Don’t You Forget About Me – It’s Personal

Don’t You Forget About Me – It’s Personal

Meg

As I mentioned in a prior post, I put a bunch of resources together in a Dementia & Caregiving Resources link on this site for anyone in a dementia-related caregiving role. Some I have used, others I just have come across in the last decade of being a caregiver to my mom.

When I started this journey I hardly knew where to turn. I needed a whole new vocabulary, and a pretty abrupt redirect from wiping baby bottoms, facing my own newly diagnosed auto-immune disease, and trying to get back into the workforce. For a long time – too long – I tried to juggle it all, not understanding that even when I wasn’t earning a paycheck I was still a “working mom.” But that’s another story.

The Dementia and Caregivers resources page is intended as a starting point for anyone in my 10-years-ago-self’s shoes, while acknowledging that it’s not comprehensive or vetted and that each person’s experience, needs, financial latitude, relationship to the dementia patient, etc. will be unique. I understand that in the early days/years after a dementia diagnosis there’s both a desire/need to create a plan and know what to expect toggled with intense overwhelm and grief. If you peak under too many stones too early what you see can be unimaginable and emotionally paralyzing. While I recognize that, hopefully readers can take what they need when they need it from these resources and reflections. It is very, very hard to face any of this.

For context on my own experience, I have had to learn not to try or to expect to be an expert in ALL things ALL the time. I simply don’t – and can’t possibly – know everything there is to know about caregiving for someone with dementia. Doctors tend to reel off medical terms and medications like I, too, have a medical degree. MMSE (Mini Mental State Exam) score? Namenda versus Aricept? ADLs (Activities of Daily Living)? What on EARTH are people talking about? I felt like I needed to know more than I did – for a time, that I SHOULD know more (the directive of the word “should!” rises again) so I did what I do, which is to carpet bomb with questions everyone and everything I could. I attended a caregiver’s course through the Alzheimer’s Association; I visited assisted living facilities to see what they were like, what they cost, how long the waitlists were; I talked to my mom’s doctors from neurology to primary care right on down to allergy and ENT, not to mention lawyers and health insurers, property insurers and banks. And, oh my gosh, Medicare and the Social Security Administration – God help us all. Those frequently left me in tears because damn if they don’t make an already difficult situation so much harder.

I used the Alzheimer’s Association helpline once very early on – it was free so no harm no foul. It was nice to be listened to, but without firm answers or a checklist my anxiety spiraled. They sent me reams of paper with lists of assisted living homes and god knows what else that just left me totally overwhelmed. As I recall it, there was no context to anything they sent about how to choose what would be a good fit for our family and budget, how to narrow the list down, questions to ask, when to even start thinking about this step. What I wanted was a guide, a timeline, and a checklist. Probably a good social worker could have provided a lot of that, but somehow we slipped through the cracks and were not assigned to one. Okay, I take that back, we were given a contact at my mom’s neurologist, but she never gave me the sense that she was really listening to me nor offered any actionable steps to address my concerns so it felt like we were not assigned to anyone. Plus it’s so incredibly hard to actually reach a human being at a doctor’s office. You can choose all the options you want when you dial in, but you are still going to end up in voicemail. And if the call is ever returned you are inevitably standing in the middle of the grocery store or holding a kid on the monkey bars at the playground when it comes. I gave up on her pretty quickly, and at the end of the day slogged through most of figuring out what comes next feeling pretty alone.

I should note before I go on that the definition of “senior,” “elder,” and “geriatric” get kinda squishy at this stage of the game. I mean, 55+ housing is often marketed as “senior” housing, which given my viewpoint of the calendar of life right now is pretty laughable. 55 isn’t old and so, therefore, perhaps maybe neither are seniors? I don’t really know anymore, but I do know that those terms can be triggering, no one wants to labeled any of them really, but apparently that’s where we are all headed and sooner than we might think. SO, as with most labels, don’t hold onto them too tightly.

