In honor of World Alzheimer’s Month, my daughter and I were asked to write a few words as to what it’s like to be a Dad with Alzheimer’s and a Daughter of a Dad with Alzheimer’s. Being today is World Alzheimer’s Day, here are our words, our perspectives, our truths.
My hope is that this brings an awareness, some clarity and raw honesty of how Alzheimer’s not only affects the individual with the disease but the family as a whole. I also hope this shows that Living with Alzheimer’s is still “LIVING”, still “FEELING LOVE”, still being “ALIVE INSIDE!”
Daughter of Dad with Alzheimer’s, from HER Perspective
Being the daughter of a parent living with Alzheimer’s is challenging, unpredictable, and the best way to learn patience. There comes a point where you find yourself, a child, not only wanting to help your parent with the disease, but also being left with no other option but to help. Luckily it doesn’t happen all at once.
It starts with helping them retrace their steps to finding their keys that they put in the fridge, to watching them struggle for a few minutes to find their car in the parking lot, to wondering if they know where a store is five minutes away from home, and then ultimately them not being able to drive anymore at all and having their license taken away. It’s a slow and steady progression, but it still hurts me all the same.
Being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind. Nothing prepares you for that, and when the time comes you have to just accept it and take it with a grain of salt. Conversations are a little harder to have, dinners aren’t as cheerful as they once were and outings have become progressively more stressful. But at the end of the day despite all the challenges, the unpredictable circumstances, and my patience running a little too thin…I still love my step dad, and I know he still loves me.
Dad, with Alzheimer’s, of Daughter from HIS perspective
Being a Dad to a daughter is special, like a gift. Throw in Alzheimer’s and it complicates the entire situation. Her helping to care for me while I live with Alzheimer’s was nowhere on my radar, but she just jumped in and never looked back.
At 22 years old, she has her own life and will not be here forever. My questions are, will I be around or aware to see her married, become a mother, to hold my first Grandchild? Will I be there to celebrate those moments with her?
I know she tires of me asking questions she has answered before but she doesn’t bat an eye. She just answers. When she comes home at the end of her work day/night, she sits with me for a few moments, asking me questions about my day that most of the time I can’t answer but somehow, she already knows the answers and helps me fill in the blanks. Funny thing is, I don’t always recognize when she does this . . . but she knows, and it breaks my heart.
I realize I must sound the same as my Mother did (she also had Alzheimer’s) when I asked her questions. I’m sure, as confused as I sound, she still treats me with the same love and kindness as I treated my Mother. I couldn’t ask for anything more loving than that.
She states, “being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind.” I don’t know anyone who would want that for any of their children. I know I didn’t and I also know my daughter doesn’t have to do what she does, day in and day out, but she does it.
My one hope is that she is far, far away when I am in need of the type of care I’ll need in the end. Until then, I try to cherish each kiss on the cheek, each moment, no matter how big, small or insignificant we share.
Yes, I still have Alzheimer’s Disease (and no, I’m still not “Faking It.”)
I know everyone wishes for (meas well as everyone else with a Dementia-Related Illness) a cure/prevention/stop of progression (no one wishes that more than me) but there’s still not any of these “yet”, so I live each day as best I can, one moment at a time.
I’m still me and “on most days” you can still talk, joke and laugh with me and I will talk, joke and laugh right back with you.
On the “not-so-good-days”, well let’s just say I have them but don’t remember too much about them, which, when you look at it from my point of view, is actually a fortunate occurrence.
That should bring everyone up to date, so let’s move on.
I don’t get out too much anymore being I am no longer able to drive. I have to depend on my family and some very close acquaintances to take me wherever I need/want to go. The “need to go” far outweighs the “want to go” because I don’t like asking anyone to take me anywhere. I do have the option to “UBER” anywhere I want to go, but I don’t usually opt for that either.
When I do get out and run into people I know, it’s nice to see them. It just reminds of years ago when I was out and about, being part of the social scene. The only difference now is the way I am greeted. (Please don’t think I am being disrespectful or ungrateful for what I’m about to say, just bear with me.) Now, when people see me, they come up and they get a sort of sad expression on their face and they say, in a very caring tone, “Hey, how are you? You look GREAT!!!” The first thing that pops into my mind is, “WOW! I must have looked like crap years ago. What I didn’t realize is the transformation I have gone through.
