“Why…?!”

Imagine, if you can, helping your wife (I apologize for the gender specificity, but such is our story) to the restroom in the morning. Doesn’t sound so bad, I guess. At least not out of context. Now, imagine that she can’t remember how to position herself on the toilet, so you have to help her arrange her approach, pulling her pants down, and guiding her when and where to sit. Nothing we all wouldn’t gladly do for the one we love, eh? Just to shake things up now, imagine how much fun this would all be if she suddenly and unpredictably flips an internal switch and BOOM doesn’t trust or know you at all? She has to go so badly that she’s in tears from the effort to hold it, but is 100% convinced that you mean her harm, so she refuses any and all assistance from you, crying and batting you away with weeping pleas of “why?”. You want to calm and assuage her fears; you want to bring her back to peace and help her to relieve herself safely and comfortably, and you really don’t wanna deal with another puddle of piss and shit, trying to clean her off while she weeps and resists the intimate and invasive touches of a stranger she is legitimately afraid of and intimidated by. Those stains don’t come out of a memory foam mattress, by the way. No matter what the care instructions say.
Let me throw in one more wrinkle; while she doesn’t consciously know you, she has spent the last twenty years learning how best to pick at you, and she knows instinctively by now just what to say to most quickly and effectively piss you off. She knows your tender spots, and she ain’t afraid to use them against you. Normally, you would be able to compartmentalize the experience and act from the fact that this isn’t really her doing and saying these cruel, horrible things. It’s the disease, all the experts tell you to remember. But you’ve been at this for two years now, and haven’t really slept sufficiently in months, so your skin is pretty thin and your judgment is for crap.

This is every morning for us now. Often, multiple times per morning. No rules that it can’t happen this way at 2:30 in the afternoon, either. Or at Walmart.

Who Am I?

That’s a question I have to answer every morning now, and often several times throughout the day as well.  Some days it’s clear that I could probably tell her that her name was Barbara Eden and she was once a television star, and she’d believe that as easily as anything else.

Almost worse, I don’t really remember the Jacquelynn I met and fell in love with at all anymore. Sure, I have (damned few) photos, and a few things she wrote to me. But I don’t recall at all what it was like to talk to her; the lilt of her voice or the light in her eyes. Her relentless wit and even more strident integrity. I see all of these things in the abstract, knowing them intellectually, but holding no emotional content. How she felt in my arms, the smell of her arousal and the ring of her laughter may as well be words in a book written by and about a total stranger. I fear I may never recover those memories, the glories and the textures of a twenty-year love affair. I fear those concepts may never have an emotional context again.

Like I fear SO MUCH these days.

It is a paralyzing thing, this fear.

Like the fear of her going over the edge into a rant or tirade in the book store because she can’t find the magazine she’s apparently searching for. Of course, she can’t communicate to me just what kind of magazine it is; cooking/women’s interest/dogs/fashion, etc. Her vocabulary is down to probably less than a hundred or so words now, and finding the right one for any given situation is correspondingly difficult even without the trouble she has just speaking at all. Her voice has grown so faint that unless she’s just highly agitated (read: pissed off), then it’s all but impossible to hear her from more than a few inches away. Even if she begins a sentence in a semi-normal speaking tone, she’s bound to be but barely whispering within four or five words.
So here she is, insisting on a certain magazine but refusing to actually go to the magazine section to search for it, and me begging her to try to help me understand what she’s after so I can help while I’m also trying to prevent her asking the clerks in the store for help. Why not ask? Am I too much man to ask for help? No, actually, I’m not. What I am doing is attempting to protect her from further upset, because (kind though they may be, and most are), the clerks aren’t going to be able to understand what she’s after either, and she’s going to either

a) get angry at what she perceives as inconsiderate, unhelpful employees, or

b) (and far worse, IMO) have her inability to communicate clearly illustrated in a way that she can’t blame it on convenient scapegoat me.

Option B is exactly what happened, and she allowed me to lead her out to the car, weeping all the way.

We seem to have reached a point where we simply may not be able to communicate anymore. Most of the time it as if she were simply pounding on random keys of a typewriter and reading it. When she does use actual words, she mutters them subsonically and they come out in no coherent order, like they were routed through a blender set on puree.

For this and SO many more reasons, I have begun the process of filing for guardianship (how is it that being married to her doesn’t accomplish that, by the way?), as we waited too long to sign a Power Of Attorney. Even if she were willing now, she’s so far beyond competent that it would never stand up in court. This will be the first step in finding permanent placement for her, as soon as possible. I’ve also applied for Medicaid coverage to help pay for it, and I’m hoping the process won’t drag on for too long. She’ll hate it initially, but she’ll be safer and, eventually, happier. I’ll be getting more training for the dog and me, so he’ll be well enough behaved to visit her.

Yes, the idea of “putting her in a home” is repugnant to me, as it is to her.  But my options have run out.  I can no longer care for her safely at home, and Medicaid is never going to approve full-time home care for the schedule of a car salesperson.  And returning to work selling cars is no longer simply an option; it is a necessity and an immediate one.  If I’m not working somewhere in May, then the likelihood of being able to pay July’s bills is pretty much nonexistent.

And it feels like the ultimate betrayal.  Yes, I KNOW is not an actual betrayal, but that isn’t how she’s likely to see it, now is it?  She’ll get over it, but it’s going to be god damned hard to do nonetheless.

Delays, and Apologies

This will be short, friends. Short and sweet.

Things with Jacquelynn have not been fun this last while.  There are still good days, but they’re often bracketed with mania which makes managing her care a challenge, at best.  We’re contemplating a number of options, which include possibly selling the house and relocating altogether.

