Life Without a Net – New Lessons from Later-Stage Alzheimer’s

Life Without a Net – New Lessons from Later-Stage Alzheimer’s

Mom’s been living with Alzheimer’s disease for somewhere between 11 and 14 years now, depending on who you ask. Last week, our full-time care partner dad got sick. Really sick. Fever, intense pain, not sleeping, difficulty moving, back-to-the-doctor-three-times-in-five-days sick. Nothing drives home the 24×7 work it is to be an Alzheimer’s care partner like the care partner himself becoming too ill to do anything. Attention full-time care partners! If you’re struggling with explaining how difficult round-the-clock caregiving is to family and friends, I highly recommend this: get stay-in-bed sick for a couple of weeks (or, take a two-week vacation. Either way, it helps us all out, believe me.)

This week highlighted all of the things Daniel and I were ready to help with and what we weren’t ready for. In a drop-everything-and-move instant, we took over errand running, grocery shopping, and meal planning and preparation. We took over doing laundry. We helped with activities, distractions, and emotional support for mom, whose deeper-than-ever empathy causes her to suffer when dad suffers, and we bumped up our emotional support for dad as well, who struggles with guilt about needing help in addition to being so sick and worrying about mom. We took over straightening up the house and taking the garbage out to the curb.

Fortunately, they recently moved into a neighborhood where weekly housecleaning is part of the rent, so that extra support was lovely. Perfect timing! Mom stepped up too: she cleared the table, dried the dishes, threw toys for the dog and entertained dad, and she got herself ready for bed and ready for the day (things I know he often helps her with). The days he had a fever she checked his forehead every 30 to 60 minutes, all day. Her simple acts of touch and obvious empathy doing more for him, I suspect, than what we did.

What we weren’t ready for

But here’s what we weren’t ready for:

