The Fortunes of Friendship

Friends! We’ve all had them throughout our lives. We’ve had good friends, school friends, college friends, business friends and BEST FRIENDS!

The Best Friends are the ones that, if you’re lucky, last a lifetime. Sure, life gets in the way and may prohibit you from speaking to one another on a daily basis, but the communication is still there whenever you can make time. You catch up, find out what the other is doing, laugh, reminisce, and try to make a date and time you can talk again. Sometimes it works, and sometimes life and priorities get in the way. Somewhere down the road you’ll catch up and pick up right where you left off.

What happens when “LIFE” gets in the way and includes illness, maybe not to you but to a spouse, a child, a parent or grandparent. What happens to those friendships?

I can speak only of my friendships and I can honestly say, it has been been a mix of being happy, sad, lonely and surprising. I could easily blame it on many things like moving to Florida 30+ years ago, losing touch with folks who have moved and not know where they went or what they’re doing now, and I’m certainly not going to blame it on my Alzheimer’s. That would go against everything I speak about. By using that as an excuse it would make me a liar and I could no longer say “I don’t allow Alzheimer’s to define me.!”

To be honest, I don’t blame it on anything other than time and life! Those are two things that are in perpetual motion, that is until life comes to an end.

I must say, since my diagnosis in 2014, I have made some pretty remarkable friendships. Some are more of acquaintances, some are near, some are far, some are somewhere in the middle and some are re-acquaintances from decades ago. (Thank You Facebbook and other Social Media).

One such friendship I hold near and dear to my heart is with Sandy Halperin. Because of Alexander “Sandy” Halperin, I became an Dementia Advocate, a member of Dementia Action Alliance, a member of the Early Stage Advisory Group of the National Alzheimer’s Association in Chicago, IL, which opened up countless opportunities to speak at the National Academy of Sciences in Washington, DC, The National Institute of Health (NIH), and many other conferences, symposiums, and Educational Presentations.

On September 20, 2016, Sandy “literally” passed the Advocacy baton to me. He knew he was not able to do as much advocacy as he had been doing throughout the years so he passed the baton to me, with 1 requirement . . .
When it comes time that I am not able to continue my advocacy, I am to choose a recipient to pass the baton to. My name will be inscribed on the baton as Sandy did when he passed it to me. Fortunately it will not be ANY TIME SOON for I still have A LOT TO SAY!!!

The passing of the baton from Sandy to me, September 20, 2016
I brought the Baton to the Great Minds Gala in March, 2019 in Washington, DC where I gave a speech about “HOPE” as it pertains to the future of Alzheimer’s. This is where Sandy first presented the Baton as a beacon of hope.

Sandy has given permissions to Maureen and I and a few other folks to post information on his LinkedIn page. He has 30,000 followers on his page and he did not want the page to be empty of current news, stories and Research. So, we utilize his page to continue spreading the word and we are so thankful for him giving us the opportunity to speak to 30,000 of his closest friends.

Our most recent photo from February, 2020.

Sandy’s friendship is more than just a friendship. We are two people from different backgrounds but it was Alzheimer’s Disease that bonded us.
It was Alzheimer’s Disease that taught us ways to live with the Disease as well as we possibly can. It was Alzheimer’s Disease that gave us a platform to speak from.
It is Alzheimer’s that will keep our friendship going.

We both know that it will be Alzheimer’s that will cause other medical issues to take us away, but we don’t worry about that. We still have a lot to say and a lot to write.

Neither Sandy nor I want sympathy from anyone. We often talk about what we don’t want rather than what we do want. What we do want is for everyone to know we lived a full life. A life of passion, a life of hope, a life of love and a life of friendship!

Until Next Time . . . PEACE!
B

Vulnerability and Dementia

Vulnerability is Not a Strength - Mobius Executive Leadership

When I start a new blog post, I always try to think of something I already know rather than something I would have to learn. That’s not to say, I can’t learn anything new, it’s just that I am more confident when I speak or write about something I already know. I also like to use definitions so that my readers (as well as me) fully understand what I’m talking about. With that said, the definition of Vulnerability is “the extent to which changes can hurt or harm a person; the quality of being easily hurt or attacked

What brought me to write about this topic was due to a conversation Maureen and I had just the other evening. You see, for those that don’t know, Maureen and I got into a relationship long after I was diagnosed with Alzheimer’s and as recently as last year, diagnosed with Vascular Dementia. (I could spend a whole blog post on “ALL” the things I have wrong with me, but as Maureen says, “you’re just bragging, now” so I try to keep it simple. 🙂

One of the things Maureen recently brought up to me was, the future. The conversation started with talking about how our relationship was going to change as I went further into this disease. I got very angry and yelled at her, “I don’t want to talk about THAT!” She asked why and I said, “someday, you are going to have to make ALL the decisions for me because I won’t be able to make them for myself and I don’t want to think that right now. Our relationship is going to be different when you are making those decisions.”

