While I was first visiting Maddie 2 weeks ago, I learned she hasn’t walked any significant distance in her home in the previous 3-4 weeks. She eats, sleeps and socializes with family in her recliner. She is 83-years-old and obese. She has a pressure ulcer on her sacrum, for which she is receiving nursing care in the home. She is receiving antibiotics for a newly diagnosed urinary tract infection, which has been forcing her to urinate once every hour. She has a history of depression and anxiety, each of which has been controlled (historically) by her current medication regime (I am not convinced that these are any longer effective and have requested a psychiatric evaluation).
A once proud and socially active pillar of the community, Maddie doesn’t leave the home any longer, but she welcomes friends for a weekly game of pitch at her dining room table. To move to the table, she has (with significant physical assistance from her son) stood and turned to sit on her rollator, which he then pushes to the table. She has been moving the same way to the bathroom to void her bladder – more than 20 times daily.
Today, after 6 home care physical therapy visits, her son greeted me at the front door smiling:
“Mom is doing much better – thank you. She is getting up to go to the bathroom on her own – she didn’t even call me in the middle of the night last night.”
Considering her history, I might have considered her increased mobility a triumph. Instead, I still felt guilty.
. . . .
Two days ago, on Wednesday, she was crying. I held her hand while she told me she was okay, but I fear that she was saying what she felt was required of her under the circumstances. She had lost control – I had taken it from her.
Earlier on Wednesday, she had walked to the bathroom. It took some encouragement, but after walking only 12-feet on Monday, she walked nearly 30-feet to the commode with her rollator. She was a bit tired and anxious as she tried to maneuver herself directly in front of the commode, but she had good control throughout. I praised and congratulated her for the achievement; her son did the same. She seemed not to care – I imagine that, in her mind, she was just happy to have stopped the task without appreciating what she had accomplished. “Thank God, it is over,” she must have thought.
She told us she was too tired to walk back to her recliner, so she was transferred back to her rollator and wheeled back to the living room, where she again transferred to the recliner. She politely agreed to participate in a few seated exercises to improve sitting balance, before trying to transfer to standing a few more times before the conclusion of my visit.
Maddie and I adjusted her recliner (actually, it is a powered lift chair) so the seat was positioned an advantageous 15 degrees from horizontal and, with contact guard, Maddie pushed off of her chair with her hands and raised herself – with her creaky knees – to a standing position. She stood at her rollator for 10 seconds before returning to the chair with good control. “I’m tired,” she said. “I can’t do anymore.”
“That’s not true,” I told her. “You are far stronger than you give yourself credit for. You didn’t think you would be able to walk to the bathroom either, but you proved to yourself that you could. You are so strong – you just don’t recognize it. Come on – one more – then I will get out of your hair for the day.”
She patted my hand that was resting on the arm of the chair as I squatted alongside her, “Oh, you aren’t getting in my hair, dear.”
“That is kind of you to say, but I suspect you may be playing coy. Come on, what do you say? One more, okay? I’ll even give you a bit of a boost if you need a little extra umph.”
She yielded, nodded her head, closed her eyes, and slowly sighed. She placed her hands on the arms of the chair (I placed my arm under hers), leaned forward and began to push herself to stand until, half-way up, she paused. “No, I can’t,” she said.
“Yes – Yes you can,” I said, resisting her descent back into her chair with my own arm. “Don’t you dare give up on yourself, you deserve better. Come on. Keep pushing.”
She began crying, but she was almost there – “Keep going, Maddie. You can do this!”
And she did it. I only asked her to stand for 3 seconds before sitting back in her chair, where she began sobbing in earnest. I knelt beside her chair and handed her a tissue. After she wiped her tears, she placed her hand on her lap, I placed mine gently upon hers. “I’m sorry,” I said, “In the moment, I couldn’t let you give up on yourself like that. I know what you are capable of and you need to see and appreciate it. You can do so much more than you give yourself credit for.”
“I suppose you’re right,” she said, as she took a deep breath and exhaled, allowing her shoulders to ease to a more relaxed state.
. . . .
She says she wants to walk to the table and sit in a chair to play cards with her friends. She says she wants to compose music at her piano again. She says she doesn’t want to rely on her son to help her pull her pants on and off. She says she wants to have some of her dignity back, but when she is faced with the challenge of achieving those goals, something gets in the way.
Perhaps she has never felt fatigue at this level before and it is overwhelming. Perhaps she is experiencing an acute exacerbation of her anxiety or depression. Perhaps her son is right: maybe she is just lazy.
All I know is that for one small moment of time, her goal was to sit down and I forced her to stand. I know that I (in part) made her feel something that brought her to tears. I know that life – with its obesity, social separation and isolation, psychological challenges, and physical deconditioning – has stripped so much from her over the last year, and that I (if even for a brief moment) stole something else from her as well. You see, up until that moment, for better or worse, she has been allowed to make her own choices. I stole from her one of the last few things that she could call her own – her autonomy.
Today she is moving much better than she was a week ago and I am able to document significant positive changes in her presentation. The patient’s family is thrilled with her progress; they will likely complete my discharge evaluation with a high patient satisfaction score, my boss will praise me again at my next annual review, and my director will continue to think that I provide some the highest quality care that the agency has to offer.
On Monday, I would have told you that I practice patient-centered care*. I am not sure how I would categorize my care if you asked me today, but I certainly wouldn’t call it ‘patient-centered’.