How to Be a Loving Advocate for Your Parents
It’s a delicate balance between being overbearing and dangerously disconnected
Suzanne Gerber is the editor of the Living & Learning channel for Next Avenue. Follow Suzanne on Twitter @gerbersuzanne.
On Tuesday, I spent the entire day accompanying my 83-year-old mother to three doctor appointments, a lab for blood work and her pharmacy to drop off four new prescriptions. (Relatively speaking, though, she’s pretty healthy.)
It was a long and frustrating day, but it revealed so many important things and got me thinking about the larger issue of “best practices” when it comes to being supportive of and an advocate for our aging parents.
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At the Extreme 'Do No Harm' End of the Spectrum
I have a good friend from a traditional Southern family. He has two younger brothers, in their mid-50s. Their father was the uber-traditional dad, who took care of everything, and their homemaker mother was, from all accounts, a terrific mom. His father suffered from a number of serious physical ailments, but right until the end had a mind like a laser. On the other hand, it has been clear for the past several years that my friend's mother has some form of progressive dementia.
When his father died a little over a year ago, my friend stepped in to oversee a number of matters: home health aides, finances, the house, etc. But he and his brothers would never discuss their mother’s medical condition with her. At 88, she needs a cane or walker to keep steady — but won’t use them, nor wear her emergency alert pendant — and she should have at least tried one of the Alzheimer’s drugs, but wouldn't. There have been clear indications that the health care workers were bilking them, as well as a number of other disturbing occurrences.
But the three sons continued to act like ostriches, and when I would try to broach the subject with my friend, this 62-year-old former hospital executive would simply reply, “In our family, we respect the wishes of our parents.” My counterargument — that when a parent has dementia, by definition he or she can no longer make smart decisions for themselves — nevertheless fell on deaf ears. This is something he knew all too well because he had been close to my dad.
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How to Be Helpful and Respectful
Mea culpa: I am very good in the “helpful” department, but know I am not always as respectful as I should be. (I’m working on it.) Throughout the aughts, I watched Alzheimer's turn my super-sharp father into someone who looked like my dad but so wasn’t. By the time he died three and a half years ago, I had already been in mourning for a decade.
As the first-born child (and an undeniable Type Double-A personality), I started taking over big things for my mother when my father was still in the nursing home. She had never had to manage nitty-gritty details of home and car maintenance, let alone finances or the labyrinthine behemoth that is managed medical care. My guiding philosophy was “do as little yet as much as necessary.” And for a while, it seemed like things were chugging along smoothly.
Until they weren’t.
The first thing that I noticed, on a fluke, was some — I hesitate to say “fraud” so I’ll just call it serious monkey business. I assumed my father had been making wise and prudent decisions (as a usually wise and prudent man), but in the months before he died, a number of deeply disturbing things came to light. As it turned out, a longtime trusted adviser was, as I dubbed him, a mini-Madoff.
Over the ensuing years, so many distressing things have come to light and I kick myself for not being more involved. But respecting my elders held me back.
My mother lives in Florida and I’m in New York, which isn’t an insurmountable distance, but it adds an extra layer of challenge to the oversight process. Now I fly down every other month, have hired someone we know well and trust implicitly to come in once a week, and my sister is stepping up after years of assuming all was well enough and that I could handle the work. But the things I have learned from this experience — and continue to realize on a weekly basis — have inspired me to try to inspire others to get a bit more involved with their parents before it’s too late.
This dance will be different in each family, as it should be, but I believe there are a few general things we should do — to whatever degree is appropriate. But “appropriateness” is an ever-sliding scale, and we must stay observant (and some of us need to get a little better in the “tough love” department). Because the life we save may be our parent's.
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What to Watch For With Your Aging Parents
I am not advocating becoming overbearing or starting a conflict, but I strongly believe that certain topics should be broached early on. If nothing else, it breaks the ice for conversations we’ll have to have later in the game, plus it gives our parents a chance to slowly come to terms with how much that game is indeed changing.
1. Health First on the list because it is truly the most important thing. It’s also the area where our parents are likely to be the most cagey. What worked for me was (years ago) letting my mother know I wanted to be able to help her if and when the time came. We started by making sure my name and my sister's were on all her medical privacy forms. (That's important so everyone realizes there is total family transparency.) Then I asked for a list of the names and the phone numbers of my mother's doctors. Slowly, over the years when I was visiting her, I’d accompany my mother on the appointments and develop my own relationship with her physicians (and their staffs — those are the people you really need to know).
I made a list of all her meds (names, doses, time of day she takes them and a physical description of each should she grow more forgetful or have problems processing complicated drug names). Two copies are in her home (the cabinet where the bottles of drugs are kept and on the bottom of her weekly dispenser), plus she and I each have a copy in our wallets, and I update all the doctors every time something changes.
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It used to be easy for her to organize her meds, then as she started taking more it got a little harder, and now it’s close to overwhelming. The point is: There’s not going be a clear dividing line between being capable and not; it’s a very gentle slope, and we need to get smart systems in place before disaster strikes.
Over the years, my relationships with her doctors have deepened, and they know they can trust me — more important than ever now that my mother’s memory and cognitive skills have declined. People typically can’t see how much they’ve slipped, and Tuesday’s appointments made clear how necessary it was for me to be there. She understood little of what the doctors were saying. And we’re not talking minor stuff. We discussed whether or not to have radiation therapy, what blood in urine might mean and whether new drugs were good options for her or if they were contraindicated. (Dismally, there’s still no central database for vital medical records.)
2. Finances Very tricky, yet not an impossible hurdle. Each family will need to find its own way into this discussion, but sometimes a simple statement like this can open the door: “Mom, Dad, I respect you and your wishes, but lately I’ve been hearing and reading stories about older parents — smart people! — getting into trouble with their money. You’ve worked so hard to save and prepare for a good life, and it would kill me to see anything bad happen. I want you to know I’m here to help in any way I can. And from what I’ve been reading, the sooner we start having the conversation, the better, and easier, it’ll be.”
We take for granted that they’re functioning safely and effectively in their lives, but it can be shocking to see what’s not working well. Are they paying their bills on time? (In the past year alone, my mother has made multiple payments to the same vendor and missed two payments in one year on her supplemental health insurance, and the company canceled her policy. It was a major ordeal to get it reinstated, and if I hadn’t, the consequences would have been dire. Her medical expenses since then have been well over $150,000.)
3. Personal Issues It also came as a surprise to discover that my mother has lost her sense of smell. This is natural as people age but can also be a symptom of early-stage Alzheimer’s. Smell might not seem like a big deal, but it dawned on me that she wouldn’t know if something was burning in the house. And that realization led to an even scarier one: She didn’t have smoke detectors in her condo!
After we got them installed, I went out on a limb and said this was the time for grab bars in the bathroom, which she had protested for years, for aesthetic reasons and because she was in denial that she needed them. (Now that she has them, of course, she’s thrilled.) Then I started literally sniffing around the place, and discovered some horrible scents under sinks and in drawers that hadn’t been cleaned in ages. A little odor won’t harm her, but the mold and mildew I found in her storage room had to be eradicated.
Once you break the ice on these biggies and get your beloved parent onboard with the “new world order,” I recommend you keep going — slowly, gently and respectfully. No one wants their life taken over, so baby steps are the way to go. And how appropriate is that, since these are the people who helped us take our very first ones.