BARRY’S JOURNEY No. 11

Barry at the home

Barry at the home

First days in assisted living

I am writing this during our latest blizzard here in Minnesota. The roads were so bad last night that I couldn’t get out to check on Barry at his new assisted living place. I felt guilty and worried. I thought it all would be a breeze once he moved in. But it is much harder
than I thought it would be.

Friends and family helped with the move. We set up Barry’s room that we now call his bachelor pad! I got him a TV and brought a comfy chair from home. My high school friend gave us a small table with two chairs where Barry can eat if he’d like. The bachelor pad is looking good — but it’s not home and Barry knows it!

On his first day, I stayed to have dinner with him down in the dinning room. I found out you need to plan ahead to nab a place in the elevator. There is a long line because everyone is excited for dinner!

Hi, I’m the new guy

We sat with a nice guy who told us about his life — but kept repeating it over and over until Barry said, “You already told us that already!” I told Barry to be polite! Then suddenly Barry got up and walked around the dinning room introducing himself to
everyone saying, “Hi, I’m the new guy!” For a minute, I saw the old Barry I knew and loved.

Since then Barry has not mixed much with the others on his floor, but I have! Each evening I say, “Let’s go out and visit!” So we head to the TV area where the same crew sits each night. Sometimes we walk the tunnels between all the buildings to get some exercise.

Why I still worry

Barry continues to look forward to his days at the adult daycare center (aka the club). For now, the county is paying for three days a week. Whenever I call him, he answers by saying he is going to the club — even if it is not one of his scheduled days. He just loves
that place!

So why do I worry? Once he has left his floor and got lost in the tunnels. Now he wears a security bracelet that sets off an alarm if he tries to leave the floor. More freedom lost.

Then in his first week, I picked him up to go to church. All was going well until he started to say “F* you” to me during the sermon. Couldn’t he have done that during the hymn? So we moved into the fellowship hall and ate donuts. Was he angry because of all the changes in his life? I don’t know, but I’m not sure I’m up for trying church again. Yet each week he asks to go. Maybe this Sunday, we will try again.

Love in his own words

On this snowy day, I wondered if Barry was able to get to the club. When my driveway and street were finally plowed, I drove over to the club to check on him. There he was drinking coffee in his recliner. When I walked in he said, “I’m having a good day!” All was okay and I could return home to finish preparing my taxes. Just as I was leaving, his social worker gave me a love letter that Barry had tried to write. He has difficulty writing now so an assistant wrote down what he wanted to say:

Nancy Carlson I Love You. Thank you for being yourself. I like growing old with you. I like raising our children. I love you with all my heart. — Barry McCool.

Putting my husband of more than 30 years in assisted living is the hardest thing I have ever done in my life. I can’t decide if his letter makes me feel worse or better. But I am glad to have it and share with our three kids.

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25 comments on “BARRY’S JOURNEY No. 11
  1. Mary Wesenberg says:

    Nancy,
    Your strength is amazing, Barry’s letter to you brought me to tears!

  2. Jean Mazzoleni says:

    Maybe through the letter he is communicating to you that he understands all the difficult decisions you have had to make on his behalf.
    Hugs to you,
    Jean M

  3. Tim Moodie says:

    Okay, now you did it, you made me cry and I haven’t cried in a long time. Best to you and Barry.

  4. gwen hauser says:

    It helps to read how you are telling Barry’s experience and your experience with dementia. The sadness and humor of Barry saying F…in church…followed a day or 2 later, by writing you a touching love letter… really tells the story of the roller coaster ride that you on with Barry.
    Thank you, Gwen

  5. Nancy Carroll says:

    Nancy, your post brought a tear to my eye. Y
    ou are an incredibly strong woman, and I think your kids must be in awe of you! Thanks for sharing your journey. I’ll keep you in my prayers!

  6. Nina Crittenden says:

    Thank you for sharing this experience with us, Nancy, I can only imagine how hard it must be. xoxo

  7. Stacy Rogers says:

    Hi Nancy, I learned of your blog through a mutual friend, Dave Geister. I have only had the chance to read a couple entries but this one hit home. 2 weeks ago today, my mother lost her battle with Dementia/Alzheimer’s and I still remember that tough decision to move her into an assisted living facility in May 2012. Dad cared for her at home as long as he could but it was getting hard on both of them; she wasn’t sleeping so neither was he, she was having falls, etc. My dad knew it was the right thing to do but said it was still the hardest decision of his life. For several months she had gone to a daycare program that she really liked (a couple days a week) so it made sense to move her into the same facility full time.

