Who’d be an advocate…

“Who’d be an advocate . . . ” , beautifully written by Kate Swaffer, shows the side of having a Dementia Related Illness not many people see or understand.
Thank you Kate, for being a beacon, a truthteller, a wonderful human being!

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It seems I have written on

Dementia advocacy before

Who’d have known

It’s more pain than joy

It polarises people

Sadly makes it more ‘them and us’

People without dementia everywhere

Wanting large pieces of the proverbial pie

Using people with dementia

To take sides and support their business goals

Or their personal agendas

Being referred to as That woman…

Hurtful and deeply unkind

Talked about behind my back

Worse than yelling in my face

As one aged care executive did to me publicly

So please…

If you won’t say it to my face

Then please

Feel free to hate me

Feel free to disagree with me

But please keep your lips sealed

Stop hurting me

Which also hurts others with dementia

As today

Quite frankly

There is no doubt in my failing and fragile mind

That I have had enough instruction!

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Showing Up is Half the Battle in Dementialand

I am reblogging this story for it is very similar to what I go through on a daily basis, especially when it comes to giving my presentations.
The polished presenter you see when I give my presentations is not the same person my wife and children live with. I wish it were.

When Dementia Knocks

On an average day, a shower takes me six minutes. It takes me about six minutes to dry my hair. (It used to take about nine, but I got it cut.) I can put on make up in less than five minutes. If I have a few extra minutes, I can use them to flat iron my hair…which takes about four minutes. Why does any of this matter?

Having a rough idea of how long it takes me to get ready is important because it tells me when I need to start getting ready. If I have to leave the house at 8 am, I try to be in the shower at 7:20. If I jump in the shower at 7:30, I can make it, but I’m gonna feel rushed. If I jump in the shower at 7:40, people usually say things like, “Are you feeling okay? You don’t look like…

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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…

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My Care Partner Is My Hero

In honor of National Alzheimer’s Awareness Month, I was asked by the Alzheimer’s Association to write about my Care Partner, my Life Partner, my Wife, Shannon.
This is a tribute to her for not only caring for our family, but caring for me and all that goes with it.

I LOVE YOU Shannon, more than words could ever say.
Thank you for being YOU!

I first met my now-wife Shannon at work. I was her supervisor, and since she knew the responsibilities of the department inside and out, I leaned on her for assistance.

We started to get to know each other on a more personal level and then we started dating. She asked me out – I had no idea she liked me in that way! After dating for some time, she took me to Disney World and “proposed”; we had a beautiful wedding on the sands of Pensacola Beach by the Gulf of Mexico and rest is beautiful history.

Learning of my diagnosis sticks in my mind, but not due to feelings of sadness. I was focused on the beauty of my wife. After I asked my neurologist if I had Alzheimer’s and he said “yes,” I remember crying uncontrollably. All I could think of at that moment was what my mother was going through at the time. (Brian’s mother died of Alzheimer’s.) Shannon sensed that. She took my hand and said, “I love you and you will NOT go through this alone. I will always be right here.”


Since then, she has beautifully kept her word.brisha

Before my diagnosis, we travelled a lot; short trips, cruises, trips to New Orleans (my hometown) or Fayetteville, NC (hers) and our favorite destination, Disney World. I used to tell her: “I’m your driver, you’re my navigator and we will go wherever you want to go.” We laughed a lot.

Sadly, the travelling had to stop due to finances. When both of us were working, we could basically do whatever we wanted. That changed when I was no longer able to work. Shannon became the sole financial support. We had to downsize in order to maintain a healthy lifestyle for our college-aged daughter and our son in high school. Shannon has had to adjust to my mood swings, my confusion, my argumentative moments (wanting to do the things I used to but can no longer do, like driving) and losing part of who I used to be.

She has done it all with no complaints and with only unconditional love. She is simply amazing. I’m not sure what I did to deserve her.