    1. Detailed medicine and vitamin routines. In what combinations and at what times of day do mom and dad take their medications and vitamins? Thanks to dad, we have a list of all the vitamins and medicines they take, but the list didn’t say… Which ones are taken when? Mom takes pills three times a day and no longer has any idea what they’re called or what they’re for. Also, where do they store the backup pills to fill the 7-day reminder packs? Where do they get them if they run out? Without dad’s help on this, we’d be screwed.
    2. Showering. Mom hasn’t showered by herself in several years. Dad does this with her. Without him to help, we have no idea what to do. How often does she shower? Is this something she’d want my help with or would she actually prefer professional help? They used to shower just once or twice a week, but we learned he’s been showering with her almost every day this past year, because…
    3. Toileting. Mom needs a little help with this, now, too. She doesn’t have accidents, exactly, yet. However, she doesn’t know when to flush anymore. She flushes first. And she puts all wastepaper into the wastebasket instead of flushing it—no matter what. Sometimes poo too. And her wiping skills aren’t what they used to be. Mom and dad have routines to help her remember. Routines we didn’t know. And dad has extra cleaning routines in the bathroom and with the laundry now.
    4. Alzheimer’s support routines. To make life easier for mom, dad does a thousand little things almost without thinking about it. For example, he has a complicated matrix of night lights that are on or off depending on time of day and night. He knows certain TV channels that she enjoys or that don’t disturb her. He has certain things he says, and ways of saying them, to get her to go walking with him or to go out when she doesn’t want to go out but they have to. He keeps silverware and certain condiments on the table, so she doesn’t have to search for them and he doesn’t have to make multiple trips back to the kitchen for them. He keeps certain foods and potholders and even pans on the countertop too, so they’re easily accessed. He keeps other things hidden. Imagine if you had no memory of eating and little ability to feel the difference between hungry and full: it’d be very easy to overeat if lots of junk food was on the counter.
    5. Major plans changing. Mom, dad, and I were supposed to be flying back to South Dakota this Friday so that we can pack up their home there and prepare it for sale. Today it looks like we’ll need to bump out the trip by at least a week. Travelling with mom is hard when dad is well. With dad sick, I don’t think we can do it. We all have to be flexible. My work schedule (brand new employer) and Daniel’s work have to be flexible. Jen and Cam (whose house we are staying at for a few days on route) have to be flexible. Derryl and Jodi (whose house we are staying at in South Dakota on route and who are driving us several hours to their home) have to be flexible. Our doctors have to be flexible. Our family and friends and neighbors have to be flexible. More and more people have to be able to improvise with us on the fly.
    6. A doctor for dad and arrangements for getting there. Dad being dad, mom had an Alzheimer’s expert doctor set up for her 6 months before they actually moved here. She saw him for the first time back when they visited at Thanksgiving. Dad had their housing and banking and even state residency figured out ahead of time too. But he hadn’t set up a doctor for himself. In hindsight, when he set up a doctor for mom, we should have helped/insisted that he get one for himself. When he got rapidly sick last Wednesday, he ended up scrambling to find an urgent care clinic in a city that’s new to him and then driving himself (and mom because she can’t be alone) to urgent care although he could barely walk before he called us to tell us he was sick. He called us from the waiting room. Arrgh.
    7. Accessing money for daily living needs. Mom no longer even has a credit card, which is great because money is meaningless to her. But, when dad becomes can’t-get-out-of-bed sick, how do we pay for their daily food and life supplies? Luckily, dad had enough cash in his wallet to cover this week. And we have a little extra in our account for emergencies too. But I think it’s time to talk to him about getting one of us on their bank account with them. We need to be able to get them what they need, when they need it, at a moment’s notice. If he’d had to go into the hospital this week, or had been unable to give us his debit card info, we’d have been stuck. Thank God we are a family that trusts each other. I can’t imagine what people who don’t trust their relatives would even do.
    8. Dad being utterly overwhelmed when sick. And more honest about how he feels. Dad’s slightly better today, but he still has at least one more week of rest, antibiotics, and pain medication before he’s back to being well. He’s so exhausted, and in daily pain, that he’s now talking about moving mom into memory care sooner rather than later. Ahead of even hiring a professional to come in and help him. This is hard to hear. But it also feels good that dad is sharing his pain, and what he’s feeling, and how overwhelmed he is. He’s aware that she feels whatever he feels—and is concerned about the impacts of his stress and illnesses on her. Also, what he thinks he can do, and handle, changes day to day right now. It feels like hour-by-hour emotional juggling. I’m so glad that we have people to talk to, vent to. And my writing (aka, Lori therapy) and Daniel’s photography (Daniel therapy). And people around us willing to be flexible. I had to change my own doctor’s appointment 3 times this week. Thanks Polyclinic schedulers and doctors! Even though it sucks in the moment, I’m actually beginning to enjoy hour-by-hour juggling. When I’ve had enough sleep, it makes me feel like a bad ass who can handle anything.
    9. Extended time away from our own home. This week we became experts at 5-minute bag packing/living away from our own home/grabbing what matters/leaving everything else behind. We sucked at it the first two times, but by time #3, we were pros. We need so little to be happy and relatively little to get our work done. If it wasn’t for the cats and our own wish for slightly more personal space, we could move in with mom and dad indefinitely given 20 minutes notice today.
    10. Being flexible enough to do this long term—it takes a village. Mom and dad moved closer to us earlier this year, which has been fantastic. We’re able to see them weekly now, play cards, hang out, and help each other out as needed. But we still live 45 minutes apart, because they chose a neighborhood that has assisted living and memory care (for later on) in addition to the cottages they moved in to. This week, dad needed full-time care and a driver to multiple doctor visits on top of mom’s full-time care needs. One or both of us had to spend days and nights at their house. Working together, Daniel and I could just pull off providing this level of support for one week, while still meeting our work obligations and popping home to feed the cats and bring the mail in at our place. I had to cancel several work and doctor’s appointments to make it happen, and Daniel cancelled a bunch of plans as well, but it’s do-able for a couple of weeks. And it pulled forth the question: What would we do if they needed this level of support for a longer period of time? We have no other family close enough to help. It’s clear that we all need to get closer to the people in their new neighborhood ASAP. And become more familiar with the help available there through the assisted living center. It’s also clear that mom’s definitely at a point where she needs a professional care partner we all trust 100% to help with the most intimate of life’s details. Someone who can be there the moments we can’t be: including backing us up if dad gets ill again. Or, it might be time for her move into memory care. It feels early to us, but we intend to back dad on this decision, especially now that we’ve lived in his shoes. Our social butterfly mom will do fine there, too, I strongly suspect. Babies, dogs, cats, and other people with memory issues are her favorite things.

