The Angry Side of Alzheimer’s

The Angry Side of Alzheimer’s

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

 

 

The Disease that Keeps on Taking

This morning when I opened up Facebook, I saw I had a message from a good friend of mine. It read, “My thoughts, love, and prayers are with you today.”
I thought to myself, “How very nice of her to say this.”
Then I read it again and thought, “This is what people usually say when you’re having an operation or you’re starting a new adventure or when you lose someone.”
So, I wrote back to her saying, “Thank You, but why do you say this today?”
Then I looked at the date, January 14th, and tried to think of anything that happened on this day.
Sadness all of a sudden overtook me.

10830689_10204543352758086_1036799725875045458_oI walked over to my desk to look at my “reminder board” and at the top are 2 Prayer Cards from the funeral services of my Dad (2/8/10) and Mom (1/14/15). I knew before I looked but I had to verify, not just that today was the 1 year Anniversary of my Mom’s death, but to realize I had forgotten.
Hours later as I am writing this, tears still flow, not just because she is no longer of this earth but because of the disease I share with her, the disease that took her mind and memories, that same disease that is now taking mine . . . Alzheimer’s.

You know, it’s strange how the Alzheimer’s mind works. The memories don’t come back on their own. A bit of prompting is needed. So, as I sit here trying to remember details of that day, the one and only memory that comes to mind is of a phone call from my sister.
When I first saw her number pop up I froze. You see, my Mom had a stroke a week or so previously and she could no longer chew her food, or swallow for that matter, so a decision was made to allow her to be comfortable and pass away in peace. (This may not be exactly factual but it’s the way I remember it and that’s good enough for me.)

Anyway, my brothers, my sister, my nieces and nephews all went to say their goodbyes10931127_10204543328837488_6014411360357330344_n but my Mom, who always had a strong will, just kept hanging on, as if she was waiting for something. That is what prompted my sister to call.

You see, I live in FL, I was just diagnosed with Early-Onset Alzheimer’s about 2 1/2 months previously and I was only driving sparingly. Making a trip at that point was not possible.
Anyway, my sister called and said, “Everyone has been by to see Momma, everyone but you. I know you can’t be here physically but I think she is holding on to hear your voice. I’m going to put you on speakerphone and I want you to tell her good-bye and that it’s OK to go.”
It was the hardest, yet the most beautiful thing I have ever done.

So, I had a “one-sided” conversation with my Mom. I told her about my Alzheimer’s diagnosis and since we shared so many things in our lives (I was the youngest and a bit spoiled by my Mom and my sister) why not share Alzheimer’s as well.  I told her how well I was being taken care of by Shannon, Asheton and Bradley and how I couldn’t feel more loved.
I then told her that it was OK to go. It seems she had taken care of so many people during her lifetime that maybe she felt she still had more to do. I let her know that everyone was in a good place and that she could now go where she could finally rest. (like I said before, this may not be EXACTLY what I said, but it’s what I remember).

My sister told me that while she was listening to my voice, there was eye movement under her eyelids as if she was aware. I’m not sure if that was possible but because we know so little about Alzheimer’s, anything is possible. I don’t remember if I sang to her to her or not (we shared a love of music as well as singing) but I would like to think I did. I told her I loved her and then spoke to my sister gain.

A few hours later, I received another phone call to let me know she was gone.

As hard as I try, I don’t remember anything of the days that followed. Maybe that’s a good thing. I’m sure they were filled with sadness and I’m probably better off not remembering.

All of this makes me wonder . . . “Do people in the last stages of Alzheimer’s still hear and understand but just can’t communicate back?” I hope so. I hope I can still hear the voices of my loved ones when my time comes. I want to hear their voices and music and all the things that make me happy. I can only hope.

Next year, I don’t know know if I will forget this day again but if I do, I hope someone will remind me. For now, for today, while I still do remember, I will think fondly of the woman who . . .
– gave me life
– taught me to always open doors for people – especially ladies and the elderly
– to say yes sir and yes ma’am
– taught me to always carry a handkerchief
– shared with me her love of music and gave me my singing voice
– loved me unconditionally and with all her heart

I love you Mom and always will.
Rest in Eternal Peace. Hope Dad isn’t bothering you too much and I’ll see you soon.
At that time, we’ll find some place to sit, put on the Sound of Music soundtrack, sing and reminisce . . . clearly.

Until then, I will keep on keepin’ on, trying not to burden Shannon and the kids too much and continue doing what I do and I do it in honor of YOU!

PEACE
B

 

 

 

 

 

 

LeBlanc: Coping With Early On-Set Alzheimer’s

This is a transcript from the 3rd interview in a series I did with the University of West Florida’s Sandra Averhart of WUWF. I’m also including an audio link to the actual interview.

http://wuwf.org/post/leblanc-coping-early-set-alzheimers#stream/0

Since November of 2015, we’ve been getting to know Brian LeBlanc of Pensacola. He has been diagnosed with early on-set Alzheimer’s. Now in his mid-50’s, he has known about his condition for a little over a year now. As we continue our conversation, we focus on how the disease has impacted his daily life and how he’s dealing with it.

