A frank update on dad, and a philosophical look at a life in filial limboContinue reading
Sharing details about dementia’s progression in a loved one can be tricky. But it feels important for me to share, especially right now.Continue reading
Everybody has one
And most of us have the same Gorilla that lurks around the periphery of our lives: one we all have to face but no one wants to talk about. If you’re a regular reader of my blog, the Gorilla’s identity won’t come as a huge shock.
Gorilla, thy name is Death.
Not only do we all have to face it for ourselves, we have to face it – survive through it – for many of those we love during our lifetimes. When someone we love dies, we have to find a way to pick our broken selves up and continue living, despite the pain – the often searing, indescribable pain – and the gaping hole that death has left in our lives.
We all understand – at least intellectually – that death is the sole, constant, unavoidable certainty that not one of us, rich or poor, can escape. (Yet. God forbid.) And yet, as a culture bent on “self-improvement,” the one thing that happens, predictably, over and over, day in and day out, every single day, literally thousands of times a day, we mostly SUCK at.
I have a simple theory about why that is, though I will save that for a future missive. In fact, I have a lot of thoughts on this topic. I’m still trying to organize all of them in a way that makes this, one of the most taboo subjects in our culture, compelling, accessible, and engaging in a way that puts our 400lb Gorilla on a diet for the ages, and shrinks it down to something we can face, and even embrace, in a healthy way.
Not now. Not today.
We know it’s going to happen to us eventually, but not today, right? So we don’t have to think about it. We don’t have to deal with it. Not today. Shouldn’t we be focused on more important things, like that big meeting? What to do about that package that got ripped off from our front porch? Making sure the rent or mortgage gets paid on time?
It’s a neat trick our minds play on us – when we fear something, we avoid it. The avoidance allows us to fool ourselves into thinking that it doesn’t exist, so the immediate fear responses go away.
We distract ourselves with the endless array of enticements served up on the platter of our ever-ready-to-serve corporate/consumer complex. With social media. With comparing ourselves to everyone else, both consciously and unconsciously. Better keep up. Or else.
I’m not in any way saying that we shouldn’t, or don’t have to, focus on those “more important” things. But I am saying that if we aren’t willing to think about, talk about, and really face the inevitability of death, we’re sitting ducks for all the distractions our world has to offer. And that’s where we really start to lose.
Our fear of death is ruining our lives
How many times do we have to see the sad wake of the death of someone important in the life of a friend or acquaintance – the admonitions to tell your friends and family how important they are to you; to live every day as if it were your last; that you never know when it’s going to be your time, or theirs? It’s always so crystal clear when it happens close to you.
And yet. Our ability to continue to live that way is inversely proportional to how close to us the death event happened to be. We slide, too easily, back to worrying more about how we look in a selfie than what will happen to everyone in our lives if we’re unlucky enough for today to be our last day.
Billions of dollars in our economy are taken in by manufacturers of youth-“preserving” goods and services to thwart death and everything associated with or suggesting its existence. Worse than the money is the time. The insidious, creeping seconds that become minutes that pile into hours of our days; hours that we lose down rabbit-holes of self-absorption. Healthier, better-looking, stronger, fitter . . . Keep up with the Joneses – better cars, a nicer house; more, more, more.
Not that we shouldn’t want to better ourselves – getting or staying healthy, for example, is important for many more reasons than simply staving off death. But the cultural obsession with all of it is both symptom and root cause.
Whether we recognize these activities as a symptom of the fear of death or not, ultimately, that’s really what it’s about. And this collective superficiality, I would argue, is a major cause (not THE major cause, but one of them) of our spiraling issues with mental health, substance abuse, even just the vague, lurking malaise so many now suffer.
Never mind the practical negative impact on families
My current set of life circumstances force my sister and me to confront the notion of death every day. Regular readers know that both of my parents have dementia; dad has been on hospice for nine months, and a low-angle trajectory towards death, for four-plus years now. Mom is currently experiencing a period of steep decline in cognitive function.
Because I write about the realities of this world, I hear from a lot of readers about their own challenges with loved ones in decline. But the people I hear from also share stories of alarming dissent and discontent from their family members regarding their situations and the painful impact of denial. See if either (or both) of these two, all-too-common, stories sound(s) familiar to you:
1) Unprepared “patient”
Older parent or loved one has been experiencing some issues (health, cognitive decline, both, whatever). One or more children or other loved ones notice(s) and attempts to discuss with the “patient.” Patient does one or a combination of the following: brushes it off, argues, denies anything is wrong; says they don’t need any help; refuses to engage in any meaningful way.
