Periodically AARP surveys Americans on a number of subjects, including whether they want to “age in place”—that is, stay in their own homes as they age. While it varies a bit over time, the vast majority of Americans say they want to age in place. I find this vaguely disturbing for reasons that became clear to me last week. I was listening to Krista Tippett’s interview with Atul Gawande (physician and author of the phenomenal book Being Mortal: Medicine and What Matters in the End) on her “On Being” podcast (What Matters in the End). Dr. Gawande described how his paternal grandfather had lived in the family home in India, continuing to participate in family and community life, until his death at 108. Wow! Who wouldn’t want that? Then he goes on to explain that this was only possible because younger family members, particularly women, “were more or less enslaved to his needs”. This resonated deeply with me. Aging in place requires tremendous resources, usually in the form of sacrifices of women caregivers.
As Americans live longer, baby boomers are discovering the joys and burdens of caring for their declining parents. And, as Jane Gross points out in her excellent book A Bittersweet Season: Caring for Our Aging Parents—and Ourselves, even as we experience our own parents in decline, we continue to believe we ourselves will remain vital and then suddenly one night die in our sleep. This belief goes hand in hand with our desire to age in place. Why would I give up my home and independence to live in an institutional setting when I don’t need to? I’ll continue to be able to maintain the house, do my grocery shopping, mow the lawn, and get out to visit friends, see movies, go for hikes, eat in restaurants, just like I do right now, I’ll just have more time to do it once I retire. I will ignore the fact that it isn’t working that way for my parents and pretend that it’ll work this way for me. This is magical thinking! It’s like smokers believing that they won’t get lung cancer! Yes, there are people who can happily live alone in their own homes at very advanced ages…but there are more people who can’t. The San Francisco Bay Area Institute on Aging reports that, for people who live to be over 80:
29% will need assistance, and
56% will report being severely disabled
It isn’t just the very old. Between 65 and 74, 13% of men and 19% of women say they are unable to perform at least one activity of daily living: eating, bathing, dressing, toileting, transferring (getting in and out of bed or a chair without assistance) and maintaining continence. The data indicates that the majority of us will NOT be able to age in place without a very extensive care team.
Explicitly or implicitly, we are asked to keep a loved one “out of a nursing home”. We’ve heard the horror stories of inadequate care and low standards, maybe even spent a depressing hour visiting a resident (inmate?). No one wants to end up in one of these! But have you also witnessed the life toll that making such a promise takes?
My friend Jeanine’s mom never asked her to promise that she would keep her in her own home, but Mom’s wishes were clear. They both just assumed that Mom would continue to live alone in her own home. At the start, Jeanine would do the grocery shopping and heavier weekly cleaning and leave a meal or two in the freezer each week so Mom didn’t have to cook all of the time. Then she organized meals on wheels and prepared all of the other meals Mom would need, plus stopping by daily to see that Mom got her medications. She also did all of the house-cleaning, paid someone to take care of the yard, and started paying all of Mom’s bills. As Mom declined, both physically and mentally, she needed medication twice a day and to be bathed and dressed. She could still undress at night and remembered to go to bed, but she would call Jeanine many times during the day and night, confused and sometimes frightened. At this point, Mom hadn’t participated in anything social in years and was basically a shut-in. And Jeanine, with the support of her husband but no meaningful assistance from her siblings, was on the verge of a breakdown. She never had a day off cause there was no one else to take care of Mom. She hadn’t been out of town or on a vacation in close to a decade. The stress of an unrelenting list of caregiving tasks paired with watching her beloved Mom’s decline, with no light at the end of the tunnel, left Jeanine feeling suicidal. Yup, it’s a gift to have time with an elderly parent (or whomever it is you’re caring for)…but it is also the enslavement mentioned by Dr. Gawande.
Almost two decades ago, my own parents sold their small home (they had downsized 15 years earlier) and moved into a retirement community. They had modest means—Dad was a high school teacher and guidance counselor and Mom stayed home with us kids. Still, they were able to find a place they could afford in the area that was their home. Their apartment was small but had a great balcony and beautiful views. The common areas were attractive and the activities were frequent and varied.
My recollection is that this move was unprompted, but Ron has reminded me that I suggested that we together take a look at some of the retirement communities in their area. I do have distinct memories of their home falling into disrepair, needing cleaning and maintenance beyond their abilities as they aged. More and more days of the week they were eating fast food so they didn’t have to shop, cook, or clean-up. My siblings who lived closer were engrossed in their own growing families and careers and couldn’t take up the slack. When Ron and I made our annual visit from the Virgin Islands, we tried to check off as many tasks as we could. I’ll never forget taking my folks out to shop while Ron stayed behind to scrub the mold off of their windows and shower stall. They couldn’t see it and he didn’t want to humiliate my mom, who always kept her house immaculate, by making her aware of it.
Maybe I see the positives because it was my idea, but I do believe that my parents’ quality of life improved when they moved into a community setting. Mom still had her privacy to read and study undisturbed but enjoyed lunches and dinners in the communal dining room. They continued to have a quiet breakfast in their apartment while reading the morning newspaper. Dad loved all of the activities and played cards and pool and anything else the activities director dreamed up. He was part of the residents’ counsel and the welcome committee. Mom started a Bible Study in that first community that continues to this day. They still got out to church, to visit friends and family, and to see movies or shop. They ate better because they didn’t have to prepare meals to do so.
The fact, by the time they needed assisted living, they were already living in a retirement community that offered it, made the transition much, much easier! Several assisted livings later, my 97 year young widowed father continues to live as independently as possible because of the care available in his assisted living. Because it is the assisted living’s job to provide help with activities of daily living, Ron and I are freed to devote our caregiving energy to providing love, companionship and stimulating activities. We couldn’t do it all. If we were spending our days bathing, dressing, feeding, and keeping Dad clean, that’s all we would do and we’d struggle to get it done.
Do it for your loved ones, if not for yourself
By definition, you love your loved ones, right? Whether they are children, a spouse, a dear friend, do your loved ones a favor and come up with an acceptable alternate plan in case you do actually have a decline. A significant loss of cognitive function (dementia) or physical disability will preclude you from living independently. Have a plan for it, just in case. Your first step is to go out and learn about the care options in your current community. If they seem limited, consider care available anywhere you might happily live out your life. Whatever your financial circumstances, there will be options:
Help with activities of daily living
Meal preparation, light housekeeping and chores
Senior living communities
Continuing Care Retirement Communities (CCRCs)
Independent living facilities
Skilled nursing (aka long-term care or nursing homes)
Imagining our own decline doesn’t come close to making the list for our top 10 favorite activities. But some forethought and preparation increase the odds of greater happiness later on for ourselves and our loved ones. If we don’t prepare, care for baby boomers in the US is a train wreck in the making. Give me a call if you need some help planning for yourself or a family member (336-701-2612).
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