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.

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.

Balancing Joy and Fury

I’m not sure how to begin here, as it’s been rather a long time since I last wrote anything, let alone posted to this blog.

It has been a wonderful and exhausting spring and summer and it’s leading to some pretty major changes going forward, but as for the subject of this page, Jacquelynn is doing quite well indeed.

I’ll describe a couple of the “epiphany moments” shortly that lead me to speak so joyfully about her improvement, but it is important to understand that there are also frightening and even horrifying moments still occurring. She is indeed much healthier and sharper than has been the case for a very long time, but she still struggles mightily in some ways.   The most significant of those is in expressing herself. Jacquelynn frequently labors intensely to find her words, and sometimes the words that do come are so completely unrelated to what she’s trying to say that it can be difficult not to despair entirely about her recovery. Of course, as she tries harder and harder, she gets ever more agitated and it gets harder and harder for her to find the words.

So, I sometimes try to help. It’s hardwired into me; I can’t just sit and watch her struggle and get madder and madder. So I “help” by asking if she’s speaking on this subject or about that person. However, she’s so focused that she dismisses any such suggestion out of hand and keeps trying to find her own sentences. But, as I asked if she was referring to lunch and she said “no”, I’m no longer thinking along those lines and it takes even longer to get back to the subject of what we’re going to eat for the midday meal.

Yes, I’m trying to curb my need to help in that manner. I do realize that it’ll likely do her more good to get there organically rather than being led. But it’s awfully damned hard to do.

This last Thursday, July 26 of 2018, provided an infuriating example of how hard it can be to lead her and how working so hard to get somewhere specific can lead her into a heartbreaking catch-22 of fury and tears.

We had an inordinately aggravating experience with a credit card company: in brief, after receiving an alert text about a possible fraudulent charge to our account, I called the alert desk and began a runaround that still has my head spinning.

I should interject here with an important little tidbit of information; we had my name put on the account two years ago so I could deal with these situations if one should arise.  

Combining Jacquelynn’s occasional difficulty expressing herself clearly with the fact that we had awoken only moments earlier (it can take her upwards of an hour to get her momentum going and feel fully awake), the downward spiral of identity verification because the account is in her name (even after they acknowledged the information italicized above) is pretty predictable. Heeding the suggestion of the fraud desk representative, we went to the store (it’s a Meijer card) to allow the manager there to verify her ID so I could proceed to manage the account. We did all of that, and HUGE kudos to the staff there; they went above and beyond in their ultimately fruitless attempts to help. The issuing bank refused to recognize the store’s verification even though it had been their idea, and their escalating badgering of Jacquelynn over the phone even after her medical situation had been explained led her completely over the edge. The more they pressed her, the more shaken and nervous she got, and their only slightly veiled accusation that I was feeding her information to attempt to gain access to the account were the last straw. In my opinion, they had by then made it painfully clear that they essentially didn’t want a customer with her medical issues. She was a total wreck when I finally drew a line through the process and did what I could to close the account.

I feel like shit for my part in allowing it to continue as long as it did, but we’ve really needed that card this last year. Life leads us where we need to go, though, and I fully believe that life led us to close that account for very good reasons.

Now, I recognize the need to protect these accounts and the personal information associated with them.   I’m honestly grateful for their diligence in this matter. But this is the EXACT reason we put me on the account two years ago, and even after acknowledging that, they still refused to help. Maybe they technically didn’t do anything wrong, but they sure as all hell didn’t make any legitimate attempt to help, and that means everything to me.

But, as I implied earlier, many things are truly looking brighter and brighter, and one of those things is subtlety.

Since before Jacquelynn’s diagnosis, her understanding and perceptions have been pretty much strictly literal. Innuendo, hints, subtext have all gone entirely unnoticed and unremarked. In the last few weeks, however, I’ve noticed that changing.   Slowly at first, in fact slowly enough to cause me to question my own impressions. But just a few days ago, while we were discussing my woodworking, she chuckled out loud at the inevitable boner joke I worked into the conversation. Her sense of humor and perception of it has greatly increased as her brain continues to heal. This leads to more flirtatious behavior on her part, and probably inevitably, a bit of confusion as she perceives more layers to each conversation, whether they’re intended or not.  Now, I can barely say “wood” without eliciting a slightly naughty grin.