As far as this blog goes, I have simply been far too busy and stretched too thin to write.  I’m not quitting, but I don’t anticipate frequent updates soon.  Over the last few months, I’m averaging around 11 hours of sleep weekly (though the last few days have improved on that quite a bit), and am kept constantly running just to try to keep Jacquelynn on an even keel.  I compare it to a single parent of a terrifyingly intelligent toddler who is also prone to unpredictable outbursts of mania and even (though rarely) violence.

I beg your patience, and I’m grateful for your continued prayers and bright, beautiful, hopeful thoughts.

Matthew

On The Subject Of Miracles

It’s pushing 10 a.m., and Jacquelynn is finally almost fully alert. It can take a while for her to get going, but once she’s up to speed, it is truly remarkable what happens. Her physical presence is stronger; her sense of space, her posture, her confidence. She walks rather than shuffling, she stands at least 2″ taller. She expresses herself more clearly, hunting for words less and speaking more confidently.
A nightly habit of ours is watching Jeopardy together. Lately, she’s begun answering the questions! Not parroting what she’s heard and not stammering around them, but actually answering them correctly even when the contestants don’t. Words haven’t come quickly to her for a long time, now, but when she knows the answer, the words jump out, competing with me again, the way we always did.
Tasks that baffled her only weeks ago now come easily, instinctually; I left the house on a short errand and she thought of one question before I was even to the end of our street, and the smartphone that had so confounded her was suddenly a familiar device, her ringtone startling me in the car, as she hadn’t successfully called me (or even answered a call) in almost a year. Only days ago, she reached up and casually pulled the chain to turn on a lamp in the family room as the sun’s influence dimmed. Insignificant? Perhaps not when you know that only one day earlier she had struggled with that same lamp, as she had for many months until finally giving up and asking me to turn it on for her. She didn’t even realize she had done anything unusual, either; after all, she had just turned on a lamp like people do every hour of every day. Just as dialing the phone hadn’t seemed important; just as gliding into the front seat of the car where she previously had such difficulty has seemed so normal; just as her increased appetite and more energetic stride and the bounce in her step are so easily accepted as “everyday”.  Every growth and improvement in her carriage and cognition feels perfectly commonplace to her, as the improved access to that portion of her brain translates to the feeling of normalcy to each “simple” task.
Every day, I see more of the Jacquelynn I fell in love with nearly twenty years ago. The wit, the passion, even the slightly naughty gleam in her eyes. The smile. she’s always had such a ready smile, but these last many months it has been an almost empty expression; shades of the blank look so prevalent in dementia wards. But not now! Her wide smile once more has the layers of personality and mischief and subtext it had long lacked.

When one reads and researches this disease as much as I have, certain patterns in the typical decline become clear. It is common, for instance, as a patient’s cognition worsens, for their world to shrink. It often begins because they’re embarrassed with their difficulty expressing themselves (this was Jacquelynn’s reason). Tragically, it also happens as people quietly distance themselves for terror of watching their loved one decline (and inevitably also the fear of being asked to help). Eventually, their universe becomes a few rooms and one or two people. Even when they lament their lost friends and family, they resist including them. This had clearly happened here over the last nearly two years. After my recent trip to the hospital and the trauma of staying with/depending on our neighbor for those two and a half days, she’s been reluctant to include Joyce or even to leave the house unless we were headed to WalMart, as there is one very dear man there whom she loves visiting with. Even then, she tired so easily that the trips left her exhausted and vaguely moody.
Not now. She aches to expand her sphere once more. Her energy level has me keeping up with her at the grocery rather than the typical reverse, and (because I’ve kept all the relevant phone numbers and maintained some of the contacts), she has one of her dear friends and former coworker coming to visit this weekend! She is SO excited to broaden her world once more, to reestablish those connections, that she’s already starting to plan a get-together with several friends from that same job.

Miracles happen every day. Conception and successful childbirth happen many thousands of times each and every day, and I challenge you to describe a more miraculous event. But we’ve assigned such huge connotations and religious implications to the term “miracle” that we feel compelled to dismiss or explain away occurrences with no logical explanations within our experiences. But spontaneous cures and recoveries have been documented throughout history. Cancerous tumors have disappeared; patients with shattered spinal cords get out of their supposedly permanent wheelchairs and walk away; there are countless examples available within a few keystrokes online, with so many simply dismissed as “unexplained”.
A very basic (and highly oversimplified) overview of the function of Alzheimer’s disease concerns the formation of protein plaques (amyloid) in the brain. These plaques block the flow of electricity and nutrients in the brain, choking off individual neurons and eventually entire portions of the brain. While these plaques remain, growth and regeneration of neurons is impossible. As the plaques spread, a patient’s access to memories and even aspects of their personality is lost. This loss is (according to conventional/Western medicine) permanent and irreversible.

