Asking Questions

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A long time ago (circa 2001), as I was finalizing paperwork at the nursing home where my aunt had lived out the last years of her life, the social worker looked at me and said something along the lines of “no matter what people say, you were always her advocate.”  I’ve always thought that was a polite translation of “you’ve been the bane of our existence for the past several years because you questioned just about everything we did and you often made decisions that we didn’t agree with because you thought it was what your aunt would want.”

This story is from before I knew much about caring for older adults.  It’s from when I was the relative living closest to my aunt and fell into caregiving like Alice tumbling down the rabbit hole.  It’s from a long time ago and the landscape is definitely changing as the idea of person-centered, person-directed care gains a toehold.  At that time in my life I worked at a major medical center.  I was armed with an army of doctors to advise me but at times was strangely alone.

I remember two family meetings from those long ago days as if they had happened yesterday – the first and the last.   This is the story of the first meeting.  The dialogue is not exact in terms of the verbiage but it is the essence of what was said.  It was one of those strangely alone times in an era before instant access through cell phones and texting.  No doctors to advise me on this one.  Just me and a crisis created by my aunt in her very first weeks as a nursing home resident.

My Own Private Gates

I had determined that I could no longer safely maintain my aunt at home.  In that era, it was hard to find a nursing home that would accept a patient directly from the community.   I finally found two with openings and selected the one that was the best fit for our needs.  It was clean, close to where I worked, and recommended by the doctors that I worked with.  Sheila was placed, we cleaned her apartment, and the next chapter of caregiving began.  There was a sense of relief that I was no longer juggling 24-hour care and doctor’s appointments.  That was short-lived.

I remember arriving for that first family meeting and the administrator running out to greet me and tell me that it was going to be bigger than a normal meeting.  “Your aunt kicked an aide across the shower room this morning.   Our best aide,” he said.  In addition to her core care team, the director of nursing will be there, the director of social work will be there, the medical director will be there, the admissions director will be there.”  I remember the list seemed endless.  I asked if I had time to go up and see my aunt and he said “yes.”  And, so I did.

Although she had dementia, you could still ask my aunt direct questions at that point and get coherent responses. 

So I asked her, “How are you.”

 “Terrible.” 

“Why? “

 “This woman was bothering me this morning.”

“What was she doing? “

 “I was closing a deal for real estate in the Hamptons and she kept tugging on my arm and wouldn’t go away when I asked her to.  I was going to get a big commission”

“What did you do?”

 “I kicked her.” 

“That probably wasn’t the best solution.” 

“Well she stopped bothering me.” 

Trap

“OK, try and feel better and I hope you can close that deal.” 

Walking into that family meeting was tough – it was indeed big and there was just one place at the table left, for me.  My mom (my aunt’s sister) and dad were relegated to chairs behind me.  (As an aside, my Mom hated my nursing home choice but that is a story for another day).   I sat and folks introduced themselves – name rank, serial number.  Nancy, niece, legal guardian was mine.

Then they were off to the races.  A veritable Greek chorus of voices, a cacophony as it were.  The two statements I remember were:

“You didn’t tell us she was violent. You lied” (admissions director); and

“That is our best aide.” (Nursing director). 

I remember they said they had to send the aide home.  And then they all looked at me, expectantly.  I think they were waiting for my apology, my confession, maybe my tears.

Instead I asked, “Did anyone talk to my aunt after this happened?” 

Silence.  

Finally someone said, “Well no, we talked to the aide and we know what happened.  She’s our best aide.”

“I did.  Talk to my aunt that is.   Let me tell you what happened from my aunt’s perspective.”   And I told them about the deal, the commission, the not wanting to be bothered, and the woman who was not paying attention to what my aunt was saying.

Last Wall

More silence and then a voice, I don’t remember whose.

“That doesn’t negate the fact that she was violent and that she kicked an aide, our best aide, across the shower room.”

“She’s not violent.  Can I ask what time of day this was?”