Brian LeBlanc of Pensacola, who’s sharing his story of life with early on-set Alzheimer’s disease.

“Being this is radio, you can’t see what I’m doing right now, but I’m holding up my cell phone,” said LeBlanc. “That’s my constant companion.”

According to LeBlanc, his phone tells him everything, even when to eat.

“Over the past year, probably, I’ve lost probably around 30 pounds. It wasn’t because I was trying. It’s because I was forgetting to eat,” he said.

It was his sister who made note of his weight loss, when she visited a few months back. LeBlanc thought to himself, “I’m just eating healthy.” That was until his wife pointed out the reality that he wasn’t remembering to sit down for a meal.

As a result, he now has reminders on his phone of when to eat, when to take medication, and when to do things such as check the mail or let the dog out.

“Um, without it, I simply would not remember, because you can’t,” LeBlanc said.

Repetition is another aid that he utilizes, noting that before our first interview at the WUWF studios, he must have looked at the email 20 times.

The email was sent to him by Dr. Rodney Guttmann, Director of the University of West Florida Center on Aging, who first proposed the idea of LeBlanc sharing his story with the WUWF audience.

Our first interview was on a Tuesday. But, when it comes to the specific days of the week, LeBlanc says he says he has no idea.

“I know numbers. I can look on a calendar and I’ll see the tenth, you know, be here,” said LeBlanc. “But I don’t know the days of the week anymore.”

LeBlanc can identify weekends, he says, because his family members are home for two days in a row. But, confusion sets in if you throw in a weekday holiday or a three-day weekend.

“That messes me up, really bad,” said LeBlanc.

As a result, his daughter, who’s in college, will write her schedule on a board indicating when she’ll be away and when she comes home.

LeBlanc says access to such information is helpful because he’s found that he doesn’t do well with surprises.

He and his family members also have noted more frequent mood changes.

A friend of his talked about a feeling in the front part of his head that he couldn’t explain. LeBlanc referred to it as being his ‘fog.’

“As hard as you try to see something you just can’t,” LeBlanc said. “Sometimes, it’s completely shrouded. Sometimes it’s in the middle; it depends. But, you can’t see, and it comes and goes. It’ll come in, roll in, roll out.”

It’s on those ‘foggy’ days when LeBlanc can’t get behind the wheel of a car.

Right now, he’s functional and GPS is his best friend. But, he fears getting lost, which triggered his diagnosis, and he has no comfort that he’ll arrive at his intended destination.

“I’m extremely nervous about driving,” said LeBlanc. “That’s why I’ll only go places that I sort of know.”

LeBlanc says he prefers simple routes, without too many turns, adding that under no circumstances can he drive at night.

“That’s completely out of the question, because, I look for landmarks or street signs. At night I can’t see them and it’s not good.”

At night or when he’s in a fog, LeBlanc’s wife and daughter drive him around. Again, LeBlanc is still capable now under certain circumstances, but he knows it won’t be long before he’ll have to give us driving altogether.

“I’m worried that not only will I harm myself,” LeBlanc said. “But, if I harm someone because I was confused, I would never ever be able to live with myself with that.”

In particular, LeBlanc does not want to have to experience what his father went through when LeBlanc’s oldest brother took his keys away from him.

“My father, he forgot a lot of things, but he never forgot that.”

And, as we wrapped up our first extensive conversation, LeBlanc was feeling pretty good about the fact that he made it through the interview without notes. His public speaking on behalf of the Alzheimer’s Association has helped.

He’s part of Alzheimer’s support groups and serves on the executive committee of the Florida/Alabama Panhandle Alzheimer’s Association.  Also, LeBlanc is chronicling his experiences in a blog, Alzheimer’s: The Journey…my Alzheimer’s Life.

In general, though, he says speaking isn’t nearly as easy as it used to be.

“People used to tell me I could talk to a tree and have a conversation,” said LeBlanc. “But, now I have to choose my words, thinking before they come out of my mouth to make sure that they sound okay.”

They do sound okay, and in 2016, we hope to hear more from Brian LeBlanc, talking about the changes in his life due to early on-set Alzheimer’s and how he’s coping.

New Year’s Un-Resolutions

This is Ann Napoletan’s latest blog. Instead of trying to reinvent the wheel, I figured I would re-post her very well-written, well thought out blog entry. Thank you Ann!

The Long and Winding Road...

2016New Year’s resolutions are overrated. More often than not, they set us up to fail. I think a better alternative is to focus on smaller actions and thought patterns that can incrementally change the way you view life, yourself, and the world around you.

Here are some ideas. Most cost nothing and don’t even take a lot of time, but they have the power to vastly improve your outlook. Many of these are on my list for 2016. Will you join me?


Be kind, always.

Spend time on your passion; if you don’t know what it is, work on finding it.

Tell the important people in your life how much you love them.

Take more walks.

Spend time with friends; reconnect with someone you haven’t seen in a long time.

Worry less.

Believe in yourself and your worth.

Embrace creative pursuits.

Assume innocence in others.

Ditch guilt.

Work hard.

Take…

View original post 85 more words