Love and Stripper Poles

dad and daughter dancing

This past Thursday evening was the last free concert-on-the-bay of the season. Jack and I attended all but one of these events. There were a slew of logistical challenges when he moved from the walker to the wheelchair. A lift had to be attached to our car, straps located to tie the wheelchair to the lift. My son is working on a deck so Jack no longer has to get out of the chair twice in order to get him down the steps and into the garage from the house. We now have poles attached floor-to-ceiling in the living room and Jack’s bedroom to help him to pull himself up from the wheelchair and into his lift-chair and his bed.

A lot of people dance at these concerts-by-the-bay. Some dancers are incredibly talented.  Others move like uninhibited fools. Both groups are a joy to watch. Many couples, both young and old, do not dance, but sit and tap their feet or clap their hands as they enjoy the music. If I give in to my desire to dance, my back and hip scream for me to sit down and accept my limitations. If I persist, there is hell to pay for the following two or three weeks.

Since Jack is now getting around in a wheelchair, you might think we are a perfect match, the two of us sitting side-by-side, holding hands and swaying to the music. This is not the case. Jack insists on dancing. Because he has balance issues he tends to fall backward. When he pushes himself up out of the chair and begins to bounce and move, I know he is in danger of falling if he doesn’t have something, or in this case, someone to hold onto.

In fact, he says himself, after each and every dance, “Boy you saved my butt four or five times. I’d have fallen if you hadn’t steadied me.”

When my back simply will not allow me to dance with him, he scoots around in his wheelchair and asks other women to dance, or sidles up to them on the dance floor, rises from his chair, and sways until they reach out to provide him with balance.

This last Thursday, feeling overwhelmed with the logistics of getting him there with the wheelchair, I plopped myself on a bench and studied the dozens of couples sitting together and enjoying the music and the crowd. Some held hands, some talked quietly between songs, one couple threw popcorn to a curious harbor seal. All of them, it seemed to me, experienced the evening together.

I, on the other hand, sat alone while Jack scooted himself to the dance floor, struggled to push himself up out of his wheelchair and then did his version of dancing. People either moved out of his way or approached and offered help, which if they were female, he happily accepted. But he didn’t want help to get back to his wheelchair, oh no, certainly not, he wanted them to provide ballast so he could dance.

I admit, sitting there in a cold mist from off the bay, there was some self-pity going on in my heart-of-hearts. On the way home, after the loading and strapping down of the wheelchair, I asked, “Why couldn’t you just sit with me and enjoy the music from your chair since you knew my back was really bad tonight? Be an adult for once?”

“I just can’t.” He grinned. “I’m a child. Never going to be able to listen to music and not dance. Never, ever, going to be an adult.”

The following night we had friends over for carnitas and margaritas. I had a wonderful time visiting. After dinner Jack insisted on cranking up the karaoke machine. Sometime after the third drink Jack pulled himself up out of his wheelchair using his new pole and began to entertain us with what can only be described as the world’s worst pole dance. Ever. The only thing missing was a thong.

There he was, half lit, unsteady to begin with, gyrating on a pole.

I could only laugh and hug the man. Because you see, while Jack’s inability to be an adult, to accept his limitations, is one of the most frustrating things for me to deal with as this disease progresses, it’s also the reason he’s still alive. He does not give up. Not ever. And, while I would have preferred to spend what may well turn out to be the last concert-by-the-bay we ever attend together, being, well, actually together, that is simply not who Jack is.

Jack is never going to be the guy I sit beside and enjoy a quiet moment.

He’s always going to be the guy wiggling his hips on the geriatric stripper pole.

Posted in aging, caregiver, grief, health, Humboldt County, humor, marriage, Pamela Foster, Uncategorized, veterans, writer | Leave a comment

Karma

Vietnam boogie stretcher lem to chopper

Six months ago, Jack and I sat in a VA doctor’s office and listened as two neurologists explained the diagnoses of Progressive Supranuclear Palsy. We argued with the experts a bit, tried to find another explanation for his many symptoms. But in the end, it was obvious that, indeed, PSP checked all the boxes for what was going on with him.

When we left the office, both of us numb, Jack said to me, “This is Karma for what I did in Vietnam.”

So today, the letter ‘K’ is brought to you by Karma.

