Terror, Cowardice, and A Look Back

The single most difficult thing I’ve ever done was confronting Jacquelynn about her obviously reduced cognitive function.

It was so difficult, in fact, that I put it off far longer than I should have. The coward ruled me in every way when it came to facing this with her. I had confided in one close friend (you know who you are) early on about my concerns but continued to gloss over the facts even to myself. As you can expect, I wanted so badly to believe that it was all either inconsequential or completely in my imagination that I would grasp any thought that I could to deny what had become objectively quite clear.

The camel’s back began to break in the summer of 2016 when I had to take her to the doctor for what we would learn was a case of frozen shoulder.   Her marked difficulty understanding/obeying the doctor’s instructions (raise your arm in front of you; move your arm to the two- o’clock position, etc…) caused him some concern, which I glossed over yet again, but I couldn’t wipe it from my mind this time.  I can still see the frighteningly blank expression on her face as she stared forward, oblivious to what he was aking her to do.

At this same time, my mother was having a lot of health problems and had to be rushed to the hospital a number of times. She lived with my sister then (Mom has since passed) about 2-3 hours away, and of course, whenever she was taken to the hospital, I went out immediately. I was still working full time and there was as yet no perceived risk leaving Jacquelynn home alone for a day or two if necessary.

It was on one of these trips that my fears were escalated to the breaking point. Jacquelynn had an appointment to make a telephone call for personal business while I was on the way home from visiting my sister and Mom. As the number wasn’t programmed into her phone, she would have to dial it, and she called me, frantic and in tears over how to dial the dashes in the telephone number.

That was my last drive more than 15 miles from home without her. I could no longer deny the problem. She clearly could not function fully on her own.   The next day, I called her doctor and laid it all out for him. I’d begun noticing small things nearly a year earlier but kept hoping that it would improve, but clearly, it was getting worse. He immediately made an appointment for the next week (she was already scheduled for a checkup on the frozen shoulder) for a cognitive assessment.   This is where my extreme cowardice kicked in: I knew she’d never agree to this testing; whenever I’d raised the subject, her response was anger that she never gets out and never talks to anyone. She’s fine in social situations, she’d argue, she’s just rusty.   So the doctor agreed to take the initiative and “ambush” her with the testing. I was terrified; I knew how horrible an idea that was, but I couldn’t think of another path.

I was right. It was an absolute fiasco. She was furious at the doctor and at me, and of course, blamed her horrible performance on the test on us and on the stress and anger over being ambushed. It was hours before she could even bring herself to speak to me again, and days before such conversation was more than just barely civil.   Her trust had been betrayed, and she didn’t know if it would ever return.

And I didn’t know if I deserved for it to.

A week or so afterward, a peace was struck in the house. It was tenuous at first, and I was a barely willing participant, as it swung on absolutely not mentioning that day or attempting to further pursue medical input on the subject. The thought terrified me, as it was obvious to me that she’d most likely only get worse. But here again the coward reared his head; placate her or lose her was driven home as a very real choice, and I made the safe call.

Jacquelynn had stopped driving altogether by now.  In hindsight, I’m fairly confident that it was a conscious decision (though I wouldn’t have thought so then), only leaving the house with me or on very rare occasions going shopping with our neighbor. She had shut herself off from her few other friends from recent jobs, and was, deliberately or otherwise, cutting herself off completely. I hadn’t really even noticed, to be frank. Of course, I was still working between 47 and 65 hours each week, so my awareness (and maybe my willingness to see?) was blunted. Now, however, I expect that she knew, on some level at least, what was happening to her and was intentionally isolating herself so no one would see it.

Thus it continued until last February (2017). On Friday the tenth, I took her to the Urgent Care clinic for a kidney infection. Now, she has a broad history of kidney issues and had, just the previous February, emergency surgery for kidney stones. I know the symptoms in her by now and recognized them clearly. So, after their cursory tests, the clinic prescribed her an antibiotic and sent us home. Come Tuesday, Valentine’s Day, she was neither markedly better nor worse when I went to work for my 12-hour scheduled shift, but when I came home at 9:30, it was horribly obvious that I should never have gone.

Four surgeries, two frantic trips to the ER, and one odds-defying survival later, it was the third week of March. After her second hospital stay lasted nearly a week, Jacquelynn was understandably anxious to get home. She was physically depleted to the brink of absolute exhaustion but would recover her physical strength fairly quickly.

The day after returning home, Jacquelynn had her first of what the doctors called “psychotic episodes”. She awoke from a nap and recognized neither me nor her surroundings and would see people that weren’t there. While I was terrified, I managed to stay present and relatively calm and was able to “wake her up” from the first two such events.

The third was a different story and resulted in another trip to the hospital after I had had to physically restrain her from running away.  Amazing how much strength she had recovered in just two days. This trip was in an ambulance, though, because she didn’t know who the hell I was. She knew who Matthew was, but didn’t believe that I was he, and in fact, came to believe I was keeping her prisoner.  At the hospital, she came around and started calling for me, and that’s when I went in. I certainly didn’t want my presence to make her more scared than she already was. That same reasoning sent me home that night, not wanting to send her into another episode.   When the nurse called me at 11 p.m. with Jacquelynn screaming my name in the background, it was clear I’d made the wrong choice. Again.

Of course, all these events forced Jacquelynn to face the facts of her medical condition and resulted in her eventual diagnosis of Acute Early Onset Alzheimer’s Dementia. That’s where this blog and this mission to both find the way to health for my beloved Jacquelynn and to expose as many other people as possible to that possibility, began.


Our quest continues.

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