Last week, we had a bad day. I would even say a very bad day. A very bad and extraordinarily incredible day. How so? Let us start at the beginning:

It was a very good night, Tuesday overnight; good meditation overflowing with gratitude, a few laughs at the television, and Jacquelynn was very quickly asleep. She slept quite well throughout the night, too, only getting up twice in the night to go to the restroom then getting almost instantly back to sleep. The early morning was a bit anomalous, with her seeming a bit disconnected and frightened, but she never lost control or awareness, and after riding her exercise bike for half an hour, she was eager to get downstairs and start the day. She was especially buoyed by the return of her favorite morning TV show in reruns of Leverage. She truly enjoys it, and it had been off for two weeks for the holidays.
It was at lunchtime that things began to go a little south. After we had done her shoulder exercises and come back downstairs, I asked her if she was ready for her noontime pills. When she expressed some concern with having just exercised, I told her we could wait, but not too long (I try to keep them spaced out several hours apart), and that is when she got angry with me. In moments she was denying my identity as her husband and accusing me of stealing my ring from him, but oddly she never felt frightened enough to cry for help as she so often has, and she calmed quickly when we called Joyce over.  In her role as friend and kind of a touchstone from outside the house, Joyce always seems to help calm her. I carried her bike downstairs while they spoke and she rode off her nervous energy while talking to Joyce and me. All seemed well.
But she never shook the fear that episode instilled in her. She wept lightly several times. I tried to comfort her and calm her, reminding her that if we believe (which we do!) that life happens FOR us rather than TO us, then this, too, had to have happened for us. So we need only to figure out what it is trying to tell us. This seemed to help a bit, but only for a short while. After dinner, she seemed to get worse, withdrawing further into herself until finally, around 6, she got panicky again, and asked me once more to call Joyce. Just hearing her on the phone calmed Jacquelynn a little, and she agreed to get back onto her bike (it really does help her to focus and burn off her nervous energy).

Now is when it turns into an AMAZING day. Pay attention.

While pedaling away, Jacquelynn began working through explaining to Joyce and myself what she believed was causing her to feel so unbalanced. After surprisingly minimal difficulty with her words, she explained that she believed her medications were to blame. This struck an instant chord with me, reminding me that I had not refilled her Estradiol prescription. Her hormones are badly out of balance again, and THIS is what these episodes were trying to tell us.
Please understand that this conclusion requires many cognitive and deductive faculties that Jacquelynn simply did not have only a few days earlier. This means that, as I have believed/suspected for over a week now, that neurons are regrowing and regenerating. This in turns means, all but indisputably, that the Alzheimer’s plaques have been truly eradicated from her brain; with those amyloid proteins strangling and isolating neurons, such growth is simply impossible.
It took a day to get the prescription refilled, and there was some anxiety in the interim, but within hours of taking the medication (it’s an every-three-day patch), she was visibly and perceptibly calmer and more stable and has remained so since.

With the amyloid plaques still extant, Jacquelynn’s remarkable recoveries of the past few weeks simply would not be possible. Hence my conclusion that the causative agents in her brain are gone and what we’re experiencing is her brain healing; neurons regenerating and neural pathways clearing. To use an analogy I often refer to when discussing this with her, the lights are coming on, and some one’s home!

We are referring to this as our Christmas miracle. Our doctor, whom we consulted today, ascribes it to many things; diet, meditation, exercise, and, undeniably, the limitless flow of positive energy. I’ve stated before how much we like her; she gets it. She even tells us that our visits calm her and bring her the positive energy she sometimes needs.
I’m not what one would call a religious person, and neither is my wife. To some of my family’s consternation, I no longer call myself “Christian”. SBNR (Spiritual But Not Religious) is how it’s stated online now. So please understand that when I use the term “miracle”, I’m not talking about conferring sainthood to a uniquely blessed individual or presuming that we are in any way more special or deserving than any other human. I’m talking about the most commonplace healing in the world. It has been said for millennia by many of the greatest spiritualists and spiritual teachers in history that the only true healing comes from within. Our experiences wouldn’t be remotely controversial in 18th Century China, but in 21st Century Ohio, our use of the word “miracle” is interpreted as either a hyper-religious or supernatural claim. It is no such thing.

What it is is real.

The Year Of…?

I can not put the words together to describe this year. Those of you who have followed our path already know, and I’m not going to spend this space dredging up the worst memories.
What I am going to do is this: I’m going to paint a picture for you. A picture of love and prayer, of sharing and caring, of giving from the heart.

The year of 2018 showed us the depths of love possible from people whom we truly barely know. I’ve called all of them “friend”, and treasured their place in my life, but nonetheless stood (and still stand) gobsmacked at the kindness and generosity of so very many people. From financial contributions to countless prayer, meditations, well-wishes, and just plain old positive energy.

I could justifiably label 2018 the year of fear, or the year of my own breakdown.  How about The Year Of Failing Magnificently?

No.

I prefer The Year Of Miracles. For all the angst and tears and drama this year sent me, it all came with a message. I had to hit rock-fucking-bottom to hear it, but it was a message of Miracles.
I tried to do the math, but A) Math has never been my strongest suit: and B) I am way too lazy for that crap. But I know that from my Facebook friends and family, our neighbors and local friends, and all the people who have told me of the prayer chains started in their churches and places of worship, all the meditation groups and all the forums I’m involved in, we have had literally thousands of prayers and hopes and meditations and thoughts sent up and to and for us. So much loving energy cannot, will not be denied.
So, with so much love floating in the ether for us, Jacquelynn and I decided that a Christmas Miracle was imminent. Inevitable, even.

And we were right. Our Christmas Miracle has been unfolding since the very early hours of December 25, and every day (some days, almost every hour) has brought us a new sign and indication of healing and recovery. We have both always believed in miracles, and I do not believe they are rare or even uncommon. I believe that miracles happen every day, and we all spend so much energy denying, explaining, or discounting them that we refuse to recognize the holiness of which we are ALL capable; the presence of God in each and every one of us.  The miraculous in our everyday.

