The dying of the light

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I began grieving for Jack almost ten years ago, when the first tell-tell signs of his disease first showed themselves. We lived then on the edge of the jungle, a twenty minute walk to the beach and a five minute stroll to the river where, in the dry season, I waded into waters which did in fact occasionally house crocodiles.  This was in the country of Panama. If you’ve read Clueless Gringos in Paradise, you know how we got there.

Relocation therapy is what the counselors call it.

Jack always said, “Every five years I change jobs, locations, or wives. Often all three.”

I’ve been with Jack for almost thirty years now.

“I messed up,” he’d tell people, “went out on permanent disability from my job, and this wife just moves with me when I relocate. I can’t get rid of her.”

He was kidding. Partly kidding.

Where was I going with this? I’m not quite myself right now, am at that stage where I have a check list before I leave the house. Keys? Purse? Dog inside and safe? Hair combed? Shoes on my feet? Yesterday morning I carefully swallowed my Tuesday morning pills, made my tea, let the dog out. After which, I slowly and with great pride in how I was remembering to take care of myself, took my Tuesday evening pills as well. When talking to friends I realize, usually just as I’m finishing the story, that just two minutes ago I told them the exact same thing.

I remember where I was going with the Panama story.

Because Jack’s Progressive Supranuclear Palsy has, as he himself says, “eaten away at him one piece at a time,” my grieving process has been long and slow. In Panama, when Jack suddenly lost his sense of direction and when his PTSD rages became more and more frequent, I was convinced we needed to get back to the states and VA medical care as quickly as possible. During our five years in Arkansas I often pulled the car over and cried, grieved for the husband who was disappearing before my eyes. Those were the years when Jack fell more and more, became increasingly irrational and jealous, demanded more and more attention from me as he became less and less able to get out and do things on his own. Arkansas is where, after a series of accidents, he stopped driving, gave up his license.

We’ve been back in my hometown of Eureka, in northern California, for about two and a half years. During this time, he has gone from walking unaided, to using a walker, to a wheelchair. At first he was somewhat mobile in the chair, able to get himself from room to room. Then he was not. The VA got him an attendee operated power chair. I, of course, was the attendee. He could not move one inch in that chair without my help.

He developed double-vision. Then his sight began to slip away. His tremors, at first controlled by dopamine that can be so effective in Parkinsons, came back. With a vengeance. He had more and more trouble feeding himself. We went to finger food, then smoothies. Now he is being fed a spoonful at a time by helpers who never pay enough attention to make him happy, who feed too fast or too slow, or can’t understand that that particular grunt means applesauce and not minced turkey. His speech is slurred to the point where communication is difficult at best. It takes two people, two strong-backed people, to move him from bed to chair.

As he lost more and more control, more and more physical and mental ability, I grieved. There came a point, about six months ago, when his day-to-day care was simply so exhausting, when he became so demanding and unable to understand that I could only do so much, when his  talk of moving to Asia and his inability to accept the reality of his situation – of our situation – simply overwhelmed me. He fell into me. Accused me daily of cheating on him. Yelled at me because I had it so much better than he had it. Then, at the end of days when it seemed I could do nothing right for him, every night, when I put him to bed, he said, “Thank you for everything you did for me today. I love you.”

And this was the worst moment of my day. I came to hate those rout words.

“Don’t you dare say you love me,” I wanted to shout at him. “Love isn’t words. Love is fucking action. It’s not demanding something every single time my butt hits my recliner. It’s not accusing me of cheating on you every single damn time I’m out of your sight. It’s not throwing your plate across the table because the bacon is too crisp.”

Every night I said, “I love you, too. See you when I see you.”

Every day ended in anger.

In about an hour, I am meeting the hospital discharge social worker. We will walk into Jack’s hospital room and tell him that a VA ambulance is picking him up at 1:00 today to transport him first to the neurology ward of the San Francisco VA hospital, and then to the Long Term Care facility next door. San Francisco is almost three hundred miles from me.  He’s been in our local hospital for fifteen days.

It turns out that anger, exhaustion, and a tight daily schedule do a pretty good job of burying grief. I’m learning that when that combination is taken away, that same grief, long buried, blooms full-blown into the soul.

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Garden of Zen

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Sanity is a relative term.

