The Risks We Weigh

The Moment I Realized I Was Protecting Him More Than Myself

Frank takes 15 different medications per day. That’s a lot of keeping track, renewing prescriptions, calls to doctors, and trips to the pharmacy. But I manage.

For months, Frank would absent-mindedly forget to take his pills. He needs consistency with his medications and I was not much better at reminding him. After the last time he forgot to take his meds, I went on the hunt for a pill dispensing method that would prevent missed doses. Eureka! I found an alarm-based pill dispenser that blares an alarm and dispenses his next dose of pills. It’s exactly what we needed.

Now, I refill the 28 small pill boxes once every two weeks and we have 14 days of AM and PM meds. The alarm is set to go off at 7:00 AM for his morning pills and at 6:00 PM to take his evening pills. Insulin is dispensed throughout the day using a pen injector and a syringe I prefill a week in advance every Sunday. Life with medicines is now a realistic and precise practice, leaving very little room for error.

About three months ago, something compelling happened at his neurologist’s appointment. Something that made me question my own sanity. For this appointment, his daughter, Cesca, was present and son, James, was listening in by phone.

Frank had had a significant mental decline in the two months leading to this appointment and the doctor recommended the drug Risperidone which carries a “black box warning.” This means that the drug carries a risk of increased mortality in elderly patients with dementia-related psychosis – not a comforting risk to assume. We all had very mixed feelings. While the medication was effective for aggressive and hard to control behaviors, the question came down to whether or not it was worth the risk. The risk, while small (1% risk of death; 2% risk of stroke), was still a significant possibility.

After discussing the pros and cons, I heard myself say, as if elevated to the ceiling of the room looking down,

“I don’t want him taking any medication that can harm him to make my life easier.”

I’m not sure where that came from and I hadn’t intended on making this declaration but in the presence of the doctor and his children, I just blurted it out. No one said a word. No one even acknowledged what I said. It was just hanging there and I didn’t know how to move past it.

God forbid I should try to make my life easier, I mused in my thoughts. Why didn’t I embrace a little ease for me? But, in truth, I didn’t want Frank to take this type of risk at this stage of the disease. From what I had read, Risperidone was highly effective but it seemed to be introduced in the later stages of the disease when quality of life issues become more prevalent.

In all honesty, I felt I could handle Frank. Yes, his delusions were getting more regular but I was navigating my way through them. Waiting until quality of life issues become paramount made sense to me and all the other players involved.

Frank didn’t speak; he never did. I hated that. He never advocated for himself in his doctor appointments. I assume he trusted me, or us and stayed silent. More pressure was felt by the others on his behalf but we didn’t mind.

In the end, the neurologist decided on an alternate medication that is almost always used in conjunction with another he was already taking. That made us all breathe a sigh of much needed relief. At least, for now, his current dose seems to be making a positive difference in his life.

What more could we ask for? A bit of ease for me? It would be nice. But not at his expense.