So, the nuanced and slightly dirty mind I fell for 19 years ago (celebrating the anniversary of our first date this week!) is making a return, and that is a very good thing.  Every bit as surprising and exciting is another aspect to that which has returned these last few days, as well:

Typically, over the past months, Jacquelynn has had a very difficult time following specific instructions. For example, as she tries to help with cleaning the kitchen after dinner, she’ll ask where to put things.   If I tell her “on any shelf in the door of the fridge”, I’m almost always going to find it on the top shelf of the refrigerator, or simply left on the counter. Same goes if I ask her to get something for me; “The red cups, right there on the shelf. They’re right in front of you, Love.” Nothing. I’ll swoop in, trying so hard to be mindful of not making her feel like she failed, and retrieve them myself.

 

Lately, though, not so much. The balsamic dressing makes its way right back to the shelf in the door of the fridge, and when I asked her (I test her this way frequently, to try to hone her skills a bit) two nights ago to get me something from the bathroom counter, there was no casting aimlessly about trying to find it, no “what color is it again?”, no delay whatsoever. She simply walked into the bathroom and came right back out with exactly what I had asked for!

The brain is healing!   Yes, it has much more healing to do, but it is clearly and (in my view) undeniably continuing to heal.

Life does (and will) continue to throw challenges our way, but as we fully embrace the concept that life happens for us rather than to us, we know that wherever it leads us is truly for our greatest advantage and blessing.

It is possible to balance Joy and Fury.  The how of it harkens back to an old and seemingly cliche Native American proverb:

A grandfather is talking with his grandson and he says there are two wolves inside of us which are always at battle. 

One is a good wolf which represents things like kindness, bravery, and love. The other is a bad wolf, which represents things like greed, hatred, and fear.

The grandson stops and thinks about it for a second then he looks up at his grandfather and says, “Grandfather, which one wins?”

The grandfather quietly replies, “The one you feed.”*

Feed the Joy, and try very hard to starve the fury.

 

 

*Credit to oneyoufeed.net for the quote

Time Machine

Flashback, September 1999:

Jacquelynn and I have been dating exclusively since late July, and she has invited me out for this gorgeous Saturday to visit the maze at Grailville and perhaps to walk a while along the beautiful wooded Loveland Bike Trail. It’s an almost 3-hour drive from where I’m staying with My sister and mom, so I get an early start, but I do make one unannounced stop on the way…

When I arrive at her (now our) home, I greet her with the freshly toasted bagels I had promised from Skip’s. Her favorite is a simple toasted and buttered sesame seed bagel, while I always got some sweetened-cream-cheese-slathered monstrosity encrusted with crunchy cinnamon or something similar.   As she savors the fresh-baked smell of breakfast, I reach into my front seat and hand her a small, 4″ potted miniature rose bush.

Now, Jacquelynn is NOT one for grand gestures. She much prefers a hand-drawn greeting card to $60 worth of flowers that’ll be in the trash bin in less than a week, and this humble little rose bush lit up her face like a hundred sunrises. She couldn’t wait to get it in the ground, and I ended up warming her bagel in the oven later that afternoon, as she absolutely had to plant her new roses in the lee of the large volcanic boulder in her front landscaping.

That little plant was apparently quite happy in its new home, as it flourished almost instantly.   Within a week, it had rebounded from the shock of planting and put forth a handful of bright late summer blooms before relaxing into its winter stasis.

In the ensuing years, every year saw it bloom bigger and brighter than we could ever have expected.   At its peak in (I think it was) 2014, it stood over 18″ tall. One afternoon that summer, despite my best intentions, I got bored and stopped counting at 300 blooms.

It was late that year that our beloved rose began to dwindle. The pear tree had contracted a blight that spring, and we thought that, just perhaps, the rose had as well.

But the next year was worse. It bloomed, but much less brightly and with far fewer flowers than it had in many years. By 2016, it was the merest shadow of itself, as the sage and succulents that had previously served to highlight it began to encroach upon its space. The bush’s once vibrant leaves were laced with holes from every but that could find it’s withered and drying frame.