At a certain point when my mom still lived 300 miles away, I worked with a couple different geriatric care managers (GCMs), which is a type of social worker specifically focused on elder care (and therefore typically familiar with all the dementias), a resource that I reference in the Dementia and Caregivers Resources link. I thought once I hired a GCM that I’d be able to kick back and reprise my role as a daughter while watching all the issues and decisions I was facing evaporate. Sadly, that was not the case. I still had to call all the shots, but now I was being billed an hourly rate every time I picked up the phone or sent an email discussing options. I mostly felt like a middleman but with really big bills. Maybe GCMs are kind of like travel agents. Do you need them in this day and age where everything is online? Not really. Can they be super helpful whittling down options, creating tasks lists, and making a plan tailored to your family and your needs out of the amorphous blob that is information overload? Definitely. At the stage where I hired my GCMs I had pretty much already planned the trip, so to speak, so didn’t feel like I was getting much value from them. In the early stages when I had no idea what to do and they were willing to listen as I slowly lost my own mind, they were incredibly helpful and I owe a debt of extreme gratitude to the GCM who took my calls in those early days and offered me a steadying hand and a sympathetic ear. Though the later stages were a miss for me, this is not the case for everyone. Some of the references I called before hiring a GCM said they absolutely could not have cared for their loved one without them.

Like I said, everyone’s needs and circumstances are different. Caring for people with cognitive issues is intensely difficult- it’s emotionally devastating, impacts all aspects of their lives and their family’s life, can go on seemingly forever with modest declines (or go super quick – and no one can predict what you are going to get or how it’s going to play out), there are no days off, and it’s extremely expensive. You grieve and live and care for them all at once, often for years on end. Hence, the support resources.

Lastly, if you are at all like me and caring for someone with dementia who is genetically linked to you, you might find that you can’t help but worry about what the future has in store for your own brain. It seems that the suggested course of action, since there isn’t really anything else yet, always comes back to a healthy diet, exercise, and socialization. The metrics of those recommendations are a little fuzzy, but generally what’s good for the body is good for the mind. Now the McCance Center at Mass General Hospital also has a Brain Care Score that offers a somewhat more personalized, science-driven approach to measuring and enhancing brain health.

Good luck. And don’t forget to breathe through it all. It does actually help.

Don’t You Forget About Me Part III – Resources

Don’t You Forget About Me Part III – Resources

Meg

Just a quick note here to say that I have added an entire drop down menu for various types of resources about dementia and caregiving. So check that out from the homepage menu.

Also, I had no idea that Rosalynn Carter noticed and has been addressing the hard work of caregivers for over 35 years. Until she passed away on November 19, I only vaguely knew who she was, and mostly it was as a team with former President Jimmy Carter. Today, as she is laid to rest, seems the best day of all to recognize the incredible contributions she has made to this world.

The Wonder of the Imperfect

The Wonder of the Imperfect

Meg

Can you envision a world renewed by imagination and integrity? This is the vision of the W.S. Merwin Conservancy in Maui, whose mission it is to inspire innovation in the arts and sciences by advancing the ideas of poet W.S. Merwin – his life, work, house and palm forest – as fearless and graceful examples of the power of imagination and renewal.

I am highlighting this specific Merwin poem because anytime someone embraces imperfection, my ears perk up.

Be real, be imperfect, be compassionate, and live with integrity and imagination.

THE WONDER OF THE IMPERFECT

Nothing that I do is finished
so I keep returning to it
lured by the notion that I long
to see the whole of it at last
completed and estranged from me

but no the unfinished is what
I return to as it leads me on
I am made whole by what has just
escaped me as it always does
I am made of incompleteness
the words are not there in words

oh gossamer gossamer breath
moment daylight life untouchable
by no name with no beginning

what do we think we recognize

– W.S. Merwin, from The Moon Before Morning (2014, Copper Canyon Press). Used by permission of the publishers.

