Small Expectations

NotchPeakSunset

I’ve grown to dislike those Facebook Memories that pop up first thing every morning. The old photo posts of Jack and I out dancing, or on a road trip, or hiking in one exotic location or another.  Each memory forces me to see the glaring evidence of Jack’s decline, provides irrefutable proof that my expectations sink lower each day. And the bar MUST be lowered constantly.  Jack’s physical and mental abilities deteriorate, mostly slowly, occasionally like a giant leap from a cliff, freefalling down to some shaky precipice below where we blink our eyes, teeter precariously and hope to catch our breath before the next leap.

The frustration, and anger, and cognitive dissonance of not lowering expectations is unfair to Jack, who courageously and stubbornly fights to hold on to some modicum of control over his life every single hour of every day. Besides, expecting what he can no longer give  makes me bat-shit crazy. The last few days have been especially difficult.

This week was bookended with falls.

From Wednesday to Friday last week Jack grew more and more weak, less and less able to focus, both mentally and visually. The doctors are adjusting his meds, running tests to check for a UTI. We do not know if this is yet another leap into thin air. Is this lower, narrower cliff our new normal? Friday his day care called to say he was weepy, weak, unable to feed himself, stumbling with his walker. Friday night he fell hard, and injured his hip and shoulder.

Saturday we spent at the ER. Catscan, ex-rays, urinalysis, blood tests revealed nothing more serious than a possible UTI. We came home with antibiotics. Jack called a buddy and borrowed a wheelchair as the fancy custom chair the VA has ordered for him has not yet arrived. And, just like that, our freefall landed us in a new normal where, because of the combination of general weakness and the injury to his hip, Jack can no longer safely use his walker. He cannot push his wheelchair with his hands because of the new weakness and because of injuries to his shoulders caused by past falls and exacerbated by the most recent fall. These shoulder problems, coupled with his tremors, and his failing eyesight now make him unable to feed himself as well.

This requires a whole new level of care from me and strips Jack of even more independence.

In his younger days Jack thought having two or three wives was just what he needed. Younger wives, of course. And if they didn’t speak English, even better. No backtalk like his current helpmate. Unfortunately he was never able to convince me to pursue this lifestyle. Now days, I sort of wish I’d been more open to the idea. This man needs a harem of women to care for him. Younger muscles, upper body strength, and strong backs would be appreciated around here.

Because I had severe scoliosis as a child, followed by full-spinal fusion and a couple of years in a body cast, my own back is weak. Bending is not my strong suit and pushing a wheelchair with a large man in it destroys my back, even when that large man is a husband I love dearly. Without help, it currently takes Jack over ten minutes to get from his lift chair, into the wheelchair, and then to the bathroom.

This is a problem. Last night he fell trying to do just this. The EMTs came, got him on his feet, met the dog, and left us safe but rattled. And, at least on my part, scared. How far can I push that chair each day before my own back goes out and I’m flat in bed with no one to care for either of us? How long can I get up in the night with him when he has to get out of bed to go to the bathroom before loss of sleep turns me into a permanent lunatic? How can I get him, well, anywhere? Doctor’s appointments, physical therapy, just, outside the house? I can’t transport the wheelchair and even if the VA gets us a lift, I cannot lift or fold and transport the thing without doing damage to my own back.

Too late, I’m reconsidering those younger wives. Maybe strong peasant stock who could simply lift Jack in their arms and set him gently in the passenger seat of the car?

Ah, but it’s too late for do-overs.

I must simply readjust to our new reality, knowing there is no chance of climbing back up life’s cliff to higher ground. The occupational therapist comes to the house on Monday. She may have suggestions on how to maneuver around our new cliff face.

In the meantime, I am grateful to be home where redwoods meet the Pacific Ocean and where my two older sons offer their help and time and love. Small things make me happy. A warm cup of tea on a cool morning, the embarrassment on the face of our giant galoot of a dog when he accidentally sits in the small outdoor pond, and the touch of Jack’s hand when I bring him his pills – these simple things bring momentary relief from our situation.

