Hey friends!  We’re almost there – launching “Demented:  The Podcast” mid-July, a podcast for all of us taking care of our Elders.

What’s in it for me, you ask?  EVERYTHING!  This podcast needs your input.  I know what’s hard for me to get done, as a caregiver.  But there are million other stories, solutions, experiences that you can share … and maybe I can find some experts to help us with.  So – go to the top of this blog and you’ll see a “contact” button.  Send an email!  Ask a question!  Share a gripe or a solution!  Tell a friend and leave a review.   I’ll be posting a lot more on this site (guess who hasn’t figured out how to change domain names yet … stick around).  Plus – the back catalogue – things I’ve written about that were a bit too tender to post at the moment.

Seriously – let me know what you need to know, what you’d listen to, what would make me laugh about what we’re all going through.  And I’ll be posting more, right here.  Have a great weekend!

 

 

 

 

 

There also comes a point in the caregiving roller coaster where a trip to the emergency room becomes barely newsworthy.

A spike in fever, loss of bowel control, falls or dizziness that lands your patient and you in the ER for eight hours or so?

It’s all in a day’s caregiving work.

(From https://considerable.com/what-to-say-to-caregivers/)

 

Does this quote sound familiar?  It makes me cringe a little in recognition.

I am noticing my tendency to swoop in and try to Get The Elder All Fixed and then get mad when other people don’t volunteer to help.  Because – well, how could they? I’ve identified and solved a problem before they even knew it existed.

I’m Mary AND Martha — hanging’ with Jesus AND making sure he gets his pills on time and his bloodwork done and his dinner in safe little portions.   We’ve been to the ER already and we’re all checked out and heading home … yes, all in a day’s caregiving work. And this is pushing me dangerously close to Martyr Territory.

This is St. Lucy. She reportedly was stabbed in the neck, burned alive and had her eyes plucked out, rather than give up her faith-based good works and marry a pagan suitor.

 

She’s a character I hate.  No one likes Martyrs.  They’re so self-denying and righteous and smug.  “No, you don’t need to polish my halo; I’ll just wear it like this.”

I did a story on one once – a hunger-striker who bugged me enough that I wrote about him.  He was Starving For a Cause.  All out there on a public sidewalk, making himself both unavoidable and supremely annoying.  No matter that the cause was noble … he just got on everyone’s nerves.

Being a martyr is little like being that hunger-striker — like telling everyone you yourself are hurting on behalf of someone else who is hurting, and why haven’t they stepped up to help too?  It’s a pattern I’ve been around (in certain *cough* Big Religions) and I loathe it.

So I don’t like to find myself doing the same thing but here we are.

I’m using this blog to process Some Things about this Experience… and if it ever sounds like I’m trying to be thought of as saintly – well there’s a lot of pouting and simmering emotions and sometimes yelling in my car. A lot of teetering between being a Mary and a Martha – enjoying this time I have with the Elder but always with an eye on the next five things that have to happen to keep life steady.  When really I should just chill, and ask for some help before I need it.

(There is also the occasional late run to CVS so I can have a cigarette on the way.   It looks like the Blessed Virgin is having a smoke break, here, She definitely earned it.  I bet she had to sneak it, too.)

I’m realizing again, how mandatory the oxygen mask thing is – and how if I don’t get mine on first, get what I need, then some things won’t happen.  And if they don’t — well, fine.  Not fine-fine, but, we’ll just have to live with it fine.  And if folks around here pout, well, they can hire some more help.   Although, frankly, I’ll be the one who has to do the scheduling.  Ahem.

I haven’t read this book yet but it’s popped up under a couple of searches.   Here’s an article by the author. The quote at top of post – it’s from a good article about what to say to caregivers.  And if you like numbered lists of things you can fix about the situation, here’s one.

 

 

 

(Niagara Falls from the American Side, Frederic Edwin Church.  Courtesy of Albright-Knox Museum)

It’s not fun to talk about but it’s everywhere.   Waterfalls of it.  Oceans, really.

You know what we’re talking about.   It seems to get everywhere but you don’t realize that till later, when floors are sticky and something smells … off.

You reach for the stuff you use for pet stains but to little avail.  If you took one of those blue-light things you’d discover ancient stains you don’t want to know are there.  It’s Sisyphean, this task of keeping things clean and smelling good.  No one involved wants it otherwise; it just takes a lot of work.  And it feels cruel to disclose this.  But it would have been useful to know in advance that those ads with the little copper tube guys?  Like pipes? Are meant for your Elder.

One of our friends, in a bid to calm her mother, explained that the little absorbent garments she had to wear, with the bow in the front?

Were Travel Panties.

I think that’s brilliant.

 

 

A few months back Our Elder cracked five ribs after a fall in the yard.  That was drama.  So much pain and little could be done for it.  But he recovered.  We’d only had one return ER trip since then … until … searing pain over Thanksgiving meant something was wrong.  So naturally, they put us here.

(**?)

