Eeyore, chapter two

Mom's cough has gotten worse.  This is a big deal, since a cough can turn into a fatal pneumonia.

The hospice doctor came yesterday, Saturday, to see her.  Prescribed another antibiotic and some breathing treatments on a nebulizer, 4 times a day.

I came to see her late yesterday, about 8PM, and the nebulizer machine was sitting there (delivered by rental agency contracted for by hospice), but not used.  The aides at the home didn't seem to know anything about it.  I called hospice to ask, and they said, yes, they should have the orders and then ... 'let me call you back'.  After a few calls, and a late-night visit by the director of the hospice agency...  here is what happened (I think):

It seems that the the hospice doctor assumed his hospice nurse would fax the orders.  The hospice nurse assumed the facility would see the orders and make it so.  The facility aides somehow missed the orders altogether.  And, mom lost a full day in improving her lung function.

Mom didn't get her breathing treatment via nebulizer until 2:30 PM today. Then they were late with the next treatment, so that they could only get two treatments in today, rather than the three we wanted to squeeze in.

What is going on?  I just don't get it.  The proverbial rain cloud over Eeyore (mom) continues to rain.

So, let me breathe deeply as I conclude this blog post.  Maybe I'm getting too much into boring weeds of mom's daily treatment, in my frustration with their errors.

So let me step back and just say...  I think it has been essential to take a very proactive role in mom's care at her homes.  I'm not saying that family members should be a royal pain to care facilities - but to be a very VERY active and engaged partner with them in her care.  I want them to understand that we are working together - and that I am their best friend, or else I'll ask them directly and specifically about matters until I understand that they are handling her care appropriately.

I'm there almost every day.  I make an effort to learn the aides' names - Heather, Cindy, Petti, Holly, etc - and to greet them and to thank them just about every time I see them.  I smile, show genuine interest, and joke with them.  But - BUT - I also insist that Mom gets the care she needs.

Honestly, I'm exhausted right now.  Weary of fighting this battle again. Will Mom survive her 'care'?

Eeyore in the 'home'

Maybe it's a curse.  Maybe mom is just our own Kansas version of Eeyore.  While my mom has had her moments of being difficult, I don't see that as her pattern right now.  Yet, things keep happening.

Last night's aide refused to help mom change her brief at bedtime.  When mom asked for help, the aide pointed at the wet brief and said, "Take that off.  Then put this on."  And walked out.  This is an aide that has a good reputation.  (The aide will be assisted to understand what should have happened.)

The night before, the aides couldn't find mom's medicines in the cart.  Inexplicable, since the day aides could find them.  The night aides couldn't. (She eventually fell asleep without the sleeping pill.)

Her sheets haven't been changed for over two and a half weeks because they do that on Shower Day, but she wasn't scheduled for a shower there since hospice comes in twice weekly. (She has now been scheduled for both a shower and sheets.) 

Mom was worried that she had offended someone (which is not completely out of the question, given her history, but is not the issue here).  And even if she had been crochety, she deserves good care.

And of course, this follows a nightmarish 5 weeks of dealing with issues at the nursing home where we had just moved her.  I kept complaining, daily, constantly, over real issues. I felt like a real kvetch.... because I was one, though fully merited.

Problems here are nowhere near as consistent nor as major nor as frustrating as in the nursing home, but things do keep happening to her! We are handling them with the facility without the least bit of rancor on either side ... and our few concerns are being well-received and handled correctly.

We had a nice, truly friendly chat with the director today.  She just shook her head, apologized, said the aide absolutely should have helped, that Mom didn't do anything wrong ... and remarked with surprise that it just seems that it keeps happening just to Mom.  A mystery.

Eeyore Roberta, with her personal rain cloud that follows her.  I'll bring an umbrella.

Dementia and Alzheimer's

The last time my mother went to her regular physician was just before the move around February 1.  She needed a checkup in order to be admitted to the nursing home. The visit was routine - heart, lungs, eye, complaints.  I've been increasingly lacking confidence in this doctor, but have kept seeing him, for now, since my mother loves him.

As we walked out toward the check-out desk, I saw the doctor had written, "Alzheimer's Dementia" as a diagnosis.  I didn't turn around to question him or argue, as I was eager to leave. But, I just don't agree.

I do accept that my mother has a measure of dementia.  She forgets words, or what she had for lunch. She occasionally forgets names - but she does not get confused about who someone is, and, honestly, she usually remembers more names than I do.  She is sharp and discerning about when someone is treating her well, or badly.  She can describe incidents or issues. She does crossword puzzles when she wants to.

Is she occasionally fuzzy?  Sure.  But more often, she is acutely aware and oriented.  She can be rude but also funny and wry. She is both sarcastic and engaged. She has curiosity and is interested in her surroundings - "What are those people doing over there" (going onto a walking path).  "When is the first day of spring this year?"  (today).  I took her along with a group of mixed-aged friends going to the wonderful Toy and Miniature Museum in Kansas City yesterday, and she loved the outing.

Does it matter whether her records read "Alzheimer's dementia" versus "Dementia".  I've honestly wondered.  Am I wrong to try to get her new doctor at her new assisted living facility to adjust the diagnosis?  Does it matter? 

