Adapt Adapt Adapt

My mom is losing her speech. It’s noticeable. Actually it’s been noticeable, but now we talk about it. Driving home from our visit on Sunday, Joey and I talked about it. That’s how things happen with us, and I suspect we aren’t that different from you. We notice something. Then we notice it as a pattern. Then we worry about it, and what it means. Then we eventually talk about it.

Something “is” for a long time, but it’s not until we talk about it, out loud to each other, and agree on it, that it “really is.”

And I get why that’s true. Sometimes, as irrational as it is, you want to just live in the space between noticing it silently and noticing it out loud, because once you notice it out loud, you can’t “un-notice it.” And once you notice it out loud, and you confirm that it’s something bad, it means you are once step closer to whatever the next thing is.

For right now it’s losing speech. Not talking…talking in a really loud monotone…slurring sounds instead of making words.

And to sit with that is really awful.

Yet there is something wonderful happening as well. Mom is writing. There is a notebook where the momsitter helps her write notes to me and to Joey. They are short sentences, maybe 2 or 3 per note, but much more than we’d get in conversations with her now.

Adapt. Adapt. Adapt. Decades from now if you ask me what will still have stayed with me about this journey, what my mom taught me about living, it’s about how amazingly adaptable we are. Each loss means a some new way of adapting to it. Some new way she inspires me.

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Strawberries

When I was a kid I didn’t like strawberries.  I don’t know why.  Maybe it’s that sometimes hours after you eat them you’ll still find one of those little seeds in your teeth.  More likely it was because strawberries are ridiculously unpredictable.  From the same little carton you could have as many sweet ones as you do tart ones.  And there seems to be no real formula for predicting sweetness just by looking at them.  I liked sweet strawberries, not tart ones.

Sometimes when I’d stay at my grandmother’s house overnight she’d open up one of those little rectangular frozen tins of strawberries that had been packed with sugar and we’d eat them when they were half thawed and half frozen.  I’d eat the presweetened strawberries but I avoided the fresh ones at all costs.

My mom loved strawberries.  She’d eat the fresh ones.  Even crazier, she was the person in the house who would eat the pink stripe in the Neapolitan ice cream.  I had literally been known to go into diva histrionics if strawberry ice cream was served to me with the chocolate.  It just wasn’t going to happen.  

Now I love strawberries.  Really any kind of berries.  Blackberries are my favorite.  I don’t remember when I converted from berry hater to berry lover either. Like so many other transitions I’m sure it involved a protracted teenage apathy period.  Mixed berries and greek yogurt are my weekday breakfast.  I don’t like the yogurt much, but I love the berries. 

My mom doesn’t remember that I had a strawberry change of heart.  I feel like that’s a very mom thing to remember and to talk about.  The fact is that as I lose more of my mom, I lose more of the strawberry moments.  That’s one of the worst parts of the disease.  

My brother has a wife that he can tell these things to and she remembers.  That’s part of the spousal obligation…you become part of the other person’s permanent record.  You remember the catalogue of their existence in details that a best friend doesn’t even need to remember.  You remember stories about changing your mind about strawberries.

I hate that I am losing that person who remembers me as a picky eater.  Who remembers it wasn’t just strawberries, it was [insert long list of foods I rolled my eyes at].  

But I wrote it down now.  Strawberries.  And one day I’ll tell someone about my berry transformation and they will remember it.  Because the little things matter.  

Momsitting, revisited

So if you’ve read this blog before, you know that we looked at different home care providers and invested in a momsitter to come to the nursing home for 3 hours a week, 3 times a week to spend time with mom.  Whatever they want to do, read, listen to music, work puzzles, etc.  We are paying for someone to be 100% focused on mom and what makes her happy.  

It’s had a huge impact!  She reads now.  She writes now.  She’s up and moving and doing things.  It’s been so successful that we have added a second momsitter who comes twice a week.  This time instead of a service, we hired a staff member who works in the home to come on her days off.  

Things couldn’t be going better.  For one, mom is engaged and active at a minimum five times per week.  Six if you count when we visit on the weekend.  So it’s got obvious benefits for her. For us, it means less worry about what she’s doing and how active she is.  It also means less guilt around having our own lives in addition to playing the roles of son and caregiver.  We have found two other people to regularly show up to love and care for mom.  

An unexpected thing that’s happened is it’s allowed us to be connected to her life in a way we weren’t before.  Each day the momsitter from the service is there, she writes what they did in a notebook that we can read on the weekends.  Each week the momsitter we hired from the home sends me an email of what they did so I can use it as a billing invoice.  Both things allow me a window into mom’s day to day life.  A way of being there when I can’t be there.  

