Category Archives: Caregiving

Parting Gifts from my Father

My father passed away on November 23, 2009.  On the same date a year later, my husband and I flew to Monroe, Louisisana, my family home town, to plant my father’s ashes in his native soil.  It took the Thanksgiving holiday to enable all the scattered siblings and cousins to collect in Monroe for the mini-reunion that my sister planned around the keynote event – my father’s final concession to a force greater than himself; who even knew there existed such a thing?  I thought all the gifts from my father had been delivered prior to his passing, but he had saved three for this final parting.  He must have known I would need them.

I was anxious to get back to my home town and see my siblings and other family, but I had enjoyed a whole year without having to deal my father, and to finally be on this journey was stressful.  I could not ignore that the trip was in large part about him.  I was distracted and moody all day of our return travel, and wrote that off to subconscious anniversary-itis, but I was stunned when I burst into tears as the plane touched down at the Monroe airport.  I had to cry until whatever was expressing itself was spent.  Afterwards I was still upset; it felt like I was going to have to face my father one more time, and I did not want to go there.

I looked after him for almost ten years.  When he was 76 and seemed not to be doing well on his own anymore, I convinced him to give up his long time home and independence and move hundreds of miles to a house around the corner from me.  That was when we began our careful dance with his dementia/psychosis which slowly evolved over the next 10 years into a crippling choreography of mutual sadness and pain.  My father had been a passionate and expert dancer in many styles, but I had to lead in this dance, while pretending all the while only to follow.   His moves were about trying to stay on his cognitive feet while his illness conspired to trip him at every turn.   My moves ranged from covertly propping him back up whenever he stumbled to side-stepping his hurled objects and expletives.  A year after his passing, I needed for the memory of that dance to go away.

It was Tuesday when we arrived in Monroe.  Wednesday and Thursday were balmy days in the 80’s, full of family and food, especially Thanksgiving.  The atmosphere was fun and easy and I was relaxed.  Friday, our cemetery day, dawned windy and a sharp 38 degrees.  An unwelcome anxiety woke me that morning.  We had no particular schedule; it was just my siblings and I and two cousins who were going to do the deed; no service of any kind, as per my father’s request.  I asked my sister if we could just go and get it over with and then all retire to some warm, steamy diner for a comfort food wake.  She said there were no such places that would be open the day after Thanksgiving.  She was heating up cinnamon buns and pigs-in-blankets for breakfast.  I never eat those kinds of things, but I ate some, and they made me feel more anxious.  As we were mobilizing to leave for the cemetery, I opened a bottle of red wine and poured a jelly glass full; it was fortification against the cold, I announced, but that was definitely the lesser part of it.

The Liberty Hill Primitive Baptist Cemetery is a 20 minute ride out a little two lane highway, then another 10 minute ride down a small road that runs through remote woods and small farms.  It is located between Farmerville and Sterlington in Union Parish.  It is where my mother’s side of the family is buried, dating from the 1850’s.  The delta land all around there is flat as a pancake, but the cemetery is on little hilly rise, making it literally a heightened place.  As we wound down the small rural road the first of my father’s parting gifts arrived – the white mule.

My play, The Picnic, is set in a small Louisisana town like Monroe.  The main character goes looking for an old country cemetery where her family is buried.  She has not been there since a child and only remembers the landmark for the turn-off being a white horse standing in a field on the right.  Forty years later, she drives along, sees a white horse in a field, turns right, and finds the cemetery.  I had not been to Liberty Hill Cemetery in perhaps 30 years myself, and had never driven there, so I had no memories of how to get there, landmarks or otherise.  As we drove along, suddenly on the right side of the road was a small pasture.  Standing in the middle was a white mule.  A little further past that on the left side was another white mule in another pasture.   A backup landmark in case I missed the first one?   A small bubble of coincidence-wonder was growing in my mind, edging out some of my anxiety.  Note to playwright; change the white horse to a mule – more evocative.  Parting gift Number 1 – thanks, Daddy.

We buried my father’s ashes next to those of my mother and the whole time I tried to float above the scene, to not become emotionally engaged in what was really happening.  I wanted to be past this, big time.  Due to the cold, we did not linger and quickly got back in our cars to go home.  As we stopped at the little two lane highway which led back to town to the left, I looked right and saw, not 50 yards down the road, a low slung, tired looking building with a sign which read “50’s Diner”; a few cars in the parking lot indicated that it was open.  Here was the diner I had longed for since early that morning.  It took some pressure to get my sister to turn in that direction and actually pull into the lot in front of the diner.  It did look a little less than appetizing, but it was an open diner and I was determined.  When we walked inside a menu board greeted us with a picture of Elvis, the specials of the day, and a list of a dozen available homemade pies.  The place was warm and redolent of fried food and baked sugar; a more perfect balm for my sad soul could not have existed that morning.  Sure, it hadn’t been redecorated in twenty years, and probably not dusted too well in five or ten, but it was heaven at that moment.  I had the pulled pork sandwich with sweet potato and jalapeno fries and a big fountain Coke; perfect comfort fare for a Southern wake.  Parting gift Number 2 – thanks, Daddy.

