When you hear someone talking about the future and the plans they are making as to where they will be living, who will be taking care of them,
and how they will be taken care of, do you think to yourself, “I won’t need care. I’m in great physical shape, I am of sound mind, my spouse/partner and I have a great relationship so they will be able to take care of me if something goes wrong.

Scenario #1 . . . 25 years later. You Spouse/Partner is no longer with you. You have developed a Dementia-Related Illness and the time has come that you
are no longer able to live and care for yourself. You enter into a Care Community where no one knows you, no one knows about you and you are unable to tell them anything about your past. They have to figure things out the best they can as to how you would want them to care for you.

Scenario #2 . . . 25 years later, you develop a Dementia-Related Illness. Your Spouse/Partner finds it difficult to care for you at home. The 2 of you had already made plans as to where either of you would go in case the other spouse was not able to properly care for the other. The two of you also made videos years before . . .

One video was made for your future CarePartners as to what your wants, needs and wishes are, and the other video was made to your Spouse / Partner as to what your wishes are from them.

I have to say, the couple that made the videos were much more prepared than the couple that did not.

The reason I am writing this is because, at almost 60 years old and Living with Alzheimer’s Disease, Vascular Dementia, Type 2 Diabetes and underwent a Triple Bypass last year, I know that my time on this earth is precious and I want things to be in order when my time comes to move into a Care Community.

Just last week, I made 2 videos . . .
One to my future Care Partners and one to Maureen, my Care / Life Partner.
The one to Maureen was extremely hard and emotional but necessary. You see, sooner or later I will not be able to tell her how much I love her, I won’t be able to tell her Thank You for all she has done, and continues to do, for me. I want her to continue hearing my voice, telling her what it means to have her in my life. The other reason is she asked me to record my voice telling her that I lover her. You see, we both will reap joy from these little messages.

I’ve also asked her to sneak in some Peanut Butter, Ice Cream, Chocolate Covered Almonds, Starbucks Coffee (Venti, Pike Place, 3 Splenda, and half n half . . . just in case you want to come visit me when/if Maureen can’t make it.)

I know you have heard the phrase, “it’s the little things that make the biggest difference” but they really do. Being prepared with a plan for the
unforeseen future, being prepared with a Life Care Plan which includes Advance Directives is, what I would define as, mandatory.

The second video I made was to my future Care Partners. I told them of my love for music and how it lessens my times of anxiousness. I included some particular songs from my favorite artists and my favorite genres.

There’s nothing like listening to New Orleans Jazz Greats Al Hirt and Pete Fountain, the heavenly voice of Aaron Neville and the funky sounds of the Neville Brothers and the Meters. I had to include my country fav’s Tim McGraw, Kenny Rogers, Tracy Byrd, Dolly, Reba and Faith, just to name a very few.

I told them of my favorite foods . . . Peanut Butter, Cheerios, Coffee (duh!) Yes, I can (and have) survived on those foods and yes, I know I am
Type 2 Diabetic but you know, considering all else I will be going through, I don’t think a little peanut better and Cheerios will matter.

I also asked them to take me outside so I can feel the sun on my face and so I can take photos. I take a lot of photos for they help me remember
where I have been. I also know that when I look at photos, I may not remember where I have been but, as Maureen once told me, I can experience the warm feelings I had when I took the picture.
By the time I enter a Care Community I plan on having albums and albums of photos that will bring many, many fond memories and beautiful feelings.

Finally, I made one final request and I have included this is my video to Maureen. On my last day upon this earth, I have requested to have Maureen by my side.. Before she kisses my good-bye, I would like for her to put a little bit of Peanut Butter on her lips. Hopefully that will bring a smile to both of us.

You may notice that I tend to sprinkle my blogs, stories, conversations and other posts with humor. It’s not that I am making a joke about the things I write, it’s that I have found that a little bit of humor eases the seriousness of things. I have asked my future Care Partners to joke with me, share jokes with me and don’t be so serious all the time. In my humble opinion, laughter is a necessity of life and it also can ease the tension to make things a bit more bearable.

It’s also why I have decided to be cremated instead of having people standing in line to look at a version of who I once was. I don’t want my “Celebration of Life” to be a sad, solemn occasion. I want music to be played, I want food and alcohol, (and Starbucks Coffee) I want my guests to have 1 final celebration with me before my ashes are placed in a planter and I become part of a beautiful tree.

I hope you can take what you have read here and incorporate some or all the things I mentioned into your future Care Plan. These are mere suggestions for you to use or not. Either way, please make a plan for your future and make sure it is YOUR plan. No matter how many friends or family members you have, YOU are the one that knows YOU the best. If you wait for too many tomorrows to come around, well, let’s just say, don’t wait until it’s too late!