Some excerpts from her weekly activities:

week 6. day 1: went to activities listened to music. worked on puzzles,brushed teeth,did some identification cards,read the newspaper,walked around a bit and looked at pictures.  day 2: today we went to activities,looked at newspaper,colored,curled her hair and walked alot,brushed her teeth and wrote some too.

week 3- day 1. we did puzzles,went to activities and listened to music,colored a pic for facility,walked,brushed our teeth. got our dinner at 515 and ate. day 2. puzzles,played fish,listened to radio, other aide gave her shower i kept her busy singing songs in shower. did her hair and brushed her teeth and folded clothes.

week 4 day 1. we had makeover day, curled her hair,fingernails purple,soaked and lotioned feet,played cards,puzzles, and wrote 2 notes. day 2. today we did puzzles,picked songs off cds and sang them. she really liked singing take me home country roads. brushed teeth,went thru drawers and organized,hung up shirts,walked some,wrote some more and she read your letter you wrote again. the weeks fly by she seems to like the visits. 

 

Mom, Inc.

Along the journey of becoming a caregiver, there are lessons to learn that change the way you see the work. One such lesson is learning to see mom as a person and as a business.

The person is easy. My mom is this human being who needs what we all need…love, food, shelter, kindness, affection, patience, support. For a long time this seemed like the focus of all the work. If I could give more love, then the situation would get better. If I could be more patient, things would get easier. If I could be kinder when things were tense, everything would go smoother.

A new reality hit for me and my brother in the last year. Caring for mom the person is the significant portion of the work, but it’s not the only work. Focusing only on caring for the person we neglect the infrastructure that allows the person to exist. We also have to tend to mom the business.

Mom the business works like other businesses. It starts with a mission, “Keep mom healthy, safe and happy.”

There is an accounting department. We track money in, and money out. We maintain multiple bank accounts. We pay bills. We project expenditures against cash flow. We forecast need. Hard copy files are kept. Electronic files and spreadsheets are uploaded to cloud storage for both users to remotely access and update.

We have a legal department. There are forms to file to comply with Social Security, Health and Human Services, Guardianship, Conservatorship, and Medical Power of Attorney.

The business has a customer service department that attends care meetings, transports to doctor’s appointments, and does all the shopping for clothes and gifts.

This year the business expanded to hire a momsitter, which included vetting different service providers and contracting with one to visit three days each week. After success with one momsitter, the business hired a second momsitter, one of the nursing home staff to come in on two of her days off each week.

The business has conference calls and staff meetings between business partners (my brother, sister-in-law and me.)

Mom the business gets our energy, our focus and our commitment. It creates the system that allows for us to support and care. We clock in to business mode and get the work done, so that when we clock out, we can enjoy the whole reason the business exists, mom the person.

What the Flu Outbreak Told Me

First visit of the new year and the home is on lockdown! Flu quarantine. When I arrived this morning a bright red sign on the front door warned that several residents had the flu and that residents were quarantined to their individual halls. Visitors should consider whether or not to visit given the increased risk of illness. There were masks provided inside the front door and visitors were encouraged to wear one.

I’ve had my flu shot for the year so I was considering myself safe inside my force field of preventative wellness. When I walked in, the kitchen staff and the nursing staff were all wearing the masks. Someone offered me a mask. I said no thanks. I’m only visiting one area and I’ve had my shot. She said all these folks had their shots and they still have vomiting and diarrhea.

AND THAT did it. Two things I hate separately that are exponentially worse when combined…vomiting and diarrhea. So I put on my blue mask and wore it the entire time!

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Luckily the flu has not hit mom’s hall, and everyone was hopeful it would stay that way. She was happily reading her Maya Angelou book while Terminator 3 was on TV beside her. I love how much those two don’t go together and yet it’s exactly what she might have been doing 10 or 20 years ago at home.

My mom has always lacked conventionality. At times I’ve rebelled against it. As a teenager i could get so angry that she wasn’t like other moms. When her illness started but before we knew, being so mad she wouldn’t just get her life together and be normal.

At times I’ve benefitted from it. She got a passport and flew halfway around the world to visit me in the Peace Corps, eating things she couldn’t recognize, doing a home stay with my host family, and letting go of her normal life to experience my foreign life for herself.

And that moment today in the center of the flu outbreak, when I looked at her through her doorway, book in hand and movie playing, I thought about how one of the best gifts she ever gave me was an example of living unconventionally.

Throw out the rules.
Be different.
Do right by people and at the same time do what you want.
Let it be messy.
Let it be wonderful.
Live YOUR life.