The down side, the up side, and the upside down side

Being an Alzheimer’s care partner is like walking a different circus high-wire act daily, blindfolded, without training, and without a net. It’s all consuming and impossible to describe with words because there’s just not enough time in the day for all the words you’d need. On the up side, your empathy for others expands exponentially all the moments you’re not pulling your hair out in frustration.

This disease shines a light on the weaknesses of our society, our communities, our approaches to health care, our families, and our individual selves. This is a painful thing and a great thing. Because with the light on, we can more fully see what we need and start to imagine something better.

This week, Daniel and I got more insight into what it’s like to be a full-time Alzheimer’s care partner. One week both inspired and exhausted us. And dad’s been doing this mostly alone for more than a decade. He is amazing. He does a thousand little things for mom each day. Things we healthy folks literally can’t even imagine. It’s like being a 75-year-old single parent of a fully enlightened Buddhist toddler on top of being a full-time spouse.

We also gained greater insight into what it’s like to live with Alzheimer’s disease. Mom is amazing. She may not have much memory or speaking ability left, but she is all empathy, all the time. On her own, she doesn’t judge others, period. She’s a joy to be around. She’s happy with what is. It’s only when her care partners are hurting or angry that she feels these things too. In her presence, I become a total bad ass. Because this disease no longer scares me. Or, more specifically, I see no point to being scared in her presence—why transfer my fear to a fearless being who is utterly content with the present moment? From the outside, it may appear that she, or we, are suffering. The opposite is true. Her presence is liberating. It’s totally freeing to live loved for exactly who you are in the moment. To move in the world and live entirely free of negative judgment…

When I walk around town now, I feel like a creature who just alighted on a beautiful new planet for the first time. I look around and wonder about the quiet, hidden bad ass life that I know each human being is living. I gaze into the eyes of complete strangers, feeling their stories, and tears well up in my eyes. Because life, and joy, and disease, and pain, and even death are all amazing. I’m no longer ashamed that life’s pure beauty makes me weep. If anything, these days, I’m more inclined to be curious about why everyone else isn’t weeping right now, too.

What Grief Does

What Grief Does

This is the week
Mom can no longer recall
her own last name
our last name

This is the week
Mom can no longer answer
simple
verbal questions such as
“Do you want a blanket?”
without accompanying gestures and visuals

This is the week
Mom can no longer follow
e
ven the simplest verbal instruction
“Take your sunglasses from him.”
in any environment outside her own home

This is the week
Mom no longer remembers
the words to classic holiday music–
music she’s been singing since childhood–
one of my own deeply loved signs that she is still here…

 

Stop.

Weep.

Sit on the floor in a sunbeam.

Gather selves. Yours. Hers. Ours.

Insist on four long, deep breaths before you continue.

Re-notice.

 

 

This is the week
Mom is here with us
l
aughing at slap-stick comedy
Fraiser’s “Ham Radio” episode on Netflix
with me.

This is the week
We belted out hummed Christmas tunes and invented our own words.
We still know all the melodies, if not all the words.

This is the week
Mom and I remembered the simple joy
o
f window shopping holiday catalogs together.

This is the week
we created collective art:
c
olored pencil on paper.

This is the week
Mom played with Eva the dog
h
eld all the cats purring on her lap
beamed whenever baby Joss was mentioned
.

