One of the things that makes me angry about having Alzheimer’s Disease are people that DO NOT WANT TO UNDERSTAND that I, and people like me, still know what’s going on around them and can still carry on an intelligent conversation. Sure, the words may not flow as evenly and smoothly as they did before, the mind may not allow us to remember the conversation an hour or a day or a week from now, but we still enjoy being in the moment.

Before my diagnosis, I had friends . . . lots of friends, or so I thought. These people who I thought were friends kept in contact with me, returned a phone call whether or not I left a message, would interact me with through Social Media or in person. Where in the hell are these people now? I have no idea. Don’t get me wrong, I’m not mad that these people don’t talk to me anymore, I mad for the reason they don’t talk to me anymore. There’s a difference , and in addition, I feel sorry for them.

stigma-tmpwimi-wb-squared1People that don’t understand something or have misconceptions of something tend to make their own decisions about that something. It’s called STIGMATIZATION!
(WOW, the Alzheimer’s Guy knows a big word and can use it properly in a sentence. Imagine that?)
When it comes to Alzheimer’s Stigma, the Alzheimer’s Association does a great job of describing it and how to deal with it here : Alzheimer’s Stigma @alz.org

Here are a couple of examples of stigma the Alzheimer’s Association uses:
A diagnosis may test friendships. Friends may refuse to believe your diagnosis or withdraw from your life, leaving a feeling of abandonment or isolation.
The first part of this I believe to be true.
The 2nd part about isolation and abandonment is not. My wife and kids, as well as the friends that have stuck with me, and some family members, have not allowed me to feel abandoned and/or isolated. I am thankful for their continued presence in my life.
I can’t say the same for others.

– Relationships with family (and friends) may change. Family members (and friends) may not want to talk about the disease, perceive you as having little or no quality of life, or may avoid interacting with you.
This is the biggest issue. I really feel that most of my friends just don’t know how to deal with my disease, or just don’t want to deal with me having the disease, so they just don’t deal with me at all.
This was one of the main reasons I created a Facebook page. I still post “some Alzheimer’s related things” on my profile but my Facebook page is strictly for Alzheimer’s related information. Due to lack of engagement on my Facebook profile, I felt people would rather read about family and funny things instead of the reality of Alzheimer’s.
In case you’re interested, my page is: My Alzheimer’s Journey

For more examples and information on Alzheimer’s Stigma, go to: Alzheimer’s Stigma @alz.org

All of this is glaringly evident to me since I no longer work and since I no longer drive. It’s not like I stay at home and do nothing. I spend a lot of my time researching and Advocating for Alzheimer’s. For me, my Advocacy has turned out to be the best job I have ever had without getting paid and has introduced me to some pretty wonderful people, both with and without Alzheimer’s.

You see, I’ve learned to overcome the Alzheimer’s Stigma. It took me a little while and because I still retain my long-term memories, I still miss the friends I “used to have” but it hasn’t stopped me from living. I’m still active on Social Media, I still make phone calls and leave messages, I still wait for the phone to ring from the people that say they will call me back.
Does the fact that my phone goes days without ringing  make me feel sorry for myself? No!
Does it piss me off? Sometimes, but all I can say to that is, it’s their loss.

My life is simple now. It’s not what I envisioned my retirement to be but just the same, it’s simple. I live with 3 amazing people who love me and take care of me, and I have my little furry friend who is always by my side. He’s also an excellent listener.

wpid-screenshot_2015-01-11-09-58-30-1
I know the world would be a much better place in which to live if there were no racism, no inequality in the workplace, no unnecessary violence, and if we could all gather as a world and join hands every once in while and sing Kum-Ba-Yah.
Until that happens, just do me favor . . . just because someone, a friend or not, has a disease, do not abandon or isolate that person. There is a great chance if the tables were turned, that person would stick by your side.

PEACE,
B

 

 

17 thoughts on “The Angry Side of Alzheimer’s

  1. I truly believe that it is more about them than anything. When Mother was still here, I was usually the only “visitor” she had. I always felt like it was tough on family and friends to see the progression of the affects I who she once was. It’s a shame, because her sweet face would light up when she saw them, although she wouldn’t remember it as soon as they were out of sight. It was definitely an in the moment event!

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  2. Brian your transparency is amazing. You’re an inspiration! I love your posts 🙂 I’m glad to know you. Thanks for ALL you do for Alzheimer’s!

    Sent from my iPhone

    >

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  3. I accompanied my mother through more than ten years of Alzheimer’s. She was abandoned by just about everyone, including her second husband, by the end. There is a cultural problem accepting natural infirmities. Like memory struggles, my severe hearing loss makes demands on friends. I can’t hear in noisy places. I don’t enjoy concerts, restaurants, and movies. I’m grateful for social media. I also admit that I struggle to avoid rejecting myself for being “flawed.” I will visit your FB page. Thank you for helping so many of us remember.

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      1. No…thank you! A co-worker once told me (n I never forgot)…”there’s no accounting for undeveloped people” …and, of course, she wasn’t talking about people who are affected by disease or handicaps. She was talking about people who have no tolerance or understanding of our natural differences! That statement has kept me “whole” for the last 15 yrs. Right into my “early stage dementia” …that has helped me be tolerant (but not accepting) of “intolerance”…underdevelopment! YOU r more than most people deserve, right?

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  4. Yes, and I can tell you from personal experience that it breaks the hearts of care partners without Alzheimer’s as well. With the exception of one or two, my mother’s wide circle of friends evaporated.

    The other sad part is these people don’t know what they are missing. I’ve discovered great joy and healing during the last few years with Mom who is now in the later “stages.”

    Besides addressing the stigma, I think we also need to “train” people in how to behave and interact with people who live with dementia. I think many people withdraw through misunderstanding, fear and simply not knowing how to go with the flow of someone else’s changing reality.

    I wonder if you have seen this gone-viral video on the same subject:

    http://myalzheimersstory.com/2016/01/15/they-may-forget-and-we-should-reach-out/

    I have subscribed to your blog and look forward to future posts. Thanks.

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  5. I think the relationships we maintain and the new friends we meet through this disease become more important, and intimate relationships develop not commonly found in the world outside of dementia.

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  6. I’m entirely new to the world of blogging and came across yours. I’ve sat here and read every single post! I think that both the way that you deal with and write about Alzheimer’s to be truly inspirational.

    I shall continue to follow your journey with all the support of a friendly stranger :).

    JustHerMum.

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    1. Thanks for taking the time to read my blog entries. The way I write is raw, open and honest because I feel anything else would be painting a different picture of what Alzheimer’s really is.
      Im working on a new entry which should be done by the end of the week. I’ll look for your opinion! 😎

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    1. Al,
      Thank you for sharing your comments about your brother. I’m sorry he had to go through what he went through.
      You are more than welcome to jump on my bandwagon and journey on with me. Sharing my story, advocating for Alzheimer’s is what fuels me. I have so much to say and not sure how much time I have to say it so, I’m on a mission.
      Thanks and feel free to to share my blog with anyone you feel it wold help!
      B

      Liked by 1 person

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