July 2010

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I recently joined the Caregiving listserv group on the AARP site (you can find it on the bottom of the right-hand column on this page: http://www.aarp.org/relationships/caregiving/), and one of the current topics is “What do you wish you had known when you first started caregiving?” I added some brief remarks to the thread a couple days ago, but the question has continued to linger ever since. Honestly, I almost think I’ve been better off going into this in ignorance.

Ignorance is, I think, the way many of us first confront the need of a loved one for extra care. I know in my case, my sisters and I had a certain number of hand-wringing conversations, but they inevitably gave way to another glass of wine and our respective takes on the previous week’s American Idol performances. But, when reality crashed its way through my resistance, in the form of a phone call from an ER nurse 1,200 miles away, action was suddenly forced. If I had known then what I know now, my reaction to move Dad in with me might have played itself out differently. And, maybe, like an early 20-something who suddenly finds himself a parent, I’ve been better off approaching new challenges blindly, rather than anticipating hurdles that haven’t yet arrived.

My motivation in moving him out here was simple – I didn’t want him 1,200 miles away from anyone who cared about him if something more serious happened, making the option of moving  no longer an option. We’d figure out the details once he got here, but, the important thing was getting him settled safely somewhere closer to where others could help. Mostly because of inertia, I suppose, a first-floor bedroom became his new home.

If you’d asked me then what I wanted to know, in the whirlwind that was that first couple of months, I probably would have focused on specific, process-oriented queries. How does Medicare work? Why do I have to upset Dad’s insurance applecart just because he’s crossing state lines? Is my house safe? I’ve since learned that these bureaucratic annoyances are like little buzzing gnats. The day-in, day-out emotional stresses are the swarming mosquitoes that can suck the life force out of you, leaving you anemic and covered in welts.

So, I guess what I wished I’d known are some basic strategies for living – useful at every stage of life, but especially helpful in both acute and chronic crises. The thing is, I think I would have thought many of the lessons to be little more than new age greeting-card homilies before this all began. For what it’s worth, I pass on a short list of life rules by which I now try to live, and that could have been more helpful than any senior-resources checklist – it would be interesting to hear how others might add to these ideas, as well.

Remember to breathe. You’re not going to be perfect. No one human being can keep another human being alive by sheer willpower, though you will try. Stepping back from that ego-driven desire to control may give room for a solution – or, at least, acceptance – to enter your consciousness.

Pick a role. Think of the ways you turn to different people in your own life – who you call for practical advice, who you reach out to when you need a dry shoulder, who you send snarky gossip to on Facebook, who you ask out to a movie when you just need to get out of the house. No one person can be all those people, and you can’t be all those people to your parent, either. For my Dad, I’m the practical minder. My two sisters who live across the country are his major morale boosters. So, I’m not always making him happy – but his face always lights up when one of my sisters calls, and I’m totally o.k. with that. My sisters appreciate the work I do, I appreciate the joy they bring him, and we all do our part to keep Dad going.

Let others have their roles, too. A not-always-obvious corollary to the point above. If you’re the one managing the prescriptions and doctors’ appointments, changing the sheets and washing the dishes, it can sting a bit to hear how wonderful it is that another sibling makes a weekly phone call. That inner, nagging “what about me?” voice can start making its way out of your mouth faster than you can say, “you always liked him/her better.” If you take a step back, though, maybe you can see just how wonderful that daily/weekly/monthly call really is. Does your parent smile? Then the caller is playing an important role, and you’ve gotten 10 or 20 or 30 minutes of respite. Sit down, relax, and let someone else take center stage for a few minutes.

Maintain relationships. Remember, you and your other family members still will be family once your parent has passed, and this experience can either bring you closer together or tear you apart. To primary caregivers: understand that others may not know you need help, or may feel shut out by your own take-control nature. To other family members: consider the stress that might be behind a sharp comment, and make an effort to listen, first, before stepping in with a surefire solution.

Remember the life you will have once this chapter has ended. This is a lesson I’m just trying to learn now. When your parent dies, you will, most likely, still be alive. What do you want that life to be? Really, this is the question you should be asking yourself at the beginning of the process, and your answer – not the swirling gnats and blood-sucking mosquitoes – should be your guide along the way. One of my sisters gave me very good, and difficult, advice this spring: No single person’s life is worth the life of another. People give up jobs, abandon relationships and ignore their own physical and mental health, all to the end of maintaining the life of a loved one, and are left broke and broken when that loved one dies. Like the airlines always tell us just before takeoff – you’ve got to put on your own air mask first, if you’re going to be any use to others who might need help adjusting their own elastic straps.


