Hello, Again

Well, I’ve taken some time off from this blog to try to figure out what might come next for this forum – and to just do some breathing. I’ve still been writing about caregiving – I’ve become a regular contributor to AARP’s TakeCare blog, part of the organization’s Caregiving Resource Center – but that forum is a bit more about nuts and bolts, and a little less about interior thought. So, I’m back here, again, to talk about life with – and, now, without – father.

Much of the last few months has been spent re-learning how to work without the attention deficit disorder (ADD) caregiving can create. The first few weeks after Dad died were taken up with planning his memorial, dealing with financial details and a variety of other tasks that, basically, boiled down to busy work. Once I raised my head from all that emotional clutter, I realized I was falling dangerously behind in meeting my clients’ deadlines – but I seemed to have lost the ability to just sit and work for three solid hours at a time (much less an 8-hour day). Having spent 4-1/2 years dealing with regular interruptions to serve as appointment chauffeur, medical advocate, meal preparer, nursing home visitor and family contact point, I had retroactively developed the attention span of a 10-year-old. I spent the better part of November and December re-training myself on basic work skills.

Certainly, there’s been grieving, as well – Dad died just as his beloved St. Louis Cardinals were going int the National League playoffs, and I felt compelled to watch coverage I otherwise might have just ignored. (I also joked to friends that it was good Dad didn’t have to suffer through watching some pretty dismal performances by those Redbirds he loved so much.) The hours spent going through old photos and considering music options also created many opportunities for tears to flow. But much of that has eased. I think I had pre-grieved so much over the past few years while witnessing the decline taking place right in front of me, that I had already come to some peace with the loss of Dad’s physical presence.

I can’t say I think Dad was ready to die – he was far too pro-life, in a metaphysical sense, for that point of view. But life had definitely lost its fun for him, and, with that, its basic reason for being. He had rallied, ever so slightly, when a brief course of ibuprofen helped him walk a few tens of feet further in his daily exercise with aides. But his fragile kidneys couldn’t tolerate more than a week or so of that treatment, so the knee and hip pain returned, his walking distance again decreased, and the last bit of hot air went out of his balloon. Even the evening cocktail-hour Scotch had become just another time-marking routine instead of an anticipated highlight. So, I think Dad’s death, for me, was a quick Band-Aid yank compared to the slow, constant pain of watching the joy of life that had always defined him drain away day by day.

Now, I’m a bit more likely to smile in remembrance of that joy when a passing moment strikes me. Like this morning, when walking Rex through the kind of gray, raw weather that makes up the birth of spring on Cape Cod, I saw a bright-red cardinal sitting in a tree branch. The scarlet feathers made the bird look like one of those colorized images in an otherwise black-and-white photo, against the dull grays and browns in the background. Seeing him (for, you know, with cardinals it’s the males whose plumage shines), I thought of how such an encounter would have made Dad’s entire day – in my shoes, he would have felt compelled to start a whistled conversation with Mr. Redbird. And it made my morning, at least, remembering Dad’s enjoyment of such a simple pleasure.

 

Bye, Bye Blackbird

So, Dad’s local memorial service was this afternoon. We’ll be having a family service in the early summer, when it’s warm enough to spread his ashes out in Cape Cod Bay, where he wanted them. But it was a lovely gathering this afternoon, in the 1834 meeting house that’s home to my UU church. A great mix of local family, neighbors and good friends, on a gorgeous fall day. Here’s what I had to say.

As I sat down last Sunday afternoon to gather my thoughts for this service, I found myself struck by an incredible irony: In the last few years that I’ve been writing a blog about my time caring for my father, I’ve written, literally, thousands of words about the man. But that afternoon, with my laptop open in front of me, I realized I had no clue what I wanted to say.

You see, Dad and I had a complicated relationship. Not an unusual sentiment, I realize, but Dad was married three times, and each of those wives had a husband or two besides him. Just explaining to others how my various half- and step-siblings are related (or not) can require a Powerpoint presentation. So, being the son of a man at the center of such an extended family … tree? …bush? …vine? …is a complicated experience.

