Dying with Dignity

I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

Several months ago, I made a video to my future Care Partners. In case you didn’t see it, here is a a link to the video. https://bit.ly/30fWF5O

In the video, I talk to my Future Care Partners, telling them my likes and my dislikes so that when I am struggling with my Dementia, Anxiety and anything else that may make me a little difficult to deal with, they will know what to do.

Realizing that planning how you will pass from this earth is not exactly a fun discussion to have. We also realize that death can come along at any time, so it’s always important to have a plan. Don’t you want to be assured that that when your time comes, you will leave this earth in a manner in which you choose? I know I do,

With that said, Maureen and I have had many conversations about this topic because we both want to make sure that whoever goes first, the other one will know their wishes. We are going to write these wishes in our Journals, making changes and additions as we go along. It’s important to both of us that we give each other what the other wants.

One of the things we agreed on from the get-go is that we want to be cremated. We figured, why would we want to rent space in the ground when we could have our ashes planted in the ground and become a beautiful tree. That is such a beautiful thought that, when in full bloom, people could come sit under our branches and enjoy the shade we could be provide them. To us, that is such a beautiful way to spend eternity.

This blog post is not completely about dying, but more about our dignity. Simply said, I don’t want to spend the last days of my life being kept alive by a machine just to prolong the inevitable. I have work to do, meaning, I am donating my body to science.
– I want them to study my brain to see if something they find could be used to help further understand this most misunderstood disease.
– I want them use my organs to keep someone else alive.
– I want them to use anything they can to benefit others.

I can’t think of a better way to help others, rather than just put me in a hole in the ground.

In preparing for this post, I did l do some research. One of the things I looked at were websites with the title of Death with Dignity. This was not what I was looking for but a lot of folks, now today more than ever, are choosing.
Right from the start it states, “You’re joining a growing movement that works to ensure terminally ill Americans have the freedom to choose from a full range of end-of-life options, including how they die. Seventy percent of Americans support the end-of-life option allowing qualified terminally-ill people to end their lives through physician-prescribed medications. That’s right: seven in ten Americans want this option. https://www.deathwithdignity.org/learn/advocates/

Like I stated above, this is not for me but I respect those who choose this alternative.

So, what do I want to happen during the dying process?

  • First of all, I want Music. I want the room to be filled with my favorite music (I am currently working on my playlist) so that when I pass, I will be relaxed and non-stressed. That’s important to me.
  • One thing I DON’T WANT is people staring at me during my last moments. I know it will be sad, however, living with Alzheimer’s, Vascular Dementia, Type 2 Diabetes and no telling what awaits me in my later years, I want to be in my own bed, with nice sheets and soft pillows, have Hospice involved, laughter, (I don’t want it to be solemn for that is not who I am) and I have discussed all of this with Maureen.
  • I DON’T want to be left alone, (unless Maureen leaves to get a Diet Dr. Pepper from Chik Fil-A)

    This will all be put in writing so in case Maureen is not around, it will still be able to be carried out. Why is this so important to have this written?
  • I may not be verbal at that time. (Maureen says she couldn’t be so lucky to have me non-verbal.)
    I feel people should talk about their fears, no matter how serious, funny or anything in between because we don’t want to be trapped with those fears inside.

Before Maureen, I had no idea how I was going to spend my final days and moments nor did I have anything in writing. The only thing I knew for sure is that I wanted to be cremated and have my body given to science. I was living by myself and I had a fear of something happening to me and no one finding me for days. I had a fear of dying alone.

Now, with Maureen ever present in my life, I no longer have that fear for we now have a plan in place. And even if Maureen is not there, there will still be people by my side and I won’t be alone.

With that said, I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

You see, in Muareen’s line of work, at times she was the only one standing by the bedside of one of her clients, holding their hand as they passed away. She offered comfort but had no idea what their wishes were. She promised me that would never happen with me.

Some things I forgot to mention was, I want to have a Celebration of Life.

