Skilled Nursing

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Years ago we lived in the high desert of Arizona. Jack planted a garden of okra and tomatoes in raised beds inside what had once been a small corral. His hard work proved a boon for the local bunny population. He tacked chicken wire to the lower fence in an attempt to keep the cottontails out. The bunnies dug under.

He then bought an air gun.

“The rascals are eating my ‘maters’. I’ll shoot the sons-a-bitches.”

He positioned himself for a clear shot of his precious tomatoes and waited for his adversaries to expose their twitching noses. The bunnies simply waited him out. Some weeks later, when all Jack’s squash and okra had filled the tummies of the bunnies, Jack looked out the window to see a rabbit munching on his last straggly tomato plant. He grabbed his air gun, eased open the kitchen window, took careful aim, and pressed the trigger.

The bunny jumped straight in the air and came down dead as the proverbial door nail.

“Oh, no. I think I killed him.”

Turned out this was the first living thing Jack had intentionally killed since returning from Vietnam. Well, that may not be true strictly speaking, but in Jack’s mind at least any previous living thing that died at his hands deserved his fate.

My reaction to Jack’s remorse over the death of Peter Rabbit’s cousin was less than supportive.

“You went to six stores to find a gun powerful enough to kill a rabbit. You bought ammo, loaded the weapon, laid in wait for your prey, and then deliberately shot the thing. No, you don’t now get to claim you’re sorry for its death. Go and dispose of the body.”

Jack dug a hole deep enough to keep the coyotes away, buried the bunny while it was still warm, and stacked penance rocks on the tiny grave. He never tried to grow anything in Arizona again.

This week I have come to realize I may have been overly harsh with Jack that day.

Several months ago, the VA social worker suggested I familiarize myself with the local skilled nursing facility that Jack would be placed in when I can no longer provide him the care he needs.

“Do it now,” she advised, “before you’re stressed out over having to make the decision.”

I figured visiting the place would either ease my mind that Jack would be well cared for when the time came, or it would inspire me to make sure, no matter what it took, that he would never go into the facility. As it turns out, the only thing I could find wrong with the facility or the care was that it’s twenty miles away.

Shortly after my original visit, Jack stopped using his walker and went to a wheelchair for part of the day. Now, a mere two months later, he is using the chair fulltime and can no longer push it with his arms because of injuries sustained to his shoulders from several bad falls, and he can no longer propel himself by pushing with his feet because his hip is giving him constant pain. He cannot use a power wheelchair because his sight and his tremors are too bad.

This is beginning to sound like the old saw, “For want of a nail the shoe was lost, for want of a shoe, the horse was lost, for want of a horse the . . .” well, you know how the story ends.

Because Jack’s brand of PSP has also affected his urinary system, he makes frequent trips to the bathroom. Since he cannot push the wheelchair, someone must help him get to the toilet, and help him quickly. At home that someone is me. During the day this is not too bad. But I am not capable of getting up with him five or six times a night and still being able to care for him during the day.

He has fallen trying to get himself in and out of bed and to the bathroom without help.

And then there is the issue of how long it’s going to take to get us the attendant-controlled power wheelchair the VA has ordered. I am thrilled the occupational therapist ordered it. Not only will it save my back, which now requires twice the maximum recommended dose of Aleve each day – to be honest on most days I supplement with Tylenol – but a power chair will let me take Jack for walks in the woods, to the store, to festivals and outings of all kinds that since he went to the wheelchair fulltime, are off limits for us.

The glitch is that this chair is still three, probably closer to four months from being in our house. Will my back last that long?

Just as importantly, because Jack knows how tired I get, how much pushing his 320 pounds in the wheelchair hurts my back, he doesn’t always call me when he needs help. He gets up, takes those two or three steps himself, or uses his walker to get from his bed to the toilet. He falls. Not every time, but once a week or so, he falls. In the past, his falls required the EMTs to get him on his feet, but he was rarely hurt badly. Now, with his shoulders and hip injured from previous tumbles, the damage from these falls is escalating.

After her last visit, his doctor mentioned she thought it might be time for him to go into skilled nursing where he will have a whole lot more people to meet his needs.