As a caregiver, getting out of the house is difficult and often impossible, so one of the things I do to preserve what’s left of my mental stability is to correspond with friends. People, by the way, often say they wish they could do more to support Jack and I as we deal with this Parkinsonian nightmare. Their texts and emails are actually the best thing they can do.

Their short notes are windows which allow fresh air to blow away the stagnation that is care giving. Their words bring a brief, but essential taste of life outside the prison of Progressive Supernuclear Palsy. Their concern is a reminder that life does indeed go on, that somewhere the sun is shining, or the wind is howling, or rain is falling gently on mountainsides. Reading their notes, I remember that people are dealing with their own challenges, and finding their own moments of joy. One such friend is my old dive buddy Hugh who, with his lovely wife, lives in British Columbia. While our scuba diving days are over, we have remained good friends in no small part because of the many incredible moments we shared in the Mexican Caribbean.

I do my best to include in my return emails to Hugh some non-Jack related news. I do a poor job meeting this goal.  Most of my missives are nothing more than a litany of whining complaints. Last week, in an attempt to include one simple paragraph that did not mention Jack or the VA, I told Hugh about my plans to work in the garden. I do not remember the exact sentence, but I used the term Zen gardening. My buddy responded by gently pointing out that it might be an exercise in futility to attempt to maintain a Zen garden in the presence of my 140 pound dog whose feet are as large as dinner plates.  Certainly I did not need to set myself up for more futility in my life.

His comment made me laugh. Something, by the way, which I crave. A friend doesn’t need to read or respond to my rants. I’m only venting, blowing the bad juju out of my system. But, make me laugh and I will love you forever. His comment also made me realize that I had not properly explained what I meant by Zen gardening.

As often happens with communication between friends, thinking about my response forced me to clarify my own thoughts, and I stumbled upon a somewhat disturbing truth.

My idea of Zen isn’t that different from what western psychiatry calls disassociation.

Let me, in my usual rambling manner, explain.

My yard is small. I rarely trim anything. I’m serious. I viciously attack the wild morning glory that threatens to consume the entire yard, have been known to shout, “Get off of her!” as I rip the clinging tendrils from ferns and lilies. But, everything else, I let grow where it chooses. Espaliered trees and shrubs make my stomach actually ache just to look at them. I like my garden blousy and overgrown and just a little wild.

So, how on earth does this image fit the concept of Zen gardening?

Those of you who follow this blog know I have a bad back. Scoliosis as a child, full-spinal fusion, chronic back pain now that I’m old enough for arthritis to set into the two discs of my back that actually bend. My gardening abilities, therefore, have been severely curtailed. No more hauling wheelbarrows of dirt, or lifting pots. Even digging a hole big enough to plant a small tree takes me several days of effort, and a few extra doses of Aleve.

This physical challenge has led to what I call Zen gardening. Even with my handy three-legged stool, and with almost everything in the yard in pots and horse troughs and anything else I can find that raises the plants off the ground, I can only work for short periods of time. I have learned to ignore the weeds and overgrown lawn and focus on the tiny portion of the yard on which I am currently working. I deliberately fall into the experience of the pale green unfurling fronds of my Australian fern in its cobalt pot. I block out the dandelions in the background and the pony-sized hole the dog has dug under the camellia bush behind the shiny blue pot.

I narrow my focus, one might even say disassociate, from the reality outside what I choose to experience. These momentary respites are what I call Zen gardening.

It occurs to me that I do this all day long. Not just in the garden.

For instance, it takes about seven minutes for Jack to get up from his lift chair, shuffle sideways two steps, turn and lower himself into the wheelchair. I no longer brace him in any way when he does this. He has fallen into me enough times that I have finally learned my lesson. During these transfers, I deliberately step back out of the fall zone. I stand, or sit, and wait for him to get where he’s going, or for him to fall at which time I call the fire men to come and get him up.

These transfers happen dozens of times a day. To and from the toilet. To and from the table.  To and from bed. I use these brief period of time to remove myself from reality. I don’t know how else to explain it. I re-experience clouds gathering over the ocean from a walk earlier in the week. I see again early morning rain on a fat succulent in a wrought iron pot. I remember a Caribbean dive when a pair of spotted eagle rays swept past and when I reached out and entreated them to return, to my joy they turned in a wide fluid curve and flew through the turquoise water directly to me to play and frolic.

