Compliments

With her pain and agitation increasing, the hospice staff and I have coordinated with the lead nurse on the Memory Care ward to move Jacquelynn’s comfort meds from strictly PRN to a regular thrice-daily schedule with PRN intervention.  This also solves the night shift’s propensity to just close her door and let her moan and shout, paying her no more heed than to occasionally look in to make certain she hasn’t fallen from her bed again.  So, she’ll be getting her roxanol and ativan at 6:00 a.m., 2:00 p.m., and 10:00 p.m. moving forward.  Knowing that, once medicated, Jacquelynn will simply sleep through whatever disturbances come her way, I’ve rearranged my visiting schedule to attempt to catch her at the very end of her medication cycle, hoping to rouse her enough to at least eat a little.  Thus far, my success has been nonexistent; she’s only been able/willing to eat a couple spoonsful of yogurt and drink perhaps an ounce of juice in the last two days.  My hopes are that as her body adjusts to the new cycle, she’ll wake long enough to eat a little at least once daily.  I am prepared for the “if not” scenario, having long ago decided that keeping her comfortable was, at this point, more important than keeping her here longer than she wishes to stay.

Adjusting my schedule to fit her needs is nothing new, of course, and it always seems to meet with some level of shock and amazement among the staff.

It’s become quite common as new aides and nurses come on board; last night as I was explaining my new schedule to the two aides, both quite young and new within the last few weeks, on Jacquelynn’s unit tonight, one stops me with her uber-important input:

“You’re a great man. I just have to say it, but you’re a great man.”

I’m not sharing this to pat myself on the back. Honestly, I wish they’d stop saying this and things like it. I understand it, of course, their need to comment on what they see as an unusual dedication and love. So few people here get visitors at all, and only one other receives anywhere near the attention Jacquelynn does, from her daughter who is here at least as often as I, and she also is now under hospice care as her condition deepens and her prognosis fades.

For my part, I simply cannot conceive of doing any less, and still often feel as though I don’t do nearly enough. Much though I understand the need to live my life, especially as I can now finally search for work once more, I still harbor a great deal of guilt for every hour not spent at Jacquelynn’s side.

At the same time, making myself come here is getting harder every day.  Not because she doesn’t really know me anymore, and not because I know how very limited her remaining time is, rather simply because I can no longer see her as she was, full and vital and bursting with the love of life in all its forms.  All I can see now is less than 80 lbs of skin and bone, sleeping open-mouthed in her adjustable bed, her arms rising and falling as though reaching for some unseen savior, left leg constantly moving, seeming to try to lever her frail form from the bed to follow it.  Sometimes I feel that I can hardly bear that sight for one more moment.  Then I pack another hopeful bag of yogurt, pudding, and juice, strap the dog into his seatbelt harness, and get back in the car again.

So I’m no hero and no paragon to be upheld and emulated. I’m a flawed man still desperately in love and terrified to miss a moment with my wife. Even though she no longer recognizes me.

My single greatest fear is THAT telephone call. I don’t want to receive that call. I want to be right here with her hand in mine when she lets go. Because if I have to drive here knowing she’s gone, I won’t be able to see or hear for the bawling. I’ll be a basket case and the (groundless, I know, but I can’t help it) guilt for not being at her side will be destroying me the whole time.

Fear and guilt and paranoia are nothing to hold up as some great example. They are, however, quite easy to mask as something far nobler.  Forgive me for hiding behind that illusion, but it’s one of the things I rely on to keep me going day-to-day.

Down twenty-nine pounds in six weeks.

Seventy-nine pounds.

One hundred eight in late October, and today just seventy-nine.

Down twenty-nine pounds in six weeks.

Sky and I spent the whole day with Jacquelynn on Thanksgiving. Ten hours, broken only by taking the pooch for a couple of walks and running to the gas station for snacks. Jacquelynn slept almost the entire time, but she knew me and smiled as she ate what little she was able to.

