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?”