Category: Dementias Daughters

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.

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.

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.”

Dementia’s Daughters

Dementia’s Daughters

Meg

This past December, I had a wonderful experience of connection that reminded me that only if we are honest about and open with our vulnerabilities will we truly connect.

A woman living on the other side of the world found my blog and my essays about my mom and emailed me to share a little bit of her own story about being in the middle of raising young children and also caring for a parent who is losing their memory. I remember so vividly the loneliness and confusion of those early years that I was touched by the fact that I could offer some brief respite and solace to another daughter of dementia.

The first years leading up to and after my mom’s diagnosis were some of the worst of this Alzheimer’s journey, even though her disease is so much more advanced now. I assume my mom was lonely and confused, too. She knew she was forgetting some things, though she forgot more than she realized. She was aware that things weren’t always adding up, a fact that still takes my breath away imagining how frightening and painful it must be to lose pieces of yourself, to blip in and out of the world making any sense at all. It’s one thing to be lost in your own world, as she is now; it’s quite another to know that something is happening to your mind, your agency and autonomy slipping like water through cupped fingers, unable to hold onto it or to grab it back.

I am a do’er and a fixer by nature, but I didn’t know what to do or even where to start after my mom was diagnosed. She didn’t really want to – and maybe couldn’t really – deal with it. Between her cognitive loss and an instinct to protect herself, projecting toward this difficult future wasn’t going to happen. Those years manifested in a constant, low-grade ache between my diaphragm and stomach, where all my anxiety lives. Alzheimer’s/dementia is a slow-moving crash course in loss.

No Power + Responsibility = Anxiety

Inspired by the solidarity I felt with this stranger from the other side of the world, I looked back at other emails that lovely readers sent to me after my essays about my mom were published. They reminded me that I write both to make sense of my own lived experience and to discover and highlight the myriad facets our common humanity. Personal narrative, as a genre, is inherently personal. The key is for one’s personal story to resonate with others in some universal truth kind of way. The word essay actually derives from the French verb “essayer” which means “to try:” try to create meaning, try to connect through storytelling.

Over the years I have heard others share their opinion that the memory unit is one of the most depressing places in the world. When I am there, though, I feel like I am among family. The caregivers and staff do the hard and sometimes thankless work of caring for the residents 24/7. Their caregiving allows me to reprise my role as a daughter after years overseeing my mom’s daily care. All of the residents are someone’s loved one, their diagnosis another family’s heartbreak, their decline something all of us have or will experience in some way. Those who visit – old friends, children and grandchildren, nieces and nephews, siblings, and spouses – all hold stories of who their loved one was, what they loved to do, how deeply they are loved. By sharing the joys as well as the suffering of our similar circumstances we create connection and this connection creates meaning. There is easy companionship in knowing that your suffering is understood implicitly, that your grief is shared, and that you and your loved one are seen and are not alone.

The senselessness of dementia demands a quest for meaning. The connection we share and the ability to hold and share my stories with others of dementia’s daughters gives this decade of my life one answer to the existential question “why?” If I can share my story and offer solace to even just one other person, all that my mom and I have learned and lived will not have been for naught.

The Problem of Alzheimer’s by Jason Karlawish is an excellent recent resource about Alzheimer’s.

Partnering: Forge the Deep Connections that Make Great Things Happen by Jean Oelwang is a wonderful book with resources on how connecting and working in partnership with other people (versus in a hyperindividualistic silo) unlocks manifold rewards.

My podcast interview Every Path Has a Puddle or Two has some pretty decent Alzheimer’s and life advice, too, if I don’t say so myself. My momma would be proud. I learned from the best.

This poem from Rosemerry Wahtola Trommer really resonated with me.
It’s a Dog’s Life: Lessons from My Dog V (From the Dog II)

It’s a Dog’s Life: Lessons from My Dog V (From the Dog II)

Meg

Hi everyone,

It’s Tucker the schnoodle here again, back by special request from my little hoomans. They like what I have to say. They say I am a 300 IQ doggie, whatever that means.