Everyone enjoyed the diner food and the cozy atmosphere.  Whatever pall I had felt hanging over the morning was lifted and we all chatted up a storm.  I was happily listening to something my cousin, who was sitting across the table from me, was saying, when my gaze wandered to a countertop behind her.  Propped up there among some pretty awful geegaw junk for sale was a book; it’s title read “Smith Family Recipes.”  Smith is our family name.  The cookbook was a self-published weird conglomeration of a certain Mrs. Smith’s favorite recipes, and exemplified the best of white trash cuisine.  Most of the ingredients in almost every recipe came out of a can, except for the grated cheese and the marshmallows.  Ro-tel tomatoes figured prominently.  There were recipe contributions from some of Mrs. Smith’s extended family; one of these called for a trip to McDonald’s for a happy meal.  A picture of Mrs. Smith showed her to be a grandmotherly type, maybe even a distant backwoods relative – who knows?  In my same play with the white mule, a grandmother’s recipes figure prominently as a throughline of family culture and memories, and as I sat there with my family enjoying some not-quite-so-trashy Southern favorites, I recognized my father’s third gift: that I was in the right place at the right time – a warm Southern diner on a frigid cemetery morning.

These personal parting gifts told me that my long journey with my father was officially over. To calm all my fears, he had provided coincidence, comfort food, and a cookbook to take home as a reminder that although he was gone, he had not forgotten me that morning.  The sweet potato fries were an extra little bendiction, and maybe even a belated Daddy nod of thank you.

The Service Dog

My husband and I have always kept two dogs at a time. For the dogs’ sake, and ours, the symmetry of a family of four always seemed to work best. When one of our dogs would pass, another one would somehow show up to take it’s place. There is never a shortage of good dogs needing good homes and they always find us. The most memorable of these was Otis, a true rogue and poet. He was a houndish mutt of such profound presence and personality that after he passed, his absence left a big hole in my life that no two normally wonderful dogs could fill. After our new second dog had found us, I still felt an aching loss. There just wasn’t enough dogness in the house. I toyed with the idea of adopting a third dog, but balked at the asymmetry and the extra responsibility. Instead, I decided to investigate being a puppy raiser for a service dog organization. Puppy raisers raise and train the dogs until they are mature enough to go to advanced training and then placement with their life partner. As a puppy raiser I could have a third dog, but just for a year or so. This appealed to my emotional need of the moment and gave me an out down the road if indeed three dogs turned out to be more than I cared to deal with. Plus, I would be nurturing a helpmate for someone who needed that dog much more than I did; a good cause combined with breathtaking reasoning and no small amount of selfish neediness. Danger, Danger.

Researching online, I found a Florida based organization that provides service dogs to people with mobility disabilities, mostly wheelchair users. I sent the group an email inquiry about puppy raising, and the director called me the next day. We had an hour long chat, which, unbeknownst to me, was an interview. At the end of the conversation she informed me that I could pick up my puppy in two weeks. I panicked. I had done lots of obedience training with my own dogs, but this was a whole different level of training responsibility. The director assured me I would do fine, and that I would be provided clear guidelines and support for raising my dog from an eight-week old butterball peepot to a mature and capable service dog.

Two weeks later we drove up to the middle of the state and picked up our puppy. Labrador and golden retrievers are the prominent breeds used for mobility disability service dogs. These dogs often act as hands and arms for their partners, so having a built-in passion for retrieving and carrying things in their mouths is a necessity. I had known several pet goldens in my life, and based on all of them, I disliked the breed. I thought they were a stupid and slobbery breed, so I was disappointed that we were given a golden puppy and not a lab. My husband pointed out that this should be seen not as a disappointment but an opportunity, that my prejudice was being tested. Love those tests.

He was right, of course. Raising that dog was a revelation. I would like to claim that I also trained him, but he seemed hard-wired from the beginning to know the list of thirty verbal commands I was to teach him, not to mention the various tasks he was to master. Every time I taught him something new, it was if he had been waiting for me to learn the command so he could then show me how it was done.

Retrieving dropped things and giving them back to their partners is a big part of what the mobility service dogs do. I quickly learned that whenever I dropped something in the house or the studio, which was often, I should not pick it up myself. When this dog heard the sound of anything hitting the floor, he would come running to retrieve it and hand it back to me. If I had already picked it up by the time he got there, he would look at me like I was the one who needed better training. He was the server, and I was the servee. That’s how it worked, otherwise I was interfering with his life’s mission and passion. I would have to drop the thing again so he could pick it up and give it to me, thus setting the matter straight. One day I had a guy repairing an upstairs window in my house, and he dropped his screwdriver down onto the patio below. Who knows where the dog had been until that moment, whether inside or out, but he obviously heard the sound, came and figured out that the screwdriver was the dropped object, and figured out who must have dropped it. By the time the guy had climbed back in the window and reached the top of the stairs to go down and look for his tool, the dog was coming up the stairs with the screwdriver in his mouth to return it.

