For this year’s event, organisations and interested individuals can get involved by supporting awareness through contacting the Alzheimer’s association in their specific country. https://alz.org
Every September, people come together from all around the world to raise awareness and to challenge the stigma that persists around #dementia. September 2021 marks the 10th year of this vital global awareness raising campaign.
September 21st also marks World Alzheimer’s Day. For ADI, World Alzheimer’s Day typically coincides with the launch of our World Alzheimer Report. In 2021, our report will focus on diagnosis.
It is only through a truly global effort that we can raise much needed awareness and challenge the stigma and misinformation that still surrounds dementia, and we are calling on everyone to do something during September, however small or large, through our campaign #Know DementiaKnowAlzheimers.
There are many ways to get involved with World Alzheimer’s Month, whether it be sharing messages on social media or attending events and activities put on by your local Alzheimer’s association. For this year’s event, organisations and interested individuals can get involved by supporting awareness through contacting the Alzheimer’s association in their specific country.
No action is too small.
We are calling on everyone, from individuals to large organisations, including every Alzheimer’s and dementia association globally, to support World Alzheimer’s Month by getting involved and sharing our messages on social media, alongside the campaign hashtags of #KnowDementia #KnowAlzheimers.
#AlzheimersDisease, #VascularDementia, #Type2Diabetes, as well as other ailments, is not exactly how I envisioned my older years. Yet, HERE I AM, BUT NOT GIVING UP! So many other Diseases now have cures, ways to slow progressions, and have ways to assist individuals to live a good life. However, WE DON’T have those things so HERE WE ARE, STILL WAITING PATIENTLY . . . VERY PATIENTLY.
For those of us who are Living with a Dementia-Related Illness, we’re not just standing by and letting time slip away. We raise awareness, talk to the newly diagnosed to give them some hope as to what the future looks like for them. We also assist others who are further on with their disease, many now living in a Care Community. Sadly, most are forgotten and that adds to their progression. Then there are the lucky individuals who have consistent visits from their family and friends. This helps to keeps their hopes, strength and clarity strong.
I remember seeing my parents (Mother with Alzheimer’s, Father with Vascular Dementia, just slipping away, day by day. I sure didn’t expect to receive my Alzheimer’s Diagnosis in OCT, 2014 and then attend my Mother’s Funeral in January, 2015. That was a very hard time, but, I knew I had to push on.
I knew I had to do something to call attention to, not just Alzheimer’s Disease, but also ALL Dementia-Related Illnesses. That is what led me to become a Dementia / Alzheimer’s International Advocate. I do this in honor of my Mother not only to keep her memory alive inside of me but to honor her life for being one of the the strongest individuals I knew.
Our Advocacy efforts during COVID-19 took away our face-to-face speaking opportunities but we were, however, thanks to technology, able to Advocate by utilizing ZOOM, Go To Meeting, and other online platforms. It wasn’t the same as being there in person but our messages were still delivered.
It will take something stronger than COVID-19 to stop us from Advocating. We will be taking the stage once again (virtually) to continue telling our stories, our accomplishments as well as our difficulties.
Just so you know, June is “ALZHEIMER’S and BRAIN AWARENESS MONTH.” You will probably be asked to post something purple on your timeline to assist us to make others aware. I hope I (WE) can count on YOU to post something PURPLE!
Until Next Time, PEACE! B
Yes, we are open and honest about the lives we live each day. We are not afraid to talk about the GOOD, the BAD and the UGLY. We don’t want anyone walking away from one of our presentations and just hear about the good. The BAD has to be shared so that everyone will walk away with a complete understanding.
We are fast approaching the month of June. June just happens to be To raise awareness of these cruel diseases, I would appreciate it if my friends could post put this on your page for today.Hold your finger anywhere on the message to copy and paste to your Timeline.💛
Dementia knows no age. It equally takes the memories of man, woman and even children. It cruelly attacks our most recent, precious memories, leaving us with our long-term memories, which allows us to remember what was but not yesterday or today. It can stop our brain from functioning at a moments notice like a pitch black curtain descending in our heads, causing us to lose our words and complete thoughts in mid conversation with no way to retrieve them, leaving us standing there with a blank expression. No matter what we do to try to stop it, DEMENTIA MARCHES ON!