Shannon’s biggest strengths are consistency and loyalty. When she makes a commitment, whether it’s professional or personal, she sticks to it – and expects everyone to do the same. These qualities have allowed her to reach a position of great responsibility as an operations manager for a realty company. Her job is hard work and requires long hours but she does it in order to provide for her family. I admire her every day for her strength as a person.

Her personality is a mystery to most but not to me. She is loving, tender, somewhat adventurous, quiet and the funniest person I have ever known. She doesn’t know she is funny, but her dry sense of humor keeps me in stitches most of the time. She talks back to the TV, she figures out who did it on the ‘Who Dunnit’ shows long before the plot is revealed and she loves the ID network. We still laugh a lot, which is wonderful.

I want to thank her and all caregivers. Caregivers – I saw how you took care of my mother, my father, my grandfather and my wife’s grandmother. It takes a certain special type of person to be able to do what you do, but you do it day in and day out. You never complain, you always wear a smile and you’re always there, taking care of your own family or of other families you treat like your own. You are unbelievably wonderful people and for those who are unable to thank you themselves, I thank you!

We can honor caregivers and care partners by giving them something they probably need or deserve – a period of time, whether it’s a few hours or a few days, to have time to relax. This could be a spa treatment, a weekend at a hotel, a manicure/pedicure. Don’t be afraid to ask a caregiver what they want so that you can give them something you know they would enjoy.

I want my care partner Shannon to know that plain and simple, she is my hero.

Shannon, I hope you never feel that the things you do go unnoticed or unappreciated. The vows we took were for better or for worse, in good and bad times, in sickness and in health. You probably never thought it would go to this extreme. Just know, if the tables were turned, I would be right where you are now. I love you unconditionally and you show me that love every day. My only hope is that you can see and feel it in return.

About the Author:  Brian LeBlanc was diagnosed with younger-onset Alzheimer’s in 2014 at age 54. Hecarries the APOE-e4 genotype, a genetic mutation which increases the risk of developing Alzheimer’s disease. His mother, father, and maternal grandfather have all died with symptoms of the disease. As a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group, Brian would like to raise awareness of the impact of younger-onset Alzheimer’s disease and be a positive example for other newly diagnosed individuals. His mantra is, “I have Alzheimer’s, but it doesn’t have me!”

Brian and Shannon live in Pensacola, FL. Together they have three children.

Just Another Reason Awareness is Still Needed

I was in a locally-owned retail store yesterday afternoon when, because I was unable to find the item I was looking for, I had to ask for help. Confused and a bit frustrated, I tried to explain to the store employee what I was looking for but the words came out stuttered and, I’m sure, unintelligible. To avoid further embarrassment, I stopped and told the very nice lady, “you’ll have to excuse me but I have Alzheimer’s and my words don’t come out right at times.” Well, she just laughed and said, “I know what you mean. I get Alzheimer’s when I drink!” and laughed a bit more.

I didn’t get mad because I’m used to reactions like that from people who don’t know about Early-Onset Alzheimer’s. Instead, I explained to her that I had Early-Onset Alzheimer’s Disease and that it affects people under the age of 65. I thought she was going to cry from embarrassment. I told it was OK and that I deal with this type of reaction every day. It gave me an excuse to Advocate. Here I was standing at the cash register with, first just her but as time went on, a group of about 5 people, talking about Alzheimer’s.

I answered questions about how I knew to get diagnosed, what type of issues I was having, what were the signs before diagnosis, etc. After about 15-20 minutes of fumbling and stuttering my way through Alzheimer’s related information, giving them the http://www.alz.org website, telling them to look up “Know the 10 Signs,” I left.

I have to say, for the next few hours, I was bothered by what happened. Not because she made a joke, but because here was yet another person who didn’t know about Early-Onset Alzheimer’s. Other diseases have no age limit. You can tell someone you have cancer and they will immediately know it’s possible. For me to tell someone I have Alzheimer’s when the majority of people think that only the elderly can have this disease, simply means that more awareness and education is needed.