So the picture I’m painting for you is this: I look out, with my mind’s eye, onto a vast sea of faces. Countless faces of beautiful and fascinating variety and diversity, each with one thing in common; they’re praying for Jacquelynn and me. Each and every one sending their love and blessings in whatever way they choose, each achingly selfless in their willingness to spend time and energy on us during this crazy stressful time of year. I recognize many of these faces, too; family, of course, as well as customers, co-workers past and present, and artist friends from distant corners of the world, as well. There are the friends I’ve made who have shared my journey as caregivers for their own family, as well. But there are many, many more I’ve never seen before, but I know who they are, at least in the abstract. They are the living embodiment of love, as are we all, if we so choose.
As I gaze upon this throng, I feel their love and their prayers cascading over me, flooding me as though I were at the base of a giant waterfall, but I’m not drowning; I’m buoyed and elevated, lifted up and supported by countless unseen, unfelt hands. And in the wake of all of this joyful, illuminating love, all I can think to do is to return it. To share it. To amplify it and send it on a return course increased a thousand-fold. To wish for each and every one of these beautiful faces every healing and blessing their lives desire. To want even more for them what we so desperately want for ourselves.
I send that same energy and love to each of you reading this. I love you, and I thank you for all the healing, loving “Miracle Juice” you’ve sent our way this year. You’ve all helped as you were able, and I thank you from the bottom of my heart.

 

The Year Of Miracles, indeed.

Back From The Edge

I was finally out of tears. They would replenish eventually and flow freely once more, but for now, I had sobbed and shaken and pounded my head into the sparse cot mattress as much as I could. My self-loathing and my fear and my grief had exhausted themselves and me right along with. There was nothing left, just a hollow shell of Matthew, dead inside and with no clue what came next.
I sat up stiffly, robotically as I saw in my mind’s eye a text I had received weeks earlier from my oldest sister. After I had related to her my latest breakdown and my fear of the imminent threat of another, she responded with a simple question; “Have you been doing your meditations?” I had brushed it off then, responding with something uncharacteristically flippant. But I hadn’t been, and only now, in my darkest possible hour, did I realize the importance of her inquiry.
So I stood, wrapped the stained and coarse sheet/blanket around my shoulders, sat on the cold concrete floor with my back against the cold concrete wall, and closed my eyes…