But while our relationship had its complications, Dad, himself, was not a complicated man. His view on life was simple: he loved it. Dad simply did not know how to not have a good time. This could be maddening – he was loud, enjoyed his Scotch a bit more than he probably should have, and would never miss an opportunity to flirt with a waitress, make an off-color remark or – if a piano (and player) were present – break out in song. His complicated family may have wanted to slide under the table when he got started, but he was a party on two legs to much of the rest of the world.

That simple joie de vivre stayed with Dad through some really tough times. Through marriages that didn’t work out as he thought they would, and tough business times when orders (and commissions) were few and far between. “Something will come along,” he’d say. “It always does.” And, you know, it almost always did.

Dad was never a religious person, though he loved the drama and ritual celebrated in the Episcopal church in which he was raised. But I came to see in his time on the Cape that holding onto the faith that “something will come along – it always does,” was really Dad’s spiritual practice, along with living his basic principle that life is meant to be lived well and enjoyed with gusto. He maintained those two tenets even when it became clear this past spring that Pleasant Bay Nursing Center, not my little house on Main Street, here in Brewster, would be his new permanent home.

“Well, here’s where I am,” was his response when I asked how he’d managed to turn his attitude from depression to acceptance over the two or three days it took him to absorb that difficult reality. That conversation took place back in March, and I’ve thought about the sheer grace of Dad’s response – “Here’s where I am.” – almost every day since. Sure, he’d have some down days after that acceptance; but, in general, he stood by his faith – flirting with the nurses, talking trash about the Red Sox with whomever would listen and relishing his cocktail-hour Scotch on the rocks, even if it was sometimes served in a disposable plastic cup.

So, here’s where I am, Dad – standing in a beautiful room, celebrating your life among people who loved you, some who grew to care a great deal about you in a very short period of time. There’s a piano here and someone to play it, and in just a few minutes we’ll all be joining in on one of your favorite tunes. And, after almost 700 words, I’ve finally figured out what I wanted to say today – I love you, and thank you for helping me see both the work and the value of loving life wherever I am living it. I only hope I can continue this practice with at least a portion of your humor and grace, no matter how embarrassing it may be to the complicated family around me.

Amen, Namaste, Blessed be.

 

Many Thanks

The last couple weeks since Dad died have been a bit of a roller-coaster. Obituaries to be written, memorial-service arrangements to be made, the carting of Dad’s belongings from the nursing home to a corner of the basement to be sorted through… well, someday. There also have been a lot of tears.

But there’s also been a great deal of thankfulness. Dad died really easily and quickly – here one minute, gone the next. Since then, I’ve received wonderful support from family, friends, neighbors – and all of you.

I’m thankful, also, for a couple of wonderful articles. Paula Span, editor of The New Old Age blog on the NY Times website, wrote a very nice piece for that blog, which you can read here. And just today, an honest-to-God print article appeared in the health section of the St. Louis Post-Dispatch, which you also can read online.

I’ve also gotten the opportunity to become a contributor to AARP’s caregiving blog, and will be posting there regularly, so be sure to check it out.

As to this blog, I’m not quite sure, yet, the form it will be taking, going forward, whether as a continuing document of my personal journey or more as a vehicle for caregiving advocacy. It’s something that likely will take me some time to figure out. Whatever I decide, though, you’ll all be the first to know. 🙂

 

Blessings

A blessing occurred in Brewster, Massachusetts, yesterday. A 90-year-old man who lived every day of his life exactly as he chose died quickly and peacefully, before his choice – or his awareness of his choice – could be stolen from him. Charles Ross, Sr., born January 25, 1922, died freshly scrubbed (he’d just had a shower), in the care of one of his favorite nurses at about 9:45 a.m., October 10, 2012. The end came very quickly, within the 15 minutes or so between the time of the nursing home’s urgent call to me and my running through the facility’s automatic doors.

He hadn’t seemed quite himself for the previous week or two, though there were no vital-sign statistics to back up my intuition that something was just, well, off. His voice was softer, he was more likely to be sleeping in his wheelchair when I came through the door and there was a stronger sense of depression around the fringes of the inordinate optimism through which he typically looked at the world. One telling example occurred about a week ago, when he complained that he’d missed having corn on the cob this summer. “Well, now you’ve got something to look forward to next year,” I said (yes, I seem to have inherited that envelope-pushing optimism). “I’m not so sure about that,” was his uncharacteristically dour response.

