Alzheimer's: The Journey

I Have Alzheimer's BUT, it Doesn't Have Me!

Let’s Change the Narrative!

Each day, I scour the news sources looking for the next “big thing” in the Dementia and Alzheimer’s World. Some days there are very interesting stories full of hope and promise and then there are days when the headlines lead you to believe the next “big thing” has been found, only to find the words, “hopefully” or “in the future” or “in the next 10 years” in the body of the article . . . you see where I’m going.

The thing I continuously see are people like me who are Living with Alzheimer’s and people who are Living with Other Dementia-Related Illnesses being referred to as Patients and/or Sufferers.

I’m not sure about you but I am NOT a PATIENT of any newspaper, magazine, documentary, news channel or TV host.
I also don’t SUFFER from my Alzheimer’s. I struggle.

Part of what I do when I’m advocating is to remind everyone that, although I have a disease that will, one day, contribute to my death, I also remind them that I am NOT anyone’s patient except for my Doctor. “XXX” is my Doctor and I am his/her patient. That’s it. No one else has the right to claim me as a patient. I find that to be highly insulting and it gets on my very last nerve.

When I, and others, are referred to as “SUFFERERS”, it also strikes a nerve. I will speak only for myself on this for I ‘m not sure if others feel like they are suffering. I don’t feel that way. Suffering means, “the state of undergoing pain, distress, or hardship.”  I can understand the hardship part from a financial point of view and on the days when I am in my fog, but I still don’t consider myself suffering.

If I offend anyone by saying this, I don’t mean to. I’m simply stating how I feel. There may be some folks out there who feel as if they are suffering. The only thing I can say to that is, each of us are individuals, and life is going to affect us in individual ways.

The focus right now on those of us Living with Alzheimer’s or other Dementia’s is “SEE ME, NOT MY DISEASE” or “PERSON CENTERED FOCUS.”
Person Centred Approach is about ensuring someone with a disability is at the center of decisions which relate to their life. What it boils down to is, who knows us better than US? Instead of making decisions for us or about us, why not include us in the conversation. Ask US what we think. Discuss options with us . Just treat us for who we are and that is human beings.

I know in the later stages, I will be unable to communicate my wishes as to what I would like or dislike. With that said, I already have an Advanced Healthcare Directive and Appointment of Agent as well as a Durable Power of Attorney. It was important to me to make sure I was making the decisions for my life. I did not want to put that responsibility on anyone else. As a side note, as long as I can still eat, there will be peanut butter, chocolate and of course there will be music.

My advice to anyone and everyone is to have these documents prepared. My advice is free and you, as an individual, can do with it what you like.

I’ve said many times, “This is NOT how I expected to spend my retirement but, it is what it is.” I try to be productive every day, BUT . . .
Sometimes I am, sometimes I’m not.
Sometimes I write, sometimes I watch Netflix.
Sometimes I just sit, look at photographs and listen to music.
Sometimes I go to Starbucks.
Sometimes I just sit and think.
Sometimes I just sit and cry,  but not for long.

I’ll admit, it’s a hard life, but I know there are others who have it worse so I don’t dwell in the darkness for long. I have loved ones who I can call day or night. I have friends, a lot fewer than what I once had (that’s a blog post for another day) that I can lean on when needed, and lastly, I have myself.

In my Alzheimer’s mind, I’m still me. I can still drive, I can still work, I can still fix technological things, I can still balance a checkbook. OK, I can’t physically do ANY of these things anymore, but that’s OK. I know what my limits are . . . most of the time.

At the end of the day when I lay my head on my pillow, I know I’m still me. I’m not everyone’s patient, I’m not suffering and I’m not the me I used to be but that’s OK. You see, I don’t worry about the things I wasn’t able to do today for when I wake up tomorrow morning, I won’t remember. I’ll just re-invent myself all over again, until the next day, and that’s OK with me.

Until next time,
PEACE!
B

Mother’s Day

(With Mother’s Day coming up, 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. I wrote the following Blog Post 2 years ago. I re-read it for I didn’t want to re-hash anything I had already written. I am reposting this 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 holiday’s 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.”Mother's Day
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 off 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 not an expert, and not a recent guest of a Holiday Inn Express, 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

A Mother's Love

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 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.)  😉

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 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 the 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. 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.) 

Mom's Hands
(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 I. She NEVER, EVER went out of the house without make-up on let alone take a photo with no make-up on. Plus, 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. 

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.

Until Next Time . . .
Peace

Mother's Day

An Alzheimer’s Poem

Tomorrow I may not recall,
The things I should have said today.
I can’t help it, it’s just how it is,
So I don’t hold back saying what I want to say.

I may not always remember your name,
But somewhere inside, there’s a memory.
With a little coaxing it comes to the forefront,
Slowly appearing, again becoming a reality.

