BARRY’S JOURNEY – I love you too!

FTD can be really mean

Visits with Barry have become a bit scary. He is unsteady as he walks. I bought new shoes for him, otherwise I think he would have fallen by now.

When I arrive, he is usually in a deep sleep, looking like an old man with his lips sucked in around his teeth. I noticed at lunch last week that when he shut his eyes, he seemed unable to open them. That frontotemporal dementia (FTD) is so mean — almost like it is having fun taking things away from Barry and then giving them back again. After a few minutes of his eyes shut tight, I startled him by shaking him and he finally opened his eyes.

i love you

i love you too!

His days now are spent trapped in bed because he can’t get out by himself, although he tries to sit up and cross his legs. He can’t watch TV or read. I leave him each day with classical radio on and his lights off. I always hope he will fall asleep and relax a bit.

The gang on his floor continues to change — people come, people go and people die. One of the guys watching TV likes to fill me in on what Barry has been up to. No matter how old we get, tattling is still kind of fun. Everyone seems to like Barry now that he doesn’t swear all day. The nurses say, “Hey McCool,” as we walk around the floor. Then he repeats “Hey McCool” over and over again and everyone seems to get a kick out of that!  I like to think that he is a rather popular guy at the care center.

I try to feed Barry a few times a week. When he stops chewing and swallowing because mean FTD is once again messing with his brain, I just stop feeding him. I don’t panic any more about that and it’s easier on Barry if we don’t force him to eat. The other day, he was sitting with the TV gang and I had to stop Barry from continually getting up. I almost have to sit on top of him to keep quietly watching a show. The Twins were on TV so everyone was happy. By the way Minnesota Twins, I hope you know the joy your games bring to the residents. Win or lose, they are your Number One fans.

One lady said to me (as she always does), “You must be worn out keeping track of your husband. He’s a handful!” The 100-year-old lady knows my name is Nancy, but I still can’t remember her name! One guy who visits his wife every day at the center told me he asked a lady from his church out on a date, but she said no. I said don’t give up. He said he might join a scrapbooking club. And I said good idea. Wow, I would never have imagined that I would find myself talking about dating with an 80-year-old! Sometimes I feel we are all like a big, odd family. And other times, I think I can’t take much more of this.

On this day, I put Barry back in bed, turn on the radio and say, “I love you.” I expected him to just say in his echo speech, “I love you,” — but instead he said, “I love you, too.” FTD opened up a little part of his brain for just that moment and for that I am thankful. Then Barry was back to trying to sit up and cross his legs. So it goes — for a guy with FTD.

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18 comments on “BARRY’S JOURNEY – I love you too!
  1. Those little glimmers of grace are so amazing. You can’t know when they will come or make them appear. I know you are thankful beyond words.

    • Jean Housh says:

      Your love for Barry shines through bright and clear.
      Keep moving forward. Often,our best guidance comes from those simmering in the same pot of soup. I’m studying Spanish this fall.
      Your friend in neuro-degenerative disease limbo.

  2. Beth-Ann Bloom says:

    and as always so much harder on the one who watches and remembers with loving eyes and a loving heart

  3. Helen James says:

    Hi Nancy – a beautiful story, and about where I am at with my dear husband. He can’t say “I love you” with words, but speaks with his eyes and his lovely smile, as well as kissing my hand. Yes it is heartbreaking stuff.

  4. Anne Gillespie Lewis says:

    Hi, Nancy,
    Yes, I saw the curtains parting occasionally, so to speak, in my mom when she was ill with Alzheimer’s. She would raise her eyebrows and give me that look when one of the aides did something she didn’t approve of! She could play the piano by ear and was able to play long after she had forgotten nearly everything else (including us.) Thank heavens for small favours, huh? With all good wishes to you and your family.