I want music to be played and at one point, I want the song, “Feeling Good” by Michael Bublé to be played. I want food and yes, alcohol. I don’t want anyone to wear black. Instead, I would love it if everyone would wear brightly colored clothes. If you have a Tropical Shirt, that would be even better. (I may add more to this as I think about something new. It’s kind of like me … a work in progress. You never know what you’re gonna get!)

The reason why I mention all this is because, if you don’t already have a plan or haven’t had conversations with your family as to how you want to spend your final days and moments, plan now, so that when that time comes, you will pass away in peace and your loved ones will also know they gave you exactly what you asked for.

Doing this is one of the greatest gifs YOU can give to your Loved Ones.
DON’T WAIT UNTIL IT’S TOO LATE!!!

Until Next Time . . .
PEACE!!!

B

Are There Do’s and Don’ts When it Comes to Dementia?

Shortly after I was diagnosed with Alzheimer’s Disease in 2014, I came up with my tag line, “I Have Alzheimer’s BUT . . . It DOESN’T Have ME!!!”

What that meant to me was I didn’t want to be identified by my Alzheimer’s, rather, I still wanted to be identified as Brian. Well, things didn’t quite work out that way. Instead of continuing to identify me as Brian, it felt like more and more people started saying their good-bye’s. Phone calls, text messages, e-mails just went unanswered. It was a very lonely time and some days, it still is.

I use Social Media as a way to keep up with the latest trends, news, discoveries and anything positive I can find regarding Dementia-Related Illnesses. I also use Social Media to remain . . . SOCIAL. Most days I receive the “Memories” post that reminds me of past postings, photos and, of course, memories. While I enjoy looking at some of the photos, there are other photos that make me sad. These are usually photos of people I thought would be my friends forever but have now disappeared.

Don’t get me wrong, I am not complaining, whining, or looking for sympathy. I am simply trying to figure out why some of these folks just don’t engage with me anymore. These aren’t people who were just acquaintances, these were people I thought were my true friends and still would be throughout the rest of my life. This has proved not to be.

I am very thankful for those folks who still stay in touch with me. It brings me joy, smiles, warmth and all sorts of “feel good” feelings. I am so very thankful these folks have kept me as their friend and not toss me away like an old, used up newspaper.

This brings me to the title of this Blog Post, “Are There Do’s and Don’ts When it Comes to Dementia?” I know there aren’t really any rules but when I did some research, I came a cross the information below which is the closest thing I have found regarding the Do’s and Don’ts of Dementia

16 THINGS I WOULD WANT, IF I GOT DEMENTIA
by Rachel Wonderlin

  1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
  2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
  3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
  4. If I get dementia, ask me to tell you a story from my past.
  5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  6. If I get dementia, treat me the way that you would want to be treated.
  7. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
  8. If I get dementia, don’t talk about me as if I’m not in the room.
  9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
  10. If I get dementia, and I live in a dementia care community, please visit me often.
  11. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
  12. If I get dementia, make sure I always have my favorite music playing within earshot.
  13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  14. If I get dementia, don’t exclude me from parties and family gatherings.
  15. If I get dementia, know that I still like receiving hugs or handshakes.
  16. If I get dementia, remember that I am still the person you know and love.

These 16 things make so much sense to me. It’s basically saying, “treat me as Brian”. I know there are some things listed above that “may seem” wrong, however, don’t look at it as wrong. People who are Living with a Dementia-Related Illness may sometimes have their own reality. I go through periods of time when my own reality may be skewed. If someone tries to correct me and guide me towards the reality they have, especially when I’m in my brain fog, let’s just say it usually does not end up pretty for I become argumentative, unreasonable, foul-mouthed and even more confused as I was to begin with. I know this because I ask Maureen to tell me, when I come out of my fog, if I did anything mean or say anything foul. I try to learn from it, but sometimes it just doesn’t stick.