In those moments, I am no longer in an overheated house watching my husband work his way inch-by-careful-inch from one chair to another. I have escaped the prison of Parkinsons.

I do not know if this ability to mentally step outside reality is a blessing or a curse. Is it Zen or is it insanity? I do not know. But I believe it is a necessity for me right now. To paraphrase John Lennon, I will continue to pursue whatever gets me through the night.

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Delusions

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The thing about delusions is that, to the person experiencing them, they are reality. We have a couple of real delusional gems going on at our house right now.

Extreme jealousy and paranoia and anger are all insidious in Jack’s disease – this godawful Progressive Supernuclear Palsy. In his world, I have a whole other life, one which, it must be admitted, is far more exciting and satisfying than my day-to-day care of him. No amount of reasoning, offering of proof, or even staying within his sight will ever convince him that I am not cheating on him. This is especially aggravating to me as, in our thirty year marriage, I have never, not once, been sexually unfaithful, while Jack has pursued a fairly large number of other women, and actually had sex with a half-dozen or so.

So, yes, it pisses me off that he’s telling the neighbors, his buddies and caregivers at daycare, the guys in his veteran’s group, the respite workers, his doctors, and our friends that I am running around on him. It shocked, and then infuriated me when he threatened to have me killed for engaging in all this imagined extramarital fun and games.  Hell, the whole damn thing makes me actually think about going ahead and having me some of that hot sex he’s envisioning I’m having.

As my Mom says, “May as well be hung for a sheep as a lamb.”

I’m kidding.

Really. A joke. Just a joke.

Jack’s world also includes plans for him to get on a plane, fly to Vietnam, find people to care for him and set himself up with twenty-four hour care by several young women. Since transferring from his wheelchair to the car, or toilet, or bed, or recliner is a slow and quite terrifying procedure, his speech is difficult for even English speakers to understand, he is now legally blind, has lost his sense of direction, and never did have any common sense – for all these reasons plus the fact that he now has the best medical care to be had free of charge, this is not a viable plan. I understand why he wants it to be possible. Hell, if it were possible, I’d take him to Asia myself.

The VA is currently trying to find a skilled nursing facility which will accept him. I simply cannot care for him in the home any longer.  His application has been rejected by, so far, three facilities. He needs more care than they can provide, is a fall risk, and the VA pays just about half what a private- pay patient is charged for the same room and services. I suspect that last part is a damn high priority for most of these places, but what do I know? And, in case you’re wondering, yes there are long-term care facilities attached to some VA hospitals. The waiting list on the one in San Francisco is typical of these places. It is dozens of names long and hasn’t moved since the last flu epidemic.

So. He will end up far from home, cared for by strangers. No wonder he thinks he’s going back to Vietnam to be ministered to by the descendants of the villagers whose huts he zippoed.

Jack is now on anti-delusion medication and an antidepressant that is especially effective on PTSD. Both of these are helping. They’re helping me – they keep him less agitated and volatile. Nothing will stop or even lessen the delusions. And they are going to get worse. Stronger.  Odder. More dangerous.

Already I have had to take away his unsupervised access to the internet. He did, after all, threaten to have me killed. Not to kill me himself. Given his physical condition that would not have been a credible threat. But he actually thought about it long enough to figure that out and to think, “Hey. I know. I’ll hire someone to do the job.”

I was having nightmares about him finding some disreputable individual who, for the right amount of money, would actually tell him they’d take him to Vietnam and get him all set up. Hell, with access to his bank account, they might throw in a murder just for shits and grins.

So, no more computer and no more access to anything but pocket change.

And for me, this whole experience is beginning to feel less like a decision to place a beloved husband in a nursing home and more like a freaking divorce. People who have never been through this advise me to remember the good times Jack and I have had, don’t take his words and actions personally, remind myself it’s just the disease talking. That’s nonsense. The last thing I can do right now is to cherish my deep and abiding love for my husband.

The couple who traveled all over Asia with nothing but a change of clothes on our backs, lived in Mexico and Panama, moved at the drop a hat and always, always loved each other? That couple is gone. Dead. Someday, once Jack is in skilled nursing and I have time to recuperate, I hope to remember that couple fondly. For now, there is only Jack’s day-to-day care and my commitment to fulfilling my duty as his wife, to finding him the best care possible.

I know that sounds harsh. It is harsh.