Maui Beach photo

Photo from http://welltraveledkids.com/2016/03/6-great-family-beaches-maui-perfect-kids/

Don’t You Forget About Me Part II – Memory (and Mortality) on My Mind

Don’t You Forget About Me Part II – Memory (and Mortality) on My Mind

Meg

It is ironic that, if you’re lucky, you’ll end up getting old. And, yet, most people (Americans, anyway) are in complete denial about it. The vast majority fight any changes to their lifestyle until they find themselves in a full-on crisis. Human nature? A fighting spirit?

Letting go of a phase of life is hard, especially when accompanied by stubbornness (that is possibly – probably? – driven by grief and fear). Amusingly, from my observations, there is also a dose of ageism and othering, as in, “old people live in ‘those places’ and I don’t want to be surrounded by old people” (to be fair, given that I continue to think I am 25 and that ship sailed a couple decades ago, I can see more clearly now how this cognitive dissonance could happen). And then, of course, there’s our culturally-driven death denialism. This excellent TED Talk and NPR story – Death Is Inevitable. Why Don’t We Talk About It More? – lays out very honestly the reality that life and death go hand in hand. What are we afraid of?

I get that it’s hard to face a future where you might be less capable than you are now. Or dead. But, also, if you don’t approach that future proactively, you put someone who loves you (or is responsible for you) in a position of having to do it for you. And what’s really not fun? THAT. Because being in a situation where a decision is made for you doesn’t feel great for anyone involved.

The website and podcast Best Life Best Death provides great insights and resources for these types of discussions and decisions. It turns out that as scary as it might be to think about, it’s actually quite empowering to face into it. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End, similarly, discusses end-of-life care and aging, specifically with the lens that medicine CAN – and often does – prolong life, but it doesn’t distinguish between quality versus quantity.

One aspect of aging that Gawande discusses that resonates with my lived experience is long-term care. This can be achieved through in-home care or a care home/assisted living-style place. In-home care can work up to a point – it depends on how many hours of care are needed, if there is more than one person in the home, if you can find good caregivers. With in-home care the vetting, hiring, firing, and oversight of caregivers falls on the family. In a care facility, that level of management gets taken care of. In my experience, the economies of scale flip dramatically toward a care facility when overnight care is required. As I mentioned in my first post on long-term care, it is a big, complicated, and multi-faceted subject.

Gawande notes that the traditional nursing home, which is probably what comes to mind if you are 30 or older and haven’t been in the trenches of caregiving in the last decade, focused so heavily on resident safety that the living environment was, well, institutional – personality-less, depressing, and uninspiring. More and more community-focused and less institutional options exist now, like the one in the Netherlands highlighted in the NPR episode I spoke on several months ago (link) or the one in France (link) or the one in Canada (link). They may not exist in the U.S. in the distinct forms reflected in those examples, but there are definitely independent and assisted living communities that nurture the same kind of vibe. Where my mom lives, for example, though it’s not a village design per se, residents move about freely, have choice with their daily meals and activities, and staff provide creative programming to keep residents engaged (ie no one is sitting in a wheelchair in a hospital-like corridor staring into space for hours on end).

These communities answer the concern of not wanting to be isolated, institutionalized or separated from the rest of society as we age. For people of sound mind right up to moderate dementia, they are a downright dreamy compromise between maintaining one’s autonomy and agency while living in a place that fosters community and can handle the inevitable issues that arise as one ages (falling, complicated medication management, mobility issues, impaired driving, etc.). And that’s great.

BUT, when you are talking about someone with Alzheimer’s or dementia, it’s a whole different ballgame. As those diseases progress, the bucolic concepts of integration into an age-diverse community and free-will are just not realistic.

I really stumbled in Gawande’s book and in listening to the NPR piece about adapting care models in the US over this issue. It’s this grand philosophical abyss: what happens when a person no longer has the ability to make decisions for themselves, but also isn’t actively dying any more than the rest of us? There isn’t quality to preserve or new memories to be made or even old memories to review. It’s just an existence. My mom has all the free-will in the world, but doesn’t move of her own volition. She doesn’t speak or make any decisions either. She is well-loved by her care team, her needs are met, and she seems happy. Which is an enormous relief for me. But, if she weren’t, and many aren’t, what really can be done about it? It’s much more fuzzy from this vantage point to expound upon what matters most in the end. The end, when it involves dementia, can be quite a lengthy state of pending for all involved. I’ve taken to calling it grief purgatory.