I feel like I covered the basics in my first post but I’ve grown up a lot since then – I am now almost 16 pounds of sheer muscle and love – and have experienced spring for the first time so, yea, I suppose I have a few thoughts to share. Mostly, my ethos can be summed up by these three ideas some smartie put on the internet:

First off, WOW, just wow, about the nature that surrounds us! I have never seen so many chipmunks and squirrels and bunnies and birds! Such delight. Dead or alive, my investigation skills are fully activated. Sometimes I pick up what I find – dead squirrel, bird wing, hopping frog, beetle in the grass – you name it, I have picked it up. That causes much consternation. I would like to say that I learned my lesson, but being a dog I guess I bet I’ll do it again if I am given the chance. Life is short.

Sometimes I get so excited by all the smells during my investigations that I snort like a pig searching for truffles. Boy, that makes the hoomans laugh and laugh. I look at them with disdain – they can be so immature and undignified. Very un-schnoodle-like.

Lately I have added a new member to my pack – my Grammy! Actually, it’s a whole collection of new friends. My main hooman puts me in the car and we Go for a Ride and then we get out at this new place, which, it turns out, is where my Grammy lives! In my whole life I had only met her once and I was so busy trying to eat all the stuff on the ground outside that I barely noticed her. Now, though, we get to go inside and I think pretty much everyone there loves me. All the way down the hall I hear, “Tucker!” or “Tucker’s here!” They want to take pictures with me and give me pets. Sometimes there are dance parties and I participate. One friend likes to walk me and I let him. They all seem to feel really good when I am there. I think there’s some unspoken language of fur that happens between us. I am not sure of exactly what it is, but I feel like this is an important job. I do excel when I have a job. I may have found my people.

I have gone enough now that I know exactly where my Grammy’s room is and am not even scared of riding the elevator anymore. A little secret, though, just between us? I don’t think my Grammy likes me very much. I get this vibe that she prefers her stuffed dog to me. Never fear, I’ll keep trying, but I get the distinct impression that my kisses are not so welcome. It makes me want to try harder, of course, and some days are better than others. Isn’t that life?

I’ve also noticed that my main hooman is much better on our walks. She doesn’t hold my leash nearly as tight as she did after I got attacked. I mean, I can tell she gets nervous when other dogs are off-leash and come running up to us. I bark extra for those meetings, which she really does not seem to like at all. She tells me, “Read the room, Tucker!”, but just like with my Grammy, I’ll keep trying. Persistence is the name of the game. My main goal is to protect my hoomans. And dispense love. And eat the odd dead thing I find in the road. It’s that simple.

Within the One Hundred Year Flood

Within the One Hundred Year Flood

Meg

I kept a chronicle of what we did over the past year so that I don’t forget what it was like to live through essentially a 100 year flood (please tell me that this won’t happen again for another 100 years).

As soon as normal hits, it’s easy to forget the details of what is now mercifully becoming the past. March, April and May 2020 were some of the longest months known to man. And yet somehow the last year is already a bizarre blur. It doesn’t feel like it should be blurry because we were all focused on the most minute little things to keep from going completely insane, but somehow it all just blurred together. Meanwhile, March, April and May 2021 have rocketed on by. I am left gasping for air as I watch time wink and salute as another year of my life speeds off down the highway.

Remember washing groceries and I don’t mean just the fruit and veg? Being afraid of the mail and packages because we just didn’t know? Cooking ALL THREE meals EVERY. SINGLE. (DAMN). DAY with no merciful end in sight? I tried to embrace it, but I could barely deal.

Here are a few highlights (lowlights?):

Day 20 – March 31, 2020 – So here’s a remarkable thing about this social distancing…it’s ridiculously busy in such a weird way. I missed 16 whole days of writing this journal. How is that even possible? Well, I’ll tell you how it’s possible! Because life right now is this twilight zone of surreality. I have been teleported to the 1950s and spend most of my waking hours cooking, cleaning, doing laundry, working with kids on one thing or another, and curating precious items for our consumption or comfort (groceries and paper towels in particular).