But I wasn’t going to miss spending our last Thanksgiving together, just as I won’t miss Christmas if she’s still here for it.

Which seems unlikely.

Down twenty-nine pounds in six weeks.

While there is still familiarity and comfort in my company, I don’t believe she has really recognized me since Saturday, although there is still familiarity, as though I was an aide or nurse she was comfortable with, but no bright light and smile of recognition. No kisses or strained, barely understandable “I love you”s.  Nutritionally, Jacquelynn is only averaging a single serving of yogurt each day, plus whatever juice she’s willing to drink and the pudding they mix her meds with.

I’m no Ferrigno, but I can lift her easily when I need to move her in her bed, so I asked that she be weighed (which happens the first week of each month anyway), and the nurse called me today as I had asked to tell me she was down to seventy-nine pounds.

Down twenty-nine pounds in six weeks.

Selfish as it seems to me, I’m struggling mightily this week with impending loss. My family and friends all remind me that there is no way to truly be ready for this; that all the preparation in the world can’t prevent the event from crippling you when it occurs. The only thing to do is allow myself to be human and feel what demands to be felt, to flex like the palm trees in the face of the hurricane, bending so as not to break.

I can only hope to avoid the break; to be stronger than I feel, because to be honest, I feel as though I’m already broken. Like I’ve been broken so many times and glued back together so many times that the crumbling just can’t be stopped anymore.

The pieces are just waiting to fall apart one last time.

But I’ll pick them up again, and with some help, put them together in the right order. It barely seems possible now, but I know I will. Life isn’t done with me quite yet.

Even if it is just about done with Jacquelynn.

Down twenty-nine pounds in six weeks.

Sky Knows

I thought, for just a moment, that this morning’s goodbye was the last one.

Jacquelynn was up in her wheelchair when I arrived, sitting up straighter than I’d seen in a while, and she greeted Sky and me with a smile. However, her energy and cheer wouldn’t last long. Though she had barely eaten since yesterday’s breakfast, she would take only a small serving of yogurt and a little pudding before losing interest in food at all. The ten or so ounces of cranberry juice I was able to coax her to drink was of little comfort, knowing that she’s shown signs of dehydration since her hip surgery just over two weeks ago.
As she tires, Jacquelynn slumps in her wheelchair, and she isn’t able to hold her head erect for long. This gets uncomfortable very quickly, slouching in the chair with her head lolling to the side, and she was quickly making a lot of pained vocalizations. As the nurse and aides are busy serving breakfast, I decided to help her back into bed myself. I’ve done this many times, and frankly do so with more efficiency and compassion than many of the professionals there, so she’s soon laying down without further discomfort.
Within minutes she was snoring peacefully.
As is my habit when she’s sleeping, I spent some time just kneeling by her bed, holding her always-gently-twitching hand and speaking quietly to her. Sometimes I’ll sing along with the music playing from the I Heart Radio station I created with some of her favorites. I know most of them by heart now. Today, I just held her hand and stroked her head while her soft snores serenaded me. I whispered to her that I love her, and so does Sky. “It’s okay, My Love, everything is okay. We love you so much…”
The twitching in her hand calmed and stopped at the same moment that her snoring silenced. I slowly rested my forehead on her chest. After only a moment, a short snort was followed by another light snore and a solid push from her hand, and I exhaled, realizing I had been holding my breath.
I called Sky to me, and he hesitated, an uncharacteristic response, especially where Jacquelynn is concerned. I patted the floor next to me, and he peeked around the foot of the bed, looking unwilling to come any closer. When he finally approached me, he kept his distance from the edge of the bed. Looking first at her then at me, he started whimpering, only stopping when I let him move away from the bed.

I said my goodbyes, as I do every visit now, and we left shortly after that.  In another unusual move, Sky left the room eagerly where usually I have to drag him out. His attitude and body language didn’t settle until he was in the car. Even now, almost four hours later, he will occasionally cry gently, calming when I hold him close. He’s not normally a cuddler, but I’m not going to complain; I could use the comforting myself.