Friday, Fourteen December 2018
The date’s going to be easy to remember, as it was the birthday of a former flame, but its significance has been massively boosted to levels at the same time both nefarious and beautiful.
It started out normally enough. Better, actually, as Jacquelynn and I had both slept pretty well Thursday night. Thursday had been a great day, honestly. Jacquelynn had greatly enjoyed picking through her wardrobe and finding a 10-snap blouse which had been a perennial favorite so long ago. Being 80 or so pounds lighter now, it obviously didn’t fit quite as provocatively as it once had (she had used its snugness to great effect emphasizing her decolletage more than once, much to my thrill), but it made her feel pretty and it brought back fun feelings as I related my adventures working my way through those snaps not so long ago. She had even worn a matching pair of workout pants I had bought her last year which hadn’t been as comfy as she had hoped then, but she was embracing new that day and had enjoyed them all the day long.
But Friday was starting differently. Initially, everything was fine as we were watching a show we both quite enjoy as she was getting in her morning ride on her recumbent exercise bike. Then she began to tell me how she wanted to wear the things we found for her the previous day. Thinking she was referring to the clothes she had so enjoyed, I told her they were all over next to the chair we use to get her dressed. But she wasn’t talking about those, and she was having great difficulty expressing to me what it was she wanted. “White” was about the only point she could successfully communicate, then she reached forward and slapped her hand down on her shoe as she was peddling. White shoes? Yes, she insisted, the white things we found for her yesterday. Not wanting to upset her as there were no white shoes or white anything from yesterday; she had been in all black and loving it all day Thursday, I told her that she could show me when she was finished with her ride.
That didn’t work for her. Her difficulty getting me to understand was making her angry at herself and at me, too. She wanted to get off the bike, so I helped her up and, at her request, to the bathroom, where she grew angrier and began again to cry. When she came out, she was full-on riled, and almost instantly began ranting about where was she and what was I doing there? She charged for the door on her normal escape trajectory when these episodes hit, and I moved to block her. “You know what’s happening, Jacquelynn”, I told her firmly. “Stay calm. I’m not going to let you do this to yourself again.” Then began her calls for help. She does this when she feels lost and trapped. The time she went to the hospital for this, the visit that led to her diagnosis, culminated with me restraining her outside as she tried to run away toward the busy highway behind the house. She repeated her calls for help, and I loosened my grip, hoping to do as I usually do, and lead her around the house evoking memories around familiar (preferably shared) items and places throughout the home. By now, we were essentially shouting at one another as I seemed to descend into the same hole she was in, though I was totally unaware of that descent at the time. Then she lashed out at me with one of my old tricks; I often invoke her memories of people, and a couple of times, bringing up her reconciliation with her father before his death has helped. “Your dad!”, she shot at me, and I was instantly furious. I shouted at her and berated her for mentioning him when she never met him. “He’s been dead thirty-six god damned years”, I vividly remember shouting at her, demanding an apology. She wanted to go downstairs now, but her knees were wobbling and she was shaking furiously as she responded with maddening calm and a soft and reasoned apology.  Badly as she was shaking, I wouldn’t let her take the stairs, but my fury was fading, so I very firmly guided her back to the bed, to sit safely. I didn’t realize it then, but I do now as she did then, but I was the one having a panic attack, fully realized and greater in magnitude than I ever had before. Our roles had shifted as I raged at her about my father and now she was in full control and mine was long lost in the rearview mirror.
Relative calm was eventually restored, but I was still in a very dark place. I don’t recall much vivid detail of the next while, but she wanted Joyce’s input, as our neighbor and her only real friend in the area was often a calming influence on her and myself both, though she had never really seen me incensed like this. Joyce was just out walking her dog and Jacquelynn couldn’t get her attention through the closed doors, so I turned the key roughly and flung the screen door wide so she could shout just as Joyce was getting ready to go back inside her own house. she came over at Jacquelynn’s begging, and I retreated upstairs. This wasn’t a moment I was eager to share, so I fled to the upstairs landing where I got dressed out of sight from below, then sat in the hall to sulk.
Listening to Jacquelynn struggle to explain to Joyce what had happened and why she needed her help, it was clear that Joyce wasn’t getting it. “She’s trying to tell you that she’s afraid of me, and I think she probably should be.” “Come on down here, Matthew,” Joyce plead with me. “I’d rather not.” I was in full self-loathe by this time, and as I came down, Jacquelynn was relating to Joyce how I had hurt her, making motions with her arms flailing, implying how I had flung her around forcefully.
What? I don’t remember that. Dammit, I did NOT do that! I’ve NEVER hurt her, and I said so. “Until now” was her sullen reply. No. “I’m going for a walk”. And I did. I was gone 30 or 40 minutes I think, and I had by then convinced myself that if I had hurt her, especially if I had done so and didn’t fucking remember it, then she was obviously completely unsafe around me. Something had to be done. Lots of things to do occurred to me, too. Maybe she’d be best off if I just weren’t there anymore. Of course, I could never live with myself if I just abandoned her, so the best answer would be if I…
By the time I got home, I had finished that thought and had it firmly in my mind. No actual plan for making it happen, but a determination that it was the only answer. Joyce left as soon as I returned, and I told Jacquelynn that I was going to arrange for her care then I was going away forever. She would be safer, and that was all that mattered to me. When I picked up the phone, though, I knew who I was going to call.
“9-1-1, what is the address of your emergency?”
I submitted myself for a psychiatric evaluation. She said I hurt her, and if I did, she’s not safe around me. I NEED to know if she’s safe around me. After a prolonged police interview of Jacquelynn and myself individually, we went to the hospital in an ambulance. It wasn’t until after I had answered every possible question with total honesty at least twice and traded my clothes for a hospital gown, signing receipts for them and my valuables, that I was informed that this was an involuntary 72-hour hold. I was essentially under arrest for 3 days. WTF?! Jacquelynn isn’t safe on her own for more than an hour or so! Three fucking days? NO. God. Damned. Way.
But I had signed the consent to treat, and I unless I jumped the security guard and stole her handgun, I wasn’t going anywhere. I was on suicide watch and in hospital custody for at least 72 hours.
Fortunately, Joyce answered my call and came to get Jacquelynn. She’d care for her as best she could, following the instructions I hastily jotted down on the paper provided by my nurse. worry about caring for myself, she’d take care of her “Lynnie”.
For insurance (or lack thereof) purposes, I was transferred downtown to another facility. the tenth-floor psych ward at Good Samaritan Hospital in Cincinnati. Four concrete walls, a bathroom with a fabric “door”, and a plastic bedframe under a 4″ thick “mattress”. Two sheets, two pillows, and a six-story drop should you figure a way out the triple-paned windows with quarter-inch plexiglass secured to the frame with sheet metal screws. Even the mirror in the bathroom was metal screwed into the wall. No glass to be found.
It wasn’t until the nurse came around about 30 or so minutes in that I learned the real killer news: the 72-hour hold doesn’t include the weekend. I would be in here until at least Wednesday. I couldn’t even react. Not the way my mind screamed at me to, anyway. Rage and fear at what I had done, leaving Jacquelynn for five fucking days? If things with Joyce go even a little badly, she could be catatonic or dead by the time I get out of here! I wanted to rage and run and steal a car to get home to my wife! What in the holy hell had I done to her? What the fuck was I going to do now? When the nurses were done with my vitals and physical check, they left me alone, and I collapsed onto the bed, sobs convulsing my body as my tears soaked the slightly medicinal-smelling sheets.

…Unsurprisingly, nothing earth-shattering or paradigm-shifting happened in the first few minutes of my meditation. I breathed deeply, shifted my posture a few times, and simply observed the shifting patterns of color behind my eyelids as my imagination played with the minimal light finding its way through my closed eyes. Eventually, patterns developed. The lights led me deeper. Shapes of eyes, unblinking and all-seeing, pulled my awareness inward. I have no more recollection than that of anything I may have seen or perceived, and I’m sure I dozed at some point, but hours passed unnoticed. I think I even got up and walked around the sparse room, maybe even up and down the uncrowded halls, never making eye contact with anyone, but vaguely noting appearances and minor details. There is now a dinner tray in my room, a few green beans eaten and one bite taken from a disgusting “double chocolate bundt cake”, per the slip on the tray. The fish is of unknown origin and I won’t touch it, the “rice pilaf” so golden yellow it appears to have been spray painted. Since I’m pretty sure this place isn’t using real saffron in it’s “nutritionally balanced” fare, I seem to have decided to leave that alone as well. Honestly, I don’t recall much of anything during that time with any clarity.