While I lose sight of it on an hourly basis, it is nonetheless true that lower expectations bring not lesser joy, but a deeper acceptance of the core goodness of life. I cling to this thought. In an earlier essay I quoted Germaine Greer. Here’s another truth from the great feminist:

“The older woman’s love is not love of herself, nor of herself mirrored in a lover’s eyes, nor is it corrupted by need. It is a feeling of tenderness so still and deep and warm that it gilds every grass blade and blesses every fly. It includes the ones who have a claim to it, and a great deal besides. I wouldn’t miss it for the world.”

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Death

pam pulling hair 002

I love this picture. It shows the real me.

D is for death. Not Jack’s death. Ultimately, that will be his with which to deal.

I want to talk today about my own death, and the 70% chance that I will die before Jack. That’s the statistic. 70% of caregivers die before the person for whom they are caring. In truth, I very nearly did die three years ago.

Three years ago, before we had a diagnoses, before Progressive Nuclear Palsy robbed Jack of most of his sight, stole his balance and strength, diminished his cognition, and left him with very little control over his own life. Back then, in what Jack and I refer to as the good old days, in the early months of the disease, Jack came to the point when he could no longer drive. That changed both our lives.

A social individual, a man who loves to be the center of attention, and must interact with people, Jack had a full schedule. He attended a couple of veteran’s groups, got together two or three times a week with friends, insisted on going out to the car dealers to see if that key they sent him in the mail unlocked a new BMW, was absolutely obligated to harass the VA – keep those bastards in line. People to see, things to do.

All of this worked to my advantage when Jack could drive.

“Go,” I’d say. “Have fun. Say hello to Jim, or Marty, or Tom for me.” And I’d keep the dog with me and write.

Even in those days I could not leave Jack alone for more than a few hours without arranging for a man (he was increasingly inappropriate with women) to come over and spend time with him. He got anxious. He fell. He got on the phone and created one mess or another. (Once he signed up and paid for lessons to learn to fly) He invited people, dozens of people over for a barbeque. We thought it was his PTSD. We thought age was intensifying his symptoms. We were wrong, of course. What we were living were the early stages of the Progressive Supranuclear Palsy, but we had no way of knowing that at the time. And, in truth, I believe the PSP did exacerbate Jack’s post-traumatic stress.

At that time I was writing six hours a day, traveling to speak at conferences and to market my books, enjoying the hell out of a fantastically talented group of writers and friends. I also had daily heartburn. Heartburn bad enough that, if I didn’t get to my ever-present tub of Tums, which I kept in my purse at all times, I had intense pain and then I’d be running to vomit.

No big deal. I mean, especially compared to everything Jack was going through. I had it under control. Popped a couple of extra-strength antacids a few times a day, and got on with my life. Except more and more, ‘I don’t feel well’ became my standard line when Jack wanted to go back into town for the second or third time in a day. Eventually I did make the time to call my doctor.

Took six weeks to get in. I remember I told the receptionist I could not sit up in the waiting room and asked for a place to lie down while I waited for the doctor. I was exhausted and all I’d done that day was make a couple of trips into town so Jack could go to a veteran’s group and then in the afternoon back into town to pick up a pair of his shoes which weren’t ready when we’d swung by to check on them after the group. The doctor thought I might be coming down with a bad flu that was going around. He sent me home with instructions to drink lots of water. I don’t think I mentioned my heartburn to him.

That night, curled up in bed while Jack watched TV in the next room, I sat up to take a couple of Tums and when the smell of the chalky tablets hit my nose, I got so weak I flopped back onto the bed. A clear internal command came to me then.

“Call an ambulance now, or die.”

I called the ambulance.

Jack came through the room to use the bathroom about then.

“Lock the dog in the back room,” I said. “An ambulance is on the way here.”

He blinked. Stared at me. “Am I sick?” he asked.

When the EMTs got me to the ER, my calcium level was at nineteen. Nineteen out of a possible twenty. The doc said he’s never seen anyone with a level that high, not even when he did his med school autopsy on the guy who died of calcium poisoning. My kidneys shut down. I hallucinated for a few days, not sure how long exactly. I have deliberately shut those visions out of my mind in the three years since my near-death. I was in the hospital for two weeks. One of the many, many tests they did showed that I have a hiatal hernia. Hence the heartburn.