Let me explain:
One of the changes that comes with Alzheimer’s Disease and one that I am now experiencing is a change in my taste buds as well as in the way I smell things. Here are 2 articles I found which may be helpful for you to understand . . .
Putting 2 and 2 together, when you can’t smell and/or taste the food you are eating, you tend not to enjoy it very much and you also tend not to eat too much.
Growing up in New Orleans, I ate some of the best food in the world . . . and a lot of it. At my highest weight, I was 285lbs. I lost a significant amount of weight and usually kept it between 240lbs and 210lbs, sometimes dipping below, sometimes going a bit higher.
Recently, I did notice that my clothes were not fitting me like they used to. Some were literally falling off of me. What I didn’t realize, until I started seeing recent photos of me is how much weight I had lost. Then I stepped on the scale . . . I saw it steadily drop from 180 to 170 to 160 and now to 155lbs. (I have no recollection as to the last time I was even close to 150lbs but i think it was around the time of my birth.)
I can still recall my Mother taking me to JoAnn’s Husky Shop in New Orleans to shop for clothes. I wanted to wear “normal clothes” but my body had other plans, which usually included the delicious, mouthwatering donuts and pastries from Haydels Bakery and McKenzie’s. I can still taste those delicious buttermilk drops, hot glazed donuts and every pastry you could ever imagine. It was a little fat boys dream for they were both in a “bicycle ride” distance. (All that sugar could be why I have Type II Diabetes today, but I digress.)
ANYWAYS, back to the present . . . I started looking at recent photos of me wearing clothes that were the correct size for me and THAT is when it really hit me.
(Here are 2 photos I took right after my walk this morning August 23rd, 2017, in case any of you haven’t seen me in a while.
And yes, I know I have NO BUTT, but even at my heaviest, I still had NO BUTT! Thanks Dad!
The reason I posted these photos is because if someone hasn’t seen me in a long time and they see me now, looking like I do, no wonder I’m greeted like I am. I would probably do the same if I saw me.
Don’t worry, I still eat, I just don’t eat nearly as much as I used to. I eat healthier food, I don’t snack a lot and now I’m walking every day (or when it’s not raining or due to scheduling conflicts) .
What I’m trying to say is, I’m sorry if I thought badly of anyone for having that sad tone in their voice or for telling me I “look great” which is what you tell a sick person to make them feel better about the themselves. Ironically, looking at me now and looking at me a year ago, I kinda-sorta do look sick.
I guess another reason I didn’t see what others see is because in my mind, I’m still me, or at least a version of me.
I know I’m not as sharp as I used to be.
I know I can’t remember too much from yesterday or the day before.
I know I still have to rely on electronic devices to tell me what to do and when to do it.
I know there are things I can no longer do, but I also know why I think like I do and I also know you’ve heard it before, but it’s what I live by . . .
I Have Alzheimer’s BUT . . . it Doesn’t Have Me for I Don’t Allow it to Define Who I Am!
When I started writing this blog post, I had a different topic in mind.
That topic was lost when I forgot the password for signing into this site. I then began the task of resetting the password but didn’t write it down each time I changed it. (yeah, I was under the assumption that I could “remember it.”) After the 4th ATTEMPT, I wrote it down and another topic, or rather a question, popped into my mind . . . WHY ME???
I think I’ve asked that question to myself, probably over a thousand times during my almost 57 years on this planet, but each time, I came up with a logical answer . . .
For instance, “Why did I get punished” was a question I asked myself regularly during my childhood. My most common answers were . . .
“Talking during class time/church or any other place where I was NOT SUPPOSED to talk.”
“Arguing with my teacher/classmate or anyone else I disagreed with during a time when I was supposed to be quiet.”
“Not telling the truth” (I’m still not sure how I always got caught)
“And then the time I got punished for telling the truth and was not believed, so I lied and then got punished for lying.”
You see, my sister, my brothers and my childhood were nothing like the Brady Bunch. Instead of our Dad sitting us down and having a “teaching lesson-like conversation”, let’s just say we had a bit of an issue “sitting down” after our “conversation.” I think you get the picture.
As the years went by, I still questioned WHYanytime something didn’t make sense to me. I usually wouldn’t let go until either I was satisfied with the answer or the person to whom I was asking just gave up answering my questions and moved on.
So, yes, I was very inquisitive because I wanted to learn. I knew that everything happened for a reason and I wanted to know what that reason was.I would say I had about a 75% success rate in receiving answers. To this day, I’m not sure “some” of the answers I received were “correct” or just “made up” to shut me up, but I at least got an answer.