I’m not writing this to depress you or to make you feel sorry for those of us that are living with a Dementia-Related Illness, I’m just trying to help you understand what we experience, sometimes for a minute, an hour, a day or days. To put it bluntly, IT SUCKS!!!
What I do ask you is to not feel sorry for us. I ask that you to interact with us just like you would anyone else. But wait . . . that’s not all!
Dementia not only affects memory. There are also side effects that come along with our Disease. Some, but not all are anger, emotional roller coasters, hallucinations, depression, anxiety, difficulties with visual and spatial abilities, problem solving, difficulties handling complex tasks, difficulties with planning and organizing, and later on, difficulties in completing every day tasks and more issues as we progress. To make matters worse, according to #AARP, some scientists say there is compelling evidence that the negative effects of the COVID virus could last even longer, possibly creating a surge of cases of dementia and cognitive decline years down the road.
I could go on and on but, I don’t want to and I think you get the point.
When 2021 was approaching, I realized that I was entering my 7th year of my Alzheimer’s journey and my 3rd year of my most recent diagnosis of Vascular Dementia. Has that stopped me from #LIVINGWELL? The answer to that question is NO! If anything, it pushed me forward to do things I might not have done before.
In 2019, I moved . . . again, but this time staying in FL. I moved to Largo to join my Life Partner / Care Partner Maureen Rulison. She has been a blessing in disguise, (she says she is not in disguise) organizing all my medications, vitamins, setting me up with my new physicians and basically helped organize my life. Adding to my list of addresses, we just recently moved to, what we hope to be, our forever home. (the U.S. Postal Service just breathed a sigh of relief! hahahah) We talked a lot about living on the water. With Maureen’s determination and the stars aligning, we were lucky to find what we were wishing for. Our backyard is Tampa Bay (the body of water, not the area) and the dolphins and birds greet us with a good morning every day. It’s surreal to live in a beautiful location and this location and all that it offers does help with my anxiety.
I’m saying this here and now, unless we win the lottery, we are NOT moving again.
I feel like I have jumped around a lot with this post, but I know I haven’t written a new BLOG post in quite a while so I had some catching up to do. My New Orleans friend of hundreds of years, Giorgio, texted me the other day with this message . . . “Good Morning my friend . . . I’m noticing there’s only 5 days left in January. When are you going to make your January post?”
Well Giorgio, here ya go my friend. Thanks for the heads up and not allowing me to get lazy. I need that push every now and then.
I would also like to thank all those who follow me and send your encouraging words. It really means a lot.
If I could leave you with words of encouragement . . . “If you are LIVING with a Dementia-Related Illness, don’t give up! If you know someone who is LIVING with a Dementia-Related Illness, drop them a line. It may be just what they need . If you can’t decide whether or not to keep in contact with someone who is LIVING with a Dementia-Related Illness, the answer is ALWAYS, YES!
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!!!
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!
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.
“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.
If you’re a Baby Boomer like myself, you will probably recognize the photos from “A Charlie Brown Christmas.” For me, it brings back memories of happy, simpler times. That’s where Charlie Brown lived … in the simple times. Nothing really stopped him from doing the things he wanted to do no matter what others thought. He saw the beauty in things others didn’t. He was hopeful and did things in his own time. He was trusting … sometimes, too trusting.
Charlie Brown was just a simple guy who always saw the good in people, never judging, never holding a grudge. He’s described as,“Good ol’ Charlie Brown” is the lovable loser in the zig-zag t-shirt—the kid who never gives up (even though he almost never wins). He manages the world’s worst baseball team…yet shows up for every game. He can’t muster the courage to talk to the Little Red-Haired girl…yet keeps hoping. Even though he gets grief from his friends, his kite-eating tree, even his own dog, Charlie Brown remains the stalwart hero.”