I nearly killed myself on those fun, fruit-flavored antacids that doctors once told me would make my bones strong. If Jack had complained about feeling ill for one tenth as long as I had felt sick, I’d have stormed the VA to get him medical attention, demanded they find out what was wrong. Instead I just kept going, taking care of Jack, getting on with life, assuming I was invincible. I couldn’t be sick. Jack was the one who needed care and attention. I was the healthy one. I was the caregiver.

Now, three years later, I’ve recovered from my calcium overdose. How embarrassing to nearly die because I ODed on Tums! But I still, and increasingly, struggle to take care of myself while Jack’s need for care increases each month. Caregivers Syndrome the doctors call it. How do I make time for my own appointments and lab tests? Jack has a team of eight wonderful professional medical personnel who care for him. He has a crew of pros at the day care he attends three days a week. Every one of them makes my life easier, but I must coordinate with them, everyone must be apprised of the near-constant changes in Jack’s condition. I am ashamed to admit that I have a stack of medical bills about three inches high for which the VA is responsible but has yet to pay. It takes so incredibly much energy and time to deal, and deal, and deal with forcing Veterans Choice to pay for services for which the VA referred Jack. It’s exhausting.

When I have a free hour the last thing I want to do is see yet another damn doctor in order to take care of myself. I do my best. I make time for my own support group. I enjoy short hikes with friends, take the dog to the beach, hang out with my sons. And, yes, I get myself to the doctor on occasion, though as I write this it occurs to me that I never did go back and have that routine fasting lab test my primary care doctor ordered a few months ago.

I remind myself daily that I do not want to be a part of that 70% of caregivers who die before the loved one for whom they care. But, too often self-care just feels like one more thing I have to do before I can relax. So, I commit to doing one thing a day for myself. Even if I don’t want to follow through, even if that one thing is nothing more than a cup of tea or an afternoon nap, or yes, a 7 a.m. run to the lab to get that damn blood draw over with.

Posted in aging, calcium, caregiver, grief, health, heartburn, Parkinson Disease, Progressive Supranuclear Palsy, pts, Uncategorized, veterans, writer | 1 Comment

Commitment

fishtail

Years ago Jack and I spent a month in Nepal. We were exhausted and elated by Kathmandu, our week at Chitwan National Park, and a persistent tour guide who took us to his family home in the actual middle of jungle where we were treated to warm milk complete with water buffalo hairs floating on top. So, when we arrived in Pokhara on the shoulder of the beautiful Fishtail peak of the Himalayas, we were ready for a long rest. We stayed at the Stupa Hotel, owned by the King of Brunei and managed by a charming young Nepalese man who took us to a Tibetan refugee camp where we bought most of the rugs which, right this moment, our respite worker is taking up and storing because area rugs and Jack’s new wheelchair are a potentially dangerous combination.

In those days Jack was charming, gregarious, and truly charismatic. Everyone loved him. Including the manager of the Stupa, who put us in a room with a view. And what a view. The Fishtail framed perfectly by our French shingled window. The window had other, closer views as well. Directly below our room an open field was home to a motley herd of brown and white goats, and just to the left was a tiny, dirt-floored hut, in which lived a stooped, always shawled Nepali grandmother who cooked over an open fire, and waved up at us each time she caught our eye.

We traveled with one change of clothes and usually just washed everything in the sink and hung it to dry overnight. But, since we were at The Stupa for a week, and Jack had this ongoing relationship with the manager, Gautam, Jack arranged for our clothes to be ‘professionally’ laundered.

So, there was the afternoon we returned to our room from a stroll along the lake, Jack looked out the window and called to me, “Hey, Pam, come look at this. The goat next door is wearing your Victoria Secret Panties on his horns.”

Turns out professional laundry service in Pokhara meant beating the material on lake rocks and draping clothes over bushes and fences to dry in the thin air.

