Vulnerability and Dementia

Vulnerability is Not a Strength - Mobius Executive Leadership

When I start a new blog post, I always try to think of something I already know rather than something I would have to learn. That’s not to say, I can’t learn anything new, it’s just that I am more confident when I speak or write about something I already know. I also like to use definitions so that my readers (as well as me) fully understand what I’m talking about. With that said, the definition of Vulnerability is “the extent to which changes can hurt or harm a person; the quality of being easily hurt or attacked

What brought me to write about this topic was due to a conversation Maureen and I had just the other evening. You see, for those that don’t know, Maureen and I got into a relationship long after I was diagnosed with Alzheimer’s and as recently as last year, diagnosed with Vascular Dementia. (I could spend a whole blog post on “ALL” the things I have wrong with me, but as Maureen says, “you’re just bragging, now” so I try to keep it simple. 🙂

One of the things Maureen recently brought up to me was, the future. The conversation started with talking about how our relationship was going to change as I went further into this disease. I got very angry and yelled at her, “I don’t want to talk about THAT!” She asked why and I said, “someday, you are going to have to make ALL the decisions for me because I won’t be able to make them for myself and I don’t want to think that right now. Our relationship is going to be different when you are making those decisions.”

That’s when Maureen had an AH-HA moment. She said she went from worrying what it was going to be like for her to understanding what it will be like for me when that time comes. What it will be like for me is Vulnerability.

Here is a prime example of my trust in Maureen. several months ago, I was asked to speak at Mease Manor, a Care Community here in Dunedin, FL. I actually don’t remember the details of this day, however, Maureen, being my BUB (Back-Up-Brain, a phrase I borrowed from @KateSwaffer) told me that we were going to Mease Manor where I was going to speak. Even though I had been there 3 times before and had made some wonderful memories and contacts with a number of people (especially Quyen Trujillo) I had no recollection of where Mease Manor was nor did I have any idea what I was suppose to speak about. All I knew was Maureen said we had to go there and I trusted her enough to just say, “OK” for I knew she would not lead me into any harmful situation. That’s “MY” definition of Vulnerability! 

I’m going to paraphrase for I don’t remember exactly what she said and since she is not here right now, I can’t ask her. It went something like, “you know, you put yourself in a vulnerable position, moving away from everything and everyone you knew in Pensacola to come here to Largo and start your life with me!”

Not once did I think Maureen was going to take advantage of me for the mere fact that the $1.10 I had in my bank account and my Social Security Disability was my only income, I knew she was joining me in this relationship for other reasons (my dashing personality and good looks) and I felt comfortable with that. Now, after journeying together down the Alzheimer’s Highway for a while, we have formed a very strong, trusting and loving relationship and my feelings of vulnerability have decreased to a point to where they are almost non-existent. 

I know that I am going to still experience some insecurities when Maureen is out on business appointments and I have to make decisions on my own here at home. Those decisions won’t be earth-shattering but I will still still stress over deciding what I should do.

I’ve always been an anxious person going all the way back to my childhood and it has become more prevalent now with my Alzheimer’s. What I don’t worry about is when Maureen returns home, I can discuss my decisions with her and she can then help me sort things out. She’s really good about doing that. What she won’t tell me is, I’m wrong but she does enjoy laughing at some of the decisions which makes me feel good.

Another thing I love about our relationship is that we do a lot of planning. Maureen runs her own business, Caregiver Support and Resources, so she has to stay on schedule. It helps me to stay focused on what has to be done that day, and what I can start preparing for the next day. It’s something I was never good at before but now, I am thankful that I’ve grown accustomed to it.

I know I am going to be faced with more vulnerabilities as I travel along on my Alzheimer’s Journey but having Maureen as my “Travel Partner” (I guess I’m going to have to add that to her Titles) I feel confident that she will help get me over any hurdles that we face.

I would also like to add, if this topic resonates with you would like to reach out to us, please feel free to leave comment, drop us a line @dementiastrong@gmail.com our visit or Facebook Page @https://www.facebook.com/WeAreDementiaStrong/

Until Next Time . . .
PEACE!
B

And the Question Is …

Anti-Defamation League | COVID-19 Response | New York/New Jersey

A continuing conversation has been taking place throughout the Dementia world. It’s more of a question than anything else and that question is, “How is COVID-19 affecting you?”

As an Individual living with Alzheimer’s and Vascular Dementia, I can honestly say it has taken its toll. But it doesn’t just affect those of us with a Dementia-Related Illness. It affects EVERYONE.

Let’s start with human interaction. I miss seeing my friends. When I do, instead of getting a hug, it’s either a fist or an elbow bump. For someone like me who is a hugger, I miss that, as I’m sure many others do. I know why everything has become so sterile and I understand that, but when will all things return to normal? WILL they ever return to normal?

It has also affected my Advocacy. I used to be able to travel to the destination, stand before a live audience of hundreds of people and deliver my presentation. I could easily interact with the audience and feed off their energy. Now, due to COVID-19, organizations have had to, painfully, cancel their in-person conferences and hold them virtually. Now we sit in front of a computer screen on ZOOM, Go To Meeting, Facebook Live, Skype as well as many other platforms staring at people in little boxes. It takes a bit of getting used to but, it has now become the norm. Will this become the “Forever Norm”? We will have to wait and see.

Another thing that affects me is my anxiousness. I have to admit, I was an anxious person before my Alzheimer’s diagnosis but my Alzheimer’s added another layer to it and in certain situations, it gets bad. If you’ve ever seen the movie, “Rain Man“ when Dustin Hoffman’s character goes into his anxious episodes and starts rocking back and forth, I am told that is what I do. At times I can hardly speak. Something as simple as going to the grocery store, I wear a mask but I also bring wipes to sanitize the basket or use the wipes the store supply. I know at places like Publix, they sanitize the baskets but what if they miss a spot? I can’t and won’t take that chance. Public Restrooms? Forget About It!!! If it’s not an emergency, I’ll wait until I get home. When I get back in the car I immediately use our hand sanitizer to wipe down my hands and arms. By the time we get home, I’m exhausted.

It’s hard to visit anyone nowadays, especially if you have a loved one in a Care Community. The only way to see them and communicate with them is through a window. It’s better than nothing but what about their human interactions? They surely need it more than we do. It is what it is and hopefully, one day in the near future, it will get back to normal, whatever normal will be.

In the meantime, I’ll keep sanitizing, wearing my mask, sanitizing, keep Social Distancing and keep sanitizing. Did I mention that I sanitize?

On a serious note, don’t forget to sanitize and sanitize often. You can never be too careful.

Until Next Time,

Stay Safe … and SANITIZE!

PEACE,

B