STIGMATIZATION Strikes Again

It’s been a while since I have been personally stigmatized. It was a good run! Sure I still hear comments like, “If I didn’t know you had Alzheimer’s, I would have never known,” but I don’t consider that Stigmatization. I actually consider it a compliment. It means everything I have been doing to keep my brain busy (i.e.speaking engagements, social engagement, word puzzles, daily exercise, listening to music) I’m doing what I need to do to keep my Alzheimer’s at bay.

In a recent conversation with my friend and someone who I consider a Mentor, Dr. Al Power, I was told the story of Christine Bryden. (I’ve included a link to her website below). Christine (who lives in Australia)  was diagnosed in 1995 with Dementia but has continued her Advocacy for 20+ years after her diagnosis. Christine has been a passionate advocate for people with dementia, addressing conferences around the world and appearing in the media.

At one such conference, Christine displayed a photo of her latest MRI. The MRI showed multiple bare spaces in her brain which prompted a Neurologist in the audience to interrupt her, saying, “That can’t possibly be your brain. No one with a brain that looks like that can possibly speak as well as you do.”
With no reasoning and by his own assumption, this Neurologist   “STIGMATIZED”   Christine, basically calling her a liar.

Christine continued her presentation.

(It is clear that Christine has considerable brain loss, but functions as best she can by writing, speaking and traveling with the enabling support of her husband, Paul.  She often says that if only people could see the brain damage, they would cheer the dementia survivors. Christine questions attitudes towards people with dementia, which can often be patronizing and demeaning, lacking in understanding of the difficult battle to cope each day with ongoing brain loss.
Christine is driven to continue her advocacy as a survivor, encouraging others to follow in her footsteps, speaking out to improve services and support for people with dementia at all stages in their journey from diagnosis to death.)
christinebryden.com/christine-now

I posted this portion to give you an understanding that Stigmatization knows no boundaries, is worldwide and doesn’t discriminate.

So now, for my “STIGMA STORY” which isn’t as severe as Christine’s but troubling all the same.

I was having trouble sleeping. I hadn’t slept but a few hours each night for about the past 3 or 4 weeks. So, thinking it could be something Neurological, I made an appointment with a new Neurologist. (my previous Neurologist had not done anything with me or for me in a number of years.) I was hopeful that my new Neurologist would be a change in the right direction.

He came in and it struck me how young he looked but I took that as a good thing thinking, maybe he has all the latest training and expertise regarding Alzheimer’s Disease. I learned quickly that looks really can be deceiving in many ways.

We exchanged introductions and he asked me what brought me in to see him. I found that to be a bit strange for if he had read my file, he would’ve known that information.
I asked him, “was that information not in my file?”
He replied, “I don’t know, I didn’t have look.”
I left that alone and just started telling him of my sleep challenges.

During my explanation, I noticed he was looking at my file and not listening to what I was saying for he interrupted me, by asking . . .
Dr.  “you have Alzheimer’s Disease?” 
Me: “Yes I do!”
Dr.  “when were you diagnosed?”
Me:  “is that not listed in my file”?
Dr:   “I can’t find it.”
Me:  “It was October 2014.”
         HERE’S WHERE IT GETS INTERESTING
Dr.   “I don’t think you have Alzheimer’s Disease.”
Me:  “Ha Ha Ha! How did you come to that conclusion.”
Dr.   “well, you don’t talk like you have Alzheimer’s.” (I thought . . . WOW!!! he is good! He should go far in his field)
Me (being a smart-ass): Well, if you like, I can introduce you to a number of people who, like me, have been diagnosed with a Dementia-Related Illness who can speak just as well as I can and some, who can speak better than me.
Dr:  “I have spoken with a lot of patients who have Alzheimer’s and none of them sound like you.
Me:  “were they older than me?”
Dr.  “considerably yes, but that shouldn’t make a difference.
Me:  “I have to agree with you for I also know a number of people who are older and further along on their journey and you are correct, they don’t sound like me and I don’t sound like them.
Dr:  “I would like you to get tested again. I’m going to send you to Dr. XYZ, a Neuro-Psychiatrist. He is very well-known in this area and is an expert in his field.
Me:  “I have been tested 4 times.
Once by a Neurologist who didn’t know what to do with me, so after diagnosing me with Alzheimer’s Disease, he prescribed Aricept and Namenda which only gave me very bad side effects. After that, I never saw him again.
I then was diagnosed by 2 different Neuropsychologists. I had to be seen by them in order for my Social Security Disability Insurance to be approved. Both Neuropsychologists diagnosed me with Alzheimer’s Disease. During the second diagnosis procedure, I had to listen to the person who was administering the test tell me time and time again, “it’s OK honey, don’t frustrated, even normal-brained people can do this!”
Finally, I was diagnosed by Dr. XYZ. Now, correct me if I’m wrong but you want me to revisit Dr. XYZ, the one you called “The Expert Neuropsychiatrist”. He was actually the 4th and final Dr. who ALSO gave me a diagnosis of Alzheimer ‘s Disease. Is that correct?