Each morning tea was delivered to our door when dawn was still no more than a slight silvering of light. As I luxuriated in its warmth, I watched our neighbor emerge from her hut of scavenged materials – mostly old wood, cardboard and a few ragged lengths of sheet metal. Bent with obvious osteoporosis, the old woman, shuffled outside before dawn each day. She knelt at a small pile of wood she had arranged the night before, and worked to light the tiny pieces of paper trash she’d collected. Then this patient old woman, blew carefully on the flames until the ragged kindling caught. She sprinkled an herb of some kind over the tiny fire.  Smoke rose directly in front of the sacred Fishtail peak. The old woman pressed her palms together in prayer, and knelt so that her forehead touched the ground. She stayed in this position until the offering had dissipated in the cold mountain air.

Here’s why I am telling you this story in a blog series about care giving.

Jack and I stayed in that lovely room with its view of the Fishtail for eight days. On only one day of our visit was The Fishtail visible just before dawn when I sipped my hot tea and the old woman made her offering.

For me, this is a lesson in faith. Beyond faith, it is a lesson in commitment. A choice to believe, to carry-on, even when the original object of our love and faith is obscured by cold, dense clouds, whipped by fog, and covered in darkness.

The narrow runners with mountain symbols which, until a few moments ago graced our hall, were woven by the old woman in the hut who taught me one of the greatest lessons of my life. We bought them from her on our last morning in our room with the view.

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Bitter

“Woman’s virtue is man’s greatest invention.” Germaine Greer

9e696_OldPeopleHoldingHands1

Four years ago – when Jack began falling, when I first noticed the tremor in his left hand, when his vision began to deteriorate faster than the VA could order him new glasses, and his personality began to travel paths I’d never seen him trod – that long four years ago when I began to realize our golden years were going to be a bit different than we’d planned, I comforted myself with the belief that this adventure too, while not of our choosing, would lead Jack and I to new heights.

I thought I’d become a better person in caring for him.

In truth, each day I become less wise and patient and kind, and more exhausted and bitter and angry. The fairy tale of two old people, hand-in-hand, shuffling through the obstacles and trials of a bad diagnoses, is just that – a fantasy – a lie perpetuated, I have to believe, by people who benefit by convincing what is, let’s face it, mostly women to give up their last healthy years to care for an ailing husband.

We caregivers, and these days I am far more caregiver than wife, are never supposed to admit this bitterness, of course.  And we rarely do. Even to each other. We tamp down our anger when our husbands blame us for, well, for every frustration in a life that is filled with limitations, disappointments, and cold, nasty truths. We paste a smile on our faces and force a cheery tone and respond to each request for water (not too much ice and don’t forget the bendy straw), and food(I don’t like pasta, can’t eat salad, chicken tastes like chemicals), and help with dressing (I want to wear the zip up pants and the button shirt), and bathing (where’s my prescription shampoo? Did you forget to order it?), and eating (The spoon’s too big, can you find me a half-teaspoon?), and that one last call to a doctor who is sick to death of hearing from us – caregivers do all this when we just want to lie our heads down and die.

So, I am not going to come out of this last adventure with Jack as a saint. Oh, hell, no. But the great lesson of my life can be applied here and it does bring comfort. The truth really does set us free. So, I will not pretend to be a kind and gentle caregiver in these posts. Though, I try to be just that each and every day. Here on these pages, I will not feign patience when what I’m really doing is repressing anger so white hot that it’s, I fear literally, eating through my backbone. I will not tell you that I have grown as a person or have learned not to take Jack’s words personally, but to understand with empathy that it is the disease talking and not him.

But I will tell you that I strive toward all of those goals.

And, that’s the best I can do.

Posted in aging, caregiver, grief, health, marriage, Pamela Foster, Progressive Supranuclear Palsy, Uncategorized | 2 Comments

Advice

sunlight

Since Jack was diagnosed with Progressive Supranuclear Palsy, an un-treatable, progressive, and ultimately, fatal disease, everyone has advice on how to cure him. Well, everyone but every single medical personnel. The advice of the neurologist was to get his affairs in order, to make those end-of-life decisions we all avoid, and to get his wishes on paper and properly notarized. But, friends, acquaintances, loved ones, compassionate strangers – these folks seek hope for him and pass this advice on to us.