Then, from Stage Left, entered Rex the Wonder Dog, the last significant cast member in the comic drama Dad and I have been living the last 4-1/2 years, and Dad’s spirits ticked up. It was just one week before Dad died when I walked into his room with my new four-legged buddy, a 2-year-old flaxen-haired beauty with a disposition so sweet and calm that, in his presence, one can see the possibility that, in one of his many previous incarnations, the current Dalai Lama was, perhaps, a golden retriever. During a subsequent visit, Rex and I sat outside with Dad and, with his hand on Rex’s head (and, referring back to the absence he’d seen in my life since my old pal Bart’s premature demise) Dad made the statement, “Well, now you have your dog.” At the time, I almost laughed at the solemnity of that statement and Dad’s delivery. In retrospect, though, I see it almost as a checklist item: Chuck has his dog, he’s not alone. Done.

So, now Dad is gone, at least in body. That line between here/not-here is just so distinct. Just five minutes ago, I caught myself in the pattern of checking the clock to see how much morning work time I had left before I headed out the door for my regular 11 a.m. visit. And, sometime in the next six months or so, that transition will be made even more distinct, when Dad’s ashes will be spread in Cape Cod Bay as he wished, near the little fishing center of Rock Harbor, where he loved to park his old Mercury Grand Marquis and watch the charter boats make their way in and out the channel. That area is, essentially, the same stretch of coastline where I once ran with Bart and now send Rex running after tennis balls, just a couple miles of marsh and shallow water away.

I wondered at Dad’s choice, originally – wouldn’t he prefer the company of other former Marines in the veteran’s cemetery, or that of the golfers along the course of his old country club? After all, he hated the cold, damp northeast winds that blow across the bay’s gray water in the winter, and he had no particular fondness for either swimming or beaches. But maybe he knew that, in the sand flats of Cape Cod Bay, he’d still get to enjoy his son enjoying his dog on a regular basis. A man who knew how he wanted to spend his life also knew how he wanted to spend the time that followed that life – and he couldn’t think of a better place to do so.

Rest in peace, Dad. You loved. You were loved. You will continue to be loved. And Rex and I will see you on the flats.

 

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.

 

This Just In: My Father is a Timeline-Leaping Alien

So, today has me thinking about Einstein’s Theory of Relativity, mostly because of several conversations I’ve had with Dad over the last couple weeks. It’s amazing how philosophical he can be, without even realizing it. Mostly, these talks all boil down to how he just can’t understand how he came to be at this place, at this time. “I just don’t understand it,” he’ll say – not so much out of frustration (though he’s certainly frustrated), as much as pure puzzlement. “I was just fine before all this happened. How’d I end up here?” This lack of even a basic acceptance of cause and effect isn’t a new thing – it’s had me banging my head for years. But today, running through yet another of these talks, I now finally understand the underlying cause. My father, it seems, is a timeline-leaping alien.

Now, I have an extremely elementary understanding of Einstein’s oeuvre; so, those of you who actually do understand it – feel free to post corrections, but do so kindly, please. (And also know that I probably won’t change much as a result, especially if your more accurate interpretation starts to muck up my metaphors – because my understanding makes for really cool metaphors.) But I’ve always been intrigued by the concept of multiple, parallel universes, along with the idea that time can be a place – a “where” as much as a “when.” Now, I’ve never taken a physics course, and my math ability tops out at first-year geometry, but I have decades of Star Trek, X Files and Fringe episodes in my TV-viewing past, which, I am certain, more than make up for my lack of any actual scientific training.

The way I understand parallel universes is that at any point where life could go left or right, it actually goes both ways, with our current state only perceiving/remembering the route our current self chose. In other words, while the Robert Frost we know chose the road less-traveled, in some parallel universe, there was a Robert Frost who extolled the value of over-stressed super highways, winning multiple alt-universe Pulitzers in the process. There is a timeline connecting our memories back through all those left/right choices, but there are also innumerable other versions of ourselves with memories of their own timelines, in which they went left when we went right, all with their respective connections between decisions/causes and related effects.

