At the window with Dementia - Episode 2 "Window Perspectives"

An explanation of how being "at the window" is actually a metaphor for different perspectives of dementia.

Transcript

So as I was thinking about what I wanted to talk about on today’s podcast. It occurred to me that maybe what I should talk about is why I named this podcast At the window with dementia. Well, let me give you a little bit of history on this. So, I run a support group, and right now, during COVID-19, a lot of the members of this support group have family members that are currently residing in nursing homes, and nursing homes have developed a way for family members to go ahead and visit their loved ones.

And some of them go ahead and schedule visits, and some of them spontaneous visits are okay. But because of COVID-19 and the virus and how contagious it is, the visits can be done in person, at least not within close proximity of people. So what they do, is they go ahead, and they allow people to have visits at the window.

With some people, this is really helpful because it allows them to lay eyes on their loved one more than they feel that they’re connecting via zoom or FaceTime or some other platform, but for some people with dementia, it really is disorienting, and because of that, some of the nursing homes have actually requested that they not have family visits.

And to that point, some of the family members find it very difficult to go and do these visits at the window, because they feel that it just really puts an exclamation mark on what’s going on in the distance between them and their loved one. So I started thinking about this term, at the window, and aside from the obvious of visiting at the nursing home, it really symbolizes so much more, the more I thought about it, so, it also symbolizes, where are you at in terms of dementia, are you on the outside looking into a world that you have no connection to? Maybe you’re fortunate enough that you don’t know anybody who has this disease, or maybe you’re young and your siblings, your parents, no one has come across this diagnosis.

Maybe I hope that’s the case for you, but if you’re listening to this podcast, chances are, that’s not the case. Perhaps you’re on the other side of the window, maybe you’re the caregiver, and maybe all of a sudden, you feel very confined and isolated, and maybe you feel like looking out the window is looking at the world outside that you once were part of but now you’re not. And then there’s the possibility that maybe you’re the person with dementia, and maybe as you look outside that window, you don’t understand what you see anymore.

Maybe everything that used to make sense to you now is foreign. So for all those reasons, I just thought that the title at the window with dementia was so appropriate.

I find that it’s a fluid situation, from day to day, you can find yourself in various locations, maybe some days you’re outside, maybe sometimes you’re inside, maybe you feel like you have one foot in each location, maybe you go out to work, and you live a semi-normal life, and then you come home, and you’re the caregiver, and now you have a different hat on, and now, you feel confined and restricted and confused and frustrated, and definitely tired. All of those are completely normal, and honestly, anyone who says that they don’t experience all of those emotions plus so much more probably isn’t either being honest with you or honest with themselves.

It’s a difficult journey. I say this all the time to my support group members, and to the family members of my patients, unlike me, who made a deliberate choice to get into health care, most people suddenly find themselves in the trenches of health care as a caregiver, frontline, the eyes, and ears for the healthcare providers like myself.

It’s your gut intuition to tell us if something’s changed if something’s wrong if something’s going on, maybe you’re not sure what it is, but you know what’s going on, is not normal for your loved one. So again, you’re at the window looking through trying to make sense of things.

And then there’s the possibility that maybe in your future, maybe you’ll be the one who someone is going out to work and coming home and taking care of you.

That scares me, I try not to dwell on it. But honestly, sometimes I can’t push those thoughts far enough away. It’s a reality. Dementia is a pandemic in my opinion, yes, right now everyone’s so hyper-aware of COVID-19. And certainly, I don’t mean to take anything away from the virus and the ripple effect that it’s causing to everybody, not only those who are infected but those who are at home and can’t work, can’t provide for their families, can’t go and get their health screenings, can’t do anything that we know that we should be doing or we used to be doing and that we can’t do right now.

My hope for you is regardless of where you are at the window, inside or outside, or like I said maybe one foot in both, that you’re taking care of yourself that you are making the connections you need to make that you have an outlet, that you’re not only the caregiver, but you’re providing self-care for yourself. Anyway, that’s why I named this podcast At the window with dementia. I hope that you’ve come back regularly. We have a lot to talk about. Thanks so much, be sure to check out my Instagram, my handle is compassionate_ education, and my website is compassionateeducation.com

If you have something that you want me to talk about please, go right ahead and send me a message. I’d love to hear from you.

Take care, and have a great day.