Alzheimer's: The Journey

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

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 . . .

One Battle Over, One Just Beginning

Yesterday, we laid my Mother to rest. Her battle with Alzheimer’s was over and she could, once again, think with a clear mind and live out her eternity in peace.

It’s always hard  to say good-bye to a loved one. In the past, I’ve had to say good-bye to Friends, Grandparents, Aunts and Uncles, Cousins, a Niece and Nephew, and my Father. I knew it would be hard to say good-bye to my Mother, I just didn’t know “HOW” hard.

Previous to her physical departure, Alzheimer’s took her memory, her speech and her ability to take care of herself. A stroke led to her not being able to swallow liquids or food. This led to her final demise. “Garden of Memories” did an outstanding job of erasing the effects Alzheimer’s had on my Mother. My sister and sister-in-law dressed her in clothes they knew she would have loved. She was once again, in death, restored to her lady-like stature. Although that was beautiful, I was not ready for the amount of tears that would flow from within me.

You see, not only do my Mother and I share a “Mother/Son Bond,” we also share Alzheimer’s.

Riding to the funeral home, during the visitation, praying during mass and finally saying good-bye at the gravesite, I couldn’t help but think, “What will my Alzheimer’s journey be like and how will it end?”

Ever since I was diagnosed with Early Onset Alzheimer’s I started researching this horrible disease. One thing that stood out is that it is one of the most under-funded, under researched diseases. I know there are some medications on the market right now that may assist in “slowing the progress” of Alzheimer’s but there is no cure. If a cure is discovered, by the time it’s available for consumers, the cost will probably be astronomical and will be too late to do me any good.

I keep telling my self I can’t worry about what will be, so I’m committing myself to concentrate on the here and now. I have a family that loves me and cares deeply about my well being. I want to give them all the love I can possibly give. I want to make good, positive memories with them, that, although I will forget in the future, they will retain. I want to spend more time with my brothers and sister and their families to create memories with them and for them. I want my friends to know how much I care for them, what their friendship means to me and how much I appreciate them.

I will fight this fight as long as I possibly can.

This is such a cruel disease. I know there’s a reason for everything, but I can’t help question it’s existence or what purpose it serves. That goes for every disease. I know I’ll never know or understand, but that won’t stop me from wondering. Until that time, I will be an Advocate for Alzheimer’s. I will bring attention to this disease, I will do my best to raise money for this disease and hope and pray for a cure.

Mom, thank you for a lifetime of memories. I cherish each and every one and I will hold onto them as long as I can. No matter what my future holds, you will always be in my heart!

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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