This week is World Awareness Week for Frontotemporal Dementia, or also known as Pick’s Disease.  Here is a link to a blogger whose writing has been a huge help and comfort to my mom and me, as she has shared her experiences with FTD.  This disease stinks, but “It is what it is”, and God, family and friends get us through.



I have a friend who lost her mom suddenly this week, and when I spoke with her and hugged her, she looked at me, and shook her head, and couldn’t speak.

I cannot imagine her loss yet (though the odds are I will eventually), but I get her response.  Sometimes, when people ask me about my dad, I can smile and say, “oh, he’s the same”, or “oh, he’s holding his own.”

But there are some days, if you ask me about my dad, that I will flat out cry and tear up and cannot speak because my pain overwhelms me.

Because the limbo we are in right now is torture.

Frontotemporal dementia is a personality stealing, word thieving, family patience depleting crappy disease.  I struggle now with visiting with my dad.  When he first went into assisted living 18 months ago, I made sure to visit at least once a week.  It was high on my priority list, and I dragged the boys with me, and they didn’t protest too much.

But somewhere in the last year, it’s gotten harder to make the effort to go see my dad.  He knows that I am someone he should know, but he doesn’t know my name.

My Granddaddy, who has severe Alzheimer’s and who has only known me since I was nine, and whose daughter is my step mom…this man remembers my name. He also asks me how much I weigh when I see him but hey, he knows my name. And he also asks how long I’ve been redheaded (since I was 18) but hey, HE KNOWS MY NAME.  My poor dad…He knows he should know me, and he smiles so sweetly at me, and he asks me if I want to eat with him, and if I am spending the night with him, but he doesn’t know my name.

And now, when I ask him what he used to do for a living , well…”Hey, Dad, what did you used to do to earn money?  You know, what did you do to make a living?”

He looks at me, and kinda smiles, and says….”I don’t know.”  This is a man who lived his life to help people get better, who practiced chiropractic for 45 years, who held the 21st license in Alabama, who adjusted over 400 people in Africa on a mission trip and always told people about that number…and now he doesn’t even know he did that.

I wonder what Dad hears when I speak to him. The other day the caretaker and I were attempting to get him up and changed, and kept telling him, “Get up, Dad.  You have to stand up.”  He kept saying, “Okay, thank you” and sitting right where he was.  This is happening over and over. Someone suggested writing out commands but I am not sure he could process those either, but I should try.  And it’s not his hearing, because those who know me know that I am not a soft talker.

I imagine that my voice is like Charlie Brown’s teacher’s voice in the Peanuts classroom: “Whomp whomp whomp, whomp whomp”, which kinda makes me smile.  But hurt at the same time.

I have often thought of President Ronald Reagan the last few years.  He was the President of my childhood, and I have grown to admire his tenure as President and respect him as a man.  But when I think of what Alzheimer’s must have done to that great man’s mind, I cannot help but think of my dad.

This has been the hardest thing my family has ever been through, but we have become a little used to the fact that he is like this.  I might say to myself,  “hey, I want to see what Dad thinks of that” or “Dad would love to hear that”.  The sad thing is now…I don’t think like that anymore.  He will never get better. I do think of him every day. What is he doing? Is he thinking of us?  What is he thinking?  But it is not all consuming the way it was a year ago. Time will do that, I guess, but I think our minds have to do that, in order to function, and I can’t stop living just because he has stopped being himself; sometimes that makes me feel a little guilty.

But this disease is vicious, and doesn’t care.  I will continue to remind Dad of his life, but the thief that lives within his brain steals even that.  Pray for my family and all the many families affected with Alzheimer’s/dementia.  It is truly a long good bye, but my dad is just about lost to me already.


2 thoughts on “Lost

  1. tina,

    I feel your pain. I walk around in a haze most of the time since Alan’s wreck. His physical problems make him need me as a nursemaid, but his traumatic brain injury also makes him like a child at times. He always knows me. He forgets Yasmine’s name at times. His memory of the past is great. Today, not so much. I’m his caregiver, I no longer have a husband. I’m lonely, but can’t be around people. I go to church, but I miss Sunday school a lot. It’s hard. Walking has been therapy. I’m still praying for you as you go through this. Please pray for me.

  2. Tina, I am so sorry you and your family are going through this. It sounds truly awful. I have never had to go through anything like this, at least not as of yet. Mother was diagnosed with dementia. There were things she couldn’t remember but she always knew Tim, Bryan, and me. The fact you are visiting him often helps him and you. A lot of people with this disease are left alone. They may or may not realize it. It sounds like he enjoys your visits. I know you have a strong faith and that will carry you through.

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