2017, of course, brought much darkness and fear into our lives, and our tiny rose bush seemed to embody that; it produced neither leaf nor flower, and the remaining branches were dry as beached driftwood. You had to dig through sage and phlox to see even that, as the once-majestic mini rose appeared to have retreated into the shadow of the boulder which had protected it for so many winters.

Yesterday was Friday, 18th May 2018, and I spent the morning celebrating the fresh growth of flowers around our house. My beloved irises are in full form this year after a couple of still-productive-but-slightly-off years, and the flowering trees in the back are attracting hummingbirds almost in flocks. Even my gigantic apricot-colored rose bush in back has three strong-looking buds sucking water from the soil. I miss my failed dwarf lilac trees from a few years back, but that was entirely my fault. I’ll try again eventually.

I photographed all this and joyfully posted all of them on Facebook, Jacquelynn watching over my shoulder, ooh-ing and ahh-ing all the while. So when we set out on our late-morning walk, I was startled when she walked up to get a close look at the irises out front and gasped loudly.

I’ve become to recognize alarm from her, and I seldom expect good things when I hear it. so imagine my surprise when she beckoned to me and pointed at the boulder.

The lead photograph for this post is what she called out to show me. There, in all it’s glory, was our tiny warrior of a rose bush, pushing bright and brilliant new flowers into the world. Like a phoenix from the ashes, the dead had risen and shone it’s light upon our faces.

I believe in signs.   I believe without hesitation that God/Buddha/The Universe uses our every sense as its voice, if only we’re listening and willing to hear.

You may remember me writing about coming upon a certain song at the moment when I most needed to hear it.   These moments are not accidental and they are not to be ignored or dismissed.

In hindsight:

This little bush began to wither and suffer just as our approximate timetable tells us that illness began its vile work on Jacquelynn. At her darkest hour, for all appearances, it died. Just as her doctors were pretty adamant that she was doing. But she defied those expectations, and now her rose, the very first live flowers I ever gave her, has done the same. This morning, a third full bloom was added to its display, and the soil around it has cleared as the other plants seemingly make way for its triumphant return.

Our walk was glorious, of course. A beautiful morning spent hand-in-hand, chatting with neighbors doing their planting and basking in the sun and breeze. There was more bounce in Jacquelynn’s step as she smoothly stepped over and around buckled cracks in the sidewalk which would normally be cause for greatly elevated caution. She danced lightly around the goose poop that I would typically have to warn her to avoid. She smiled and waived and “How are You”d her way joyfully around the neighborhood like she had never been sick a day in her life.

 

Yeah, it’s going to be an awesome year.

Low Ebb

It’s a feeling that I won’t deny. Yes, some days I feel totally spent and unable to cope. Of course, it’s often on these days that Jacquelynn feels much the same (because like attracts and creates like!). This creates a spiral descent, a Coriolis-effect flushing of all hope for the day right down the cosmic shitter.

 

As terrific a day as yesterday was, today seems destined for the sewage treatment plant.

 

Honestly, I don’t know how much longer I can be “The Strong One”. We’ve had difficulties recently (one reason for my silence here), but I’ve found my strength every time and even come to the realization that many of them were inarguably my fault. My insecurities and fears and, yes, bitterness, have surfaced many times, making already tense situations SO much worse and driving Jacquelynn more than once into tears and worse.

So, I’ve found ways to face those fears and insecurities head-on and come to grips with them. I have, through meditation, prayer, and many hours of self-talk faced many demons these past few weeks. I feel as if I’ve quelled most of them, too.

But I’m still so fucking tired.

How many more days can I tell her six times that it’s time for her pills and endure her sagging shoulders and choked-back tears. She’s tired too, you know. As hard as I’m working to help, all the real work is on her shoulders, and they aren’t particularly broad or robust shoulders these days. So there are days and weeks in which she just feels so defeated and tired of the endless work, and I certainly can’t blame her for that.

She needs me, and I need her, but I’m still SO fucking tired.