There is an absolutely perfect discussion of this challenge in a super funny/sad podcast called Let’s Not be Kidding. Episode 6 – The Bus Stop at the End of the World – sets up so much of what I have been trying to write about but keep getting tripped up over. Listen to minute 3:30 to 5:50 or so…it even mentions the, gulp, costs (which I will get into another time and, of course, impact many people’s proactive efforts – if you can’t afford a care home, what else is there to do but wait until the crisis comes?).

My mom has lived at the bus stop at the end of the world for five years. Even here, we used to go for coffee and for long walks in her neighborhood. She would join our family for Thanksgiving or Mother’s Day or just to visit. Now it’s a project to get her from her bedroom to the community room. It’s a continuing evolution to less. I consider the village style residences and the premise of changing long-term care in the U.S. for people with dementia, as discussed in the NPR episode I was interviewed for, and I’ve decided that we have to face the fact that there are two different situations happening here. One is early stage dementia or just a nice, older person trying not to be a burden on their relatives and choosing to move to some sort of retirement community. And then there are the locked floor stages of dementia and Alzheimer’s with assistance required for all activities of daily life. And these are vastly different. The needs of the patient as well as the families throughout each of these stages and levels of aging and caregiving are also vastly different.

Oddly, the most held I’ve ever been in this decade-long journey was when my mom was on hospice and seemed to be actively dying (spoiler alert: she didn’t). It was the early years when we suspected Alzheimer’s and just after her diagnosis when I really could have used the knowledge, understanding, and support that comes with hospice. I had literally no idea where to even start in those days. It’s been 10 years now and I speak with people every few months who get sent my way one way or another because they are facing similar questions and concerns and don’t know where to turn. Existing support systems – logistical, financial and emotional – are woefully inadequate. Families and caregivers across all income brackets need help to function – and to keep functioning for the many years that these diseases interrupt a life – until someone figures this whole dementia issue out.

I haven’t even gotten to the part where the needs of dementia patients are 24/7/365 and typically beyond the capability of a single individual. And that universally across the US the number of domestic workers/health aides/caregivers is really low and the quality and reliability of these care providers is wildly variable, both for in-home care and at a facility. This is a profession that is traditionally underpaid and these workers need support to achieve adequate wages, health insurance, paid leave, job training, and retirement planning for themselves. If domestic workers aren’t treated with dignity and can’t achieve a living wage, how do we expect to care for our aging population as the number of people living with dementia increases?

I don’t know where the oxygen mask is in this post, but I felt all this needed to be said (and maybe that’s it, I just needed to put it out there and get it off my chest – surely there are others who are or will experience this, and there’s some solidarity in that). Adjusting the architecture, design, and ethos of care communities is surely one piece of the puzzle. However, as ever, fundamentally what makes a home are the people in it and how they care for each other. The people who are losing their agency, their families, and their caregivers need to be integral to and at the forefront of making long-term care better.

And, with that, I need to publish this thing once and for all!

Deep breath. Somehow, we got this.

Keeping It Brief

Keeping It Brief

Meg

What is the saying? “Perfection is the enemy of progress?” Or, in my case, just doneness. I am not even trying for perfection, and yet multiple posts I have drafted linger in draft purgatory as I commit to reading all the news (ugh, why?) rather than work on revisions to what I have written. I mean, I could clean the house or do some laundry, also worthy distractions, but sitting down at the computer is the goal so I get that far and then dive down news wormholes.

But today – TODAY! – I have shown up and re-read what I have written and can confirm that the subject still matters. I remain all tripped up on some enormous lines of thinking, though, so it’s still not quite ready to get out there because it feels long and heavy and more like a treatise in places, a rant in others, and a term paper throughout. Is it a problem that even I am bored by what I have written? Probably.