I know I rambled and may have gotten off topic but, this is what happens sometimes with those of us living with Dementia.
Some of my friends may have seen me acting in a peculiar way when I was in my fog. That could be a reason they stopped keeping in contact with me.
Some other friends may have had a family member who recently passed away with a Dementia-Related Illness. It may be too hard for them to see me going down that path.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.

Whatever your reason is for not staying in contact with me or someone else who is Living with a Dementia-Related Illness, those reasons are yours and yours alone. Just know, it’s OK. We may wonder why but the thing about Alzheimer’s and Other Dementia-Related Illnesses, we may just forget . . . until we see those Memories pop up on our Social Media feed.

Until Next Time . . .
PEACE

B

Lions, Tigers, Bears & Covid-19…OH MY!

Hey, have you heard about that COVID-19 thingy? It’s EVERYWHERE in the world, well, almost everywhere. Antarctica is the only continent with no confirmed cases of  #Covid19. The impacts of Covid19 are now being felt at the North Pole for planned aerial surveys and resupply flights have been canceled.

What does this have to do with Dementia Strong? NOTHING, nothing at all . . . or does it?

On any given day, those of us who are Living with a Dementia-Related Illness usually spend a lot of time inside. Sure, we go walking to get exercise, we go to the grocery stores with our loved ones, we go to #Starbucks, we may even take an occasional trip to the Grocery Store if we feel like it, as long as we dress in our Hazmat Suits. But there’s a huge difference between being inside because we feel more secure and less anxious and being “MADE” to stay inside for we don’t know who has or who hasn’t been exposed to someone with the virus.

We can no longer go to our favorite restaurant to have our favorite meal because you can no longer go inside. You can get it to go, but it’s just not the same when you realized you’re eating your favorite meal from a styrofoam container.

Visiting with your friends and family means using #ZOOM or #FaceTime or #Skype or #HouseParty or any other ways we can make video calls. Yes, it’s nice to be able to see their faces, hear them laugh, and find out what’s been going on with them, but the physicality is not there. You can send a virtual hug, but it doesn’t have the same effect when you can’t hug them. You can’t even visit them in a hospital unless you’re wearing a mask and gloves. It’s the little things that are missed the most, especially when we are ordered to follow the rules.

I know I mentioned earlier about going to the grocery. Maureen and I still go about once a week and yes, we follow the arrows on the floor at Publix telling us which way to go, and yes we wear our masks, and yes we bring our wipes and wipe down the baskets, even though we see the employees wiping them down before we do, and yes we follow Social Distancing, but yet, when we get back into the car, we start wiping everywhere. Talk about anxiousness setting in.

Maureen tells me “you know, you don’t have to go. I can do this by myself.” I realize she can but when it’s the only time during that particular day that I can get out of the house, I jump at the chance. I then started to wonder, does she say that because she may want to get out of the house by herself? We are together 24/7. Surprisingly, no one has been harmed during our “Corona Vacation”!

I must say, whether it’s been a day, 6 months or 10+years you have shared your life with someone, when you spend 24/7 with that person(s) for weeks and weeks, you learn A LOT about them. Some things you just don’t want to know. You can become closer and then distant, all in a 5 minute period.

Throw Dementia into the mix, well, that brings it to a whole different level.

I’m not trying to single “US” out but, the law should have stated, “practice social distancing and treat everyone like they have a Dementia-Related Illness” then they would have surely stayed away from one another.

No, I’m not looking for pity, it’s just a fact. Friends don’t usually call unless they are Dementia Friends or are related to Dementia Friends in one way or another.
They don’t visit, because, you know, they may catch it, even though we are NOT CONTAGIOUS!
They’re afraid to speak to us for . . .
– we may not understand what they are saying, or
– we may not be able to respond to the questions they ask, or . . .

Anyways . . . continue your #SocialDistancing, wipe down anything BEFORE you touch it and then wipe your hands AFTER you touch it, wear a MASK, and just be kind to EVERYONE. It’s a very unusual time for ALL OF US so just remember, although you’re wearing a mask out in public, your eyes can still show that you’re smiling!