It’s also the only way I’m going to get through the next few months.

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The Zeolot

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Jack has always lived in a somewhat paranoid universe. He’s always thought himself the center of the universe. He’s always been jealous of any attention I pay to, or that is paid to me by, other men. Or women. Or children. Or dogs.

He’s okay with cats.

As his illness progresses, it should not have come as a shock to me that these attitudes have intensified. And, yet, I am having difficulty dealing with his inability to take into account the feelings or needs of anyone besides himself, coupled with his delusional belief that each and every time I leave the house, I am meeting one man or another for an acrobatic session of hot sex I have not been inclined to or, in truth capable of, for a good many years.

When Jack first received the diagnoses of Progressive Supranuclear Palsy, I read everything I could find on the illness. In my naivety, I was actually relieved when I discovered that the type of dementia associated with PSP is not like Alzheimer’s where Jack might forget how to brush his teeth or be unable to recognize me. No, Parkinsonian dementia is usually all about delusions, hallucinations, and obsessions.

I mean, other than the hallucinations, that didn’t sound too much different from Jack’s post-traumatic-stress-normal.  I’ve been dealing with those symptoms since our first date when, over spaghetti and meatballs, he calmly explained that every time I left the room he assumed I was never coming back. He claimed this was because, as a young Marine, he saw literally dozens of men go out on patrol and never return. Honestly, at the time, I thought he was exaggerating. I think I even wiped red sauce from my mouth and told him I was going to the bathroom, not out on patrol, and I’d be back momentarily.

Up until a few days ago, I actually envisioned that when we had to deal with hallucinations, I would simply stay with Jack and reassure him the vision was not real. We’d just wait this particular symptom out together.

When it comes to parkinsonian hallucinations, it turns out I was the delusional one.

On Thursday morning, I staggered from bed to find Jack sitting in the living room in his wheelchair. He was fired up. Had awoken at 3 a.m. and gone online to check our bank balance, something I have asked him not to do, even threatened to change the password to prevent. He forgot. Went online, saw a deposit for either $660, or $160, or $186 dollars, depending on his telling of the story.

“We did get a refund from those pants we ordered you. The ones that didn’t fit. Remember? You and the respite worker returned them almost a month ago.” I inhaled my first shot of caffeine, enjoyed the heavenly scent of bergamot, still oblivious to where the morning was headed.

“I don’t have any damn ink for my printer! Couldn’t print out the statement. It was $660, goddamnit. Not pants.”

I looked at Jack. Realized we might have a problem. Pulled up the joint account on my phone. “Honey? I’m looking at the account, clear back to September. There’s this $104 credit from the return of the pants. That’s all I see.”

At this point things went downhill quickly. Jack wheeled himself into his computer, put the wrong password in enough times to lock us both out of the account. I was not particularly happy about this, and I was getting a little freaked out by his anger over what seemed to me a simple mistake on his part, brought about by his poor eyesight and a bit of early morning brain fog.

He began to melt down. “I’m not crazy, goddamnit. I saw the credit for $160. Stop trying to make me think I’m crazy.”

I still did not understand what was happening. Continued to reason with him. “No one is saying you’re crazy. You just made a mistake. Looked at the numbers wrong. You know your eyesight isn’t great.”

I now know that reasoning with a person in the midst of a delusion is not recommended. It actually makes the situation worse. Which is exactly what happened.

He went quickly from anger, to howling crying, to accusations that I was lying to him and had stolen the money to finance some nefarious activity with one of my many stud boyfriends.

I stepped away, called the bank, spent an hour on the phone getting new passwords. The respite worker, Alonso, who had arrived mid-meltdown, went out and bought ink for Jack’s printer. Jack talked to the banker once we had access to the account again. The guy did his best to explain that no credit for $160, or $660, or even $186 had hit the account in the past six months.

Once the respite worker returned, I got the hell out of the house.

I told Jack I was going to the post office and yelled down the hall to Alonso that I’d be back within two hours, which is when Jack’s occupational therapist was coming to the house. I took the dog with me, drove to Fort Humboldt where I walked Nickie along the trail and remembered how to breathe. We stopped by the post office and then came on home.

I hadn’t even taken the collar off the dog when Jack yelled, “Two hours? It takes you two hours to go to the post office? Did you have a good time with your boyfriend?”

