My dad finally passed away early this morning, which, of course, causes that same “grielief” we felt when Mom’s time was up a mere six months ago.
His decline was so agonizingly slow, marked by such infinitesimal notches downward. Every time we thought he was making the step that would mark a turn to The End, he would level out, his body continuing to chug along. Time and again, even as his corporeal self withered and the person we suspected was still inside slowly disappeared, that body kept going.
Seven months ago, Tim and I made plans for a long, tropical vacation in early February. Because I was away when Mom passed (my sister left to manage in the immediate aftermath), she and I discussed this vacation after that experience, agreeing that there was No Way He Would Still Be Around By Then.
As the months slowly passed and it seemed that the ground itself might have to rise up to swallow what was left of him before he finally took his leave, I began saying, only slightly jokingly, that it would probably happen while Tim and I were even farther away. We joked about it. But, amazing, indescribably awesome sister that she is, she told me that we had her blessing to stay for the entire trip if it were to happen on her watch.
Lo and behold, here we are. She kept me apprised as he took what marked his final turn earlier this week, and through his exhausting descent over the past few days.
She and her husband are living angels, taking turns being with him, administering his comfort meds every other hour, 24 hours a day; singing to him, stroking his hair or holding his hand. Letting him know he was so loved; what an incredible father he was to two adopted daughters whose lives were so shaped by his quiet guidance and support.
As grueling as this past four years has been, I don’t think I’m speaking just from the emotion of this moment when I say it has also been the most meaningful four years of my life. It has brought my sister and me, who were fairly close before, so much closer. It has made me appreciate my life in ways I might never have, had I not been yanked out of my “normal” and tossed around in the swirling currents of parental dementia.
At a moment when I’m vacillating between grief and relief, between surprising upwellings of tears and smiling at the kindness of friends and family, the umbrella over all of it is my gratitude: to my dad for a list of things that will require a separate writing session, to my sister and her husband, whom I feel with every breath I’m drawing today, and to the Universe itself for putting us through this transformative disease.
Finding gratitude as my parents’ dementia marches on
Today just happens to be my birthday, which I’m not sharing to score birthday wishes, but rather to put a finer point on life as an adult child of parents with dementia.
My parents have not remembered/acknowledged my birthday (or my sister’s, or my sons’) for a few years now. This does not bother me in the slightest. Nor does it disturb my sister. It’s just par for the course – a simple fact of life.
I could choose to be sad or upset by that, but what’s the point? There isn’t a single thing I can do to change it, and if I were to point it out to them, all I would succeed in doing is to make them feel bad.
Life in two-week increments
My sister lives two states and four hours away. Now that mom’s dementia is advancing, we’ve decided that leaving them alone overnight, which we had been able to comfortably do until recently, is no longer safe.
We trade overnight stints, two weeks on, two weeks off. So every two weeks, my sister and her husband travel down to stay with my parents. When they head back home and it’s my turn, I leave my house at approximately 8:45 every night so I can check in with the caregiver before she leaves at 9:00.
Sometimes I stay up and watch some TV with mom; sometimes we’re both tired enough that we move straight to the nightly rituals of turning out lights, ensuring the doors are locked and the toaster is unplugged. (Don’t ask.)
I give dad his nighttime meds. I make sure mom gets to bed. I go upstairs. I read. I catch up on emails or social media; I fall asleep (on that new memory-foam mattress with cooling gel top!) with one ear tuned for the notification that will sound on my phone if mom opens one of the exterior doors during the night. (So far, this is most likely to happen preceding garbage pick-up morning, an event which manages to throw her into the cognitive soup, every single week.)
A couple of times she’s come up in the middle of the night to wake me because she’s worried about dad. He made a noise in his sleep, or he’s having difficulty breathing. She can’t wrap her head around what’s happening to him, even though he’s been on hospice care for nine months. I wonder what it’s going to be like when he really is actively dying instead of on this ridiculously low-angled trajectory towards it.
The silver linings
In the morning, I stick around until the caregiver arrives at 9:00. Meanwhile, I do my yoga, religiously, unimpeded by the things that tend to distract me at home. Afterward, my (amazing, supportive) husband brings me my coffee and hangs out with me, reading at the dining room table while I tackle the Wordle-du-jour. It’s a quiet time we don’t always practice with the same consistency otherwise.
Every two weeks when it’s my sister’s turn, life gets livelier. While mom & dad are still (usually) snoozing peacefully in the early morning, my sister comes up to my house for coffee. (Her husband stays back with mom & dad.)
We’ve created a silly ritual of our own: “morning coffee dance time.” (Put that in place of the “everybody dance now” lyric of the 90’s hit by C+C Music Factory, “Gonna Make You Sweat.” It never fails to crack us up.)
Before mom’s dementia got to this stage, my sister and her husband would usually visit once a month, for three or four days. She’d come for coffee two or three times, but now we have a routine that we genuinely look forward to, at least 11 out of the 14 mornings they’re here. We drink our coffee; discuss alternative plans for different scenarios for mom and dad’s care; talk about her playwriting classes. And when we’re caught up for the day, we dance around my house like a couple of idiots.
We’re closer than we’ve ever been. I’ll take that as my birthday gift any time.
Why? Because this is another unnecessary episode in the $#itshow that has been 2020. Because we have now come to point where politicization of objective science and equally objectively ludicrous conspiracy theories apparently have equal merit in the name of “balance” in the news cycle.
