Guest blog by Jennifer Reeves, writer and Ombudsman. Jennifer is based in Colorado.
"But I promised her I would never put her in a nursing home."
The statement lingers over the phone line in an exhale, and I give the caller a minute to pause – to realize they’ve been holding their breath while they told their story, explaining how it’s come to this.
That's the easy part for most of us to understand, even professionals. Nursing homes, so often synonymous with the specter of our own mortality, represent the forgotten and abandoned who were unlucky enough to get old without dedicated, loving caregivers -- or so the collective culture might have us believe. Then there is the notion that moving a spouse, parent, or friend into a nursing home is equivalent to an abandonment of some sworn duty, whether that duty was clearly identified, intimated, or inferred in one's own house and family culture.
And while we're piling on the guilt here, has anyone pointed out the selfish act of breaking the promise? Surely you can keep up with the 24/7 caregiving if you love enough, know enough, are enough. At least that’s what’s implied. And I take these phone calls every week in my role as a long-term care Ombudsman.
Ombudsmen go into assisted living and nursing homes as advocates to ensure that those living there know their rights and are heard. We help residents and their families, their friends, because to some extent when you have a disability and need 24/7 care, it is a closed system – sometimes figuratively, sometimes literally. That’s part of what makes these decisions scary, sad and all-consuming.
It takes guts to reach out to a stranger and risk judgment, to be vulnerable – to reveal that the promise must be broken after all. I am always mindful of this when someone calls me.
As I am collecting more information, my caller reveals a self-identified compromise.
"But what about assisted living instead? I don't really think she needs a nursing home, anyway."
Invariably, I am asked about a new assisted living that is just down the road from the caller’s home.
“The location is perfect,” she continues. “Because then I can visit every day. I don’t drive at night any more, you see. I even saw a Town Car in the drive that takes the residents to their appointments, and she would just love that!”
The caller understandably wants to place her loved one in a well-appointed setting that is just right -- reflective, perhaps, of her family member’s own ideals or standard of living. The conviction may falter when I ask how payment will be arranged. The assisted living on the caller’s mind only accepts private pay residents.
“Well, she has plenty in savings.”
Enough to cover the monthly room and board -- often starting at a few thousand dollars -- plus additional costs for “extra” care and services, also billed monthly?
“Gosh,” the caller sighs. “I was thinking she would have more than a few months of funds.”
As we talk, I inquire about the care her loved one needs: “What help does she need with her activities of daily living, or ADLs?” Activities of daily living being the things we often take for granted as hallmarks of independence, like bathing, dressing, using a toilet, and feeding ourselves.
“Well, she needs help to dress and use the bathroom. She has accidents more often, it seems.”
I mention that some assisted living homes are willing to accommodate those who need frequent incontinence assistance, and some are not. In between are the assisted living homes who say they can do everything, forever. Though times and the long-term care industry are certainly changing, assisted living is designed to provide assistance -- not the more robust 24/7 care, supervision, and medical oversight that some callers are seeking for their family or friends.
I ask if there have been any recent doctor visits. Specifically, has a medical professional been asked for their recommendation? “Well, it’s been very hard to get her to the doctor for some time...Is that important?” I relate that it’s generally good practice to have a physician make a recommendation for some level of care on the person’s behalf. If an assisted living or nursing home doesn’t ask for verification of this recommendation -- like a doctor’s order -- there could be questionable admission practices.
With this question, there is a very long pause as it hits my caller that Option B -- which she thought solved everything by being a compromise to Option A’s 24/7 care -- suddenly becomes multiple options and complicates the promise even more. Never-mind that there’s also the possibility that Option B cannot meet the needs of her loved one….which would put us back to Option A but first, because this is how hard these decisions are, we go through Options C through J, maybe through M, to be sure we haven’t missed anything. Because part of this is doing our due diligence, especially when keeping a promise to a loved one begins to look different.
What if the promise, ultimately, is to know our options, rights, and own our power as informed caregivers? To be able to tell our mother, our spouse, or our friend, “I promise that, when the time comes for me to ask for help, I will ask every question I can, and find the best care I can for you. For us.”
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If you’re in the process of making the difficult decision about the next level of care for a loved one, call the Long-Term Care Ombudsman in your state or county. They can walk you through things to consider and what is available in your area. Ombudsmen are an objective source of information as well as advocates for those living in long-term care communities.*
How to Find a Long-Term Care Ombudsman Program: theconsumervoice.org/get_help
*Long-Term Care Ombudsman Programs are funded by the Older Americans Act through the Administration for Community Living.
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Western Care Partners guides families through the maze of services and supports that come with assisting a loved one who is getting older. We explain resources, facilitate family conversations and provide guidance through the difficult situations that come up when someone needs more help. Contact us for more information: 720-675-9902 or www.westerncarepartners.com.
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