Dementia, Decisions, And Developing a Different Love 

Decisions 

She held his hand as though  

He would give her strength 

Although he was  

Demented 

And fussed with his 

Clothes a little like a  

Child 

We can treat him my  

Radiologist mentor said 

Or we could not 

And she looked up with round eyes 

Caregiving is hard 

I have  

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 

Strangest 

Heart. 

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.