The Zeolot

chimps fighting

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

fireworks

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

PIC00070

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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Vortex

hawaii

You may remember the incident at the pool with the young, female physical therapist who reported Jack to her supervisor for making inappropriate sexual remarks. Despite my calm reasoning, loud explaining, and inevitable begging, Jack did indeed make the situation worse.

He is no longer allowed at the pool – the only pool within three hundred miles where he could receive the physical therapy he needs in order to remain strong and mobile enough to remain in our home, rather than having to go into a skilled nursing facility.

Pretty tough consequences for the self-destructive old warrior.

Before you conclude he was treated unfairly, you should know that he was given every chance to continue with therapy and just be more careful about his language. Instead he confronted the young woman he calls his accuser. I do not know exactly what was said, but immediately after this conversation, the supervisor banned him from returning to the pool.

Jack’s still ranting.

“I’ll take it all the way to the supreme court. She’s the ugliest therapist there. Damn girl damaged my reputation as a dirty old man.”

And, no, he cannot see that these very comments indict him.

He called the VA so that this incident is now in his permanent record. It goes without saying that, while both were polite, neither his VA doctor nor his social worker were particularly sympathetic with his cause.

Apparently, he learned nothing from this experience.

But, here’s what I learned.

Over the past few months I have often felt caught in a vortex of Jack’s physical needs, his emotional struggles, and the small, but constant dramas he creates in an attempt to exert control over his life. Unable to sort things out, think clearly, regain my balance, I have been unable to extradite myself from this whirling mass of need.

Somehow this whole drama with the physical therapist allowed me to find a way out of the reactive riptide I have been caught in. I do not know if my new-found resting place – a metaphorical soft, sandy shore – will last. I suspect I will be swept up in the current again from time to time. But, I have discovered a trick. Swimming parallel to a rip current instead of fighting against the flow allows a swimmer to escape the pull of the sea. In much the same way distancing myself emotionally from Jack allows me to make it to shore and plant my feet firmly in the warm sand.

It seems counter intuitive, but withdrawing empathy from my husband, deliberately shutting off my feelings for him, actually makes me better, very much better as it turns out, at caring for him. From the safety of emotional numbness I can secure a rope and see clearly enough to toss the line within his reach. If he refuses to grasp the line, if he chooses to cuss the situation and flounder instead, well, as painful as it is to watch him drown, there’s not much I can do about that.

That all sounds reasonable, right?  But I’m not that damn logical, nor am I that emotionally stable. Part of me still defines love as drowning right along with him. It’s difficult to shed the lesson of Romeo and Juliet, or more appropriately in my redneck world, Running Bear and Little White Dove. It feels decidedly odd not to sacrifice myself in the name of love. Jack has been the center of my world for almost thirty years. To now stand back and dispassionately watch him struggle is peculiar. It feels wrong. Very wrong.

But, it’s been a while since I was the equivalent of an idealistic thirteen-year-old Juliet or even an impressionistic Little White Dove. My job right now is to care for Jack. I cannot do that job any longer if I maintain a strong emotional bond with him. At this point, love and empathy tie me to a drowning man. My job is to stay on shore, guide him to sanctuary for as long as I am able, provide shelter when he will accept it. This is the hardest job I’ve ever had. I hope I can do it.

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Underwater Dreams

hawkbill

In the dream I’m floating in the ocean. Warm, salty water occasionally breaks over my face, does little more than cool my head from the hot sun. The sea is confused, waves coming from all directions, the way the Mexican Caribbean behaves just before a storm blows in all the way from the coast of African. I’m alert, aware that the shoreline is too far away for me to reach by swimming. At the far back of my  mind lurks the possibility of a shark arriving to nibble my toes or, you know, bite me in half.

I am not frightened, just aware that I need to pay attention to my surroundings, the way I did for years when I surfaced after a dive and the boat was nowhere to be seen. I have logged well over a thousand dives, on many of which I did indeed end up separated from the other divers and surfacing alone. I am experienced at waiting patiently in a potentially dangerous situation that will almost certainly turn out to be perfectly fine. The ocean won’t kill me, sharks are fascinating and scary as hell, but they rarely kill a diver. What kills is panic.

As is common in dreams, my mood changes in a split second. Clouds cover the sun, the water is instantly colder, the waves bigger, more threatening.

And I am not alone.