There was a time when we as a nation rallied excitedly behind science to achieve the dream of a moon shot. Now we have a large percentage of our population that has been so bludgeoned by alternative “facts” as to be convinced that the wearing of a mask (as DOCTORS and SURGEONS do every day to protect and be protected) is somehow an infringement on their freedoms.
I know this argument has been made before, but indulge me, oh snowflakes who don’t want to wear a mask because it’s uncomfortable or you think it means that you get less oxygen or too much carbon dioxide, or, what? It leaves a mark on your face? It fogs your glasses? It messes up your makeup? It’s “the man, telling you what to do?” F*&k you. It’s a small sacrifice to make, and is a joke compared to the rations and other sacrifices this country happily endured, for example, during WWII for. . . what? The. Greater. Good.
My parents are in their early 80s. Both have dementia. The last time my dad left the house (before the visit last week to the doctor that delivered his, and my mother’s positive diagnosis) was a month ago, when I took them for their flu shots. His vascular dementia has mostly affected him physically, rendering him incapable of most aspects of self-care, and now, the ability to get himself into and out of bed, or to even walk a few steps.
Mom’s dementia is different, likely exacerbated by hearing loss. She loses words. She gets frustrated. Agitated. Confused. Angry. The angry part was always there– I have said in the past that anger is her default emotion. The dementia amplifies it. As does the non-stop blaring of her choice of TV “news” media. I watch as it pushes all her fear and anger buttons. If faced with the unavailability of television, she will fall back to talk radio that stokes the same emotions. I used to try to discuss these things. It was fruitless. I was the enemy. I gave up in the name of peace.
Because of their dementia and its effects, we have caregivers in place to support them, 12 hours a day, seven days a week. I’m there several times a week, and recently, daily. When they received their positive diagnosis last week, I assumed that, despite all the precautions taken by their caregivers every day, either one of the caregivers (or I!) must have been the vector that infected my parents.
The plot thickens
Yet, all have tested negative thus far. Including me.
As I communicated updates to my sister last week, she enlightened me to something I didn’t know, which my mother had shared with her in a recent phone conversation. With apparent glee, she laughed while she told my sister how she sometimes “forgets” her mask when she goes grocery shopping (she may have dementia, but she knows she’s supposed to wear a mask. There is always one in her purse). She waits for someone to approach her to “remind” her before she’ll put it on.
So, let’s lay out our facts:
1) Everyone who has come into my parents’ home in the past two to three weeks has tested negative (I might also add that the caregivers are required to get tested every two weeks anyway);
2) My dad has had no contact with anyone during that time outside of their home;
3) My mother has gone grocery shopping at least twice in the past three weeks. While doing so, she has decided to sometimes not wear a mask while in public until someone asks her to put one on.
I should note that I offered, months ago as this all began, to do the shopping for my mother to keep her from being exposed. This irritated her. How dare I try to take away her one shred of independence? So I let her have her independence with a warning: “you’d better make sure you always wear your mask.”
I believe it is safe to conclude, based upon these facts, that my mother managed to be in the right place at the right time, failing to take the right actions, which made it easy for the virus to do what it does so masterfully: propagate itself through any available host.
The punch line
So here we are. It would be a stretch to arrive at any conclusion other than this: my mother brought this upon herself. And upon my father. So yeah. I’m pissed.
My mother used to be more rational, despite her propensity for anger. Now the toxic combination of her dementia, her emotional nature, and the constant drum of conflicting information she gets from the single-sourced media flowing into her brain have combined in the worst way.
But I bite my tongue and leave my rage in the car with every trip I make to their house to check in and take their temperatures and blood oxygen readings (three times a day). Overall their conditions have worsened in the past week, but they fluctuate from fine to concerning and back again.
It’s become quite difficult to find caregivers who are willing to put themselves at risk to help my parents. Their main caregiver has been a trooper, but the ongoing coverage is a juggling act. They receive full PPE from the agency, but these wonderful souls signed up to be companions and caregivers, not medical professionals dealing with a highly infectious virus. I don’t blame any one of them a single bit for opting out.
No perfect solutions
I’m working with the transitional care nurse at my parents’ doctors’ office to get visiting nurses in place as an immediate solution for ongoing assessment. That way I can stop putting myself (and, by extension, my husband, who has emphysema) at risk by taking their vitals multiple times each day.
Simultaneously, given the level of close contact that my father’s care requires, we all agree that the best course of action will be getting both of them into a COVID-certified care facility ASAP, where they would remain until they get the all-clear. So we’re also working on that. This assumes, of course, that their blood oxygen or other vitals don’t hit a point that demands hospitalization before that.
Don’t let this happen to you
If you’re in a high risk group, don’t expose yourself to this virus unnecessarily. Here are some ideas:
Let people shop for you. Spend that time going for a walk in the fresh air instead, or visiting in a socially distanced, safe way with friends or loved ones. If you can’t go for a walk, sit outside, or near an open window.
Turn off the news. Stop doing as many things as you can control that cause you anxiety or anger or evince any other negative emotion. Over-production of cortisol (the hormone our bodies release when our “fight or flight” response gets triggered) is linked to suppression of immune response.
Get your flu shot (there is reason to believe that it may help boost your immune response if you do contract this virus).
Eat healthy, fresh foods as much as possible. Drink plenty of fluids.
And everyone, for the love of God, yourself, and your fellow citizens, WEAR A MASK.