You Are Not Alone

Well, hello everyone. It’s been a while since my last post – things are mostly on an even keel with Dad. So, aside from my daily visit to his nursing home (and check-in with the staff), I haven’t had any major issues to vent about here. Plus, I’ve been underwater with work (and Dad’s Medicaid application), so this blog kind of got pushed aside.

Despite the work, I have had some time for reflection as my life has settled itself down into a new pattern. This has been spurred in part by the work I’ve done rearranging the house to turn Dad’s old room into a TV room. It’s something I’d been thinking about for a few months, but it felt somehow disloyal to so obviously recognize the fact that he won’t be coming home, again. I even gave away his bed – the two twins I have in my little guest room work better than his queen bed would, and I have friends who could make good use of it. The newly redecorated den has become the most-used room in the house (with the added benefit that the living room now only needs an occasional vacuuming to stay in visit-ready order).

Sorting through Dad’s belongings – all the old photos and knickknacks crammed on his dresser top and nightstand shelves – has raised a lot of memories, impressions of his life as a golfer, a Marine Corps vet, a St. Louisan and a St.Louis Cardinals fan. I also spent a morning reading through this blog from beginning to end, which brought up another, more specific set of memories.

It’s just three weeks shy of three years ago that I started chronicling my life with father, but I was surprised at how much I’d forgotten (blocked?) in that relatively short period. In all modesty, I also found myself amazed at what I’d been through and survived – the unplanned 14-hour ER visits, the 9-month battle over the car keys, the self-taught knowledge of chronic conditions and their related medications, the effort to master health-plan rules and, eventually, Medicaid regulations while overseeing Dad’s various hospital, rehab, home-health and nursing home needs. My sister was visiting last week while I made this trip down my virtual Memory Lane – “I honestly don’t know how I did it,” I said to her, on reaching the end.

And, really, I had it relatively easy – no false modesty meant. Dad’s issues have been, and remain, 90 percent medical (the remaining 10 percent relates to his short term memory, which is becoming shorter by the day). Though he’s been stubborn as an extremely stubborn ox much of the time, he’s also seen reason in issues like a health-care proxy, a legal power-of-attorney and a do not resuscitate order. And, in the end, he’s always been grateful – that hasn’t made him compliant, mind you (see the stubborn ox note, above), but he will tell anyone who asks him how I am that I am his hero. That can carry you through a lot of ER visits and hours on the computer in consultation with Dr. Internet.

I also saw that all my time with Dr. Internet these past four years also has helped me feel much less alone (who knew Dr. Internet had a counseling practice, as well?). Through forums like the New York Times’ New Old Age blog – and the responders to my own writing, here – I’ve learned there are so many others out there going through similar, or much more difficult, versions of my experience. If I’m mystified at my ability to get through the last four years, I’m been absolutely gobsmacked by the folks dealing with the nightmares of dementia, resentment, uncooperative family members and, quite often, the need to care for young children at the same time.

Broader awareness of caregiving issues has grown tremendously in my four-and-a-half years in the trenches (and even in the three years I’ve been writing about it). When I first started reading Gail Sheehy’s Passages in Caregiving (here’s my post: Walking the Walk), it was like a revelation. Since then, Jane Gross, The New Old Age’s original editor, has written Bittersweet, describing her caring for her mother and wending her way through the medical and insurance bureaucracies.

And now AARP, which has been tracking the dollar value of unpaid caregivers’ work for several years, has launched a major initiative to raise awareness of caregiver issues and provide logistical and networking support – you can find a landing page for this effort here. A new public service announcement will be introducing the initiative to television audiences soon (Nancy Thompson, a friend of this blog and the senior AARP media rep working on the campaign tells me the spot likely will begin airing once the election season has passed and more free PSA time opens up in broadcasters’ schedules). But check this this link to see it now. It’s titled “Silent Scream.” The first 15 seconds of this spot have no dialogue, but they so accurately described so my inner emotions at so many points in my own process that I felt I was experiencing a sense memory the first time I saw it.

Anybody following caregiving demographics these past few years will understand that an effort like this comes none-too-soon. Those of us now caring for parents in their 80s and 90s (and above!) recognize that these elders are in the first generation to truly benefit from modern medicine’s life-lengthening improvements, while also often lacking the support needed to live out those longer lifespans. And if we’re able to look beyond our daily caregiving routine to what our own old age might be like, we recognize the need to start addressing how future elders will live out their years, especially given the staggering number of baby boomers who’ve already begun reaching the traditional retirement age of 65.

But recognition of just how difficult these paired processes of aging and caregiving can be is growing, and that gives me hope. Seriously, if you’re 50 or older and haven’t had at least one conversation involving your or someone else’s parents in the last week, you must be talking exclusively with orphans or youngsters, and politicians have parents, too. This latest step by AARP is important, because when an organization with their political heft starts shining a light on such an issue, those with the power to make changes happen start paying attention. The important thing to remember when you’re in the weeds of it all is that you really aren’t alone and that your story has meaning. By sharing those stories and their lessons with each other, as well as with our community, state and federal representatives we may not be able to change our current caregiving situation, but maybe – just maybe – we’ll be able to make the lives of those taking care of us down the road a whole lot easier.

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