And, so, cribbing off my monthly writing class that is part meditation, part motivation, and mostly a bunch of pretty talented poets showing me how to see the world and writing in a whole new way, I am aiming to write short, clear and pithy. Not strengths in any way. Here’s what I came up with today :-).

I have been trying to write poetry,

Which appears to require brevity,

A skill set with which I am in short supply. 

And, with that, I encourage you to take a deep breath, skip the news, and do something that fills your cup, even just for a couple minutes.

On a Quest for Quiet

On a Quest for Quiet

Meg

Hello and happy summer!

It’s been ages since I’ve managed to sit myself down and write. Quieting myself and settling into stillness are not strengths of mine, but I am working on it.

My kids have been away for four days, it’s 6:30pm, and this is the first time I’ve really sat and felt settled since they launched. Me thinks it’s not them that causes the whirring frenzy, perhaps, but me. That is good data. And, also, each day presents a new day to practice.

It’s funny because I vaguely remember vowing to myself in those pandemic months that brought the world to a stand still that I’d bring forward into my future life the lessons I learned then about finding quiet (inside me as much as around me) and saying no sometimes to preserve open spaces on my calendar. How quickly old habits return and suddenly life is leading me again versus the other way around.

Today, in this moment, though, I have found my way to quiet. And I am celebrating the calm that is washing over me, even now as I write.

To close I am sharing a poem that resonated deeply with me when its author, Rosemerry Wahtola Trommer, read it aloud to our writing group last week. I have turned to these words daily since. I hope they resonate for you as well.

Take a deep breath in….and then blow it out. That always, always helps. If only I can remember to do it.

In a Time of Much Doing

How soon I seem to have forgotten
how to be still, how to not plan,
how to step out into the day
and let the world itself write
the story of how a morning becomes
an afternoon becomes a night
becomes a woman.
How soon I seem to have forgotten
the value of not doing,
the gift of unscheduling,
the blessing of dipping my toes into the stream
of no time, then wading in full body,
where I remember I am part of an infinite story
at the same time I relearn how fragile it is,
this life.
How soon I forgot I could change it all.
Even now, I could be still again.
I could choose silence.
Even now.

Rosemerry Wahtola Trommer

It’s a Dog’s Life: Lessons from My Dog VII (Find Place and CHILL)

It’s a Dog’s Life: Lessons from My Dog VII (Find Place and CHILL)

Meg

Hi, again, Tucker here.

I’ll be honest, I have been one wound up schnoodle recently. I am still as fluffy and lovable as ever, but my main hooman (the mom one) has been using – ahem – inappropriate language in my company (in fact, directed at ME, I dare say) way more than normal these days.

In my defense, the weather is getting warm and there are SO. MANY. GOOD. SMELLS. Grass growing, bugs flying, flowers blossoming, other animals out and about. A veritable cacophony for the senses. Plus the bunnies taunt me all day long, sitting just outside my window chewing on MY grass. And then the hoomans keep putting meat on the firey thing on the back porch causing these incredible aromas to waft through the air (who am I kidding? Raw or cooked, that meat smells damn fine to me!).

What is a dog to do? I am not a guy to be vague about what I want. Some may say I have a stubborn streak. Perhaps that I am a bit needy. I believe in speaking my truth. And, the truth is, I want their dinner, not mine. Needless to say, whining (on my part) is involved and then cursing (on my main hooman’s part) follows. So undignified.

These episodes always end with me being sent to my Place cot. At first I act like I’ve never heard that word before and I have no idea where I am supposed to go, but then I have a “light dawns on Stonehenge moment” and I leap over there with an expression like, “Here? Is this what you meant?” I do enjoy a bit of improv theatre. Then I am told – quite emphatically, I might add – to SIT. And then to Stay. There are treats involved so I am all in on this game.

