It’s been way too long since I’ve posted here! I’ve been debating about whether or not to keep going, as I’m back home and unfortunately no longer with my loves. However, there’s so much more that was learned that I didn’t have time to share, so I decided to keep it up! That and I’m hoping to get a job in the field here, so I will ideally have plenty more to write about in the near future 😉
When I first started working with patients back in 2012, I remember having mixed feelings regarding visitors. Some family members would come to il Rifugio every single day, others occasionally, and some I had never met at all. The same held true this past trip.
I understand that it’s difficult; the illness’s impact on relatives and caregivers can be crippling. Of course, then, the thought alone of the possibility that a loved one may be showing signs of it is terrifying. In fact, a recent survey revealed that people fear being responsible for someone with Alzheimer’s more than they fear actually having the disease themselves. :-O No wonder some have a hard time visiting!
I’ve learned from observing their interactions, though, that the relationships family members have with their ill loved ones can be some of the most beautiful and heartwarming ones to witness; I promise that it doesn’t have to be frightening. What determines where these relationships fall on the scary scale is simple: the approach.
Though we as caregivers may be painfully aware of the change in our nonna or nonno’s condition, they are not. Lucky for them, patients themselves lack this kind of insight; anosognosia is a condition that accompanies dementia and refers to reduced awareness of symptoms. Even in earlier stages, when one may recognize that something isn’t right, they aren’t entirely sure of what’s actually wrong. More important to keep in mind is the fact that they likely don’t care. Anosodiaphoria is also present with dementia, and it refers to a lack of concern about the consequences of these cloudy symptoms. As Dr. Taylor writes in the midst of his own battle with Alzheimer’s:
“Caregivers have pointed out to me a number of incidents during which I was unaware of what I was doing. Even more amazing to me, when told what I did, I didn’t seem to care! And, as a matter of act, I really don’t feel like I should care right now… It is simply amazing to be aware of what you don’t want to do, and when you do it, not to care one way or the other… I have wandered away and didn’t care, and I don’t care, although it sure upset a lot of other people. I didn’t get upset about it. I was not and am still not afraid. Others are upset and afraid for me.”
While we understand facets of our loved ones’ conditions, it’s important that we recognize that they do not and that we treat them accordingly. When your nonna asks you for the fourth time that day if you’ll be eating lunch together, try to keep your patience; don’t allow aggravation to overcome your emotions. Instead of answering frustratingly and asserting that she knows you always eat together, keep in mind that unfortunately she may not. Not anymore, at least. When your nonno insists on wearing a button down and nice slacks every day, refrain from trying to convince him it’s unnecessary; allow him to be comfortable. Compliment him. Ask for his opinion of your own outfit. Whatever you do, respect his harmless decision and thank him for passing his sense of style down to you. Above all, for your own health and sanity, try to remember that the difficulties you’re facing are part of the disease process, not part of the person. Per favore, approach your interactions accordingly.