My older sister made that blunt statement on several occasions. I recall, in the way siblings react as the years of a family become decades, that I mostly ignored her. Maybe once or twice I muttered a reply, a weak disagreement. Why argue who’s right or who’s wrong when we were all, each in our own way, struggling to make sense of a senseless experience?
Our father’s slip-slide into dementia had put a huge burden of caregiving onto our mother. Though her situation (slightly) improved when he was placed in a memory care facility, the emotional, spiritual, financial, and physical costs to Mom were relentless.
She took her wedding vow seriously: for better, for worse; in sickness and health.
Was Dad “killing” her? Was she unfairly wearing out because of the commitment to help her sick, aging, stubborn—and yes, beloved—husband?
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When Mom and Dad were younger, they had a plan for the so-called golden years: live in the house they’d lovingly built into a home until both died in their sleep and then be quietly buried in cemetery plots purchased (and paid off) in the mid-1960s.
Except there was a decade’s difference in their ages. That didn’t matter much when they were raising their kids. It did when Dad could count more than eighty candles on his birthday cake.
Except there were inevitable illnesses, injuries, and the downward spiral of the aging body.
Except . . .
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I’ve heard many say the hardest job is being a parent. Though not a parent, I’d never argue that claim.
However, caregiving may vie with parenting for top billing. According to the Family Caregiver Alliance, as many as 43,000,000 Americans are providing care to a child or adult. Though some receive wages from programs like In-Home Supportive Services (like California’s IHHS version), the staggering number of hours devoted to caring for a family member means that even those earning a “salary” are the proverbial overworked and underpaid.
Most care for a family member because of love. Guilt, obligation, geographic proximity, and cultural/ethic traditions can also be added to the mix of influences.
Here’s an incomplete list of the reality facing caregivers:
- Often “on call” 24/7.
- Can be resistant to assistance: 1) No one can do it like they can; 2) They are stubborn; 3) Others helping causes more hassles; 4) All 3.
- Don’t take vacations.
- Forced to become knowledgeable about cancer or dementia or heart disease or whatever ailment(s) their loved one has so that they can understand what to do or not to do as the disease progresses.
- Makes sure a loved one eats healthy while neglecting their own diets.
- Would benefit from support groups—for learning and companionship—but who has time for a group?
- Sleep poorly. Or not at all.
- May feel good about their months (and years) of support, but also have anguished memories of the dying. They witnessed a vibrant person become an invalid (or worse).
- After the lengthy time of supporting a dying family member, the “former” caregiver now wonders what to do with her or his life.
- In spite of their best efforts, and the praise of trusted people, they often blame themselves for what they shoulda/coulda done to add more time to a beloved’s final weeks.
Is parenting the toughest job in the world? Sure.
Is caregiving number two? Or might there be a weary tie for first?
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I’ve led grief support groups where someone with a spouse who died suddenly (perhaps a traffic accident on the way to work) is sitting beside a participant that did caregiving for years. Both are grieving a spouse, longing to return to the “old days,” and worried that the unsettled emotions felt every day will never go away.
And yet they are so different.
One barely kissed the check of her beloved, and then went back to fixing school lunches for the kids and not having time to iron a blouse before heading off to her office. Later in the day, the police arrived with the worst news of her life. Her world, so boring and normal, changed the second an officer said, “We are so sorry for your loss . . .”
The other—after years of grueling effort, of changing adult diapers and sorting pills in containers and heading to the emergency room so often that a “go-bag” was prepared for the endless visits—can’t recall anything resembling “normal.” The demands of caregiving were like paving a parking lot over all of his best memories.
Now, you see, in a grief support group, these two wounded, beautiful, kind people sit next to each other and eventually listen to each other’s stories.
One learns the other will never fix another peanut butter and strawberry jam sandwich because that is what they were doing that led to a peck on the cheek rather than a passionate kiss on what became the last day of a husband’s life.
One learns that the other knows he has knee problems. A trip to the orthopedic surgeon should have happened last year, but he didn’t go then because he was caring for his dying wife. And now he resists seeing the doctor because, well, he has been in so many medical offices that he can’t stand the thought of another visit.
And here’s the worst, and the truth, and the inexplicable reality that each one now lives with: envying the other. One wishes his spouse never suffered and had died quickly. One would sacrifice an arm and a leg to care for their spouse and to be able to share a real goodbye.
Caregiving is impossibly hard. Grieving is impossibly hard.
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Truthfully, I think my sister was correct. I think, as hindsight shakes its head and slumps its shoulders, that caring for Dad took literal years off of Mom’s life.
But this is also the truth: Mom would not have wanted to do anything different.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by