“7:00 am, we are on a schedule, it was her turn for a shower and we do those before we take residents down to breakfast in the dining room.”

“So every resident has to be up, showered and at breakfast?”

“Yes, they all have to be up, showered and in the dining room for breakfast unless they are bedridden.”

“By when?”

“8:00 am.”

“Oh.  Maybe you need to know a bit more about my aunt.” And I told them the story of my aunt.

She was the first female executive at her company and she’s always done things her way.  I’ve accommodated that.  If she wanted cool whip in the middle of the night, she got cool whip.  If she didn’t want to take a shower one day, that was ok.  Not ready to get up?  That’s ok to.  So, no, she wasn’t violent when I brought her here.  She had no need to be – she was accommodated in every possible way in her home by the people who took care of her and by me.   Cognitively impaired?  Yes.  Hallucinating?  Yes.  Incontinent?  Yes.  Unsteady on her feet?  Yes.  Needing 24-hour care?  Yes.   All information provided to you on admission and verified by her physician.

Violent.  No.  Not in the last several years.  Not ever.  She was the jolly funny aunt with the house on Fire Island that she built herself.  She was the aunt who always got her own way.  She was a top-level executive who smoked like a chimney and could drink with the boys.  That is until she got lung cancer and the world, as she knew it, stopped and a new reality set in.

Water Lily

I have no doubt that your aide was doing her job, doing it well, and that she is your best aide.  My aunt is a big woman, she is younger than your average resident, and she is stronger.  I’m sorry she kicked the aide and I hope she wasn’t hurt.  But I’m also wondering why she was dragged out of bed for a shower when she didn’t want to go?  I’m wondering about other residents who may be older and weaker and are similarly forced to live by your schedule.  I am wondering why on earth everyone has to take a shower before 8:00 am. 

More silence.

And then a voice, “We could maybe do things a bit differently.  Have the staff check on her and if she is not ready to get up, move on to the next patient and check back in to see if she is ready.”

Another voice, “maybe she could have breakfast in her room if she’s not ready to get up.”

And a third, “and maybe we could give her a shower in the afternoon.”

“That would be great,” I said.  “I think that approach would be better for her.  She really has never been a morning person.”

There was some more mumbo jumbo about what type of occupational and recreational therapy she would get, what medicines they had her on (NOT good ones as I recall), and a few other things they thought I should know.  And then the meeting was over.  Just like that.

Oh, don’t get me wrong, I still had my Mom to deal with and she was not a happy camper.  But the hard part was done.  The part that made my hands and my voice shake as I stared into the abyss of a highly regulated industry and got the team to bend their rules to meet my aunt’s needs.   I’ve always hoped they did a post-mortem on that meeting and made accommodations for other residents.  Hoped but never knew.

White Shadows

This post is titled “Asking Questions” and there are questions threaded throughout.  What was the most important question I asked that day?  “Do I have time to see my aunt? “  If I hadn’t done that, the cacophony of the Greek chorus would have rained down upon me and I would not have been able to counter with her side of the story.  I suspect I would have gotten to the same place but it would have taken a bit longer to get there.  I sometimes envision the whole troop of us having to go up and visit my aunt to get her side of the story.  Now that would have been a story to tell!

I’m not sure where I got the courage to sit down at that table and do what I did.  I know I wasn’t as polished as this story I’ve just told.  I know that my voice shook and that my hands did as well.  For sure I rambled a bit more when making my points and I think I was a bit melodramatic about the other residents not having their wishes respected.   Physically, I remember feeling faint and as if the blood were coursing through my arteries and veins at 90 mph.   That’s how I always feel when I’m nervous.  I am sure that was the day the nursing home administrators stopped worrying about my aunt and noted they needed to proceed with caution when it came to her care else they would have to contend with “the niece.” 

That was the day I learned that as a caregiver, one of the most important things I can do is to ask a question.  And to keep asking questions until I’m satisfied that I know what I need to know to help make a decision or to make a decision on behalf of someone else.

That was the day I became an eldercare advocate.   

It's a Long Road