Not sleepy. I get halfway decent sleep probably about half the time, so this isn’t that kind of tired. It’s the spirit-tired of looking at plans you had and knowing they’re gone forever. That day trip to visit my family and friends in Indy, or my much-loved forays up to Lexington Ohio in July for Vintage Motorcycle Days. The bucket-list items like riding Route 66 coast-to-coast and to Alaska to see the Aurora.

Those things aren’t going to happen. Don’t mistake me: Ten minutes with Jacquelynn is more important to me than all of that combined, but that doesn’t fill the hole left by accepting their loss.

She too is feeling a similar loss. At times, I’ll catch her sobbing and she’ll explain how she misses working and that leads to the feeling that she’ll never work again. Knowing that she’s going to be on this program for the remainder of her life often makes her feel like it’s all a great waste of effort until I remind her how very far she’s come. The reminder that without this great effort, she’d most likely be institutionalized by now and not have even the slightest clue who I am, let alone be essentially destitute as well sometimes helps ground her then.

The same thought also helps ground me, too. I’m always cognizant of it, obviously, but there are occasions when all the progress seems for naught, or even to disappear entirely for several moments, and those times inevitably terrify me. So, I review my notes, or I talk to her or just hold her for a while, and I spend some short while in simple gratitude for today, for this single minute with her in my arms.

There are low ebb days.   It’s probably inescapable that there will be. Days like today when Jacquelynn can pick up so easily on my mood and despair that she comes to me on the verge of tears and says, “You just look so sad…” and I can’t do anything but agree and apologize. I just have to admit to her that I am just so, so fucking tired. And I’ll agree to her suggestion that we take a nap. And while she dozes, I’ll quietly type away…

 

 

The Dread Of Independence

I had another article planned for today. I had started it last week and, to my shame, never got back to it. But that’s okay; it’s been said that life is what happens when you’re making other plans.

So, rather than the planned rejoicing about Jacquelynn’s improved memories and even recalling things which had previously totally escaped her (SS# and birthday, anyone?!), we’re going to talk a bit about facing a new challenge for which I have clearly not prepared her well. Yes, our savings have been pretty well depleted and despite our efforts to put it off, I am going to have to go back to work, and quite soon.

So, when I finish writing this, I’m going to brush up my resume, write a fresh cover letter, and get busy.

But I refuse to be morose or play the victim here. As you’ve all heard (read?) me say many times over, I fully believe that life happens for us, not to us. This, too, will serve to assist and perhaps even expedite Jacquelynn’s recovery in some way, and I may even have a decent grasp on how:

To begin with, a confession: I have control issues. While I truly believe that this propensity has served us very well in staying on track and keeping Jacquelynn on the path to what will eventually be her full recovery, it may very well also have served her ill in some ways. In enforcing a fairly rigid schedule of meals, meds, and supplement-fortified smoothies, I’m fairly certain that I have stunted, to some degree at least, her return to any level of independence.

My reasons for feeling this way are manifold, but I’ll share just a couple here. In many ways, Jacquelynn is sharper and more capable around the house than she was before I left work to stay home and care for her full-time. Her conversational skills are sharper; she’s more nimble and ambulatory around the house, even picking up and doing a little light cleaning; and she’s ever eager to do and contribute more. But I haven’t pushed her to learn how to dress herself again, and I still put each individual pill into her mouth as she takes her meds, coaching her through each swallow. She needs my help to change the channel on the TV (admittedly, the remote is VERY busy and confusing) and mine is the only number she has the confidence to dial on her cell phone.

My returning to work will serve to force some of these issues to the forefront, and while she won’t like it at all, she will, by necessity, begin to reclaim some of her independence.  I honestly expect that, after a few weeks, she’ll even begin to enjoy it a bit.

I’m not looking forward to this, and not for the reasons some may suspect. It’s going to be extremely traumatic for her at first. Indeed, every conversation about it begins and ends with tears now. But I’m just as likely to be a wreck at first, as I adapt to trusting her on her own. Which is why I’m going to begin, at least, with a part-time job. Initially, I’ll work a few days each week and only a few hours on those days. We have dozens of retail stores within easy walking distance, and with my 2+ decades of retail experience, I’m certain I can get a job quickly, and even have plans regarding which I want to try first.

