My best friend from college and I use a term “the hard professor,” as shorthand for situations where our heroic efforts haven’t felt good enough. It comes from an analogy I created to make a point. It worked like this: If you were in a class with a professor who, in 20 years of teaching, had never given a grade higher than a “B” and you earned a “B+,” would you be mad at yourself for not getting an “A?”
I’ve learned that when you lose perspective about the value of your efforts, it’s always nice to have a friend point out that you are in the hard professor’s class.
Women need reminding often. Particularly when some accepted societal norm turns out to be kind of unreasonable. For example, I didn’t really question the craziness of locking myself in a closet at work 3 months post-partum to pump breast milk every 4 hours from 8 am to 6 pm. Until a European friend mentioned (gently) that she was on paid maternity leave until her son weaned a year after he was born, at which point he went into high-quality, free day care where she picked him up everyday at 4 pm. Hmph.
Ok then. So, take the crazy-making expectations of motherhood and ramp them up ten times and you have — the experience of daughterhood.
I was struck by the all-encompassing, unwinnable proposition that is parental care when I was reviewing research on what should be included in a “geriatric care plan.” This plan is basically a set of recommendations from an unbiased third party professional observer that outlines the scope of parental care for which you and your family are responsible.
This scope covers what I call the three pillars of parental care:
Pillar 1: Daily Personal Care
First and foremost, you need a plan for the services you’ll pay for or do (or other family or friends will do) that ensure your parent gets really basic needs met. This includes, for example, help walking, getting fed, dressed, bathed, on and off the toilet. In short, the most basic of activities that makes us human.
When frailty sets in, our ability to do these basic activities declines. Go into any nursing home and you’ll see the very end stage of that decline, with people unable to even sit up. This decline can happen quickly – after a stroke for example – or it can happen gradually…..starting with difficulty doing things like shopping, cooking, taking medication, managing finances, using a telephone, driving, taking care of a pet, taking care of the yard.
This is not a linear path, though. There is a new fragility to your parent’s life with much of their day-to-day functioning dependent on everything working correctly. It reminds me of a row of dominoes — one thing goes down and many other things follow. You are on a precipice waiting for the next bout of flu, stumble, or even a helpful neighbor moving away.
Dealing with the expected and unexpected, the day-to-day life of your parent and the constant changes in it — this is a big and complex part of your work.
Pillar 2: Health Care
Daily personal care is just one piece of the puzzle. On top of this is the health care and ensuing work that goes with managing an old body through the last stages of life. (The inspirational 90-year-old marathon runner or yogi is definitely an outlier.) Most people living into these decades have to contend with pretty complicated health issues associated with aging cells.
These health issues require an MD/MBA to manage. First, a typical 80-84 year-old will be on a regimen of at least 8 medications – mismanagement of which can result in all kinds of complications and horrors, including a visit to the hospital and ensuing chaos.
Aside from medicine management, a huge task lies in evaluating home safety, managing depression, keeping track of medical records, and watching out for or managing memory loss. Skilled geriatricians and enlightened primary care doctors who can help you with all of these issues are few and far between. Thus, physician interaction and management is yet another component that you will have to add to your responsibilities.
Finally, there’s a great deal more to say about our health care system, but I’ll just start with this: you have to remember that healthcare decisions made by hospitals and other providers can get distorted by their priorities which are often unrelated to what your parent most needs. For example, hospital discharge planners are often under more pressure to free up beds and get patients discharged quickly than to find the best time and place for patients to go. No pressure.
Pillar 3: Legal and Logistical Arrangements
But, as if that’s not enough, there’s a third category of work for you. Wha…? Yep, you, your parent and your other siblings, family, etc. all have to decide who controls money, who makes health care decisions, and what the health care decisions will be —- Ideally, IN ADVANCE OF HAVING TO MAKE THEM. Otherwise, some 30- year-old intern is going to break your 90-year-old mother’s ribs resuscitating her.
Moving On From Here
So, as you are sacrificing your sanity and life, just know that the three pillars of parental care represent one enormously complicated, even impossible, job. That’s why it gets the “very hard professor” classification. Your efforts are nothing short of heroic. It’s not possible to do it well. And, yet you will still feel terrible about it.
Of course your job would be easier if it we designed our health care, community, and societal systems to support the growing numbers of people living into their 80s and 90s. And, if we had a better, easier and less expensive way for everyone to buy insurance for the chance that they would one day need expensive daily personal care.
There are a few bright spots along these lines, which I’ll be writing more about, but one of my favorite trends is the movement towards aging-in-place villages or Naturally Occurring Retirement Communities (NORCs). I know “NORC” sounds like some kind of top secret defense program, but these are communities of older adults who are teaming up with each other to bring services and supports into their neighborhoods so that they can meet some of their needs and stay in their community and at home. You can read more about these in Jane Gross’ New York Times’ blog here.
What we really need is for our political and business leadership to Reimagine Aging in America and to get beyond the clichéd segregation of frail, older adults into facilities and compounds or isolated in their homes (or in your home!)….with only one or two adult children to meet a vast array of needs. Really. Isn’t this akin to asking parents in America to home school their kids?
This really has to be a priority soon because as more people cross the aged threshold, there will be relatively fewer of us to manage, pay for and do all of this work. A de facto delegation of society’s work to daughters and other caregivers IS NOT REASONABLE and will necessarily crack and strain other important parts of our social fabric.
While we are waiting for everyone to do exactly as I say, however, we can at least start sharing the burden with each other.
Comment here or at my website www.daughterhood.org and let me know about your experience. I’d love to hear from you about strategies or programs that you think other women could use. And, stay tuned for more information from me about what works and what doesn’t.