Stubbornness and Consequences

As of Monday afternoon, despite a loudly growling stomach causing her clear discomfort, Jacquelynn hadn’t consented to eat a single bite. If I put a spoon with a touch of pudding in her mouth, she’d take it, mash it around for a moment, then spit it out. Even just moistening her parched lips and mouth with the flavored swabs, successful while she was sleeping, resulted in choking and spitting if she was even partially awake.

Thirty-six hours after the surgery, she would typically be expected to be eating by now. The attending physician gently warned me to be prepared for the idea that she may not choose to eat, asking if I had considered or planned for that possibility. I have, of course, long since; her DNR order is on file at both the hospital and the nursing facility which is her permanent home.

I had even given thought to the idea of not authorizing the surgery while consulting with the orthopedist. The surgeon acknowledged that, in all likelihood, her time is fairly close now, and if she were not to have the surgery, she would be bed-bound going forward, under which circumstances, most patients in Jacquelynn’s condition simply don’t last very long.

Understand that she and I had many conversations about this over the years; the idea of living helplessly, of being a “burden”, and of course of being kept alive when true life was long over. This idea was abhorrent to her, as it is to me. Then I recall how many times before she went to the nursing home when, in those terrifying lucid moments when the enormity of what has happened comes crashing down upon her, that she asked, begged, and even demanded that I kill her. I had promised, she would insist, crying and clearly feeling deeply betrayed. I couldn’t, of course, and never could, but for those few moments of clarity, all she wanted was to die before losing more of herself to this horrific disease.

So it was with a certain difficulty that I reached the conclusion that God will take her in God’s time, and my job here was to help her feel as safe and comfortable and loved as possible up till that time, and I authorized the partial hip-replacement surgery.

Yes, she broke her hip. Refusing as was her habit this last month or two to go to bed, she was still in her wheelchair after 10 p.m. last Friday (10/11/19), and either out of boredom or just her typical stubbornness, she decided (as she often does) that she would get up and go for a walk.

Now, she can and often does walk a few steps on her own, but she hasn’t the strength for more than that, and her balance is certainly not reliable enough for this to be a safe practice (see the comment about stubbornness above). So, the staff keeps as close an eye on her as they can, but there are more than twenty residents in the ward, and one-on-one monitoring just isn’t possible. Still, the nurse saw and started toward her but simply didn’t get there in time. She related to me watching her waver and fall, full-on her right leg, and instantly begin screaming.

After making the questionable decision to help her back up into her chair (picking her up increased the possibility of injuring her further), I was called immediately. Hearing her screaming in the background was enough for me, and I was dressed before the nurse even finished explaining to me what had happened. Upon arriving, I found her in her chair and in obvious agony, either unable or unwilling to move her right leg at all. After a short argument with the ambulance crew about where to take her, I took off in my car for our hospital of choice. I knew she was badly injured and had broken something (probably the hip but perhaps or also the leg), and was going to be hospitalized for some time, and by God, it was going to be where I knew the staff and where her records are immediately available.

Unsurprisingly, the always-efficient and effective ER staff found that she also had another severe bladder infection, which would delay her surgery by a day as they doubled up on antibiotics in an attempt to minimize the possibility of any infection contaminating the surgery wound. After two nights in the hospital, surgery was finally done Sunday morning, and she would hover in the limbo between sleep and pain, squirming in the bed in an attempt to edge away from the ice pack which is so essential in the first couple of days post-surgery. She would grunt and whine and ask in a weak, quavering voice “Why?”. I’m uncertain as to whether she actually recognized me at all in our few interactions those first two days, and her apparent refusal to eat had me anticipating the worst.