Jack and I went to the VA approved facility, I pushed his chair around, we talked to patients and workers, spoke with the head nurse. We got all our questions answered. Tried to picture ourselves in this new situation. Jack in a double room in the odd combination of hospital and home that is skilled nursing, participating in the many activities, going on outings to the fair and out for pizza, even fishing once a year or so. Me twenty miles away driving back and forth each day to see him.

My head knows it’s time to pull the trigger. I’ve seen the facility. Jack is agreeable, if reluctant, to making the move. I understand that his safety is the most important concern. That one more damn fall could do him in. I see first-hand the damage that has already been done by previous falls. We have the assurance of the nursing staff that they will come as soon as possible each and every time Jack needs help going to the toilet. That they will do everything for him that I do and do it better as there are a dozen of them.

And yet, I cannot make the decision.

Friends point out that Jack going into skilled nursing too soon is preferable to waiting too long, to putting it off until that last bad fall before making the move. I KNOW this.

But I cannot squeeze the trigger.

The counterpoint to all these goddamn facts is that he is my husband and I want him with me. I do not want him to live in a nursing home with strangers. I do not want our life together to end. I’m not ready.

I’m not ready.

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Responsibility

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Those in the paths of mighty hurricanes will often refuse to evacuate unless they can keep their beloved family pets with them. They will stay in their flooded homes, cradle their animals to their breasts, and keep moving the cans of Purina higher as the waters rise around them. Dog food which, by the way, is made from big-eyed cows and highly intelligent pigs and soft and cuddly lambs.

The difference between, say, an oversized pit bull with an adorable polka dot bow tie and the cow or pig or lamb that we, or our representatives, slaughter for dog food, is that most of us do not have a relationship with what we call farm animals.

Relationship is everything. Assuming responsibility for the nurturing of another sentient being floods us with hormones and chemicals which we interpret as love. Over time a history of shared moments further binds us with our loved one. At some point frustration over the chewed table leg, anger at a slow-to-housebreak puppy, irritation at a dog that runs away every time he’s off lead – this leads us to a choice. We either give the dog away, or we make a commitment based, not on warm fuzzy feelings, but on an adult’s understanding of responsibility.

Yes, in this long-winded analogy, Jack is the dog that destroys things I love, refuses to be housebroken, and runs amok at every opportunity. And, the intellectual maze I’m attempting to find my way through here has, at its exit, the answer to the question, “Why am I sacrificing my life in order to care for Jack?”

The simple answer is that he is my husband. I actually did take a solemn vow to love him and care for him for better or worse, in sickness and in health. At sixty-six my word means something to me.

But the cheese at the end of this maze is much more complex than that vow. If you’ll forgive me another convoluted metaphor, the reason I’m trying so hard to hold on to his care is not sliced, plastic wrapped, homogeneous American cheese, it’s more of a well-aged, and extremely complex French brie.  Why is it important for me to follow my nose to the source of my decision to keep Jack home with me?  Because, we may be coming to the end of this particular arrangement. We may have reached the point where my keeping him home and insisting on caring for him is providing Jack with less care than he needs. I may actually be doing him harm.

To leave behind the image of the maze-running rat with the twitching nose and return to my doggie-in-the-hurricane analogy, I may be at that point where rescue workers attempt to pry my drooling companion from my arms in order to take him to a safe shelter and me to sanctuary. I admit to identifying with those folks in Texas sitting on their roof tops clutching a shivering dog and waving away the rescue boats.

At some point, the responsible action will be to override every protective instinct I have, ignore the flood of nurturing hormones and chemicals, and do what’s best for Jack.

That is, after all, what I vowed to do all those years ago.

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In The Twinkling of an Eye

bridge over the river kwai

Fifteen or so years ago, Jack and I took a train from Bangkok to the bridge over the river Kwai. Yes, THAT bridge. Visiting a POW camp and graveyard takes a heavy emotional toll, and with Jack’s combat PTSD, and me monitoring Jack for his reaction at every step, the experience left us both a bit numb. Repressing emotions does that to a person. Toward the end of the day, we stood with our backs to a large glass case of random human bones and read placards that told the story of the camp and of the bridge.