Think positive thoughts, they say. Envision healing. My uncle cured his cancer with CBD oil. Marijuana cookies cured my buddy of parkinsons. Here’s a video of a guy who rode a stationary bike for an hour a day and cured his traumatic brain injury. All you need to do is walk, be sure to take seven breathes per minute as you stride. A six month course in a hyperbaric chamber will rebuild brain tissue and make you feel thirty-years-old again. Here’s the number for a dentist in Santa Rosa who will reshape your jaw in order to realign your energy. Please call this miracle-working massage therapist in Redding who will reform your brain using crystals and ancient chants. Our church has a strong prayer circle, let us lay hands on you.

I understand the reason for all this advice. People care about Jack and they want to offer hope. Hope is essential. Of course it is. But I’m never sure if the hope is offered for Jack, or for them. God knows, Jack and I understand how difficult it is to embrace a difficult truth, to stare the reality of this diagnoses in the face and beg for a gentle end. This is not Jack’s first brush with Death. The old Marine has been shadowed by The Reaper, caught an occasional glimpse of that familiar dark outline in his peripheral vision, since Vietnam.

As Jack’s caregiver, and as his wife – his protector – I follow two hard rules in deciding which remedies to try and which to turn down. Does the procedure do harm? Can we afford it? And cost is more than money. Time, and energy, and lost hope are expenses we simple do not have the means to pay right now.

So when a friend offered to come to the house and do Reiki on both Jack and me, I accepted. I have experience with the healing power of touch, believe in the interconnection of body and mind and spirit. Besides a gift freely given in love carries a value all its own.

So my friend came to the house and, as the evangelicals say, laid hands on us. When she left, Jack and I compared our experiences. Jack felt that everywhere she touched him felt better, but now everywhere she hadn’t touched him hurt worse. His solution, predictably, was that my friend, a beautiful woman, needed to put her hands all over him.

My experience was a bit more complex.

In caring for Jack, finding even a few moments a day for ME, is difficult. My mind leaps and jumps and starts down dead-end paths to meet his needs, anticipate demands, lower his stress as much as possible. Each week, sometimes it feels like each day, brings a lowering of his abilities and thus, requires that I do more to meet his needs without doing anything for him that he can do for himself. This past week has been especially difficult, with an ER visit which resolved nothing, a bad fall which injured his hip and re-damaged his right shoulder, and today, the arrival of his new, custom wheelchair, the need for which carries a psychic weight all its own.

So my Reiki treatment,  twenty minutes of letting go, accepting the loving gift of touch from a friend, felt like renewal, felt as though every well-meaning friend spoke through her hands. For just a few moments I was emptied of fear, and exhaustion, and yes, bitterness, and open to hope and strength and acceptance.

I’m not sure if there is a moral to this essay, a nugget of truth for you to carry away, except that advice, even advice given in love, is not always what is needed by a person struggling with a difficult moment in life. It does no good to veil a hard truth with false hope.

Life can be excruciatingly hard.

It can also be exquisitely precious.

If someone you know has received a difficult diagnoses, offer love, offer your time and energy and acceptance. If, like me and like Jack, you are dealing each day with a hard truth, accept the love and touch and good intentions of friends and family and strangers.

In the end it’s all we really have in this world.

Posted in aging, Pamela Foster, Progressive Supranuclear Palsy, Uncategorized | Tagged , , | 4 Comments

Catch 22

soldier

A lot of people think the Veteran’s Administration is an unwieldy bureaucracy set up to help veterans. In my experience this is true of most of the individuals who work at the VA. But the organization itself is set up to do as little as possible for veterans while creating the illusion of a deep concern for those who fight our unending wars. Without this slide-of-hand, along with the flag waving and parades, far fewer young men and women would join the military.