But Tuesday morning would be better, with Jacquelynn clearly recognizing me with smiles and even a couple of “I love you”s, and she even ate some yogurt and drank a few swallows of laxative-laced juice.
Although I personally didn’t think she was ready, Tuesday was also the day she would be discharged and sent back to the nursing home. Fortunately, the staff on duty when she got there were a group I have a good feeling of trust in, and the next shift as well. We arrived just as dinner was being served, so I helped her eat a “magic cup” (frozen ice cream-like supplement), which she wolfed down and eagerly chased with an apple juice before falling fast asleep.
Wednesday was mostly sleep for her; she was out like a light at both mealtimes and I let her rest rather than waking her. I knew the staff on duty and trusted them to feed her when she woke, which they did. Thursday morning was a real thrill for me, though. When I arrived, she was laying in bed talking to herself when I walked in with Sky. The instant I put myself in her line of sight, her face lit up with a huge smile and a “Hiii!!!!” She kissed me and told me she loved me in her very-dry-mouth voice, then made all kissy-face when Sky bathed her in doggy kisses. She ate a (comparatively) vigorous breakfast of yogurt, juice, and jello. Dinner was an even fuller meal, and she finally began asking what had happened. Although I knew she wouldn’t retain it, I explained briefly how she got hurt and why caution is so vital moving forward. I’ll remind her of this many times over the next week or so.

Friday was another pleasant surprise when I arrived for breakfast; she was sitting up in her wheelchair! She seemed quite comfortable and Sky and I both got another enthusiastic greeting, and she positively attacked her breakfast, eating everything she would normally have (there was a banana and a pair of sweet rolls on her tray which she just doesn’t ever enjoy). They were putting her back to bed as I left, as she was clearly getting quite tired and uncomfortable already, and there’s no point in pushing too far, too fast. She would still be in bed when I arrived for dinner, but was alert and enjoyed a bit of yogurt and pudding with a full bottle of cranberry juice before falling right back to sleep.

I’m fully cognizant of the likelihood that, after four full days under heavy sedation and pain meds, it’s probable that Jacquelynn will lose some baseline, meaning that she may not be fully the same level of herself as before her injury. It has happened before, and the docs told me to expect it. There are signs of this already, but some of it may be the meds she’s still on. For my part, I’ll take whatever there is of her and love her with all that I have. But I’m aware of the limits on our remaining time, hovering over my head like Damocles’ sword. I feel a pressing need to maximize every moment, but still honor her need for rest and recuperation. Sky even gets a tad impatient with me as I prolong our stays while she sleeps.

 

The lovely lady whose room adjoined Jacquelynn’s via a Jack-and-Jill restroom passed away over the weekend. She was a wonderful pianist and could play any old standard or hymn from memory on request. She was also a sweetheart who loved complimenting Sky and how much he and Jacquelynn love one another. She seemed quite robust and I saw no outward indication that her time may be near.

There is simply no predicting the when with this disease, only the inevitability of it.

I’m as ready as I can be. I know I’ll still be an absolute wreck when it happens, which is why I’m endeavoring to make as many arrangements as possible now, so I can afford to crawl under my bed covers and shake for a few days when the time comes. I waver between praying it never will and praying for a hastened end to her suffering.
All in its proper time. That’s how it’s going to work out anyway, so fretting over it is a waste of energy. Energy I hardly have available to waste.

The Lament

The quiet Why couldn’t it have been me?” isn’t the guilt-ridden Matthew-torturing-himself lament it once was, but a sincere question to the cosmos.

It’s taken a very long time, but I’ve moved beyond the guilt and anger to finally accept that this was Jacquelynn’s agenda all along, and mine as well; to serve and learn and be forged into whatever I need to be going forward.