We are both immeasurably and eternally grateful to those of you who have contributed and shared our GoFundMe campaign, and the money raised will go precisely where I promised it would. It was an extremely long shot that such a campaign would raise enough to allow me to stay home longer, but it did provide some much-needed assistance, and we thank you from the bottoms of our hearts.

Next time, we’ll revisit the above-inferred instances of shockingly effective recall on Jacquelynn’s part. Until then, thank you all for keeping us in your thoughts and know that you remain in ours, as well.

Now, where to find my old resume files….

Better? Really? Hell, yes.

There are days, many days in fact, when I wonder if I have imagined Jacquelynn’s progress and improvement. Days when she struggles for her words so badly; when communicating even the most basic concept seems infuriatingly just beyond her reach; days that find her so dejected and defeated-seeming that I truly think it all may have been just the cruelest of wishful thinking.

Then there are the Miracle Days. These are the days on which I kick myself for ever allowing myself to doubt, for my own all-too-human weakness. It’s on these days when I can barely breathe between noting and relating to her the new, long-lost, exciting and watershed moments as she continually demonstrates, all unknowingly, cognition and brain function unseen for more than a year.

Yes, I get weak. I cry myself to a semblance of sleep or simply lie awake all night, too tired to read and too wracked with despair to close my eyes and invite the nightmares in again. But these nights are fewer and further between than used to be the case, and they get rarer as time flows on.

In complete candor, if I had imagined her progress and improvements, she’d be dead or institutionalized by now. But she is getting better.

She has better endurance on the exercise bicycle now than I do.   Granted, I pedal faster and with higher resistance levels, but she outlasts me every time. There are simple things, too; simple automatic, unthinking muscular-memory things which have quietly but sharply improved. For example, ever since her shoulder injury and subsequent physical therapy in 2016, Jacquelynn has had very limited flexibility in her right shoulder. So, I help her into her jackets which she wears constantly around the house (her weight is still quite low, and she gets chilled very easily). The normal procedure has always been as follows:

  • 1) guide her right arm into the sleeve
  • 2) from behind, reach in front of her and guide her left arm down from its constant position against her chest (as if huddled against the chill), and help if into the sleeve, and
  • 3) move around front to straighten the jacket and ask for a kiss.

As of about two weeks ago, one step has been eliminated; now, as I pull the jacket around her back, she’s already reaching back with her left arm, feeling around for the sleeve.

Maybe it sounds insignificant to you, but please trust me, it’s actually a pretty big deal.

Also a big deal is childhood memories reasserting themselves.   Jacquelynn has NEVER been a person to speak about her childhood. She has long claimed to remember essentially none of it, save for her versions of stories her parents told over the years. She has always been very closed off about it, leading me to suspect that there may have been some abuse or trauma hidden in her past.

Perhaps I was wrong, though. For recently, we’ll be watching a television show or just talking and something will strike her in a familiar way and she’ll relate to me an anecdote from her youth. Amazingly (to me, anyway), she’ll often do this with little or no difficulty in finding words or even names (typically the hardest part for her), too.

But with each memory of home and family also comes more hurt.  She is crushed by her mother’s unwillingness to be of any help whatsoever, and every time it comes up, the hurt and rage seem fit to tear her apart. As many times as I beg her just to drop it, I remind her that her mom’s path is her own and irrelevant to us, invariably something will remind her of it again soon, and it will begin anew.

Can you even imagine?   Could you ever just write off your own child? Regardless of the antipathy that has always existed between them, could you ever hear “your daughter has Alzheimer’s and needs your help” and refuse? Even if you had more money than you could ever need or spend?

I apologize. Not the time or place. But I’m leaving it here so you can see inside just that little bit deeper. So you can understand the hurt and shame that I feel when I post and repost our GoFundMe link.

It has been an odd and busy few weeks, and it looks to get odder and busier as I work to find a way to delay the need to return to work full-time and remain home where I’m needed.

 

Wish us luck, would you?

The Lights Are On and Someone’s DEFINITELY Home!