The constant accompaniment to any kind of service performed by this dog was a wagging tail and a big golden retriever smile. The only time the dog looked put out was when you didn’t let him do something for you. He was always thinking, trying to anticipate your next need so he could meet it before you asked him. We often took him with us when we went out at night, much to our two personal dogs’ resentment. Socializing the dogs to know how to behave in public, in stores and in restaurants, is important. Whenever we were preparing to go out, he would stare expectantly at us, tail wagging, asking to go along. One night I was getting dressed to go out and he gave me that inquiring look. I told him yes, he could go with us this time. Elated, he dashed off down the stairs to wait for us by the door, or so I assumed. A few minutes later he reappeared with my car keys in his mouth. He had found my purse, wherever I had left it downstairs, and had gotten the keys out to bring to me, knowing I would need them next. This was not something I had taught him to do.

We ultimately raised and trained four service dogs, two goldens and two labs. Contrary to my previous prejudice, I loved the goldens. They were very serious about their work and therefore the easiest to train. But I loved the labs, too; they had a better sense of humor about the job. It was as if in the middle of learning a new task, they had to stop every so often to tell a joke. We would get to the same end result as the goldens, eventually, but only after much mutual cracking up along the way.

When you finally deliver your mature dog back to the organization for advanced training, it is best if you leave with a new puppy in your arms. This helps ease the wrenching separation you inevitably feel from the dog you have loved and nurtured for a year an a half. You can’t focus on feeling sorry for yourself when you have an un-housetrained eight week old puppy on your hands. Yes, turning the mature dogs in was heartbreaking, but the joy and excitement of starting over with a new puppy was huge. The challenge and fun of preparing them to serve their future partners was magical. All four dogs were placed with wonderful partners and I see them from time to time at reunions. When we meet again there are ear to ear smiles on everyone. Although the dogs remember me and we have a big noisy, slobbery love fest for a few minutes, they now have a meaningful mission in their lives and a partner that they are devoted to. Their partners have in the dog a best friend who assists them to be more independent, and who gives them unconditional love and chronically cheerful companionship. By puppy raising I got to make a profound difference, for possibly the only time in my life, in eight other lives, human and canine. It doesn’t get any better than that.

When I turned in my last service dog, I didn’t bring home a puppy. It nearly killed me. During the tenure of the last dog, my father had moved down into his own home around the corner from us. Seeing him everyday instead of only talking to him long distance, it became quickly apparent that what had seemed for years as simply the eccentricities of old age was something more serious. His now obvious dementia made him require more of my help than we had anticipated. When everyone asked why I hadn’t taken a new service dog puppy, I joked that I didn’t have the time and the energy to train a service dog and my father at the same time. Not a very funny joke, as it turned out.

I see now that all those years of training the dogs was just a set up. It’s like the service dogs truly anticipated what my future needs were going to be. It was really me who needed and received the appropriate training so that I could become a service dog for my father. This is what I tell people, but this is not a joke, either. I don’t have children, so I had no basic parenting skills like patience and effective communication with an uncooperative being. My father had taken care of me when I was young, but now the roles were reversing, quickly, and suddenly it was my job to anticipate his changing needs and to serve them. To call it a learning curve is ridiculous. This experience has been more like a monster rollercoaster ride where you are constantly in fear of being thrown to a horrible death, or of surviving only to throw up all over yourself and everyone around you.

What the service dogs taught me is how much better cut out for caretaking they are than I am. The dogs could not teach me how to be naturally happy in this job, but they did teach me how to do it well. Their secret is that, unlike me, they would never even think of trying to fix someone’s disability; that kind of effort only frustrates everyone involved and makes them all unhappy. Instead, the dog’s sole focus is to make their partner the most successful person with a disability they can. It took me a while, with much frustration, but I finally got this. I cannot fix my father’s aging or his dementia. Instead, I am trying to make him the most successful old man with dementia I can. This isn’t a job I love, but it is gratifying, at least. Success for my father means his being able to continue to live alone in his house. It means eating nutritiously, getting daily exercise, and being safe. Success is his not being made to feel dependent on someone else for all those things, although he is. Success means not having his lack of memory pointed out to him, or putting him in confusing, thus embarrassing, situations. Success is his being left alone to his own thoughts, no matter how scrambled they are. Everyday, as I repeat the same thing to my father or answer the same question for the umpteenth time, I think of the service dogs, tails wagging madly as they happily repeat the same task over and over and over. The dogs retrieve dropped objects; I do the same with bits of my father’s life. I retrieve lost words and moments of awareness. Unlike the dogs, I have to make an effort to smile as I’m serving, something they do automatically and sincerely. I have to admit, though, that when I do smile, the burden becomes much lighter.