  5. Nancy ohmann says:

    Wow, I still have goosebumps after hearing that he said “I love you too “…
    By the way, the 100 year old woman who spoke to you is my mother… REVA is her name. Yes, Barry is quite popular …: )

  6. Kathy Newman says:

    Your post reminded me of my last visit with my college room mate who died of complications from FTD. At that time she was in a nursing home, it was by far the hardest of my visits. The person whom I had known and loved was totally gone or so it seemed. The highlight of the visit was the ever so slight smile that came to her face, along with the barely audible word “Yes”, when I explained to her table mate’s spouse that she had introduced my husband and I to each other. That was the only indication I received that she knew who I was. That tiny glimmer made the whole visit worthwhile. I hope you experience more tiny glimmers in the days to come.

  7. Lauren Mittermann says:

    Dear Nancy,

    I am so thankful to my friend, Lauren Aurelius, for sharing your blog with me. I am sorry that you have to take this journey… and admire you so very much for sharing each step with us. I have loved your books and art….and your many trips to Door county, WI. I taught at Gibraltar school, and am now retired. My children and grandchildren love your books.

    In 2001, my husband and I found out that my Mom had terminal cancer, and that my Dad, and both of my husband’s parents had Alzheimer’s. My Mom died in less than 5 months. Our remaining parents declined day by day, losing their memories of their children and grandchildren.
    So began a journey of several years of saying good-bye, of not knowing how we would care for the people we loved, of debts and bills, and so much stress. You don’t know me… but I want you to know that I am sending you a hug, and praying for you. I will be following your blog..and in spirit, walking with you.



  8. Kathy Winteregg says:

    Love that you call FTD “Mean.” I think I’ll add to that: Mean Monster. Hate what it’s doing to my husband, your husband, and all others out there. Sad what it’s doing to those of us love those afflicted. Glad that you share about it with the world. FTD brings these and so many other emotions into our lives every day.

  9. Kathy Winteregg says:

    …those of us WHO love…

  10. Bette Ashcroft says:

    Ah, Nancy.

  11. Thank you for writing this blog. Anyone who’s loved someone who has a form of dementia can relate. I appreciate your honesty.

  12. Ann Hayes says:

    Hi Nancy!
    I remember Barry from the days of the SuNaDa Pumpkin Parties. He was such a vibrant person. God has given you much strength to deal with your day to day struggles. You have remained a loyal wife and truly are blessed. Ann

  13. Mary Sue Boelter Lienke says:

    Hi Nancy: I do enjoy reading your blog….so nice that he was able to say he loves you too! My heart aches for you! I cannot imagine having to see my husband in a nursing home with FTD – as I have said before, my mother had dementia for 10 years and it was always so sad to leave her…she would watch TV but you could see that she couldn’t understand it. I would often just sit with her and she would look up and smile at me. You so want to be with them but it is also so hard to watch someone you love go thru that.
    You are an inspiration to so many…Thank you.

  14. Nancy, I had no idea you were writing about your experiences with your husband and FTD. My brother-in-law, 84 years old, also has FTD and I’ve witnessed how this condition has taken away so many things from him, including his speech. But one thing that it has given him is the incredibly devoted and loving care from my sister, his wife. I’ve witnessed a love between those two that goes beyond anything I’ve ever seen, including in any Hollywood movie. I feel so privileged to be a part of their lives, especially over this past year. As his abilities have decreased, the three of us have grown closer. I so enjoy his company. Someday I will miss him dearly. Thank you for sharing your experiences.

  15. Sandy Andert says:

    Your words bring back the many memories of my visits with my mother. It’s so special to hear the glimmers of the person before the dementia.

  16. Hey Nancy- you may remember me or not. My my and dad both died from Alzheimer’s. Had a lovely dream last night of my mom smiling so sweetly as she happily ate crackers with jelly. She used to shoot me this little girl flirty smile. I woke up happy and smiling, it’s the small wonders that she had that I miss. You seem to understand and cope with the stages he is going through. My thoughts are with you both. Go Twins.

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