In my experience, the philosophy of Karma, wielded by the uninformed, can be a lethal weapon similar to that of the Prosperity Gospel so popular among some American Christian sects. You’re familiar with Prosperity Gospel, right? Essentially, the heresy is that God blesses those who love and serve Him. Therefore I am rich because I am loved by God, and you are poor because, well, God just isn’t that fond of you. Western understanding of karma puts a little different spin on this concept, but it’s essentially the same old victim blaming. If you’re healthy and striving, God loves you. If you’re sick or puny, God is trying to tell you something. Generally this message from the almighty will be interpreted by these folks as your need to see and believe in God in the exact same way in which they view Him.

Now, I am not saying that guilt and trauma and pain doesn’t reside within our very cells. What I am saying is that, while it is good and productive to work at understanding and forgiving ourselves, it is false and unhealthy to think that we ever deserve anything, good or bad, that we get in this life. Jack and I have been married for almost three decades, in that time it has been my privilege to talk to dozens of Vietnam vets about the guilt and shame they carry with them every day.

Every warrior in every war, yes that’s right I’m going to state an absolute here, does things that, in peace, would be unthinkable. This is why I become truly infuriated when people glorify war. There is nothing glorious about war. Nothing whatsoever. If you think that’s not true, you’ve never been in combat and my bet is you’ve never loved a warrior.

I get irritated with Jack a lot. You all know that. But I am rarely truly angry with him. But that day six months ago outside the office of the neurologist, his karma remark infuriated me enough to pull me out of my numbness, and cause me to turn to him and say, “That is complete and utter bullshit. You don’t deserve this diagnoses any more than you deserved the wonderful years we’ve had together. Life happens and we deal with it the best we can.”

Jack is my hero. Not because of what he did in a war in Southeast Asia, but because of his courageous and persistent introspection, his unfailing struggle to spit into the eye of his own demons.

Do I think the combat trauma he’s carried within himself for over fifty years may have contributed in some way to what is now going on in his central brain? I don’t think the possibility can be ruled out.

Do I think trooping through a jungle for months which was saturated with Agent Orange contributed to him developing this particularly virulent form of Parkinson disease? Yes, I have I strongly suspect it did.

Do I think this miserable disease is some cosmic payback for what he did as an eighteen year-old in the middle of a godawful horrible war? NO, NO I DO NOT!

So, while I understand why Jack’s first reaction to his diagnoses was that it was a sort of twisted Godly tit-for-tat for what he did in Vietnam and for which he has never been able to completely forgive himself, I reject the theory outright.

I do not know why Jack has PSP. Nor do I know why we were allowed twenty-five years of adventures most people only read about, or why he was blessed with the intellect and strength and insight to wrestle his demons and become the hero he is. But I know for a damn fact that this disease is not punishment for past wrongs, or the revenge of a wrathful God, or proof that the universe is withholding its positive energy.

Karma isn’t some twisted survivor guilt we pull out to explain every bad thing that happens in our life.

Posted in aging, caregiver, health, marriage, Parkinson Disease, Progressive Supranuclear Palsy, pts, Uncategorized | Leave a comment

Juju Beads

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My winding path to enlightenment, or more truthfully toward survival, is strewn with a discarded string of juju beads representing various religions and philosophies. I have at one time or another embraced Protestantism, Catholicism, Christian Fundamentalism, Humanism, and Skepticism. I’ve even dabbled in Buddhism and Hinduism. I think of these creeds as prisms through which I view the universal light. In my involvement with every one of these religions, there came a time when I bumped up against what felt were the unyielding walls of a spiritual box.

Congregants would say I left the church, backslid, or in the case of Fundamentalism was asked to leave because the pastor identified me as a freethinker, a dreaded female freethinker which is, evidently, anathema. But I frame my experiences differently. I carry with me, from each of these religions, precious concepts, truths, and understanding.

So, if you’re still with me on this post, first of all, I thank you, and secondly, you’re probably wondering what all this has to do with being a caregiver for my husband, Jack.

Well . . . everything.

But, specifically, if you’ll hang with me for another paragraph or two, I’ll share with you an experience I had while deeply involved in Christian Fundamentalism. The Four Square Church I attended reserved part of most Sunday services for prophecy delivered directly from God through individual members of the congregation. And, yes, I’m talking speaking in tongues and being slain in the spirit.

Week after week, an extremely large woman rose, lifted her hands to the heavens and passionately rattled off a string of indecipherable words. When she finished, she promptly fell straight backwards and was caught by her extremely skinny husband. Really, there was something miraculous about the entire spectacle.  Week after week, no one offered a translation of this obviously urgent prophecy.