Out of necessity for his well being, I guide my father through his daily life now, but I try to make it seem like I am no more than tail-wagging companionship. Ironically, I think I am like the golden retrievers I trained, taking it all a little too seriously. I need to be more like the labs; I should lighten up and learn a few jokes.

10/10/2009

The Crossword Puzzle

Every Sunday I tear the crossword puzzle page out of the back of the NY Times magazine.  The following Sunday I tear out the answer page and staple the two together and stack them on a shelf.  Granted, if i get through the whole puzzle with out having to consult the answers, it’s not a problem, but let’s face it – I’m not Bill Clinton.  I work the puzzles in pencil, and I am never going to get 1) sports trivia, 2) contemporary television trivia, or 3) the name of any of those damned little Eastern European rivers, lakes, or bays.  I like the Sunday Times puzzle because it is hard enough to exercise me, but not impossible to do, and I like the cute little inner puzzles – it’s like working two muscles groups at once.  And thankfully, the magazine paper is very eraser friendly.

Whenever I am going anywhere that is likely going to involve any waiting, I grab a couple of the stapled puzzle sheets and pop them into a pretty leather folder (purchased just for this purpose) to take with me.  As soon as I sit down to wait for whatever it is that constitutes that day’s exercise in delayed gratification, I take out a puzzle to work on.  They are great for traveling, too.  They are sufficiently engrossing that they even make flying tolerable.  My fantasy vacation is to be lying by some gorgeous pool with nothing to do but work these crossword puzzles all day, with a cute pool side waiter in close attendance.  An Eastern European waiter with a degree in geography who knows sports and TV trivia would be perfect.

I started doing the Sunday Times crossword years ago when I was losing my vocabulary.  Because I am a visual artist, my work is nonverbal, and although I listened to the radio in the studio and talked frequently to the dogs, my vocabulary skills were diminishing.  I began finding myself in conversations where, in the midst of making some profound point, I wouldn’t be able to think of just the right the word I wanted to use.  I hated trying to be clever and all of a sudden sounding ditsy.  So, I turned off the radio, started listening to audio books instead, and began doing the Sunday Times crossword puzzles.

I have a collected stack of these puzzles because weeks can go by when I don’t work on one, and depending on individual wait times, I may work on the same one over the course of many waiting room stays.  Still, my vocabulary has improved tremendously.  I catch myself using words that sound so appropriate and cool that for a moment I don’t much care if they’re quite the right ones or not.  Sometimes in conversation a word will pop into my head that I didn’t even know I knew, but that sounds great; I use it with a question mark, asking the other person if indeed it sounds right, and regardless of whether they know or not, I score big language points all the same.  Obviously my subconscious loves the oblique and mischievous relationships between many crossword clues and their answers, and she keeps a little notebook of the most artful and fun ones for reference.  I can be blathering on about something in the most pedestrian way, and she will suddenly whip one of these obscure words out for me and toss it in the ring.   It never fails to catch me, and often the other person, off guard, and so I either wind up sounding like William F. Buckley or Mrs. Malaprop.  Never mind; they are both heroes to me.  Ah, language is a many splendored thing.

The trick to crosswords is the fact that way too often, a clue will have several possible answers, all of the right letter length.  Without any letters filled in from auxiliary words – wait, contiguous words; no, adjacent words – it’s hard to decide which answer to use.  So you try to fill some of the adjacent words – no, peripheral words – to get enough letters to solve the clue.  Of course, sometimes there are several possible answers that have similar letter constructions, so you can still be stymied and put in the wrong word, which then messes up your chances of getting the peripheral – no, intersecting  – words right.  In other words, solving the puzzle can often be a mind boggling conundrum of obfuscating clues and obtuse answers.

I didn’t know at the time I started doing crossword puzzles but I was in training for a different realm of vocabulary challenges. Trying to understand the workings of a mind with dementia is literally a crossword puzzle.  Sometimes the course of my father’s thoughts seem obvious, and then the next moment you realize he’s made a sharp left turn and you’re still going straight.  Suddenly we are no longer on the same page.  It doesn’t help that he has lost much of his vocabulary.  Often you can’t get a direct clue as to what he is thinking or wants to say, because he no longer knows himself, or worse, he knows but can’t come up with the words he wants to express it.  That’s when you have to look for intersecting  – no, neighboring – clues; facial expressions, hand gestures, what we were just talking about, or which way the wind is blowing.  I offer up word choices that I hope are correct until he agrees with one.  If he doesn’t like  any of them, I offer a multi-syllabic zinger that I know is not right but that sounds impressive, and he will always go for that.  He knows it’s not the word he wanted to say, but at least he appreciates the joy of it’s sound and is happy to use it.   That may seem dishonest, but by the time we reach that point, he’s forgotten what he was talking about in the first place.  He used to be an avid reader and I can see that he still enjoys saying a great word.