It’s funny already to look back at the first three days. Maybe those were the hardest. No, probably not. I think the first two weeks were just a rollercoaster of emotions and moments. Suddenly everything on our calendars was being canceled. It’s both an eerie feeling and also really freeing to just go through your calendar and cross everything off – hockey games, swim practices, play dates…some of that stuff was just filler, but some things, things we had planned for a long time or were really looking forward to, are harder to let go of.

I am looking at my calendar now to jog my memory and am laughing that I literally whited out or deleted anything that had been on there. It’s like when I lived in Madagascar and they would just change the departure time of a flight by erasing it on the chalkboard! Ha! The plans you didn’t do don’t exist, I guess. Which is true enough.

That first week, March 16-22 (because I fast discovered that weekends when you have no plans or anywhere to go are just like any other day), we adhered pretty closely to the routine I set up. It seemed to help the kids structure their time and energy. When I call it “homeschool” I should be clear that it’s more an insanity prevention routine than any actual attempt to advance academics. The days are sooooo long with nothing to look forward to and “nothing to do.” I find you have to beat that emotion of “there’s nothing to do” to the punch by sticking to some semblance of a routine.

Day 49, April 28, 2020 – A month ago today, mom started showing COVID symptoms. March 28. She has been sick for a whole MONTH. That’s daunting. It’s been a long month. For both of us.

Seems the neighbors across the street already sold their house. Even in a pandemic, I guess real estate around here is HOT.

Day 50, April 29 – DAY 50! WOAH. That gives me pause.

Day 63, May 12 – Some food prep of note – whoopie pies, auntie anne’s pretzels, and ice cream. ALL HOMEMADE. Mom’s birthday. And also TWO FULLS MONTHS since quarantine started. Incredible that she is alive – and WELL (it seems) – to celebrate it. Amazing to see her on Mother’s Day in a drive by car parade. I didn’t think I would likely ever see her alive again when she was so sick. It was amazing to see her, even through a windshield.

Wednesday, May 13, 2020 Spring Observations (To keep my spirits up and focus my attention away from the gnawing anxiety and grief within me, last spring I meticulously observed the changes to my front garden. Usually I don’t sit still long enough for more than a passing glance, but last year I tried to take advantage of the quiet (which, incidentally, in some respects, I miss).

It’s been an allergy storm this week! I guess the pollen is out.

At the same time, we have had 3 or 4 nights with freeze warnings. That’s really late in the season. We even had snow on Saturday! What?!?! May 9.

Despite the cold, everything continues to grow. My peonies are practically growing visibly every day. Same with the bleeding heart. The cherry blossoms have held on during all the cold and wind. They are probably about peak now and the blossoms will start to fall off. The front garden bed is still just green but much more full and lush. I added some phlox and lantana a week (or two?) ago and have a “small shade garden” to plant today. Spring is here!

Day 72, May 21 – I was thinking today how this is supposed to be such a busy time of year and usually we are crawling to the finish with millions of things to do and end of year recitals and celebrations, just wanting it all to be done finally. It starts to get warm and we all get spring fever. And then the buildings start to get overwhelmingly hot and the walk to school gets hot and seeing all the same people over and over gets old and then it’s finally summer break.

This year of course none of that is happening. And it’s sad. Well, part of me is sad about it anyway. This weekend is Memorial Day weekend, traditionally the kick off to summer, but it’s no different from any other day or weekend this year…well, that’s not quite true. The warm weather definitely helps and changes the pace of the day and the frame of mind. The kids are most recently keeping busy with remote control cars. We are getting some water guns and have a stockpile of water balloons for backyard summer fun. We continue to wipe down anything that comes into the house with masks and gloves on and rubbing alcohol. Slowly people are starting to get out more with masks on and keeping their distance. Those are the new guidelines as of May 18 when the state started to loosen restrictions a little bit. I immediately was flooded with emails and phone calls to reschedule dentist and doctors appointments. Not there yet. We shall see!