No, this time it was a legitimate question, muttered into her shoulder at 1:30 in the morning, as she calms from the tantrum that always accompanies getting cleaned and changed. Imagine that feeling; you’re an accomplished professional, highly respected in your field, and strange people are pawing at you, laying you down on a bed and rolling you around, doing to you what mommies do to their infants, and you just can’t understand why. You can’t stop them and ask what the hell they’re doing, caged uncomprehending as you are in a body and mind that no longer obey your commands or answer your requests. So you cry and scream and lash out because that’s all you can do.

So yes, I ask why it couldn’t have been me because I’d give anything in my world for this not to have been her. Not to have to hear her weep helplessly as the STNAs dodge her kicks and flailing, claws-bared arms, swearing as the one person I’ve ever known who has never intended harm to any other being connects with a vicious scratch.

I couldn’t wish this on anyone else, so “Why couldn’t it have been me?”

All Hands On Deck

You Matter, Too

In the time my wife has been in the nursing home, one glaring and tragic fact has continuously assailed my conscience, and I have decided to do something about it.
Of the approximately 20 residents in the same memory care ward as my wife, she is the ONLY one who gets daily visits. I’m there for breakfast every day, dinner at least five days each week, and very often in the middle of the night, just to check up on her. A select few of the other residents get the rare occasional visit from family or clergy, and one daughter who was visiting daily at dinnertime when Jacquelynn first arrived hasn’t been in at all in over a month now.
Most get none at all. Weeks and months (and years?) pass without a single human who doesn’t work for the facility paying them any heed whatsoever.
No one to sit and watch television with them. No one to share a meal. No one to simply show them that they matter at all. No one to just sit and hold their hand.

Not one soul to tell them “I love you”.

Everyone deserves to know that they matter, that they’re important to someone.
Thus the genesis of what I’m tentatively calling Project: You Matter, Too.
The concept here is to provide companionship and personal support to those many nursing-home-bound people who have no one else. So many have simply been “dumped” in these facilities either by uncaring or too-distant families, or simply have no one left to visit them, care about them, and to remind them that they truly matter. Everyone deserves to know that they are important to someone, that someone loves them.

This is more than having an occasional volunteer drop in on random residents and spending time with them; this is a commitment of time to spend with a particular human being who has no one else. To get to know them, have meals with them, watch television with them; simply and monumentally to befriend and care about them, and to ensure that they feel loved and appreciated. We will develop lasting relationships, touching hearts and brightening lives.
Training will be required in how to deal with dementia patients; how best to approach them and interact with them; what not to say is as important as what you do say, although each individual is as unique in their illness as they were in their health. Flexibility and intelligence are vital, but a loving and empathic heart is the most essential, invaluable tool of all. Volunteers will be paired with residents on a trial basis until they “hit it off” with someone, then they will be matched for longer-term interaction. Visits will ideally be several times weekly, and on a regular, predictable schedule as routine can be very important to some dementia and Alzheimer’s sufferers.
This will not require medical training, as volunteers will not accompany residents outside the environment of the facility but will rather visit them in their familiar surroundings, providing the closest thing many such people get to family. Rather than attempting to remind them of better days behind, we will be making their todays brighter and more meaningful.
We will be reminding them that they matter, too.

Everyone matters.

This is a call for help. I need the input of business people, of people familiar with non-profits and start-ups. I need the advice of health care professionals, especially those with experience in geriatrics and dementia. I desperately need legal advice. And I can’t pay a cent.
I need open hearts willing to share their expertise and experience to help these souls who have been set aside or forgotten by whatever family they may have. No one deserves to be put on a shelf and left behind.

Thank you in advance,

Matthew Jarrett

Date Night

The unit nurse knew we were going out, so she had prepared Jacquelynn with a nice top and (HUGE HELP) a leg bag for her catheter rather than making us go out with a big bag of urine hanging off the back of her wheelchair.