Y’all Take Care,
Until Next Time . . . PEACE!

Brian

Don’t DO . . . BE, except . . .

“When you “DO” for someone what they can do for themselves, you disable them emotionally.” ~ Jack Hosman (Maureen’s Dad)

I believe I mentioned this phrase before, “DON’T DO, BE” but in the “Dementia World” it is so very important and worth repeating.

Sometimes, Care Partners, family members and friends may see a PLWD (Person Living With Dementia) struggling to do something and their normal reaction is to jump right in and do it for them. You don’t want to see your loved one / friend struggle, so you help them.

Unbeknownst to you, your loved one / friend get’s extremely frustrated and lashes out at you. In your mind, you were only trying to help them.
In the mind of the PLWD, you took away their ability to figure it out for themselves and, without asking, jumped right in and did it for them. In a way, you paralyzed them.

I can talk about this at length for it is something Maureen and I struggled with when our relationship started and we continue to do so to this day. You see, she is a “DO-ER” and a “FIXER”. It’s just who she is.
On the other hand, I am a stubborn S.O.B. (and a slow learner) and I can do ANYTHING and EVERYTHING I set my mind to, but then reality (ALZHEIMER’S) steps in. That’s when I ask for help.

I have to say, most of the time Maureen is very patient with me. Of course that has a lot to do with my responses to her question, “Do you need help?” If I answer her in a not-so-nice manner like, “NO!!! I CAN DO THIS!” she gives it right back at me. She doesn’t do it to be mean, she does it because I have asked her to treat me as she would anyone else. I don’t want any special treatment.

When I am in my “FOGGY STATE of MIND” she doesn’t ask me anything for I am not able to answer her questions. I can barely make sensible words (from what Maureen tells me at a later time) but I still try. That’s the stubborn part of me that is, I guess, always with me.

You see, when I first started my Advocacy back in the beginning of 2015, I started using my slogan, “I Have Alzheimer’s, BUT, It Doesn’t Have Me” because I was bound and determined not to be recognized as Brian, the guy with Alzheimer’s. I wanted to still be known as Brian, the guy who is Living Well with Alzheimer’s and he doesn’t allow it to define him. I still believe that to this day. I figure, if I allow it to define who I am, then I have lost the battle and I am nowhere near that stage of my life yet. I still have a lot to do and a lot to say.

OK, I got a little sidetracked. Back to “Don’t Do . . . BE.”

As the quote stated at the beginning of this post, doing for someone without asking “disables” them. It doesn’t physically disable them, but it does emotionally disable them. It takes away their confidence and when it happens over and over again, they lose their self-confidence and increases their doubt as to what they can and cannot do. This could start a mental decline and that’s what I fight, every day, not to go down that path. I know it will happen but NOT TODAY!

Actually, Maureen not only allows me to “BE” but she now asks me to assist her with things she is struggling with. That gives me such a boost of confidence and strengthens our relationship.

One last thing I would like to mention is for the Care Partners that are assisting their person in a Care Community. What if your person is non-verbal? How do you know if they are struggling with something?
That would happen over time, as you get to know your person, you would become more familiar with the non-verbal signs of them struggling and they may become more comfortable with you assisting them. It becomes a partnership as well as a relationship . . . one person helping another.

So, my main message / suggestion to you is this, “if you see your loved one struggling with something, don’t be so quick to jump in and do it for them. Ask them if they need some assistance. If it becomes something that could lead to them hurting themselves, you may want to ask them again to avoid any type of injury. Yes, I know it’s a slippery slope but as time goes along, you and your person will start working as a team and they may actually start asking for your help instead of waiting until it frustrates them. That is something I still struggle with but, more times than not, I ask Maureen for assistance and she is only too happy to jump right in.

Just remember, “Patience is a Virtue!”