Then, in 1998, my world changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”
She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do. She went through, not 1 but, 2 double lung transplants. She fought during all 22 years of her life.
Mary passed away in October of 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which is in September. It was a huge surprise.
I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.
I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series. Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.
During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.
We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.
Yesterday, July 29, 2017 would’ve been Mary 41st birthday. I couldn’t help but wonder what a firecracker of a person she would be today.
The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson.
The same question arose again in the very late ’90’s when my Mother was diagnosed with Alzheimer’s Disease. I thought it was hard to take Mary’s Diagnosis. Nothing in this world could’ve prepared me for this.
My question, again, was, “WHY HER?”
Here was a woman who was the closest thing to Snow White I could imagine. People even mentioned that she even sounded like Snow White when she sang. She was a kind, loving woman who helped take care of Mary (who I just wrote about), her Father (who also had Alzheimer’s), her Mother (who was a paraplegic), her sister (who had brain cancer), my Dad (who, for those of you that knew him, was more than a handful), other friends and relatives, and not to mention 5 children who she had during the first 10 years of 60 years of marriage.
She did everything. She was June Cleaver and Carol Brady all rolled into one. She was an amazing Mother, loving and patient wife, dependable friend, phenomenal Southern cook, extraordinary singer and possessed so many other superb qualities.
Through her Alzheimer’s Journey, she almost never stopped smiling. Even when she could no longer speak, she would hum or “la-la-la” the words to a song to try and communicate. I think she did it with me to signify our bond for loving music. She was always trying to help and to not be a burden on anyone. If she had the ability to speak she would’ve apologized to everyone for needing assistance and care. That’s who she was.
She passed away in January 2015, only 2 1/2 Months after I was diagnosed with Alzheimer’s. It was an extremely hard time, to say the least, and brought up the question again . . . WHY HER?
Like Mary, that answer came to me through my Mother. She taught me how to live life trying not to burden those whom she loved the most while still staying true to herself through her love of music, her patience and her love of family and friends.
So . . . in looking at the lives of both Mary and my Mother, both of these wonderful, strong, beautiful women who lived their lives in the best way possible, have helped me in answering my, “WHY ME?” question.
I truly believe Mary and my Mother used their strengths throughout their entire lives and really depended upon those strengths during the last days of their lives. It started me thinking about the strengths that I have that would/has already enabled me, so far, to get me through my Alzheimer’s Journey. I had to look back to one of the main reasons why I got into so much trouble during my early years . . . “TALKING!!!”
Talking is what I have done, and still do, to this day. (just ask my family and friends . . . lol) By using my voice, I’ve been able to speak to thousands of people, telling my story, dispelling the Stigma associated with Dementia-Related Illnesses, laughing at myself as I go deeper into the Alzheimer’s Forest, using my singing talents to bring back memories to others of days gone by.
So, looking at the lives of 2 incredible women, “Mary Estelle Tycer and Norma Mae LeBlanc,” who used their strengths to, unknowingly, teach us how to live our own lives by using our own inner strengths, I’ve finally been able to answer the question of “WHY ME?”
Thank you, Mary and Mom . . . still teaching me after all these years. I LOVE and MISS YOU BOTH!
A friend of mine recently asked me if I had ever read the book, “tuesdays with Morrie”by Mitch Albom. She said, “he allows himself 10 minutes a day to mourn the passing of the old him. After that, he lives in the moment for the day.”
I thought about this and although I do “live in the moment”, I don’t take the 10 minutes a day to mourn the passing of the old me. To be honest, I probably take a little too much time to mourn.
For instance, I thought to myself, “I would love to read this book, but I wouldn’t be able to remember what I’ve read.” Don’t get me wrong, I “CAN” still read, I just don’t retain anything I have read. Then I started thinking of all the books I’ve read over the years and how much I enjoyed reading. Then I got sad. Instead of taking 10 minutes to mourn, I took a little more . . . OK, A LOT MORE!!! I not only mourned not being able to retain what I’ve read, I mourned not being able to work anymore. Working not only gave me a purpose but it also provided me with an income, an income that helped me provide for my family. Now, through Social Security Disability Insurance, I receive approximately 3% of the salary I used to receive. I’m thankful for receiving that but sometimes, I only look at the glass half-full.
