Alzheimer’s . . . from the Daughter / Dad Perspective

In honor of World Alzheimer’s Month, my daughter and I were asked to write a few words as to what it’s like to be a Dad with Alzheimer’s and a Daughter of a Dad with Alzheimer’s. Being today is World Alzheimer’s Day, here are our words, our perspectives, our truths.
My hope is that this brings an awareness, some clarity and raw honesty of how Alzheimer’s not only affects the individual with the disease but the family as a whole.  I also hope this shows that Living with Alzheimer’s is still “LIVING”, still “FEELING LOVE”, still being “ALIVE INSIDE!”
B

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Daughter of Dad with Alzheimer’s, from HER Perspective

Being the daughter of a parent living with Alzheimer’s is challenging, unpredictable, and the best way to learn patience. There comes a point where you find yourself, a child, not only wanting to help your parent with the disease, but also being left with no other option but to help. Luckily it doesn’t happen all at once.

It starts with helping them retrace their steps to finding their keys that they put in the fridge, to watching them struggle for a few minutes to find their car in the parking lot, to wondering if they know where a store is five minutes away from home, and then ultimately them not being able to drive anymore at all and having their license taken away. It’s a slow and steady progression, but it still hurts me all the same.

Being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind. Nothing prepares you for that, and when the time comes you have to just accept it and take it with a grain of salt. Conversations are a little harder to have, dinners aren’t as cheerful as they once were and outings have become progressively more stressful. But at the end of the day despite all the challenges, the unpredictable circumstances, and my patience running a little too thin…I still love my step dad, and I know he still loves me. 

Dad, with Alzheimer’s, of Daughter from HIS perspective

Being a Dad to a daughter is special, like a gift. Throw in Alzheimer’s and it complicates the entire situation. Her helping to care for me while I live with Alzheimer’s was nowhere on my radar, but she just jumped in and never looked back.

At 22 years old, she has her own life and will not be here forever. My questions are, will I be around or aware to see her married, become a mother, to hold my first Grandchild? Will I be there to celebrate those moments with her?

I know she tires of me asking questions she has answered before but she doesn’t bat an eye. She just answers. When she comes home at the end of her work day/night, she sits with me for a few moments, asking me questions about my day that most of the time I can’t answer but somehow, she already knows the answers and helps me fill in the blanks. Funny thing is, I don’t always recognize when she does this . . . but she knows, and it breaks my heart.

I realize I must sound the same as my Mother did (she also had Alzheimer’s) when I asked her questions. I’m sure, as confused as I sound, she still treats me with the same love and kindness as I treated my Mother. I couldn’t ask for anything more loving than that.

She states, “being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind.” I don’t know anyone who would want that for any of their children. I know I didn’t and I also know my daughter doesn’t have to do what she does, day in and day out, but she does it.

My one hope is that she is far, far away when I am in need of the type of care I’ll need in the end. Until then, I try to cherish each kiss on the cheek, each moment, no matter how big, small or insignificant we share.​

#WAM2017  #WorldAlzheimersDay2017

Until next time . . .
PEACE!

B

 

I Miss Reading . . . and A LOT of other things!

A friend of mine recently asked me if I had ever read the book, “tuesdays with Morrie” by Mitch Albom. She said, “he allows himself 10 minutes a day to mourn the passing of the old him.  After that, he lives in the moment for the day.”

I thought about this and although I do “live in the moment”, I don’t take the 10 minutes a day to mourn the passing of the old me. To be honest, I probably take a little too much time to mourn. 

“Don’t cling to things because everything is impermanent.” 
 Mitch Albom, Tuesdays with Morrie

51AhqmiD-oL._SX344_BO1,204,203,200_For instance, I thought to myself, “I would love to read this book, but I wouldn’t be able to remember what I’ve read.” Don’t get me wrong, I “CAN” still read, I just don’t retain anything I have read. Then I started thinking of all the books I’ve read over the years and how much I enjoyed reading. Then I got sad. Instead of taking 10 minutes to mourn, I took a little more . . . OK, A LOT MORE!!!
I not only mourned not being able to retain what I’ve read, I mourned not being able to work anymore. Working not only gave me a purpose but it also provided me with an income, an income that helped me provide for my family. Now, through Social Security Disability Insurance, I receive approximately 3% of the salary I used to receive. I’m thankful for receiving that but sometimes, I only look at the glass half-full.

“I give myself a good cry if I need it, but then I concentrate on all good things still in my life.” 
 Mitch Albom, Tuesdays with Morrie

I also mourn the loss of my driving privileges. Due to my brain hemorrhage that was discovered back in February of this year, as well as the temporary loss of my ability to speak, my Doctor strongly urged that I discontinue driving. I knew what “strongly urged” meant and I knew that would be the last day I would ever drive. I mourned a lot over that . . . and still do, however, it wouldn’t compare to the amount of time I would mourn if I hurt someone in my vehicle or in another vehicle.