Until Next Time . . .
PEACE

~Brian

 

Changes in Lattitudes, Changes in Attitudes …

I know it’s been quite a long while since my last blog post but I had a lot of things going on in 2019. Please excuse my absence but know, my posts will now be more frequent.

As Jimmy Buffett sings, “It’s those changes in latitudes, changes in attitudes
nothing remains quite the same.”

When you stay in one place too long (or maybe I should say, when “I” stay in a place for too long,” it’s time for a change.
I spent the first 30 years of my life in New Orleans, LA. It was a great place to grow up. Mardi Gras, Saints, food, friends, phenomenal music, food, family, fun, food . . . (did I mention FOOD?) I mention food because it was a huge part of my life . . . 285lbs of huge and probably the cause of my Type2 Diabetes and Heart Disease, but I digress.

When 1990 rolled around, after a divorce, it was time for a change. I had met someone and she moved from New Orleans to Pensacola, FL (her home) and asked me to join her there . . . so I did. Sadly, that relationship ended 7 years later but I had grown to love Pensacola so, I stayed. I made new friends, found my niche in Public Relations and Marketing and was very happy.

Through a few more relationships, a diagnosis of Type 2 Diabetes, 3 heart attacks, a diagnosis of Alzheimer’s Disease, a brief move to Knoxville, TN, questionable decisions, neck surgery, back surgery and a triple bypass in July of 2019, the third 30 years was approaching. I had no idea what waited in store for me. Then, Maureen entered my life, at least that’s when I “THOUGHT” she entered my life.

I say Maureen entered my life in 2019, but unbeknownst to me, I actually met her in 2014 (I was married at the time) . . . again in 2015 (still married) … again in 2016 (still married) … again in 2017 (yup, still married), skipped 2018 (divorced) and then in 2019, well, y’all know how that story ended and is still being written! 🙂

From what Maureen says, it was all up to me.
I say, “I don’t remember meeting her until 2019″.
She says, (“WOW, guess you weren’t impressed”)
I say, “I have Alzheimer’s.
She says, “Your subscription for using the Dementia Card has expired and can no longer be used” and she wasn’t kidding.
I say, “WHATEVER” and roll my eyes!

What I’m trying to get at is I moved to Largo, FL in December of 2019 to start my life with my LIFE PARTNER. It’s ironic that in 1990 and 2019 (almost the 30-year mark) I made yet another move. What I can say is being a stone’s throw away from Tampa, St. Petersburg, Clearwater and an hour and 14 minutes away from the “Happiest Place in the World”, I have finally found my forever home and my forever person.

When I told some friends and family that I was moving 700 miles away, let’s just say I was “cautioned and reminded” about my past moves by those same friends and family. I was once quoted as saying, “if I ever say, ‘HEY, I’ve got a great idea. I’m going to pack all my stuff, drive hundreds of miles to a new place, to a city I have never been to, and start my life over again . . .” just reach over and slap the CRAP out of me and say, you stupid, stupid man, haven’t you learned anything?'”

Well, no one did that and I’m thankful for I am sure it was not going to be an easy slap. I also know they all meant well and I hold no negative feelings towards any of them. They were doing it all out of love and I appreciated their support . . . and still do.

So, here I am, starting over, AGAIN, and as you may have heard others say, “BUT THIS TIME IT’S DIFFERENT!”  this time, it really is different.

We are approximately the same age (“I won’t say who’s older by 7 months but it’s not me), we both love music, movies, family, we work out at the gym (she more than me but I’m improving), we love one another but we also like each other. We started out as friends and that friendship, as well as our love, strengthens daily. Has it all been a bed of roses? NO, but I have learned that sometimes, the hard/difficult things in life are so much more rewarding when they are conquered than the easy things.

For all the folks who were worried about me making this move, look at it from Maureen’s perspective. She was questioned also by the people who loved and cared about her.
“Are you sure you know what you’re doing?”
“You know he has Alzheimer’s, right?”
“Do you know anything about being a 24/7 Care-Partner?