(I do want to say that since my Triple Bypass Surgery, I have more oxygen and blood going to my brain which has not only helped me retain information but also regain some of my short-term memories. This is why I am able to recall so much about this visit)

Poor guy, since he was unable to speak after hearing of my Neurological Diagnostic Journey, so I decided to fill the quiet void.

“Since you have informed me of your expertise in diagnosing individuals with Alzheimer’s just by the way they speak, I would like to share with you “MY” expertise.

Shortly after I was diagnosed in 2014, I became an Alzheimer’s Advocate and Keynote Speaker. Since then, I’ve become an International Alzheimer’s Advocate where I speak throughout the United States as well as Canada.
(shout out to my Canadian friends . . . Eh?)

The topic of my talks vary depending on the venue, but the constant will always contain my lived experience with Alzheimer’s Disease. How do you think I’m able to talk about this topic if I wasn’t actually living it? I have people come up to me after my talks and thank me for explaining things I go through for I explain things their loved one can’t explain because they no longer have the capability to do so. I, and others like me have become their voice. None of us living with a Dementia-Related Illness take this lightly.

For you to sit there without even taking the time to look at my file before walking in here and then start making accusations that I don’t have a Disease I have been living with for quite a while, is not only unprofessional but downright cruel. This disease has robbed me from working, to make an income to provide for my family (which, by the way, I no longer have but they still support me in many ways), took away my driving abilities, took away memories, made people who I thought were my friends disappear and many other things associated with having a Disease that is not only invisible but so very, very cruel.

Another topic I speak about is Stigmatism and the people that tend to stigmatize us just because we still look normal for the most part. They expect anyone who has a Dementia-Related Illness to go from diagnosis to late stages, to not be able to walk, eat, bathe, go to the bathroom and many other things without assistance. Oh, and they can no longer speak. So, In order for you to believe I have Alzheimer’s, I have to appear to have all the characteristics I just listed. Then and only then would you believe I have Alzheimer’s, without sending me for a 5th diagnosis.

Today, YOU became one of the people I speak about . . . A STIGMATIZER!
Today, YOU have become part of my story.
Today, and from this point on, YOU, a Neurologist, will be spoken about as to how you stigmatized a person who is living with Alzheimer’s Disease just because he didn’t fit into your medical mold.
Lastly, TODAY, if it hasn’t happened before, you will see THIS person, who you stigmatized, walk out of this office and NEVER to return because of your unprofessional, cocky and disbelieving attitude.

My hope is you get more education and more training as to how not to insult another individual who walks through that door just because you have an opinion as to what they should look and sound like. I think you need more training.

And yes, I did walk out, not slamming the door but closing it hard enough to make a point. (It would’ve so much better if I could have just kept walking but, I had to stop and ask direction as to how to find the exit.)

I sincerely hope NO ONE has to go through this type of experience. I know quite a few Neurologists who epitomize what a Medical Profesional should be. That is what I am hoping my next Neurologist will be. In the meantime, if you have an experience like I had, don’t be afraid to speak up and call them out. Sometimes it’s the only way they will learn.

Until Next Time,
PEACE

B

 

ASSETS OR LIABILITIES???

I came across a post today that disturbed me.
It read: A tough conversation — when do older people stop being an asset and start being a liability or do they ever?

