caregiving


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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.

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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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I haven’t written since Dad’s hospitalization in late October because, honestly, I haven’t been able to focus on a single issue long enough to write a post. I’ve been living in a bit of a fog for more than 6 weeks now, as Dad made it through 3-1/2 weeks in the hospital and, now, another 3 in rehab. We’ll be coming to a decision point soon, though, regarding Dad’s eventual living situation, and that fog is shifting in nature, from confusion to dread.

As a catch-up, it turned out that Dad did, in fact, have a tumor in his colon. This isn’t a complete surprise – back in February, he had a stool sample test positive for blood, but he refused to have a colonoscopy (read about it here). The tumor was discovered during surgery, a procedure necessitated by the fact that his colon was completely obstructed, causing pain that not even morphine could ease. On the plus side, the surgeon was able to get the entire tumor, and it appears the cancer hadn’t had a chance to spread. On the negative side, though, Dad woke up with a colostomy bag, which is likely to be permanent, since reversing the colostomy would require him to have similar surgery all over again. Because this surgery nearly did him in, it’s doubtful the surgeon would want to repeat the experience.

A number of complications arose post-surgery – he developed thrush in his mouth and throat, which made eating almost impossible for a couple weeks, so he lost more than 20 lbs., and he also developed a case of c. difficile, which is a kind of bacterial diarrhea that can crop up when you’re taking major antibiotics. He was transferred to rehab while still dealing with those issues. His first week or so there were pretty un-productive, but in the last two weeks, he’s gotten on-board with physical and occupational therapy and has actually walked 20 feet or so with a walker.

So, you might ask, with all that progress, why the dread?

At some point in the not-so-distant future – possibly as soon as five days from now, or a week after that – Dad’s going to hit a plateau, at which point his insurance will require him to be discharged… but, to where? I have serious questions about him coming home, but I’m tearing myself up inside knowing that the only alternative is a nursing home – possibly, the nursing wing of his current rehab center.

One big reason for my concern can be boiled down to a simple two-word phrase: the bag. Dad will be 90 next month and has never been what one might consider fastidious. His hands shake picking up a glass of water these days, so, obviously, motor skills are an issue. Even if he’s able to get up out of bed by himself at discharge, his balance will still be compromised. And he’s demonstrated, over and over again, his inability/refusal to stick to health professionals’ instructions for more than a week or so. To me, this all paints a picture of a guy who may be able to pass a nurse’s scrutiny on any given day, but will fall apart after a week or so at home. And I, then, will be the only back-up guy for dealing with leakage issues – or, even, bag explosions (both have happened, even under 24/7 care, in the rehab center), whether they occur in the middle of the night or when I’m in the middle of a conference call.

In addition, beyond the bag, there’s also the simple fact that, despite physical/occupational therapy progress, his health is very fragile. Since his hospitalization, the diabetes that had been merely borderline has become an issue. The nurses check his blood sugar several times a day, and he’s getting insulin shots multiple times a week. Yes, many people are able to deal with blood-sugar testing and insulin shots on their own, but they aren’t learning how to do it all at age 90, with questionable motor skills and even more questionable motivation to stick with the testing routine in the first place. So, again I become the back-up nag/finger-sticker/shot-giver. Of course, his chronic kidney disease, peripheral artery disease and general heart issues also still remain.

Having been through the rehab-center discharge process with Dad multiple times before, I know how the routine works. Once the participants in his weekly case-management meetings come to the conclusion that he’s hit a plateau, we’ll have 48 hours to figure things out. Because of everything I’ve mentioned above, I’ve started the difficult conversation with Dad that home might not be an option when we hit that decision point. And I’ve started the application for the rehab center’s long-term care wing, and started doing all the work to get his finances in order for a possible Medicaid spend-down. Even without all my background anxiety, this would be an almost overwhelming process.

I’ve been keeping Dad aware of what I’m doing, but he seems to think that, if he just works hard enough in his therapy and with the nurse who’s dealing with his colostomy bag, he’ll be just fine at home. While I don’t say anything to discourage him, inside I’m wondering how on earth I’d be able to keep my business – much less a personal life – afloat, with him back in my house. For readers who don’t know this, I work out of my home – the key verb in this sentence being “work.” Running up and down the stairs multiple times a day to deal with blood-sugar testing, toxic-waste clean-ups and general checking-in would destroy whatever concentration I’m able to maintain, given the TV hum that’s become a constant presence in the nearly 4 years he’s been living with me.

