How vulnerability might work in surviving a nursing home

When my mother was in the nursing home, she hated it.   She was not alone.  Many others did as well, and it is even possible most did.  Her stay did not last long.  She entered for rehabilitation following a broken bone from a fall in her apartment.  That did not go well. She scrapped with the physical therapists, all seemingly very young women who kept wanting to call her ‘Margaret’.  That was her given name, but throughout her entire life she was…. Peggy. I told the young therapist, however, that given the age difference, she might fare better with my mother if she called her, Mrs. Tonsing.  I was frankly surprised she did not sock the aid who came to change her diaper.  Mom never wore these things at home, and I would later learn that it was just easier to plop people into wheelchairs and into diapers. 

Mom wanted to go home; just how long was she going to be in this god forsaken place? Regrettably, the home’s social worker convinced my brothers and I that staying there was ‘best for Mom’.  She was growing a bit feeble, her fall an indication of that.  The social worker claimed that my mom talked about still living in the house we all grew up in; I never once heard mom talk like that.  This was a very new experience for us and we convinced ourselves that the social worker was probably right.   I had the painful task of telling mom when she next asked – ‘when am I going home’ – that was not going to happen.  She looked away, around the room, up at the ceiling, at the bureau at the end of her bed where Dad’s picture was prominently displayed.  And I think that was the moment she threw in the towel.  From that day on, she began to distance herself from everything around her, including us.

To be fair, this was actually a very nice place!  One of the better ones in town, associated with the Catholic Church.  Many years earlier, when Dad was still alive, they had made plans that this would be the place they would go, ‘when the time came’.  But people are rarely ready for ‘that’ time.  Mom was there three months almost to the day when she died.  And to this day, I wish we had ignored the social worker and brought her home.

Brene Brown’s wildly popular Ted Talk on vulnerability struck me today.  I listened to it again while walking on what is possibly the last gorgeous autumn day of the year.  Artic weather is storming in from the west.  Each time I listen, I always hear sometehing new.  Brown says that people who are authentically vulnerable – those who give up being perfect and making things and people around them perfect – have the best chance of finding joy.   What does that have to do with being in a nursing home?  Mom was not the only one sinking into despair.  Sad faces with empty looks were everywhere.  When my husband was facing his own crisis that ended up with his also being in a skilled nursing facility one of the nurses told me that the only people in the facility not experiencing depression were those who had been homeless.  Now they had a clean, warm bed and three meals a day.  Plus, lots of entertainment! 

There was one woman in mom’s facility that stood out.  She was older than mom.  Every day, she emerged from her room wearing the smartest outfit she could piece together.  Her hair was well coifed, she wore makeup, and her nails were polished.  And she smiled constantly, acknowledging everyone.   On Valentines Day, she let someone put heart stickers on her blushed rose cheeks.  And on Saint Patrick’s Day, she wore shamrock stickers.  She, too, had a past.  Perhaps it included a husband, some children, maybe grandchildren.  She was no doubt in diapers, and needed help bathing.  But what struck me as much as her sweet almost beaming smile were the stickers.  The others did not strike me that they would allow such things to be plasted on their faces, and she delighted in them!  Her vulnerability brought her joy.

I do NOT want to land in a nursing home.  I cannot think of a person for whom this is a wish.  And if it happens, let me be that sweet and silly lady with the beaming smile and stickers on her face. 

Betty Tonsing Ph.D, CLSS

Patient Advocate Consumer

picture of window shamrock decal belonged to author’s mother, and hung in their home window for decades

2 thoughts on “How vulnerability might work in surviving a nursing home”

  1. This spring I drove from my home in Fort Wayne to Florida for a planned 2 week vacation, but ended up breaking my ankle severely on day 3. I ended up having trauma surgery in Ocala, then a 12 day stay in a nursing home, abandoned by the “friend” I went to see and family more than 8 hours away. Though I’d been hospitalized multiple times in my 66 years, this was my first stay in a nursing home. I had no “people” to help me navigate in this foreign land and soon figured out there where 2 types of employees there-those that cared and those that didn’t.

    As a patient, I was assigned 3 shower days per week, but nurses & CNAs would do their best to avoid providing that service if they could saying that the next shift would do it. My ankle incision and skin around it became worse but no one seemed too concerned and seeing a doctor was rare. I got the hell out of there as quick as I could and flew home.

    But the fun wasn’t over, as the new orthopedic surgeon I found at home took one look at my initial X-ray and said one word-wow! Not something you want to hear, really. 3 months later I had a second surgery to correct the first and ended up in another nursing home. I chose this one myself due to a recommendation from my then physical therapist and the fact they were the only facility that had in house aquatic therapy. Unfortunately, the administration and the PT department were in complete disagreement about letting me use the pool with an open wound, the they had the means to cover it, so I never got to use that amenity during my stay at all as I had no advocate to push for me.

    While in this facility, I met a wonderful 89 year young woman one day while joining a euchre game. Later we ate meals together a few times and I learned she was in a horrible accident a few years back which killed her husband and injured her lower spine. After her initial surgery then placement in this nursing home, they really only worked with her for a few months she said then gave up on PT after the doctor declared she would probably never walk again. It made me furious to hear such a thing, as aquatic therapy was my miracle many times in the past after having 4 different back surgeries.

    My point and question is this: from a consumer standpoint, how does a person who lives alone actually FIND an independent advocate? IE, where can I find someone who is not on someone else’s payroll that I can trust NOT to push a corporate agenda? The issue becomes even more urgent when gender/sexuality ID issues enter the picture.

    Nyla Nyffeler

    1. Hello Nyla, and thanks so much for sharing this story! Several years ago, when my book was first published (Stand in the Way! Patient Advocates Speak Out), people approached me in that they wanted to be ‘patient advocates’, and how could they get certified. They were primarily more interested in helping others as an independent than working for a health system for the reason you cited: to authentically advocate on behalf of a patient rather THAN the system. And I understand that! When we are most vulnerable and feel we are subject to disconnection while in a health crisis, it is difficult to also trust the system claiming to help. To my knowledge, there are no groups yet offering this type of certification although UCLA online adult learning community was offering a ‘certificate’. This worried me. UCLA is clearly a known institution but to date, there is still no national body that is offering national standards for certifications and such certificates could be meaningless to the consumer who paid for a course. All this is to say…….there is no current independent body where one can find a patient advocate. The other reality is that each of us needs to find our own patient advocate; someone we know and trust. And this person, to be truly effective in a health crisis, needs to have both power of attorney AND a medical power of attorney. Without the medical POA, the person you want for your advocate has no power. No power to ask for your medical chart; no power to stand up to doctors; no power to make decisions when you are unable to do such. Just no power. The regular POA can pay your bills, and that is it. I know that is not the answer you were hoping to receive. And the other reality is that while you might secure a medical POA for when you are home in this case, you were traveling! What I want to do is to research this for you, and get back to you as soon as I can. What does come to immediate mind is to call your local Council on Aging. This is not to say you are old! Certainly not But if over 50 or 55, most such councils can help immediately because they have resources! Betty

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