Friday night. I’ve spoken briefly to a couple of people, and I managed to speak to Joyce and Jacquelynn briefly. That didn’t help, as Jacquelynn had refused to stay with Joyce and insisted on staying home alone. At least she wouldn’t be upstairs, but would be sleeping in her recliner instead. I stayed up until they turned the television off at midnight (Central Intelligence with Dwayne Johnson and Kevin Hart was better than I would have expected), then I returned to my room, where I discovered that the clock was also a radio. Killing the interminable silence did help a bit, at least. Moving the cot to a more “comfortable” spot in the room (cell?) did not make the cot itself comfortable in any way, though, but sleep wasn’t really on my agenda anyway.
More meditation was. From midnight until about 2 a.m. More eye shapes. Gently, I begin to allow myself to relax. “Let go, and let God…” repeats on a loop through my subconscious. I feel my breathing deepen, and stabilize. My pulse, which has been pounding in my throat for the last 15 hours or so, slows and finds its normal rhythm. The colors coalesce once more and lead me deeper. No longer either conscious or asleep, understanding begins to grow.
I’ve skirted the facts a bit recently; admitting them on the surface but never truly embracing them. I have held onto hope and let it cloud my decision making. I have delayed and denied the need to seek the help we need. It is also true that I have failed to care for the caregiver, and in that failure, I have failed the patient, who is also my wife. I failed to stay in touch with my center, with my true self and with the divinity that lives within us all. My sister was right, and in failing to listen to her, I had failed on every level. But this failure was NOT permanent, was not irreversible, was most definitely NOT fatal, to me or to Jacquelynn.
My gentle mutterings, my “mantra” shifted in mid-sentence. “Let go and let God” became my tried and true “Life happens FOR us, not to us…” With that shift, it was made clear to me that this, too, was happening FOR us, showing me the way forward. My eyes jolted open, my thoughts clear and focused. I know now why I am where I am. Without this wretched experience, this closed environment shut off from all distractions, I would never have retreated within, never sought my answers in the only place they could truly be found.
Saturday morning came very, very early. My interview with the psychiatrist netted me the best evaluation I could hope for.  He was impressed with my retreat into meditation and concurred that having gotten away from that habit had indeed been costly.  No, he would not consider discharging me today, but tomorrow was a real possibility. Certainly, he assured me, I would NOT be here for five days. I should participate in group therapies and continue to meditate and look within. I should take full advantage of the situation I am presented with, and my discharge would be considered based upon my progress and the input of my nurses, therapists, and the opinion of the psychiatrist going forward.
Saturday was about 3 weeks long, but I was able to talk to Jacquelynn a couple of times. No, things were not all peach blossoms and fairy dust at home, and poor Joyce was stressed to her limits and beyond. But I convinced Jacquelynn to stay with her overnight, so I knew she would at least be safe, if very stressed. But I got through and even had a very positive experience in one group. sunday began with a quick wink and nod from my nurse, a smile preceding a remark that I would probably be going home today. My suicide threat status had been downgraded from imminent to moderate, which is low as it could possibly be given my statements at the hospital. By noon, I was wearing my own clothes again and awaiting the return of my valuables. At one, I was in an Uber and on the way home.
Life changes. I managed to save myself, to walk myself back from the ledge and to survive to care for the most important person in my life, the way I promised to do on April 7th of last year, when I stood on our cul-de-sac among friends and family and put the rings on her hand that no longer fit because she’s still losing weight. I will never lose track of what’s truly important again. I will never skip a single day of meditation again.
Sunday was spent in the arms of my beloved. Nothing else mattered. I fed her, I bathed her, and I basked in her presence as she did in mine. I’m so glad I got sent home on Sunday, as there are no calls I can make to accomplish a single damned thing today. There is zero guilt in spending the day celebrating our reunion. Tomorrow will begin an onslaught of calls and inquiries which will undoubtedly last the week, but today is ours, and it is the greatest day of my life.

Until tomorrow, anyway.

Thanksgiving, and Giving Thanks

Yes, I’m going to write a Thanksgiving post. Why? Because of all the people I know, I believe that I have more to be thankful for than all the rest combined.

I am truly blessed.

For example: on Halloween Day, I got a call from our neighbor, Sylvia. She asked me (rather cryptically, which is kinda her style) to step outside and meet her on the driveway. She met me there with an envelope and a teary hug. “I wish I could do more, Sweetie. I love you both so much”, then she walked back inside before I could even mumble a confused ‘thank you’.

Of course, there was a pretty greeting card with cash in it. This isn’t the first time Sylvia has reached out to us in this manner, though it’s usually after I’ve done her some small favor. And it’s never been quite so much before, either.
But that wasn’t the end of it. Not by a bit.

Not an hour later, Gunter, our neighbor on the other side of the house, called and asked me to meet him out front. Trudy had done some cooking for us, and he wanted to bring it over. No, Jacquelynn can’t eat it, but it’s kind and generous and I can eat it, so it still saves us energy and money. Of course, Gunter also has an envelope in his hand. As he hands it to me, he tells me to expect more; the entire neighborhood has gotten together, he said, and there is much more coming. He wasn’t wrong.

Shortly afterward, a knock comes on our laundry room door that opens into the garage (we generally leave the garage open for ingress, as it’s much easier for most than our front porch access). This time, it’s the neighbor from 2 houses down, Marylu, who I would eventually learn had orchestrated the whole drive. With a quick “Happy Halloween”, she hands me a plastic pumpkin bucket full of envelopes and darts off, my shouted “THANK YOU!” garnering a wave as she strode quickly away.

$505. Yes, our neighbors pooled together and contributed a total of five hundred and five dollars to us on Halloween day.

Since that time via our GoFundMe campaign and other avenues, family, friends, and friends of friends have added four times that much, allowing us to meet our mortgage obligations and to stave off the wolves until my new job can begin to generate sufficient income to sustain us.

We have SO MUCH for which to be grateful.