With this particular puzzle, there is no answer sheet to peek at for help. The way I cheat sometimes is to agree with whatever he is trying to say and then change the subject. I am trying to learn his vocabulary of recurring memories and concerns, and from that, I can often fill in the blank for him.  If not, I move on to the next set of squares and hopefully an easier set of clues.   My father’s dementia is a puzzle we must work together.

Now if only I could get hold of that cute pool side waiter.

The Club

Born in 1953, I have always been a member of the Baby Boomer Club.  Just recently, I have  joined another very populous club, the Baby Boomer with  Aging Parent Club.  You don’t apply for membership to this club; you are chosen by fate.  For that reason, new members like me are initially confused and somewhat noisy, clamoring about our trials and concerns like startled geese.  We tend to talk too much about the club and the details of our initiations whenever anyone will listen.  I have a friend who was inducted into a different club, the Baby Boomer with Young Child & Aging Parent Club.  She’s always too tired to talk, though.

I have two good friends whose fathers are the same age as mine, and we were surprised and delighted to find that we had all been inducted into the club at the same time.  Our fathers live in different parts of the country and don’t know each other, but they all facilitated our memberships.  The password for this club is the phrase, “And how is your dad doing?”  When someone asks you that, and you hear yourself asking them that back, you know you are in.  Just a couple of years ago, our three answers to that question would have been very different.  Now they are pretty much the same.  At first I chalked this up to just our all being in the club and adopting some catchy members’ lingo, but the larger truth has finally dawned on me: our fathers have joined a club of their own.

Last summer was a big one for our fathers.  They all broke one of their parts.  C’s father fell and broke his hip.  J’s father fell and broke something in his heart.  My father fell and broke his mind.  C and J’s father’s falls were actual, and were quite possibly caused by their parts breaking first, not the other way around.  My father’s fall was figurative, but ironically was much further, there being no hard surface to stop his descent.  C’s father’s hip was repaired and he went through rehab and is back home again.  J’s father’s heart was repaired and he went through rehab and he is back home again.  My father’s mind was not exactly repaired, but it was given a new coat of pharmaceutical paint and from the outside it is looking much better, although some cracks are still visible if you know where to look.  Although he never  physically left, he is home again, too.

It seems our fathers’ broken parts experiences, however diverse, was some sort of initiation into their secret club, because they all seem to be sporting the same badge, a virtual bandage, these days.  Since last summer, our very different fathers have begun to resemble each other more and more.  Like old couples, or people and their dogs.  Comparing notes with my friends has revealed that our far apart fathers mirror each other without trying, or even being aware of it.  We children watch this and simultaneously marvel and cringe.

Members of our fathers’ new club all adopt the same reserved body language.  They are no longer very expressive.  Our fathers seem to like the secrecy aspect of this club and don’t talk about it.  In fact, they don’t talk much at all.  Maybe they take a vow of near silence when they join up.  They must communicate instead via telepathy, with each other perhaps, and surely with the club president, the Grand Poobah,  whoever that is.  This guy must be quite charismatic, because they spend more time listening to his covert communications than to any of us.  They are so taken with this new club and it’s activities that they have all given up their previous interests, like reading, watching television, and any kind of puttering.  To us, they look profoundly inactive, but if you watch their eyes, you see that they are actually quite engrossed in secret club business.

One thing I’ve figured out that my father is doing since joining the club is going through the storage boxes of his life, tossing out old files of memories.   My father was always a pathological pack rat – he never threw anything away – so this activity, cleaning out and downsizing one’s archives, must be a club mandate.   Every now and then he will come across something of interest and will mention it in passing, but then it gets tossed out, too, never to be heard of again.  I suppose this is a good thing, that he is finally able to get rid of a lot of old stuff he’s never going to use again, but it distresses me.  Although these memories are his to do with as he pleases, I worry, in my own pack rat way, that he, or I, might need some of them some day.  He seems indifferent, however, obviously more interested in club opinions than mine.

I also think this club has a major Buddhist slant, because contemplative meditation seems very popular, if one were to judge by our three fathers.  None of our fathers would have been so taken with this formerly pooh-poohed practice unless it was prominent in the club schedule.   Prior to their joining this club, they never had time for this sort of new age silliness, much less interest.  They would have snorted at the idea of just sitting quietly for hours, and only ever puttering in the basements and garages of their consciousness.  Now they find time for little else.  It also seems they are expected to practice restraint in their bodily pursuits, especially eating and drinking.  The club clearly promotes an ascetic discipline.

We kids have a really hard time with this.  Our father’s absorption in what we can’t understand is frustrating.  We are all still hooked into an exterior life model, all running around and cramming our waking hours with what we hope is important stuff.  We still credit conversation, reading, and even television with making valuable contributions to our awareness, and we don’t understand why these things no longer fascinate our fathers.  Perhaps we are embarrassed that that’s the best we can do, while they have discovered the real deal.  The world of external information obviously has nothing to offer them anymore.  They seem to get all they need from the club newsletter which is streamed directly to them in telepathic code.  We remain outside and clueless.