In this framework, Dad presents himself as a relativity superhero, able to leap multiple timelines in a single bound. Though this super-relativity ability has made itself evident throughout his life, it really jumped out at me just a few days ago, when we were talking about his colostomy last November. Apparently, Dad switched bodies with one of his other-universe doppelgangers at about the time the emergency room doctor was checking out his CT scan. Dad seems to have fallen into this universe’s physical form just after a doctor on the other side of the space/time continuum had diagnosed his intestinal blockage as a kink in his intestines, instead of the cancerous tumor discovered in the here and now (or, rather, the there and then).

I say this because, 3 or 4 days ago, Dad was astounded to learn that he’d had an intestine-blocking cancerous tumor removed during that 3-1/2-week hospital stay. And he had no recollection that he’d been stuck in the bed in excruciating pain for an entire week before the operation even took place. Instead, he was convinced the surgeon had over-reacted to what certainly had been nothing more than a twist that would have worked itself out if the doctors had just given it some time, instead of cutting into him with their overactive scalpels.

“Dude,” I can hear you saying (if you’re someone who says things like “dude”), “those meds and all the trauma, and the fact he was pushing 90 at the time… those are all excellent reasons why his memory would be less than accurate.”

Damn you and your Vulcan logic, anyway.

However, in the face of that extremely logical response, I present 52 years of first-person evidence that his immediate and extended family all will support. The man has an absolutely uncanny lack of unpleasant memories – not a lack of unpleasant experience, mind you, but a lack of any memory of those experiences. While, in the past, I’ve seen this behavior simply as some sort of neural inability to store such memories (as you can tell, I’m perfectly happy inventing pseudo-scientific explanations in any number of disciplines), this latest instance has convinced me the timeline-jumping alien theory is the only possible explanation.

What would lead me to this seemingly bizarre conclusion? Well, I simultaneously have discovered my own relativity super-power. There are times, lately, when I’m with my father that I’ve felt myself to be in multiple space-times simultaneously (yes, in my own version of relativity, “space-time” is an actual working phrase – I’m thinking of trademarking it, so I best not see it show up in some current reader’s future screenplay). There I am, sitting on his bed, next to his wheelchair or, as today, in the July sun on a bench, with him in his chair parked opposite me, while at the same time I have the sense of sitting next to him on the bench seat of some generic oversized, mid-70s American sedan (Is it the Caprice or the Bonneville? Maybe the Le Sabre?) as we drive downtown to the mental hospital that was my stepmother’s residence for weeks and, sometimes, months at a time during my teen years. And I’m also sitting at any one of innumerable restaurant/country club dining tables when he and my stepmother continue well-past the just-one-more limit on Scotches and mai-tais, with loud and embarrassing results. And I’m also standing in the living room of that old house on top of the hill, that candidate for an episode of “Hoarders,” filled with decades of my stepmother’s obsessive thrift-shopping finds (“It was cozy,” Dad remembers), as then-82-year-old Dad reaches for yet another of the nitroglycerin tablets he now claims never having needed, just before falling into the sofa in a faint I thought certain to be a heart attack.

My presence at – and memories of – so many such unhappy experiences, of which he has little or no recollection has set my opinion firmly in place. I’ve determined that I’m a repository that somehow must exist in any arrangement of time and space that supports such timeline-leaping aliens as my father – the repository of his unhappy memories. Up until now, he’s had the ability to leap from his current space/time coordinate just before – or, perhaps, just as – such memories were being formed, leaving them to hang in mid-air. I, in turn, have been sitting next to, across from or, simply, nearby him so many of those times that I think I became some sort of receptacle for those memories that were incapable of existing in the limbo created by his oh-so-well-timed leaps.

I realize this theory needs a little fleshing out, probably involving many blackboards’ worth of chalk-scribbled formulae and maybe a lab table or two of Bunsen burners and bubbling test tubes. Or, maybe the science doesn’t exist yet to provide definitive proof. But, like the physicists now pursuing that elusive “God Particle” in their Swiss accelerometer, my belief in this somewhat unbelievable theory persists, despite the absence of verifiable, repeatable results. You see, I’m absolutely certain that, when it comes to the physics of family caregiving (and you know I wouldn’t be able to resist this pun), it’s all relative.