What’s really amazing is that within seconds of sitting on Place (aka a forced time out), I feel so much better. Almost like the whining and fussing is some sort of out-of-body experience and Place gives me a moment to pause and reset that puts me back in touch with my inner schnoodle. One minute I am pacing and whining and begging for hooman food and the next I am lying down on my cot and this big, deep sign spills out of me. Ahhh, what a relief. All that frenetic energy just floats away.

It occurs to me in my moments of Zen – is it me that needs Place, or is it my hooman?

Because, if we are being honest, she seems a little wound up, too. It’s, like, way too easy to push her buttons.

My main hooman says I am driving her to drink, but if she would just pay attention she would see that I am showing her the path to inner peace: find a peaceful place, sit still, and breathe. Anxiety melts away and you emerge from this pause with more clarity and more mastery of being instead of constantly doing doing doing.

If nothing else, I am here to teach.

My advice: send yourself to Place and take a deep breath. It takes practice to learn how to do it for yourself, so have someone send you until you figure it out. I highly recommend extorting them for treats as part of your healing process.

Photo by Samson Katt on Pexels.com
The Directive of “Should”

The Directive of “Should”

Meg

Sometimes known as “shoulding all over yourself.”

I say “should” all day long. As in: “I should eat better.” “I should cook more healthy, homemade meals” – or the corollary – “I should get less takeout.” “I should write a book.” “I should be studying Spanish.” “I should be more disciplined (if I were I’d have written the book AND be fluent in Spanish.” “I should get some exercise.” “I should work full-time.” BUT ALSO “I should spend more time with my kids.” “I should be more present.” “I should write a new blog post.” “I should finish the stack of books by my bedside table.” “I should clean out the basement.” “I should be – fill in the blank – better, smarter, faster, more…” Except when “I should be quieter, more thoughtful, slow down.”

In sum, “I should definitely not sit still or pause to take a deep breath. ” Relax? Hahahahaha. PRODUCTIVITY is next to godliness. Or is it?

While none of the above cause obvious harm (except the part where I forget to breath in my pirouetting around) and all are fine aspirations (feeding my family healthy meals, for example, leans more toward the worthy obligation side of adult shoulding), the use of the word “should” results in a sentence that means something very different from the same sentence using the verb “want.” Not to mention that some of my shoulds are downright contradictory.

Look. Being busy and productive isn’t a bad thing. I like to be busy. It’s the tone of the busyness directive, and who is setting the agenda, that can be problematic. 

Should is an incredibly strong little word. Google tells me that it is a modal auxiliary verb, which I don’t remember ever having learned in my 8 years of Catholic school grammar (though, obviously, I SHOULD remember it and probably did learn it, if nothing else through example since Catholic teaching is based on should). Though should can be the past tense of “shall,” it is used primarily “to indicate obligation, duty, or correctness, typically when criticizing someone’s actions.” Trust me, should can be a powerful and judgy dictator. It implies that what you are doing really isn’t sufficient, and that there is more or better or different to be done. Like, get it together, you disappointment. Which is basically the shortest synthesis of Catholic school education there ever was.

When should is in charge, you cannot win.

Should brings even more heat when you move into the past. When you are shoulding yourself at least there is still hope that you could do or be better in one of the many ways you cajole and judge yourself.  The advanced phase of shoulding results in complete admonishment for the lost cause that is you with “I should have done X!” – ahhh, it’s all so obvious now, but it’s in the past and I really should have known better in the present. This tense of the verb is sometimes called the “modal of lost opportunities.” That sounds about right.

Like I said, some shoulds are necessary. And productivity is great. But it’s really important to bring awareness to what you are running around in service to and who is in charge of that action and directive that is key. Be the master of your own destiny! Also, saying no with no regrets is totally a thing. Or so I have heard.

Listening to oneself – really listening – is a rebellious act as well as an act of love. That’s my kind of rebellion (hashtag #shouldrebellion).

Don’t You (Forget About Me)

Don’t You (Forget About Me)

Meg

If you are a person who intends to live a long life, or if you know someone who is already living or intends to live a long life, gather round.

