Monday 15 February 2021

Illness Experiences + Emotions = Treatment Choices

Me with my Dad

One day when I was 17, I was home alone with my Dad. I was lying on my bed reading and Dad was in his living room arm chair. At that time, my father was paralyzed on his right side from a series a strokes and his speech was reduced to sounds like "Ah ahhh" which he used creatively to communicate nuanced agreement or dissatisfaction. That afternoon, I remember hearing an unfamiliar noise - an unnatural guttural sound that startled me into running down the hall. I stood at the entrance to the living room, breathing hard, rooted to the floor. My father's head was arched back and his legs were splayed, jerking rhythmically. I don't know how long I stood watching. I thought my father was having another stroke. But it wasn't a stroke - it was a seizure. 

Years later, I was sitting at my kitchen table sipping a cup of steaming coffee. I remember the delicious feeling of freedom, of relaxation, of gratitude. Nicholas was only two years old but it was his first-ever day of school. His severe disability provided an entry ticket to a small and specialized pre-school for children who would benefit from therapy and whose parents needed a break. Nick never slept and so we ticked all the boxes for the program. Suddenly the phone rang, rousing me from my reverie. It was the school director. "Nicholas is an ambulance on his way to the children's hospital - he's had a seizure. No, I'm not sure how he is now, but I told the paramedics that you would meet them at the ER." I remember all these things: tight fists on the steering wheel. Counting out loud at the red lights, saying "Come ON". Fearing mad with worry that Nick had suffered more brain damage and that he would never again be the boy I knew. 

Nick's pre-school graduation photo

I raced through the sliding doors of the ER and I heard Nick before I saw him. His wail told me that my boy was OK - he was himself. The consultant neurologist recommended a watch and wait approach. "He may never have another seizure", she said. 

But Nicholas did have another seizure. And another. "It's epilepsy", the neurologist stated quietly. But I didn't want to hear her or accept her diagnosis. "I don't want Nick on this medication. I can handle anything about his disability...except's about my Dad..." and I started to cry. 

We are all products of our experiences and if we have care experiences that were difficult, or if our treatment choices turned out badly, or if we witnessed a traumatic event, then those things are going to affect our feelings and our choices as caregivers moving forward. We are human, after all.

In my case, it helped me manage my emotions to tell myself that each new diagnosis or symptom was unique. I was not reliving my past, I was helping someone I love to manage a deeply personal health challenge. I know that fear, even perhaps immobilizing terror will likely be a part of my future care role. But I've put a lot of time into reflecting on the idea that the past is the past and now is now. Somehow, that idea gives me some armour to wear when new symptoms arise and old demons threaten to haunt our family.


Jane said...

This is a remarkable perspective from which to view the challenges of being a caregiver. Having had several traumatic experiences related to the health of loved ones, I absolutely understand the triggering nature of navigating the caregiving path, and have had my own times of panic, thinking history will repeat itself. I hope to remind myself of this article next time I feel I am experiencing this.

The Caregivers' Living Room said...

Very best of luck with navigating. It's so tricky and yes, we always believe that history will repeat itself (I think that is so natural) including in my case, that I will not be able ACT. I really had to talk myself out of that one. Now, I feel competent with the situation but I always feel unnerved when some new symptom rears its ugly head, especially if I have some painful history of it.

Unknown said...

Yes, Saturday afternoon at Emergency, Ottawa General Hospital. Now we need to begin over, in a sense; Neurologist #1 who referred us to the Memory Clinic has retired. His associate who absorbed the practice won't handle ALL the previous patients, so we need to be referred BACK to the original practice, by the group to which we were this even possible! Sigh.

The Caregivers' Living Room said...

OH NO!!! This sounds like a nightmare. Does the Alz Society have any local assistance with health care navigation? I'm so sorry this is so hard. Just shouldn't be.