BARRY’S JOURNEY

I am afraid to grow old

A few weeks ago, I wrote that Barry had stopped eating. After talking with a couple of nurses and the hospice people about this new development, I felt strong in my resolve to follow Barry’s lead: if he couldn’t swallow, he was not to be fed. He was down to 131 pounds from nearly 215 pounds when he first arrived at the care center. I felt a little giddy, I have to admit, with the thought that Barry would soon be free of this damn FTD and that I would be free of care center visits day after day!

I was beginning to let myself think about my next move! There are many empty rooms now on Barry’s floor. It seems that winter in Minnesota takes its toll on residents in the care center. This makes me think that if I ever can afford it, I would love to be somewhere warm in the winter. Do I think old age can’t find me if I slip away to Mexico or Florida? I am so afraid now of growing old. This is just one of the many things that FTD has left me with!

Before Barry got sick, I was never afraid to grow old. I wasn’t worried in the least. But now what I see each and every day at his care center makes me want to run for the hills. I want to out-run those bad hips, those stomach issues and, most of all, I want to out-run dementia for as long as I can. And I don’t want to be dependent on a walker, although I see them often out and about.

It’s ironic because as I write this post, my legs are resting up on my dad’s walker as we wait for my mom to have eye surgery! Another worry – what if I lose my eyesight? What if I can’t draw? For the past two weeks, Barry has been very still, mostly sleeping. He eats only about 10 percent of his meals. I contacted Barry’s sister so she could come to say goodbye to him. She flew in for a couple of days and at the end of the visit encouraged him to let go, just as I had.
Roller
I visit Barry with excitement, knowing that this nightmare may soon be over! But I have learned that this journey with FTD can be like a never-ending roller coaster ride. You go up and up and just when you think you are reaching the peak, it’s all downhill again. Up and down, up and down you go until you wish you could grab the imaginary roller coaster driver and beg him to let you off. Please, I can’t handle the ride any longer.

But here we go again. Barry is eating a little more and holding on tight as the goes up and up. He has some color back in his cheeks, and I can tell by looking at him that he is afraid to let go quite yet. The empty rooms will fill up again at the care center, and we will keep riding until FTD itself decides this ride is over. And when the ride is finally over, I am going to start running in a new direction for as long as I can — and not look back!

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25 comments on “BARRY’S JOURNEY
  1. Jean Spielman Housh says:

    Oh Nancy, you are strong and loved by so many.
    You and I are in a similar squeeze — with disabled spouses who need us — and aging parents who also need us.
    One Day at a Time, Sweet Jesus, that’s all I’m Asking from You.
    You are in my prayers. Jean Spielman Housh

  2. Janet Cruse says:

    Oof. Thank you for your honesty, Nancy. I can’t imagine the ride you are on. We are simpatico in the fear of growing old, but perhaps it doesn’t have to muck up our now. Remember Thea Holtan? She has two approaches to aging that I treasure, “I’m are not old, just oldER.” And, “I’ll never again be this young, so I’m making the most of it!” Maybe you’ll get some uplift from her wisdom like I do. My best wishes and regards to you all.

  3. Karen J. Carlson says:

    Blessings to you and Barry. What a difficult journey you take with my admiration and a little understanding. I was in the caretaker role for many years with my husband. Your struggles ring so true. You certainly are not alone with your physical and mental struggles though it probably feels like it. I pray Barry is released from his bondage soon.

  4. Karen J. Carlson says:

    Blessings to you and Barry. What a difficult journey you take with my admiration and a little understanding. I was in the caretaker role for many years with my husband. Your struggles ring so true. You certainly are not alone with your physical and mental struggles though it probably feels like it. I pray Barry is released from his bondage soon.

  5. Karen J. Carlson says:

    Blessings to you and Barry. What a difficult journey you take with my admiration and a little understanding. I was in the caretaker role for many years with my husband. Your struggles ring so true. You certainly are not alone with your physical and mental struggles though it probably feels like it. I pray Barry is released from his bondage soon.

  6. bev mlenar says:

    hi nancy its bev i don’t know if you remember me i used to work at hopkins gl and took care of berry. i was just speaking to a friend about the release that happens when a lengthy illness takes a life and the guilt and shame people feel about that release don’t feel that nancy just go straight into nancy mode and live life to the fullest take care your always in my thoughts

  7. Christine bekiares says:

    Always good to hear your honest sentiments. Filled Somedays with guilt and sadness, you are not alone. It helps us all to hear your voice. Thank you, Nancy.

  8. Kathy Klis says:

    Thank you Nancy for your loving and honest words. Barry is so very lucky to have you walking this journey beside him, and I am grateful you are allowing us to walk your journey with you.

    • Susan Jones says:

      I went through some of this with my mother and I did think it would be easier , but even when she quit eating and drinking it took another 6 agonizing days. The body works in mysterious ways

  9. Warren Hanson says:

    Your naked honesty is a real inspiration, Nancy. Because of what you have shared, I’m writing a song to my wife. I will record it for her to hear if, at some time ahead, I am no longer able to sing it to her. Thank you for encouraging all of us to be realistic about what life may bring.