He is forever hopeful that Lucy won’t move the football. I think most of us wishes it will happen one day, so we cheer him on that he will, get to kick the ball at least once . . . but not this time. Lucy does what she ALWAYS does. She moves the ball away and Charlie Brown lands flat on his back.
We weren’t really surprised were we?
Charlie Brown was! As I said before, he always sees the good in people and he trusts they will not do anything to cause him harm. He trusts Lucy time after time. Why? Because that’s who he is.
(Just so you know, this post is not about Charlie Brown, but, you’ll understand in a little bit.)
Lastly, there’s the Charlie Brown Christmas Tree that, in his mind, was the perfect tree. Of course, no one else but Charlie Brown saw the beauty of the simple little tree, and, as usual, they all laughed and made fun of the tree as well as him, “The Blockhead”, and hurt his feelings . . . AGAIN!
Maybe it was the Christmas Season that got to them, for this time, they saw just how much they had hurt Charlie Brown.
When they saw the saddened little boy walk away as if he didn’t have a friend in the world, Linus anchored the little tree with his blanket and all Charlie Brown’s friends took the lights and decorations off Snoopy’s house and placed them on the tree. They brought Charlie Brown back to show him what they had done and he smiled so big. As with every Charlie Brown cartoon, he was accepted, everyone was smiling and singing and for a brief moment, everything was right with the world.
Now as a I said earlier, this is not about Charlie Brown and his friends. This is actually about reality in “Dementia World.”
Those of us who are living with a Dementia-Related illness sometimes feel like Charlie Brown. We have those days when we feel forgotten, dismissed, or if we don’t really matter. We sometimes come across people who we believe are our friends but turn out to be a “so-called friend” who pretend to have our best interest at heart, when all they are interested in is furthering themselves by using us to get there.
The feelings of abandonment and distrust we experience are not just about our friends but also about some members of our family who no longer talk to us for whatever reason. We try our hardest to remember what we may have done to put this distance between us for we are certain (like Charlie Brown) it must’ve been something we did. When we come to the realization that it wasn’t us, it doesn’t feel any better.
When we are having a good day, we feel there is nothing we can’t do, so we take advantage of those days. We use our clarity to do something our minds would not allow us to do the day before, that is, if we remember the day before. Sometimes we do remember and we rejoice for the small victories. Sometimes we don’t and it’s OK because we know we’re not going to remember everything so we carry on the best we can.
Then there are the really tough days, the days when we go to kick the ball, and the ball is snatched away. On those days, we may literally fall on our backs, on our butts, hurting ourselves figuratively and mentally.
If you’re thinking my point here is to make you feel sorry for me or for the millions of others who, like me, are living with Alzheimer’s or other Dementia- Related Illnesses you would be incorrect. Like Charlie Brown, we don’t give up . . . we CAN’T give up. Giving up is not an option. Giving up is an end and I can’t speak for everyone but I can speak for myself, I still have too much to do and I’M NOT READY TO GIVE UP!
What we do want are your friendships. We want your love. We want your understanding. This Disease is not something we asked for, this is not something we brought on ourselves, this is something that just happened to us and we are trying to make the best of the situation.
Since this ’tis the Season, I ask you that if you know someone who is Living with a Dementia-Related Illness or any type of illness for that matter, please:
don’t assume we are receiving phone calls, letters, e-mails, Christmas Cards, etc. for you would probably be mistaken.
don’t assume we are being visited by friends and /or family for we may not be
don’t assume a gift card or other monetary gifts would not be appreciated
don’t assume anything about anyone, for you don’t know the whole story
the one thing you CAN assume is, “WE ARE STILL LIVING . . . WE ARE NOT GIVING UP . . . WE STILL MATTER . . . WE ARE STILL HERE!
I would like to take this opportunity to wish YOU, yes YOU, a Very MerryChristmas!
Until Next Time . . . PEACE (on Earth and good will towards men)
This has been a very long week + 2 days. That’s how long it’s been since I’ve lost the ability to speak.