So, this is what is keeping me up at night and wrapped up in knots during the day: At some point in the next couple of weeks, in a basement conference room, I’m going to have to sit facing a panel of rehab-center professionals and tell them that – despite whatever conclusions they may have come to, and assured Dad of – that I just can’t bring the elderly father sitting beside me back home again.

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Well, it’s been some time since my last post. Mostly, I’ve been swamped with work and my new chauffeurring responsibilities since Dad has lost his license. It’s been a very difficult transition for both of us, and we are (I should say, “I am”) only now marshaling the energy to explore new options. One that I’m hoping may work out is getting Dad to agree to pay for a companion to get him out and about a couple times a week. We talk with one highly recommended possible candidate next week – fingers are crossed.

I’ve been thinking a lot about the concept of blame/fault during this whole process – I just want to shout “It’s not my fault” at him, sometimes, when he tells yet another stranger the sad tale of losing his license and how it just didn’t need to happen, with me sitting 3 feet away. It did need to happen, I want to say – and maybe, just maybe, if you’d eaten more (or, for that matter, any) vegetables and less steak, bacon and Scotch, your body wouldn’t have betrayed you in this way.

More recently, I’ve been working at stepping back and ignoring, which helps limit the explosive arguments the two of us can get into with each other. But removing myself that way and emotionally disengaging feels almost as harmful to the relationship as a go-for-the-jugular blow-up. In a way, it feels like a kind of abandonment.

So, I’ve found myself working my way through a progression of realizations – or, maybe, a realization of the realizations I need to pass through to get to a point of peace these days. It is, as the therapeutic community loves to say, “a process.” But I’m going to share these waypoints, as I see them, more as a way of talking them through for myself than as any sort of prescription for anyone else going through the process.

It’s not your fault. The person you’re caring for just got old, or got sick, or got sick and old. It’s not your fault. Getting comfortable with accepting this one has helped me a lot in the last few weeks – because, if it’s not my fault, then I’m also not responsible for making everything better. I can do my best to listen, help out and present alternatives, but I’m not on the line for making it all o.k., again.

It may be, at least partially, his/her fault. People don’t like admitting this one, I don’t think, because it can come across as blaming the victim, or hitting a guy when he’s already down. But the fact of the matter is that life choices today can affect quality of life tomorrow. People who keep smoking may well have serious issues with COPD 20 years from now. And people like my father, who refuse to change their fat-, salt- and Scotch-laden diets, despite serious kidney disease and congestive heart failure – well, they’ll probably pay a price in mobility, energy and presence of mind going forward.

In the end, it doesn’t matter. I don’t mean that you have to go back to thinking you actually can make it better – I just mean that, if you’re there, you still have to deal with the situation at hand, whatever that might be. You just can’t turn the fact that it isn’t your fault into a position of placing the blame for all current difficulties onto the person for whom you’re caring, or you’ll end up eating yourself up with anger.

Whenever possible, strive for kindness. (Note the caveat “whenever possible.”) This is much easier if you can get to the “it doesn’t matter” point in your head. But, even if you can’t, working toward a point of kindness might help you slowly ease toward that direction – sort of like how smiling when you’re unhappy can sometimes actually turn your mood around.

So, I don’t want you readers to think that I’ve gone through some zen-like transformation in the last six weeks. The anger I described in my last post is still there, I’ve just begun to realize that I can’t keep holding onto it and maintain a workable relationship with my father at the same time. This is one reason why, next week, I’m going to be seeing a therapist who has a sub-specialty in working with caregivers. As has been said in a completely different context, recognizing you have a problem is often the first step in solving it.

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There are many thankless jobs in the whole caregiving process – the follow-up calls to doctors who just can’t seem to call their refill prescriptions into the pharmacy, the endless haggling with visiting-nurse agencies over scheduling details, the daily ritual of urinal cleaning and mattress-pad checking – but for few of these tasks will you be actively cursed. However, participate in the process of having your parent’s driver’s license revoked, and you may find yourself suddenly targeted as an enemy of senior independence. That’s now the situation in which I’m living, in a war that’s swinging between a cold politeness and very hot resentment.