This is the week
Mom took my fingers in hers
warming both our hands w
hen
our fingers were cold…

 

I love what grief does:

how she widens the
spaces within
so
individual fear
can pour out

how she just keeps leaving
more room
for love

Her Name Is Linda

Her Name Is Linda

My mom Linda was diagnosed with Alzheimer’s disease by a doctor in 2007. She was just 60 years old. Mom, dad Jim, sister Jen, and I all knew that something was going seriously wrong with Mom for several years before that diagnosis. Memory troubles showed up. Anxiety and depression showed up. All new to her. More significant personality changes, such as not wanting to talk on the phone with us anymore, not wanting to visit Jen and me anymore, not wanting to do many of her favorite things, and avoiding spending time with other family members, friends, and large groups of any kind. She began spinning in worry about simple things, such as spending hours worrying that she would forget to feed the dog at 4 p.m. In those early years, worry spinning began causing her to repeat herself: such as asking me 15 times, in 30 minutes, to make sure she didn’t forget to take a bottle of water into the theater with her.

The more we read about the disease, the more we suspected Mom had Alzheimer’s. Even so, it took us years to finally get her to the doctor for that official diagnosis. She was remarkably sly at avoiding that doctor visit, including cancelling appointments behind Dad’s back: another completely-not-like-her thing to do.

Back then, I was terrified and felt utterly alone. I think we all did. And why wouldn’t we? In my country almost nobody is in a rush to diagnosis this disease: not the people who have the disease, not the people who love them, and not even many of our doctors. As a country, this disease terrifies us.

Fast forward to the fall of 2015.

We are an entirely different being today: a collective being. Reflective and thoughtful. Calm within storms some days. Creator of storms other days. Able to drop worry, stress, fear, ego, and even people, if need be, in the blink of an eye. We’re becoming quite the bad ass together. More fluid and funny too. I’m a creator now: poet and artist in addition to writer and editor. My sister recently became a mom. We even speak a wordless new language now. Speak collectively out of habit. From my perspective today, the difficulties we experienced before are mostly symptoms of trying to tackle change and chaos, and trying to fix unfixable problems, as lone individuals. The result of standing in a river alone and trying to make what is right now back into what used to be. How impossible and exhausting that was.

Some people receive long, healthy individual lives to become something more than they once were. Others, like us, receive and accept diseases like this: diseases that require us to become something new, something different, and something more than individual selves each new day. This disease surfaces our collective selves. Our dragon selves. Our river selves.

So yes, as a dragon/river/human/community hybrid being, this disease doesn’t terrify me now. Not anymore. Even though I myself may end up with it as soon as 10 years from now. Thank you Alzheimer’s.

In August I was sitting outside a coffee shop, in the warm sun, having lunch with a friend who is also an Alzheimer’s care partner. In addition to talking about our marriages, food, the wild world of indie authoring and self-publishing, our mid-life aspirations, and our families, he brought up the subject of euthanasia. We talked about when and if our loved ones might make that choice and when and if we, ourselves, would ever make that choice. I’ve never had this conversation with anyone: not my husband, my parents, or my sister. It was a deep, lovely, moving, weird, and fascinating conversation, woven into and around talk of annoying husband quirks, great new food spots in the area, and the stubborn expansiveness of mid-life waistlines.

As I drove home, I realized that I’d just had yet another amazing, life-affirming conversation that I wouldn’t have been strong enough to have before Alzheimer’s disease entered my life. With a close friend I may not have had without this disease. And, even more amazing, that I’d just spontaneously taken a 4-hour lunch break out of the middle of a glorious, sunny work day. The old Lori would never have done that. Never. Thank you Alzheimer’s.

Our new book, The Grace of Dragons: Receiving the Gifts of Dementia Care Partnering, is another gift of our experience. A gift born of finally learning to slow way down and make time for what matters most. It is a collection of essays and poems that I wrote between 2012 and 2015 — the years my panic about Mom’s disease had subsided enough for me to notice beauty again. Create beauty, anywhere and from within anything. The essays and poems have been grouped in the book by one of the gifts they share in common, out of chronological order, so dates, times, and world events may seem a bit jumbled and confused. That’s ok. In this world, the gifts are the focus. Everything else is background noise.

