Why Caregiving for a Spouse Is So Difficult
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Health

Why Caregiving Can Be a Killer

Here’s what I learned about staying healthy while taking care of my sick spouse.

Rose in vase next to another rose with fallen petals
Holly Andres

If you are a caregiver, AARP offers a wide range of resources for you.

I speak both from my heart and my blood pressure monitor when I say this: Caregiving can be a killer. There’s a mountain of studies that agree. The act of taking care of a seriously ill loved one puts you at a higher risk for diabetes, depression, stroke and, yes, death.

The National Institutes of Health reported that caregivers have a 63 percent higher mortality rate than non-caregivers, and Stanford University attributed stress as the reason why 40 percent of caregivers for those with Alzheimer’s disease die before their patients.

Here’s my story, interspersed with some caregiving tips to help you through what is, without much argument, likely to be the most difficult and miserable time of your life.

To start, let’s just say that my late husband wasn’t exactly the poster boy for healthy living. In fact, he probably never saw the inside of a gym until after his massive heart attack and seven-bypass surgery. At the time, he was 71, and I was 56. That “health scare” — as he called the nine-hour surgery when they sawed open his chest and harvested veins Lord knows where to construct new heart pathways — did manage to temporarily scare the living bejesus out of him. But rather quickly, he dumped the cardiac-gym membership his doctor had ordered and went straight back to his lifelong fondness for fast food.

As my husband grew sicker and still ignored the medical advice he got, I grew resentful and angry. When it came to taking care of his health, why was I the only one with an oar in the water? I quickly learned this is an oft-repeated caregiver refrain. Noncompliant patients will leave you frustrated, angry and hurt.

Caregiver tip: It’s OK to be angry at your loved one when their self-destructive behaviors wind up hurting you and others. I found support and room to vent in several private Facebook groups for caregivers. Caregivers Hub Support Group is a great place to start. There's also the AARP Family Caregivers Discussion Group on Facebook.

My husband spent the years following his heart surgery seeing doctors — lots and lots of doctors. His list of ailments grew steadily: type 2 diabetes, high cholesterol, hypertension, more heart issues, sleep apnea, constant fatigue, frequent dizzy spells, arthritis, bad circulation, prostate problems. Me? I managed to miss my own routine checkups, even forgoing getting my flu shots and having my teeth cleaned.

Caregiver tip: Don’t do what I did. In my case, neglecting my own health during this time of unimaginable stress left me with untreated high blood pressure, significant weight gain, depression and sleep issues. Schedule yourself for the care you need.

Truth be told, I became a widow long before my husband’s last breath. I lost him in small pieces over 18 months as my role as his wife faded away and I went from being his life partner to his full-time medical case manager and hands-on caregiver.

So, what exactly did I do for him? Everything — I did everything. I helped him with toileting, bathing, dressing, standing up, sitting down and walking. I cleaned him up after his accidents and his falls, changed his bags and his tubes, and tested his blood. I drove him to doctors, medical tests and kidney dialysis three times a week, at a place that was an hour from home. I spent hours each day raging at the insurance company, nursing home administrators, hospital billing and records clerks, and anybody else who would listen.

And at the same time, I worked full-time, had two kids at home who still needed their mother, paid all the bills, got the groceries, prepared the meals and did the laundry. Add in the frequent unscheduled trips to urgent care or the ER and the intermittent hospital stays where I slept (not really) next to him upright in a chair, and you quickly understand how family caregivers are the greatest unpaid labor force in the country. They provide the equivalent of $470 billion in unpaid assistance, according to the AARP Public Policy Institute.

Caregiver tip: Friends and family members will want you to keep them updated. Mostly what you don’t have is time, and certainly not time to keep people “in the loop.” Use one of those free group-messaging apps or sites like CaringBridge.org to reach all concerned parties at once.

Yes, of course many friends and relatives will offer help. Frequently, it was what I came to call conditional offers. One friend repeatedly offered to cook us meals — but only if I could come and fetch them, because she didn’t like sitting in rush-hour traffic. Another promised to drive my husband to dialysis but didn’t want to park and escort him inside.

I came to understand that conditional offers are not really offers at all. They are attempts to get humanity credits for appearing to be thoughtful.

Caregiver tip: People may need to be taught how to help you. Be blunt. Be clear. Don’t worry about sounding ungrateful for offers that are conditioned on someone else’s needs.

My caregiving stint ended when my patient died. Sooner or later, the patient always dies. When he passed, I felt a mix of grief, relief and rage at organized medicine for turning his death into a torturous experience in an unrealistic quest to heal him. At one point when he was in the ICU, I was convinced that my husband and I were the only two people in the room who knew he was dying.

Caregiver tip: Anecdotally speaking, the only surefire way to avoid excessive medical intervention is to avoid seeing doctors and going to the hospital. Short of that, everyone is urged to have an advanced medical directive. You can download your free state forms online.

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