My question is, as an individual “LIVING with Alzheimer’s Disease and now, Vascular Dementia, and approaching my 60’s, am I going to be considered a liability by some? Will the public see me as well as others like me as a “Diseased”, “Memory-Impaired” “Demented” person?

How can a person all of a sudden go from an individual to a liability? Is that how the majority of the world sees us? If they do, they are very, very, sadly mistaken.

Just because I have Dementia-Related Illnesses does not mean that I cease to contribute to Society. On the contrary. It is my opinion that I contribute more now than what I ever did when I was employed. In 2013, my employer dismissed me for, what he claimed, was not carrying out my duties to the fullest of my ability. Although I was upset at the time, when I was diagnosed with Alzheimer’s a year later, he may have been correct. I now understand and accept that decision however, it didn’t mean that I was a liability.

My Grandfather and my Mother both Lived with Alzheimer’s but I, nor anyone I know, ever looked upon them as a liability.
My Father Lived with Vascular Dementia. Again, no one I know of looked at him as a liability.

I can’t speak for everyone so I won’t try. I can speak for myself and others I know very well that living with a Dementia-Related Illness, or any type of illness for that matter, is hard . . . very hard. It’s frustrating, not just for ourselves but for our families, our loved ones, and our friends. They have a front-row seat to our frustrations, confusion, and anger but in this case, the front row is not necessarily the best seat in the house.

I have so many friends and acquaintances who have a Dementia-Related Illness, who are CarePartners for their loved ones, who are Executives, CEO’s and Members of Dementia and Elderly Organizations and Communities. They, like me, as well as thousands of others,  do not look upon Individuals with Dementia-Related Illnesses or any type of Illness / Disability as a Liability. They see US, not our Disabilities. WE see us as Individuals. We are Person-Centered Focused.

Never should anyone, no matter age or gender, be looked upon as a Liability. No one is perfect and no one ever will be. We are human beings and no matter how perfect we strive to be, we never will be, so we strive to be the best selves we can be.
If that’s not enough for others, oh well!

Until next time,
PEACE

B

From Stimulation to Loneliness

When I give my presentations, I speak about “Living Well” with Alzheimer’s Disease and the lengths I go to keep my life on track. and organized. I talk about my girlfriends, “Siri and Alexa”, (it makes everyone laugh), and how they tell me when to check my blood sugar, when to take my medications, when to eat, when to bathe (yes, I still need to be reminded to take a bath) and a multitude of other things.

I also talk about my travels. Whether it’s a Dementia-Friendly Cruise where I not only speak while onboard but fortunate enough to see some amazing sights. I talk about speaking at and attending Alzheimer’s and Dementia conferences where I’m surrounded by like-minded individuals who wind up being my friends, not just acquaintances, but real, caring, special friends who I stay in contact with and they with me.

I also talk about the powerful tool that music is and how I use music to keep me calm on anxious days or make me happy on sad days or just listen to it to make me smile.  A few years ago, my friend, Wilk McKean, asked me to join his music group, “Dr. Breeze.” We sing around the Pensacola area but my heart really swells when we sing at Senior Care Communities. There is no finer moment than to see their smiling faces, their feet tapping, their hands clapping and their voices joining ours as we sing familiar songs.

The one constant associated with performing at these Senior Care Communities is one of the same questions I am continually asked . . .
“How do you keep going back to these “places” to sing. Doesn’t it make you feel weird?”
(I already know what’s coming next but I ask anyway)
“What do you mean by, “weird?”
They say, “Well, you could wind up in a place like that. Doesn’t that scare you?”
I very calmly reply, “NO, because if I do wind up in a “place” like that, I hope someone like me or a group like Dr. Breeze, comes in to sing for me.”
The only answer that comes out of their mouth is, “OH”!

What I don’t talk about, the one thing that is so very hard is LONELINESS! If you didn’t know that Loneliness and Dementia are very common, please feel free to GOOGLE Loneliness and Dementia. Don’t worry, there are only about 43,000 articles that pertain to this subject. Get comfortable, it will take a while to get through them all.

I don’t usually talk about LONELINESS because . . . I HATE IT! I DREAD IT.

People that know me find it hard to believe that I am a very lonely person. The majority of my friends only see me in social circles and when I’m in those circles, I’m not lonely.