Day 79, May 28 – First “play date” in months walking and rollerblading with friends. Amazing!

I have about 80 miles left to drive on my current tank of gas, which I last filled on March 9!!!!

Day 80, May 29 – Made chocolate ice cream today – YUM!

$1.93 per gallon of gas right now at the gas station nearest to us.

May 9, 2021 – Mother’s Day 2021 – I got to actually be with my mom, not over facetime, not from 6 feet away, not through a car window. So many times over this past year I thought this would never happen, that I would not be able to be with her while she was still alive again. Yet here we are.

Gas is about $2.89 per gallon for the regular stuff. Always fun to track commodity prices over time. And, yes, my garden is growing again and I am delighting in all the things I (apparently) planted last year that I forgot about in the intervening months! Life springs forth anew!

May 25, 2021 – George Floyd. RIP. Has it really only been one year?

A friend read this poem to me when my mom was hospitalized for her second stint with COVID complications:

The Promised Garden

There is a garden where our hearts converse,
At ease beside clear water, dreaming
A whole and perfect future for yourself,
Myself, our children and our friends.

And if we must rise and leave,
Put on identity and fight,
Each day more desperate than the last
And further from our future, that
Is no more than love and respect shown
To all blocked from the garden that we own.

There is a garden at the heart of things,
Our oldest memory guards it with her strong will.
Those who by love and work attain there
Bathe in her living waters, lift up their hearts and
Turn again to share the steep privations of the hill;
They walk in the market but their feet are still.

There is a garden where our hearts converse,
At ease beside clear water, dreaming
A whole and perfect future for yourself,
Myself, our children and our friends.

~Theo Dorgan

To be continued…

It’s a Wonderful Thing, A Mother

It’s a Wonderful Thing, A Mother

Meg

A print of James McNeil Whistler’s Mother hung on the wall of my childhood home for as long as I can remember. I always found her kind of creepy, to be honest, and the poem by Baroness Von Hutton affixed below it within the frame always felt so dark. 

It's a wonderful thing, a mother;
other folks can love you, 
but only your mother understands.
She works for you,
looks after you,
loves you,
forgives you anything you may do,
understands you, and then the
only thing bad she ever does to you
is to die and leave you.

- Baroness Von Hutton

Of course since those days as a little girl staring up at this portrait and trying to understand it (and still trying to understand why it hung in the bathroom of all places), I have become an adult, and a mother, and my mother’s caregiver.

It’s been one helluva year for me and my mom. We have walked the line so many times between life and death. And she just keeps coming back dancing and laughing. Just this week she was hospitalized again. I found myself racing to her side, grateful to be freshly vaccinated but afraid I had missed my chance to be with her while she was still alive after over a year of distanced visits and screens between us. And, you know what? Even though there is only one way for this story to end, even though I have already lost so much of her to Alzheimer’s, the grief that overcomes me at intervals when I face the prospect of losing her remains immense. The words of Baroness Von Hutton resonate more clearly by the day.

Distanced Visits
Reunited!

My mom (and her sisters) are my guiding lights. I have noticed especially over the past year of isolation and quiet that my most profound and impassioned writing tends to be reflections on my relationship with these women. A Tribute to My Biggest Fan, Nancy Waddell, Practically Perfect in Every Way, Clips

I think about my mom and her two sisters (“Sisters, sisters, there were never more devoted sisters” is the Irving Berlin song that accompanies my memory of the three sisters together, they dancing to the beat and laughing) as I make my way through this world. And I try to channel Nancy and Ellen’s wisdom as I care for my mom.

Nancy and Beth
The Sisters and Their Mom
Ellen, Beth, and Nancy

I have begun to recognize more fully how these women were my champions throughout my entire life; how they showed me by their example what it is to be a strong, courageous, compassionate and caring person; how they showed up over and over again at ballet performances and soccer games, at Thanksgiving dinners and music recitals, at the hospital the day my kids were born. As I wrestle with the phone calls and texts and times together that I miss, though they are gone (or gone in most ways, in my mom’s case), they are always with me. They are a part of me.