More than 5 million Americans 65 and older has some form of dementia, according to the CDC. That number is expected to triple by 2060. TRI-PLE. Basically, if it hasn’t hit you yet, it will. And when it does, if you stop reading here you will learn the hard way that you are basically stuck between a rock (not ideal care options) and a hard place (going literally broke to pay for care). And you’ll also miss the 80s flashback at the end of this post.

Long-term care for people with cognitive diseases such as Alzheimer’s and other dementias in the United States is totally broken. This may be true for other conditions, disabilities, and age groups as well, but dementia is what I know. Please refer to our broken health care system for myriad examples of similar dysfunctionality.

A couple of weeks ago I spoke with Paige Sutherland from NPR’s On Point about my experience with long-term care. The episode – Is it time to rethink how we care for dementia patients? – focused on the quality of care for those with dementia, highlighting unique places that have done it differently (village-style settings, more autonomy than is perhaps typically offered in memory care). Check out it and other related resources on my Podcasts, Articles, Books and Websites page.

Personally, it was heartening to hear my mom’s story and voice out in the broader world again. She doesn’t speak much and hasn’t used a phone in easily more than five years so unless you visit her or work with her, her disease has cut her off from the outside world. To hear her name and voice on the radio was nothing short of mind-bending and thrilling.

I came away from the interview, though, realizing once again how complicated and multifaceted dementia and dementia care is. This particular OnPoint episode highlights some of the issues and opportunities with the disease and long-term care, but all the myriad tentacles that touch a family’s life with a dementia diagnosis really requires a multi-part series.

Dementia, of which Alzheimer’s is one version, is a slow-moving tragedy for most (early onset tends to move more quickly). While it slowly destroys your loved one’s mind, it disrupts family finances, implicates the U.S. medical system (which seems bent on punishing people for getting sick through no fault of their own), requires patients and their families to go bankrupt to receive government support. Let’s not even talk about lost wages (and ultimately professional trajectory, in some cases – not to mention sanity) for the family member/person responsible for shepherding the care of their loved one. Or the fact that many private caregivers (“home health aides”) sent through various agencies do not make a living wage, do not have health insurance of their own, do not receive professional training, do not have retirement plans. They typically work multiple jobs just to survive, often taking advantage of having a client with cognitive impairment to nap. Many (most?) are immigrants. Most don’t drive. And none are authorized to give medication. And this just scratches the surface.

Fun facts:

  1. The federal government does not recognize power of attorney (though everyone else does). As power of attorney, one has access to bank accounts and all sorts of decision-making power, but one can’t get a Medicare statement to appeal a charge or an end of year social security statement for tax purposes without cooling one’s heals for several hours at a Social Security office. Time, you know, generally, that caregivers don’t have to spare.
  2. You have to be broke to get a Medicare bed at an assisted living facility. And there’s a five year look back so it’s not like you can move around assets you may have wanted to save for, I don’t know, your kids’ or grandkids’ college tuition or your own retirement or something like that. I mean, who doesn’t want to face bankruptcy in their twilight years? Note: I spent a lot of time trying to double-check this and to understand the Medicare website. I used a website called Boomer Benefits that translated what the Medicare site was saying into English I could understand. I am relying on them for accuracy at the moment. As a not-expert in geriatric care or law, this is how much of the whole last ten years has gone. Research on the internet, read lots and lots, talk with others, get the best understanding I can muster. An elder law attorney would have answers, and also billable hours. See footnotes below.
  3. How about losing out on both your family home and potential income for a loved one’s care due to a parent who didn’t pay their mortgage, unbeknownst to the children, and the house is foreclosed on. Listen here for more on How An Older Person’s Money Errors May Be a Sign of Some Sort of Dementia.
  4. If you choose – or need to go to – a private care facility (see above: not yet broke), and by some miracle your loved one just keeps on living for no good reason other than that they have this crazy will to survive, you will almost undoubtedly run out of money before anyone steps in to help you. In my case, I created a budget for my mom’s care expenses early on and I update it annually. I always trend her costs out assuming 3% inflation annually, which is typically a fairly reasonable rate. Guess what I did not factor into my budget? A pandemic. Inflation. Needing to increase staff wages to retain them (honestly, surely that is a good idea anyway. Why is it that caregivers and teachers and all the people who do the most dedicated, intimate, meaningful work for our families and loved ones are paid the least? How messed up is a financial system that values money over, I don’t know, values?).