Right now, you can’t watch a football game during the month of October and not see pink. I think it’s wonderful that Breast Cancer Awareness is out there and in your face. The pink ribbons and football gear works, for so many people are now very familiar with that disease. For years, Jerry Lewis used to do the Muscular Dystrophy Telethon on Labor Day, not only raising awareness, but millions and millions of dollars. Because of that, people are aware.
WHERE IS THE PURPLE???  WHERE IS THE ALZHEIMER’S AWARENESS?

The real question should be, why do other disease receive billions of dollars from the National Institute of Health when Alzheimer’s doesn’t even crack the billion dollar ceiling? Again, I hold no ill-feelings towards other diseases. If anything, being that they have now found treatments, preventions and cures, it gives me hope that one day, the same will be said of Alzheimer’s. For now, well, we keep advocating.

Does the fact that a cure/treatment/prevention isn’t even on the horizon stop me from advocating? NO!
Does it frustrate me? Yes!
But again, does it stop me? NO!

The only positive from all of this is there is a group of people (a small group) that now know about Early-Onset Alzheimer’s. If one of those people shares that information with someone who may be showing sign of Alzheimer’s and that person goes to their Doctor, well, I have done my job.

One at a time. It’s slow, but at least it’s progress.

Until next time . . . PEACE!

B
“I Have Alzheimer’s, BUT It Doesn’t Have Me!”

90 going on 3 …

90 going on 3 … what does that mean? There is a fine line for caregivers to take as their loved one’s dementia progresses.  To honor and respect the person  you want to treat them as an adult, capable of making decisions for themselves.  Reality often comes to bite you when you realize their choices […]

http://simplyhomecaregiving.com/2015/09/25/90-going-on-3/

Is the media misleading the public on Alzheimer’s?

The Memories Project

It seems to be a mixed blessing that the media is paying more attention to Alzheimer’s.

On the one hand, the spotlight on a disease that has long been kept in the shadows is welcomed. But modern journalism’s need for clicks sometimes leads to misleading headlines, which only hurts the awareness movement.

Brain

Recently, a study came out which demonstrated in a very small sample of autopsies of 8 people who had been diagnosed with the rare brain disease, Creutzfeldt-Jakob disease related to growth-hormone treatment, 6 of the 8 showed an increase in amyloid plaque that scientists believe is linked to Alzheimer’s.

It is certainly an interesting study, and the results were unexpected, but there are not any solid takeaways until larger studies can be performed. Yet, in the click-crazy world of online journalism, some outlets ran with the headline, “Is Alzheimer’s contagious?”

I’ve read accounts from those with Alzheimer’s who…

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Saved by Siri

Since I am no longer able to work, my main focus is making my family comfortable. In between scouring the Alzheimer’s sites for information to post on Twitter, Facebook and/or to update my Advocacy speech, I do laundry, I clean, I unload and reload the dishwasher, it’s what my life has come to be. For all practical purposes, I am “Mr. Mom” and I’m OK with that. It’s not what I imagined retirement to be, but there are things that happen in which we have no control. This is one of those things,

Another thing I try to do is provide evening dinner for Shannon, Asheton, and Bradley. I used to love to cook. I could throw things together and make them taste so good. As long as I didn’t make it too hot (spicy), they would eat it all and eat all the leftovers. The leftovers were the key. It’s how I gauged whether or not they liked what I made. If it stayed in the refrigerator longer than 2 days, they didn’t like it. Jambalaya

As my Alzheimer’s shows signs of progression, I find that leftovers stay in the refrigerator a bit longer than usual. Every now and then I have to throw them away. Hell, even I don’t like what I make sometimes. To play it safe, I now use online recipe’s or recipe’s from the side of the box to make sure all the ingredients are there. I still add a pinch of this or that, and make sure the meal is nutritionally balanced, but I mainly stick to what the recipe calls for.

Now, don’t worry, this is not a food blog. I am just trying to set the stage for what today’s entry is really about.

Shannon works very hard to keep all things together. When she comes home at the end of the day, she is physically and mentally exhausted. I try to make sure everything is done so she can just relax.