Dad had the second portion of his two-part driving evaluation (for more on the reasons, see Driving Concerns) yesterday. The assessment was carried out by a local rehab hospital, and was much more thorough than the the totally inadequate state competency test he took a year and a half ago. The first session, several weeks ago, focused on cognitive and motor-skills issues. Dad’s performance on visual-recognition, visual contrast and flexibility tests – along with some memory quizzing – put him in what the occupational therapist said was a low-to-moderate risk category (the scale runs from “very low” to “very high”). She recommended an in-car driving evaluation, which we had yesterday.

Dad actually drove mostly o.k. – I was in the car with the driving instructor who rode next to dad and a different occupational therapist, who sat in the back on the passenger side, so she could observe. However, he kept forgetting to look to the left at intersections. About 10 minutes into the 30-minute test, the occupational therapist pointed this out to him, noting the importance of being aware of all potential traffic in a cross-street. He nodded his head and remembered the next time or two, but not more than that, before falling back into the same old pattern.

At the end of the exam, Dad and I sat in a waiting area while the therapist and driving instructor conferred. About 10 minutes passed before we were called in to meet with the therapist. She very politely and calmly explained that in the report she’d be sending to Dad’s doctor, she’d be recommending that he surrender his license. The testing process, she said, wasn’t just about glaring errors or behavior; it was more focused on developing a big-picture profile of a person’s risk for a crash. The results from the cognitive testing, along with the neglectful intersection behavior and his nearly disastrous near-miss several weeks ago, created a risk profile that appeared significant enough to her to warrant this recommendation. If the doctor agrees with the therapist’s report, he simply has to send a form letter to the Registry of Motor Vehicles, and Dad’s driving days will be over.

It’s interesting, this use of the word “surrender” when it comes to driver’s licenses, don’t you think? I mean, don’t you typically think of that word in the context of open warfare? Well, sallying shots were fired in the War of the Rosses at the short, but ferocious, Battle of the Dinner Table last night. Surrender was not any part of this confrontation. Instead, Dad announced his intention to file a technical appeal if the doctor agreed with the therapist. You see, Dad forgot to put on his glasses for the driving test, something he realized while we were waiting for the therapist’s final assessment. In his mind, because his license requires the glasses (which the instructor and therapist really should have known, since they pulled his driving records), it was illegal for him to even be driving at the time, so ipso facto and fruit of the poisoned tree, the results should be invalid.

Because I was already so stressed from having to track down doctors over three different prescription refills, on top of spending half a day dealing with the driving evaluation (and attempting to make progress toward looming work deadlines, as well), I reacted with shouts rather than guffaws. As you – who may well watch just as much Law & Order and CSI as my own TV-addicted father – possibly have already determined, it wouldn’t take a Sam Waterston to figure out that forgetting to put on his glasses only adds to the argument against Dad’s memory abilities. On the plus side, not pointing out this fact to him at the dinner table means he’s more likely to declare this oversight-as-defense in the doctor’s office and add to the case against himself.

In the end, there is no appeal to the doctor’s letter. The doctor doesn’t even need the rehab center report – his signature on the form letter, with Dad’s name in the subject line, is all that’s required – so the technicality argument is moot. The doctor requested the evaluation simply as a way to shelter himself as well as me from the accusation that the license-yanking was being done without grounds. The doc could decide, instead, to maintain the license with even greater restrictions; but, again, the fact that Dad forgot his glasses could be seen as evidence against the wisdom of any further allowances.

As frustrating as the situation is for me, though, it’s impossible not to see the desperation motivating Dad’s straw-grasping refusal to surrender his license. His war really isn’t against me. I’m just the collateral damage in his fight against a much less forgiving foe: time, or, maybe more specifically, aging. He uses the word “independence” to describe what he’s defending, but I think he’s also striking out at shadows he may see drawing nearer. And I don’t think even Sam Waterston could come up with an appeal strong enough to beat such amorphous foes – in court or on the battlefield.

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In the MGM/Nicholas Sparks version of my life with father, the third reel likely would feature a dramatic emotional breakthrough. At this moment of revelation, the walls built from the bricks of our differing viewpoints would come crashing down, and, finally, we’d see and accept each other just as we are. Maybe there’d be a montage sequence of one-last-time experiences, before the Vaseline-coated camera lens brought us teary-eyed to a final bedside goodbye. And then, of course, the life-goes-on epilogue of a favored garden re-blooming or new puppy/baby/lover spurring forward movement.

