Are you With Me?

In Las Vegas, 1998

In Las Vegas, 1998

When I was much, much younger, I wanted a Nissan Maxima. The style of the early 80’s car appealed to me. Into my late teens -early 20’s, I wanted a white Jeep. Then, I moved to Las Vegas and got caught up in glitz and glamour and wanted a Mercedes E Class. After a visit to Glacier and Yellowstone National Parks, I was fond of Subaru Outback’s.

I never owned any of those vehicles, Money or practicality overrode any desires. But even without owning one, I grew tired of that particular model and moved onto another. Always wanting something else. I now drive a mini van. I don’t really like saying that. I don’t like thinking that I am a Van Mom. But I am and I have learned to own up to the inevitable. I have 2 kids. They play sports. Therefore, we need something that has enough room for a cooler, two bat bags, luggage and other stuff that always seems to be piled into the back of the van, including additional kids.

I no longer look longingly at a Mercedes or a Jeep or any other vehicle. I have become satisfied with what I have. I am not even sure I would buy a different car should I win the lottery.

I am typically not a complacent person. Just the opposite. Always wanting to learn something new, meet new people, see new places and always wanting to move on the next best thing.  Since I have been dealing with Alzheimer’s Disease, a situation  that I have NO control over, I am slowly, slowly learning to accept life. Accept what we have. Accept what others can give. Accept what we don’t have. Accept our fate. Boy, that last one is really hard when your natural inclination is to push back hard enough to defy fate.

When I met Jim, I stopped looking for anyone else. I knew when I met him, he was it. Over the years, I became a bit complacent and accepted our life. He was the man of the house, I was his wife with lots of opinions and most of the time we agreed on the order of things. It was just easy to travel along at status quo.

When my Mom and I went to try on wedding dresses, we browsed through the showroom and must have had 15 dresses hanging around the dressing room. I tried on the first one and said, “This is it.” Both my Mom and the saleswoman kept encouraging me to try on the others. “No need. That would be a waste of time. This is the dress.” I was sure and I have never regretted my decision.

Sometimes in life, you just know something. You know when you walk into a certain home that is for sale that this is your home.

You know when you hold your children for the first time that you will love them unconditionally forever.

You know when you find a calling or a friend or a career.  I have finally found my calling. Have you?

“First they came for the communists, and I did not speak out—
because I was not a communist;

Then they came for the socialists, and I did not speak out—
because I was not a socialist;

Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;

Then they came for the Jews, and I did not speak out—
because I was not a Jew;

Then they came for me—
and there was no one left to speak out for me.”

Martin Niemöller

This poem was printed years ago in Dear Abby. My parents cut it out of the paper and posted it on our refrigerator. I always loved the meaning behind the words. I always aspired to live up to those words. I am not sure I have had the chance in the past. Maybe I did and let the opportunity drift by without noticing what I could do. I now feel like I would not be living up to the fire and wisdom Mr. Niemöller spoke of if I don’t tell our story. If I don’t try to help others in our same situation, will I be able to look myself in the mirror years from now? If I focus just on my personal loss and our family and don’t try to help others understand, am I  doing my part to end an epidemic that is at hand? I have a voice. YOU have a voice.

I read memoirs sometimes that relate childhood experiences. Which makes me consider how my own children would write their story one day should they choose to. What would they say about their Mom? Their childhood? Their Dad?  I don’t live my life by this thought, but every once in a while I ponder the questions. When I do, I realize that I hope they would be able to look back and know their Mom loved them above all else. I hope they know that their Dad was a smart, funny, sincere man. I hope they recall days of happiness and years of contentment. I hope they realize the sacrifices and the heartache that their parents went through on their behalf. Finally, I hope they can write a story of triumph and not of tragedy.  My dream would be for them to feel as if their Mom helped others and helped bring about a cure and a change.

There is something to be said about being content, but there is also something to be said about ambition, drive and searching for more in life. Is it a sign that I don’t have the drive and spirit in me anymore because I no longer look longingly at a vehicle?

It is time to push myself even harder and further; many people are depending on me. I am depending on me. My kids are depending on me.  Lovers and parents and siblings and children are depending on me. I am ready. Who is with me?

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (6)

6 Responses to “Are you With Me?”

  1. Lisa Stevens says:

    I am “with” you!! Both of my parents had Alzheimer’s. I was their caregiver. I am definitely with you!!!!

  2. Mary says:

    Your children will look back and remember the live you two have for each other. I’m with you.

  3. Marsha Carpenter says:

    I am with you! Your children will one day be so proud of you – you just have to wait, trust a 72 year old on this. No, you no longer “want”, you just want and need to remember all the good and press on for a cure. With my husband in a nursing home now I meet someone new every day who comes to see their loved ones – and they are with you! People say “take care of yourself” – I don’t have time – like you I have people depending on me and I too am ready.

  4. Karen H says:

    My 71 year old husband was probably in moderate stages of Alzheimer’s Disease when a massive brain hemorrhage took his life just a few days ago. While I miss him so much I know I was blessed not to have to witness his dementia progress as it does. I want to find a way to help fight this horrendous disease. I don’t know where to start beside making contributions, but I would like to help families, perhaps visit patients in nursing homes and help feed and clean them like Marsha Carpenter does. She is a true advocate for these helpless people. I plan to send a letter to our neurologist asking why a private interview with a caregiver isn’t done. Karen hit it on the head, it is demeaning and humiliating for the person with AD. Any suggestions?

  5. Wendy says:

    I am with you, Karen and so are my girls…we will fight this for my husband (their dad) and for all the others who are battling this disease every day. We are up against a formidable foe, but we are STRONGER. We will not give up.

  6. Kathy says:

    Karen: Your story hits home with me, my husband also had early onset dementia but it was a rapid onset. I would like to talk to you personally if you can e-mail me at either or I have so much compassion for those dealing with situations like us. God’s blessings to you and the children.

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