There is a battle raging right this moment between disabled Vietnam Veterans and the VA over a proposal to strip these old warriors of a huge chunk of their benefits. If you don’t know about this, please click here. What I want to talk about today, though, is a very personal dilemma the VA bureaucracy has provided for me.

If you’ve read My Life with a Wounded Warrior, you know being married to my Jack is both a joy and a challenge. You know that Jack stepped on a landmine just outside Danang in ’65, died, and that a corpsman yanked his eighteen-year-old body back from that glorious light into the same stinking jungle he had just escaped. You know he’s been pissed off ever since.

In 1992, over twenty-five years after that day in the Marble Mountains of Vietnam, and after ten years of appeals and persistence, the VA awarded Jack a 100% disability based on his physical wounds as well as on his raging post-traumatic stress. I’ve lived with this man for almost three decades and I assure you the psychological trauma of that war was far more debilitating than his physical wounds.  Jack was happy to receive the 100% rating, but he contested the fact that he was not rated at 100% for PTSD and that the VA had factored in something called unemployability in order to bring him up to that 100% figure. If you don’t understand how VA ratings are calculated, that is because you are sane.

It goes something like this, and I’ll do my best to make it simple and quick.

Jack was awarded 70% disability for the damage done to his body when he stepped on that landmine. Because Jack changed jobs, wives, or locations every few years. Because he could not get along with authority. Because he had raging nightmares, slept with a .357 under his pillow, was incapable of forming any intimate relationship, and was, generally, self-destructive, the VA decided Jack was 50% disabled from PTSD. A normal person might think the VA would simply add the 70% and the 50% together to get 120%.  But no

The 70% for physical wounds + 50% of the remaining 30% = 85%.

Confused yet?

But the VA are such good guys that if a veteran’s total disability is over 70%, and if he meets a long list of other criteria I’m not going to go into here (see above stated problem with authority figures and add the inability to stand because of the 66 pieces of shrapnel still embedded) the VA threw in something they call unemployability and out of the kindness of their black heart, awarded Jack that first 100% rating in ’92.

I know this is confusing, but I’m begging you to stay with me just a little longer.

Jack contested this rating. Not because he wanted more money. 100% is a 100%. But because he felt he deserved 100% for post-traumatic stress, with his physical wounds thrown in as, essentially, bonus points. Seven years later the VA agreed with him. However, because we had moved twice in this time and missed one of the many appeal deadlines by two weeks, they began his new rating in the month they finally approved it. November of 2010. 100% for PTSD, 70% for the landmine damage, and by then they threw in diabetes and parkinsons and dementia and came up with some ridiculous figure like 240%. Same amount of monthly award.

Just recently, with Jack’s new diagnoses of Progressive Supranuclear Palsy, we have needed a lot more help from the VA medical system and Jack qualifies for at least some of that help BECAUSE he has a 100% rating for ONE disability. PTSD. So, it turned out to be an important decision when Jack fought them all those years to get the rating he has now.

However.

While the system relies on wives giving up their own jobs and caring for their husbands, the VA requires a veteran be 100% disabled for ten years before his wife is eligible for any pension at the time of his death. That pension is a little less than one third what the veteran is receiving. That’s a blow to the budget, but one day shy of that ten year mark and the wife gets nothing. And when the VA made Jack’s latest ruling in 2010, they reset the clock. So, unless Jack lives until 2020, at the time of his death, I will be attempting to live on my social security of $242 a month. And, given the disease Jack is dealing with, it is unlikely he will live long enough for that reset VA clock to tick down the required ten years. We hope he lives that long and longer, of course. I work every day to provide the care and social and mental stimulation which will keep him with me until he’s in his eighties or nineties. But the reality of the progressive illness from which he suffers does not make for a strong possibility that will happen.

The Veteran’s representatives here tell me to wait, do nothing, hope we beat the odds and Jack lives another three or more years. They tell me if he dies before November of 2020, then I can write my congressman, fight for that pension just like I’ve fought for Jack’s care all these years. It IS possible that, at the time of his death, the VA will look at the fact that they have rated Jack at 100% disabled for almost twenty-five years now. It IS possible they will overrule that date on the computer and be reasonable.