At first, it was scary. I didn’t know how I was going to get through this. Then, my support system, comprised of Bradley (16), Asheton(22) and Shannon (I’m not telling her age!) stepped in, telling me I’m not alone in this, and that “WE” will get through this. They have kept true to their word.
So far, I haven’t received any encouraging news as to what caused this. One Dr. said it could have been the brain hemorrhage that showed on my MRI.
Another said it was the growth and spreading of plaques and tangles in the frontal lobe of my brain.
Another said it wasn’t any of those things.
So, I’m feeling very good about myself . . . NOT!!!
The one positive thing about all of this is the unbelievable support, encouragement, and love that pours in each and every day. It comes through texts, both facebook messenger and posts, twitter, Instagram, and e-mail. The organizations I volunteer for, Alzheimer’s Association (national and local) Dementia Action Alliance, Covenant Care, and Dementia Alliance International) have all sent messages of encouragement and concern. Covenant Care even went as far as sending (and hand delivering) a card full of encouragement along with apraline and pecanKing Cake. (Don’t worry, I took an extra dose of insulin. I wasn’t about to miss out on that deliciousness of sugary confection. And besides, it would’ve been rude of me if they asked if I enjoyed it and I answered with, “I don’t know, I didn’t eat any of it because I’m diabetic!” My Momma taught me NOT to be rude.)
Anyway, back to the no-speaking thing.
Being I can’t communicate, except for very few words, (Love You, Yes, No, and Pee-Pee. Just to clarify, Pee-Pee is for my dog Dallas . . . not for me!) I use a whiteboard and an app named “TextToSpeech”. You pick the type of voice you want, you type in whatever you want to say, and then hit speak. It’s very easy to use. Since I’m still able to form words in my head, I’m still able to type and write. I don’t know how, but neither does anyone else so far. I’m hoping someone, someday with be able to tell me exactly what’s going on.
On the negative side, I’ve had to cancel a number of my speaking engagements and I literally hate that. Since being diagnosed with Alzheimer’s, I’ve never had to cancel any speaking engagements. Having to do so makes me feel as if I let a host of people down especially when it comes to Law Enforcement. I always enjoyed teaching them the Crisis Intervention Team Training, where I taught them how to recognize someone with Dementia. It’s important since more and more individuals, especially baby-boomers like me, are being diagnosed with a Dementia-Related Illness. I know it is being left in good hands but . . .
I’m also getting used to not driving anywhere. It’s not the “not driving” part, it’s being isolated and dependent upon others. I’ve burdened my family enough already. Now I’m asking them to drive me places or to get me things. I hate having to ask but they never say no. They always find a way. I’ve come to the realization that I’ll never drive again and, like everything else, that will have to be OK. There’s always UBER, if I need to get out. I can use my Text to Speech App to tell them where I need to go. We’ll see.
I’m just going to continue to do what I do as best as I can. I will advocate through the written word instead of the spoken.
I will keep a positive attitude, especially when it comes to my family. They don’t deserve to have to take care of me especially with a “piss-poor” or a “poor poor me” attitude. They deserve the best me I can be and that is what I strive to do.
Some days are rougher than others. Yesterday I was in bed the majority of the day for I kept falling. My dizziness was at an all-time high. I figured the best way to deal with that and not worry my family was to eliminate my walking. So I stayed in bed.
Before I go, I just want to drive home one more thing. Yes . . . I have Alzheimer’s! Yes . . . I can no longer speak! Yes . . . It’s a pain in the ass to deal with! However . . . I’m Still Here, Living the Best Life I Can!
There are many others in the world who are just like me.
DON’T COUNT US OUT! We still have a lot of life within us.
We still have a lot to say and we’ll say it through any form of communication we are able. We will continue our Advocacy, raising Awareness and Educating about all things Dementia-Related. Even when we are no longer of this earth, our words will still live on.
“I Have Alzheimer’s BUT, It Doesn’t Have Me for I Don’t Allow it to Define Who I AM!!!”