I also mourn the loss of my driving privileges. Due to my brain hemorrhage that was discovered back in February of this year, as well as the temporary loss of my ability to speak, my Doctor strongly urged that I discontinue driving. I knew what “strongly urged” meant and I knew that would be the last day I would ever drive. I mourned a lot over that . . . and still do, however, it wouldn’t compare to the amount of time I would mourn if I hurt someone in my vehicle or in another vehicle.
“This is part of what a family is about, not just love. It’s knowing that your family will be there watching out for you. Nothing else will give you that. Not money. Not fame. Not work.” ― Mitch Albom, Tuesdays with Morrie
I mourn the loss of friends. When I told Shannon that I wanted to “talk about my Alzheimer’s” she turned to me and said, “just remember, once you put it out there, you can’t take it back.” She was right!
My thought was, talking is my strong suit. By talking about it, it would hopefully help others have a better understanding of Alzheimer’s Disease and how individuals like me can still live a pretty good life. Also, by talking about it would keep me engaged, keep my brain working.
What I didn’t know was how many people would stop speaking to/with me because they didn’t think I would be able to carry on a conversation with them. Also, as I wrote about in a previous blog post, there are those who feel I’ve been faking this whole thing.
I wish I didn’t mourn that as much as I do.
However, looking now at the glass half-full, I have met some pretty phenomenal people in the Dementia World. These individuals are some of the bravest, funniest, most intelligent people I have come to know.
I have also discovered my true mission in life and that is being an International Dementia Advocate. It gives me purpose, drive and passion to a level I have never experienced.
“Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” ― Mitch Albom, Tuesdays with Morrie
I mourn a lot of other things, too many to go into here, however, I’ve realized by writing this blog post, and although I didn’t read “tuesdays with Morrie” I read some of the quotes from the book (some of which I’ve listed here) and I made myself a note and stuck it on my desk so I will see it every day. I may have to put one on the bathroom mirror, one by my recliner, make it my opening screen on my phone . . .
Whatever it takes to remind me to keep the mourning at a minimum.
“Life is a series of pulls back and forth. You want to do one thing, but you are bound to do something else. Something hurts you, yet you know it shouldn’t. You take certain things for granted, even when you know you should never take anything for granted.”
― Mitch Albom, Tuesdays with Morrie
I’ve never tried to paint a rosy picture of what it’s like to live with Alzheimer’s. I wouldn’t be honest with myself or with you if I did that. Just know, I don’t do it for sympathy. I don’t want nor need anyone’s sympathy. All I want to do is to live the best life I can possibly live in the remaining years that I have, which I hope will be many.
Until then, I’m going to continue my Advocacy Journey, doing the best I can to share awareness and education as it relates to everything Alzheimer’s and other Dementia-Related Illnesses.
Oh yeah, and remember to mourn no more than 10 minutes a day!
Have you ever gone somewhere or had an experience that stuck with you for days, weeks or months after? I describe that type of feeling as a high (not drug induced) or a euphoric feeling, like catching the perfect wave and you ride it all the way to the shore. THAT kind of feeling.
Well, I’ve been in my “euphoric state of mind” for the past week and it was all due to a conference I attended in Atlanta, GA. The “Dementia Conference and Technology Showcase” was put on by Dementia Action Alliance of which I am a member of the Advisory Board. (being I’m a member of the Board has nothing to do with the way I’m feeling) The conference theme was Re-Imagine Life with Dementia . . . Engage – Empower – Enable. To you, they may be just words but to me, they were so much more.
I’ve been to Dementia conferences in the past and they have been great, informative and educational, but the one ingredient that was missing was inclusion. For those of us Living with Dementia, we are often spoken to or spoken about, but not heard from. Other times, we are there for other people to say, “Oh look, there are the people with Dementia! It’s so nice to see them out and about!” Kind of makes us feel like a side show at the circus.
This conference was all about us. Hearing from US! Listening to US! Learning from US!
We were not only included from the very opening of the conference, we were a big part of what the conference was all about, and then we closed out the conference.
We were on panels, we were part of break-out sessions. We were even part of an Improv event at the Buckhead Theatre with “30 Rock’s and voice-over actor ‘Jack McBrayer’.”
And the individuals we worked with, the Dementia Action Alliance and ALL the wonderful sponsors of the event . . . THEY GOT US! They Got “IT”!
I’ve given my “Alzheimer’s: Up Close and Personal” presentation to an audience in Washington, DC at the National Academy of Sciences. I’ve spoken at a conference, In Chicago, IL for a national Insurance company about what type of decisions to be made before the end of life. I’m honored to teach“Crisis Intervention Team Training” to Law Enforcement Officers and First Responders. These types of instances are what I hold near and dear to my heart.