That’s when Maureen had an AH-HA moment. She said she went from worrying what it was going to be like for her to understanding what it will be like for me when that time comes. What it will be like for me is Vulnerability.

Here is a prime example of my trust in Maureen. several months ago, I was asked to speak at Mease Manor, a Care Community here in Dunedin, FL. I actually don’t remember the details of this day, however, Maureen, being my BUB (Back-Up-Brain, a phrase I borrowed from @KateSwaffer) told me that we were going to Mease Manor where I was going to speak. Even though I had been there 3 times before and had made some wonderful memories and contacts with a number of people (especially Quyen Trujillo) I had no recollection of where Mease Manor was nor did I have any idea what I was suppose to speak about. All I knew was Maureen said we had to go there and I trusted her enough to just say, “OK” for I knew she would not lead me into any harmful situation. That’s “MY” definition of Vulnerability! 

I’m going to paraphrase for I don’t remember exactly what she said and since she is not here right now, I can’t ask her. It went something like, “you know, you put yourself in a vulnerable position, moving away from everything and everyone you knew in Pensacola to come here to Largo and start your life with me!”

Not once did I think Maureen was going to take advantage of me for the mere fact that the $1.10 I had in my bank account and my Social Security Disability was my only income, I knew she was joining me in this relationship for other reasons (my dashing personality and good looks) and I felt comfortable with that. Now, after journeying together down the Alzheimer’s Highway for a while, we have formed a very strong, trusting and loving relationship and my feelings of vulnerability have decreased to a point to where they are almost non-existent. 

I know that I am going to still experience some insecurities when Maureen is out on business appointments and I have to make decisions on my own here at home. Those decisions won’t be earth-shattering but I will still still stress over deciding what I should do.

I’ve always been an anxious person going all the way back to my childhood and it has become more prevalent now with my Alzheimer’s. What I don’t worry about is when Maureen returns home, I can discuss my decisions with her and she can then help me sort things out. She’s really good about doing that. What she won’t tell me is, I’m wrong but she does enjoy laughing at some of the decisions which makes me feel good.

Another thing I love about our relationship is that we do a lot of planning. Maureen runs her own business, Caregiver Support and Resources, so she has to stay on schedule. It helps me to stay focused on what has to be done that day, and what I can start preparing for the next day. It’s something I was never good at before but now, I am thankful that I’ve grown accustomed to it.

I know I am going to be faced with more vulnerabilities as I travel along on my Alzheimer’s Journey but having Maureen as my “Travel Partner” (I guess I’m going to have to add that to her Titles) I feel confident that she will help get me over any hurdles that we face.

I would also like to add, if this topic resonates with you would like to reach out to us, please feel free to leave comment, drop us a line @dementiastrong@gmail.com our visit or Facebook Page @https://www.facebook.com/WeAreDementiaStrong/

Until Next Time . . .
PEACE!
B

And the Question Is …

Anti-Defamation League | COVID-19 Response | New York/New Jersey

A continuing conversation has been taking place throughout the Dementia world. It’s more of a question than anything else and that question is, “How is COVID-19 affecting you?”

As an Individual living with Alzheimer’s and Vascular Dementia, I can honestly say it has taken its toll. But it doesn’t just affect those of us with a Dementia-Related Illness. It affects EVERYONE.

Let’s start with human interaction. I miss seeing my friends. When I do, instead of getting a hug, it’s either a fist or an elbow bump. For someone like me who is a hugger, I miss that, as I’m sure many others do. I know why everything has become so sterile and I understand that, but when will all things return to normal? WILL they ever return to normal?

It has also affected my Advocacy. I used to be able to travel to the destination, stand before a live audience of hundreds of people and deliver my presentation. I could easily interact with the audience and feed off their energy. Now, due to COVID-19, organizations have had to, painfully, cancel their in-person conferences and hold them virtually. Now we sit in front of a computer screen on ZOOM, Go To Meeting, Facebook Live, Skype as well as many other platforms staring at people in little boxes. It takes a bit of getting used to but, it has now become the norm. Will this become the “Forever Norm”? We will have to wait and see.

Another thing that affects me is my anxiousness. I have to admit, I was an anxious person before my Alzheimer’s diagnosis but my Alzheimer’s added another layer to it and in certain situations, it gets bad. If you’ve ever seen the movie, “Rain Man“ when Dustin Hoffman’s character goes into his anxious episodes and starts rocking back and forth, I am told that is what I do. At times I can hardly speak. Something as simple as going to the grocery store, I wear a mask but I also bring wipes to sanitize the basket or use the wipes the store supply. I know at places like Publix, they sanitize the baskets but what if they miss a spot? I can’t and won’t take that chance. Public Restrooms? Forget About It!!! If it’s not an emergency, I’ll wait until I get home. When I get back in the car I immediately use our hand sanitizer to wipe down my hands and arms. By the time we get home, I’m exhausted.