    We cannot express how wonderful the staff was. It wasn’t long before Mom wasn’t walking any longer and needed help eating. So Dad went over 6 mornings a week and my sister and I went over on Sundays. The staff and other residents became family to us and I miss seeing them every week! This is a hard journey, but finding a good facility and support network is so important. I imagine that this blog really helps you work through things as well. Thank you for sharing your journey!

  8. Beth-Ann says:

    The real Barry wrote to you-it is a special gift!

  9. Maureen Carney says:

    Thank you for having the courage to share your personal story, Nancy! Your strength is an example we can all learn from. The grace and dignity you exude in your writings is a love story that will be cherished. I have always been inspired by you and have you in my prayers. XO to you and your family!

  10. You and Barry are treasures in our world. Absolute treasures.

  11. Jean Spielman Housh says:

    Barry’s letter will hold you through many a tough day. He loves you and your kids. Hold on to that forever. Thank you for your honesty.

  12. Pat Bauer says:

    Dave and I think of you every day and are continually amazed at your strength and outlook. Take care.

  13. Judy Backlund says:

    I have been following your journey with Barry. It sounds like Barry is being well taken care of in his new surroundings and at the adult day care. That is a blessing in itself. Hopefully, over time, you will have more of a routine in your lives so you can accomplish whatever you need to do and still know that Barry is content (happy) and in good hands. I am sure that the “letting go” of a lot of the responsibilities is hard. The letter was very touching. Take care.

  14. Gail Asher says:

    I don’t know how I got on this thread but I did and I have to say I am in awe of what you are doing. You are inspirational in an excruciatingly difficult situation. Keep doing what you are doing and always remember how truly amazing you are!

  15. Maryanne says:

    I think it’s a gift as well…from not only Barry, but from God, too. Barry knows how patient and faithful you are to him. You’re the best wife, advocate, and friend he could ever have. And in his heart, he knows that, Nancy.

  16. Kathy Hurd says:

    Nancy,
    I so look forward to reading your post. I am able to feel such deep love from both you and now Barry. Whether you know it or not you are reminding so many of us the importance of never taking anything for granted, to live each day like it were your last. That my friend is a gift!!

    You are one of my hero’s. Bless you!

  17. Claudine Coughlin says:

    Hi Nancy, I read your blog and can empathize with what you are going through. Its so hard to understand this horrible disease and to have the person they use to be with you and then so quickly things change and there gone again. I want you to know that you are in my thoughts and prayers and you can give me a call anytime. I am a good listener! Love, Claudine

  18. Shannon Smead Samuels says:

    Nancy, I just want to say I am sorry you are having to take this journey…but bless your heart, and thank you so much for sharing it. No doubt a number of us who are reading your blogs will also be on this path one day, either yours or Barry’s, and what a gift you are (both) giving us. In my prayers. xo

  19. Ann Hustad says:

    Hey nance! I’m here with cousin Lucia and we both cried for you and Barry. We send love and support to you! You have a lot of strength!

  20. Luanne Lescarbeau says:

    I enjoy your entries so much, and am happy that Barry is in such a good place. My son, Mike, remembers him as a wonderful man, and I can just picture the “old” Barry going around introducing himself as the “new guy.” This, the most horrible of winters, has made the roads so bad that no one should feel guilty about staying home when the Troopers tell us to. You don’t want to add to the plates you already have spinning in the air by having someone sideswipe you on the road, or worse!! In some way, Barry will understand if you can’t get there, and remember that you have to take care of yourself. Even though we don’t know each other, I hope you can feel the hug I am sending you. With love, Luanne Lescarbeau

  21. Jim and Kay Griggs says:

    Nancy,
    You touch us with your poignant stories of Barry’s journey. You are brave beyond words and we love you.
    Aunt Kay and Uncle Jim

  22. Jandonahue says:

    Dear Nancy, I’m amazed at u both. It may not be easy now, but god will bless and take care.
    Thinking of u. Jan

  23. Carol Hankel says:

    Nancy,
    Thank you for sharing your painful journey with all of us. You are amazing. Barry reminds me of a willful child – someone you love fiercely and at the same time want to protect from the ravages of the world. Yet one cannot. You truly must put “one foot in front of the other” and keep moving. God bless you and all your family through these hard times.
    Carol H.

  24. Betsy Becker says:

    I will pray for you.

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