Alzheimer’s . . . from the Daughter / Dad Perspective

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!”
B

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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.​

#WAM2017  #WorldAlzheimersDay2017

Until next time . . .
PEACE!

B

 

“Weighing In” on a Few Things

First, let’s do some housekeeping:

  1. Yes, I still have Alzheimer’s Disease (and no, I’m still not “Faking It.”)
  2. I know everyone wishes for (me as 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.
  3. 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.
  4. 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 . . . 

How Dementia Tampers With Taste Buds
https://www.everydayhealth.com/alzheimers/how-dementia-tampers-with-taste-buds.aspx
Food, Eating and Alzheimer’s
https://www.alz.org/care/alzheimers-food-eating.asp


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!

That’s it for now.
Until Next Time . . .
B

PEACE!!!

 

The Happiest Place on Earth

The Happiest Place on Earth

Yes, I’m talking about “THE” Happiest Place on Earth, Walt Disneyworld.
However, it’s not for the reasons you may think.

Let me explain . . . I recently came across an article by Sandy Wells of KABC News entitled, New Approach to Treating Alzheimer’s Disease Replicates Life As It was 60 Years Ago.” http://www.kabc.com/2017/01/09/new-approach-to-treating-alzheimers-disease-focuses-on-long-term-memory/

The article talks about “Reminiscence Therapy” 

Here is an excerpt from the Article:
“Specifically, how that works, and what it has shown is reminiscence therapy really reduces agitation, improves mood and improves sleep quality, all of which are major factors when you’re dealing with the challenges of facing Alzheimer’s Disease. When you think about Town Square, really, what it is, is a complete, immersive environment that’s designed around a 1950’s – 1960’s time period, specifically from 1953 to 1961.

For those of you that don’t know the in’s and out’s of Alzheimer’s Disease, the first thing to go is the short-term memories. It’s why I have trouble remembering things from day to day, week to week, etc . . . However, talk to me about things from the 60’s, 70’s and 80’s, I’m as clear as a bell. So I think it’s awesome that a Town Square atmosphere is going to be built specifically for Individuals with Alzheimer’s in mind. It will put them in an environment where they are comfortable, non-anxious and happy.

So what does this have to do with WDW? I knew you would ask that question sooner or later, so I am prepared to tell you.

My first time going to WDW was in 1976. At that time the park was only 5 years old and the Magic Kingdom was all there was. Since that time, I have been back at least 15-20 times. I’ve lost count. I have seen it grow from just 1 park to 4 and I have been so many times, I know where everything is.

The last time I was there was in September. Shannon surprised me with a trip for my birthday. We had such a wonderful time.
One thing that stood out, and still does, was when we were waiting for the Wishes Nighttime Spectacular (the fireworks). Shannon had to go to the restroom so I stayed where we had found a good spot. Several minutes later, Shannon called to tell me she was lost and couldn’t find me. She was more worried about me than being lost. I talked to her to find out her location and I knew right where she was. I told her to look for the light. I turned on my phone’s flashlight and held it up, shining it in her direction. She saw it and followed it back to me.

She asked me, “How did you know where I was? How did you know to hold up the light?”  I had no answer for her. I couldn’t explain it other than to say, “I don’t know, I just knew.”

 On our last day there Shannon and I were talking about how much fun we had and then, she told me this . . .
“Since we have been here, you have shown no signs of Alzheimer’s, you didn’t talk about Alzheimer’s and you didn’t talk to anyone about Alzheimer’s. You even found “ME” when “I” was lost. You were who you used to be and I want you to hold onto that.”


With that said, she took me to the ticket counter and upgraded my park pass to an Annual Pass. She said, “I want you to come back here as often as you can, take as many photos as you like and just be who you used to be.”  I didn’t know what to say. I was elated, emotional, speechless. I didn’t think it was possible to fall more in love with her than I already had, but I did. And no, it wasn’t because she was giving me this gift, it was the reason why she was giving me this gift. She wanted me to feel normal.She wanted me to feel how I used to feel. She wanted me to have the clearest, non-foggy mind I could possibly have in a place I knew so well.

On the ride back home, I thought a lot. I tried to think as to why WDW transported me back to an earlier, normal-brained time. I knew part of it was because I had visited there so many times that everything was familiar. However, something just didn’t click. I was still unsure . . . until I spoke with my sister.

One day, on a phone call with Linda, I was telling her about the gift Shannon had given me. I told how it made me feel being back in WDW. Then I explained to her about not being able to clearly understand why I felt that connection, that is, until she asked me a very simple question . . . “Don’t they play music all through the park?”

When she asked that question, a wave of emotion washed over me, just as it is now. I started hearing the sounds, the musical sounds of  WDW, in my head. It wasn’t a particular sound or a particular song,  it was just the most beautiful, joyous, happy sound I’ve ever heard. Linda, reminded me of my love of music and how musical therapy (listening to your favorite songs from years gone by) can transport you back to a particular time and place. All the pieces of the puzzle fit together and I finally had the answer to my question I had been pondering since September.

I’m not sure why I didn’t think of the music but then again, I’m not sure what I think or don’t think anymore. 

The reason I am bringing this up now is next week, I will be in Orlando to be on a panel for the The National AT Aging and Dementia Decision Tree Workshop. I am going there a little early so I can make a quick visit to WDW. Call it being a “kid at heart” or call it “just wanting to feel normal.” I just want to be who I was before Alzheimer’s came along and robbed me of so many things.

Thank you Shannon, for giving me a gift of love, a gift of happiness, a gift of normalcy. Whether you are there with me or I’m by myself, you will ALWAYS be in my heart.

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Until next time . . . “Have a Magical Day!”

B