These informational posts were obviously written by a person who spoke English as a second language. After a day of visiting mockups of POW camps complete with pictures of starving prisoners, after strolling breathless in the heat and humidity in a well-tended graveyard surrounded by deep green jungle, we stood with our backs to this giant pile of human bones and read the placards. One told the story of how, when the allies threatened to bomb the bridge, the Japanese soldiers marched their prisoners out onto its length. Their hope was that the allies would not kill their own men and the bridge would be saved.

The bombs fell from the bellies of the planes, the placard stated, and in the twinkling of an eye, the bridge and all the POWs were blown to bits.

The juxtaposition of the quaint and charming, nearly whimsical cliche in the twinkling of an eye with the horror which the phrase described sent Jack and I into first giggles and then hysterical laughter. We crept away from the bone pile and walked back to our hotel to recover from our day.

Jack fell again this morning. That’s twice now in four days. The first time we had to call the EMTs to get him up. Today he managed to get his legs under him and pushed himself up onto his bed, but he hit his nose, there was some bleeding, and now it looks like he may end up with two black eyes which he will, no doubt, tell everyone I gave him. But, when I heard this second fall, as I rushed down the hall and into his bedroom, the phrase that leapt into my mind was in the twinkling of an eye. Running to Jack I had the same eerie feeling as I did that day in Thailand with a haphazard stack of bleached bones looming at my back.

Life can change so quickly.

All it takes is one fall, one bad decision, one accident.

And my world will never be the same.

This knowledge is both a constant weight of dread on my soul and an impetus to seize every moment, to luxuriate in each second, to take nothing for granted.

This is the only way I know to counterbalance the fear.

And yet, it is difficult when most days I am overwhelmed with Jack’s care, beaten down by the knowledge that I am resentful, and frustrated, and oh so easily irritated with his needs. Most days I just want a moment of quiet, a dedicated time to myself to accomplish nothing more than an empty mind, a clean slate. Each fall slams me with guilt at the realization of how quickly I can lose him, at the knowledge of my impatient and frustration with his care. At the same time, the moment requires that I step back emotionally, take stock of how badly he’s hurt and what he needs from me.

I am left exhausted, and with the sure knowledge that he will fall again and again and again. Until he dies. And then I will be left with the pain not just of his loss, but with the understanding that I was impatient, even unloving to him, that my own survival required an emotional distancing that robbed me of the closeness I craved.

How quickly life can change.

In the twinkling of an eye.

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Purple People Eaters

Purple people eater

My world view is predicated primarily on logic, experience, and expedience. Yet, I know the power of emotions. I believe love can heal, can open our souls to everything good in life, and I believe that is a kind of magic. I believe hate can devour us from within. However, essentially, I am a “show me the double-blind study” kind of woman, with one or two illogical caveats. For instance, several times I’ve awakened from dreams and known one of my boys was in trouble when, indeed, that son was in crisis. I am California enough that I routinely say that a person has good, or bad, energy. So, yes, I have inconsistencies in my world view, but for the most part, I am a skeptic.

Jack, on the other hand, has always been drawn to the mystical. If you don’t believe me, read Boogie with Chesty. I wrote that story pretty much the exact way Jack told it to me.

Jack believes in ESP. On a fairly regular basis, from the corner of his eye, he spots a black figure he identifies as death. U.F.O.s and angels and demons are a part of his world. The man rarely meets a conspiracy theory he does not embrace. When we lived in Mexico he drove five hundred kilometers to see a witch doctor who he hoped would heal his pain. The old guy laid hands on Jack and told him he could not cure him, that he needed to forgive himself for past wrongs and move forward with his life. Jack was awestruck. I figured that was good advice for pretty much everyone on earth.

My point here is that one person’s Woo Woo Nutso Crazy is another’s Accepted Reality. There are indeed, more things in heaven and earth Horatio than are dreamt of in any of our philosophies. However (and you knew this however was coming, right?), there are limits to how far most of us will stretch the bounds of possibility before our ties to reality are severed.