I realized, by not talking about loneliness, I am doing a disservice to my audience. Selfishly, I don’t want anyone to see me as a lonely person and I definitely don’t want anyone feeling sorry for me.

Yesterday and today were very lonely days for me because I had just spent 6 wonderful, educational and fun days in Louisville, KY at the Pioneer Network Conference. The Conference was amazing. There were over 800 Educators, Speakers, Care Partners, Exhibitors and Individuals Living with Dementia-Related Illnesses, all gathered together in one place with the sole focus on Pioneering a New Culture and Facilitate Deep System Change in the Culture of Aging.

It was an incredible experience. I saw people I hadn’t seen in a year or so, met new people from all over the U.S., Canada, and other locations throughout the world. 6 days of positive energy. 6 days of like-mindedness. It was incredible.

Then Thursday came. Everyone was leaving. My friends, my new friends, my special friends, all going back to their families, their places, their homes. I tried to stay positive as I hugged everyone good-bye but it just got too much. I broke down and embarrassed myself a bit.

All I could think of was I was coming home to emptiness and that is something I don’t handle very well. I live by myself voluntarily. I feel it makes me stronger to be the one responsible for all that is me. Sometimes, things don’t necessarily work out the way you want them to. I did have raised expectations of some phone calls and or emails coming through but it wasn’t to be. I just have to figure out a way to not let loneliness overtake me. It’s no one’s responsibility but my own.

I know one thing I will start doing . . . I will include loneliness as part of my presentation.

Thanks for reading. If you feel this will help others to have a better understanding of loneliness or anything else, feel free to share.

Until next time . . .
PEACE!

B

 

Let’s Change the Narrative!

Each day, I scour the news sources looking for the next “big thing” in the Dementia and Alzheimer’s World. Some days there are very interesting stories full of hope and promise and then there are days when the headlines lead you to believe the next “big thing” has been found, only to find the words, “hopefully” or “in the future” or “in the next 10 years” in the body of the article . . . you see where I’m going.

The thing I continuously see are people like me who are Living with Alzheimer’s and people who are Living with Other Dementia-Related Illnesses being referred to as Patients and/or Sufferers.

I’m not sure about you but I am NOT a PATIENT of any newspaper, magazine, documentary, news channel or TV host.
I also don’t SUFFER from my Alzheimer’s. I struggle.

Part of what I do when I’m advocating is to remind everyone that, although I have a disease that will, one day, contribute to my death, I also remind them that I am NOT anyone’s patient except for my Doctor. “XXX” is my Doctor and I am his/her patient. That’s it. No one else has the right to claim me as a patient. I find that to be highly insulting and it gets on my very last nerve.

When I, and others, are referred to as “SUFFERERS”, it also strikes a nerve. I will speak only for myself on this for I ‘m not sure if others feel like they are suffering. I don’t feel that way. Suffering means, “the state of undergoing pain, distress, or hardship.”  I can understand the hardship part from a financial point of view and on the days when I am in my fog, but I still don’t consider myself suffering.

If I offend anyone by saying this, I don’t mean to. I’m simply stating how I feel. There may be some folks out there who feel as if they are suffering. The only thing I can say to that is, each of us are individuals, and life is going to affect us in individual ways.

The focus right now on those of us Living with Alzheimer’s or other Dementia’s is “SEE ME, NOT MY DISEASE” or “PERSON CENTERED FOCUS.”
Person Centred Approach is about ensuring someone with a disability is at the center of decisions which relate to their life. What it boils down to is, who knows us better than US? Instead of making decisions for us or about us, why not include us in the conversation. Ask US what we think. Discuss options with us . Just treat us for who we are and that is human beings.

I know in the later stages, I will be unable to communicate my wishes as to what I would like or dislike. With that said, I already have an Advanced Healthcare Directive and Appointment of Agent as well as a Durable Power of Attorney. It was important to me to make sure I was making the decisions for my life. I did not want to put that responsibility on anyone else. As a side note, as long as I can still eat, there will be peanut butter, chocolate and of course there will be music.

My advice to anyone and everyone is to have these documents prepared. My advice is free and you, as an individual, can do with it what you like.