Jacquelynn had sort-of-forgotten but was very excited as soon as I reminded her what we were doing. She’s gotten pretty good at cooperating and helping with the wheelchair-to-car (and back) transitions and managed it smiling, still excited about the evening.
After some no-short-term-recall-related “bickering” about where to go, I drove us to the local Panera Bread, where she gleefully let me wheel her up to a table and sat smiling while I ordered dinner.
The simple “artisan” grilled cheese and chips made Jacquelynn SO happy as she absolutely savored every bite I fed her while she guzzled her way through 2 refills of peach-mango tea. She even enjoyed a sample of my tuna salad enough to smile broadly yet again.
We chatted as we ate, taking our time like lovers do on a date. But she was chilled in the heavy air conditioning of the restaurant and I hadn’t brought her wrap, so I bussed our table carefully and we made our way out. Unlike on the way in, someone actually jumped up to help with the door as I clumsily maneuvered her wheelchair backwards one-handed while trying to hold the doors myself. Thank you, kind lady.

Next stop, after yet another flawless chair-to-car move, was Cincinnati icon Graeter’s Ice Cream. With no wheelchair ramp at the front of the store, (I think there may be one toward the rear, but didn’t look), getting in was a bit more difficult, but it’s an aluminum chair and she weighs 90lbs, so pulling her up over the curb is not the greatest of burdens. Again, she was chilly in the shop, but we loitered over a couple dips of mint chocolate chip in a shared bowl. She grinned and giggled at a baby at a nearby table and lovingly savored her dessert. Leaving, we decided it was still pretty early, so we slid across the street and into a handicapped parking spot (no, I don’t have a placard yet, but the lot was almost empty and I was loading her into and out of a wheelchair) in front of Homegoods/Marshalls. Riding the elevator up and spending 30 minutes or so touring the store was a great capper to a truly fun evening. Jacquelynn was tiring and ready to return (but still cheery!), so we headed back.

Returning her to the unit and saying goodbye was typically difficult, as her mood tends to deteriorate as I leave, but she did thank me and tell me she loved me as she was spiraling down for the evening. But I had left the dog home alone for long enough, and I had to get home to let him out for a spell before bedtime.

All-in-all, a very successful and wonderful evening out together. Much to my surprise, she remarked on it at breakfast the next morning, too. She was still jubilant and smiling about the good time we had together as she ate, although most of the details had slipped away. It must have truly made an impact on her as it has been many months since she recalled anything pleasant from a previous day.

I would see precisely the same phenomenon two days later, when a late-afternoon appointment with our regular physician led to dinner at the new BBQ joint across the street from her office. The food was outstanding, and Jacquelynn asked for ice cream again afterward, so we stopped by Graeter’s again (they do have a ramp at the back entrance!) on the way back to share a bowl of Black Raspberry Chip. A less formal and more impromptu date night for sure, but again the next morning she was savoring the memories before they disappeared completely, even licking her lips as we discussed making the pulled pork and mac-and-cheese a semi-regular event. That’ll be quite easy to do, as they’re on my way to the nursing home; I’ll just preorder it and pick it up on the way in once every other week or so.

I feel that these dates are a second chance of sorts. We don’t have unlimited time before us like we did twenty years ago, but I can work to maximize what we do have and spend as much time as I can re-bonding with her and emphasizing the love, in ways I couldn’t while she was still at home. With less of a spectre of her hurting herself or me hanging over every moment, and others filling all the caregiver roles which so antagonize her, I can (as the nurse at the hospital told me almost two months ago) finally be the husband again, and my lovely wife seems eager to allow me to be.

For that, I am eternally grateful.

Dinners, Date Nights, and Grabbing Every Opportunity

Friday night dinners used to be a big deal for Jacquelynn and I. When she was on her last couple of jobs from maybe 2008-2012, I was selling cars and had Fridays off. So I made a fuss for her and there was almost always something special awaiting her when she arrived home.
From very technical Italian dishes to pan-seared pork loin to grilled mahi-mahi with a pineapple glaze, I often labored most of the day to surprise her. I usually also did an elaborate scratch dessert of some kind (her favorite may have been the key lime meringue cookies), too.