One of the symptoms of Progressive Supranuclear Palsy can be a loss of the ability to discern imagination from reality, in some cases the patient experiences full-blown hallucinations. This is especially troublesome in Jack’s case because his reality has always been unique, a bit more open than my reality. You might remember that this is the man who was thrilled to be spearfishing when a shark had been sighted in the water, a man who thought hooking two giant mastiffs to leashes and moving with them to the country of Panama was a damn fine and reasonable idea, a man who, apparently, honestly believed that as long as he was truthful about it I’d be fine and dandy with him chasing younger women.

So, you understand my hesitation when the neurologist asks me if Jack is losing touch with reality.

Whose reality?

Lately, though, Jack has begun to make decidedly odd comments. Lately, I am concerned that he may be dangling a little too much of himself off that cliff of sanity. Lately, I fear he may, indeed, be traveling not just in a world of his own creation, but one in which the tethers to reality have been loosed.

It started with a carousel. This was a few months ago. We were watching Jeopardy, me shouting out, mostly wrong, answers, when, in a clear voice Jack shouted, “I hope a tornado picks up one of those eucalyptus trees and smashes it into the thing!”

“What?” I jumped. Even the dog was startled by Jack’s vehemence.

“I hate that damn carousel?”

“What carousel?” Had Trebeck revealed a clue about wooden horses, or clowns, or merry-go-rounds?

It took me several minutes to figure it out. His train of thought had been triggered by an advertisement for a car dealer in town which does, indeed, have a carousel on its lot. And, in fact, across the highway from this dealer and on the bayside there is a row of old eucalyptus trees.

Once I caught on to what he was saying, I asked, “Why don’t you like that carousel?”

The dog got up and gave Jack kisses on his ear, wagged his giant fan tail. Jack was not appeased.

“I hate carousels!”

“No, you don’t.” Maybe I could reason him out of his agitation. “Remember when we were in Panama and we took that family we sort of adopted to the big mall. You paid for the kids to ride on those beautiful wooden horses with the flaring nostrils? Remember? The youngest boy insisted on riding the pig with wings?”

“I did that because I wanted those kids to die.”

I laughed somewhat hysterically. “That’s not true. You adored those little kids. Bought them all kinds of school supplies and toys. You enjoyed watching them riding that carousel.”

“Did not.”

So, I let it go. But it bothered me.

A few days later, my son told me, “Hey, Mom, look, you have a turtle dove at your bird feeder.”

“Never seen one of them here.” I watched the bird strut and peck at the bird seed that had fallen to the ground. “You know, I think that’s actually a mourning dove.”

And, Josh and I were off on a five minute tangent as to whether it was morning dove or mourning dove, which, of course ended in a Google search.

A few days later, I was standing in the yard talking to my oldest son, Mica, when Jack came to the kitchen window and yelled, “Be careful! You’re going to step on the turtle.”

My son and I looked at each other.

“Turtle?” Mica looked around.

“Right there, by your mom’s feet.”

This too, took a while for me to decipher though I bet you’ve already figured it out. Earlier when Josh and I had been trying to identify the dove, all Jack heard was the word turtle and he conjured up a lovely little shelled creature.

Mica and I walked around the yard picking up this and that as Jack directed us, trying to convince him there was no turtle. I explained about the dove. He insisted, still insists, that he saw a turtle. Given his failing eyesight, and his bad hearing, it is completely understandable that Jack got confused about what was in the yard. What is disturbing, however, is that he refuses to accept the explanation I just gave you, and insists that a turtle does indeed live in our yard and that he sees it from time-to-time.

A week or so ago, he was having a good morning, woke up without pain, thought he had died. When I told him I was glad he was feeling so good, he informed me that his respite worker, Alonso, had cured him.

“What?”

“He put some kind of herb in my bed. It was all tied together and looked like a two-headed goat.”

“What?”

“And he sprinkled some other magic potion on my pillowcase.”

“Where is it? Show me?”

“It disappeared.”

“What?” You see that, as a writer, I am quite articulate in my questioning.

“When the sun came up.”

“So, the herb thingie isn’t there now?”

He looked disgusted. “No. Of course not. It’s magic.”

When Alonso came to work, I asked him, in front of Jack, if he had put any herbs or magic spells on Jack or on his bed.

“Ahhh, no. The only magic I do is prayer.”

