Our Story is From the Perspectives of a Person Living with a Dementia Related Illness and the Life / Care Partner!
Author: We Are Dementia Strong
WE Are Dementia Strong is comprised of Brian LeBlanc and Maureen Rulison.
Brian is a Keynote Speaker, International Dementia Advocate, and is LIVING with Alzheimer's Disease and Vascular Dementia.
Maureen is President of Caregiver Support and Resources, International Dementia Advocate, and Brian's Life Partner / Care Partner.
Their mission is to be open and honest about their lived experiences as a couple while navigating their Dementia Journey.
If you have any questions, please feel free to ask. When it comes to Dementia, there are NO questions out of bounds!
You can ask in the comments or you can drop them an e-mail at email@example.com.
Have an AWESOME Day!
It’s amazing what a difference a little 10lb, 8 month-old puppy can make.
It’s only been a few days but Bella seems to know her purpose. She can already detect my anxiousness, coming to lay across my lap or laying right beside me with her head in my lap, looking up at me with look on her face as if she is saying . . . “I’m right here so you can relax!” What a gift!
We’re working on the commands Deb the Trainer has already taught Bella and we are reinforcing those commands every day. We are also going to continue training with Deb via ZOOM so we can complete Bella’s training.
Bella knows she is here for a purpose and that purpose is mainly to keep my anxiousness at a minimum, to fetch my medicines when needed and replace it them when done. We will start working on that probably later this week. We don’t wan to overwhelm her or frustrate us.
It’s important that an animal has the right temperament and personality in order to fill the role of a Service Animal. It seems that Bella was destined to be our dog from the get-go. From our first interaction she was drawn to us and us to her.
Since COVID19 is not showing any signs of going away and restricting us from mingling with the public in public places, I know she will be a comfort to both of us as we navigate this Pandemic. Not being able to come and go as we please does put a strain on things and that also brings on anxiousness and frustration. I’m sure Bella has her work cut out for her.
You will hear my say, “Our Dog” and not just “My Dog”. Knowing she is a Service Dog, she has become a part of our little family. She has already made a big difference in the lives of Maureen and I and we look forward to her for years to come.
Memory is the only way home. ~ Terry Tempest Williams
This post is not about cleaning per say, but more like a rearrangement. You see, Maureen and I shared an office (our spare bedroom) and it worked for a while but with both of us having ZOOM Calls, conference calls and all kinds of other meetings, it began to be a distraction. So, since I am perfectly comfortable sitting on the sofa with my laptop, I decided to move out of the office and make the sofa my office.
The reason why I bring this up is because it shows that working together for a common goal is much easier than not.
What also happens is we find things that mean a lot to us that had been misplaced. These things can be be of little significance and some can be extremely memorable. One such memorable item appeared.
Years ago, my Step-Daughter, Asheton, gave me a book entitled, “The Book of ME” A Do-it Yourself Memoir. From what I remember, she gave it to me so that I could record events, celebrations, etc, things I would not remember on my own. She knew how very precious memories were to me and she wanted to give me a method to assist me.
“It has long been an axiom of mine that the little things are infinitely most important.” ~ Arthur Conan Doyle
With all the moving I have done in the past several years, the book was misplaced. I would search for it every now and then but would come up empty handed. I was so scared it was lost . . . that was until 2 days ago when it appeared. Maureen came across it when she was looking through some boxes. She knew how important Asheton is to me for I talk a lot about her and how much I miss her. Being she thought enough of me to get me a book I could store memories in was so very loving and caring on her part. It’s just who she is.
Throughout the book, there are quotes from different writers and authors so I may place one here and there . . . like here!
“Do not trustjust your memory; it is full of holes; the most beautiful prizes slip through it.” ~ Georges Duamel
As I started reading things I had written, (starting about 7-8 years ago, when i was 52 or 53 (pre-diagnosis, but from what I was told, I was already showing signs of memory loss and forgetfulness) I felt as if I was reading someone else’s journal. I knew I had written on the pages for I recognized my handwriting but it still seemed like it was written by someone I didn’t know or remembered.
One reason, besides the handwriting, I know it was me is when I answered this question . . . “What signature clothes or accessories do you usually wear?” I replied, “Flip-Flops, shorts and t-shirts, tropical shirts, dressy clothes but only when I have to. The rest of the time I am just, “Casual Brian”. I can’t remember who gave me that nickname but I believe it was one of Asheton’s friends. All I can say is, turning 60 in September, I’m proud to say I’m still “Casual Brian.”