Funny thing is, I also wondered if she knew what she was getting into. I told her:
“life with me can change by the day, the hour and the minute.”
“I forget stuff you may have told me yesterday, or an hour ago, or a minute ago!”
“I have Alzheimer’s anger which may or may not be directed towards you. I may not even know why I am angry.”

Her response to me solidified my decision to move.
She replied, “I love you. You are going to have to put up with me as well. I’ve been living on my own for 13 years! We’re just going to have to get used to it. Failure is NOT an option. Plus, now that all your stuff is unpacked, I ain’t helping you pack it up again unless we are both moving to a new place!
I just love it when she gets all sweet on me!

Just this morning, I came up with an analogy of who we could be compared to.
Maureen is like a Cheetah.
(The cheetah is the fastest land animal in the world, reaching speeds of up to 70 miles per hour. They can accelerate from 0 to 68 miles per hour in just three seconds.) As soon as morning comes, she is up, moving at lightning speed, moving in circles around me as I try to figure out what day it is.

As far as me, I’m more like a Sloth.Image result for sloth I move at an extremely slow speed for it takes some time for my brain to kick in, some days longer than usual. I just like to take my time, taking in the beauty of the day, taking photos and sometimes, just sitting and listening to music, letting the memories float in and out depending on the song I am listening to.

Maureen had to get used to that.

We also realized, upon watching the new (and old) episodes of “Mad About You” with Paul Riser and Helen Hunt, that our interactions are very similar to theirs. We laugh at them and then realize we are seeing ourselves in their characters and laugh even harder.

That is one thing we do a lot of . . . we laugh A LOT!

And so, the story of our lives continues to be written, one page, one chapter at a time, full of love, laughter, tears, and smiles. We still learn a little something new about each other every day and can’t wait for what awaits us tomorrow.

Now that 2020 has rolled around and we are both turning 60 this year, we realize the time we have remaining is NOT going to be spent just talking about the things we want to do. We are going to get out and DO the things we want and have dreamed about doing.
Yes, there will be pictures and stories to share on facebook and Instagram (thebrianleblanc)

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

Ready or Not, THE Season ’tis Here!

a-charlie-brown-christmasIf you’re a Baby Boomer like myself, you will probably recognize the photos from “A Charlie Brown Christmas.” For me, it brings back memories of happy, simpler times. That’s where Charlie Brown lived … in the simple times. Nothing really stopped him from doing the things he wanted to do no matter what others thought. He saw the beauty in things others didn’t. He was hopeful and did things in his own time. He was trusting … sometimes, too trusting.

Charlie Brown was just a simple guy who always saw the good in people, never judging, never holding a grudge. He’s described as, “Good ol’ Charlie Brown” is the lovable loser in the zig-zag t-shirt—the kid who never gives up (even though he almost never wins). He manages the world’s worst baseball team…yet shows up for every game. He can’t muster the courage to talk to the Little Red-Haired girl…yet keeps hoping. Even though he gets grief from his friends, his kite-eating tree, even his own dog, Charlie Brown remains the stalwart hero.”
CB Football
He is forever hopeful that Lucy won’t move the football. I think most of us wishes it will happen one day, so we cheer him on that he will, get to kick the ball at least once . . . but not this time. Lucy does what she ALWAYS does. She moves the ball away and Charlie Brown lands flat on his back.

We weren’t really surprised were we?
Charlie Brown was! As I said before, he always sees the good in people and he trusts they will not do anything to cause him harm. He trusts Lucy time after time. Why? Because that’s who he is.

(Just so you know, this post is not about Charlie Brown, but, you’ll understand in a little bit.)

Image result for charlie brown christmas tree

Lastly, there’s the Charlie Brown Christmas Tree that, in his mind, was the perfect tree. Of course, no one else but Charlie Brown saw the beauty of the simple little tree, and, as usual, they all laughed and made fun of the tree as well as him, “The Blockhead”, and hurt his feelings . . . AGAIN!