“Well,” Jack said, “Of course he said that. If he tells me what he asked for, the wish won’t come true.”

“What? Like a birthday wish?”

Jack shook his head. “Don’t be ridiculous. Birthday wishes come true only if you hold your mouth right when you blow out the candles.”

I’m pretty sure he was kidding about that last part.

But, I can’t be sure.

Then, a couple of days ago, Jack was in a lot of pain. “I wish the aliens would stop doing their experiments on me.”

“What?”

Well, you see where this is going. Next he’s going to be telling me purple people eaters are harvesting his organs.

Posted in aging, caregiver, grief, health, marijuana, Parkinson Disease, Progressive Supranuclear Palsy, pts, Uncategorized | 4 Comments

Opioids

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This week has been a series of medical challenges.  The dog pooped blood. That’s never a good sign. Two trips to the veterinarian and an empty check book later, Nickie is on the mend. The very hour the dog’s symptoms improved, Jack began to shout and moan about pain in his left hip. You may remember that a month or so ago he fell and banged his right hip.  That injury, coupled with his shoulders, which he damaged in a previous fall, put him in a wheelchair and set in motion a slew of preparations for dealing with his new mode of transportation.

I do not know what is now causing the pain in the opposite hip. Jack has two theories. One – his physical therapist taped his shoulders which helped so much with the pain in his shoulders, that he now is aware of the excruciating pain in his hip. Or, as a backup theory – he has gout. In his hip. The VA primary care doctor thinks it’s probably an arthritis flare-up. However, because I live with the old Marine and do not want to hear his endless griping about the VA doctor’s, I asked for a blood test to check for gout. His doctor gladly complied. We will not, of course, get the results of that test for several days, every hour of which Jack is, evidently, going to ask me if I’ve called yet to find out what the test said. I have a strong and ugly suspicion that this new nightmare may be the result of the PSP itself, his central brain incorrectly processing or over-processing pain signals.

Whatever the cause, for the first time in over fifty years — since he recovered from stepping on the landmine –Jack is taking an opioid. He insists these new pills do not help the pain, yet when he takes them as prescribed his moaning is reduced. Unfortunately, other behavior increases. Jack has never had firm boundaries, never understood the concept of tact, or been big on filtering his speech. Since the onset of PSP, his speech is more blunt, more emotional, more confused. These characteristics are enhanced by the opioid. The drug also increases his confusion and, though this is difficult to believe, his obstinance.

Here’s an example, and I choose this particular example deliberately because many combat veterans harbor a deep and abiding distrust of the VA. I might even call these feelings paranoia. In addition, combat vets tend to go one of two ways with managing their own health. Either you cannot get them to go to a doctor unless they are literally unconscious and therefore unable to resist, or as in Jack’s case, they are hyper alert and obsessed with their many aches and pains.

One of Jack’s persistent gripes is that labels on medication from the VA pharmacy do not list the purpose of the pills. So, standard procedure around here is that Jack has a new symptom of one kind or another. I call the VA. A doctor, usually either his primary care doctor or his neurologist, discusses trying a new medication to see if it helps whatever problem he is having. We wait a week or two for the new medication to arrive. It gets here. Even though he has been told not to check the mail and even though he cannot operate a freaking cell phone without requiring a trip to the service center to repair his phone, he manages to check his medications on-line.  When he sees that a prescription is due in our PO Box, he asks his respite worker, or a friend, to take him to the post office where he picks up one of those plastic baggies of pills from the VA.

He opens the bag. If he does not recognize the name of the pills and if the label does not say what the pills are treating, he throws the pills in the back of his cabinet and ‘forgets’ to tell me they have arrived. A day or two later, he asks me where his new pills are to treat whatever medical problem with which he is currently struggling. I call the VA. They tell me the pills have been shipped. I paw through his cabinet and, usually, find the new pills. He doesn’t know how they got there. I put the new pills in his daily pill box, drop the bottle into the ziplock bag which holds his daily meds, and add the new medication to his meds list.

The first day he takes the new pill, he yells for me, “What is this pill?”

I explain it’s the med we’ve been waiting on for a month.

“I want to see the bottle.”

Which, as you have already guessed, does not clearly state what condition the pill has been prescribed to treat.