Every Wednesday, there’s a place near our house that runs a special on their “BANG-BANG SHRIMP,” $6 for the order along with bread and a small bed of lettuce.  Although the shrimp have a bit of a kick, Shannon loves them. Since Wednesday was the 1st, and the 1st of the month is her busiest time, I decided to surprise her with dinner.

I called ahead, ordered the shrimp and left to go on my 6 mile, 14-minute round trip to get the food.

That’s where it went all wrong.

3 miles there, 3 miles back. I felt comfortable enough to drive that route by myself. After all, I was going to do something nice for my wife. So off I went.
About 10 minutes into the drive, I realized I was nowhere near my destination. Nothing looked familiar. As Yogi Berra would say, “It was Deja Vu all over again!” 

Since I have used “My Alzheimer’s Story” so many times recently, I immediately went to the part when I got lost going to my Dr.’s office. I had this. I pulled off to the side of the road and started putting info into my phone. The only thing wrong was, I couldn’t remember the name of the place I was going, I couldn’t remember what the Google Maps app looked like, I couldn’t remember a damn thing. The only thing I could remember was, “CALL SHANNON!” “CALL SHANNON!” However, stubbornness, pride, embarrassment and the fact that she had a horrific day prevented me from calling.

So I just sat. I hope no one reading this EVER has to face the feeling of not just being lost, but not knowing how you got there or how to get back.

siriBack to me sitting in the car in a complete blank state of mind. I don’t how long I was there. I again went to my phone to try and look for the Google Maps app. I pushed the main button on the phone and I guess I held it for too long. I heard a sound and the words, “What Can I Help You With” appeared on the screen. It was my friend Siri.

Embarrassingly I started to cry, uncontrollably, you know the point in a movie where someone is stranded on a small, uninhabited island in the middle of the ocean and they see a ship headed their way to save them? THAT kind of uncontrollable crying!

Although I couldn’t remember the name of the restaurant, I could remember Bang Bang Shrimp. So I asked Siri where to find Bang-Bang Shrimp. Bonefish Grill came up with directions.

SIRI SAVED ME!!!

I went to the restaurant, got the food and drove back home, with GPS directions of course. Pulling into the driveway, I realized what should have been a 15-minute trip had turned into almost 45 minutes. Going inside and seeing what my little journey had to done to Shannon was worse than anything.

She was angry with me that I didn’t call, and rightfully so. I explained that being she had a rough day, I didn’t want to bother her. She explained that if I had called her, this could have been resolved in less time and a lot less stress. She was right of course. My good intentions had bad results.

I realized at that point that my days of driving may be nearing the end. I remember when both my parents had to give up their keys. It wasn’t pretty. My Dad, although he couldn’t remember too much, held a grudge against my oldest brother for taking his keys.  I don’t want to put Shannon in that position. She has enough to deal with, dealing with me on a daily basis with just day-to-day activities.

What I’ve learned through all of this and what I hope to remember is, having Alzheimer’s means you have to lean on others for help. I have the 3 people I love the most on which to lean . . . Shannon, Asheton, and Bradley. I have my sister and brothers and I can’t forget my furry, faithful, stuck-to-my-side companion…Dallas. I have friends and family from coast to coast and all points in between that offer their support daily. I consider myself lucky and loved and I say that with tearful pride.

Thank you Siri, and Apple. Making an app to be used as a personal assistant, in my opinion, was the best thing you’ve apple_logo_dec07
ever done. I sincerely hope people like me will use this feature instead of just asking:
What is 0 divided by 0?

Until Next Time,
Brian

“I Have Alzheimer’s . . . Alzheimer’s Doesn’t Have Me!”

Thank Goodness My Long Term Memory is Still Intact

This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.

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I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)

It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling 11219047_10205504736072068_5639772073333305210_nevents from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.

One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.

Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.

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Flash forward to the present and the “not-so-clear-memories.”  If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.

Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”

My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”

It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.

Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and 10416617_10205504735472053_8447422720410854227_nwho I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.

As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.

Until next time,

PEACE
B