Throughout the month or two this went on, I attended bible studies and prayer circles and, again and again, heard these good people request prayer for a woman who was a bit too fond of alcohol, or another who needed guidance in the discipline of her children, or divine intervention for a gorgeous young woman with a seducing spirit. We also prayed, over and over, and often led by this same large woman with the weekly message in tongues, for our young pastor who, it was believed, had a whole lot to learn about leading a church.

After seven or eight weeks or this routine, standing quietly swaying in a church filled with people beseeching God and listening to our resident prophet roar out her message, I was struck by the knowledge that I had been given the translation. Except, as a young, relatively new member of the congregation, there was no way I was going to deliver that particular message. I dropped my arms to my side, sat abruptly and kept my mouth shut.

The next week, same scenario, except this time, I spoke the translation of the prophecy I’d been given. It went something like this:

“My people I long to gather you to my breast and pour my love and peace over you like warm salve upon a grievous wound. I yearn to heal you and to lift you to new heights. But you fill yourselves with petty bickering and resentments, old anger, and harsh judgements of my children so that there is no room for me within your spirits.”

My translation may have been a bit more flowery. I read the bible a lot in those days. But that’s the gist of the translation I gave. The congregation accepted that prophecy. They fell to their knees, lifted their arms, and welcomed what they believed to be the Lord’s judgement and blessing.

Now.

Prophecies, or at least this prophecy, was as much for the translator as it was for the congregation. The message has stayed with me and become one of the truths upon which I attempt to build my life.

Since yesterday’s post in which I talked about my dream of sharing a simple, pure moment of emotional intimacy with a familiar but unknown man, the  identity of that man has been revealed to me, as it probably was apparent to you from the beginning. Last night, just as I fell asleep, passed from the waking world to the next, I saw again that large prophet, her hands lifted in ecstasy as she fell backward, caught safely in the waiting arms of her scrawny husband.

Some insights apply over and over in our lives.

The man with whom I long to share each and every moment of my life is, of course, Jack. Furthermore, part of the reason I am currently unable to open myself to moments of joy and love is that I am so busy managing his care, managing him, so exhausted and overwhelmed with his physical needs that there is no longer room within me for the simple pleasures of married life.

Right now I sit in my room, fingers over a keyboard, but in essence, like that old Four Square congregation, I am on my knees, arms lifted to heaven, beseeching God in all his guises to empty me of my resentment, my need for control, my frustration, so that I might enter into those small moments that bring joy to life.

Posted in aging, caregiver, grief, marijuana, Parkinson Disease, Progressive Supranuclear Palsy, pts, Uncategorized, veterans | Leave a comment

Very Interesting

JackDSCN4934

The photo is of Jack in happier, though no less interesting, times.

This morning was interesting.

The dog ate Jack’s hearing aides. Not the batteries, thank God, but the little, grooved flesh-colored pieces of plastic and technology are now in many, many bits. Evidently Jack set them on his nightstand, knocked them off somehow in the night, and Nickie discovered his expensive new toys first thing this morning.

Breakfast – diced bacon and scrambled eggs fed to Jack with a long-handled Sunday spoon because he has decided the size of that utensil is easier for him to eat from – ended in two bites after a coughing fit.

Worried about the damage to my back done by pushing his wheelchair, Jack attempted to feet-push himself from the living room to the bathroom. The chair got stuck in the door leading into the hall. I was trapped in his bedroom and couldn’t get to the back of the chair without crawling over Jack and, of course, a large, exceedingly helpful dog. It took a while, but Jack got himself unstuck enough for me to squeeze behind him so I could maneuver the chair. The only damage a few more chunks of wood and paint missing from the door jam.

The usual pills were spilled, falls were narrowly avoided while getting him dressed, and he was still bitching about missing the cannabis festival on Saturday.

Ten minutes ago the day care shuttle picked him up in their fancy shuttle with the wheelchair lift. What I’d really like to do right now is go back to bed. But, here I sit, fingers flying, doing my best to make sense of my world.

Last night I dreamed I was sitting on a bench beside a man. I do not know who this man was. Someone with whom I felt safe, familiar. Light dappled the ground, though I did not see trees. In the dream there was no sexual tension, only an understanding between myself and this man that we shared this one precious moment.

I woke to a grief so strong it stole my breath, blocked my throat, and released my tears.