“I’m not taking this pill.”

We then have a few minutes of cussing the VA. Once he’s quieted, I say, “Take the pill or don’t take it. It’s up to you. The doctor thought it might help with your problem.”

“What are the side effects of this new poison? The Goddamn VA is trying to kill me.”

Every medication has at least one side effect that mimics a symptom he is already dealing with on a daily basis. This knowledge calls up another few minutes of VA bashing, followed by his go-to statement.

“Until I met you I drank a fifth of tequila a day, felt great, and never took one damn pill. You won’t let me drink and now I’m on a dozen pills day. You and the VA are in cahoots. All of you, doing your best to kill me.”

Knowing he’s venting, I usually let this last little protest slide. But not always. Sometimes I cannot keep quiet. I really cannot.

“It’s up to you whether you take the pill. But, just so you know, if I wanted to kill you, you’d have been dead a long time ago.”

Whether I keep quiet or not, the next step in this dance is that, low and behold, he develops one of the side effects or one of his existing symptoms intensifies. He wants me to call the prescribing doctor and report this phenomenon. I do not want to make this call. I put him off, distract and redirect. But the man is as stubborn as a mule. He may not remember if he ate lunch an hour ago, but he’ll not turn loose of a suspicion that the VA and I are involved in a plot to kill his ornery ass.

Eventually, I make the call, and report what he’s experiencing. The doctor, whichever doc it is, says the same thing every time, “I’d like him to keep taking the medication for a while. If the side effects get worse, give me a call back.”

By then he has a new medical problem and we begin this whole process again.

Jack’s new pain medication, the opioid, has intensified his anger, his confusion, and his paranoia. I am hopeful that, like so much else in life, this pain too shall pass, and he will not have to take the pill for very long. I’m pretty sure that when the AMA says narcotics can kill, they’re talking about the patient. Maybe, when I have a spare minute, I’ll write and recommend they expand that killing zone to include the caregiver.

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Nebulous

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Webster’s dictionary gives these synonyms for nebulous – vague, ill-defined, unclear, hazy, uncertain, indefinite, indeterminate, imprecise, unformed, muddled, confused, and ambiguous. When people ask me how I’m doing as Jack’s caregiver, instead of my usual answer of ‘okay’, or ‘not bad’, maybe my answer should be, “My state of mind is nebulous.”

When Jack’s symptoms began, the image that came to me was of living in one of those bouncy castles. Each step threw me off-balance. A lot of energy was expended on adjusting and readjusting my center and any movement within our little world tended to tip me over, leave me flat on my back struggling to right myself. In these past few years I’ve gotten used to the ground shifting beneath my feet. My metaphorical challenge now seems to be not in figuring out how to stand, but in understanding which way is up, or out, or why in the hell I don’t just lie down and give up.

The other day a dear friend told me that, in order to survive, I was going to have to put emotional distance between Jack and myself. In truth, people have been telling me this for a couple of years.

“Don’t take his behavior personally.”

“It’s the disease talking, not the man.”

It took me a long time to accept this advice and I only actually heard the recommendation when it came from someone who knows and loves both Jack and me. It’s not that I haven’t been separating from Jack emotionally for a while. That’s a difficult sentence to type, even now, but it’s true. What’s tearing me apart is the constant competing needs to both grab each possible moment of connection with my husband, and at the same exact time, to guard against the empathy which makes my job impossible.

So, yes, my state of mind is often nebulous. I’m muddled, confused, my mind hazy with these twin requirements of care giving.

Let me give you a couple of examples.

On Tuesdays and Thursdays we have a respite worker who comes in to stay with Jack so I can have a break. Except, if I am not strict, hardhearted, sometimes downright mean about it, instead of me having a day off, Jack simply has one more person to wait on him on those days. It is simply not possible for Jack to understand the idea that I might be in the house but not available to jump up and fetch, or cook, or make a phone call, or run an errand for him. So, if I stay in my own home on those days, inevitably either I get no respite or I end up being so blunt with Jack about why I am not available to help him with one thing or another that we then have a day or two of him being pissed off because, as he puts it, “Sorry it’s such a bother for you that I’m still alive.”

