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.

Forward into the past

It has been an…interesting…couple of months here. In her recovery, Jacquelynn seems to have hit, at best, a plateau. We even had one incident of her waking up and not knowing who I am, which hadn’t happened in almost a year. Obviously, these are NOT ideal developments, but these are hardly the peak of recent events.

To be perfectly blunt, we’re out of money. I have paid the September bills, but October is a huge question mark. This obviously carries its own stressors, but Jacquelynn and I thought we had figured a way forward:

Just over two weeks ago, I called her mother. Yes, the same mother who has consistently declined every opportunity to be of any help whatsoever, repeatedly insisting that we should move out there and take care of her, as though Jacquelynn’s situation was, at best, an afterthought and at worst, a fabrication. But I had an idea, and with Jacquelynn’s blessing, I made the call.

The proposal was this; we would sell this house and move out there, and in partial payment for the use of the guest house I would care for the grounds, the houses, and assist her in any way she required, so long as it didn’t interfere with my ability to care for Jacquelynn.

Instantly, Mom was (surprisingly) very supportive of the idea, offering additional suggestions and continuously repeating “Taking care of Lynn is the most important thing”. She even (very wisely, in my opinion) suggested that we come out for a couple of weeks before selling the house and just live, making certain that we could all get along and that the grounds and home were a place we felt she could heal. We spoke several times that day, her calling with new questions and suggestions each time, and ended the day feeling very positive about what was next.

After my initial shock at her willingness to accede, I related our conversation to Jacquelynn, and we prepared to start packing. I even extended the lease on our car (which was due to be returned that very day) for two months to ease the first round trip both comfort-wise (the truck is very uncomfortable for Jacquelynn), and in terms of fuel mileage (12mpg in the truck compared to 37+ on our last trip in the car).

In hindsight, the next morning’s phone call from Mom should probably have been expected, given the history of this relationship. With a handful of excuses, each sillier than the last, she forbade us coming out yet, and proposed that we could visit for a day sometime in October or later.

Jacquelynn was crushed. Even though she’d awoken the previous night crying that she didn’t want to leave, in the light of day, it made perfect sense to do so, and having that option ripped from us was a panic-inducing moment, and to Jacquelynn, it was a cruel and savage betrayal. Perfectly in line with her experiences with her mother, in other words.

We’ve been reeling and scrambling ever since. Although we both know full well that she’s not safe on her own for any extended period of time, I’ve been looking for jobs selling cars again. There is a huge AutoMall less than a mile from the house, and I’ve been hitting them all up, to no avail whatsoever. For obvious reasons, I need to be as close to home as possible, even as I’m fully aware that any such endeavor is as doomed to failure as my last such attempt; my time at Mercedes-Benz was sabotaged by the fact that I was never really present for the job. My mind was at home with my wife where I was needed, and that situation hasn’t changed nearly enough for me to be able to focus on that kind of job.

So, finally, on this Monday, I made the final decision to “let go and let God”, proceeding with faith and creating as productively as possible in my woodshop to fulfill current orders and create new business. Within an hour or so of making that proclamation, I hit a terrifying wall.

Panic attack. Yes, a full-on, triple-red-alert anxiety assault. In mid-conversation, my head began to fill with a roaring noise like a wind tunnel, my pulse raced, and I felt as though an elephant was sitting on my chest. An elephant with giant, Tyrannosaurus claws. Sweating profusely and shivering at the same time, it took me a while to realize what was happening. when I finally figured it out, I excused myself to a quiet corner to meditate and, with the help of a meditation app I use frequently, was able to find the calm within. It wasn’t a complete recovery, but I was able to function, which was a marked improvement. And it showed me a new experience I never wanted to repeat.
Now, regular readers will know that I’m a believer that life happens for us, rather than to us, and I was fully cognizant (at least as soon as the worst of the panic subsided) that there must be something within this hole into which I’d fallen that I need to see. But, apparently, I didn’t see it soon enough.

The second attack was much more intense.

Jacquelynn and I had been talking for some time. Now, we all know that she occasionally struggles to find the right word and has some difficulty expressing herself. But some 30 minutes or so into a conversation that was making zero progress whatsoever, I suddenly realized that the difficulty was in me, not in her. She never struggles this much for this long, but for the last half-hour or so, I hadn’t understood two words she had said; I heard every one of them, but was completely incapable of stringing any of them into anything resembling a coherent thought. It was as though I could see each and every word spinning and floating in the pea soup of my mind, but simply couldn’t grasp any meaning at all. Again, my head seemed to inflate to massive proportions and fill with the wind-tunnel roar. I stopped Jacquelynn in ned-sentence and apologized to her. “It’s not you, it’s me,” I insisted. I didn’t know if I was having a stroke, a heart attack (indeed, the pressure on my chest was immense and the heart rate meter on my fitness watch was reading 143bpm), or if I had just been struck by a complete and total dementia.

