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

Somewhere Between the Mashed Potatoes and Strawberries!

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What do you mean Mashed Potatoes and Strawberries don’t go together? Have you ever tried dipping those sweet, delicious strawberries into the creamy, buttery mashed potatoes? No? Neither have I and I doubt I ever will for I can just imagine the taste. YUK!!!

Although the title of this post may make you think I’m going to write about food, you would be mistaken. It’s more like things that don’t seem to go together but as time goes on, they do. You’ll see.
This brings me back to a previous blog post “Changes in Lattitudes, Changes in Attitudes” https://bit.ly/2ZOaY0G where I referenced the opposite traits of the Cheetah and the Sloth. If you haven’t read that post, you should, but if not, it’s OK.

When living with someone who is structured, business minded, intelligent, organized, etc . . . and the other individual is ME, well how could anything go wrong? Throw in 2 different types of Dementia as well as other medical issues, that’s when things get interesting.

Let me explain so you can see the full picture . . .


Maureen wakes up at the crack of dawn, has her Chai Tea, heads into the office and starts working. I, on the other hand, have no idea what dawn looks like (other than the dish-washing liquid) and I will usually wake up long after dawn has turned into mid-morning. I go into the office, barely awake she tells me good morning and then immediately heads straight into telling me her, my, our schedules for the day. I usually have no idea what she is talking about for I don’t remember things from one day to the next, but if she says it’s on the calendar I just nod my head and then head to the kitchen to pour myself a cup of the the Morning Nectar of the Gods, otherwise known as COFFEE, which she had already prepared for me when she got up. All I have to do is flip the switch and that delicious aroma fills the kitchen.

I then sit down on the sofa, open up the Calendar on my phone and try to make sense of what I see on the calendar and try to remember all she said a few moments ago and appreciate all that she does for me. Since COVID-19 as well as some progression of my Alzheimer’s, I would not be able to run my own life as structured as she lays it out for me. She keeps my calendar organized, my medicines organized, my appointments organized, and so much more, all while running her own business. How she does it, I have no idea, but I am so very, very grateful.

So, what does this have to do with Mashed Potatoes and Strawberries? You’ll see.

I remember back in the early 70’s when my sweet, little niece would demand that I sit and watch Sesame Street with her every morning while she ignored her own breakfast and ate mine. Although it drove me crazy sometimes, I look back and I cherish those memories and wish I was back in the 70’s to relive those moments.
Anyway, during one of the teaching moments, Sesame Street characters used to sing a song, “Which one of these things is not like the others”? or something like that.

I bring this up because that’s the way some of the morning conversations Maureen and I have during “MY” first thing in the morning.
Now granted, she has already been up for several hours and her brain is moving at full capacity. Depending upon how I wake up (foggy, dizzy, sleep deprived, etc…) she will start out as she usually does on one topic but then goes right into the next one. The problem is, I’m still trying to digest what she WAS talking about as she is already into topic #2.
I need to say, she is doing nothing wrong. I have asked her from the beginning of our relationship to NOT treat me as if I have Alzheimer’s and she does that very well. When she switches topics. and goes straight into the other one without missing a beat, she doesn’t do it to be cruel, it’s just the way her mind works and because of my requests to not give me any special treatment.

I’m not sure my mind ever worked like that so in a way, I become quite fascinated as to how she keeps things straight. Any way, after she changes the topic, it takes me a little bit to realize that not only did she stop talking about one thing and switched to another, she is already half-way through topic #2. She sees the look on my face, realizes she has lost me and she says, “where did I lose you?” I reply,”somewhere between the mashed potato’s and Strawberries!) That’s my way of saying, “my brain was filling up with information (mashed potatoes) and all of a sudden, in comes another completely different topic (she mixed in the strawberries) that has nothing to do with the topic she was just talking about and it all mixes together into one big lump of instant brain fog. Then here comes the Sesame Street song in my head (Which one of these things is not like the other“?)

“Yes you did but I don’t know where” which is why I started saying, “it was somewhere between the mashed potatoes and the strawberries.” Although they are completely different I’m not really sure how I came up with that.
Welcome into my head.

Other than they both come from the ground, they have never appeared on any menu as any entree’ or on any plate I have ever been served. All I knew it was the first thing that popped into my head that gives an example of two things that were opposite. Plus it always gets a laugh.

I don't know where" which is why I started saying, "it was somewhere between the mashed potatoes and the strawberries." Although they are completely different I'm not really sure how I came up with that.
Welcome into my head.

Maureen and I learn things about each other, sometimes daily. It helps us both to understand the other one better. Will it stop her from giving me my morning briefing? No because I have come to look forward to it. Will it change the way she delivers it to me? Maybe . . . Maybe Not. It depends upon whether or not she remembers. If not, Strawberries and Mashed Potatoes will fly!

I guess what I’m trying to say is, there is a difference between “KNOWING of” someone with a Dementia-Related Illness and “Living 24/7 WITH someone with a Dementia-Related Illness. I know there are experts, or who claim they are experts when it comes to knowing all there is to know about Individuals with Dementia and some do a very good job of explaining things, but, in my humble opinion, if you want to know from the experts, talk to either a Care Partner / Life Partner or go straight to the horse’s mouth and talk with someone who is “LIVING WITH a Dementia-Related Illness.

Either way, be prepared to be served some Mashed Potatoes and Strawberries because if you have met ONE person with a Dementia-Related Illness or One Care Partner, you have only met ONE person!

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

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

 

 

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