The truth is, you don’t usually know much about this until you’re in it. And when you are in it, it’s a really tough time to learn about it or to change the status quo. I was thrown into this role by circumstance, and I do my best to honor my mom and her story. Along the way over the last 10 years I’ve tried to improve, to the extent possible, the road ahead for others in similar circumstances through my work as a Patient Ambassador, as a writer, when opportunities like NPR’s present themselves, and when people call me asking about the care my mom receives because they need to consider what comes next for their loved one.

If 9 to 15 million Americans are going to be impacted, depending on who you ask, this disease is going to affect us all one way or another eventually. We need to work together to improve care models and support, both financial and emotional, to help families function until there’s a cure. It’s a terrible feeling to be forgotten.

I know this isn’t about dementia, but it fits (and it’s a great song):

Footnote

“Most assisted living facilities provide what is considered “custodial care.”

Custodial care typically includes assistance with activities of daily living. These are tasks like eating, bathing, dressing, and using the bathroom. In some cases, it can even include health-related activities people usually manage on their own. Some examples would be taking daily medications or using eye drops.

Custodial care can be either long or short-term, depending on your condition. It can be provided in an assisted living facility, nursing home, or even in your own home with a home health aide under certain circumstances.

Medicare typically does not cover any costs associated with custodial care if that is the only type of care you need.

However, if you are in an assisted living facility or nursing home, Medicare still covers all of your Part A and B medical needs. This includes doctor visits and medically necessary therapy services, plus your prescription medications if you have Medicare Part D.”

Oh, the Wrinkles

Oh, the Wrinkles

Meg

Lately, when I take a good look in the mirror, the phrase that comes to mind more often than not is, “Dude, what happened?” Since I think I am still 25, that is, in fact, the exact expression. Sometimes it’s just “dude,” sometimes it’s a simpler, more inquisitive “huh” sound. But the confusion and questioning as I inventory my gray hairs and wrinkles is the same.

Where – and when -, exactly, did all these pinch points around my eyes and mouth develop? I barely noticed. Somewhere along the line time started running away from me…and just kept going! I remember when I was a kid and time stood still for days on end – long, aimless, completely boring days, especially during the sweltering summers of my childhood. I’d complain to my mom that I was bored and she’d tell me she could find me work to do around the house and, voila, I would instantly be cured of boredom and find myself somewhere else to be and something else to do. In hindsight, that was a pretty predictable outcome (my mom knew what she was doing!). These days I can’t remember the last time I had the occasion to be bored.

Needless to say, a fair bit of time has passed since I was a little girl and even since I was 25 (ho hum). I mean, literally, that was more than two decades ago. I don’t know if I’ll ever be able to wrap my head around that.

What I do know, with absolute certainty, is that I have earned every one of these wrinkles. Sure, some probably came from poor sunscreen choices when I was a kid. But a lot came from standing on the precipice of a new adventure or from facing into the difficult stuff that inevitably comes up in a life and not turning away because it was too hard or painful or might cause me to break (or wrinkle). I have broken down and gotten myself back up enough times now that I guess I should know I have some serious years under my belt.

Though I may have the odd Botox dream (ha ha), in fact each wrinkle is a hard-earned badge of a memorable life. It’s the sign of time spent leaning in to all of the adventure, opportunity, and challenge that come with living fully. Not to mention the laughter. As Lori McKenna so pithily says in People Get Old, “Every line on your face tells a story somebody knows.” What a wonderful sentiment.

From heartache to adventure, hard work to achievement, sunny skies to skinned knees, those wrinkles are the story of your life written across the canvas of you. Live and lean into those lines.

Photo by Engin Akyurt on Pexels.com