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Hollering

My Pictures0066

A few days ago I started to write this ‘H’ post about hope. My intent was to incorporate healing into the mix. Look, it’s not like I don’t know that people can only take so much raw truth and pain on any subject. I’ve dealt with Jack’s combat PTSD for well over twenty-five years now. At some point, friends, readers, fans, acquaintances, the neighbor, the checker at the supermarket, everyone just wants me to shut the fuck up and get on with my life.

I actually see them mentally putting their hands over their ears and hollering, “Okay. Okay. I get it. Your life sucks. Now can we move on?”

So, today’s post is about hollering and hope and healing and help and humor.

Accepting help is difficult for me. Which is odd because so many people have, over the years, been there for me at just the right moment to offer a hand or a shoulder or a kind word.

A week or so ago, Jack moved from a walker to a wheelchair. The frequency of his falls increased to the point that he was perpetually banged up, bruised, and battered. Four falls in a week was his limit and he quietly borrowed a wheelchair from a friend as the custom wheels the VA ordered him have not yet arrived. The second fall in that week of falls, looked like the least destructive of all, and yet it turned out to be the one that put him in a wheelchair.

It was almost comical, that fall. Like Arte Johnson tipping over on that Laugh-In tricycle. We were in a Tibetan Rug shop with friends visiting from out-of-town. Jack was chatting with the salesperson, regaling her with stories of our trip to Nepal, talking about our own small forays into the lower end of the Himalayas. He turned to leave after this nice conversation, tipped sideways, corrected for a moment and then lost his balance and fell face-first so that his shoulders landed on two thick piles of Tibetan carpets. It looked like the gentlest, most fortuitous fall ever. It looked like a prat fall, a joke, like he did it on purpose just to show how it’s done.

That fall onto thick carpets turned out to be anything but amusing. Jack weighs about 315 pounds. The carpets on which he landed were stacked about two feet high, enough room between so that his body fell between the rugs supported by his shoulders which landed on the carpets. That fall reinjured both rotator cuffs. The injury to his shoulders made it painful for him to balance by leaning on the walker. He fell two nights later and, unable to break his fall with his hands because of the shoulder pain, landed hard on one hip. The hip wasn’t broken but it would no longer support his wieght.

And, that is how he ended up a borrowed wheelchair waiting on his new candy apple red custom wheels from the VA.

Anytime Jack’s level of care rises, my stress rides that roller coaster right on up to the tippy-top. I fuss and cry and holler and cuss. Which vents some emotional steam, but also generates additional stress. Unable to lift the wheelchair into and out of the car and now unable to transport Jack anywhere without the wheelchair, this time, in addition to hollering, I was forced to ask for help. My level of stress was so high that even I realized I must take additional time for myself.

On Tuesday, a writer friend and I drove south a few miles through the old growth redwood forest and dipped our toes in the lovely green water of the Eel River. We got as lost as two old-time Humboldt County women can get on the Avenue of the Giants, enjoyed lunch in forest, and talked about everything from caregiving, to the nuances of shadow and light, to the appeal of older men. On Thursday my middle son and I drove up the coast to Dry Lagoon. We found a few agates, poked at the elk scat, and snapped photos of sun bleached and wind scoured redwood logs as big as houses. We ate lunch in Orick with its stunning views of fog draped, forest-covered mountains, and then drove on home in time to take Jack to the free concert on the bay. Rock and Roll in a light mist. Couldn’t miss that.

My son loaded and unloaded the wheelchair, friends did their best to corral Jack who, at these events, suddenly channels hitherto unknown energy and propels himself to vendors of raffle tickets, free merchandise, and good-looking women faster than I can catch him. The following day, Friday, my oldest son and I hung out at mill yards in search of decking boards. He will begin a deck tomorrow which will look fantastic, give us much more usable outdoor space and, best of all, do away with the need for an ugly aluminum lift the VA offered to attach to our house in order to get Jack safely to and from the car.

Friday afternoon Jack wanted to attend his Parkinson group. Neither of my sons who live in the area were available to load and unload the chair and our good friends, who usual attend the group, were busy with family from out of town, and preparations for a wedding the next day. I reached out and asked if they would be at the group, knowing they almost certainly would not be attending. The husband offered to attend so as to get Jack’s wheelchair in and out of the car. I’d like it noted that I both asked for and gratefully accepted this help from generous friends.

Saturday morning, a good friend dropped by to gift me with several herbal remedies for stress. Perhaps my wild-eyed hollering and the tic in my left eye were her hints that I needed help, though it is also possible that I actually gave a verbal hint or two. Like, I’m pretty sure I actually said, “I’m losing my freaking mind.” Either way, the image of her choosing these items and bringing them to me was healing in of itself, even before the soothing effects of the lozenges and essential oils.