 

It Ain’t Over ‘Til It’s Over

It’s been difficult for me to avoid feeling defensive while listening the last few weeks to the series NPR has been running on intergenerational families taking care of elders. It’s a really well-done series, and the individual stories are very moving. It has focused on a very specific segment of caregivers, those who are taking care of elderly parents while also raising their own children. Still, because there’s so little coverage of caregiving for elders in any situation, I have found myself straining to hear my own voice and, given the move we had to make with my father to a nursing home, some validation for what remains a difficult decision.

I’m not going to rehash the absence of any coverage of the men who do this work – I’ve covered that enough elsewhere, I think. Suffice it to say that I think a news organization of NPR’s caliber should have recognized the need for a broader spectrum – or, at least, included husbands and sons of the three central female caregivers in their interviews – more than the one instance I’ve heard. The women are all married, and I can’t believe these decisions haven’t had an impact, or been supported by, their male spouses. Enough said on that.

An even more sensitive issue for me has been the absolute insistence of these families that a) home is the only place their elders can get good care, and b) turning to a nursing home is, in some way, giving up.

In a way, these attitudes are to be expected at the point these families all seem to be in the caregiving arc. I’ve been at that place, too, where things are all sort of working, but just to get by, you have to keep your head down and do your best to ignore the dark clouds that are so obviously looming whenever you raise your eyes. At that point, the idea of a nursing home is like admitting defeat. Family belongs at home, not in an institution. And, as one woman in the segment today asserted, “You always get better care from family.” (The other two female caregivers at the center of NPR’s series murmured in harmony, like back-up singers, in agreement with this statement.) So, a nursing home admission is, by its very nature, an acceptance of failure and a guarantee that your loved will be receiving substandard care.

When the interviewer asked these three women what they thought their situations would be like a year from now – well, the responses were both naive and heartbreaking. There was talk of nursing beds in the living room and 24-hour outside care arrangements. One of the women has a daughter who has given up a full-time career to take care of a grandmother – how much more can she give up? And the caregiver mentioning 24-hour care – the same interviewee asserting that family care is always best – lives a very middle-class life; the expense of such extensive homecare would have her bankrupt in 6 months, at the very longest.

It was the two basic assumptions at the heart of that assertion, “You always get better care from family,” though, that made me want to reach through the radio, take the interviewee’s hands in mine and say, gently, “You’re wrong.” You’re not giving up when you walk into that facility’s admissions office, you’re just changing your job. And that new job of care-manager/social worker/benefits administrator/overall patient spirit-booster can be every bit as challenging – and draining – as anything you did when your parent was at home. But, with the right facility and staff, your parent may get far better care than you could ever provide on your own.

I would be speaking these words from my own experience. Dealing with the second of these assumptions first, my father is getting far better care now than I ever could provide. I realize that I only know one facility, and I’ve heard the news reports of the horrors of abuse that can take place elsewhere. However, in this one nursing home located in my very middle-class town, Dad has 24-hour RN coverage, aides helping him get up, shower, dress, walk and go back to bed again, regular medical oversight from a great nurse practitioner and wonderful social interaction with a staff that can’t say enough nice things about him. Keeping up with the range of medical issues he’s experienced since last October would have destroyed me emotionally, professionally and financially if I’d attempted to keep him at home.

However – and here’s where I talk about the first of those assumptions – in no way did my job end when Dad signed his admission papers. It simply changed. When Dad was living at home, my day’s rotational center was dinner. If the meal wasn’t on the table by 7:15 p.m., things could go south very quickly. He could start bitching about being hungry and there could well be another Scotch by his side to help him pass the time, which only boosted the crankiness factor. So, I counted my day backward from 7:15 – dinner prep needed to start by 6:40 p.m., which left me from 6 p.m. or so until then for my own gimlet chilldown time. To get that 30-40 minute respite, I had to leave my workday for gym and food-shopping by 4:30 p.m., at the latest, and so on, and so on.

These days, it’s my mornings that require counting back, because I make my daily visit around 11 a.m. Why not wait until day’s end? Well, this way I get to check in with the day shift. These are the folks who see Dad most closely – they know if he’s had problems overnight or if he’s had issues getting up. They’re the ones who weigh him several times a week and make any needed doctor appointments. And if I think there’s an issue that really needs a professional’s once-over, this is the time of day the nurse practitioner is most likely to be on the floor. And, by going every day at about the same time, the staff knows when they can catch me if they have concerns to share with me. It’s all part of my new job as care-manager, instead of direct caregiver.