But once in a while, frequently on days when I either had to or chose to work a few hours that day, I’d meet her at home with a large, thin crust Donato’s double pepperoni pizza. The one they call “The 150” today, always with an ice-cold Mexican Coca-Cola*.
This treat always made her smile, and the act of kicking off her shoes and plopping down on the sofa for dinner was a catharsis all its own.

Today, I did my best to bring this experience back to her. I brought The 150 and 2 half-frozen glass bottles of real-sugar Coke to the nursing home with me and we had a blast. Keeping in mind that Jacquelynn hadn’t had a carbonated beverage of any sort for nearly two years, it was HILARIOUS watching her sip that sharp, tart pop, and she hammed it up royally, mimicking fireworks and hooting like a chimp when she drank. I haven’t laughed with her like that in longer than I can recall, and watching the joy split her face in such a huge smile truly warmed my soul.

But even as I smiled and laughed along with her and fed her bite after bite of Donato’s finest, I took mournful note of how her condition continues to deteriorate. She’s unable to hold herself up in a seated position now and always leans sharply to her right. Even when straightened up and leaned to the left, she’ll very shortly have her right shoulder buried into the arm of the wheelchair and her head listing so far to the right that it’s almost parallel to the floor. She was moving about gleefully and waving her arms a bit as she ate and sipped her Coke, but when she relaxed, she reminded me more of Stephen Hawking than my wife, slumped almost bonelessly into her chair. It’s affecting the way she gets around, too; she has considerable difficulty “pedaling” her chair down the hall, constantly pulling to the right like a car with a flat tire.  I’ve spoken to her nurse and she’s going to consult with Occupational Therapy to see if there’s any way to help her realign or to better support her in the chair. I did bring in one of her donut pillows to put inside the right arm of the wheelchair so as to provide her some level of support and prevent injuring her now very thin and bony arm.

For this reason and many more, we’re going to begin a regular “Date Night” starting next week. I’m going to load her in the car and take her out of there for an hour or two once a week; maybe get her an ice cream or a burger, or maybe just go tour the mall and get an Orange Julius. Who knows? But we’re going to spend some quality time together, and I’m going to remind her that she’s human and loved and NOT a prisoner in that place.

I don’t know how many such date nights we’re going to get, so I’m going to maximize our opportunities.

*The Coke imported from Mexico uses real sugar rather than corn syrup, and just tastes SO much better and sharper than the domestic version. It’s in glass bottles, too!

NOT Saving Jacquelynn

I haven’t posted here for a while, and there’s a reason for it.