Readers, while such final reconciliations may be a part of your dreams of what a caregiving experience might grant you and your parent(s), I offer this piece of advice: Don’t hold your breath. I don’t mean these words of wisdom to sound cynical or angry, just realistic. I’ve come to see that we more or less remain who we’ve always been, and expecting late-in-life revelations or reconciliations is a sure path to disappointment. Instead, you’re better off practicing deep breathing and counting to 10, because acceptance provides a shorter route to a successful relationship.

In just a couple of months, Dad and I will hit the third anniversary of his move-in date. Sure, we’ve worked out agreements, some tacit and others openly (and loudly) stated. We’ve gotten more familiar with each other’s rhythms and have learned to give each other a bit more room than was the case three years ago. But a couple recent episodes have shown that the walls between us remain every bit as strong as they were, say, 30 or 40 years ago, and we still lack the ability to see each other as we are – sometimes quite literally.

The first incident occurred a couple weeks ago, and brought back memories of disagreements and perceived shortcomings I didn’t realize still existed (alright – so some of those Nicholas Sparks cliches do have a basis in reality). It was a Thursday afternoon, and Dad came back from his weekly men’s coffee and discussion group at the senior center excited to share something with me. That week’s speaker was an active member in an adult rowing team, part of a competitive senior league. Dad was so enthused at my possible interest that he tracked the woman down after her talk and got the coach’s contact information, sure that I’d be chomping at the bit to participate, myself.

Where did his certainty come from? Well, he’s seen how much I enjoy kayaking through the bays and marshes around the area, so he was sure I’d get even more satisfaction as part of a team of racing rowers.

One thing my father has never understood about me is my aversion to team sports. He has been a competitive jock since birth, in a very real fashion. He and his fraternal twin brother have competed against each other since birth (my uncle won the race out of the womb by a mere 20 minutes, and Dad’s been trying to catch up ever since). Baseball was his life before tennis took over, and then golf became an obsession. When I was 10 or 11, Dad saw how much I enjoyed spending time in the water and pushed me to join the country club’s swim team, and he couldn’t understand that I liked swimming, not racing. Flash-forward 40 years, and it’s like we each aged those same four decades in parallel, with that wall of misunderstanding running between us the entire time. On my side of the wall I sit, paddling quietly through tidal marshes, at eye-level with the birds and crabs, while on his side I’m climbing into a racing skull with five or six others to see how quickly we can cut across a bay, in competition with a fleet of others, led by coxswains calling out strokes, clarion-like, the entire way.

This isn’t to say that I’m not competitive. I won’t shy away from a board game, and can become gleeful at the opportunity to send an opponent on the croquet field. I just really hate team sports. I can handle losing on my own, but I almost hyperventilate at the possibility of being the one weak link that brings a group of teammates down into the losing circle with me. That was the case most of the time in junior high gym class, where I wasn’t just chosen last – I was negotiated over. I’ve never really shaken that experience.

I joined one team in high school, the forensics squad, which is a combination of debate and speech/theater events (it’s a little like “Glee,” without the music – but the hallway slushies in the face are always a lurking possibility). In that setting, though, while an individual’s performance counts to the team’s overall score, the individuals compete in their events on their own, and can win their own trophies. I gained a lot of confidence through participating, which Dad attributed to being part of a competitive team. He didn’t understand that the real boost came from learning how to stand on my own in front of a crowd.

So, when Dad handed me the rowing information he’d so enthusiastically gathered, I thanked him for thinking of me and took it into the kitchen. Conveniently, it was gimlet hour. I shook myself up a cocktail and took in the absurdity – and reality – of the fact that a single sheet of paper could enable a 40-year trip back in time.

The second incident proved a more literal (and funnier) example of Dad’s inability to see me as I am. We were at a neighborhood holiday party in a neighbor’s living room when he mentioned that his recent shopping spree at Joseph Banks had included a Christmas purchase for me – a pair of trousers.

“You can try them on and see if they fit – they’re a 36 or 38,” he said. I thought he must be talking about the length and asked what the waist size was, over the buzz of surrounding conversations. “36 or 38,” he repeated. I nearly spit out my red wine over the neighbors’ white berber carpet.