I really want to say YES!  Of course it does!  Not entirely because I feel protective of her, nor to imply any lessened risk to her future - or of any potential risk of my own possible Alzheimer's. And not entirely because "Alzheimer's Dementia" implies a diagnostic precision in the cause of and type of cognitive loss, one that I don't think she carries.

But I think a diagnosis of Alzheimer's carries an assumed way that a resident in assisted living will need to be treated - a way that is not matching what my mother's needs are.  And it implies an impending inability to sustain residency in an assisted living facility.

At least, that's my excuse for wanting to clarify the diagnosis.  And, I'm sticking to it.

My brother is irritated with me - but let's not talk about it!

When we were moving Mom a couple moves ago, I had prepared a lot of her apartment for the move to the nursing home.  I had spent many hours sorting through her things, planning and anticipating the move.  My brother happened to have a business trip here, so happily for all of us, he could help; my sister and her husband were coming down from Iowa. So, we were all there to do the sorting and cleaning out and clearing out. Great. It was a LOT of work - furniture and mementos and clothing and hospice supplies, photos and things both precious and trash-able. A lot of work for a short weekend, and three older adults plus two spouses.

And just to give context, I'll remind you I'm a daughter.  Not the golden son, oh no, I am the daughter.  And I'm the middle child.

In the course of the move, my sister and I noticed that my brother was irritated.

Let's just say that he is used to being Mr Male, Mr In-Charge.

Ummmm..... so am I, except substitute "Ms".  I've managed large and complex projects and high-level work teams in my corporate life, all before I retired.  So, I'm really OK with managing things - I was not fluttering around, all confused and silly, "Oh my I wish there were a MAN here to guide me!"  I am not an insane control freak, but I knew what had to be done, and I knew our resources and time, and I was somewhat directive.

Anyway...  at some point, I'd asked the guys to do something, and my brother just got really tense.

My husband said that my brother made some comment about trying to be accepting.  And my brother has been tense ever since. Somewhat.  Except of course he doesn't really say anything directly.  Just curt, just tiny rudeness. Wisps of smoke, not full flames. I won't bother relating the curt email he sent after ignoring my three weeks' worth of emails.

Oh well.  I'm here, doing my thing.  It's easy for him to want to waltz in every 2-3 months and be Mr In-Charge, but here, life is going on without him.  And we're really very OK.  But it puts a distance between him and me.  And I'm tired of being the one to make peace since I actually feel like putting a bit of fuel on that fire.  So, I'll just let him be the way he is.  And it will go away eventually, yet another wound that only partially heals, waiting for the next cut. Just like my entire history of my life growing up in this family.

My father and my sister had a conversation about me, many years ago.  He literally said, "Nancy and I have a great relationship - we don't talk".  My sister was flabbergasted that he so clearly articulated the matter.  That he was, apparently, so very aware.  And - my brother believes we had a perfect childhood, and aspires to be my father.  I believe he has, for the most part, achieved his goal.

Settling in, both of us

Mom is settled in, and truly content.  She is being taken care of, the aides are helpful and positive, and the residents are friendly.  Mom actually has actually engaged in some activities, and enjoyed them!  The food is good, life is peaceful. 

During this past week, each day I've brought more things - purchases, or, from my garage, things that I'd earlier removed when she moved to the smaller space in the nursing home.  I've been putting up pictures, arranging clothes.  My sister came to visit, and we found a used dresser for her clothes.  I really think she's 90%  'done'.  

Of course, she constantly says she's about to die, as she's said for three years.  "Don't buy that large package of batteries - just the four-pack - since I won't be around long enough."  She resisted buying a dresser.  

But overall, she is content with her home.  

And I'm going to start taking a couple days off each week from visiting her.  Today I have all day at home for my own needs (prepping my house to sell it as soon as we can get it ready).  And I know she'll be OK.  That feels stupendous.  A day without a "Mom Run".  Taking care of myself.  Cool. 

A Disney day

Today feels like a true Disney day.  The sun is shining, the birds are singing, all's right with the world - with a nod to Robert Browning as well.

Yesterday, the day was dismal - rainy, cold, lightning and thunder.  I had acute bronchitis, with a spot on my lung that looked like possible pneumonia.  I had chills, fever.  My doctor warned me to stay away from my mother and go home to bed. 

But it was move day.  Nuh uh, doc.  Gotta go.  

Equipped with hand sanitizer and, yes, a mask, I went to work.  Got her physically moved with a few essentials (sheets, blanket, her nightgown, cookies, walker and wheelchair), before lunch.  Hospice moved in the hospice bed and her oxygen. 

Then went home to wait for the second shift.  

My son Kelly and his brother-in-law Chad came at 6:15 that evening.  Put a few things in the truck from my home (bouncing some things back to her that she'd already passed to me).  Then, off to the old place to pack up and move her things.  We got to the new place about 8:45 to find her in bed.  After we unloaded, I whirled around, got things out of boxes and set them out - just out, anywhere.  

She looked so peaceful and content, happy to have a safe space. A home.  And now, her move complete, I can stay home until I'm better and not contagious. 

Today, the sun is shining, the birds are singing, all's right with the world.