And this care-manager position takes its own toll. Now my late afternoons and evenings are freer, but I’m losing valuable work time during my most productive time of the day, the morning. The process of applying for Medicaid (MassHealth, here in the Commonwealth of Massachusetts) is like the slow death of a hundred cuts, inflicted by all the pieces of paper one must gather to satisfy the bureaucrats. And there seems no end to the line-up of petty, time-consuming errands and phone calls, such as the 2 hours spent in two different marathons with Sprint’s ironically named “customer service” agents, attempting to reverse sexting-service (yes, a service sending him naughty texts several times a week) charges totaling $40 month. He apparently got some spam text, pushed the wrong button on his cell phone and didn’t know why he was getting the daily pillow talk. He no longer has any kind of data-connectability, but I ended up caving and sending the $40 just to end the “customer service” torture.

So, to those middle-aged and older children who think they’d be giving up their work as caregiver by considering a nursing home, I say it might be time to start preparing your skills for a new, and equally important, position as care-manager. Maybe the interviewee I quoted earlier is right, and people really do get the best care from their family – I’m certainly still at the center of Dad’s care. The thing to remember, though, is that sometimes those care needs are best met outside the home.

 

Money

I’ve been quiet here for the last few weeks because life with Dad has lacked the isolated elements of drama that typically push me toward the keyboard. Instead, there’s been the daily routine of an hour of gin (as in cards, not Bombay Sapphire) with him before lunch, and a check in with the nursing staff on any potential medical issues. On the surface, all seems stable and just a little boring, but nagging financial issues have been slowly burning under the surface, in the way forest fires can stay alive on underground roots before breaking ground in a tree-sized whoosh.

First, there’s been the daily/week/monthly responsibility of managing Dad’s finances as well as my own. “How big a deal can this be for a 90-year-old in a nursing home?” you might ask. I didn’t think it would be an issue, myself, back in November, when I first started signing the monthly checks for his cell phone, credit card, Medicare Advantage plan and various doctor co-pays. (FYI – I’ve been a co-signer on all his accounts since he moved in with me.) Then all the niggling, confusing correspondence and phone calls began with these various companies. The billings for his hospitalizations and ambulance rides were especially annoying, because the bills might show up more than a month after-the-fact, with follow-up invoices maybe 2 weeks later. I soon learned to hold onto invoices after I paid them, to double-check whether those bills were duplicates or new notices. Then there were the two afternoons I spent on the phone with Sprint’s “customer service” (full irony intended with these quotation marks) disputing the hot-chick text-message service charges on Dad’s cellphone bill.

Then there’s been the need to preside over the slow dismantling of Dad’s assets to pay the monthly nursing home bill. Some of this I’ve been able to do under my own authority as a co-signer. But the most significant transactions have required Dad’s own signature, since he’s still capable of making these decisions on his own. For each of these signings, I’ve had to get the paperwork organized and bring the required forms in for his formal approval – generally with time spent re-explaining the reasons why an account has to be closed and estimating again for Dad how much of his minimal life savings still remains before the balances drop to near-zero. And, also, re-explaining why we can’t just change the account to my name and pretend to the state that the assets don’t exist anymore. Just thinking about those visits can make me wish to replace the card game with gin of the Bombay Sapphire variety.

And now I’m in the middle of preparing the application for MassHealth, the administrative arm of Medicaid in the Commonwealth of Massachusetts. We can’t submit it until Dad’s assets get below $2,000, but it needs to be ready for submission as soon as that date arrives, which is likely to be sometime next month. Then there will be a new series of regular accountings, I believe, to ensure all expenditures fit into allowed categories the state has established for its Medicaid beneficiaries.

Aside from the periodic required signatures, I keep these financial concerns below the surface when I step into Dad’s room for the daily hands of gin. But worries over bills and deadlines and spend-down compliance have taken up small quarters in that corner of my brain reserved for anxiety, and they can flare up like one of those Western forest fires in the middle of the night, burning up any hope of returning to sleep. Of course, medical issues still can add fuel to these blazes – yesterday I learned the nurses had spotted a potentially cancerous growth in Dad’s left ear that may need removal. Dad bleeds like a stuck pig with even a shaving cut, and is prone to wound infections, but this growth has gone from small scab to possible ear blockage in just a week, so doing nothing might not be an option.