But no one can verify that for me and thus, the possibility gives me no comfort.

I am an educated person. I could work, even at sixty-six, I could find a job. And, to take care of myself, that is what I should do and I should do it immediately in order to build up some savings and have an income in place at the time of Jack’s death. Except Jack can no longer be left alone for any length of time at all and, even though he has a worker twice a week and goes to day care three days a week, neither of those reliefs give me anywhere near eight hours to work on those days.

Besides, as those of you who are faithful readers of this blog  have already gleaned, even with all this help, I am at my wits end to provide the care Jack needs. I don’t think I can work AND continue to care for him. I fear that my working would mean Jack would have to go into a care facility, and that is not a possibility I am willing to consider. Not yet, not when I can still care for him in his own home.

So, why have I shared all this with you? In part because I am not the only wife of a  veteran who is dealing with this. In part because being a member of a caring community helps me to deal with these difficult decisions. And this may be the most important reason, because when someone, anyone, suggests war as a solution to whatever current situation pops up in the news, I want you to remember that the cost of war does not end when warriors straggle home from a battlefield. It does not end for the veteran and it does not end for all those of us who love them.

Posted in aging, health, Parkinson Disease, Progressive Supranuclear Palsy, pts, Uncategorized, war, VA, wounded warriors, Vietnam, medical care for veterans | Tagged | Leave a comment

Post-Memorial Day Musings

Vietnam boogie stretcher lem to chopper

This past weekend was Memorial Day, a time set aside to honor our war dead with parades and fluttering flags upon their graves, and hopefully, with solemn remembrance of who they were and what might have been.

Jack fell on Saturday night, a fall that badly bruised his back and shoulder and arm and required the help of EMTs to get him on his feet. This happens frequently but always leaves me a bit stunned, knowing the next fall might well be life changing. I spent the weekend thinking of the long term effects of war that our combat vets live with every day, every night, every minute.

This week, two men were killed up the coast in Oregon when they stepped in to protect teenage girls from an Aryan Brotherhood bully. Though I suppose that term is redundant. Nazis, racists, bigots – these folks are, by definition, bullies. The men who stepped up, protected the girls, and were thus killed, were both veterans. That, somehow, gave me hope that the good learned in combat might just balance the trauma, or okay not balance, but set the scales bouncing a bit on their axis.

Because you see, after twenty-five years of living with the effects of Jack’s war trauma, he and I are now living with a diagnoses of a fairly rare central brain disorder and I cannot help but wonder if his exposure to Agent Orange, and the horrors of war, watered for fifty years with the chemical effects on the brain of physical injury and post-traumatic stress – if all of this has not brought us to where we are.  And, somehow, I find myself with a desperate and irrational need to justify, to convince myself that the strength gained from living through his war somehow offsets the damage done.

This need is, of course, a means of embracing my own expenditure – twenty-five years of my life with a man whose strength and courage is a daily inspiration and whose needs and wounds require more patience and understanding than I possess on a near-daily basis.

At this stage, I receive a great deal of help from the VA with Jack’s care and, honestly, that is the only reason he is able to live in our home and not in a skilled nursing facility. There are caregivers –  and I am now far more caregiver than wife, and that is a deep and abiding sadness – who deal with needs as great or greater than Jack’s and who do so with little or no help. As a combat wounded veteran Jack qualifies for help, medical care for which I advocate and cajole and then, occasionally, demand. Still, I am grateful for the care he receives, know it literally saves both his life and mine.

I suppose my point here, this week after Memorial Day, is that not everyone who dies from combat, dies on the battlefield. People are changed, sometimes beyond recognition, by the horrors, the absolute inability to justify what happens in war with any possible civilian moral compass. War destroys lives. It’s not that damn difficult a concept. Despite what the flag wavers and politicians tell you, there’s no glory on a battlefield.

There’s honor, and courage, and persistence, but there is no glory.

Posted in aging, caregiver, heroes, Progressive Supranuclear Palsy, Uncategorized | 2 Comments