“I didn’t really say half the things I said!”~ Yogi Berra
There’s a note in the book that I wrote to myself that states, “Asheton gave me this book. She said it wasn’t because I was losing my memory, but just so I can remember things in the here and now. What a beautiful gesture!” That speaks to the person she was and still is.
Every now and then, a person comes into your life and changes it forever. One of those people is Asheton Gloria Hill. I have a vivid memory of when I first met her and Bradley, Shannon’s children. It was a Christmas Party at Shannon’s house for the Advertising Department of the Pensacola News Journal, where I met Shannon. I found a comfortable place on the sofa so I could see and interact with everyone and sitting at my feet was this beautiful, blonde-haired 12 year old girl. At one point during the evening, she looked up at me and said, “you know, you can never leave here!” I asked her why, and she said, “you have brought laughter into our house!” and she hugged my leg.
“Write down the thoughts of the moment.Those that come unsought for are commonly the most valuable.” ~ Francis Bacon
I hope I never forget that memory. That reminds me, I better write that memory in my book so that I WON’T forget it.
Asheton and Bradley lost their Father in 2009 and that was a very tough time for them both. During the following years they unfortunately had a front row seat to a couple of my surgeries (back and neck) as well as the beginnings of my Alzheimer’s Journey.
I was a different person during that time. I was very angry, confused and frustrated. I was a bit of an ass during that time and they (as well as Shannon) were there to witness it all. It is said so many times, “if I could go back in time . . .” Well, until the #BacktotheFuture DeLorian can really go back in time, we all have to live with our consequences. All we can do is ask for forgiveness.
Asheton is now is living living in Oregon with her Partner Chris. I miss her terribly but I know she and Chris are very happy. My hope is that I will see her again one day while I still have my memory.
“Memory is way of holding onto the things you love, the things you are, the things you never want to lose.” ~Kevin Arnold
Until that time, I will, once again, start filling up my book with memories from long ago as well as memories from today, tomorrow and . . . . . I owe that to myself as well as to that little 12-year old, blonde-haired girl I met one Christmas in many years ago and who has now turned into a beautiful, confident and happy woman!
A few months ago, I went to renew my drivers license. The renewal date wasn’t until September but Maureen was renewing hers so I figured I would renew mine while we were there.
As we were sitting there answering questions the clerk was asking, she asked me the following question … “Do you have any type of mental illness that may prevent you from driving a vehicle safely?” I knew I had to answer the question honestly, even though I did not want to for I knew what the consequences would be.
I told the clerk, “well, I have Alzheimer’s Disease and I’m not really sure if my reaction time would be like it was.”
She apologized and told me that she could not renew my drivers license without having me tested to see if I could pass the driving test. I knew if I got behind the wheel of a car, my reaction time was not going to be enough to pass the driving test. She said she would leave it open in case I wanted to get tested but she would have to flag my license.
Maureen and I had several discussions, weighing the pros and cons of getting tested. What ended up being the straw that broke the camels back was this. Maureen told me she had noticed the my Executive Functions (making decisions, diminished by my Vascular Dementia) had gone down hill. She gave me examples of conversations we had, some I remembered but the majority of the conversations I didn’t remember.
With my inability to make snap decisions, we came to the conclusion that renewing my license was not going to happen. I understood that, but it was a sad, sad time.
Yesterday, July 21st, I went back to get an ID. Once the process was over, I was no longer a licensed driver. It hit me hard once we got back into the car. As we were pulling out of the parking lot, I lost it. I had a drivers license since I was 17 or 18 years old. Now turning 60 years old in a little over a month and a half, I no longer have a drivers license.
It was so very hard to take although I knew what I was going in there for. I went in as a licensed driver and came out with a Florida ID. It still hit me very very hard. I felt like my Dementia once again took something away from me that I treasured, something that was mine.
I remembered a story my brother Wayne told us. He took my Dad’s car keys away for he was no longer able to drive safely. My Dad forgot a lot of things due to his Vascular Dementia but one day he and Wayne were having a conversation and my Dad was just staring at Wayne. He then said, “I know you! You’re the SOB that took my car keys!” or something along those lines.
It’s funny (not Ha Ha funny) how memories will come back to me at the strangest times. It’s usually not the big memories, but the smaller, memories.