I hate that I don’t appear to be who I once was,
But inside, I’m still me.
My reality may be a little skewed and bent,
My speech a little stuttered, not flowing and free.

These are just minor setbacks,
So I don’t need nor want your sympathy.
Yes, I’ll get worse over time,
But don’t worry, Alzheimer’s isn’t contagious, you can catch it from me.

Just remember, life is short and unpredictable,
You never know what tomorrow may bring,
So express the love you hold in your heart,
Belt out that song you so badly want to sing.

Brian – 4/26/15

Fog: It’s Not Just a Weather Condition

Fog: It’s Not Just a Weather Condition

I’m frequently asked, “how have you been” or “how are you feeling?” or “how was your day?” My most frequent response is a little foggy.”

In an effort to help everyone understand what I am trying to say, I consulted www.merriam-webster.com and looked up fog. This is what I found:

noun \ˈfg, fäg\

: many small drops of water floating in the air above the ground, the sea, etc.

: a state of mental confusion

The second definition, as you may have guessed, is the one that I refer to.

To give you an example, imagine driving down the road. Fog has set in and visibility is obstructed. You can’t see much, you’re cautious of your surroundings because of the dense fog. All of a sudden, you break through to a clearing. You can see all around you. Your vision is clear and you can proceed as normal.

Fortunately, we all don’t have to drive in the fog every day but imagine having that fog in your head, every day, never knowing when it will roll in.
You get up to get something, the fog rolls in, preventing you from remembering where you are or why you’re there.
You’re in the middle of a conversation, the fog rolls in so thick it turns to night, blocking out every thought, rendering you speechless.
You’re driving to a very familiar place, again the fog rolls in and you have no idea where you are. You have to rely on your GPS to tell you where to go.

This isn’t just sporadic or a one-time event. This is every day, several times a day, a typical day. Sometimes the fog is thicker, sometimes less, but it’s ALWAYS there. It’s my Alzheimer’s journey.

So, if you ask me how I’m doing and my answer is, Foggy with a hope of sunshine,” you’ll know what I mean. I remain positive and hopeful that the sunshine will continue to show up and burn away the fog.

Thanks for reading. Hope your day is everything you want and need it to be.

Peace!

Still Alice – A MUST SEE!!!

Still Alice – A MUST SEE!!!

Dallas News reporter Jeffery Weiss published an article about the Movie, “Still Alice” and said,
“There’s a new movie out that’s getting good reviews. ‘Still Alice’ stars Julianne Moore, a fine actor who’s been nominated for an Oscar in the role. It’s the story of a brilliant, successful woman who develops dementia. No less than Jon Stewart says it captures the loss and descent brilliantly.”

He then goes on to list the reason why he won’t see the movie . . . all because of a book he read 40 years earlier, Death Be Not Proud by John Gunther. He writes, “It was also the most terrifying thing I’ve ever read. Part of the strength of the book, why it was chosen for teenagers, is how clearly Johnny is portrayed. He was pretty much everything I aspired to be, so of course I identified with him. Which made the suffering that much more real.
Too real. For several years, any time I got a headache a little part of me whispered “Your turn!”

I read that book also. Yes, it was a tragic story about a young boy who develops a brain tumor and then dies, but then again, there are many books (I hope he has never read a Nicholas Sparks novel) that deal with similar stories. Be it truth or fiction, you can’t just bury your head in the sand. It happens in real life and there’s nothing you can do about it except deal with it.

I equate burying your head in the sand as to turning your back on knowledge. Yes, there are things in life that we DON’T want to hear about or see. I didn’t want to see my Mother and Grandfather struggle with Alzheimer’s. I don’t like looking in the mirror seeing, “Early Onset Alzheimer’s” written across my forehead (it’s not really written on my forehead, but it may as well be) but it’s there. I wish I could be like Mr. Weiss and just say, “I’m not going to deal with this today because it may make me uncomfortable.” Unfortunately I can’t.

What I can do is deal with my EOAD, speak with and support those who are also suffering from this horrible disease, share my knowledge of the latest information I come across and Live in the Moment. Each day I make memories with my family. I try to remain as upbeat and positive as I can for those are the memories I want them to recall. I don’t want them to see the dark side. As hard as I try, it does come out in their presence but they NEVER, EVER turn their back on me.

As soon as “Still Alice” comes to a theater in my area, I will probably be the first in line to get a ticket. Yes, I want to see the extraordinary performance of Julianne Moore but I also want to see how the movie portrays Alice’s future. It just may help in my own future.