Two children float just out of reach, one no more than a toddler, the other perhaps kindergarten age. They splash and scream in full panic. Kicking and floundering on the surface can bring predators, and the instant this thought enters my head, a large gray fin breaks the surface. I am between the shark and the children. Surely this predator can hear my heart pounding like it will leap from my chest. I stop fluttering my feet, still my arms, do my best to float motionless.

bull shark

The children continue to splash and scream and fight to stay afloat. If I do nothing those babies, who are suddenly MY babies, my precious babies, will be torn apart by this living cruise missile aimed directly at us. If I distract the shark, I will be torn to bits and then almost certainly this apex predator will feast on the tender flesh of my babies for dessert.

I awake with a stifled scream, hot breath and doggie kisses wet my face.

It takes no introspection whatsoever to decipher that the children floating in that ocean are Jack and that the name of that apex predator aimed directly at their exposed bodies bears the name of Jack’s illness — Progressive Supranuclear Palsy.

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Time Does Not heal All Wounds

soldier

Jack is in Vietnam anniversary dates. He landed near China beach on July 4th of ’65. His best buddy, Lemual, was hit on August 31st. The medivac chopper was shot down as it tried to take off. Jack believed Lem had been killed. From that moment until Jack himself stepped on a landmine on December 14th, Jack, until very recently, had no memory of what happened. Since his PSP has mucked with his central brain, Jack is recovering patches of memories from that lost period in his life.

This is not a blessing.

This week been especially difficult. I do not know if we are dealing with post-traumatic stress exacerbated by these anniversary dates, or if this is more deterioration of Jack’s cognitive function. I strongly suspect there is no way to separate the two.

On Wednesday the supervisor at the pool where Jack goes for physical therapy called me. I should tell you that at this point my number is on every form. Jack blocks people apparently on accident. He turns off his ringer and forgets to turn it back on for days at a time. He got himself in a little trouble with some gold-diggers who mistakenly thought he still had access to cash. So, while the supervisor may have preferred to talk directly to Jack, the number he had on the form was mine and it was me he called.

We had a house full of company when my phone rang. I stepped into my room when I realized the nature of the call. Any conversation that begins with, “We all enjoy Jack. We want him to continue coming to the pool for his therapy,” is headed for a but that’s going to need privacy.

Jack’s young female physical therapist reported him to her boss for making inappropriate sexual comments. I did not dispute this claim. This was not my first time to field this type of call. Jack and I have had endless and quite pointless conversations about what constitutes inappropriate behavior around women. He cannot be dissuaded from his belief that all women love to be reminded that they’re sexually attractive. I have tried to use humor to educate him. Told him, if the first thing you ask yourself when you meet a woman is ‘Is she doable?’, well, buddy, you might be a misogynist. I have explained over and over that professional women – in-home workers, nurses, doctors, lawyers, social workers, waitresses, anyone getting paid to care for you or provide you  with a service – not only do not want your approval of their sexuality, it is against the law to offer it.

He remains unconvinced.

So, yes, I believed the accusation the young woman brought against him.

This was not, however, a big deal. Not, as I said, my first rodeo with Jack’s inappropriate behavior. I took Jack aside, told him quietly about the phone call and that he would need to be more careful from now. We went on with our get-together.

The next morning I stumbled from bed to find Jack up and sitting in his lift chair. He muted the TV. This is never a good sign. He was angry that he had no rights. Why hadn’t I backed him up when the supervisor called? Once a Vietnam vet messes up once, then forever afterward he’s guilty, was that it?

In my defense, I hadn’t even had my first cup of caffeine yet.

“I don’t know what you’re being a Vietnam Vet has to do with this.” I admit I flashed onto the scene on the cliff in The Big Lebowski. I may have chuckled a little. A bad move on my part I know, but seriously? Vietnam? “And you have not been sexually inappropriate one time. We’ve been together thirty years, you’ve hit on every one of my friends, my sister, every female employee we’ve ever had. . .”

“I tell them to let me know if I’m being inappropriate! It’s up to them to tell me to stop.”

This comment may have triggered a few issues of my own. “No. No, it is not up to the woman to control your behavior.”

“I have PTSD and PSP. A symptom of both of these diseases is inappropriate behavior and talk. Why did the supervisor call you and not me? And why didn’t you back me up? You just threw me under the bus.”

“You know what? On second thought, I’m going to need two or three cups of tea before having this conversation.”

I sipped my Earl Gray.

Jack has been doing so well lately with this old problem. He’s been at daycare over a year and not one complaint from a worker. I actually thought he was getting the idea that he had to behave around health care workers or his quality of life was going to deteriorate quickly. Every single place that offers care has a zero tolerance for sexual inappropriateness. I understand that Jack does not understand, truly he does not, that his comments are offensive, but I really thought he was getting with the program.