I’ve got all of this on my mind, swirling in these emotional crescendos and troughs, when the MAIA Impact School (which, if you don’t remember, is what inspired me to find my voice and share it by starting this blog) announced it’s Nim Mama (“Great Mother” in the Katchiquel language of Guatemala) scholarship. The concept is centered on honoring our mothers and the collective strength, beauty, and transformative power of mothers the world over by investing in the education of an indigenous Guatemalan girl. The images of these pioneering, brave girls with their mothers at their side brought me to bellyaching tears. In these images I could see my mom and my aunts standing beside me, or pushing from behind me, saying, “Go. Be brave. Do great things.”

https://www.maiaimpact.org/nim-mama-event

This campaign renewed the call of these female pillars of my life to channel their strength and rise up to be the courageous, bold, passionate, brave woman they showed me how to be. I am living their values and honoring their legacy by returning the devotion my mom showed to me in my caregiving for her and passing the gift of their strength and love onto my children, both my daughter and my son.

This Mother’s Day, I will ACT for change in their names. I am investing $3,000 in MAIA’s Nim Mama Scholarship Fund, $1,000 each in honor of Ellen, Nancy, and Beth, the fiery, loving, devoted, caring, amazing women who paved the way for me. I can’t think of a better way to honor them than to live their values by working to create a more equitable and just world and launching the next generation of Girl Pioneers to pursue their dreams.

Join me April 29 for the launch event to learn more. Find your voice! Empower another to find hers!

Life is short. We don’t know when our time will come. Make – and be – the change you want to see in the world. Now.

Go out there and get after it!

This Year We Loved – Fiercely

This Year We Loved – Fiercely

Meg

For Valentine’s Day, the two Girl Scout troops at my daughter’s school made cards for the residents at my mom’s assisted living home. In addition, a friend’s daughters, who taught themselves how to make hot chocolate bombs over the past month, contributed 48 of their combustible confections as well as gift bags and cards for the staff. The bounty of goodness and love was breathtaking.

Valentine’s Day, typically, is one of my least favorite “holidays.” I don’t generally take kindly to prescribed displays of affection or gift-giving.

But, this year, my Hallmark-holiday hardened heart was cracked. This year, the idea of showing love vastly, abundantly, and against all odds felt genuine and truly necessary.

This past year, love was all we had much of the time, and it both carried us through and broke our hearts.

This time last year we were just hearing reports about some virus in China that was killing lots of people. Maybe it had already moved to Europe by now, I can’t really remember. I could look it up, but everyone already knows the story anyway. What I know for certain is that from my vantage point on the East Coast of the United States we could see something brewing on the horizon, but it still seemed pretty far off, at least to those of us who are not epidemiologists.

This time last year masks were not a thing and PPE was not a term bandied about by non-medical people. This time last year you would have been hard pressed to get a bulk order of PPE. Or at least that moment was coming soon.

This time last year I can hardly remember Valentine’s Day. Strike that, I can’t remember Valentine’s Day at all. Why would I? Remember, Hallmark-hardened heart and eye-rolling are my game. But I know that within a month we will cross the year mark of when the world here turned upside down.

The last day I visited my mom in person and hugged her with reckless abandon was March 9, 2020. I thought I wouldn’t be able to visit for a couple weeks and then it would be over. I could never have imagined all that has happened this past year coming to fruition. It all seemed so unlikely and hyperbolic. The energy felt like the hysteria before a big snowstorm when grocery stores sell out of eggs, milk, and bread as though we have never seen snow before and plan to survive the end of days on French toast.

