We must be respectful and balanced when presenting medical options to a patient’s caregivers.
She held his hand as though
He would give her strength
Although he was
And fussed with his
Clothes a little like a
We can treat him my
Radiologist mentor said
Or we could not
And she looked up with round eyes
Caregiving is hard
Done it, it is overwhelming a massive weight
But she didn’t seem to notice
Because her head
Shone when she looked at him
Please treat him, she said
I have so little time with him
I will take whatever
I can get
And I saw love
And I was humbled by it
It is always beautiful when you
Find it growing
In a strangers
I confess, I had a bias. I used to believe that long-term caregivers of people with dementia would opt for low-intervention care at the end of life.
At age 16, I spent 18 months as a caregiver for my grandmother at the end of her life. It was one of the most difficult things I’ve ever done. She had multiple comorbid conditions, required complex medication dosing and bandaging for bedsores, and her dementia frequently manifested in socially troublesome behaviors. I felt overwhelmed and trapped by her needs and had constant feelings of failure because she never got better.
I also learned to love her deeply. I loved her because she was my grandmother and she needed me. Nothing more, but with time, nothing less. A different kind of love that I’m extremely grateful I got to experience at such a young age.
Later, in training and in my medical practice, I realized how well my grandmother had fared at home with me, much better than she would have at a hospital or institution. But I also found myself resonating more with caregivers who were burned out, stressed, and feeling guilty.
The encounter I described in poetry occurred on a radiation oncology rotation. It was only one person but it changed my practice permanently. I learned that we can’t really know how a caregiver will respond to dementia in a loved one. For the first time I saw the love I’d developed for my grandmother reflected in someone else. This woman had been giving full support for many years to someone with Alzheimer’s, and while normally someone in her position would be burned out and frustrated, she literally shone with affection and love for her partner.
While we opted for palliative care for my grandmother because her quality of life was very low, I’ve learned we can’t really know what a valuable life looks like to someone else.
We must be respectful and balanced when presenting medical decisions to caregivers of people with dementia. They are best positioned to assess the quality of life of their loved one when it comes to choosing between full-intervention or palliative care.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.