You see, I stand just under 5’10” and weigh in somewhere between 145 and 150 lbs., and Dad knows my weight. I suppose one might not peg my 30- to 31-in. waist size exactly, and over-estimate to 32 or even, possibly, 34. But 38? At 5’10” and 150 lbs., with that weight I’d look like an upright python who’d just swallowed a basketball. When I corrected his mis-estimate, it was his turn to stop from spitting. You see, he only recently slimmed down to a size 40, after years – decades, perhaps – at 42. He knew I was thinner than he, so he knocked what he thought was a reasonable amount off his own waist size in his selection. He was astounded to learn just how far off he actually was, how different my body was from his.

“I haven’t had a 30-in. waist since I was 17!” he exclaimed. I managed to hold back my observation on the sum impact a lifetime of steak, Scotch and ice cream might have had on that fact. (See note, above, on the benefits of breathing deeply and counting to 10.)

I admit that these two examples are a bit one-sided, because there are possibly any number of times when my vision of him has been derived from my own mirror. And, it’s possible Dad and I may yet have that third-reel epiphany with each other; but time doesn’t hold still – he turns 89 next month – and that’s just not the denouement I anticipate for this script. Instead, we probably will continue as we have until now, lives running in parallel, but not together, in a relationship supported in part by a dividing wall the years have only strengthened.

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After years of feeling certain I suffered from major mold allergies, I recently decided to put my potential hypochondria to the test. Yesterday morning I visited an allergy clinic and learned my symptoms were more than imaginary, as the test kit’s puncture spots spelled out the diagnosis in little braille-like welts on my arm. Multiple mold varieties, along with dust mites and dog dander appear to, well, get my dander up. After next week’s second-round testing, I’ll start in on a series of immunotherapy. It all seems a bit eye-of-newt, tail-of-frog to me, but getting shots of progressively larger doses of these allergens should help my immune system become a tad more friendly to those substances when I breathe them in naturally.

Driving home from the clinic, I began drawing humorous ties between allergies and caregiving (“How are mold allergies and elderly fathers alike?” – “They both grow on you, over time – ba-dum-dum”). And checking in with Facebook friends once I got home, I joked that in next week’s appointment I was going to ask the nurse if they had a test for 88-year-old-father allergies. I got some “like”s and smiley faces in return, and let the thought pass. But then, while stripping my bed down to the mattress in my newly launched crusade against dust mites, I began thinking the metaphor actually made some sense.

In my limited consults with Dr. Internet, I’ve learned that it’s not that unusual for allergies to hit us as adults (and, if any of you readers are immunologists – your correction of this explanation is welcome only to the point that it doesn’t muck up my metaphor). You can be tripping along through life, smelling the roses willy-nilly, until one day you sneeze so hard you blow all the petals off. Irritants like pollen and mold are all around us, and, in low doses, our system might pay them no mind. But if, at some point, you breathe in a large enough quantity, you can put your immune system on alert, as it seeks to rid your body of these no-longer-ignorable substances. From that point forward, even limited exposure can force those hearty histamines to muster themselves to your supposed defense.

In addition to the scratchy eyes and swollen sinuses, Dr. Internet told me, such exposure also can result in something called “allergic irritability syndrome.” I identified with this information immediately. I’ve come to recognize that free-floating irritability – the kind that makes me bang on the computer’s reload key repeatedly when a web page is slow to load or yell at the cat for not moving out of the way quickly enough – is often a precursor to a full-blown allergy attack. If I’m savvy enough to pay attention, I can start dosing myself with my over-the-counter meds and avoid more symptoms.

With this new knowledge, I began thinking that maybe we really can have emotional allergies and that I was, quite possibly, allergic to my father. For years – decades, even – I got along just fine with Dad in low doses. A weekend visit, a short family reunion, a special Thanksgiving dinner all could go by with smiles and wishes of good cheer. But then came the exposure that provoked my first emotional immune response, which occurred in the Columbus, Ohio, hotel room Dad & I shared during the road trip in which I moved him from St. Louis to Cape Cod. The previous eight hours in the car, preceded by a packing effort that had taken longer than scheduled and three or four days of apartment cleaning and arrangement-making with my stepsister, provided the fodder. I was taking advantage of the hotel’s wireless connection to check my own email when Dad snapped at me for not jumping fast enough to find out something online for him. If you have physical allergies, you’ve probably had the slow-motion experience of becoming aware of mustering histamines; similarly, in that Columbus hotel room I realized my blood pressure was rising, my chest was tightening, and, somewhere inside me, my bitchiness switch was flipped. Allergic irritability syndrome was in full bloom.