It’s hard to visit anyone nowadays, especially if you have a loved one in a Care Community. The only way to see them and communicate with them is through a window. It’s better than nothing but what about their human interactions? They surely need it more than we do. It is what it is and hopefully, one day in the near future, it will get back to normal, whatever normal will be.

In the meantime, I’ll keep sanitizing, wearing my mask, sanitizing, keep Social Distancing and keep sanitizing. Did I mention that I sanitize?

On a serious note, don’t forget to sanitize and sanitize often. You can never be too careful.

Until Next Time,

Stay Safe … and SANITIZE!

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

AGEISM Strikes Again!!!

“I chose to write this blog post today because of the positive revision of the Older American’s Act, originally written in 1965. I also chose to write today for I am having a very good “brain day”. Those kinds of days have been few and far between lately so I must take advantage of when my brain says, “Hey, use me while you can. I’m good to go!”  ~B

Have you ever heard of “Early-Onset” Breast Cancer? “Early-Stage” Heart Disease? “Early-Development COVID-19”?

I ask these questions because the Diseases I mentioned above have no age limit. You can develop Cancer before age 1. You can be born with Heart Disease. You can develop so many things in your teen years.

If you developed any of the Diseases above, no matter your age, you would be treated the same, meaning a 3-year-old will be treated the same as a 45-year-old. Same illness, just a different age group.
Do you think Jonas Salk, after developing the shot for polio said, “This is only for individuals over the age of 45!” NO! It was designed to help ANYONE at ANY AGE!

Enter Alzheimer’s Disease and Other Dementia-Related Illnesses, some of the most complex, misunderstood, stigmatized Diseases in the world.  Can you recall any legislation brought before Congress that had to be voted upon based on the age of any American Citizen for any known disease?

Thanks to Mr. Google, I found the following:

  • Alois Alzheimer noted the unique symptoms in 1906. 1906: Alzheimer’s Disease is first described by Dr. Alois Alzheimer in his patient known only as Auguste D. The patient experienced memory loss, paranoia, and psychological changes.
  • Jonas Salk (1914–1995) became a national hero when he put to rest the fear of the dreaded disease with his POLIO vaccine, approved in 1955. Although it was the first polio vaccine, it was not to be the last; Albert Bruce Sabin (1906–1993) introduced an oral vaccine in the United States in the 1960s that replaced Salk’s. (no age requirement)
  • Congress passed the Older Americans Act (OAA) in 1965 in response to concern by policymakers about a lack of community social services for older persons. The original legislation established authority for grants to states for community planning and social services, research and development projects, and personnel training in the field of aging. The law also established the Administration on Aging (AoA) to administer the newly created grant programs and to serve as the federal focal point on matters concerning older persons. (over the age of 65)
  • The Children’s Health Act of 2000 (Pub. L. 106–310, 114 Stat.1101, enacted October 17, 2000), signed by President Clinton on October 17, 2000, was brought into law to conduct a study focusing on children from before conception to 21 years of age.
  • HIV AIDS – There is no cure for HIV, but there is treatment. Without HIV treatment, your immune system can become weak and you can become sick with life-threatening illnesses. This is the most serious stage of HIV infection, called AIDS. Anyone can be infected with HIV, no matter:  Your age, Your sex, Your race or ethnicity, Who you have sex with.

Look, I didn’t ask to have Alzheimer’s Disease, Vascular Dementia, Heart Disease, Type 2 Diabetes, and who knows what I’ll get later on, but I sure as hell know that standing around crying about it sure won’t change anything. I also know there are many individuals (including some of my very close friends) who are worse off than me.

The Disease that we live with, day in and day out, a disease that robs us of our memories from yesterday and last week, a Disease that has no cure and no way to slow the progression (YET), SUCKS! Thank goodness we still have most of our memories from years ago.
What also SUCKS is that we sort of know what our end will look like. We have seen our Loved Ones go before us and at times, I wish, like the majority of folks, I wouldn’t want to know how it all ends. You just don’t want to know some things.

I know a cure or the stop of the progression of Alzheimer’s Disease and other Dementia-Related Illnesses could happen tomorrow, next week, next year or the next decade. It will happen.
Thank goodness, the reauthorization of the Older Americans Act now includes individuals under the age of 65.  All I ask is, that we continue to have the same access to programs and policies that are open to everyone else, regardless of our age.

That’s all I have for now . . .
Until Next Time,
PEACE

 

 

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

 

What do “YOU” want your Care Partners to know about You

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

Why I Do What I Do

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

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