I did not react well to this question. I did take it personally. I did raise my voice.

My reaction escalated the situation to crisis mode. You do not need to read and I do not need to relive the events of the next half hour, but there was yelling, on both our parts.  What you do need to know is that none of this is typical behavior for either Jack or for me. In the entire twenty-five plus years we’ve been together, voices have been raised very rarely.

I left Jack howling in the living room. My presence, at that point, only intensified his anger and grief. I stepped outside and called his neurologist in San Francisco and told her we were now on a whole new playing field. She said to take him immediately off the Oxycontin which he has been on for the residual pain of shingles, and she prescribed a new medication for anxiety and delusions.

We got through the day. I did some research on recommendations for how to deal with delusions in PSP. Distraction. That’s the key. Not reasoned argument. Certainly not taking the accusations personally and yelling back.

So, I’m practicing, “Look! A squirrel!”

And

“I have cookies!”

I’m also doing some self-examination as to why I took the accusation of cheating so personally. And, I must concede that, in fact, I am lately drawn to certain other men. This is a bit of a shock to me. Since Jack and I have been together, I have, until now, been uninterested in any other man. But I am now far more caregiver to Jack than wife, and while for years I insisted to myself that being alone would be the height of paradise for me, lately I yearn for someone with whom to share life’s ridiculously mundane moments.

While Jack is dead wrong about me cheating on him sexually, he is right that I am emotionally intimate with other people — male and female. My response to his accusation was, in part, guilt. But in a larger sense, it was survival instinct. I will not make it as his caregiver if I do not have friends with whom I share those moments in life that he is unable to have an interest in. And, yes, one or two of these friends are men who are deeply important to me. These men have been kind, and supportive, and incredibly helpful to me, as well as to Jack, as his symptoms drag us ever deeper down the rabbit hole of PSP.

So, I made some mistakes this week, let my anger and frustration, and insecurity get away from me. But I also learned some important lessons. I’ve released my unrealistic concept of how Jack and I will deal with his dementia. I accepted my own need for emotional intimacy from both men and women. And I have a better idea of how best to handle Jack’s next delusion or hallucination. Life goes on.

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Yikes

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Well, a lot has happened since I last posted on this blog. Jack returned from San Francisco, his shingles dried up, he began a four day a week LOUD speech therapy for people with Parkinsons, his new custom wheelchair was delivered along with a nifty contraption for the shower which actually allows him to shower in a seated position, and his bed caught fire.

Ah, hah! You did not expect that last one, did you?

Yeah. Neither did we.

At 3:30 in the morning, there was a loud POP, a bright flash of light, and a whole lot more electrical smoke than anyone wants in their home. It is, evidently, a well-documented fact that fire possesses healing properties and this one certainly cured Jack, temporarily, of his infirmities. He levitated off the bed, fell into his wheelchair and got the hell out of his room. My son, Josh, who sleeps in the room next to Jack’s, rushed in, flipped the mattress off the hospital bed, unplugged the controls, and wheeled Jack to the kitchen. As they passed my door, where the dog was already up and whining loudly, Josh yelled to me, “Mom, get up, Jack’s bed caught fire.”

This announcement had the same effect on me as the fire, seconds earlier, had on Jack. I leaped from the bed. When I reached Jack’s room, there was no fire, just a great deal of stinky smoke. Josh and I laid our hands against the walls and the bed motors, checked for heat. We opened all the windows in the house. Jack has a reoccurring dream about burning, becoming as he says, ‘a crispy critter.’ He was as frightened as I’ve ever seen him, insisted I call the fire department to come and make sure there wasn’t a slow fire in the walls of his room.

I pulled my hoody over my pajamas, standard attire for Humboldt County, and went outside to wait for the truck. Two young men, in full fire-fighting gear, showed up within minutes. They waved their heat detector around, told me not to plug the bed back into the outlet, and did their best to assure Jack that there was no longer any danger of fire.

The next morning, yesterday, after a series of phone calls, the medical supply company, who the VA had contracted with for the bed, sent two young men who determined that, indeed, the bed motor had caught fire. However, they could do nothing about replacing the bed until they heard from the VA. I gently explained that they had supplied a bed to a disabled veteran and it CAUGHT FIRE. They were going to have to bring in another bed to replace the one that CAUGHT FIRE. They spoke with their supervisor and determined that they could lend Jack a bed until the VA completed all the paperwork to actually replace the one that had almost fried him.