Earlier this week, I had what I will call (for want of a more flattering description) a meltdown.   It had been an excessively challenging couple of days, with Jacquelynn having almost zero energy and growing increasingly moody as her nighttime sleeplessness translated into daytime petulance. This was all made so much worse by the growing clarity that her mother, for all the money she’s sitting on, is completely unwilling to be of the slightest assistance in her only daughter’s recovery.

On this particular afternoon, it seemed that everything I said and did triggered Jacquelynn in some way, and she would be reduced to tears and frustration, feeling as though I was judging her or snapping at her. Once, she even thought I had cursed at her when it was actually myself I had been swearing at. One final, very minor (in hindsight) confrontation led her once more to tears and I kind of lost it. I fled the room and deposited myself on the exercise bike, all but tearing my hair out in my frustration, and 100% sick and tired of being me. Full to overflowing with self-loathing and seeing only blackness in my vision, it was Jacquelynn who once more came to my rescue with a simple, crystal clear and beautifully prescient observation: “You need to get back to the things that bring you peace,” she said. “Listen to Dr. Dyer again.   Re-read that first book.”

It is an indescribably wonderful feeling indeed when I notice and am able to relate to Jacquelynn new and notable improvements n her cognition, but it is an even more magical and brilliant sensation when she notes them herself. This was the first such moment of several this week.

She was, of course, absolutely right. I knew it the moment she said it, too. Since Jacquelynn first gifted me with Dr. Dyer’s “Wishes Fulfilled” collection (book, 7 audio CDs, and 3 DVDs) in 2013, the (now late) Doctor has been a true guru and mentor to me, and his words and voice bring me peace and restore me to myself.   It has had precisely that effect, too.   I’m progressing through the book for (at least) the fifth time, and the countless YouTube videos, which she and I are watching together, are a truly transcendent experience for me.

Even more than that, though, was the absolute clarity and precision with which the thought was formulated and translated into speech for her. She not only recalled and cherished his impact on me but also remembered and spoke his name without struggle or hesitation. If you only understood how special and unexpected such a moment was, you’d be tearing up just as I am now recalling it. Then to see the light come on behind her eyes as she tilted her head toward me, a smile growing on her lips as she realized what she had just accomplished…

“I did that all on my own.”

This time, our tears were joyous and free-flowing.

Another similar though far less traumatic instance of clarity and recall occurred this morning…

There rests atop our refrigerator a gorgeous birch-bark basket (the photo above this article). A product of her impeccable decorating taste, she’s had it far longer than she has had me, and it’s been sitting right there for years.   Today she looked up at it and said, “I’ve always loved that piece. I wonder what’s inside it?” So, of course, I reached up and brought it down to eye level for her. There wasn’t much in it, as it turns out, save a few hair clips, an emery board or three, and an old greeting card. I picked the card up and read the front to her.   Halfway through my reading, though, she giggled and said softly “I LOVE this one”, already recalling and anticipating the punch line inside. She was actively laughing by the time I got to the inner page and read it for myself.   Yes, it was very funny. Far more significant, of course, was her clear memory of the card and its contents. She realized this just as I was about to mention it, and again her face lit up: “I did it again!”

As recently as a few weeks ago, let alone several months back, this level of casual recall would have been impossible.

Yes, my friends, the lights are coming on, one by one, the thousands upon thousands of rooms in the vast mansion of Jacquelynn’s mind are lighting up and doors are creaking open.

 

 

 

 

 

 

Hero, a poem

I felt inspired to compose a bit of poetry this evening.  I posted it on Facebook, and I wanted to share it here as well.  Thank you for reading.

Hero

 

Faced with necessity, I walked toward destiny.

Embracing need, I fled convention.

Into uncertainty, into fear,

I tread unknown paths on determined heels.

The courage is not mine, the strength I hope only to augment

Is Hers.

 

Her breath is my drive, her light my sunrise.

The power of her determination moves me,

Moves Worlds.

Moves History.

Changes all it touches.

Saves.

 

Facing today, we see only tomorrow.

Embracing Now, we pursue purity.

Into certain success, past fear,

We walk our path with faith and trust.

Her heart, my hands, our strength propels us

Forward.

 

Heart-guided.