That we, as chatty club members ourselves, want our fathers to now share information about this secret club of theirs is hysterical.  When did they ever do the “sharing” thing?  Looking back, we now see that they obviously started the club’s strenuous and covert initiation process a long time ago.  The major falls they all took last summer were precipitated by similar minor ones occurring over the course of preceding years.  Some of those stumbles we knew about, but brushed off to the various vertigos of old age.  Many more they never told us about, hiding the evidence and always pretending they were up to nothing in particular.  This is required in the by-laws of the club, of course, it being a clandestine order and all.

This would seem like a severely austere club but for two things.  One, members are encouraged to eat lots and lots of ice cream.  Two, they are instructed to crack wry one-liners when you absolutely least expect them.  We think they are trying to amuse us and we are charmed, but really this is their subtle way of making fun of us and our constant bugging them with feeble intervention attempts.  Our three fathers are all very intelligent men, so we should trust their judgment about this club and leave them alone.  At least we can take comfort that they all joined a club with a sweet tooth and a sense of humor.

So how are our fathers doing?  Despite how we, the progeny, want them to be doing, we have to allow them to be how they think they are; just fine.   They look quite content as they listen past us to catch some communiqué from the Grand Poobah, or look past us to peruse the most recent newsletter.  Often, their hands are moving slightly and mysteriously, as if they are all but fingering invisible decoder rings.  They are obviously only putting up with us and our fussing around anymore, but the club is big on good manners and so our fathers are gracious in their tolerance.  We struggle painfully with all this; they don’t.  Perhaps we are just resentful, feeling left out and dismissed,  because despite having our own club, none of us has been invited to join theirs.  Yet.

An Awkard Stage

My sister recently sent me some old family photographs she had come across.  There was one of me, taken when I was twelve or thirteen.  It is a horrible picture.  I look like an adolescent alien trying to emerge from inside an angular bursting-at-the-seams child, with bulging elbows and knees and nose and teeth.  I had new heavy-hardware braces then, and a criminally bad haircut with short bangs.  I have never looked good in bangs.  It was one of those captured-in-time photographs that you can’t burn fast enough.  My sister had stuck a note on it which jokingly read, “an awkward stage!”, which should win her a prize for the understatement of the century.

The pictures of my awkward stages in life greatly outnumber pictures of me where I look fairly put together.  I always liked to think i just wasn’t photogenic, but now that I think about it, my life has been a steady stream of awkward stages.

Once when I was complaining about having to have my picture taken for a magazine article and knowing˙ it would be unflattering, a friend told me how to fix that.  He said to look straight into the camera and think “I am really good at what I do”, and the picture would turn out great.  Damned if it didn’t work.   That made it clear that what had been photographed all along was not my face, but my deep seated insecurities about, oh, everything.  If I think back through the rogues gallery of my most unflattering images, I recognize that unfortunate look in each one of them.  The most flattering images I recall I realize were taken when I was relaxed and happy and feeling like I was really good at whatever I was doing.  So now when someone points a camera at me, I try to hold the same thought – I am really good at what I do.  Sometimes it works, but it’s not easy to quickly rodeo all my features under that umbrella, and so, often as not, another awkward stage goes on record.

The silly thing is, I am good at much of what I do.  I have a successful career as an artist, I have a happy and fun marriage of almost 30 years, I have good health, I keep (with some help) a passably clean and organized home, I am a good public speaker, I am practical, punctual, economical, and reliable.  You would think I would be able to take a good picture any old time, but insecure waters run deep.

When I shared this reflection with my sister of the unasked for old photographs, she said, “Oh, you’re just insecure about taking another bad picture!”  Maybe she’s right, because that would certainly be enough.

My husband never took good pictures of anyone or anything until digital cameras came along.  Now that he can see what’s in the frame before he shoots, heads are no longer lopped off and things are aligned as nature intended them.  This is a good thing, except for the fact that he is smitten with his success and is constantly either pointing his camera or his phone at me and anyone else within range. For a while all his pictures of me captured a witheringly annoyed and thus highly unflattering look, so I continued to fulfill my own prophecy.

The camera always took great pictures of my father.  One, he is very handsome, and two, he never doubted that he was excellent at whatever he was doing.  That meant he was always right about everything, which has often been awkward for the rest of us, but never for him.

My father is going through an awkward stage now.   For a decorated WWII fighter pilot with two engineering degrees and three successful careers, dementia is about as awkward as it gets.  Sometimes that awkwardness shows in photos of him now, but not always; for the most part he still thinks he is good at what he is doing.  He knows, however, that he is not doing so well at growing older, and the insecurity that that fosters shows.  He makes choices which don’t serve his best interests, but he can’t see that, so when the results are not good, he is confused and hurt.  In his mind, he is still always right.  I try to keep him believing that, because having lost so much of his former self, the worst thing he can lose right now is his self confidence.  It is all he has left to sustain him through this awkward stage.