The VA representative called to say that she was rushing the order through a back channel, but it would still be several weeks before a new bed was available. Since a lender bed was on the way, that seemed a good plan. All I cared about was that Jack had a bed in which to safely sleep. The medical supply company sent two new young men who dismantled the old bed and carried it to my garage, and assembled the loaner bed in his room. Jack was at his daily speech therapy, but these guys demonstrated for me that the bed did indeed go up and down and worked properly.

That evening, I made the new bed, and helped Jack into it. He was nervous about the electrical wiring in the controls catching fire, but he got under the sheet and settled down. Two minutes later he came rolling out of his room enraged, cussing up a storm. The head of the bed would not go up. The foot and the middle would go up and down. But the head would only go down. Since he cannot sleep without his head elevated due to his choking issue, this meant he would be sleeping in his recliner for another night.

I do not handle rage particularly well. In particular when that anger is directed at me. I walked past Jack and into his room. Pushed the control that should have brought the head of the bed up. Click. Click. Click. No movement. I eased back into the living room where Jack proceeded to tell me how angry he gets when I don’t believe him when he tells me something. Fair enough.

I felt a failure for not checking that ALL the functions on the controls worked properly before letting the medical supply guys leave. Nonetheless, there was nothing I could do about the bed at nine o’clock at night. As I mentioned, I am not fond of rage. I understood Jack’s frustration and fear and anger, but I will not be a verbal punching bag.

I got him settled for the night in his recliner and told him, “I do not like being yelled at and do not want to be around you right now. I’m going to my room.”

The dog came with me.

Jack’s final shot as we left was to yell, “I’m not yelling!”

I shut the door to my room and had myself a nice little cry. Sometimes that’s all I can do.

This morning was Jack’s first day back at Adult Day Care. Once I’d gotten him his breakfast and helped him dress, he had an hour to kill. He called an attorney to see about suing the company who made the bed. He spoke with the supervisor at the medical supply company who immediately apologized and assured him she’d send the young men back to the house this morning to fix or replace the bed. This immediate reaction from her left him with nowhere to vent his rage, but he yelled at her for a while anyway before hanging up.

He called the VA library in San Francisco to see where the hell the audio books were that they’d promised him. He called the local VA to make an appointment to see the podiatrist so he can get his new shoes. He called them back to talk to the nurse in audiology to say that he couldn’t wait until his next appointment, November 15th, for his new hearing aids (you may remember the dog ate his last pair) and that if they have a cancellation they should call me and I’d get him there within ten minutes. This is for hearing aids to replace the ones that he has had for five years and worn approximately ten times. All of those instances, by the way, he spend bitching about the background noise and swearing he’s never wear them again.

He practiced his speech therapy. Saying AAAAAAAAH for five seconds over and over again. He practiced the personalized phrases the therapist wrote out for him and ad libbed a good bit.

“How are you, you stupid SOB?”

Good morning, you dumb asshole.”

And so on and so forth.

Finally, fi-na-lly, the shuttle bus came and picked him up and drove him to daycare.

The guys should be here shortly to fix his bed. Once I finish this post, my plan is to make another cup of tea, sit quietly on my deck and do absolutely nothing until the shuttle brings Jack home at about 1:30. Yes, I believe that is a good and necessary plan.

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X-ray Vision

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My respite is nearly over. Tuesday the VA is set to transport Jack three hundred miles from San Francisco back up the coast to me here in Eureka. With his outbreak of shingles the very day he arrived at the facility, he has been in isolation for coming up on two weeks. He is more than ready to come home.

“Short enough to dangle my legs off a dime”, “two days and a wake up” is how he greeted me this morning when he called.

I, on the other hand, am not ready for him to return.

My back remains stiff and sore. Afternoons I am still twisted as though my spine were a dishrag. I walk like a dog with distemper. Scoliosis is a bitch. And, beyond the challenge of my back, I am not yet prepared emotionally to pick up his daily care.

That is exactly what I will do, of course. Ready or not, here he comes.