  10. Rose says:

    I also thank you for being so honest with your feelings. It is comforting to know that I am not the only one that has these feelings about “the end” coming.

  11. Patricia Schenk says:

    Thanks for sharing your journey with us. Your words are an inspiration to all of us dealing with health issues. My sister is on a “roller coaster ride” with her husband who has stage 4-5 Parkinson’s disease and our aging mother has dementia. I enjoy seeing your pictures on Facebook every day – you have so much talent.

  12. Sheila burns says:

    I loved my mother very much. as she aged, she came very close to death many times. We tried to prepare ourselves (her family), but each time she made a miraculous recovery. I was relieved she didn’t die (her quality of life was good), but that roller coaster of emotions was very hard. She gave me her blessing to move across the country to be near my grandchildren. “I could live for years or I might die tomorrow.” It was a hard decision but I needed to leave. Your situation is so much harder. I am glad you seem to have a good support system.

  13. Sheila burns says:

    P.s. My mother lived another 5 years after I moved. My brothers saw her regularly and she had a wonderful living situation. I was in town with her when she died at age 88. I don’t feel guilty because I knew it was the right decision. I miss her. She loved me unconditionally.

  14. Ann Brown says:

    Nancy- I don’t really know you, but feel like you’re an old friend because as an Elementary teacher for 34 years, I have read your books often. Dementia has always been a fear of mine, since my dear aunt Julie battled it before her death. My mother-in-law broke her neck 15 months ago, and my husband and I are well acquainted with the life and scenes you describe in the care center. I admire the dedication and love you’ve shown your Barry- it isn’t easy under these circumstances. Bless you!

  15. Pam schultz says:

    Once again you touch all of us with your honesty. Soon you can run with the wind, sail with the seas and only climb mountains if you want to

  16. barb short says:

    Be afraid! Be very afraid!

  17. Nancy Paxson says:

    Hang in there! It will eventually be easier. I have had some of those same fears as I spent daily visits to my mom’s care center. A year ago she went into hospice care and only lasted a short time there. I know she was relieved to finally let go as my sister and I sang to her and reassured her that we would miss her, but would be fine and take care of each other. What a relief when it was over, and we could remember the good times.

    Hang in there!

  18. Cathy says:

    I’ve been on a similar ride. Oh, I wish I could have shared the ups and downs with people, the beautiful way that you can.

  19. Mary Beckman Woodward says:

    Another great writing piece. The kids, grandkids and I have moved on. Harry’s life has been frozen the last 5 of his 8 year illness. There have been numerous come down to the hospital / this is his last nite. Well , I was getting sicker with my autoimmune, my youngest had and won her little cancer battle,y good friend died, numerous other friends got ill, moved away or died. Harry was not aware of any of this. We got experpert therapy because we had to move on. We could no longer make Harry the center of our lives. Our kids, grandgirls and I deserved to live in the present. It would be seriously wrong to deprive everyone of joy and truly living in the present. It was selfish of me to be so center red on Harry that I missed the kids, grandgirls or friends joys, sorrows, celebrations. With therapy we learned to make priorities. Harry’s in the best nursing home. He has better food than we do. He doesn’t seem to notice we’re there and he no longer interacts at all. In the meantime the world, my kids, grandgirls , my friends and I all have a world which needs us to be present. With help, we are in a different place. We still care, but there is nothing more we can do. Our family and friends have needs we can no longer ignore.i have to give the message to my family , friends and myself- YES I CARE. YOU ARE IMPORTANT TO ME. YES, I HAVE TIME FOR YOU AND YES I AM NOW LIVING IN THE PRESENT. The roller coaster of control is over. We have loved and done everything we could for Harry. We now are giving the message to all those we can about -and to ourselves- yes you are available. You are important. And your needs are not going to be
    On the backburner. Again another deeply honest chapter of what it’s like to be on hold permanently. Thank you for your honesty Nancy. Love, Mary

  20. Ben Kreilkamp says:

    Hi Nancy, I just got back from a visit to Virginia to my grandchild Lucinda. I got to read her your Smile a Lot which I got at your holiday sale in December. Thanks for the sunny story, she loved it.

  21. Ellie Lucas says:

    Hope you keep looking ahead. One day much of this misery will be behind you. You’ve been patient and understanding. I admire your strength, devotion and pure honesty.

  22. Laura Bates says:

    Stay strong. Be well. Your honest words help others.

  23. claudine coughlin says:

    Hi Nancy, Thanks for your update! I can understand the long road for Barry to go home. It is always hard for we loved ones to watch this long journey! I hope and pray that Barry’s journey will be a short one and you can move one with your life. Take care of yourself. greeting to your mom and dad!
    Love, Claudine

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