Finding my way back

After mom’s hip fracture in March of 2011 and move to the Skilled Facility, I wandered for some time, losing words, misplacing hopes, overestimating prognoses, and railing at for profit long term care organizations whose mission it is to imbue their aging residents with dignity and personalized care–and life. I avoided my sharing, here,  of grievances, disappointment, and hope, believing that the neglects and oversights would right themselves–that staff would start a new day with–All right, folks, let’s be sure that today–and everyday– we provide the best care and attention to every resident. No, the blank pages stared at me, reverberating in the frustrating environment of long term care. I found myself overcome in the wake of plummeting with mom into new stage of aging. My mouth agape in disbelief.

At the same time, I felt purposeful for a time, as my husband and I moved mom’s things out of her 500 sq ft assisted living apartment to storage. Her new digs, maybe 200 sq ft, allowed room for a petite desk and recliner. Gone is her maple high boy dresser, matching queen bed and night stand, captain’s chairs for visitors, antique entry table. The bed replaced by a hospital bed disguised in a generic beige geometric print bedspread–everybody has one just like it–sort of like school colors for old people.

I imagined that in a skilled facility, the presence of an RN 24 hrs a day meant that all of mom’s needs would be attended to–with accuracy and promptness. I imagined that after I mentioned that her fingernails were always dirty that staff would be sure to use the fingernail brush I provided when they bathed mom. I imagined that staff would ensure mom’s hearing aids were put in every morning when she was dressed. I imagined that when mom pulled the call light in the bathroom, staff would respond soon to help her.I also imagined that when I asked and provided a written request to check mom’s rattling and wheezing chest that the RN would, in fact, follow up.

What I know today is none of what I imagined.

My counselor reminds me of the AA prayer, a prayer I detest because it did not remedy the alcoholic family I grew up in, nor did the prayer of “wisdom” reside with us. Still, it is true that some things cannot be changed. Chronic neglect characterizes long term care facilities–not just this one where mom lives. Yet she lives, she is not waiting to die, but the care she receives often feels and looks that way.

Sunday when my husband and I arrived for a visit, mom was asleep on the toilet–obviously with no way to pull the call light, so after finding only two staff on the floor, five minutes later, one came to help. We greeted mom–no hearing aids. Staff did not know where the $6000.00 pair were. Eventually we located them–but the event violated daily care protocol–personal daily care–for this family member. This happens often.

Yesterday when I visited with her, staff changed her hearing aid batteries, or battery. One hearing aid had been without a battery for who knows how long. This occurs frequently. (Later, I will share the research about hearing and cognition.)

This is not to say that caring staff do not work on mom’s floor. Rather, staffing is woefully, criminally lacking. The fact that each resident–20 or so–pays $7000-$8000 per month brutally compounds the moral and ethical betrayal of nursing home residents and their families, along with the medical community who seek to do no harm.

We are fortunate, however, that mom is an optimist. Despite her severe dementia, she reminds us that she feels safe, still enjoys her meals, and looks forward to reading and solving crossword puzzles everyday. Gratefully, she does not see what I see. In fact, she wonders sometimes at our concern, “Why is everyone asking me if I’m OK? What is there to worry about?”

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One Response to Finding my way back

  1. Kathy says:

    Oh, Meg. I do know what you mean. I couldn’t believe that our facility could not keep my mother in dry “briefs,” and keep her and her room from smelling like a latrine. We finally solved it by hiring aides to be with her–I know: it seems so wrong to have to!–and the first two we had to fire. But then Mom’s long-time twice a week companion agreed to spend longer and longer days and amount of time, and Mom was dry and clean smelling from then on. Laundry: done every day (4) that the aide was there. Mom didn’t fall down as much. She was happier, and had a coffee and cookies every afternoon. The aide made the final decline and end of Mom’s life so much happier for Mom, my sister and me. Does it appear I am recommending this? How can I, when your mother is paying far more than my parents, and also, money was not an issue. I am holding you in my heart today. I haven’t been able to write for a year–I went mute in Mom’s final declining months.

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