Oh, that job I mentioned? I tried to work a couple of different jobs. Leaving Jacquelynn home alone simply was not viable. Even though her dear friend Joyce visited her and provided her company, she was still alone for a couple of hours each day, and it simply couldn’t sustain.  So, an old co-worker and eventual manager at one of the car dealerships I worked for reached out to me with an idea. He is general manager now at a different dealer. What if, he proposed, I could figure out a way for you to stay home and work internet leads for me? Would you be interested?  We’re three weeks in now, and it’s working out great. I’m generating income for the dealer and for myself, and they’re already looking at expanding my role.

SO, grateful.

Which brings me to today.

Over the last twenty months, I’ve tried every recommended way to engage Jacquelynn’s mind and get it/her excited about working toward recovery. Some have shown a little success, but most lasted only a very short time because she simply didn’t really enjoy it, didn’t truly engage.

Late July 1999: Jacquelynn has invited me to her home for the first time. During the course of the afternoon, she teaches me a game I’ve never before encountered; Pente, an adaptation of Japanese game ninuki-renju, one of the oldest strategy games in the world. it’s a simple concept, but very layered in that excelling at it requires advanced, five-steps-ahead thinking. Of course, she completely kicks my ass at it. This pattern will continue for the next eight or nine years until the leathern playing surface and its two back of colored glass stones move to the back of the game cabinet, forgotten and gathering dust.

Over the weekend, I spotted the dusty game set while perusing Christmas decorations. Upon mentioning it to Jacquelynn, her face absolutely lit up. Would I help me try to relearn it? PLEASE?!?!

Today was experiment #1, and her face is still lit up seven hours later. It was nothing instant, but coaching her through the most basic steps, she began smiling quite quickly. I could see her responding to my carefully paced explanations of her options with every new play. The key moment was when I presented her with a scenario which allowed her to choose between a defensive or offensive posture. Just exactly like the Jacquelynn of old, she went on the offense, sacrificing two of her pieces in the hope of setting me up as her prey in the future. She was having an absolute blast. On mutual agreement, we only played for about 20 minutes so as to prevent her getting either bored or frustrated.
But she was on a high for quite a while. It even seemed to bubble over into the next few hours, too; we were watching an old episode of Destination Truth, and she was accurately describing to me how it ends. This from a woman who just recently watched the same episode of Leverage (we love that show) twice in less than a week and remarked that she had never seen it before.

I’m not going to start pretending that we’ve hit the secret code to igniting her total recovery, but seeing her so excited and actively working things out was pretty moving. We’re going to revisit the game daily for a few weeks, and I’ll keep you informed as to the progress.

So, yeah.

 

GRATEFUL.

Anticipating The Sunset

My wife is dying.

She knows it. Even said it this evening. It’s a subject we’ve actively avoided for a very long time now, but things have been turning in this direction for some time now, and no amount of denial or refusal to accept will stem it.

We obviously don’t have a timetable of any kind, and we are 100% going to proceed along the course that got us here. Our experiences over this last twenty months provide sufficient proof for us that the ReCoDe protocol has added time and quality to her life, and we will stay on that path, extending both as far as we may, so long as they remain equal. If quality fades, well, let’s just hope they dovetail nicely.

Saying it openly is the second hardest thing I’ve ever done in my life. Admitting it to myself, obviously, is number one.

 

But having it out there is almost a relief. It’s still something we’re not going to speak frequently of, nor focus on, but hiding from it is unbelievably exhausting.

Denial is a river you swim up against a considerable current.

I’m not pulling this blog.   I will still post to it occasionally, but as has clearly already become the case, it will be infrequent. I’ve had to take two jobs, one in-home and one out of the home, trying to keep us afloat long enough to face and hopefully enjoy what time we have remaining together, and that creates a schedule which makes keeping up with this commitment somewhat problematic.

I’m grateful for all of you, my friends and fellow travelers, for investing your time in reading my ramblings and shedding tears with us. I hope these words have educated, inspired, or perhaps moved someone.   I believe we’re all born for a purpose, and this has been a very important part of mine; my dharma is service, and when I leave this life, I will certainly be able to say that I have fulfilled that mission.

Good night.

Back To The Grindstone

So, I’ll be starting back to work this week, full time.

As you no doubt expect, this causes a certain angst within the household, with us both anticipating a considerable separation anxiety as I will be leaving her alone and to her own devices for full work days rather than the 2-3-ish hours at a time I’ve tried to limit it to for the last year or so.

But perhaps that has been a mistake. Perhaps I’ve allowed (forced?) Jacquelynn to become ever more dependent on me rather than allowing her to learn and make mistakes on her own. I feel like the parent I never wanted to be; leaving my charge to face challenges on her own without being there to back her up. I’m probably every bit as frightened as she is, right now.

The simple fact is that Jacquelynn is better; FAR better than she was last year when I was still working and leaving her home alone for 12-hour days at work. We’ve both just become so totally accustomed to my being here that it has become very scary to contemplate ending that. This will force her to step further outside her comfort zones every day, though, and while frightening as hell, will soon prove to be maybe the most important step we’ve taken in months.

I expect the first week or so will be at least mildly traumatic for us both, but that we’ll soon fall into a healthy and growth-promoting pattern of come-and-go, give-and-take.

We’re grateful for all the immense moral support we’ve received, and we thank you all from the bottom of our hearts.

You will recall my stated intent to begin doing “energy work”, studying and then treating my wife with Reiki principles and methods. Without going into deep detail as I do not see it as my role here to convince anyone or change minds, let alone further alienate skeptics by going into specifics, I will unequivocally state the following:

Jacquelynn is expressing herself more easily and hunting for words less. This, in turn, elevates her mood and state of mind, in an ever-increasing and beautifully self-fulfilling prophecy of improvement; the better you feel, the better expect to get, and the better you will get.