Trying not to take this personally leaves me muddled. Angry and frustrated, as well as sad that Jack either cannot understand my need for some relief and privacy, or does not care.

The VA is well aware that, if I burn out or am physically crippled by the demands of care giving, they will be spending a much larger amount of money for Jack’s care. Good skilled nursing is incredibly expensive and, frankly, hard to come by. They provide me with one month a year of respite care – away from home respite care. In our case this means Jack goes to the San Francisco VA for two weeks every six months. He stays at the Community Living Center, meets with all the VA specialists he needs to see, and has all the tests done that the neurologists order. I drive him the three hundred miles down the coast. We stay one night just north of the city, usually in Petaluma, drive into the city the next day, get him checked into the respite facility, and then I attend a two or sometimes three hour neurology appointment with him. He then stays at the facility and I come on home for two weeks of R&R. On his next two week stay the VA is even going to transport him (and provide an in-trip caregiver just for him) back home to me when his two weeks is over.

For me, this two week respite is a much needed break. For Jack, it is proof that I do not love him. How could anyone need respite when they have the near-royal privilege of caring for The Jack? Of course, he intellectually knows this is not true. Kind of. But it feels like abandonment to him, and if I do not harden my heart for weeks before and all during his stay, I will not get this respite. So, I cry the first hundred miles on the way home after leaving him, but I keep the car aimed north.

At the same time, if I lose the emotional connection, the intimacy between Jack and myself – the love – then I have put my life on hold for nothing more than a job. More importantly, unless we get very lucky, these are the last times Jack and I will have together. I have a huge and pressing need to make each day count, to be present for those moments when the old Jack is visible, to enter into play and laughter with the man with whom I have enjoyed almost three decades of marriage.

So, yes, today’s post is brought to you by the letter N and the word nebulous.

Posted in aging, caregiver, grief, marriage, Pamela Foster, Uncategorized | 3 Comments

Mixed Messages

chimps fighting

Yesterday was not a good day between Jack and me. We got up a little late, had a 10:00 appointment a half hour away at the Coast Guard Station to renew my dependent ID. The respite worker was late (first day of kindergarten for his daughter), I needed a shower, Jack didn’t understand that he was to get dressed while I was in the shower, well. . . you get the idea.

By the time I loaded the wheelchair onto the Jerry-rigged lift and strapped it down in what I hoped was a secure fashion, I was not exactly a picture of calm and confidence. This anxiety was heightened every time I glanced in the rear-view mirror and saw the wheelchair bouncing behind my little car as we sped along highway 101. At the coast guard station we followed the coastie inside once he’d opened the gate, and found a place to park a few dozen yards from the entrance to the building.

The lift lowered perfectly, I unfastened the straps, wheeled the chair off and Jack lowered himself into it like a pro. A person walking on two good legs would not have noticed the incline between the car and the front door. A person with a bad back pushing a wheelchair with a man who weighs about 320 pounds noticed this incline immediately. The ramp, of course, was on the far side of the steps, near an empty handicap accessible parking spot which I had been unable to see as there had been a large van blocking the entrance when we pulled in.

Jack pointed out that I should have parked in this wheelchair designated spot, a comment which, while correct, I did not find helpful. This might be a good time to reveal that getting my ID card renewed was entirely Jack’s idea. One of those things upon which he insisted and then hounded me until I arranged. Okay. In truth, he asked me to set the appointment up maybe four times, grumbled when I hadn’t done it, finally caught me at a moment when I just said, ‘to hell with it,’ and called to get my ID.

I mention this because it helps explain, (here read justify) at least some of my irritability.

It took forty-five minutes to get the ID card during which time, even though I asked him not to, Jack told everyone in the room that I was a writer, and had eight books on ‘the Amazon’ and passed out my card. He swore he did this because he was proud of me though it felt more to me like he did it solely for the purpose of irritating me.

When we left the building Jack asked one of the coast guard’s men to help us to the car. The guy did not understand what Jack was asking. Jack asked again. Same result. I could have translated the request and asked for help. However, I knew the trip back was going to be downhill, and I didn’t want some young kid watching me figure out how to strap the wheelchair on the lift and get Jack back into the car.

