BARRY’S JOURNEY No. 17

Happy anniversary

Not surprising — I forgot our anniversary this year. It slipped my mind as I spent the morning following Barry around his care center.

We were married on June 30, 1979. The ceremony was held at the church I grew up in to satisfy my mom. After, we had a huge picnic and square dance at my parent’s hobby farm in Jordan, Minn. The weather was perfect that day as I threw my bouquet from the top of the open barn door. Dogs ran wild and a couple of toddlers played in the mud by the water trough. Our honeymoon was a trip around northern Wisconsin and Minnesota to fish. But we had no luck, so Barry got the idea to head up to a fishing camp in Canada, where it turned out that I was the only woman!

We settled down in south Minneapolis, establishing our careers and starting our family. We had an awesome life filled with family and friends. This is something I have to remind myself about each and every day. Our life as a couple has changed so much due to stupid frontotemporal dementia (FTD). It’s a lonely and depressing life for me if I let my mind go there — which I try not to. Since Barry’s diagnosis more than two years ago, I have felt relieved and comforted that Barry has not seemed to register this huge, depressing turn of events in his life — at least up until now.

spaceheadMomentary self-awareness

The day of our 35th he said, “My life is a disaster.” I asked why he felt that way and he said, “I can’t figure anything out because of this elementary dementia.” He was mixed up about what he has but certainly he was aware of his plight.

When Barry was first diagnosed, his doctor said the good news is that Barry will not be aware he has FTD. So this turn in his thinking left me confused and worried about how to help him feel better. I wondered if my recent trip to California made him feel sad and alone. I try to bring him a treat or a magazine each time I visit but nothing seems to interest him. I guess all I can do is wait for this phase to pass like the others before.

There was a time when I thought he would die of a blueberry overdose! Now he never eats blueberries. A few days ago as we were walking the hall, I patted his back. He stopped, looked me in the eye and said, “Are you trying to lift my spirits?” For that moment he sounded just like a regular guy — not someone with FTD. He was clear and lucid.

We talked a little bit about how great it was to have our kids and how he ran a successful business for many years. It was a real conversation! I looked forward to the next visit; maybe we could talk over things again. But when I arrived the next day, I found him wandering the halls with his pants around his ankles.

The old Barry was gone again!

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15 comments on “BARRY’S JOURNEY No. 17
  1. Ann Hustad says:

    Wow what a journey this has been Nancy! I’m sure thinking about you. I met your pal our neighbor at the cabin Nancy Jacobson!! Maybe you’ll be up this summer she said!! I’d love that!!

  2. Nina Crittenden says:

    You are an amazing lady, Nancy! Thinking of you xoxo

  3. This is such a tough journey and you are doing it so bravely with loving kindness and realism……It does not last forever. That’s the good news and the bad news. I think you will be able to inspire many many people, Nancy……

  4. Amy M. Johnson says:

    As you know, I am walking the same road with my mom. I’m glad you were able to have a conversation the other day, that is really special. We can treasure and save those times when they happen. My thoughts are with you every step of the way.

  5. Carrie Hartman says:

    Hi Nancy,
    It isn’t easy to have to be as strong as you are required to be through this season of life. Blessings to you each day. Someone told me once during some truly awful times, that I needed to ask God only for enough light for my next step. May you always have enough light to get through each day.

    Let me know if you would like to meet for lunch or coffee (on me 🙂

    Carrie Hartman

  6. Maryfran Heitzman says:

    I work at the Wealshire of Bloomington–an Alzheimers/Dementia Facility. We are starting a support group for anyone dealing with these issues no matter where your loved one lives. Let me know if you are interested in add’l info.

  7. Susan Lund says:

    You are amazing my dear friend.

  8. Patty flakne says:

    You are an amazing lady. Thank you for sharing this story.

  9. Chris says:

    This has moved me to tears. I am so proud of you, Nancy and how you are handling these super difficult unbelievable things. Poor guy. It is literally heart breaking. Life is so bizarre! Love you.

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