“This is part of what a family is about, not just love. It’s knowing that your family will be there watching out for you. Nothing else will give you that. Not money. Not fame. Not work.” 
 Mitch Albom, Tuesdays with Morrie

I mourn the loss of friends. When I told Shannon that I wanted to “talk about my Alzheimer’s” she turned to me and said, “just remember, once you put it out there, you can’t take it back.” She was right!
My thought was, talking is my strong suit. By talking about it, it would hopefully help others have a better understanding of Alzheimer’s Disease and how individuals like me can still live a pretty good life. Also, by talking about it would keep me engaged, keep my brain working.
What I didn’t know was how many people would stop speaking to/with me because they didn’t think I would be able to carry on a conversation with them. Also, as I wrote about in a previous blog post, there are those who feel I’ve been faking this whole thing.
I wish I didn’t mourn that as much as I do.
However, looking now at the glass half-full, I have met some pretty phenomenal people in the Dementia World. These individuals are some of the bravest, funniest, most intelligent people I have come to know.
I have also discovered my true mission in life and that is being an International Dementia Advocate. It gives me purpose, drive and passion to a level I have never experienced. 

“Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” 
 Mitch Albom, Tuesdays with Morrie

I mourn a lot of other things, too many to go into here, however, I’ve realized by writing this blog post, and although I didn’t read “tuesdays with Morrie” I read some of the quotes from the book (some of which I’ve listed here) and I made myself a note and stuck it on my desk so I will see it every day. I may have to put one on the bathroom mirror, one by my recliner, make it my opening screen on my phone . . . 

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Whatever it takes to remind me to keep the mourning at a minimum.

“Life is a series of pulls back and forth. You want to do one thing, but you are bound to do something else. Something hurts you, yet you know it shouldn’t. You take certain things for granted, even when you know you should never take anything for granted.” 
―  Mitch Albom, Tuesdays with Morrie

I’ve never tried to paint a rosy picture of what it’s like to live with Alzheimer’s. I wouldn’t be honest with myself or with you if I did that. Just know, I don’t do it for sympathy. I don’t want nor need anyone’s sympathy. All I want to do is to live the best life I can possibly live in the remaining years that I have, which I hope will be many.
Until then, I’m going to continue my Advocacy Journey, doing the best I can to share awareness and education as it relates to everything Alzheimer’s and other Dementia-Related Illnesses.

Oh yeah, and remember to mourn no more than 10 minutes a day!

Until next time . . .
PEACE

B

Still Riding that High

Still Riding that High

Have you ever gone somewhere or had an experience that stuck with you for days, weeks or months after? I describe that type of feeling as a high (not drug induced) or a euphoric feeling, like catching the perfect wave and you ride it all the way to the shore. THAT kind of feeling.

Well, I’ve been in my “euphoric state of mind” for the past week and it was all due to a conference I attended in Atlanta, GA. The “Dementia Conference and Technology Showcase” was put on by Dementia Action Alliance of which I am a member of the Advisory Board. (being I’m a member of the Board has nothing to do with the way I’m feeling) The conference theme was Re-Imagine Life with Dementia . . . Engage – Empower – Enable. To you, they may be just words but to me, they were so much more.

I’ve been to Dementia conferences in the past and they have been great, informative and educational, but the one ingredient that was missing was inclusion. For those of us Living with Dementia, we are often spoken to or spoken about, but not heard from. Other times, we are there for other people to say, “Oh look, there are the people with Dementia! It’s so nice to see them out and about!”  Kind of makes us feel like a side show at the circus. 

This conference was all about us. Hearing from US! Listening to US! Learning from US!

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We were not only included from the very opening of the conference, we were a big part of what the conference was all about, and then we closed out the conference. 

 

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We were on panels, we were part of break-out sessions. 
We were even part of an Improv event at the Buckhead Theatre with “30 Rock’s and voice-over actor ‘Jack McBrayer’.”

And the individuals we worked with, the Dementia Action Alliance and ALL the wonderful sponsors of the event . . . THEY GOT US! They Got “IT”!

I’ve given my “Alzheimer’s: Up Close and Personal” presentation to an audience in Washington, DC at the National Academy of Sciences. I’ve spoken at a conference, In Chicago, IL for a national Insurance company about what type of decisions to be made before the end of life. I’m honored to teach“Crisis Intervention Team Training” to Law Enforcement  Officers and First Responders. These types of instances are what I hold near and dear to my heart. 