Saturday afternoon, Jack wanted to attend a local doggie event called Wolfstock. Hundreds of dogs. My personal favorite was a white poodle in a pink tutu and rhinestone tiara. Our 125 pound pup bobbed for hotdogs and had his picture taken with Jack. He also sniffed every single dog in attendance, allowed endless children and adults to pet him, and generally had a wonderful time. However, this event took place on an acre or two of patchy grass. Not wheelchair friendly terrain. My middle son came with us and pushed Jack’s chair. A friend came along to handle Nick, who at ten months still tends to strain on the leash on occasion which can tweak my back in seconds. So, thanks to these two men I got to stroll casually through the people and dogs, answer the question, “What kind of dog is that?” a few dozen times, and just generally enjoy myself.

During this same period two dear friends reached out to me, one called and the other sent one of those emails that I printed out and tacked to wall near my computer. Both contacts let hope into my darkness, helped me see that I will live another day, that life does, indeed, go on.

So, with the help of my sons and of all these friends, this week I healed the raw edges of my soul a bit. It’s not just raising children that takes a village. This morning I hollered a bit when the rack in the dishwasher slid off its tracks, just weeks after a $250 repair bill. I cussed over a limited and unsuccessful attempt to put the batteries in Jack’s hearing aids. But I also laughed at myself when Jack, tremors and all, managed to fix both of those problems without a single cuss word and without raising his voice. Though it should be noted that, with his progressive supranuclear palsy, raising his voice is extremely difficult for him, so, you know, he sort of cheated.

I’ll continue this blog. For now, you can remove your hands from over your ears.

Posted in aging, caregiver, grief, health, Humboldt County, humor, marriage, Uncategorized | Leave a comment

Grief. And Guilt.

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G is for grief. And it’s also for guilt.

If I had been a better wife, if I had loved Jack more selflessly, more deeply, might I have prevented his brain from developing Progressive Supranuclear Palsy? Is it possible that, if I had only been a better person myself, I could have, somehow, in some way, spared him the attack upon his brain and body and psyche by this Godawful disease?

Yes, I know this is crazy.

But while we’re exploring this fantasy, here’s another, more relevant question.

Might I, even now, if I could only get through an entire day without irritation and frustration, if I could manage even an hour of pure, selfless love, might I turn this around for him? Somehow stop the progression of this PSP which is stealing him from me one God Damn step at a time?

Yesterday, I was asked when I would be willing to entrust Jack’s care to professionals? What would have to happen before I could make the decision to put him in skilled nursing? How far am I willing to ruin my own health?  How much will I give up of myself before I decide that he needs more care than I can provide.

My only answer was, “We’re not there yet.”

This morning I looked again at the five stages of grief.

Denial

Anger

Bargaining

Depression

Acceptance

‘Stages’ is a misnomer. ‘Stages’ implies a smooth transition from one mental stair-step to another. Like all caregivers, I go through the list a half-dozen times a day. Though admittedly, I may currently be confusing acceptance with exhaustion.

But looking at the list it occurred to me that I may be stuck at bargaining. And that may be why I am not ready to discuss the possibility of Jack eventually needing more care than I can provide. Some deep, purely emotional, part of me believes I can still save him. If only I can find the right kind of love within my own flawed self, I can somehow heal his brain, call him back to me, spare him all of this.

Of course I know this is ridiculous. We’re not living in a fairy tale. No magic lion is going to softly exhale his healing breath over Jack. No amount of sacrifice or love on my part is going to fix what is happening to his brain.

I know that, right?

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Forgetting

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Forgetting our past is terrifying. Our experiences, our memories are who we are, how we identify ourselves. Part of the progressive supranuclear palsy from which Jack suffers is dementia. But, not the loss of memory associated with Alzheimer’s disease. No, this central brain disorder messes with the executive functions of the brain. Planning and problem solving is affected. There are some memory lapses, yes, but a larger issue is increasing problems with speech. Financial judgement becomes impaired.

If you’ve read My Life with a Wounded Warrior that last one should have made you either laugh out loud, or scratch your head and ask, “How will they tell the difference?”

In fact, many of these executive function issues can also be present with Post-traumatic Stress. So, yeah, how DO we tell the difference?

And that right there is the rub.

What I want to talk to you about in this post is not Jack’s loss of memories, but my own inability to accurately remember his and my shared past. The increasing tendency for the reality of sick Jack to overshadow in my mind the younger healthier Jack.