My goal is to limit the number of times I get up, bend down, fetch and carry. Jack will accept a somewhat restricted caregiver, or he will have to go into skilled nursing. I can do nothing about his mental state – his small delusions of persecution or his jealousy, and obsessions. But, maybe if I am not in so much pain, if I am not quite so tired, his mind-set will not infect me as much. Because it’s a double-sided challenge, I’ve come to see that. The physical demands of caring for him, coupled with the loss, the grief, of losing my husband in tiny increments work together to overwhelm.

Early on in this two week respite period a friend suggested I remind myself of the good times Jack and I have shared over the years – the scuba diving, the dancing in the moonlight, the traveling we shared. I find myself unable to do this. I don’t know if my inability to access the feelings associated with this past is due to the grief I feel over the loss the very man with whom I shared those adventures, or if Jack’s day-to-day needs, the current version of who he is, have obscured my memories. Whichever it is, and I suspect both causes, I know that past happened, but I no longer find joy in those times.

Perhaps when Jack gets home, I will once again discover the moments when the old Jack peeks through the veil of this awful disease. But for right now, I am numb, find myself following the old lessons Jack learned in the Corp and taught me years ago. Put one foot in front of the other. You don’t have to like it, you just have to do it.

Emotional deadening is, after all, an effective coping device, and sometimes the difference between success and failure is not much more than shutting down and continuing to move along the path in front of you.

I do not have access to a magic machine which would reveal a sort of x-ray into the future. My plan is to simply do my best to take care of myself and Jack and trust the universe to work out the details.

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San Francisco Weary

sad woman

Jack’s at the San Francisco VA for two weeks. My son and I drove him down on Monday and Tuesday. It’s about a six hour trip, too far for him to ride in the car and then go directly to get checked in at the Long Term Care facility and then race across the maze of VA buildings to get to his neurology appointment. So we make a two day adventure out of the trip. Stay the first night in Petaluma, about an hour from the Golden Gate, and drive in the following morning once rush hour traffic clears.

The theory behind the trip, which ends up costing us about $500, is that he gets all his medical tests and appointments with specialists done in that two week period. Some of the specialty doctors he could see here. Not neurology. There is no neurologist who will accept Veterans Choice. But the eye exam, catscans, x-rays, swallow test, and orthopedist he could see up here in Humboldt County. However, each appointment takes months to set up and then more months of phone calls for me to get the VA insurer to actually pay the bill. In the meantime, the doctor or hospital bills Jack and the account goes to collections.

Going to San Francisco is expensive and stressful, but it’s our best option.

It also, in theory, gives me a two week respite from Jack’s care.

We left Monday morning. Before he was even in the car Jack was singing.

“Please Mr. Custer, I don’t wanna go. There’s redskins out there, just waitin’ to take my hair. I don’t wanna end up dead or bald.”

When we loaded him into the car and headed south, he skipped the subtlety and changed the lyrics.

“Please Mrs. Jones. I don’t wanna go. There’s nurses down there, just waitin’ to kill me. I don’t wanna end up dead or bald.”

At first, this was both sad and amusing. Two hundred and fifty miles later, it had become irritating and not funny in the least.

Within minutes, I’m serious here, minutes, of getting him into the big handicap accessible room in Petaluma he demanded juice, popcorn, Tylenol, and another glass of juice because the first one spilled. He needed lidocaine rubbed on his side and his back and hip, couldn’t find the remote for the TV, wanted to change into his pajamas. And it went on and on from there. Of course I understood that he was angry with me for leaving him for two weeks, frightened of being away from home when he is now so vulnerable he literally cannot move even a foot in any direction without help, and his pain level was elevated due to the long car ride.

Still, even with my son to shelp the wheelchair and walker and luggage, I was weary by the time we got him to the VA the following morning. I sent my son off for a few hours of sightseeing and Jack and I went into the Long Term Care facility. The very instant my son drove away and I pushed Jack’s wheelchair through the automatic doors and into the lobby, a hot pain hit my lower back. My right leg went dead. I let go of the wheelchair and dragged myself to high back chair where I collapsed.

Sciatica. The dreaded sciatica. The same sciatica that put me down about two years ago, flat in bed and unable to even get to the bathroom without screaming in pain.

“I’m sorry but someone else is going to have to do whatever you need done now,” I told Jack.

