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.

The Emptiness At The Top Of The Stairs

Bedtime. I HATE this.

I’d normally have been asleep at least an hour ago, but I’ve been putting it off much longer than I should. It is just so difficult to even think about going up there without her.

You know, although we had lived together for fifteen years at that point, it wasn’t until Jacquelynn got really ill and became afraid to sleep alone (afraid to awaken alone, more accurately) that we finally began sharing a room. We had kept very different schedules with me rising at 4 a.m. to get in as much artwork as possible prior to leaving for work, then trying very hard to sleep in a bit on days off. So it seems odd to me that after only a couple of years of actually sleeping together, the prospect of coming upstairs to go to bed when she’s not here fills me with dread. Even when she’s been hospitalized for a few days, I’ve always just slept downstairs in the recliner, but there’s no real rest to be had there. I need a bed, and this is the only mattress less than 20 years old in the house.

But it’s also haunted. Haunted with emptiness. There’s a dog lying there now, and unlike just a week ago, he won’t get up and move to several spots on the floor before reclaiming his bed spot then jumping down to get a drink only to fall asleep on the laundry pile. No, he’ll sleep in the spot that smells like Jacquelynn, shifting his position only once or twice all night. And I’ll wake up suddenly half-a-dozen times overnight, thinking I hear her voice or I’ve felt her get up. There is a hole in the bed now; a hole in the room. A hole in our lives.

Her permanent status will hopefully get sorted this week. While she’s been in the hospital these last 8 days, I’ve been through an incredible roller-coaster ride with insurance cancelations and reimbursements, new policies and hospital savings programs. Medicaid approval went from maybe to all-but-assured to not-gonna-happen and full circle to a solid probably, all while I toured available memory care facilities. Those also caused their own terrifying ups-and-downs with options ranging from Stephen King-esque to home-towny and maybe-a-little-too-informal. But a selection was made, and if it all works out and that’s where she goes for now (I can always move her if either of us are unhappy with the choice. I’ll certainly keep looking and if I see something better and closer to home, I’ll get her on a waiting list right away) when the doctors are confident that her kidney and bladder function are reliably normalized.

It’s not going to get any easier, transitioning her into a care facility. There will inevitably be a period of anger and feeling of betrayal, but I’m constantly reassured that it will fade, especially as her recall weakens. And I’ll eventually be able to be the Husband once more, rather than the Caregiver.

I must admit, that is a very hopeful idea, and just now, hope is a wonderful thing.

Shit Continues To Roll Downhill

Jacquelynn is admitted to the hospital as I type this. After a (relatively) terrific Saturday, she could neither get nor stay settled today, and (yes, I’m leaving out a LOT of detail for now) she had a bit of a break. In short, she suddenly decided she was a little girl (I’ve kinda seen that part coming for a while; there are constant references to “a little girl” in her mumblings) and that I had stolen her from her home. We were in the car, so I took us home, and her mood and state of mind shifted constantly on the way, but when we entered the driveway, she didn’t recognize the house and thought I was going to force her inside and harm her. So, we stayed in the car while I called 911. Since she can’t reliably manipulate the door handles or the seat belt, I figured she was safest right there until the medics arrived. They know her by now (fourth or fifth visit for this reason), and had her on her way in no time.

Sky (the dog) was NOT happy to see her go. His last owner died in the home and I’m certain a lot of this was frighteningly familiar to him.

Officially, she has another relatively severe kidney infection, which is why she’s been admitted. The hope is that we can get a few other tests and evaluations taken care of while she’s there and that maybe I can manage one halfway decent night’s sleep. Not taking bets on either, honestly. While she was fairly calm with the medics, and apparently with the hospital stall as well, to begin with, she flipped her switch at some point while I was in conference with the caseworker and they had to sedate her. Last she said, she had no desire whatsoever to see me, so on the advice of the docs, I came home to rest and take care of Mr. Sky.
This is the beginning of the end for her living at home, though. All the people involved are shocked she seems so well-taken-care-of, given the time I’ve been essentially on my own at this, but they all also totally agree that she needs 24-hr professional care. I just need to complete the Medicaid process and get my guardianship petition approved.
Say a prayer or three for us, if you do that sort of thing. Otherwise, I’m grateful for every bright and loving thought you can send up.

Thank you.

Matthew

A New Level Of Peril

Jacquelynn has a dear friend in Washington. They met when Jacquelynn had traveled there on business, and formed a friendship that had maintained through Christmas cards and emails (mainly on the friend’s part) through nearly a decade.
Recently I located this friend online and reignited their acquaintance. They’ve spoken on the phone a couple of times and I’ve kept the friend informed as to Jacquelynn’s health and condition. She was even kind enough to extend an invitation, should Jacquelynn’s health improve to the point that she’s safe to travel.
That invitation was issued weeks ago, with vague talk of possibly visiting sometime in July. Yesterday, Jacquelynn decided out of the blue that she was going now. My assurances that, once her health had improved enough to travel safely, we would make the arrangements fell on deaf ears. She’s as healthy as ever now, and the only reason people think she’s sick is because I’ve been telling them so.
Which leads us to today; she’s currently furious, stalking about the house, muttering about how evil I am and insisting that she has “One one, one one one monies” to counter my insistence that we can’t afford to travel now.

For the first time in longer than I can recall, last night’s and this morning’s restroom trips were completely without incident. I knew it wouldn’t last, but this new manifestation has some frightening potential; her newfound desperation to escape could spell greatly heightened difficulty at home. She’s already done one thing this morning that hadn’t happened for ages by coming down the stairs all on her own; she’s been too terrified to even get close to the edge without assistance for many months. That, along with her inability to unlock doors, is the only thing that’s allowed me to relax even a little when she was cross about wanting out. I can’t afford to trust those limits now, so a greatly elevated level of awareness will be necessary going forward.

I cannot allow myself to forget that, behind all this, is a genius-level IQ wrapped in an incredibly devious container.

I’m afraid we may be at a new level of peril now.