In the end I wouldn’t visit my mom for months after March 9. In late March, COVID-19 swooped in. She and many staff and other residents were caught up in the storm. When visits were no longer allowed, staff facilitated facetime calls. When she was alone in the hospital battling COVID and it looked as though she might not make it, an angel nurse risked her own well-being to visit her and tell her explicitly that my brothers and I loved her and hadn’t abandoned her. When she eventually returned to her care home on hospice, with a pulmonary embolism and not eating or drinking, the staff not only continued to show up, but showed up with heart, compassion, and love. Not only did they nurse her back to health with Boost protein shakes and cookies for breakfast – whatever it took to get calories into her – but they sang with her, danced with her, honored her, and helped her reclaim her sparkle.

When the storm came, and every day of the year since, the caregivers at my mom’s care home dug deep, dug in, and showed up in myriad courageous and unexpected ways. I know this has happened in other assisted living homes and other places as well: parents who are juggling kids at home as well as work, and are struggling with both; teachers who show up to teach, despite being scared; doctors and nurses who work shift after grueling shift in the ER and on the COVID floors; orderlies who clean what we can’t even imagine; grocery store employees; delivery drivers; pharmacists. So many people have shown up, again and again and again, because they knew that people were counting on them, depending on them, and that we would more be vulnerable without them. I look at the faces of my mom and her neighbors and I say thank GOD for those who take care of the vulnerable among us. Thank God they step up every day, but especially every day of this past year of horrors and extraordinary challenge.

Fierce love. That’s what this year has been. A year of loving fiercely and courageously and doing the best we can.

This year, love needed to be celebrated in a BIG way. This year, love has been the focal point of our very survival. This year, love not only wins, it is a triumph.

Awesome Hats by Kitr Knits

Daily motivational quote by Sailors Sweet Life

Oodles of Valentine’s cards by the Girl Scouts!

Combustible Confections by the Gauldie Girls!

Photos by the Falls!

Smiles and good vibes by me!

So Much Still to Teach

So Much Still to Teach

Meg

She would laugh that we were so worried. I can hear her voice in my mind saying, if she understood, “What? About moi? Ridiculous.” She would probably be upset that we even sent her to the hospital in the first place. She is more of a stick-it-out-on-your-own, “I’m not sick, I just don’t feel well,” kind of person.

March 28 to June 5, 2020. That was the duration of my mom’s journey with COVID-19. She went to the hospital with gastrointestinal symptoms. We expected her to get fluids, be monitored for a little while in the emergency room, and then be sent home. Instead they tested her for the then recently arrived COVID-19, which I shrugged off as ER hypervigilance (leave no test un-run!). If only I could be there, I thought, I could explain to them what she can’t, that she always has a little cough and the sniffles. It’s nothing to worry about.

Her positive test result stunned us and resulted in her prompt admission to the hospital, where she tumbled into the black hole of a blossoming public health crisis and a rapidly filling hospital. She used to tell me not to set my expectations too high because then you just invite disappointment. When I heard “COVID positive,” my expectations were grounded pretty firmly in reality. 

She endured 2 separate hospitalizations (I wrote about the first one in a HuffPost essay – ironically, it was published the day she was sent back with secondary complications). She ended up spending 3 weeks total in the hospital. She didn’t eat or walk for weeks; had pneumonia (mild, mercifully) and then a pulmonary embolism and thrush. She was poked and prodded every which way and was generally miserable and confused. We eventually made the decision to discharge her from the hospital on hospice with the goal of getting her to a situation where she was comfortable and surrounded by people who loved her (even if I couldn’t be one of them because, COVID, which is pretty much the answer to any question of this dystopian existence anymore). We hoped that with one-on-one attention in a familiar setting someone could get her to eat. And we were prepared, if not, for her to leave this world in peace and comfort.