I hate what Alzheimer’s has already taken from me. I have always said from the beginning that I was not going to allow Alzheimer’s to define who I am. I think I’ve done a pretty good job of that so far. Today was a big test. Over the past 6 years, I don’t know if it was Alzheimer’s or Vascular Dementia that took away some things that I treasured and things I had taken for granted for so many years.
Now, those things (friendships, memories, dreams) are gone. I haven’t driven a car or any other type of vehicle since I’ve been here in Largo. I knew that I should not be behind the wheel of a car but I still had my that little piece of plastic that said I still had the ability or I should say, the right, to drive a vehicle.
That is no more and I need to let it go.
Maureen said “the ability to drive is not the measure of a man. The true measure of a man is his care and concern about his fellow man. And you have shown yourself to be a giant by considering the safety of others in this decision. THANK You!”
She then said, “you know what is such a comfort to me? having you in the car with me. You’re my second set of eyes, my second set of ears. You keep me safe!”
One day last week, Maureen asked me to go with her to run some errands. She was going to go to Publix and Home Depot. When she asked me to go with her, I was immediately overcome with fear and anxiety. I’m not really sure what brought it on, but in my mind I felt by walking out the door i was as going to be unsafe.
The strange thing is, just a few days before, we drove from Largo to the Everglades National Park and then to Miami Beach just to, as Maureen put it, “to blow the stink off of us!” Although we are together 24/7, we have a phenomenal relationship and love to take trips to see what we can see. However, just like everyone else, we do have our “moments”. When I say that “my moments” are epic, I don’t say that in a braggadocios way. I can go from being “ME” to a foul-mouthed, son-of-a-bitch, ASS.
I HATE the fact that I act out that way and I don’t make excuses for myself. I know it is partly my Alzheimer’s and Vascular Dementia coupled with my Anxiety, as well as I have never felt that type of fear before. As a matter of fact, I was always looking forward to getting out of the house and going places. It didn’t matter if we were running to the bank, to Publix, or I was just riding with Maureen as she ran some of her errands. I did this because being cooped up in the house all day is reminiscent of when I was living alone for a number of years. I did not want to be reminded of that time for it was unbelievably difficult, more than I ever realized.
Anyways … we didn’t speak to each other for the rest of the day and I spent the night on the sofa, not because of Maureen but because of how embarrassed and ashamed I felt. It was a long, long night.
The next day, my fear was gone but some of my anxiety was still present. That is common for me. My anxiety is an unwelcome, ever-present menace that my Alzheimer’s uses to constantly remind me that my brain is not what it used to be. It’s an ongoing battle.
The next day, Maureen and I had a conversation which was basically me trying to explain what I was feeling the day before. Maureen being Maureen forgave me but what she told me made me unbelievably sad. She said, “I know you don’t mean the things you say but it still hurts when I hear them. The good thing is, I’m getting used to it. I know it’s not “you” that is saying those things, it is your Dementia.”
That felt like a punch in the gut…a very hard punch. It was like she was giving me a pass, a pass I didn’t want or deserve. Here is a woman who opened her life to me, who cares for me, who loves me unconditionally, who runs her own business, Care Giver Support and Resources, out of our apartment, all the while trying to keep everything balanced. The thing is, she never knows which Brian is going to show up each day. It reminds me of the movie, “Sybil” https://m.imdb.com/title/tt0075296/
I’m not saying I have a personality disorder, I’m saying that my mood can change several times in day. I don’t realize it until Maureen tells me. (I ask her to tell me when these things happen.)
My goal is to get more control over these changes, not just for my sake, but for Maureen’s sake as well. She doesn’t deserve all of this but she tells me I’m worth it. I know I am a lucky, loved man but then again she is a very well loved woman!
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 NOTtreat 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)thathas 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.
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 “KNOWINGof” 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!
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!!!
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.
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!
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 @firstname.lastname@example.org our visit or Facebook Page @https://www.facebook.com/WeAreDementiaStrong/
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.
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
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.
If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
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.
If I get dementia, ask me to tell you a story from my past.
If I get dementia, and I become agitated, take the time to figure out what is bothering me.
If I get dementia, treat me the way that you would want to be treated.
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.
If I get dementia, don’t talk about me as if I’m not in the room.
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.
If I get dementia, and I live in a dementia care community, please visit me often.
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.
If I get dementia, make sure I always have my favorite music playing within earshot.
If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
If I get dementia, don’t exclude me from parties and family gatherings.
If I get dementia, know that I still like receiving hugs or handshakes.
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.
“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