Not to downplay anything I’ve done in the past, however, to not only attend but be a part of this conference was life changing. It wasn’t the participation as much as it was meeting others like me, others who I’ve been speaking to for years either through teleconferencing or video conferencing but have never met in person, people I have come to know and love, people who I call friends. THAT was the highlight.)
We weren’t gawked at or talked about. We were celebrated. We were spoken with. We were asked questions. We were INCLUDED in the conversation. WE MATTERED! Our Dementia-Related Illnesses were still there, but they were not what was seen.
THEY GOT IT! There was no other way to state it other than that.
And . . . somewhere along the way, we had some fun, just being ourselves, so much that a comment was made, “I’m having so much fun ‘I FORGOT I HAVE ALZHEIMER’S’!”
I may or may not have been the one to say that, but I forgot!
“Living with Alzheimer’s is not the way I wanted to spend my retirement, however, I’ve made the decision to play the cards I’ve been dealt. Although the cards are not stacked in my favor, I’m still going to bet on the positive.” ~bpl
June, the sixth month of the year, the halfway point of 2017, the month in which we celebrate Father’s Day, my wife’s birthday and generally, Summer gets into full swing. Oh, yeah, it’s also “Alzheimer’s & Brain Awareness Month”, although looking at news outlets, you would never know.
This morning, with Dallas, my faithful companion in my lap, my coffee in one hand and my Atkins Breakfast Bar in the other, I settled into my recliner to watch my Favorite Show, “CBS Sunday Morning with Jane Pauley.” This show is my go to Sunday morning show for I’ve been watching it since it’s inception in 1979. My mother (Norma LeBlanc, 1929-2015, Alzheimer’s) watched it religiously, which is how I grew to love the show.
I was a little put off this morning. Being the first show in the month of June, there was no mention of June being “Alzheimer’s & Brain Awareness Month.” I thought for sure there would be “some mention” of it, but it was nowhere to be found. I started flipping through the channels on the other morning shows and found nothing. I “Googled” the major networks and looked at their news feeds . . . NOTHING.
Before anyone says anything, yes, I am aware that the Terrorist attack in London took the top spot and wouldn’t expect any other news item to be at the forefront. My heart goes out to those who were injured and especially to the individuals (and their families) who lost their lives in a senseless manner. So very sad.
But on this Sunday, like any other Sunday, those of us who advocate on a daily basis still soldiered on, screaming at the top of our lungs, (in a Facebook, Twitter, Instagram, LinkedIn sort of way) sharing Alzheimer’s Awareness and Education. But it was business as usual. NO ALZHEIMER’S SUNDAY STORIES!
Instead, CBS Sunday Morning ran a story on HIV/AIDS, which I’m glad they at least paid attention to one of the diseases that takes lives too early. I’m also thankful for the advances in HIV/AIDS research. I can only hope for the day Alzheimer’s Disease is on the same playing field.
You may think that since I have been Living with Alzheimer’s Disease since 2014 (diagnosed in 2014 but according to my Neurologist, probably living with it for up to 10 years prior) that I’m whining. Well yeah, maybe I am a little.
I won’t speak for anyone else, however, I know there are many that will agree with me that Alzheimer’s, in my opinion, has been treated like the red-headed step-child of the disease world. Although it is the 6th leading cause of death when it comes to diseases, it has been severely underfunded when it comes to research dollars. In the last couple of months, Alzheimer’s research dollars finally reached the BILLION DOLLAR MARK, and it was just barely over the BILLION DOLLAR mark and still far behind other diseases.
Part of the reason why? Alzheimer’s is one of the most misunderstood and complex diseases there is.
Imagine how it would be if there was a way to stop the progression, prevent it from developing or even cure it. I bet the $$$ would be flowing.
I just wish Alzheimer’s was given as much attention as others.
Take Breast Cancer for instance. When November rolls around, for the very first NFL Football game that month, there is pinkeverywhere. On NBC’s Today Show, the male anchors take part in “No Shave November” campaign.
“The Longest Day is all about love. Love for all those affected by Alzheimer’s disease.
On the summer solstice, team up with the Alzheimer’s Association
and select any activity you love — or an activity loved by those affected —
to help end Alzheimer’s. Together, we will raise funds and awareness
for care and support while advancing research toward
the first survivor of Alzheimer’s.”