It was a long, long road full of Boost protein shakes and brownies for breakfast (for her, and, some days, to be honest, for me, too, because, well, I had to find comfort where I could). It was days of phone calls with doctors and nurses and hospice workers and chaplains and family and funeral homes. It was a nurse praying with her as she lay quietly in her bed, telling her we loved her even though we couldn’t be there. It was short Facetimes with my mom and the aides working with her, the Sound of Music or My Fair Lady playing on her CD player in the background. It was texted images of her sitting in a wheelchair getting her nails done or painting during a group activity. It was videos of her shuffle-dancing around the dining room, supported by an aide, honoring the woman she was and infusing joy where they could into her life. It was reports about her learning how to walk again, first with people supporting her on both sides, then, slowly, a few steps on her own. It took about 6 weeks for the odds of her making it through this illness to shift in her favor. She doesn’t remember any of it, which may have been her saving grace. Because she has Alzheimer’s, she lives in this exact moment, and then this one, and then the next, with no reference to the past or the future.

Through, and despite, it all, she exuded her characteristic grit and indefatigable spirit. She gave my brothers and I fatigued smiles through the Facetime screen, her inner spark sometimes igniting in her eyes through the otherwise wan expression on her face. More recently we have received videos of her humming a tune and dancing down the hall to the beat of her literal own drummer. Her laughter echoes like the first birds of spring after a long winter, issuing robustly and sweetly through the air, quickening the rhythm of my heart and flooding my soul with warmth. I only just realized as I listened more intentionally to her laugh, absorbing more fully this sound that so recently I thought I would never hear again, that her laugh echoes the sound of my own.

I guess it wasn’t her time. I guess she still has more to do here on this Earth, more to teach. I don’t know what else to say about how close we walked to the line, and then how she suddenly walked it back. She would say, “What did you expect? Of course I lived. Maybe don’t take life so seriously. Maybe don’t count me out just because the prognosis looks bad (really bad). Now tell me about you. How are you?”

I find myself speechless at times in her presence, my mind bending as I try to reconcile what happened to her and to our family during those months and the vast loss of life during this COVID outbreak, with her physically sitting there still with me, smiling, laughing, and full of LIFE. We sit outside on the patio at her care home admiring the trees and sky, listening to the river, singing or just sitting quietly. She still appreciates beauty in the world: a clear blue sky, a gentle warm breeze. She will close her eyes and tilt her chin upward, breath deeply, and smile broadly, completely at peace, 100% her authentic, younger self, the mom I remember. Post-COVID, she is back to walking unassisted, dance parties, eating, singing, giving back rubs, smiling, and laughing – lots of laughing. She doesn’t have much to say, and doesn’t understand much of what I tell her, but she knows I am someone special to her. She lights up like it’s a surprise party every time an aide walks her outside and she sees me standing there. On some biological level we are still connected, even if she can’t remember my name. She would like to give me a hug, reaches for me, but we sit and tap our toes together instead, a small physical connection that doesn’t potentially jeopardize either of us. COVID kisses. It’s the best we can do for now.

I recognize that I am one of the lucky ones. My mom returned to me from the brink, and she returned bubbling with happiness and love to share. She still has so much to teach, not only to me, but to all of us: about enjoying the simple things in life, like a warm breeze and a blue sky; about what it means to be fueled by love, to be guided by an inner joie de vivre; about dancing and laughing through life, no  matter what; about resilience and grit and never, ever counting someone out or giving up, no matter the odds; about how deeply the love between a mother and her child runs, and how it’s still recognizable when all else is lost.

When it comes time to say goodbye, whenever that may be, I hope I will be able to be there and to hold her hand. In the meantime, I am counting my blessings and following her lead: taking a deep breath; embracing unbridled joy; seeking daily, small moments of happiness; loving my family and friends hard; smiling and laughing often; feeling grateful for every day I still have mom on this Earth; and living as close as I can to this very moment, and then the next one and then the next, moment to moment to moment. Even now. Especially now.

My mom survived COVID-19 and has lived gracefully with Alzheimer’s for over 7 years. She still exudes love and compassion for others. She still smiles and laughs. She is still the life of the party. She continues to be an example to us all about a life well-lived, no matter what. She would say, “This too shall pass.” And it will. 

Mask up. We got this.

#Youwillbealright

#Wearethesolution

#Wearamask