Eventually, of course, the situation declines to the point where denial by the patient is no longer really possible. Sometimes this is a slow, painful downslope. Often, it’s one which, had frank conversations occurred beforehand, mitigating care and other interventions could have been provided, lessening the pain and suffering for everyone: patient and loved ones, physical and/or emotional. Other times, unfortunately, it takes the form of something “sudden” and catastrophic (major cardiac event, stroke, etc.), leaving patient unable to direct their own care.
Thus unprepared, loved ones and caregivers are left to guess at care (and yes, end-of-life) preferences, often leading to . . .
2) Warring siblings/relatives
Oh, let me count (just a few of) the ways:
- fights over whether dad is really (fill in your condition of choice) and why he does/doesn’t need more help;
- battles over housing situations and whether or not safety is a concern;
- selfish squabbles that really boil down to spending often-limited resources on care (which – gasp – are essentially about “what’s going to be left for me?!“);
- re-emergence of decades-old, but impossibly ingrained childhood pecking-order rivalries;
- barely-disguised, seething anger directed at “dad” or “mom” because now we really have a situation, and we’re fighting about what to do.
Everyone will have an opinion, but no one will really have the answers because NO ONE EVER WANTED TO TALK ABOUT IT.
So, some unsolicited advice
Just freaking stop.
In and out.
2) Look around you.
Count whatever blessings you have, however meager you may think they are, every day. Acknowledging them forces you out of the rabbit-hole (see above), and, like rabbits, those blessings do tend to multiply once you start paying attention to them.
And work, to alter your daily mindset to surround and confront the UNDENIABLE TRUTH that you don’t get to live forever (nor would it be a good idea to even live to be 150 – a topic for a future post). Tomorrow – hell, today – could be it. Seriously. Stop wasting your time on superficial shit. Get ruthless about how you spend your time, and spend it wisely.
4) For the love of GOD, write a will
And medical advance directives. And powers of attorney. You will not regret this, EVER. Nor will everyone left reeling (or possibly feuding forevermore, and irreparably fractured) in the wake of your certain demise.
5) Lose your fear of hospice care
Hospice is one of the greatest things ever created to support both patients AND FAMILIES with transitioning as peacefully and comfortably through death as possible. Hospice WILL NOT KILL YOU. (News flash: you’re dying anyway.) Hospice will comfort you. It will pay for things you would otherwise have to pay for out of your own pocket. It will provide amazing, compassionate teams of people who are there for one thing only: making the (sometimes very long, very slooooooooow) process of dying as bearable as possible.
So don’t be stupid about this. Save yourself, and your loved ones, some actual money, and as much difficulty as possible. If you have the choice (i.e. if you didn’t die in a sudden, tragic event), do it. Ask a hospice care agency whether (or when) you qualify. The sooner the better, once you or a loved one is diagnosed with a terminal condition.
6) Also, STOP NOT TALKING ABOUT IT.
Talk about death. With your family, and/or everyone close to you who will be impacted by your death. Early, and often. It doesn’t have to be morbid. Entire cultures/traditions have perfected the acceptance and even celebration of death as the very real fact, and transitional event, that it is. (One life-changing, perception-shattering book for me, years ago, was The Tibetan Book of Living and Dying.)
Face your fear, and it will begin to wither. I promise you. Talk about it with an open heart, and with all the love and hopes you have for the ones who will go on living. Their lives will be better for it when you’re gone. Let this be a part of your legacy.
We should be talking about and planning for our deaths with at least the same vigor and attentiveness we’d give to the planning for our 50th (or 100th!) birthday party (or our kid’s ridiculous one-year birthday party, or a wedding, or any other big event in our lives).
Because some of these other events may not occur in your life, but your death certainly will.
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.
A sleep-deprived little Brady Bunch riff (plus another lesson in dementia care)Continue reading
Smaller – My Mom’s transitions through her own (and my Dad’s) dementiaContinue reading
My Dad is dying. And he doesn’t know who I am anymore. How can I be okay with that?Continue reading
How my parents’ dementia is teaching me to grieveContinue reading
My unbiased review of Covid-19 now that we’re on the other side of itContinue reading
And I’m pissed
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.