The Longest Day is a great idea, do something you love, in memory of someone who had Alzheimer’s or with someone that has Alzheimer’s Disease and raise money for the cause. But what about the other 364 days of the year. OK, 363 days of the year for we have the “Walk to END ALZHEIMER’s“.
Professional sports such as Basketball and Baseball take place in June. Why don’t we tap into those organizations so everyone will see PURPLE everywhere they look. I give BIG PROPS to our Double-A Baseball Team, The Pensacola Blue Wahoo’s(farm team of the Cinicinatti Reds) for working with us (The ALZ Assoc of the AL/FL Panhandle) to hold an Alzheimer’s Fund Raiser called, “Paint the Park Purple.” The event is June 12th if you would like to join us. (contact me if you would like information)
Also, Seth and Lauren Rogen do an awesome job of bringing Alzheimer’s to the forefront with their “Hilarity for Charity” event. (Hilarity for Charity® (HFC) is a movement led by Seth Rogen and Lauren Miller Rogen to inspire change and raise awareness of Alzheimer’s disease among the millennial generation. Lauren’s Mother was diagnosed at the age of 55).
I still feel we are falling short when it comes to awareness. Look at Social Media! I can post, and others can post, all types of Alzheimer’s Awareness stories, photos, articles, etc. and get “some” traction, but post a pic of a laughing baby, a drunk person falling down stairs, an adorable pet of any kind, or a nude person and it gets “A BILLION” more likes and shares than our Alzheimer’s Awareness posts. I’m not sure what that says about society but I just know it gets more likes than the stuff I post.
And to make matters worse, when we, those of us who Advocate publicly, are asked to speak at Alzheimer’s functions, we are consistently told, “well, you don’t look like you have Alzheimer’s.” I know I’ve said this before but, unless we are sitting in a wheelchair, not able to do anything for ourselves, it’s hard for others to believe we actually have Alzheimer’s. After all, we are walking, talking and living a life that’s hard for society to comprehend.
So, what do we do? I guess, for the time being, we continue doing what we have been doing. I know through my own Alzheimer’s Advocacy, I’m not going to reach every single person, but if I reach at leat 1, I’m doing what I set out to do. Maybe that’s what it’s going to take. Reach 1 person at a time, one day a time. I guess I can do that because time is something I have a lot of right now. I may as well use it constructively.
With Mother’s Day being celebrated this Sunday, I wanted to pay homage to ALL MOTHER’S (and this means all individuals who fit the role of a Mother regardless of gender) who selfishly give of themselves, day in and day out.
(Just so you know, I wrote the following Mother’s Day Blog Post 2 years ago. I re-read it for I didn’t want to re-hash anything I had already written but I thought it appropriate to repost it with a few additional words and photos. The additions will be in italics and bold.)
Holidays. There are so many holidays on the calendar that it’s difficult to keep track of them all. Some of them are legitimate and some are just made up for some reason or another. The one holiday that I truly believe is the holiday of holidays is Mother’s Day. The reason I say this is because, without Mother’s, none of us would be here. Sure, the Father’s had a little something to do it with it but the Mother’s are the ones that carry the burden.
In an effort to explain the importance of Mother’s, I went to merriam-webster.com to look up the definition of “Mother.” This is what I found: a: a female parent b (1): a woman in authority; specifically: the superior of a religious community of women (2): an old or elderly woman
First, let me say I believe Merriam-Webster needs an update.
Second, I apologize to all Mother’s, both female and male (who assume the role) for the insincerity of the definition.
While I am no expert, and not a recent guest of a Holiday Inn Express, (hope you get the joke) I would like to give my own definition, or explanation, of what a Mother is.
A Mother is someone who: – can soothe anything, no matter what the age, with a hug and a kiss – will fiercely protect her family like a lioness protects her cubs – praises their children for the good they accomplish but also holds them accountable for any and all of their wrongdoings – can make your favorite meal impossible to replicate because of her “secret special ingredient.” – can assume the role of sole provider when no other support is available or not given – can assume the role of caregiver of a spouse/significant other, parent or grown child when that individual is no longer able to support or provide for themselves. – rises from her sickbed to take care of her family no matter how bad she feels – consistently puts others before themselves – loves unconditionally
I could go on and on, however, I think you can see that a Mother cannot be defined by any one definition, especially by the definition provided by our friends in the dictionary profession. A Mother’s definition (can change on a daily or hourly basis or at a moments’ notice.) Defining a Mother is almost impossible because of the infinitive person he/she is.