It may, or may not, be relevant to know that my mom was in town for a one day visit and I had been looking forward to getting out and enjoying a quiet visit with her while Jack was with the respite worker. I wondered if some of this was Jack’s attempt to draw my attention back to him and away from my mom.

By the time I was caffeine-fortified, the worker, Alonso, was at the house. Jack had an appointment for therapy at the pool and the worker usually helps him into his bathing suit and gathers his towel and a change of clothes. However, when Jack came down the hall he was wearing long pants, a button shirt and his black cap that says, Dysfunctional Vietnam Vet, Leave Me Alone.

“I thought you were going to the pool?”

“Don’t you worry about it. If you can’t back me up, I’ll deal with this myself. Alonso can take me to talk to the supervisor. I’ll sue the bastards. Own the whole goddamn pool before I’m done. Take it all the way to the supreme court.”

The worker’s eyes widened. This was a bit outside his job description.

“Jack.” I touched his arm, tried to make eye contact. “Honey? Right now, this is no big deal. A minor blip that is over and done. If you cause yourself to be banned from the pool, the only person who’s going to suffer is you. Maybe you could talk to some of your guys about this before you talk to the supervisor?”

“You don’t need to worry about it. Alonso’s got my back.”

And they were out the door, though not before I told Alonso to just take him to the pool and stay out of it. I had no control over him at that point, though I did actually think about tying him to his chair. Certainly this was far above Alonso’s pay grade.

I met my mom and sons and grandson for breakfast and did my best to enjoy the visit I’d been looking forward to for weeks. No point in wasting a good moment on something over which I had no control. As the waitress took our order, a text came in from Alonso saying that Jack was in with the supervisor and having a meltdown, but that the supervisor was handling things well. As I chatted with my mom about her latest watercolor project, a text beeped telling me that Jack had fallen in front of the municipal auditorium, but that he was okay.

The auditorium is a good five miles from the pool.

Turns out Jack told Alonso to take him to his buddy’s house, got lost and ended up ten blocks from the friend’s house. He fell as he was getting out of the car. They did, eventually, find the right house. However, the visit with his friend did nothing to calm him down. They left there and went to see an attorney so Jack could file a discrimination charge against the pool. Seriously? Because, what? The pool discriminated against dirty old men?

By that afternoon, my mom had left and Jack was still as angry as I’ve ever seen him. Still ranting about respect and discrimination against Vietnam vets. He needed other combat vets. I’ve seen him like this before. Other combat vets are the only people who can help him. No matter how much I love and care for him, that is a role I cannot fill. I loaded him up and took him to the local VetCenter. They put him in a quiet room, and sent other veterans in to talk with him until a counselor could see him.

He was calmer when I picked him up, but still determined to see that attorney, still angry that I did not believe that he was not inappropriate with the therapist. We have agreed that, from now on, when someone calls about his behavior the first thing I will ask them is, have you talked to Jack about this? However, and I cannot fix this for him. At this point, I am his caregiver. His speech can be difficult to understand, especially over the phone. He tends to not be the most logical thinker on the face of the planet. I understand that reporting him to me rather than confronting him directly about his behavior is infantilizing. I get that. But we are deep in the water here with social workers and professional health care folks. There are laws and rules in place to protect both the client and the worker. People are going to follow established protocol.

He is still insisting on speaking with an attorney.  I will not help him in this endeavor in any way. To do so would, in my mind, encourage faulty and dangerous thinking. I empathize with his need for control over some small aspects of his life and I will do everything I can to help him with  that, but I have very little sympathy for his belief that he can say whatever he wants to women and it’s up to them to tell him when he’s out of line. I do understand that when Jack was growing up men actually could say pretty much anything they wanted to a service worker. All through high school I worked as a waitress. Believe me, I understand.

There are thousands upon thousands of these old misogynists in the healthcare system. Men who now find themselves dependent on the very women they have preyed upon for years. These men either learn new rules or they end up without the care they need, or drugged into submission. I do not want that for Jack. And, yet, I cannot control his behavior.

So, we are at an impasse. To be honest, while the week has been exhausting, I have too much on my plate to worry too much about it. I am deeply hurt by Jack’s accusation that I do not back him up. But I will get over it. His hour-by-hour care will overshadow my anger. To paraphrase: “Fuck it, Dude. Let’s get on with life.”

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