To Jeffrey Weiss from the Dallas News, “for those of us who have Early Onset Alzheimer’s Disease, we wish we had the option of not seeing the things we didn’t want to see, not feeling the things we feel and not being scared shitless about our future. Sooner or later, your head will have to come out of the sand so you can breathe. When you do, instead of trying to escape from all things you are afraid of, learn from them and then share that knowledge. You never know who you are going to help.”

Until next time . . . .

I Can’t Fix Things Anymore

I Can’t Fix Things Anymore

I read a facebook post recently that I found clarifyingly interesting. A wife was talking about her husband, who has Alzheimer’s, and about the frustration he goes through when trying to fix things. It got me thinking and I realized, I was right there with him.

I was never a builder or craftsman but I used to be a really good technical guy. I could figure out computer issues, easily learn computer programs and program technical thigamabobs. I could also put things together pretty easily, if I had directions, but not without frustration, not without screws and nuts leftover and not without lots and lots of cursing, but I still put them together and they are still standing. I am proud of that fact.

Things have changed now that I have Alzheimer’s. Yes, I still try to put things together and program technical thigamabobs and learn new computer programs but, I’m no longer able to do them without assistance. That’s a hard pill to swallow. At first, I felt defeated. Afterall, I’m the husband, the dad, the one they look to when something goes wrong. Now that I’m no longer that guy, I felt as if part of me died.

So, I did what any pig-headed man would do, I continued to try to put things together and fix things. I threw things in frustration and then cursed them. I read, re-read and read again instructions that may as well have been written in Klingon. Instead of fixing things and putting things together, I made them worse. Instead of walking away with a feeling of accomplishment and pride, I slithered away in tears. It did me no good to continue down that road and my family certainly didn’t need to be subjected to that.

So, I went from a Do-er to a Helper. I now listen to them. What I mean by that is, my instinct still says, “I’m the fix it guy. I can do this!” but my wife says, “why don’t you let me help you with that?” or “You should get one of the kids to help you.” They know and understand I still want to be an integral part of this family. They know my frustrations better than anyone. They know what I want to do but they also know that I have limitations and they accept and embrace those limitations. Instead of excluding me, they include me. Sure, they do most of the work and reading of instructions, but I’m right there with them.

So yeah, I can’t fix things anymore. Alzheimer’s has taken that away from me, BUT . . . it has given something in return. It taught me that it’s OK to ask for help. It’s OK to admit to myself that there are certain things I can’t do anymore or don’t remember how to do anymore. It has brought the four of us closer than ever before. It’s not without frustration, sadness, tears and yes, still some cursing (all on my part, by the way, lol) but we work together, as a team.

I have the best family I could ever ask for and for that, I don’t care if I can’t fix anything anymore.

Until next time . . .

10 Warning Signs of Alzheimer’s

10 Warning Signs of Alzheimer’s

I came across this blog this morning and I felt it was important to share.

I am asked all the time, “How did you know you had Early Onset Alzheimer’s?”, “What made you go see a Doctor?”.
Well, I could answer those questions in my own words but since someone already did that, I will let you read part of the blog.

10 warning signs of Alzheimer’s disease

1. Memory loss that affects daily functioning: Most people forget things like names occasionally and recall them later; a person with Alzheimer’s may forget things more often and not remember them, especially more recent occurrences.

2. Difficulty performing familiar tasks: A person with Alzheimer’s may have trouble with long-familiar tasks, such as preparing a meal.

3. Problems with language: Everyone has trouble finding the right word on occasion; someone with Alzheimer’s may forget simple words or substitute words, making sentences difficult to understand.

4. Disorientation of time and place: It’s normal to forget the day of the week or one’s destination — for a moment. With Alzheimer’s, a person can become lost on their own street, not knowing how they got there or how to get home.

5. Poor or decreased judgment: A person with Alzheimer’s disease may wear heavy clothing on a hot day, for instance.

6. Problems with abstract thinking: People may sometimes have difficulty balancing a cheque book, for instance; someone with Alzheimer’s may have significant difficulty with such tasks, possibly not recognizing what numbers in the cheque book mean.

7. Misplacing objects: Anyone can temporarily misplace a wallet or keys; someone with Alzheimer’s may put items in inappropriate places: an iron in the freezer or a wristwatch in the sugar bowl.

8. Change in mood and behaviour: While everyone experiences sadness and other moods on occasion, those with Alzheimer’s can exhibit mood swings — from calm to tears to anger — for no apparent reason.

9. Change in personality: A person with Alzheimer’s can become confused, suspicious or withdrawn. Apathy, fearfulness or acting out of character may also occur.

10. Loss of initiative: Temporary loss of interest in activities can occur in most people; someone with Alzheimer’s may become passive, and require cues and prompting to become involved.

Source: Alzheimer Society of Canada.
Online: www.alzheimer.ca/en

If you are exhibiting any of these signs or if your family recognizes any of these signs, it is in your best interest to et checked.

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