And it IS tricky.

This is the man who, long before he has PSP, hooked two 150 pound dogs to leashes and immigrated to the country of Panama. He’s filed bankruptcy twice, run off a whole string of good women, and has a dozen stories of bar fights which end with his go-to move of popping out his opponents eyeball.

Executive function? Problem solving? Are you shitting me?

When his day care calls and tells me he has been inappropriate with a female caregiver, and explains they are aware of his disorder and his current inability to judge sexual appropriateness, do I laugh and tell them that, no, he’s ALWAYS been inappropriate with women, or do I smile and thank them for their understanding. When he asks if we can have a barbecue at the house and then prints up flyers and invites seventy people, is that simply more of the same bad judgement he’s shown for the entire twenty-five years I’ve been with him, or is this a new symptom of his PSP? When I tell them I am exhausted and need the weekend to recuperate and he gets on his phone and invites people over for dinner – “Pam will make homemade pizza, you’ll love it”  – is this the same old Jack or is this new behavior?

In the old days when he did something like this, I’d glare at him and say, “Great. What are you going to be cooking for everyone, because I told you I needed to rest.” Now days if I tried this he’d likely get on the phone and all hell would break loose. I’d have a backhoe in my yard digging a pit to put a pig in the ground, carpenters arriving to build a shade pavilion, and a hundred neighbors RSVPing. Come to think of it, that’s, more or less, what happened in the past, too.

In truth, of course, what’s happening is that Jack’s symptoms of post-traumatic stress are being exacerbated by and joined with the symptoms of progressive supranuclear palsy. And this marriage of symptoms is somehow making it difficult for me to remember the good times Jack and I have had over the years.

Let me give you an example.

We lived for about five years on the beach in a little trailer park on the Mexican Caribbean, about twenty miles south of Playa Del Carman. It was a wonderful lifestyle filled with incredible scuba diving and many good memories. But, during that time Jack chased a lot of women. My reaction to his philandering was a great deal of hurt. I felt disrespected and betrayed. Lately I have to work hard to remember the good times he and I had in that little community. Each time he puts his needs over mine – like inviting people to the house when I’ve told him I am exhausted and want to rest – that disrespect triggers memories of all the other times in our relationship that I felt disrespected, my needs ignored in pursuit of his desires.

I have, in fact, put up with some crap from Jack over the years. I did it because I loved him, yes, but also because in counterbalance to the crap, he was intelligent, funny, charismatic, and adventuresome. Now days the qualities which used to offset the chronic disrespect, inappropriateness and yes, downright selfishness, has been erased by the PSP. And, just as bad, the progressive destruction of the executive function of his central brain triggers in me twenty-five years of memories of his bad judgement due to PTSD.

And yet, despite all of this, Jack is still my hero. He is still the most courageous person I know. My love for him is, deeper, more accepting, more precious than it has ever been. I cannot explain to you how that is possible.

It may well be that I am the stupidest woman on the face of the earth. Certainly there are moments when I feel that I am just that. Jack used to say that love is nothing more than a locking match of neurosis between two people. Maybe he’s right. A few months ago I asked him, if things were reversed, if I were the one with PSP and he were the caregiver, where would we be? He thought about that long enough that I thought he wasn’t going to answer. Then he told me, “Well. I’d be in Thailand living with a couple of beautiful young women and you’d be in the best nursing home I could afford.”

I didn’t know how to respond to that. Still don’t.

Except that caring for Jack through this PSP is somehow a completion of our adventure. It is about my love for him, yes, but it is also about the person I choose to be.

There may come a time when I can no longer keep him home, when he needs care 24/7 and a nursing home is our best option. But until that time, before I get out of bed each morning, and the last thing each night I call up a good memory he and I have shared. The scuba dive on which we watched the mating dance of two trigger fish and then Jack imitated the amorous male fish underwater, shaking his shoulders, sliding past me, removing his mouthpiece, and nipping me gently on the shoulder. The times one of my sons was in trouble and, without hesitation Jack loaded the car and we drove hundreds, in one case thousands of miles, to help them out. The times he bought toys or ice cream or boxes of food for children we met on our travels.

I call up the good times. I do my best to safeguard the memories of this twenty-five year adventure. I don’t know what else to do.

Posted in aging, grief, health, nursing home, Pamela Foster, Parkinson Disease, Progressive Supranuclear Palsy, pts, Uncategorized | Leave a comment