“Pain is inevitable, but misery is optional. We cannot avoid pain, but we can avoid joy” – Tim Hansel.
In nursing, we have it drummed into us from Day One.
“Pain is what the patient says it is”
It’s a quasi-quote from a very old piece of work from 1968, written by a nurse called Margo McCaffery. It was quite revolutionary in its time.
What Ms. McCaffery so eloquently advised was what nurses have been doing for hundreds of years. Listening. Imagine that! Actually listening to what sick people are telling us. But what if “the patient” can’t tell you what it is? We have pain scales with number grading. We have scales for children with pictures instead of numbers.
Pain in your loved one with FTD is often quite the dilemma. Particularly when they have aphasia and can’t tell you what’s going on. When my husband’s wisdom tooth started to become painful in Year Four, he would point at the back of his wide-open mouth and grunt. I took him to our regular dentist. That in itself was interesting. They had not seen him since his FTD had become so advanced, more than six months before. They were very accommodating and treated him with great respect.
Long story short, the days and weeks after the surgery was one of the most difficult times throughout the whole journey through FTD. Being unable to understand the instructions given after the surgery, my husband tried to eat and drink everything in sight then complained about how painful it was on the side where the teeth had been extracted. I explained over and over that he needed to eat on the other side of his mouth but of course, he was unable to understand or process those instructions.
Dressing changes were hit and miss, depending on his mood. He accepted the pain medication but once it kicked in, he would eat on that side and start the whole cycle again. Ultimately he developed something called a ‘dry socket’ – a hole without a blood clot over the extracted tooth area.
Painful in the extreme. If you’ve ever had one, you’ll know what I mean. Imagine being in pain but thinking that no-one’s doing anything about it. No-one will help you. It hurts like hell. But the medication you took ten minutes ago isn’t working yet.
But wait, you don’t remember that you had some ten minutes ago. Now you’re mad. Mad at the person who is withholding the one thing that helps get rid of the pain. You’re mad at them. Why won’t they give it to you?
Agitation and belligerence ensue. What’s happening? All you know is your mouth hurts. You forget it hurts and then you drink a cold drink or chew your food on that side. Just like you always have. Only now it hurts. All the time.
You just want to yell and scream at the one person who can make it better. But they’re choosing not to. Why?
Why won’t someone make the pain go away?
The misery is not optional. Joy can be avoided by the person with FTD.
Pain must be endured. We can give medications as advised but cannot explain why we cannot give them when we cannot. Well, you can explain but your FTD’er won’t understand. You’re just being difficult – right?
I can’t give you an answer unfortunately. Pain is what we all say it is to us.
You, me, your loved one with FTD.
Your pain, of course, is very different. It can’t be helped by analgesics. In Part II, we will look at the pain you have, are having, and will experience throughout the course of your journey.
The pain of having your love tested to the point of physical sensation.
Love is pain too.
- Pages of Pain (lynnbowerdementia.wordpress.com)
- Pain Assessment & Pharmacologic Management Now Available Online From the Library (hmhlibrary.wordpress.com)
- Trying to make sense of life…going back to the beginning (dsnyfans.wordpress.com)