To shift analogies from forest fires to baseball – It ain’t over ’til it’s over. It appears the fat lady wasn’t singing a final aria when Dad settled into the nursing home, she was just serenading the fans during the seventh inning stretch.

 

The Power of Positive Thinking

So, four days ago Dad marked his fourth anniversary as a Cape Cod resident (NOT a Cape Codder – there are rules around here about who can claim that title, and neither Dad nor I will live long enough to earn it). When he moved out here, it was because we both knew he’d end up in a nursing home quickly if he stayed in St. Louis. Keeping him out of a nursing home had been our primary goal up until late October, when what he thought was constipation turned out to be a tumor in his colon. Over this past weekend, a day or two past that fourth anniversary date, he officially ran out of Medicare coverage at the facility where he’s been living since about Thanksgiving. So, we’re now in the spend-down period, when nursing home bills eat up all but $2,000 of his savings and he’s poor enough for Medicaid (called MassHealth in Massachusetts) to kick in. And, while this was just the situation we both had been dreading for years, it turns out it’s actually o.k., in large part because of my father’s amazing emotional resilience.

The first month or so after Dad was admitted to this facility’s rehab wing for physical therapy was pretty stressful for me. He still thought he could get well enough to come back home, while all I could think of was his weak, shaking hands and that colostomy bag, along with the blood sugar testing and insulin shots he now required. He was making some progress toward walking, but still was wearing Depends because he couldn’t make it to the toilet on his own. However, his early January hospitalization put an end to his dream of getting home again. He was flat on his back for nine days with congestive heart failure complications and, by the time he was readmitted back into rehab he had lost all his progress. He tried to recoup those losses in his physical therapy sessions, but then his oxygen levels and blood pressure started dropping anytime he tried to stand up, and the therapy had to be discontinued.

That was a dark day. I happened to show up just after he got the verdict from his therapist, and I’ve rarely seen him that down. It seemed like he might have hit that “What’s the point” stage, one hears about, when folks just decide their time has come. Overnight, though, some extraordinary wind blew through his psyche, and when I showed up the next day to check on him, those dark clouds had passed. “What else can I do,” he said with that familiar shrug when I noted the positive change of spirit. “This is where I am.” He’s maintained that equanimity in the weeks that have followed, and his acceptance has been a gift to me, allowing me to shed the guilt I felt with the thought that I might be forcing him to stay somewhere he didn’t want to be.

Watching Dad continue to interact with the staff in his characteristic smilingly sarcastic manner when I show up for what has become a daily game of gin between the two of us, I’ve also been able to put aside the thought that a nursing home would be hell on earth for any elder competent enough to understand they’d reached their second-to-last resting place. I’ve been an on-again/off-again member of caregivers’ support group at the local Council on Aging since Dad moved in, and many of the other caregivers have been dealing with parents or spouses at various stages of dementia. How much easier it would be, I’ve thought, to handle the emotions attached to admitting someone to a nursing-home if that person wasn’t in a state to understand the situation.

However, the last few weeks have put such thoughts to rest, because I’ve come to see that Dad’s quality of life really hasn’t diminished, despite his change of residence. He’s not going to be one of those life-of-the-facility types one hears about – he just doesn’t have much interest in all those other “old people” attending the activities. But he’s completely charmed most of the staff, and, as a result, likely has more interpersonal interaction than he did living with me. As before, he spends most of the day watching golf on TV, but nurses and aides are in and out of the room several times an hour. And when I show up for our daily gin game, we spend real time together, resentment-free on both sides.

And, on the other side of that false assumption, I’ve also seen, up close, the level of incapacity with which human beings can live and still sustain a heartbeat. Walking down the hall to Dad’s room, I often pass aides pushing wheelchairs that look like rolling recliners, with patients curled into near fetal positions. They’re being transported to a dining room where aides will spoon feed them their lunch. No sign of personality or emotional affect remains. “What was I thinking?” I asked myself, the first time I walked the hallway to Dad’s room and considered the heartbreak family members must feel when faced with this physical reminder of a mind that’s long since left. “Thank God that’s not Dad.”