Her balance and physical confidence have also improved. She is less timid going down the stairs. Going up has never really been an issue, but down has occasionally frozen her in fear, with me having to talk her down from a panic more than once, then guiding her down very slowly. But there has been no whimpering, no waiting for me to notice her standing atop the stairway, and very little hesitation at all. She climbs on-and-off her stationary recumbent bicycle all alone, needing only a little guidance to get her feet on the peddles (and less of that each time).

I personally have no doubt about the impetus of these improvements, but honestly, only a fool would question or even care either how or why rather than simply embracing and celebrating each and every victory and piece of evidence of even incremental recovery.

 

She’s getting better.

 

Thank God, Buddha, The Universe and/or any other entity or consciousness you choose, SHE IS GETTING BETTER!

THAT is a truth I can get behind, and which will power me through every day going forward.

Bouncing

Life is a mercurial, unpredictable thing. One day, confidence blossoms and hope flourishes, and the next seems drowned in despair. I suspect there isn’t a path more susceptible to this constant swing between bliss and terror than that walked by the Alzheimer’s family.
The only thing that has kept the despair from winning for the last year-and-a-half is our unwavering (though occasionally difficult to maintain) conviction that life happens for us rather than to us. We believe that this perspective allows us to maintain that hope and confidence in the face of deepest despair.
Still, it can be very easy to get caught up in the angst and anxiety of life, especially when you’ve been through eighteen-plus months of what Jacquelynn has been enduring, and while I would NEVER equate my hurdles as her husband and caregiver with what she’s combatted (and is triumphing over), I can get sucked into the fear and desperation pretty quickly myself. Earlier this week, on Sunday I believe, I realized that something vital and unshakeably important was missing, and I vowed to her to do whatever I could to help return an aspect of it to her (and our) daily life.

That single, vital quality, is fun.

Not “hey look, a sitcom episode we’ve seen eleven times already; there are two funny lines in this one”, but genuine fun. Because, when you get down to it, just what the hell is life for, anyway? If it’s not FUN, why the fuck are we working so hard to preserve and extend it?
Life without fun is life without the experience of it’s single greatest reward; enjoyment of life for life’s sake.
So, late Sunday evening, as we were attempting to get to sleep and Jacquelynn was fighting tears yet again, as I held her head close to my chest and stroked her hair, I promised her that I would make the return of fun a top priority going forward.

Our daily regimen hasn’t changed dramatically as a result, but the atmosphere in the house (even with our air conditioner on the fritz!) is significantly lighter, and aside from a couple of instances of waking up from bad dreams, no (sad) tears at all.
We went to the local SPCA and played with puppies.
She laughed until her sides hurt and tears of mirth ran down her face when I accidentally farted while struggling to get up off the floor.
She has laughed at jokes (and made a few of her own!) rather than simply feigning a reaction to my lame humor.
She grabbed my butt when I was setting up her dinner tray.

Other things have happened as well. I have seen what I refer to as “Old Jacquelynn”, signs of the strong and strident personality I fell in love with so long ago, reasserting herself. As if she’s been struggling to claw her way to the surface, and finally the barrier is thin enough that she can see the light:
We were showering, and when I turn the water off, I have over the last year-and-a-half, grown used to her “Brrr” and a slightly accusatory tone/remark about the chill. This time, however, I was outright shocked when Old Jacquelynn emitted her trademark “BUUURRRRAAAHHHHH!!!”, followed by a chuckle (and another unexpected grab for my tush). It was SO Jacquelynn circa 2010 that I was momentarily stunned. Then she was there, smiling at me with mischief in her eyes and actively drying herself off. She’s done this a few more times since; feeling chilled when she crawls out of bed to go to the restroom in the middle of the night, for instance. It always makes me smile, and going forward I suspect it always will.

Obviously, I did a TON of reading early on about dementias and Alzheimer’s and their progression and effects on people. One thing that seems more-or-less universal is patients settling into “comfort zones”, or routine behaviors. These behaviors or habits become so ingrained as to eventually be essentially cast-in-stone; patients never waiver from nor break out of these ruts, because they’re perceived as safe and familiar.
Jacquelynn has a couple such habits. The first one to develop was in regards to using the bathroom; she would use ONLY the toilet in the master bath. Not the downstairs guest bath, nor the upstairs hall bath, but only the master suite. When I’ve occasionally suggested one or the other, I’ve been met with resistance bordering on anger, so I’ve simply left well enough alone; one thing you learn is to pick your battles, and this one didn’t seem nearly worth the investment.
So imagine my surprise when, just this Wednesday morning, as she was finishing her morning ride on the exercise bike, she gestured toward the downstairs guest toilet and said: “I’m just going to go in there for a minute.” Yes, I helped her negotiate the “unfamiliar” layout, but she never expressed any discomfort or wavered on her decision.
Before you jump to the conclusion that it was just too urgent a need to make the trek upstairs, understand that has NEVER stopped her before. She’s even had a couple of accidents because she was determined to go upstairs.
She is now using the downstairs toilet almost daily, though she is still going upstairs most of the time. According to my research, these ruts are almost never overcome. One “unbreakable” barrier broken.

That thinning barrier is providing “Old Jacquelynn” ever greater access. She’s digging through as we were told never to expect, and I can see the day in the relatively near future where she is once more everpresent. We’re beginning a Reiki energy regimen this week, and I am confident that it will produce eye-opening results.

You’ll know it here first.