The Care Giver Is Reminded of the First Signs.

As my wife slept in her new bedroom, this week I began going through the almost four decades of paper she had accumulated and would never throw out. I am separating the papers into several groups: to be shredded, to be tossed, to be retained myself and papers for the children.
Working for a couple of hours each day, it will take me about ten days to go through all of the 38 boxes, then one trip to the dump and one trip to a shredding company and I’ll be free of this trash that has haunted me and which she would never let me touch.

Years before she had begun the practice of typing out notes and questions for any doctor visit; perhaps this was an early sign of her disease?
Partway through the fourth box, I came across her note for her very first visit to a neurologist, just a tiny bit over four years ago.

3/5/14 First appointment

Dr. …….

-Appropriate words: I Want to say a thought, and I often can only get the first letter of a word, or a word that is wrong with some similar spelling but nothing to what I am meaning.
-When tired, thinking of other things, or trying to do something, it gets worse. Or talks too fast.
-I have just noticed that often, if I try to picture the word on my forehead, the word will come up & I can say what the picture is.
-Spelling: I used to be a very good speller. Now, frequently every day, my brain cannot remember simple spelling. ~
-Reading: I cannot read well now & sometimes not at all. I read part or all of a sentence, reading the words but not getting the meaning of simple words. Several times, not able to concentrate.
-ADD: Sometimes these feelings seem like my ADD but intensified. (ex: I can’t keep my thoughts on what I am doing (like reading) long enough to get things done or read)
-I think these things have been with me all my life, but not like this.
-Now it happens all through the day and I don’t really want to talk w/anyway except my husband & kids. I have ticks (sic): arms, legs, shoulders,chest
-My math is the same (not great), so is doing jigsaw puzzles. I can organize the house, but not my time. Strangely, when I worked at a job where I put on conventions with 23 breakout, meals, etc., I did great.

How far we have come since that time – and in such an unhappy direction.

In regards the picture above, about two weeks ago, I was having a tough day and I mentioned to an online friend that what I wanted to do was have a drink and go to bed with my blankie (a reference to a character in a comic strip who hauls around his blanket.)
Two days later a box appears containing a small, very soft blue fleece blanket with a teddy bear head at the center.
To distract her when she was moved to the hospital bed, I showed it to my wife and she took hold.
Each morning, after breakfast and clean-up, the care giver gives it to her and she holds it through the day.
At night the soft blanket with the teddy bear head is draped over a small box on the bedside table.
Just a record shot for the memory.

21 thoughts on “The Care Giver Is Reminded of the First Signs.”

  1. That note is a treasure. Glad you found it. She did such a good job explaining her issues. I hope the neurologist paid attention.

  2. Lew, great find. My wife could have written every word, right down to the ADD. As matter of fact, years before her diagnosis of FTD she was (mis)diagnosed as having ADD. I had encouraged her to pursue a diagnosis as to why she couldn’t concentrate on anything for very long. Little did I know! And I wish a correct diagnosis had been made years earlier!

    1. This all sounds so familiar. Allan didn’t have a security blanket, but had to have his phone with him all the time even though he couldn’t use it. He was frantic when he couldn’t find it. Keep trudging ahead. You won’t regret any of the caregiving you are doing.

    1. As it happened, the neurologist had only read about PPA without ever seeing a patient with it but he made the provisional diagnosis and referred us to Neurology at Johns Hopkins where it was confirmed.

  3. Most of your wife’s comments could also be written by my husband…he was also diagnosed in the spring of 2014…thank you for sharing your story…

    1. And my husband diagnosed then, too. Interested to hear which variant for all of you. Mine is PPA variant logopenic. Just about mute at this point, with only one set of words that makes me a bit crazy. Three words that he uses for everything. “I lose words”. I love him, despite the craziness.

      1. My husband also doesn’t speak at this point…needs help bathing, dressing, eating ( unless finger foods, doesn’t use utensils anymore) totally urine and BM incontinant. Has to be watched constantly, is a huge falls risk…he is falling at least every other day…Dave was diagnosed 4 years ago with PPA… Once diagnosed wouldn’t go back for other testing, said he felt stupid…I have put him on a crisis list for placement…

  4. I went thru 5 years of my wife’s comments and posts on Facebook. The decline was obvious in retrospect from perfect spelling and grammar and witty comments to barely being able to put a sentence together and in the wrong context, to just likes , then nothing. I couldn’t understand it at the time.

  5. Thank you for sharing this.
    I’m caregiver for my husband who’s in stage 5-6 . He’s getting like a child . Breaks my heart. The grief is there every day for something or someone he can’t remember.

  6. First, thank you for all the responses.
    This post has averaged about 100 reads an hour since it was put up this morning, probably because every single one of us care givers and persons with the disease remember so distinctly when the signs of what we later knew coalesced in our consciousness.
    Thanks again.


  7. Thanks for sharing. Now I have an idea what my mother was experiencing when she began to lose words in 2009 at age 68. She was still high function, very organized, social, creative…until she was not. Dx FTD PPA in 2014. By 2016 she could no longer live independently. Watching her fade away is so sad to witness.

  8. Thank you so much for sharing. This is a very good explanation of the beginning symptoms. Yet, so often a doctor may never have heard of FTD. Often these symptoms are diagnosed as stress or mental health issues.

  9. So poignant.
    For us, who really never bickered and rarely argued, we had had a few months of exactly that. One day in frustration I said “ I dont think you can explain things to me anymore and I’m worried”. He quietly said “ I know And I’ve known for months”. We were also lucky with an early accurate diagnosis from a neurologist and a referral to Northwestern.
    Right now, I am the only “ security blanket” he wants. He is so sweet, I am angry at myself if I get short tempered or impatient. He deserves the best of me. It will soon be six years since diagnosis. I look back at being worried about his language in the early years and I now realize that it’s lucky we can’t see the future.

      1. sometimes, many times, I try to project. I am rarely correct. We all need to remember that we are horrible at predicting the future in this disease. I would wish for all of us a type of suspension where we didnt try to project and rolled with every change like it was our daily life and not a disease. Raising children, we had no play book, why do I expect one now.? How can we go back to the days when we knew we had to roll with the punches and just expected and lived with it? Why do I feel like I need to do more now? Does our life experience make us feel that we need to be more prescient? I wish for daily acceptance with a kind heart and a gentle soul.

  10. I feel so very fortunate that you are writing to us and for us. And for you. Thank you with hugs from Texas! Ines

  11. Lew, I have been out of pocket this week and did not see your post until just now. My Dad passed away last Friday. So, Debbie has been staying temporarily in a dementia care unit at a skilled nursing center while I flew to Texas for my Dad’s memorial service.
    What struck me about your post is the fact that Jackie was writing notes for her doctor. Awhile back I was going through old papers and clearing out accumulated clutter when I came across a full page typed letter that Debbie had written for a doctor’s appointment. This particular letter was written in December 2011, a full 26 months before her probable diagnosis. Although my wife also has PPA, her letter keyed in on side effects associated with Neurontin. Eerily, these side effects closely parallel the symptoms of FTD. In her letter, Debbie listed various instances where she had experienced these same symptoms.
    At least for our wives, it does appear that they had a decent amount of self-awareness about their impending disease long before it was medically identifiable.

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