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Gail Sheehy has built a career investigating life processes in a library-shelf full of books, many of which include the word “Passages” in the title. Most recently, she turned her attention to yet another passage many of us find ourselves experiencing – the passage through the process of caregiving. I just finished reading Passages in Caregiving: Turning Chaos into Confidence, and, while my life hasn’t changed as a result, I did find some very helpful insights.

The book is more than extensive reportage. It’s also a memoir of Sheehy’s own experience caring for her husband, the founding editor of New York magazine, and a mentor to too many of the now-aging new journalists of the 1960s to list. Felker survived several bouts of cancer, in no small part due to Sheehy’s vigilance, and caregivers reading her accounts of trying to make sense of multiple, conflicting specialists’ orders will all shake their heads and mutter “amen, Gail,” at her righteous attempts to just get them all to listen to each other. For more than a decade, Sheehy managed medical care, supervised staff and even devised liquefied diets for Felker – whose throat cancer cost him the ability to swallow.  In the process, she developed a powerful metaphor – the labyrinth – to describe and understand the passages she and other caregivers experience as they aid loved ones through extended illness.

Labyrinths often are confused with mazes, but, though they bear some resemblance to each other from a bird’s-eye point of view, they serve completely different purposes. Mazes are constructed to confuse, with dead ends designed to confound even the cleverest attempts at escape. Labyrinths, on the other hand, provide their own guidance, with a single, snaking pathway leading into their centers and out, again. Some are used as part of spiritual practice, representing the pathway from birth to death and resurrection.

The switchbacks one follows in a labyrinth are called “turnings,” and Sheehy identifies eight in the caregiving process. Beginning with “shock and mobilization,” these stages go on to include “the new normal,” “boomerang,” “playing God,” “I can’t do this anymore!,” “coming back,” “the in-between stage,” and “the long good-bye.” Even the names of these eight turnings can evoke easy recognition among those who’ve experienced their challenges.

Now, the memoir Sheehy threads through her findings may leave you in awe of the different planet inhabited by caregivers who can afford monthly homecare bills that can hit $15,000 and family reunions aboard French river-barge cruises. But the pain and frustration she expresses rings true (and the balancing act she describes performing in a valiant attempt to meet editors’ deadlines and her husband’s care is a circus-worthy effort I live daily).

There’s also something about breaking down an overwhelming process into a series of smaller steps – even if one is destined to repeat one or more of those steps multiple times – that can give a body room to breathe. “I remember that,” I said to myself, reading the early “shock and mobilization” pages. “Oh that awful relapse last winter,” I recalled, reading about “boomerang.” And, “that’s where I think I am now,” I thought as I read the opening to the chapter on “coming home”:

“This is a critical turning point…. You know you have reached it  when and if you become aware that your loved one is not going to get well or return to you whole. He or she will become more and more dependent and needy…. Losses weigh heavily. But it is also a time for inner work on ourselves. it is here that caregivers who survive begin the effort of coming back to life.”

While Dad has been doing a bit better since mid-April, that improvement is slowly ebbing away. It’s hot here on Cape Cod now, with the muggy, humid air that Dad floats through like a fish in water, thanks to his 86 years in St. Louis. But fall, and then winter will be coming again, soon enough. I can see by the falling urine levels in his nightly urinals that his peeing is slowing. We see the kidney doctor next month, and I’m very curious to see the results of the blood tests that will precede that appointment. I think Dad is beginning to feel the frustration inherent in the realization that his gains of several months ago may be receding.

Having passed through Sheehy’s “I can’t do it anymore” phase, I’ve come to realize that very little would be accomplished by ramping back up to my previous sense of urgency as I see Dad beginning to pee steadily less. And, a month or so before picking up her book, I had come to the conclusion that I had to begin envisioning, and working toward, a life after Dad. I forced myself to drive through a rainstorm to a journalism networking event in Boston – my first trip off-Cape in months. And, for the first time, I bought myself a non-resident season sticker to Nauset Beach, located in the town next door to mine. In previous years, I had parceled out visits to this little piece of summertime paradise one $15 parking fee at a time. Since buying the permit, I’ve been spending four or five hours at a time, several days a week, swimming, reading and just simply zoning out. The dream of such days is one of the reasons I moved out here, and I think it’s important to begin making that dream come true even while Dad is still with me.