Not to downplay anything I’ve done in the past, however, to not only attend but be a part of this conference was life changing. It wasn’t the participation as much as it was meeting others like me, others who I’ve been speaking to for years either through teleconferencing or video conferencing but have never met in person, people I have come to know and love, people who I call friends. THAT was the highlight.) 

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We weren’t gawked at or talked about. We were celebrated. We were spoken with. We were asked questions. We were INCLUDED in the conversation. WE MATTERED! Our Dementia-Related Illnesses were still there, but they were not what was seen.

WE WERE SEEN!   WE WERE HEARD!   WE WERE UNDERSTOOD!

I guess the best way to sum it up was something I tweeted a day after the conference ended. It simply stated:
“You know why #DAAcon17 was such a success? THEY GET IT!”
#dementiaawareness #dementia #livingwellwithdementia #dementialife 

THEY GOT IT! There was no other way to state it other than that. 

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And . . . somewhere along the way, we had some fun, just being ourselves, so much that a comment was made, “I’m having so much fun ‘I FORGOT I HAVE ALZHEIMER’S’!”
I may or may not have been the one to say that, but I forgot! 

Until next time . . .
PEACE!
B

 

Taking Care of Our Own

This post is a bit different from what I normally post. I don’t mean to offend anyone, I’m just passionate about what’s going in our Nation. 

For all the folks that want to open our borders to immigrants from other countries, immigrants who will be supported by us, I have a solution.
Open YOUR home to support these individuals as well as their families, and be responsible for all of their actions. Feed them, clothe them and take of their medical needs. That is what you want for them, right? 
Giving them an opportunity, right? Well, now you can. No, I’m not being negative or prejudice. I’m being real.

With that said . . .

Why not take care of our Veterans who need our care? You remember our Veterans? The ones who fought for our rights and freedoms? Our Veterans who, because of their service to our country make it possible for you to stomp on and burn our Nation’s flag? Our Veterans who have to wait because a non-US citizen “needs” medical treatment because they matter more?

Why not take care of our aging population, the ones who gave us life, the ones that took care of us first?

Why not take care of those of us who have a fatal disease and put those dollars into research, respite care and hospice care?

We need to take care of our own, before we begin to take care of others.

I’m sure you take care of your families first, making sure they have all their needs met. Why can’t we, as a nation, take care of each other first and then, and only then, look to taking care of others?

If you still insist on taking care of others first, let me know. I will gladly take donations to help fight Alzheimer’s Disease, the disease that assisted in taking the lives of many of my loved ones and will ultimately assist in taking my life. There are also other organizations that could also desperately use your help.

If you still insist on taking care of others, open your home to a Veteran, a member of the homeless population, or any other US Citizen that could use some help.

See what needs you can assist with in your own community. There are so many individuals right here in my community that are doing wonderful things for the betterment of the people that live here. They are awesome individuals who do these things, not to call attention to themselves, but because they are fulfilling a need for the individuals that live here.

Now, if you are STILL not satisfied, I’m sure there are many Middle Eastern Countries that will welcome you, as well as your support, with open arms and will even provide you with free housing. It may be cramped, dirty, hot and uncomfortable, but don’t worry, your visit will not last very long.

That is what you want, RIGHT?

Have a Great Day!

If You Can Reach At Least One . . .

Since becoming an Alzheimer’s Advocate, I have spoken to groups numbering 1 to 1,000. The locations have been auditoriums, small halls, retail stores, bars, and churches. Neither the number of people nor the location ever affects the way I share my Alzheimer’s story. I speak with the same passion, I speak from the heart, I speak from real life experience.

Shortly after my diagnosis in October 2014, I knew what I had to do. It was something I had been doing all my life . . . something I had done in my professional life. Since I no longer had a professional life, I knew sitting around watching TV all day was not going to do me any good.  I had to talk about it.

Alzheimer’s is a funny (not a ha-ha funny) disease, in that you never know what memories you will keep or forget.
One memory I have kept is of a wonderful Manager I had years ago. He was a retired Navy guy. I’ll call him, “Mike”. “Mike” was the BEST Manager I ever had for he pushed me. When he felt I wasn’t pushing myself hard enough, he called me a “Rack Lizard.” If I remember correctly, (and no, I’m not joking) a Rack Lizard was a Navy or military term used for someone who was a bit lazy, “laying around
 in their rack (bed) all day.) He used it not as an insult or not because I was lazy, but as a tool to push me to be better. 

It was in the early 2000’s, a very busy time in the Communications business for we were launching Digital Cable and High-Speed Internet.  We were knee deep in customer calls wanting information and technical support so we had to hire a large number of temporary employees to help with the overflow. I was the Technical Support Supervisor and I felt I was not giving my regular team members the proper attention. So I went to see “Mike”.