In the time since, the constant exposure of Dad’s 24/7 life with me often has seemed to create a drone in my head, like that quiet buzziness you can get here during the third week of pine-pollen season in the spring. During those times, even the slightest exposure to him can force my emotional histamines to action for yet another bout of irritability. I have the unnerving sensation of recognizing that my bitchy behavior is unjustified, yet, at the same time, feel almost powerless to act differently. This through-the-looking-glass experience can be followed by a cycle of guilt and self-recrimination that only lowers the threshold required to provoke the next allergic response.

So, what does immunotherapy look like for an emotional allergy? For one thing, I’ve been attempting to limit exposure to Dad, or, at least, increase exposure to emotional antigens, by joining the church choir and an area hiking group. And I’m discovering there may be an emotional equivalent to Zyrtec. For lack of a better word, I’m labeling it “kindness.” Don’t take this to mean that I have made a saintly rise above my situation. I still often walk the house as brittle as a frozen twig and as allergically reactive, emotionally speaking, as the Boy in the Bubble, but I’m learning to recognize the onset of my emotional allergic irritability syndrome a beat or two before I open my mouth. If I am then able to take a breath instead of responding immediately to whatever the provocative stimulus might be, I often can respond with kindness (or, at least, humor), and the allergic cycle can be broken. Since I can’t wash Dad away like the dust mites on my pillow cases, this seems my best hope for keeping my emotional allergies at bay.

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People love to pull out the parent simile when I start talking about caregiving for my father – you know, “It’s just like you’ve become a parent to your father.” I beg to differ – just because I clean up after him and do most of the talking at his doctors’ appointments doesn’t negate the fact that he’s still my father and I’m still his son. And, I’ve found, nothing does more to bring back the hurts a parent may have caused in childhood than being the adult child who suffered those hurts in a long-ago past, while also attempting to minimize the hurts that parent may suffer in a very real present.

I apologize for that last sentence’s complicated construction, but I come from a very complicated family. Friends often suggest I develop a PowerPoint presentation to help explain my family tree’s vine-like structure to those entering my life for the first time. Even the simple question, “So, how many brothers and sisters do you have?” can cause me to pause – I could answer “five” or “none,” and either answer would be true. For the literal among you, “none” is the correct answer, because I am the only child of the marriage of my mother to my father. But both of my parents were married to other people before their marriage to each other, and each had two children from those unions. And my father remarried again, after my parents divorced, and my stepmother had a daughter from her first (of three) marriages.

So, the recitation sometimes goes – two half-sisters, two half-brothers and a stepsister. But then there’s the question of how to refer to the younger of my father’s two daughters from his first marriage (one of the two half-sisters) – she was adopted out of the family when she was three or four, and I’ve only met her four or five times since our first encounter soon before my 27th birthday.

As I said, my family is complicated – and so is my relationship with my father. In an earlier post I wrote about the odd ways he’s bounced back into my life, but his absences have had the bigger impact. During the most important physical absence, from the time my mother moved me and my two brothers (her sons from her first marriage) to New England until her death 2-1/2 years later, he was completely absent from my life – no visits, no birthday cards or Christmas presents, no phone calls. Harder still, though, was the emotional absence during my late childhood and teen years. Yes, he was around for the holidays and attended the high-school band concerts and plays, but his heart lived on the golf course (and in the 19th Hole), and he traveled for work at least two weeks a month. This left me with my stepmother, who’d already seen her own daughter (my stepsister) off from the roost. Her resentment and mental illness made the country club’s confines even more attractive to my conflict-averse dad.

Certainly, time has passed since then. My father has become a kinder, more appreciative parent with age. But still, comments come out when he’s angry or frustrated that can turn me from parent to my parent, to his child, at a moment’s notice. So this is yet another point where that simile falls apart. Because, at that moment I can’t help but flash back to the kid counting the years, months and days before he’d be able to leave home for school, for freedom, for good. Now, as a 50-year-old, I’m back to dealing with the man who’s happy to act as ruler of the roost for which someone else is paying the mortgage. And, in the heat of my own anger, I find myself back to counting time, wondering just how long I have to go before my father is, once again, physically absent.

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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 haven’t written in the last couple weeks because there really hasn’t been much to report. I’ve been tending to my broken heart (see previous post), keeping busy with work and, oh yeah, dealing with an 88-year-old who acts much more like a sassy teenager when his meds are all in balance. I don’t mean in a dementia-induced, is-that-my-10th-grade-teacher-down-the-hall kind of way. This is more in a nyah-nyah, watch-me-go-joyriding-in-the-car kind of way.