Just as I began writing this installment, a friend posted a great quote from Abe Lincoln on their Facebook wall – “Most folks are about as happy as they make their minds up to be.” Through all of his stubbornness, and his refusal to acknowledge the health issues I saw staring him right in the face, Dad has demonstrated the truth in Lincoln’s observation. I hope my attention to exercise and eating (mostly) healthy will keep me in better shape if/when I hit 90. But, if not, I also hope I’m able to remember Dad’s example when facing any similar situation and make up my mind to be happy. Because, well, what else can you do?

 

You May Find Yourself

I’m a gay man of a certain age and, as such, it wouldn’t be out of place for an outside observer to assume me to be a disco fan. However, while I love me some Weather Girls, I’ve always been much more of a New Wave kinda guy. Elvis Costello, Joe Jackson, The Cars, The Police, the B52s (in addition, of course, to Joni in all her early-80s jazz phases) were the musicians who got me onto the floor. The Talking Heads rank at the top of this list, with all their arty ambiguity and surrealistic, mystical imagery. “You may ask yourself, how did I get here?” they asked in “Once in a Lifetime.” “You may ask yourself, how do I work this?” In my early 20s, these lines seemed so deep, yet irrelevant. Today, they seem absolutely prescient.

Today, I had what was, at the time, a natural, in-the-flow-of-things conversation with the nursing supervisor on the floor of the nursing center where Dad’s staying – just how aggressive do we want to be in his care? You see, he’s up 5-7 pounds in the last week and back on oxygen. He’s getting weighed daily, which is more aggressive than typical for this facility and can mean daily or every-other-day medication adjustments. And pushing higher doses of diuretics can mean a great chance for kidney problems. In the end, Dad’s heart may just be about ready to call it quits. So, the nurse’s questions were both justified and humane – treatment or comfort? What’s the priority. I’ll talk with Dad about it during tomorrow’s visit, I said – just one more of those end-of-life kind of conversations that seem to be occurring with the frequency of observations about the day’s weather between Dad and me.

Two days ago Dad & I met with that same nurse, along with the physical rehab supervisor and the nursing wing social worker to talk about what’s next. Well, what’s next, post-rehab, we all agreed was a long-term care room. Dad’s blood sugar is all over the map, ranging from 120 to 210 or higher in any given 4-5 hour period. He can’t walk unassisted, period, and even assisted he can’t go more than 30 feet or so without sitting down. And then there’s the oxygen. And chest fluid. And kidney disease.

So, there I was, the 52-year-old son helping manage medical intervention levels for a guy who, for 75% to 80% of my life has steamrolled over the word “no” like an 8-cylinder pick-up over an unfortunately located baby squirrel. And, at that moment, it seemed completely normal. You see, he’s back to shaking badly enough to make getting a glass of water from the table to his mouth a challenge. Nurses now give him his pills two at a time in a spoon. He can still beat me at gin (o.k., maybe not the best measure of mental competence), but only if I do all the shuffling and dealing and don’t complain if he sometimes ends up with six cards in his hand instead of seven because he’s forgotten to pick up as well as discard.

It all seemed almost kind of normal until I got out to the car. That’s when I flashed back to David Byrne’s 1981 “Once in a Lifetime” lyrics. Byrne was 29 when he wrote those words describing that kind of existential crisis that can wash over you when you find yourself living in the middle of a situation you never would have predicted for yourself.

We’re just about a week shy of four years from the Friday I looked down at my ringing phone to see “St. Joseph’s Hospital, St. Louis,” show up on my phone’s caller ID. I picked up the phone to hear an extremely efficient ER nurse let me know that Dad had been admitted with multiple issues, and that he really shouldn’t be living on his own any more. For the better part of the last four years, he’s had a great life. That state seemed so normal that, I think, both he and I are running David Byrne’s lyrics through our head – to paraphrase, “how did we get here… my God, what have we done?”

What we did was live. We lived lives together that were combative and difficult, with humor and anger, raised voices and apologies. There was never quiet in this house and, as I’ve said before, I’m a guy who thrives on quiet. All I hear now is the Spanish guitar playing through a Pandora radio station. If the last four years hadn’t happened, this might seem perfectly normal. But those four years did happen, and I’m left wondering, “how did I get here?”