Maybe it was the Christmas Season that got to them, for this time, they saw just how much they had hurt Charlie Brown. 

Image result for charlie brown christmas treeWhen they saw the saddened little boy walk away as if he didn’t have a friend in the world, Linus anchored the little tree with his blanket and all Charlie Brown’s friends took the lights and decorations off Snoopy’s house and placed them on the tree. They brought Charlie Brown back to show him what they had done and he smiled so big. As with every Charlie Brown cartoon, he was accepted, everyone was smiling and singing and for a brief moment, everything was right with the world.

Now as a I said earlier, this is not about Charlie Brown and his friends. This is actually about reality in “Dementia World.”

Those of us who are living with a Dementia-Related illness sometimes feel like Charlie Brown. We have those days when we feel forgotten, dismissed, or if we don’t really matter. We sometimes come across people who we believe are our friends but turn out to be a “so-called friend” who pretend to have our best interest at heart, when all they are interested in is furthering themselves by using us to get there.

The feelings of abandonment and distrust we experience are not just about our friends but also about some  members of our family who no longer talk to us for whatever reason. We try our hardest to remember what we may have done to put this distance between us for we are certain (like Charlie Brown) it must’ve been something we did. When we come to the realization that it wasn’t us, it doesn’t feel any better.

When we are having a good day, we feel there is nothing we can’t do, so we take advantage of those days. We use our clarity to do something our minds would not allow us to do the day before, that is, if we remember the day before. Sometimes we do remember and we rejoice for the small victories. Sometimes we don’t and it’s OK because we know we’re not going to remember everything so we carry on the best we can.

Then there are the really tough days, the days when we go to kick the ball, and the ball is snatched away. On those days, we may literally fall on our backs, on our butts, hurting ourselves figuratively and mentally.  

If you’re thinking my point here is to make you feel sorry for me or for the millions of others who, like me, are living with Alzheimer’s or other Dementia- Related Illnesses you would be incorrect. Like Charlie Brown, we don’t give up . . . we CAN’T give up. Giving up is not an option. Giving up is an end and I can’t speak for everyone but I can speak for myself, I still have too much to do and I’M NOT READY TO GIVE UP!

What we do want are your friendships. We want your love. We want your understanding. This Disease is not something we asked for, this is not something we brought on ourselves, this is something that just happened to us and we are trying to make the best of the situation. 

Since this ’tis the Season, I ask you that if you know someone who is Living with a Dementia-Related Illness or any type of illness for that matter, please:

  • don’t assume we are receiving phone calls, letters, e-mails, Christmas Cards, etc. for you would probably be mistaken.
  • don’t assume we are being visited by friends and /or family for we may not be
  • don’t assume a gift card or other monetary gifts would not be appreciated
  • don’t assume anything about anyone, for you don’t know the whole story
  • the one thing you CAN assume is, “WE ARE STILL LIVING . . . WE ARE NOT GIVING UP . . . WE STILL MATTER . . . WE ARE STILL HERE!

I would like to take this opportunity to wish YOU, yes YOU, a Very Merry Christmas!

Until Next Time . . . 
PEACE (on Earth and good will towards men)

B

WHY ME???

When I started writing this blog post, I had a different topic in mind.
That topic was lost when I forgot the password for signing into this site. I then began the task of resetting the password but didn’t write it down each time I changed it. 
(yeah, I was under the assumption that I could “remember it.”) After the 4th ATTEMPT, I wrote it down and another topic, or rather a question, popped into my mind . . . WHY ME???

I think I’ve asked that question to myself, probably over a thousand times during my almost 57 years on this planet, but each time, I came up with a logical answer . . . 

For instance, “Why did I get punished” was a question I asked myself regularly during my childhood. My most common answers were . . .

“Talking during class time/church or any other place where I was NOT SUPPOSED to talk.”

