“I think I’m going a little squirrely,” Mom used to say when I “misbehaved” in my late teens and early twenties.
I drove her crazy. I stressed her out. Maybe you react in the same way to someone you know who is living with dementia.
When we’re stressed, we feel out of sorts: our heart rate increases, we breathe more rapidly, our blood pressure goes up, we go into “flight, fight or freeze,” we manifest all kinds of unhealthy and uncomfortable symptoms.
On the rare occasions that mothering me got the better of her, Mom got stressed. She felt like she was going a little nuts. My guess is every dementia care partner feels the same way from time to time, maybe even all the time if their situation has spun out of control.
The Centre for Studies on Human Stress developed a “NUTS” mnemonic to explain what’s going on when stress sets in and things go squirrely.
NUTS, which encapsulates a universal recipe for stressful situations, comprises four main “ingredients:”
No wonder care partners–both those who live with dementia and those who are sharing their journey–get stressed and anxious. It’s normal. It’s expected. It would be abnormal if we didn’t get stressed.
Care partners without dementia are thrust into completely new “careers”. We’re drafted into playing parts we never would have dreamed of auditioning for, but here we are in supporting roles not knowing the lines or even the plot. As the disease evolves in our loved ones, we face unfamiliar twists at every turn.
Many care partners, including myself, never cared for anyone else before they began caring for a loved one with dementia, and most have no previous experience with the myriad forms or the diseases that cause them. We deal with things that often seem random and unpredictable – and we do it every day, sometimes for years and years, sometimes for decades. Who wouldn’t be stressed? It’s normal.
We question our own competence because we constantly feel like we’re failing. Successes are hard to identify in “dementia land” where we wage a never-ending losing battle against insurmountable odds. We’re in the trenches, and there’s no way out. Do we get stressed? You bet. It’s normal.
At the same time, people who live with dementia likely experience even more stress than we, their non-dementia care partners do.
Living with dementia is a completely new experience for them, as it is for us.
Many are justifiably terrified in the early stages, and in the later stages everything must feel strange to them all the time. They may or may not recognize the people around them even when they’ve seen their faces over and again – the hundredth time may be just like the first. Imagine meeting dozens of new people every day, day after day, for the rest of your life… How stressful must that be?
Their world becomes completely and totally unpredictable – everything is unknown, everything is chaotic from one minute to the next. Their own behaviour, moods and emotions are as much a roller coaster to them as they are to us. Nothing can be explained. Most things are confusing.
If that’s not enough, we speak about them as if it not they’re not there when they are; we treat them like children; diminish them by using pet names and terms of endearment; infantilize them; tell them what to do; take away their independence; and punish them for behaviours that would be considered acceptable for anyone else in similar circumstances.
What must their stress levels be like, simply by virtue of the fact that they live with dementia? How much more difficult must it be for them to cope as the disease progresses? No wonder they get anxious – It’s a normal response to the challenges they face.
One thing we can do as dementia care partners is take steps to reduce our own stress so we are better equipped to deal with it in those who live with dementia.
Think about it.
For the story that goes with the nutty squirrel in the photo at the top click here.