Fear really had ahold of me this time. As Jacquelynn talked to me to try to calm me down and bring me back into myself, my anxiety and terror only grew. Finally, I excused myself upstairs to try to settle into the same wonderful guided meditation that had proven so helpful earlier. It was with zero confidence but high hopes that I began the recording, but only minutes in, I heard Jacquelynn’s voice in the background; a whimpering, pleading sound. Fearing the worst (what else are you going to expect in the middle of a panic attack, right?), I sprang to the door to see her standing at the base of the stairs, staring up at the bedroom door. She was terrified for me, so I opted to try to comfort her rather than myself.

I joined her downstairs, and it was now 6pm, which is when we get a broadcast of last year’s Jeopardy episodes on a local channel. This is our favorite show to watch together, so I asked her if we could watch, not talking about anything at all, just watch and try to answer the questions on the show, to focus my mind. Of course, she agreed and we sat in front of the television, she in her chair and me on the floor, and I began answering Alex’s questions. Several minutes in, one of the trivia questions was about and featured a photograph of my personal spiritual guru, the late Dr. Wayne Dyer. I feel a great and intense connection to Dr. Dyer, and as soon as I saw his photo, the dam burst within me and the tears began to flow. It was 10 minutes or so before I collected myself enough to tell Jacquelynn two things; firstly, I really needed that release, and second, I was going to call my doctor in the morning to see if I could get in to see her.

I did, and it was easily the best and most productive doctor’s appointment I’ve ever had. Our doc (CNP, actually), is by far the best provider I’ve had as an adult. Her compassionate, empathic manner and listen-first approach have won her lifelong devotees in Jacquelynn and myself both. She pays attention and provides just enough input to allow us to reach our own conclusions.

She’s also a fellow meditator and spiritualist, as well as a former Reiki practitioner, and it was that revelation which marked the epiphany of the week.

Some background: Early in our relationship, long before her illness or even my meditation practice, Jacquelynn remarked on my sensitivity to touch while I was massaging her arms and calves (where she always carried most of her tension) and suggested I try energy work.

Now, I realize that this is where many will stop reading and jump off the boat, but I hope most of you will stick with me a while longer.  Please.

I studied the principles of Reiki and aura sensitivity, chakra function and movement, and even the manipulation of energy flow through the lymphatic system. At this same time, Jacquelynn was beset by horrible migraines. Not to the degree of some others I have known; hers were infrequent, coming less than weekly, where I know many suffer several every day. But they were becoming more common for her, and ever more intense. When I felt I was ready, we gave it a try, and it seemed that she was very right about my sensitivity. I could “see” the energy flow, and the blockages; the muddier colors and the warm or cooler regions. It took about thirty minutes of initially tentative, then curious, and finally confident feeling and manipulation, until I was totally exhausted, and she was similarly spent. Sweating and pronate on the floor,  I felt as though I had accomplished something, as I perceived her entire energy field as cohesive once more, all of a similar tone and color, with all of the knots and blockages cleared. At the time, she told me that she felt somehow different/better, but that she couldn’t quantify or describe it. The only thing we’re both certain of is that she hasn’t had a single migraine since.

The doctor (yes, I’m going to continue to call her that, even though she’s actually a CNP–she’s a better doctor than any of the MDs we’ve had in the almost 20 years we’ve been seeing doctors together) suggested a new goal; getting myself into a place of peace once more so that I can do my very best for her. Energy work has cured cancers, healed muscles, and SO much more, and I believe that the deep connection we share will allow me even greater access to help and make a real difference in her life and healing.
Heaven knows I can’t make things worse, and maybe, just maybe, I can help her to make them much, much better. Once a great devotee and practitioner of Tai Chi, has asked me to help her to get into it once more. We started yesterday, viewing a basic Tai Chi DVD and exercising just a bit. Certainly improving one’s energy and focus through the martial arts can only help as well.

I believe with all my heart that I had to have those panic attacks to get me to the doctor’s office and to have the conversation which set us on this path.  I know now what I had to see at the bottom of the hole.

So, moving forward, we’ll be looking into our past and working to create ever more miracles in our lives.  Pray for us, if you’re so inclined.

Thank you.