“Arguing with my teacher/classmate or anyone else I disagreed with during a time when I was supposed to be quiet.”

“Not telling the truth” (I’m still not sure how I always got caught)

“And then the time I got punished for telling the truth and was not believed, so I lied and then got punished for lying.”

You see, my sister, my brothers and my childhood were nothing like the Brady Bunch. Instead of our Dad sitting us down and having a “teaching lesson-like conversation”, let’s just say we had a bit of an issue “sitting down” after our “conversation.” I think you get the picture.

As the years went by, I still questioned WHY anytime something didn’t make sense to me. I usually wouldn’t let go until either I was satisfied with the answer or the person to whom I was asking just gave up answering my questions and moved on.

So, yes, I was very inquisitive because I wanted to learn. I knew that everything happened for a reason and I wanted to know what that reason was.

Then, in 1998, my world changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”

She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
She went through, not 1 but, 2 double lung transplants. She fought during all 22 years of her life.  

Mary passed away in October of 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which is in September. It was a huge surprise.

I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.

I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series.  Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.

During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.

We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.

The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson. 

The same question arose again in the very late ’90’s when my Mother was diagnosed with Alzheimer’s Disease. I thought it was hard to take Mary’s Diagnosis. Nothing in this world could’ve prepared me for this. 

My question, again, was, “WHY HER?”

Here was a woman who was the closest thing to Snow White I could imagine. People even mentioned that she even sounded like Snow White when she sang.
She was a kind, loving woman who helped take care of Mary (who I just wrote about), her Father (who also had Alzheimer’s), her Mother (who was a paraplegic), her sister (who had brain cancer), my Dad (who, for those of you that knew him, was more than a handful), other friends and relatives, and not to mention 5 children who she had during the first 10 years of 60 years of marriage.

She did everything. She was June Cleaver and Carol Brady all rolled into one. She was an amazing Mother, loving and patient wife, dependable friend, phenomenal Southern cook, extraordinary singer and possessed so many other superb qualities.

Through her Alzheimer’s Journey, she almost never stopped smiling. Even when she could no longer speak, she would hum or “la-la-la” the words to a song to try and communicate. I think she did it with me to signify our bond for loving music. She was always trying to help and to not be a burden on anyone. If she had the ability to speak she would’ve apologized to everyone for needing assistance and care. That’s who she was.

She passed away in January 2015, only 2 1/2 Months after I was diagnosed with Alzheimer’s. It was an extremely hard time, to say the least, and brought up the question again . . . WHY HER?

Like Mary, that answer came to me through my Mother. She taught me how to live life trying not to burden those whom she loved the most while still staying true to herself through her love of music, her patience and her love of family and friends.

So . . . in looking at the lives of both Mary and my Mother, both of these wonderful, strong, beautiful women who lived their lives in the best way possible, have helped me in answering my, “WHY ME?” question. 

I truly believe Mary and my Mother used their strengths throughout their entire lives and really depended upon those strengths during the last days of their lives. It started me thinking about the strengths that I have that would/has already enabled me, so far, to get me through my Alzheimer’s Journey. I had to look back to one of the main reasons why I got into so much trouble during my early years . . . “TALKING!!!”

Talking is what I have done, and still do, to this day. (just ask my family and friends . . . lol) By using my voice, I’ve been able to speak to thousands of people, telling my story, dispelling the Stigma associated with Dementia-Related Illnesses, laughing at myself as I go deeper into the Alzheimer’s Forest, using my singing talents to bring back memories to others of days gone by.

So, looking at the lives of 2 incredible women, “Mary Estelle Tycer and Norma Mae LeBlanc,” who used their strengths to, unknowingly, teach us how to live our own lives by using our own inner strengths, I’ve finally been able to answer the question of “WHY ME?” 

Thank you, Mary and Mom . . . still teaching me after all these years.
I LOVE and MISS YOU BOTH!

Until Next Time . . .
PEACE!

B