The title of this page, “Saving Jacquelynn” was more than a title; it was an overriding goal. It was the sole focus of my existence; to bring her back from the brink of obliteration from the most terrifying and fastest-growing threat to the human mind.
But it was not to be.
I did not “Save Jacquelynn”. I no longer believe her path was one from which she could be “saved”, and I’m just now struggling to embrace the concept that this may not be my failure. It feels like my failure, though. When Sky (our rescue dog; more on him in a later post) and I visit her at the nursing home for breakfast and she only gets halfway through the meal before she flips her internal switch and starts shouting that she hates us and wants us to leave NOW, I know it isn’t really her…
…but it still feels like my failure.
Jacquelynn’s condition has plummeted dramatically since the beginning of the year, when I was so confident and so excited about the improvement and progress she was making. She struggles to speak at all, with only a tiny percentage of her utterances being actual words. She recognizes us most of the time, but often dismisses Sky, asking instead for her “pupup”. She may be looking for one of the dogs she so loved from her youth, as we’ve only had Sky for a few months.
In the six weeks she’s been in the home, she’s turned an initial (and very welcome) weight gain into another drastic loss, coming in under 90lbs now. The only things she’ll eat reliably are her yogurt and the “Magic Cup”, a supplement-laced ice-cream-like dessert. The initial issues with frequent falls have been mostly overcome with large bumper-like pillows on either side of her, tucked into the fitted sheets so she can’t kick them off. She has regained enough strength, however, to get most of the way out of the bed on her own again, so I’m hoping falls won’t become a problem again. She can almost stand on her own, and can, with support, walk a few short steps from her bed to the wheelchair. While any resurgence of vitality is wonderful, it also carries an elevated risk as she begins to decide to act on her own again, before her body is truly ready. Also, since she can “flip her switch” from pleasant to violent in an instant, any increase in mobility comes with a commensurate increase in likelihood she’ll try to leave there as she did here so many times.
But for now, as she faces yet another bladder infection and we make plans for a procedure which will hopefully help to limit the occurrence of such infections moving forward, for now, Sky and I visit for breakfast every day as I bring in her fresh laundry and take yesterday’s clothes home to wash. We also visit for dinner most days, unless I have afternoon commitments (doctor’s appointments for me, of Sky’s AKC classes, for instance). Some days are loving and fun, others (particularly during an infection) can be traumatic for all involved.
And we will continue to visit. I will advocate for her and oversee her care, holding the facility to the highest standard possible. I will eventually fully embrace, both intellectually and emotionally, the understanding that this whole vile mess isn’t in any way my fault. Meanwhile, I will cry myself to sleep and lose my composure at the slightest provocation. I will cower in loneliness and continue in my counseling as I pray and meditate each evening.

And I will take great comfort in Sky’s companionship.

Intimacy In The Chaos

She smiles gently as I hold her hand, trying to control her involuntary muscle spasms (twitches) as I tenderly clean under her nails. I’ve brought her manicure kit to the nursing home and with it a quiet, intimate act we share every ten days or so; I clean, trim, file, and buff her nails while she slowly relaxes and eventually dozes off, enveloped in an aura of calm and trust. I treasure these moments, and will never voluntarily surrender them.

She’s been here a little over a week now, and I’m grateful for it as I can be, but at the same time, I detest it. This is not her final destination; I have already begun the process of moving her to a markedly more modern facility which also happens to be much closer to home. But she’s safer here than at home, especially as she cannot as yet walk. Bedridden and all but catatonic for 5 days, her already weak legs had atrophied even as her cognitive baseline receded, and she needs considerable therapy to regain her ability to walk. Given her difficulty understanding and executing basic instructions, I’m told to be prepared for the possibility that she may not walk again.

But she’s gaining a little weight, and, when she’s in a good mindset, she can be the absolute light of the ward, greeting everyone she sees with a lovely “Good morning”, Don’t you look pretty today?”, or “I love your shoes.” This is the Jacquelynn I fell in love with two decades ago, always much more concerned with others than with herself.
Sky gets to visit with me, thank Heaven. Her beloved “Puppup” misses her greatly, and pulls me like a freight train until he gets to her, where, after about 30 seconds of wiggle-butt energy shedding, he settles into his role as her guardian, sitting or laying next to her wheelchair or bed, seemingly sleeping but roused to her defense at the slightest sound or movement. I’m entirely unsure whether it’s the sight of me or the dog that lights her face up so brightly when we arrive, and frankly, I don’t care. The joy on her face is palpable, and she is impatient for her hugs and kisses, from us both.

It’s not an ideal place, and I don’t believe there is anyplace in the world “good enough” for her, but she’s cared for and fed, and the process is underway to move her to a place I have a great deal of confidence in. I weep daily for missing her, and for so many other reasons, too. But this is our new paradigm, and I have to focus on what is truly best for her. I probably should have done this six months or so ago, but what’s important is where we are right now.

With her nails rounded and buffed to a soft shine, I pull her light sheet up over her hands and let her nap, settling into the chair next to her bed after a soft kiss to her forehead. Sky and I will take our leave soon, so as to beat the rush hour home, but for now, we’re just going to sit here listening to her light snoring.