, friends and community organizations; creating a caregiver plan) and a safe place to express their anguish and frustration (private counseling, in-person and online support groups), caregivers can mitigate the struggle to care for their loved ones and themselves.

Ken D. Meeker
New York
The writer is a licensed counselor who specializes in serious illness, caregiving and grief.

To the Editor:

Thanks, Tom Coughlin. Your essay on being a caregiver was spot on. Nothing prepares a spouse to deal with a partner’s inability to communicate, the physical degeneration or the anger at the unfairness of it all. And, ultimately, the heartbreak at the inevitable. It’s a club no one wants to join.

John Lindsey
Babylon, N.Y.

To the Editor:

I read Tom Coughlin’s article thinking of myself. I am old (82), stooped from kyphosis (a curved spine) and live alone. So far, I manage for myself.

With modern medical attention, I’ve overcome a growing list of my body’s serious failures. Between today’s medicine and my penchant for independence, age has not yet delivered me permanently into the hands of caregivers.

Wielding a cane and towing a wheeled carry-on to ease the haul of groceries or additional clothes that weather has obliged me to peel off or later don, I deal with the world as best I can.

My life has made the choice for me. I will be alone. Perhaps I’ll reach a time when a paid stranger sees to my needs. I am both grateful and faintly sad that no loving spouse will care for me. But, thinking about being dependent, I’m mostly thankful that the end of my life won’t mean I inadvertently cause the suffering of someone for whom I had only wanted the best.

Douglas Chapman
Montreal

To the Editor:

When I read Tom Coughlin’s essay, I thought that I was looking into a mirror. My husband, Jack, received a diagnosis of progressive supranuclear palsy in May. It took a year and a half to get a diagnosis! At that point we were told that he was at the “moderately advanced stage” and to come back in six months. Since then, my family, friends and I have watched my husband slip away.

In my husband’s case, falls are the biggest problem. The falls have usually resulted in some injury, often to his head, cuts and abrasions, and multiple bruises, especially to his limbs. This has meant numerous trips to the emergency room.

We decided to place my husband in hospice care, which has been very beneficial for him and the rest of us. He now needs 24/7 care, and after a few months of trying to do that myself, we made the wrenching decision to place him in a nursing facility.

It is only a block from our home of 48 years, so I visit him every day. He is still falling, but not as frequently. He still believes that he can get out of bed by himself, but his body thinks otherwise.

Mr. Coughlin’s loving description of his wife helped me feel less alone in this experience of watching someone you love fade away.

Sandra Loman
Madison, Wis.

To the Editor:

In the midst of all the suffering being endured in our world today, Coach Tom Coughlin reminds us of the power of commitment and enduring love.

Thank you, Coach, for casting light on the reality of what love can do in the presence of suffering. Count on my prayers as you continue this journey with your beloved Judy.

(Sister) Arlene Flaherty
Blauvelt, N.Y.

To the Editor:

Slipping away can sometimes be a blessing. Diagnosed with Alzheimer’s, my Rosemarie has been slipping away for over 12 beautiful years, beautiful for her as well as for me.

Just as a child delights in each new moment, Rosemarie savors each moment as if it were new. Just as our 2-year-old granddaughter comes running to us exclaiming, “I saw a butterfly!” so, too, Rosemarie announces each day her exciting discovery of a robin, or a squirrel or a serpentine vine (though she no longer remembers what they are called).

Just as a child slowly learns gratitude for help and for life, Rosemarie thanks me again as we discover a new way I am able to help her.

We were unwittingly made ready for this graced time together in our marriage ceremony some 50 years ago. As we gave thanks for our many gifts, we said: “For our ignorance, which lets us wonder, we give thanks. For our forgetfulness, which lets us begin anew, we give thanks. For our weakness, which lets us depend on others, we give thanks.”

Richard Stith
Valparaiso, Ind.

To the Editor:

Tom Coughlin’s account of being the caregiver for his wife, who suffers from progressive supranuclear palsy (P.S.P.), is a sadly familiar one. Caregiving is physically, emotionally and financially draining with any disease. P.S.P. serves up additional challenges: Patients are often in the prime of middle age, with careers, family responsibilities and active personal lives. Their loss of gainful employment, and often the loss of income from a primary caregiver, compounds the financial devastation wrought by the disease.

The patient’s symptoms rapidly progress and are marked by catastrophic injuries from falls, impulsive behavior, emotional withdrawal from their loved ones, cognitive decline, and, soon enough, inability to perform basic bodily functions. P.S.P. is currently incurable and largely untreatable.

Professionals can offer essential support for family caregivers. However, our program that provides grants to pay for home help is now hampered by labor shortages.

As Americans seek new employment opportunities, this is a noble field providing essential service to families, like Mr. Coughlin’s, that are in dire need of respite from the depredations of diseases like P.S.P.

David Kemp
New York
The writer is president of CurePSP.

To the Editor:

Thank you to Tom Coughlin for his moving tribute to his wife and to caregiving. Yes, watching a loved one slip away breaks our hearts. For millions of Americans, it also breaks the bank. Lack of paid leave costs millions in jobs, billions in lost wages. The price to families? Incalculable.

“Don’t forget about the caregivers,” Coach Coughlin urges us. Congress has a historic opportunity to invest in care by passing comprehensive paid family and medical leave in the budget reconciliation bill. It’s time to care.

Ellen Bravo
Milwaukee
The writer is a co-founder and strategic adviser for Family Values @ Work, a national network working for paid leave and other care policies.

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