
The Three Pillars of Parental Care: Add Up to One Impossible Job
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.
I’m so very lucky that I happen to live in the same town as my 79 and 80 year old mother and father who have medical issues of varying complexities. They are so very lucky that we all live in a university town with a top-flight teaching hospital. We have some of the best medical care in the country right here. I’m so very lucky that my husband is employed full-time, allowing me to be employed part-time, and take care of my youngest child AND my aging parents. I do my parents meds, and volunteer my two adult children for things like Christmas decorating, furniture moving, technology assistance, and the like. I think I’m part of the “sandwich generation”. They are so very lucky that they can afford at-home care. They pay $21 per hour for 15-20 hours per week (CNA / PCA), and that’s not cheap! I am so very lucky that my husband and I were able to purchase a home with a ready-made “in-law” suite, on the off-chance that one of my parents will need it someday. They have a nice retirement, but the local retirement village is a minimum of $50k per year per person. The other good one in town is an “aging in place” facility, but it’s a great deal more expensive. Who has that kind of chump change? I still struggle with making sure they are well-fed. I have tried various things, but with my mother’s dietary issues, it’s challenging to say the least. Fortunately, my dad still drives – for now, so he runs out to restaurants. We also have a doorstep delivery in town – another benefit of a college town. He has a progressive neurological disease that will eventually see the end of his driving days. That’s gonna be fun. My warm thoughts and well-wishes go out to all of my “sisters”…
Hello Anne,
Yes, the pillars are heavy-lifting and truly impossible. If a parent also has chronic conditions, dementia in any form, or other issues, these pillars become heavier still. Even though I am an educated person, a “Gerontologist” in actual education and fact, the job of taking care of my parents feels like unresolved conflict. Even the most basic of social systems are broken; for example, good neighbors. People here in California are often stretched and stressed to pay their mortgage and bills, so much time is spent making a living and the quality of life for older adults resides very low on most people’s priority list. The Village model has gained traction and can work well; however, because there is cost associated with it, not all older adults have the benefit of the resources so it’s not a universal solution. In the United States the huge problem is the lack of a long-term care system. If we can stay in our home longer with in-home support, this reduces the strain on all social support systems. However, the cost of long-term care insurance is not affordable for the majority of the population. So those hard-working daughters strap those pillars onto their backs and slog forward. Often too, as the research on the costs of care giving show, these daughters lose substantial physical and financial health due to the stress and time it takes caring for our aging family. We need long-term care funded and smart legislation that addresses this giant rip in our social fabric. . . for the sake of our daughters.
A friend just forwarded this to me. THANK YOU! I am in the trenches, and you articulated my reality quite well. Favorite line: “Isn’t this akin to asking parents in America to home school their kids?” This has been one of the hardest years of my life, and anyone who knows me will tell you that’s saying something. (I won’t go into all of the details, but suffice it to say that daughterhood is up there with losing a husband of 25 years to mental illness and addiction.)
Another difficult component of daughterhood: this parent has been one of the most difficult relationships I’ve had on earth. And now I’m responsible to care for him in his most vulnerable state. I could go on and on, but I won’t. I finally hired a licensed clinical social worker to help with some of the doctor/facility communications, which has helped a lot in times of acute crisis. But the heaviness of my responsibility remains. I am FLOORED at how easy it is to fall through the geriatric cracks if you don’t have someone advocating for you. This does not consist of one or two phone calls. It involves perpetually engaging a system that is, for all practical purposes, falling down drunk.
As the previous commenter, Laurie, stated, I have lost severe financial and physical health as I’ve strapped the pillars on. I had to quit my job for about 10 months (I’m a self-employed writer/photographer, but still.) And I was diagnosed with yet another autoimmune illness along the way. When your hair is falling out, you’re breaking out in hives, can’t sleep and you ache like you have the flu all the time, you know you’re severely stressed.
I’ve found this season to be a very lonely one. I have accepted that my other two siblings cannot be as involved as I am (one lives 1500 miles away and the other has major work and family demands.) I have a very loving and supportive husband. But when things have gotten completely out of control I just want to TELL someone about the impossible details of the situation, of my day, and how that has made my life completely unmanageable. But trying to make someone who’s not IN it understand, even if they’re willing to listen, is a losing proposition. There’s no way to adequately convey what it’s like to live in this space. Short of one long time friend and a counselor, I have not found a way to talk to anyone about this without sounding like I’m constantly complaining. It’s a heavy burden, and when you try and share it, it just burdens others (and understandably so. There’s only so many times someone can listen to the intricate details of how completely crazy this odyssey is, even if they love you to pieces.) Catch-22 for sure.
Thanks for sharing your experiences and insights. I know of three families currently dealing with aging parents who are not yet facing the realities that life and their abilities have changed. Major challenges for everyone. Fortunately, the financial issues are not the primary concern right now.