On the way home, the chair bouncing along behind us, Jack said, “You sure don’t like to ask for help, do you?”

At that point, my window of tolerance had closed. I would like to tell you that I said, “I can’t deal with this right now, please just let’s be quiet until we get home.”

But what I really did was to clench my teeth and mutter, “Shut up. Now.”

Back home, I got the wheelchair unloaded, Jack into the house, grabbed some paperwork, greeted the tardy respite worker, and left again. My first stop was to pick up my own blood pressure pills. This seemed a bad day to go without this medication so I waited twenty minutes for the order to be filled. During that time I returned four calls from the VA and various health care workers. Blood pressure pills in my purse, I drove to the post office because Jack swore his VA meds were in. They were not. However a year’s worth of batteries for his hearing aids were in the box. The dog, you might remember, chewed up these hearing aids earlier this week.

I decided to treat myself to lunch and enjoyed a quiet sandwich with only two phone calls to interrupt my meal. (Jack’s physical therapist changing his appointment time, and the occupational therapist asking me to come in a little early) Rested and ready for the rest of the day, I drove to the office of the Veterans Services representative to see about applying for an actual van with a lift to transport Jack now that he’s using the wheelchair.

When I walked into that office and gave my name, the clerk said, “Oh. You’re supposed to call home.”

“What?”

“Your husband called and asked that you call him when you got here.”

I pictured Jack on the floor, limbs twisted under him, hopefully not too much blood.

I called him. His phone was shut off.

I called the respite worker. He didn’t know why Jack wanted me to call.

Jack called me on the other line. “Hi honey. My worker can bring me right down so I can talk to the service rep.”

“You don’t need to come down here, Jack.”

“Oh. Okay. Just trying to be helpful. When will you be home?”

“From here I go to the VA to test drive different attendant operated wheelchairs, remember?”

“Oh. Yeah. I didn’t know that was today. Can I have some of your cookies?”

So.

The paperwork got started at the Vet Rep’s office. I test drove the wheelchairs and the occupational therapist and I choose the one we thought would be best. At 4:00 I came dragging home to find Jack with his kind and lovely young physical therapist. Jack was striding, I might even say prancing around the house pushing his walker.

“That’s enough now, Jack,” the therapist told him.

“I can go a lot longer.” His chest was thrust out, his belly sucked in. I swear to God I expected him to beat his chest and proclaim, “Me strong like bull.”

I put my purse down. “Jack. I thought one of the reasons you can no longer use the walker is because it hurts your shoulders.”

He glared at me and kept prancing from living room to kitchen.

You’ll forgive me if, after a full day of making arrangements for the wheelchair, I was confused to see him marching along behind the walker. However, mine is not to reason why where Jack is concerned. The physical therapist left after giving Jack the hug he insisted upon, and the evening might have gone along smoothly from there. Except an hour later he was in the kitchen moaning and trying to rub medication on his shoulders and back and neck which were killing him.

Yes, I should have kept my mouth shut, but when I finished rubbing the medication on him, I could not prevent myself from saying, “If you hadn’t strutted around like a peacock for the physical therapist, your shoulders would not be killing you now. You need to tell her honestly how you’re feeling, not overdue it just to impress her.”

Predictably this suggestion did not go over well.

“When a young, pretty woman pays attention to me, my pain goes away!” he shouted. “I can’t help it if you don’t understand that.”

What I heard was, “If I had a more attentive, prettier, younger wife I’d be completely cured and out dancing in the streets.”

No, he did not say that. Nonetheless, it’s what I heard.

We glared at each other a moment and then each of us retreated to our separate bedrooms. I was not feeling particularly loving at that moment and I’m willing to bet Jack wasn’t either. This morning I am still a bit shell shocked, though we got through the preparations for the day and even talked a bit about what had happened. At some point I read him an obituary for a friend from his day care who recently died.

When I finished, Jack said, “My obituary should say, ‘He was a deliberate asshole. Loved to shake people up by keeping them off balance and upset.’”

I did laugh but I did not tell him he was wrong. Honestly, the way I feel today I doubt it’ll be up to me to get that obituary published. I cannot imagine I’m going to outlive him.

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