Sheey’s book may be out of financial reach for many caregivers (it retails hardcover for $27.99, but you can get it on Amazon for $17.32), but you might want to ask your library to hold it for you once they have it available. She offers some strategies for dealing with each of her eight phases, but many of those lessons you already may have heard elsewhere. The biggest value to me were, simply, the “I’ve been there” moments I encountered as I read the stories of Sheehy and all the other caregivers she interviewed. Just knowing that a publishing house the size of HarperCollins recognized a market large enough for a book such as this has helped reinforce the realization I’ve gained since starting this blog – I am not alone, the readers who’ve shared their stories with me are not alone, and we all gain strength through the knowledge that our respective stories have power to help us all in our paths into, through and out of our own personal labyrinths.

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I think it was in 11th grade English that we read Melville’s short story/novella “Bartleby the Scrivener” (I think a lot of teachers assign it because it gives them a pass on having to crack into Moby Dick). If you missed this pleasure, it tells the existential story of a law firm copyist who begins withdrawing from life, with the frequent refrain, “I would prefer not to,” at every request made of him. I’m beginning to feel almost as repetitive in my relationship with Dad, these days, though my similarly frequent refrain boils down to a single, two-letter word – “No.”

My use of that word – or it’s slightly cushioned (and, possibly, more annoying) cousin of a phrase, “I just don’t think that’s a good idea” – seems to be defining the shrinking borders of his life, lately. Last night, that phrase was used in response to Dad’s idea that he use the 4-burner, 40,000 Btu propane grill on the deck to cook the steak he’ll be having a couple nights from now, when I go out to dinner with friends. Last week… well, last week was all about driving.

A week ago Monday, Dad went on a wild adventure disguised as a drive for lunch and a trip to CVS and the bank. It began with a wide right turn out of the driveway into the thankfully empty opposing-traffic lane, then a near miss of the mailbox – and of me, standing at the mailbox – that almost took him off the road, as well. A couple hours later, I got a call from a friend letting me know that he’d nearly had a head-on collision with her as he drove into the exit lane for the bank’s parking lot. When he pulled into my driveway to park, he ended up halfway across the backyard.

We had a bit of a set-to that afternoon, especially when I learned that lunch had included a manhattan – and I don’t mean a tomato-based clam chowder. The next morning, I discovered that he’d also gotten his pills confused the previous day, and had taken his bedtime pills with his breakfast, so he’d been driving around with 10 mg of Ambien in his system. Tuesday noon featured an even bigger set-to, as I let him know that I’d be driving him to poker that day – I was saying “no” to his driving until we saw the doctor the next day. As tempers flared, the phrase, “while you’re living in my house…” even crossed my lips. Who says you need kids to turn into your own parents – you can do it with your parents, themselves, too!

The next day, the doctor listened to each of us, in turn, then paused, and addressed us both. We were entering a gray area – yes, older folks can lose driving abilities, but this case was particularly exacerbated by an avoidable medication mistake and a misjudgment on alcohol. And taking keys away completely can be a serious emotional blow, with a loss of independence that can mean the beginning of depression (I’m paraphrasing). He proposed a compromise that fell somewhere between my seize-the-keys-and-list-the-car-on-Craigslist absolutism and Dad’s keep-the-cocktails-flowing status quo (and, as a sign that it was probably a good start, neither Dad nor I were completely happy with the doctor’s idea). Simply put, Dad can’t have any alcohol in him when he gets behind the wheel – not even a beer. Dad grumbled mightily at the removal of yet another symbol of his independence, but, in the end, gave in when he saw there was no way getting around the combined front of the doctor and me. He was able to celebrate the new detente with a manhattan over lunch, because I was the one driving.

As I said, I’m not completely at ease with an approach that allows Dad to stay behind the wheel. For one thing, it means I have to remain the tattletale, the reporter of mis-deeds, the one who says “no.” Walking into the doctor’s office, I really wanted someone else to step in and be the no-sayer for once, and clear this one item off the checklist of things that make me afraid on a nearly daily basis. But, then I watch Dad’s frustration as his health appears to be starting yet another slow slide downward. I see him close in on himself as his world shrinks around him, one proscribed activity at a time.

Melville’s Bartleby meets his end as the result of an existential crisis that plays out to an inevitable conclusion – finally, he simply prefers not to exist. Dad is by no means anywhere near that point yet. But, as I see the light in his eye burning less brightly with every newly-forbidden pleasure and recognition of reduced capability, I see him getting closer to being someone who’d prefer not to. And then I see the compassion in saying a qualified -and very watchful – “yes” to this one activity that helps keep him preferring life to its alternative just a little bit longer.