No, it wasn’t cancer.  I tried to tell them. It’s just – old bones.  But hospitals be hospitalin’.  That meant two solid days of tests of everything – in case.  Like, icky kinds of tests.    (why can’t I make that image smaller?  Why can’t I make that image go away?). Anyway … we are Down for this Drill.  We know from Hospital Trips.  Enough to pack some food because the cafeteria keeps weird hours. 

Goes without saying that the hospital Our Elder likes … is not in the same state as his doctors.  (DC/MD/VA, you might want to collaborate, just saying).  So his own physicians could only phone in, while a very, very, very lot of specialists got to try out all their toys.  I shouldn’t be so sarcastic; it just seemed overkill.

Between the ER and the two overnights … we must have entertained 20 doctors and/or techs, nurses, Patient Advocate Quality Assurance Specialists (they come in teams of 2), Interns, Residents, Dining Staff, Physical Therapy Evaluators, Discharge Team and Custodial.  We are beyond grateful Our Elder has supplemental insurance (actually, we sorted that one out when he forgot to put his fees on auto-pay …).  At some point during the ER part they took extra blood, in case they needed to test it more.  But they left it behind when he was switched to a room.  That’s how it ended up in my tote bag, discovered only when I emptied it in the kitchen two days later.

Yep.  Nothing like carrying around a vial or your dad’s blood that you forgot.  Fun on dates, I am, indeed.   To ice the cake, just hours before discharge, he complained of a cough.  And a whole new set of friendly specialists made me wear this:

At least he got a pretty view.

And it didn’t end like this.

For the time being, it’s back to 16 pills a day … plus a balanced diet of Percocet, Tramadol and Extra-Strength Tylenol … and oh, this.  Tho he won’t use it. 

And now we have a whole bunch of these:

Holler if you need any hospital mouthwash.  We’re swimming in it.

***  This hospital’s oncology wing is named for a different Robert E. Lee.   A much more recent one, noted for his work in media.   But given that it’s in Virginia … well, enough said.

 

These are the only working Christmas lights in the house.  Out of three boxes of them.   I am decorating the tool-shed, I guess. 

Elder-care seems to involve a lot of swearing, and trying to Make Things Seem Nice, when really, they kind of aren’t.  And trying to string up Christmas lights in your dad’s yard, as he always did, to cheer him up and make him (and you) feel like you are taking good care of his house, and by extension, of him.

This is what I accomplished.  After testing the lights, lassoing some azaleas on the patio, de-lassoing when the plug didn’t reach the extension cord, and finally giving up and driving off to buy a tree and some replacement lights.

WHO STORES THE COLORED LIGHTS ATTACHED TO THE WHITE LIGHTS?  NICELY COILED AROUND A STORE-IT-EASILY CABLE THING? WHO??

PEOPLE WHO HAVE DEMENTIA OR HAVE BEEN CARING TOO LONG FOR SPOUSES WITH DEMENTIA, THAT’S WHO.  

NOTHING in this house is ever what it seems. 

HALF the lights don’t even work.  These are ALL ONE STRING.  But in the middle they sort of cop out.  Kind of like me, after trying to string them one night, waiting till the next day so I could see better, and discovering, at dusk, that I am writing squiggles and probably foul words in the bushes with lights.

I drove off to the garden center for a real tree, and paid them extra to put on the tree stand and give me All New Lights.   I am dropping lots of money at the garden center.  They love middle-aged Ladies on the Verge.  We blow in and take all the things we could possibly need to Make Someone Happier and still, even with REPLACEMENT BULBS, the lights don’t work.  Garden-center teens explain lights never work the next year, it’s just a racket.  Works for me.  Take my money.

 

 

Do you ever wish you had someone plan your meals and activities?

My dad is doing his physical therapy at an assisted living place.   And to be honest, some days I wish I lived here.

They make amazing meals.  Happy hour every evening, with good hors d’oeuvres.  Two movies a day – documentary in the afternoon, fun feature at night.  Nicer furniture than at my house.  Fresh flowers all over, and good lighting.   They do your laundry and clean your room and pretty much take care of life’s chores.  The staff is stable, too — no turnover, and super-kind.   Their Thanksgiving banquet is even now being readied.

Who wouldn’t want this?  My dad, that’s who.  He stayed here for a few months last year and was miserable.  So now he just comes for physical therapy.  But then he stays to have a latte from the latte machine and hang out and see friends.   I think secretly he likes it but doesn’t want to say.  It’s sort of perfect at this rate – they like him here and welcome him for dinner or a meal about once week.

The thing about assisted living is?  It’s wildly expensive.  Like, breath-takingly so.  This is a new place in our town … and it’s for-profit.  I didn’t know there were for-profit places like this.  This company seems to have targeted suburbs with affluent elder populations.   People with good long-term care insurance or very comfortable retirement plans.

That’s probably why Dad decided not to stay on here.  We aren’t “affluent.”  My parents  saved constantly, and invested, thankfully, but the sticker-shock he had was severe and understandable.  Who has $8-10,000 a month, even for nice flowers, meals, nursing and laundry?  They did an amazing job caring for him after his hospitalization last year, and he recovered so much better than we ever could have hoped.  So I have nothing but gratitude for this place that welcomes him back … but I have to wonder … with a nose-pressed-to-glass feeling … if this kind of old age is only available to the wealthy.  As a country shouldn’t we make sure all our elders are comforted, safe, and have a movie or two to look forward to?