Until Next Time,
PEACE (and Starbucks)
Brian
#planforthefuture #dontwaituntilitstoolate #knowme #teamworkmakesthedreamwork

From the moment I was diagnosed with Alzheimer’s Disease, I was stigmatized. You’ve probably read about the number of ways I was stigmatized, but the one that stung the worst was when a close family member told my sister they thought I was faking my disease to get attention. Yes it stung, but after being diagnosed 4 times by 4 different Neurologists, I didn’t worry about it anymore. It still stings a little bit but that’s ok, they don’t speak to me anymore.

Yes I’ve progressed a bit but not to the point where I need 24/7 assistance. In my mind, I’m a long way from that. I owe it to keeping busy, using Music Therapy as a mood Stabilizer and living an active lifestyle with Maureen. We also spend our time traveling around the country and beyond Spreading Dementia / Alzheimer’s Awareness from the perspective of the Care Partner and Person Living with Dementia.

You see, we’re not homebodies. We like to go places. If you follow us on Social Media you’ll see where we’ve been in such a very short time. We travel quite quite a bit for leisure and for speaking engagements. wherever we go, I take photos, not just to take them but for memories. I know I’m going to get to the point where my memories will start to fade, both from age and Alzheimer’s so I am preparing for that. I am going through my photos and placing them in albums. I may not be able to remember (without assistance) where the photo was taken but, as Maureen always, “you may not remember being there but you will remember the feeling it gave you.” That part has already started so I’m glad I started creating my albums.

I also mentioned how music stabilizes me. Pardon me if you’ve heard me say this before or read it before but music is AWESOME. Use this for an example … think of a song you used to know very well, maybe something from your early teens or prior. If you think about it, you may not be able to recall the words but the melody may come to you in bits and pieces. Now, go to iTunes or Google Prime Music and put the name of the artist (if you remember) or a part of the title or whatever you can remember. Once you find it and listen to it, let me know how it made you feel. Furthermore, let me know how much of the lyrics you remember. I have downloaded songs from the 60’s and 70’s and amazingly, I remember 85% to 90% of the lyrics. Thank goodness for my long-term memory bank. The joy that comes flowing through your mind is euphoric. Even if you don’t have a Dementia-Related Illness, try this. I think you’ll be glad you did.

The thing is this … those of us who I know who are Living with a Dementia-Related Illness are doing pretty well. Yes, we’ve all slipped a bit, we’re not as sharp as we once were but we manage. Our Care Partners help fill in the blanks but they also are there for the frustration, the melt downs, the anger. For us, we may forget those incidents by the next day … they don’t and that is difficult to manage. I don’t know one person who, is reminded of what happened or remembered on their own, doesn’t feel like crap. Trust me, we all wish it was always a bed of roses but when those thorns come out, it really has a huge affect.

Then there are the Hallucinations . Trust me, they are NOT fun. I can’t speak for everyone else but for me they are menacing. Maureen assists me in getting rid of them (we yell / curse at them until they disappear.) Hey whatever works.

So, as I may have said before, “Living with Alzheimer’s” is no picnic and it affects people in different ways. We all have to fight it in whatever way works best for us. When it’s not hitting us over the head, WE LIVE!!! WE LAUGH!!! WE DISCOVER NEW TALENTS and HOBBIES!!! As long as we remain “DEMENTIA STRONG” and not allow our disease to define us, we’re going to be OK for a little longer!

Until Next Time
Peace,
B

#DementiaStrong #AlzheimersDisease #DementiaRelatedIllnesses #AlzheimersAwareness #ThePowerofMusic

(I know I posted this Blog Post several months ago but I wanted to post it again for it still struck a nerve with me. I also needed to correct some grammatical errors. 😎
There are some unbelievable, super-intelligent and Person-Centered Focused Neurologists and other Medical Professionals who I have had the pleasure to meet and learn from. I am a much more educated person because of them.) 

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.

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 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 was then 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 be frustrated, even normal-brained people can’t 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, 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 robbed me from working, took away the ability to provide for my family, 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. (out of respect, I have not and will not reveal his name.)
Lastly, TODAY, if it hasn’t happened before, you will see THIS person, who you stigmatized, walk out of this office and NEVER 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 directions 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. If we don’t, they will continue STIGMATIZING other individuals just because they don’t fit the mold.

Until Next Time,
PEACE

B

 

Thanks to WebMD for producing this documentary about Brain Fog.
I hope you come away with a better understanding of what those of us with Alzheimer’s Disease go through on a daily basis, sometimes several times a day.

https://www.webmd.com/alzheimers/video/into-the-fog