I told him I felt like I was not reaching all my employees and I didn’t want them feeling ignored or unappreciated. What he told me as a response to my concern was something that has lived with me to this day.
He said, “As much as you would like, you are not going to reach every single person. However, if you can reach at least 1 person and that 1 person succeeds because of your interaction, then you have done your job.”

It was awesome advice. From that point forward, I remembered what “Mike” said and it got me through some frustrating times. Although it was excellent advice, the flip side was you never really knew whose life you may have touched, who that 1 person is.
Well, I got see to see that 1 person.

I recently co-moderated a couple of focus groups. We spoke to 2 different groups and they were individuals with Dementia-Related Diseases as well as their Caregivers. The discussions ranged from how they (the person with the Disease as well as their Caregiver) are managing their lives to what they learned from their Physician when they were first diagnosed. 

The discussions were very interesting for I could relate to almost every person in the group. We may have had a different Dementia-Related Disease, but some of the symptoms are the same. The first group was a bit reserved at first but after they warmed up to us, they opened up. We felt it was a great success.

The second group was fewer in number but they opened up immediately. One particular person, I’ll call her “Sally”, was very anxious. She was there with her sister.“Sally” had not yet been diagnosed but was showing signs of someone with Early-Onset Alzheimer’s. (I am not a Doctor and my opinions are my own.) Her sister said she had become extremely forgetful and was getting wore.

From what her sister shared with us, “Sally” was consistently worrying about things she forgot about the day before. She was forgetting about the present day and was not remembering what was going going to happen tomorrow. Basically, she was worrying 24/7 and not really focusing on the here and now.

As I said previously, “Mike’s” advice had a huge impact on me, so much that I use it when I give my “Alzheimer’s: Up Close and Personal” presentation.
It comes in the latter part of the presentation . . . “As much as I would like to reach every single person in the world, I know that is not possible. However, if I can affect at least one person in a positive way, I am doing my job.”

I gave “Sally” some of my own advice that worked for me. I told her (and reminded her sister to help her remember) to let go of the things she forgot about the day before and not worry about tomorrow. The only thing she could do was to live in the here and now . . . LIVE IN THE MOMENT! She began to repeat the phrase over and over as if she was trying to burn it into her brain. Surprisingly, it calmed her, not completely but she was a lot better than what she was. Her sister told me she would help her to remember.

 Now, when I talk to folks, I don’t usually see them again, unless I go back to that same group. Being I was out-of-town, I knew I would probably never see these folks again. I would have to hope that my words helped them in some way . . . not everyone, but just one. 

The next day, I was going back to my hotel and I was hungry. I figured I would stop off at Publix and get both lunch and dinner so I could just eat in my room. I was at the deli counter when I heard someone saying, “excuse me sir . . . excuse me sir.” I turned and it was “Sally’s” sister. She said, “It IS you!” then proceeded to give me a great big hug.

She said, since they left the focus group, “Sally” was changed. She was a bit more relaxed and would say every now and then, “I’m going to live in the moment.” She thanked me for making a difference in “Sally’s” life by listening to her and giving her advice that truly made a difference and had a positive impact. I immediately thought of “Mike” and how finally, after all these years, I experienced “THE ONE!”

We spoke for a few more minutes and I left to go find my dinner. I admit, I was a bit teary-eyed after experiencing something I thought I would never experience. But my joyful moment was interrupted by another voice . I heard, “Mr. Brian . . . Mr. Brian, is that you?” Lo and behold, it was “Sally”. She was waiting for a prescription. She ran up to me and gave me a great big hug, saying, “Thank You, Thank You, Thank You! You changed my life!!!”

I may have, but I don’t remember ever hearing those words before. I just let her hug me and I hugged her back. She told me she had been “Living in the Moment” since the day before and she didn’t even worry about things she forgot. She said she slept the whole night through for the first time since she could remember. She couldn’t thank me enough and she would never forget me and would pray for me and my family as I lived with my Alzheimer’s.

What a WOW moment!!! It was an incredible feeling but also very humbling. Once I got back to  the car, tears flowed. I have given that advice to probably thousands of people and not once has it come back like this. It was a life-changing moment. Now that I have it in print, I will be less likely to forget this experience but if I do, I’ll remember when I re-read this.

I owe a debt of gratitude to “Mike” for sharing his knowledge, his experience and his words of wisdom with me, oh those many years ago.  “Mike” your words have served me well, sir and in case you haven’t experienced “the one”, well he’s writing this blog post!

Now, about that Rack Lizard term . . . .  🙂

PEACE,
B