In addition to caring for her children, most Mother’s are also wives, which involves taking care of a “bigger child” with a different set of issues altogether. Most of the time, that “bigger child” has no clue as to what his wife does on a daily basis because he is too busy complaining about his day, playing golf, getting together with his friends, playing X-Box, Fantasy Football, etc. (Just to be clear, I am not grouping all Men/Husbands into this category, but YOU know who you/they are.) 😉
(My Mother was a stay-at-home wife and Mother. She not only cared for her 5 children (all born within 10 years) she also cared for my Father who, those of you that knew him, could be more than a handful. She did everything that was asked of her and more.
As her own parents aged and then became ill (my Grandmother, unable to walk due to a spinal issue and my Grandfather with Alzheimer’s) my Mother and her sister cared for them.
Later, my mother helped my Sister take care of her daughter, Mary, who was taken from us in 1998 due to Cystic Fibrosis.
Then my Mother helped take care of her own sister Carol until her early death.
She was one of the strongest women I have ever known, but I see a lot of her in my Sister as well as my wife Shannon, who is now my Primary Caregiver. Like I said about my father, those of you who know me understand what a job that must be for Shannon. She is more than a wife and Mother, to me, she is My Hero!
So, for most of my life, I’ve been surrounded by these very strong women, women who have put themselves and their needs last for the benefit of the families they care(d) for.
I know there are many other Mothers in the world who are just like the women I know and love, but as usual, they fly under the radar, some staying as far back in the background as they can so that their “SUPERPOWERS” can remain a secret. However, those that truly know and love them, their secrets have long been revealed.
In my definitions of a Mother, one of the things I stated was, A Mother is someone who: rises from her sickbed to take care of her family no matter how bad she feels. When my Mother was stricken with Alzheimer’s, over time she forgot how to do things, forgot what things were, but she still tried. She still had that Motherly Instinct inside trying to get out.
Finally, when she lost her ability to speak, she would sing. (She sang in church for over 40 years and she loved movie soundtracks, especially The Sound of Music. When she would clean, she would put that soundtrack on and just sing away as she cleaned the house.) Although Alzheimer’s took away her speech, she kept that perfect pitch. No longer knowing the words she would make up words or say la la la la, but I could recognize the song. I truly believe it was her way of saying, “Here, let me make YOU feel better by singing to you!.” Even if that wasn’t true, I don’t care. No one can disprove it so I believe it to be true because that’s who my Mother was . . . and although no longer of this earth, STILL IS!
(As a side note, in the last few hours of her life, I was the one singing to her. My sister held the phone up to her ear and I sang her a song.
There was eye movement as I sang as if she was actually hearing my voice. It is said of Individuals with Alzheimer’s, the hearing is last to go. My sister and I will ALWAYS believe she heard the music she so loved. A few hours later, she passed away. With that said, NO ONE will ever tell me the power of music does not matter.)
(I’m not sure of the date of this photo but I do know this is the last photo I have of my Mom and me. She NEVER, EVER went out of the house without makeup on or her hair done, let alone take a photo with no makeup on so I didn’t dare post a photo of her with no make-up or with her hair not done. I wanted everyone to remember her how she was . . . BEAUTIFUL!
At one point during my visit, she reached for my hand with both of hers and we just held hands in silence, looking at each other, she towards the end of her Life with Alzheimer’s and I, just starting out. I’m so glad I was able to capture this moment and although we were silent, I felt we had a great conversation.
So to all the Mother’s in the world, regardless of whether you’re married, divorced, single, an adoptive Mother, a Father filling the role of a Mother, I hope your Mother’s Day is everything you want/need/hope it to be. We all know you deserve much more than just 1 day a year and hopefully, you receive it.
(I will never forget one of the priests at St. Agnes Parish in New Orleans, Fr. McCallion. He had a very strong Northern accent, but it fit right in with what we call a “New Orleans Accent.” Anyway, even to this day, at the end of his homily, I can still hear him giving his Mother’s Day wish as only he could.
” . . . and lastly, I would like to wish all you Mudda’s and Happy Mudda’s Day!”
It would get as big a laugh as it just gave me when I typed it.
So, in the words of Fr. Mac . . . HAPPY MUDDA’S DAY to my Mom, my Sister, my wife and to each and every Mother who reads this!