Gifts and Presents

When I started taking care of my elderly father with dementia, the word “gift” started showing up a lot.   I would hear someone else refer to their similar situation as “a gift”.  When people asked me how it was going with my father and I would be truthful, it sounded like complaining, so I, too, started saying, “But it’s a real gift to be able to do this.”  So maybe it is a gift, but it is certainly no present.

I was eleven the only time I remember my father giving me a present.  Normally, my mother took care of shopping for and delivering presents, but I wanted an iguana, and my mother wasn’t fond of reptiles.  My father loved reptiles, and so this present, Gus the iguana, was solely from him.  I choose to distinguish here between gifts and presents; a gift can be inadvertent but a present is presented, offered, deliberately passed from one set of hands to another.  A present is deep giving.  My father gave me an iguana as a present.  And it wasn’t my birthday or anything.

After my mother died when I was fifteen, I was well cared for, but there were no presents.   I was provided with necessities by my father because I needed and asked for them, but those don’t count.  Even asking him for things was uncomfortable, so at some point I just stopped.  I baby-sat to make my own money so I wouldn’t have to ask.  I had been accepted to and was supposed to go to a New York art school after high school, but when the paperwork came from the admissions office the summer after I graduated, I found I couldn’t ask my father for the money to register.  I should have considered going to college a right, a necessity, but it was such a big ask, it seemed more like requesting a frivolous present.  The admissions paperwork sat on the dining room table all summer until its various deadlines expired, and so I never left.  There was never a discussion.  I’ve often wondered why he never asked me about going off to art school, something that had been planned for years.  My wiser sister recently pointed out that it was simply because he didn’t want me to leave.  She is two years younger than me, and that summer, she was a rebellious teenager.  She and my father were often not speaking to each other.  As a third party mediator, I filled in the gap for them, I suppose.  Or maybe after my mother’s death just two years earlier, my father couldn’t bear the thought of one more person leaving.  He never said anything about the thick, five hundred pound elephant of a college envelope that sat conspicuously in front of him all summer.  Eventually I threw it away.  I don’t know what he thought about the whole issue.  I’lI never know, because I never asked.  What should have been an major life present to me, a chance to go to art school,  turned instead into another inadvertent gift.  I had to make my own way as an artist.   I had to work harder, take more chances, and put myself and my work out there with no support system.   I had to educate myself.  As a result, I have a wonderful career as a visual artist on my own terms.   My work is unique to me, maybe even odd, but at least it is not the predictable product of an MFA program.  I still regret not receiving the present I expected, but the gift has worked out really well for me.

So, in over forty years of birthdays and Christmases, my father has given me no presents.  He has always said he doesn’t believe in those events, so he doesn’t do presents.  I have accepted this arrangement completely.  I still give him presents, but I never look for anything in return.

In spite of this arrangement, or perhaps because of it, I must acknowledge many gifts from my father, all inadvertent.  I inherited his robust health, a smidgeon of his good looks, his independence, his creativity, his great legs, his love of nature and animals, his dislike for coffee and raw onions.  I also got his agnosticism, his too-fine prematurely gray hair, his control issues, his parsimony, his paranoid intolerance, and his thin skin, both literal and figurative.  Notice how I also got his self-righteous judgementalism.  He has acknowledged most of these inadvertent gifts and he takes great pride in them.  He considers them to be the most desirable gifts one could receive, because they come from him.  That’s one thing I didn’t get from him;  his un-deflatable, self-confident, larger-than-life ego.  It’s something I’ve long lamented.

I still get no presents, but as I am taking care of my father, he gives me gifts he will never even know about.  There are so many they are piling up around me, some as yet unopened and unexamined.  Many are things I did not want and would never have asked for, but these are gifts, after all, not presents.  My father doesn’t do presents.  Gifts just land on you; like bird droppings, you get to decide if they are auspicious or not.  Some of the gifts have proved very useful, and others, though they made no sense to me at first, have become cherished favorites.  Some will never fit me just right, will always chafe and make me uncomfortable, but there’s nowhere to return them.  I have outgrown some of them, but they are always replaced by others.  Who knew that in his old age, my father could bear so many gifts?  Maybe he had them stored up all along, and now that dementia has knocked his guard is down, they are spilling out of their own accord.  Some of these gifts will only be opened after my father is gone, because I know it is only then that I will be able to undo the complicated emotional knots that tie them.

Even if my father had given me wonderful presents my whole life, it’s probable that I would remember very few of them now.  Except for the iguana.  His recent gifts, however, are going to be pretty hard to forget.

Give and Take

Single words are delicious morsels of information.  They are rich with history and meaning.  Despite differences of perspective or language, a word can communicate across vast spaces of time and culture.  We know a lot about things because of the words that make up the intricate embroidery of their descriptions.  There is plenty to be known outside of language, of course, but if we experience or learn something non-verbally, chances are the first thing we do is put that experience into words so we can turn right around and tell someone else about it.  And how we do just that!  It is no accident that humans are the only creatures associated with the verb to blather.