Luckily there were plenty of nurses and aides and doctors and helpers to get Jack in and settled in his room. I pawed around in my purse for my traveling bottle of Aleve, inched my way to the drinking fountain and swallowed the anti-inflammatories. By the time I made it up to Jack’s room, he was settled in bed with four nurses hovering, visiting, and hanging up his clothes. I sat in the recliner in his room and refused to get up again until it was time for us to go to his appointment with a six doctor team in neurology. The team took good care of Jack. Listened well, asked all the right questions, were respectful and as helpful as they could be given that he has a progressive and incurable brain disorder. They adjusted a couple of his meds, did a thorough exam which even they admitted was more for them to learn about this fairly rare disorder than to offer any help to Jack.

We had a long list of questions. One of these had to do with service connecting his PSP.

Jack has been rated 100% service connected disabled by the VA since 1991. The rule is that a veteran has to be rated 100% for ten years before his widow receives a dime from the VA at the time of his death. However, Jack’s original rating combined his physical disability (remember he stepped on a landmine) with his psychological dysfunction (PTSD) to come up with the 100%. Jack challenged that ruling, insisting that he met the criteria for a rating of 100% based solely on his PTSD. It took until 2010, but the claim eventually worked its way through the system and the VA agreed with him. This ruling, 100% disabled for ONE disability, in this case PTSD, is why Jack is eligible for Home Based Primary Care. It’s also why we receive an additional $700 a month so I can stay home and earn those big bucks taking care of him.

However, at that time, 2010, the VA restarted the clock on his ten years at 100%. Which may, or may not, mean that at the time of his death, they will rule that I do not meet the ten year requirement and therefore I will be figuring out how to live on my tiny social security check of $185 a month. The loophole is that if he dies of a service connected disease or injury, I get the pension. So, one of our questions at this meeting with these wonderful doctors was if they could service connect his form of Parkinsons – Progressive Supranuclear Palsy. Their answer was that while Parkinsons is an automatic connection due to agent orange exposure, PSP is not on the VA’s list of service connected diseases.

So, no point worrying about what cannot be changed.

Jack was pushed back to his room with a lovely view of a crescent of the San Francisco bay and a slice of the city. I said goodbye and crippled downstairs to meet my son who drove us back to our extremely tiny and very expensive motel room by the Golden Gate. In one of the finest cities in the world, we fell into our beds, ordered pizza, and fell asleep in the third inning of the wild card game. The following morning, Wednesday, we drove three hundred miles home.

Thursday morning, the doctor at the VA facility called to tell me that Jack was no longer in his room with a view, but was now in isolation. He has shingles. All his tests are cancelled as he is not allowed to leave his room until he is no longer contagious. It is highly unlikely, though not impossible, (he does have an amazing team of doctors on his side), that he will be unable to have any testing done before he leaves in twelve days. No visiting with the other veterans, no eating in the cafeteria, no wondering the grounds and petting the cat or enjoying the enormous tropical fish tank – just stuck in a tiny room with a button to call the nurses. I spoke to the head nurse, told her Jack must have lots of attention. She promised to get volunteers in to see him, have the activities director provide him with individual activities, and to have the nurses drop in and chat with him whenever they can. Still, this is not the two week stay we had hoped for.

On the plus side, I refilled my prescription for prednisone and my back is sore but I am up and walking. Also, the lead neurologist called to tell me that one of interns in the team who met with us was so incensed that the VA would not service connect this form of Parkinsons that she spent the entire night looking up legal precedence and found four cases where the VA had ruled that PSP is, indeed, connected to exposure to agent orange. This may turn out to be well worth the stress and cost of the entire trip.

So, I am home, alone with Nickie the giant dog, no one to wait on, actual time to myself.

I had planned to work in the yard and to do some housework that just never gets done, but while I am upright and moving relatively pain free, I am not inclined to push my luck with my sciatica. I have a list of writing projects I had looked forward to diving into. I don’t have to walk or bend or lift to do those. But I find myself sad, weary of life, frightened of my ability to pick up and go on once Jack comes home. Money worries, which I simply push to the back of my mind while caring for Jack, creep into my thoughts.

Will I have a life after Jack? Might I enjoy friends, family, a little travel, maybe even a new job that brings some satisfaction? There was a week or two last month when I could foresee all that, envision myself as a somewhat merry widow. But now I’m not so sure. More and more I understand Jack’s idea of the Viking funeral where the wife throws herself on the funeral pyre and goes up in smoke with her husband and lord.

I’m kidding, of course. Mostly I’m kidding.

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