For the first few months of this year, January to mid-April, as he turned the local ambulance into his own personal shuttle service, Dad showed no interest in driving. He was weak, unsteady on his feet and prone to low-blood-pressure-induced wooziness, and he was perfectly content to have me taxi him from doctor’s appointment to drug store to his semi-weekly poker games at the Council on Aging. The last med shift, though, seems to have straightened out the low blood pressure, at least for the time being, and his new surefootedness has brought with it a cocksure attitude change.

He began agitating to drive again about a month ago and brought it up with the doctor about a week later. You may or may not recall that his last hospitalization in April involved a nasty eye injury. He was due to see the optometrist about a week after the the doctor’s appointment. The doc said he needed to get the optometrist’s approval before he started driving.

The next Saturday was the day of my dog Bart’s awful accident, and a good friend took me out for a long sightseeing drive, to just get me away from the house. When I returned, I learned that Dad had driven himself to lunch. The restaurant was less than a mile away – just around the corner, really – but the fact that he’d broken the bargain to wait until after the optometrist’s exam set me off. Loudly. He professed just as loudly that he had no recollection of any such conversation in the doc’s office.

I stormed upstairs and left for church the next morning before he got up. I got home to find that he’d driven himself to breakfast at the coffee shop about a half mile away. I decided against re-hashing the argument, appeasing myself with the knowledge that he seemed to be sticking to the immediate neighborhood.

Then, a week later, after a two-hour torrential downpour, I went out for a few hours to run errands. When I came back, that morning’s rain made clear that Dad’s car had been moved again. Figuring he’d taken himself to lunch at the restaurant around the corner, I shook my head, gritted my teeth and tried to just let it go. A couple hours later, while fixing dinner, I stuck my head into the living room and asked him if he’d gone where I thought he had.

Nope. Instead, he’d driven 10 miles down the road to another of his favorite dining and drinking spots, had his fill and headed home. Steam began rising metaphorically from my ears, to blend with what my pasta pot was producing.

And had he been wearing his glasses while driving? Nope, again.

Now, Dad got the glasses two years ago, soon after moving out here. After he’d failed the vision exam at the Registry of Motor Vehicles and been told he had to see an optometrist before they’d even talk to him at the RMV again.

So, now he was out on the road, without the glasses that were a condition of his license, only a month or so after having put his thumbnail through his eyeball (sorry for the graphic image, but the point had to be made), and before ever being given the all-clear from the optometrist to drive at all.

The next 10 minutes are something of a blur – I believe I remember using the words “boneheaded,” “irresponsible,” “disrespectful,” and “dangerous” multiple times, along with a fair sampling of my more picaresque vocabulary. His responses were all along the lines of “I don’t need the glasses” and “Nothing happened, so what’s the big deal.” In other words, exactly what a 15-year-old who got caught driving without a license would say. The only thing that seemed to finally shut him up was the observation that, had there been an accident, his insurance company would have been within its rights to refuse to honor any claims, since he was violating the terms of his license. Since I’m now doing some freelance work for an auto insurance company, I was able to throw in the related factoid that the average accident hospital claim now stands at $38,000 – an amount he’d have to come up with in cash, should he injure someone while driving without his glasses.

When we finally saw his optometrist three days later, I had to play teenager’s dad all over again, asking the doctor – in front of Dad – whether he was, in fact, required to wear his glasses. She restated the obvious -yes, it was a condition of his license. Oh, and by the way, his right eye needed a laser procedure to clear up some cloudiness, so the glasses were even more important.

I’ve since retold this story several times to folks my age or older who’ve also been parents. They all shake their heads, roll their eyes and mutter whatever their ethnic equivalent of “oy” might be. “Yep, you’ve got a teenager on your hands,” they then say.

The more I’ve thought over this incident and others, though, the more I see a motivational difference for this dumbheaded behavior that the situational similarities can gloss over. Teenagers, I think, are just so anxious for the future – the freedom and self-sufficiency they see hanging just out of reach – that they’re willing to leap over dangerous chasms to grasp for it. Just the opposite is true for Dad and other seniors experiencing their second adolescence, I believe. Instead of reaching out, they are working with all their might to simply hold on to what they have now, because at their stage in the circle of life, moving forward looks more like moving in reverse.

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