Thank you Alzheimer’s.

Welcome to the Void

Welcome to the Void

so welcome here
sitting in the sun at a rusty table
lunch with caregivers
in front of Useless Bay
sparrows bathe in dust at our feet
fluff and primp without shame
we admire the audacity

together we swing across Alzheimer’s
through marriage troubles
creative projects
travel
waistlines
back into Alzheimer’s seamlessly
belly laughs to tears
nuts and bolts to wild imaginings
pain, fear, and giggling back out of ourselves

someone says “I can see when she is leaving this space-time continuum”

I think “Yes! That’s it!”

our grateful multiselves
grateful we don’t have watch this process from a distance
on the Sci Fi channel
captive to the imagination of strangers

we live this. we who were
born to be space travelers
born to be many
born to weep together publicly
born to swing across space beyond time within selves

content with patchwork ships of friends and duct tape
we have all the time in the world here
I notice now
just home from a 4-hour lunch outside space time self
yet still entirely home
the void, chaos, the space between us, emptiness herself is home now

I am welcome here.
No, that’s not quite it, space travelers.

here, I am welcome

so welcome, friends

welcome to the void

Talking with Neighbors

Talking with Neighbors

I was telling my neighbor how much I appreciate the multigenerational knowledge and friendship in our new (to us) neighborhood: a rare gift—at least in my world— people holding a 6-generation understanding of a place. He said he appreciated it too and also loves that he got to be alive in the 1960s: the last decade that our country had fully functional small towns where everybody made something, fixed something, shared something, and we weren’t dependent on big distant corporations and Dairy Queen back then.

My neighbor said that at his age he’s come to value the tribe here. What our political differences happen to be, matter far less now. What any of our divisive differences are, matter far less now. You become more curious, he said: What is this tribe here about? And what am I in this tribe? When you’re my age, he said.

And my age, I thought.

I mentioned that my parents just picked a town because it’s close to us, though thousands of miles from their heritage home. Plus there are three credit unions to choose from, which makes bank-hating dad happy, and a Subway sandwich shop, which makes mom, who has Alzheimer’s disease, happy. There she still knows the menu, ingredients, and the process plus she loves their raspberry white chocolate chip cookies. It’s one of the few restaurants left on earth in which she can relax, enjoy life. The neighborhood they picked has independent living cottages + assisted living + memory care: the trifecta of awesomeness from their new perspective that and there’s a Walmart just down the hill from their new place so they can easily get inexpensive prescriptions.

Lately I’ve been dropping the need to be sad or worried or mad about mom and dad’s radically different selves and priorities now. Together we’re fine most days. Beyond fine. I’ve lately been dropping my own need to hate Subway and Walmart: not that I’m a patron of either when mom and dad aren’t around (my ego would deeply like you to know).

Frankly, I’m in awe at the glorious simplicity of their lives now.

Where: small loving family + supportive neighborhood + nearby credit union + Subway + Walmart = pure contentment and peace

And I’ve been shifting into the growing simplicity of my own life.

Where: the universe giggles while a progressive, Walmart-hating daughter openly admits Walmart’s place in her own beloved parent’s current happiness.

The world is not as simple as we would like it to be.

Then again,
it is simple here walking
talking with neighbors.

Becoming Magic With Her

Becoming Magic With Her

I love Alzheimer’s

when mom looks into my eyes
says “My baby girl. I love you.”
twinkles
hugs me close
she lifts the world to my lips
pours gratitude through me

inconsequential then
that names are dead
past is gone
old us drowned

we float happy here

no longer up to us to judge or fix others
worry needlessly
fret about what we don’t have
who we aren’t
carry world weight
harbor regret

we are free together
entirely
every moment I let us be

so I let us be

becoming magic with her