I’ve said many times, “This is NOT how I expected to spend my retirement but, it is what it is.” I try to be productive every day, BUT . . .
Sometimes I am, sometimes I’m not.
Sometimes I write, sometimes I watch Netflix.
Sometimes I just sit, look at photographs and listen to music.
Sometimes I go to Starbucks.
Sometimes I just sit and think.
Sometimes I just sit and cry,  but not for long.

I’ll admit, it’s a hard life, but I know there are others who have it worse so I don’t dwell in the darkness for long. I have loved ones who I can call day or night. I have friends, a lot fewer than what I once had (that’s a blog post for another day) that I can lean on when needed, and lastly, I have myself.

In my Alzheimer’s mind, I’m still me. I can still drive, I can still work, I can still fix technological things, I can still balance a checkbook. OK, I can’t physically do ANY of these things anymore, but that’s OK. I know what my limits are . . . most of the time.

At the end of the day when I lay my head on my pillow, I know I’m still me. I’m not everyone’s patient, I’m not suffering and I’m not the me I used to be but that’s OK. You see, I don’t worry about the things I wasn’t able to do today for when I wake up tomorrow morning, I won’t remember. I’ll just re-invent myself all over again, until the next day, and that’s OK with me.

Until next time,
PEACE!
B

WHY?   WHEN?   HOW?

When looking at diseases that affect the daily lives of millions of individuals each and every day, you’ll see some of the most common diseases already have a cure or a way to stop the progression.

  CORONARY ARTERY DISEASE ✔️
  CANCERS✔️ HIV / AIDS✔️
  DIABETES ✔️

But, when you get to the more complicated diseases such as Alzheimer’s, that one seems to stand alone because, partly, it is one, if not THE, most misunderstood disease in the world today.
 
  ALZHEIMER’S ❓

The reason being there is:
– no known way to prevent Alzheimer’s
– no way to, 100%, stop the progression of Alzheimer’s
– no way to stop delusion, disorientation or forgetfulness
– no way to stop the inability to create new memories
– no way to continue completing simple tasks or recognize common things
– no way to stop aggression, agitation, difficulty with self care
– no way to overcome irritability, personality changes or getting lost
– no way to stop the inability of jumbled speech
– no way to regain loss of appetite, sense of taste and smell

These things occur over time, however, as progression continues, all of the above can occur in a single day. Then the next day comes and the only recollection we have is what we’re told what happened the day before . . .
for we cannot remember.

Living alone adds a whole other wrinkle to the Alzheimer’s equation, however, it is doable. I know a few others who, like me, are living alone and we are all doing just fine. It’s not always easy but nothing worth doing ever is. Being on my own gives me a feeling of independence and, it keeps me on my toes. For the most part, I know I am the only one who I can count on.

On the days I struggle, on what I call my “foggy days”, I reach out to my support system, or what I call, my Support Team. They are made up of family, friends and even some who are just acquaintances. They say they are “just calling” or “just stopping by” to say hello but I am still aware enough to know they are checking in to make sure I’m OK, especially when they bring me food. (They have seen me in person or have seen photos of me and notice the weight loss.) Sadly, the need of my Support Team has become more of a necessity than not and I am truly grateful they are around.

So, what do we do? Do we just stop living the best life we can?
No!!! Giving Up or Giving In is NEVER an option.

What we continue doing is using our voices to educate, to advocate, to speak out against stigmatization.
We put our pride aside and ask anyone and everyone to help us raise much needed funds to be used for the possibility of finding a cure or a way to stop the progression of this horrendous disease.
We keep our hopes alive that the success the researchers are having with mice will turn into prevention and cures for humans.

Through all of this, we don’t stop loving and/or needing love to be returned. I believe love stays with us until the end. Although my Mother was not able to speak, she could still express love though her eyes, or through humming or La, La, La in the most beautiful, melodic voice I’ve ever heard.

So, I start my day and end my day acknowledging how fortunate I am for the many ways I am loved and cared for.
I’m lucky to have some very special people on my Support Team and I’m thankful that I still know what it feels like to be loved.

As an Alzheimer’s Advocate, I plan on continuing my Alzheimer’s Advocacy, educating, updating and sharing my personal journey to anyone wanting or willing to listen.
I don’t want our sons and daughters, or their children, or their children to have to live with this horrific disease known as Alzheimer’s!

Until Next Time,
PEACE!!!
B