And their caregivers could use a few days of chillaxing, too.  

 

 

Have you heard about Sundowners Syndrome?  Elders sometimes change behavior late in the day.  Around here, we call it Suntory Syndrome.  That’s because one of our Elders seems to think a cocktail before dinner is a good idea.  Even though he isn’t eating much dinner.  And is on 16 pills a day already.  And then wants to take a sleeping pill before bed.

Elders and alcohol abuse could fill a book many times over.   It’s on the rise. And the effects on older women are twice as destructive to the heart as on men.  At this juncture, our Elder’s doctor has said he should enjoy himself.  But sometimes that gets scary.

Tonight, after returning from a short trip, one of us found an elder enjoying a cocktail at 3pm.  Later on, said elder decided to broil an entire pack of bacon for dinner.  Broiler + elder w/dementia + alcohol + bacon = one big scary mess in the kitchen.  And  he only ate one slice.

The Hazelden Foundation has some resources for identifying, and if you can, confronting the problem.  But at this very late date in our family, it doesn’t seem likely that there is much to be done, save confiscating the car keys.  Someone still manages to get it, when his helper takes him grocery shopping.

Have you noticed this – and had any luck putting the brakes on?  Let us know.

 

So it’s almost 1 a.m. and one of us has finally taken a sleeping pill to combat the over-thinking about All This Mess of aging brains.   That’s when there’s a knock at the bedroom door.

“Hey you have to get up and see this.  Come see the kitchen.”

An elder, who has awakened for his middle-of-the-night ice cream treat, insists there is something noteworthy at this hour to see in the kitchen.  Elder has also had his sleeping pill some hours ago, and is unsteady on his feet.

Thinking it might be a cat issue I wake and walk to the kitchen.  Where the entire floor is smothered in soap bubbles, up to the cat dish.

“I don’t know what happened,” Elder says, puzzled.

“What did you put in the dishwasher?” I ask, almost accusingly.

“I just used the blue stuff, Dawn, the stuff on the sink.”

“Dad.  That’s dish-washing liquid.  That’s not the stuff you put IN the dishwasher.  Remember?  The Cascade is under the sink.”  I don’t point out that’s where it’s been kept for, oh, these past 50 years.  And that he knows this.

“Well I couldn’t find it.”   This would be funny, except that he did this a month ago, before I moved in, using TIDE PODS, and was wondering why there were always bubbles leaking from the dishwasher.

Many bath-towels and soaked washcloths later, I drag the wet laundry down to the basement.  At this point I’m trying not to make him feel bad.  “Well at least we have a really clean floor!” I try to laugh.  “Yeah, I still don’t understand what happened.”  That makes two of us.

When I walk around the house I grew up in I alternate between annoyed and … embarrassed.

Annoyed because somanythings seem to not work – light sockets, oven broilers, the seal that keeps the fridge shut.  The patio seems to be growing green slime.  The laundry room is … well, the less said the better.  Even with dehumidifiers.

Every little thing seems to have gone to pot in the years my parents were getting older.

And – I’m embarrassed.  And embarrassed that I’m embarrassed.  In part because my sister insists this is a “tear-down” house.  At first my mind went to the imaginary people who might buy it one day.  And I realized no one weaned on HGTV would be ok with the tiny closets here.   Or the outdated bathroom fixtures.  Or the general lack of anything telegraphing “modern”  “hip” or “upper-middle-class.”   But it was good enough for us growing up – no one cared if you jerry-rigged a hole in the bathroom closet so you could toss your laundry directly into the basket downstairs.

But I can practically hear Chip and Joanna groaning.

I think my sister is right.  This house may have served its purpose and it may need to be entirely overhauled one day.   It just makes it hard to put up with all the little things that are wrong with it.

I think that’s one of the lessons of elder-ness and illness.  People haven’t noticed, or have simply chosen not to deal with, a lot of the crumbly stuff that isn’t visible.   So there are lots of little things that become Frustrating.  They don’t really matter that much but it would be nice if the handle stayed on the vegetable crisper.  At least the azaleas are gorgeous!

I’m headed to the Midwest to say goodbye to a beloved uncle.

And I’m flattered, but a little scared, that my cousins have asked me to do the eulogy for him.

They liked the one I gave for my mother a few years ago.  And understandably, everyone is pretty spent after a death in the family.  Sometimes someone a little more distant has the energy to do what the family most needs.

I’m about to “report it out” — interview friends and family about what should be said, remembered, their stories.

Having watched so many  services for political figures, and written so many remembrances for NPR, in my own voice and for so many hosts to read, this comes, strangely, as a very natural act.  My dad has written some political eulogies and a beautiful one for his own mom — and the lines he wrote still echo in my memory.

A good eulogy is a thing of beauty.  It should sketch a life, its meaning and impact, its arc, and hopefully comfort everyone hearing it — uplift, reflect our shared sense of loss and our love and appreciation.

But that’s a tall order.  Have you had any luck putting memories to words?  What works?

Signed,

The Family Eugooglizer