It is always important not to confuse the word with the thing it represents.  A word doesn’t ultimately define that to which it is attached, and so names of things are conveniences, not truths.  Still, words are very important.  Not only for how they sound, but also for how they let us sound off.  Equally important is how words make us feel, above and beyond what they might actually mean.

So, several words have come under my scrutiny lately.  They have been coming up a lot in my life, and they are making me feel things which I want to tell someone about.  Please indulge me as I blather.

The words are give, take, and care.  As words and as verbs,  give and care have a lot in common.  They both imply things like altruism, empathy, and sympathy.  Whichever order you put them in, give care or care give,  they sound nice.  To take seems like the odd man out here, almost connoting the opposite of the other two.  However, when you combine give and take, you get the benevolent idea of parity, of sharing.  When you combine care and take, you get an action that is kindly in an especially deliberate way.  When you switch the order to take care, you get a blessing.

Because of my father’s dementia, I am now officially what the health care industry calls a caregiver. It’s a good enough word; it means good things.  I don’t like it for me, though.  I prefer caretaker.  I know that makes me sound more like a janitor or gardener, but I do all that for my father anyway, so it’s not an incorrect description.  Both titles mean the same thing in this context, so this sounds nitpicky, I know.   Probably no one else cares about this little taxonomical issue except me.  Lord knows my father doesn’t care.  But I do, and if I am going to be burdened with a title on top of everything else, I want it to be right.

Care-giving sounds a little impersonal to me.  Like an obligation.   Like one can be somehow detached from the care itself.  It doesn’t have to be part of you, and won’t be part of you once it is given.  We give things away.  That’s what we say when we want to detach ourselves from our cares – we give them away, toss them, release them.  We give things up for good.  Or we give them a whirl.  We give a shit.  Something gives us the creeps.  The concept of giving can seem so superficial.  Want to give? Just write a check.  We give up.

Care-taking sounds like complete absorption to me.  When you take care, it’s personal.  There is no space between you and your care.  It is a choice, not an obligation, to take care.  You take part in the caring.  You take a stand.  You take your place.  You can take a hike.  When you take action, you do it on purpose and you mean something by it.  If you take ill, it’s serious.  Ditto if you take a fall.  If you are taken by something, it has all of your attention.   If you take a pill, you ingest it into your being.  If you take an object, you take on responsibility for it.  If you take a chance, your whole life can hang in the balance.   A second take can change everything.  I’d rather take someone by the hand than just give them a hand.  Taking is active, involved, personal.  Take a number, and when it’s your turn, you are taken care of.

When I picture a caregiver, I picture someone in a white uniform and thick squeaky shoes. Someone who smells medicine-y.  Someone with an education  certificate and a reasonable car.  Someone who was interviewed and hired.  Someone who was given a job.

When I picture a caretaker, I see someone in practical work clothes with a little grime under their fingernails.  Someone with a set of important keys.  Someone who smells of physical labor, either rigorous or plodding.   Someone who can fix things.  Someone who evolved into the job through hard work and determination.  Someone who takes on challenges.

I’ll concede that caregiver implies an animate recipient of the care being given, like my father, while caretaker connotes care directed towards an inanimate object, like his house.  I think this is just a trick.  Caregiver is a professional term only recently applied to nonprofessionals like me, but caretaker has always represented folks who just rolled up their sleeves and got the job done, no matter who or whatever was on the receiving end.

One cannot define the care giver-taker-doer-provider by way of the recipient, anyway.  As in my father’s case, the animate recipient is just the tiny visible tip of the iceberg that you crash into when you take on this job.  The real treacheries are inanimate and deeply submerged; a lifetime of assumptions (and thus many misconceptions) you have to rodeo and deal with, a minefield of not-very-good choices you have to finesse, and the awkwardness of being stuck in a small lifeboat with someone you thought you knew but who now turns out to be a total stranger.  You become hopelessly entangled in what you thought was a lifeline you were tossing, but which, as often as not, morphs into an anchor chain instead.  Ultimately, the most critical thing the caretaker cares for is not the point person, the parent or whomever, that everyone is focused on.  The real job is to expose and care for all the murky submerged stuff that has buoyed that person up their whole life.  In other words, to best care for the person, you identify and care for all that which constitutes them; their  history and their relationship to it, not yours, thank you very much.  You care for, take care of, that which they care about, the depth and breadth of who they are in their world, however they experience it.  You take care of them, for them.  It’s hard work, but on a good day, you might be tempted to call it a blessing.

I know it’s only semantics, but to me, this is not a job about giving.  It is all about taking.  Taking care, of course, but also taking it on the chin; taking your medicine, the bull by the horns, the last train to Clarksville – or  whatever it takes.