BARRY’S 8OURNEY No. 27

What is Barry thinking?

I can’t figure out how to feel about Barry and his life at the care center. When he first got there, I was relieved that he had somewhere to go after being kicked out of his assisted living place in Edina. But it took me a while to get used to going to a care center (aka nursing home) each day.

Cheers to those brave enough to visit

A care center is a reminder of just where you do not want to end up. Going to see Barry is not much fun. This is why I so appreciate the people who get up their courage to visit Barry. It is an uncomfortable place to be and a visit with Barry usually yields no rewards at all. There is no conversation that really means anything. And Barry is thin, usually a little smelly and has that unnerving frontotemporal dementia (FTD) stare that can be a bit scary.

I have put a little book in his room where people who visit can write something. I noticed Barry’s old pal Louie stoppped by recently. Louie wrote in the book that the two talked about their dogs (who were sisters) that they each raised in the early 1970s. He signed off, “I Love You Barry.” It made me want to cry to think someone still cared so much about Barry.

I feel like a mother bear trying to hold off my anger and sadness at just how few visitors Barry has these days. I don’t blame people — as I said, this is not a pleasant experience for anyone. But thank you to those who have let go of their own discomfort and stopped by to say hello. I don’t know If Barry feels any pleasure when an old friend visits, but it sure means the world to me.

Stuck in a care center

I wonder each time I visit what it must be like for Barry to be stuck at the care center. Is he aware of where he is? Does he know his world is confined to four walls and one small window? Is there any pleasure in his day? I wonder if he enjoys mealtime. He has to be fed now, and I wonder if it is frustrating for him. What if he doesn’t like canned peas, and we are stuffing them in his mouth. (I have to say that he ate all my cooking for years without complaint! This was really a feat because I made many pretty bad meals during our marriage.) When an old pal comes to visit is he happy to see them? He can’t tell me if anyone has visited. Despite all this, Barry has never asked to leave and come home.

What does he think about all day while lying in his bed? Does he have the urge to get out of bed? He can’t get up now without help. Is he aware that he irritates many of the other patients with his constant repetition of words and sentences? Or is the non-conformist part of Barry trying to irritate everyone? Is it his one way to protest his predicament?
sleep
The biggest question I have is about how he may feel when our granddaughters, ages almost 3 and almost 1, come to visit. Is he happy or sad? One day a few weeks ago, Barry’s eyes filled with tears when the girls came in. Were they tears of sadness or happiness, or was something irritating his eye? He can’t tell us and it breaks my heart. I have no idea what he is thinking. But then maybe he isn’t thinking at all anymore.I wonder if Barry likes taking the pills that help him relax. I wonder if he looks forward to that high — or has he lost that feeling as well.

I have never been at the center late at night. Sometimes when I am at home watching TV or getting ready for bed, I try to imagination what Barry must think as he is put to bed by an aide or nurse. Does he still snore? Does he dream, and if he does, are they nightmares? I hope that whatever drug they give him at night makes him sleep like a baby.

We are now beginning our second year in the care center. Many times I don’t want to go there — but I do. I have to admit that I kind of look forward to being out of town on school visits, even though I get anxious to see him after a few days away speaking. I just can’t stand the thought of him being all alone.

At each visit, I still hope for some sign of joy from Barry. If there is no joy in his life anymore and he will never get better, what should I do? I just wish he could tell me. I can only hope that one day he will!

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16 comments on “BARRY’S 8OURNEY No. 27
  1. Oh, Nancy… this may be one of your saddest and most honest posts yet. Keeping you, Barry, and your whole family in my prayers.

    • Paulette Christianson says:

      Nancy, I feel your feeling so as I am headed that direction and am not there yet. I like your honesty and can so know all and some of the same. God bless the both of you.

      Thank you for sharing as it is a comfort to know I’m not alone

  2. Sally I. says:

    Nancy, I read all of these posts, and I never met Barry,but as you know my dad had Parkinson’s and the latter years were hard, even though he was much older than Barry is. It must feel like you and your family have been cheated out of so much, but these posts are so honest and beautiful in a way and will certainly help others with loved ones who have debilitating illnesses. The drawing here of Barry in his bed, he’s in the woods, literally and figuratively, and you’re not sure you are reaching him, but you are doing so much, as much as one person can. I like to think that he knows your grandchildren, or feels a sense of family when he sees them. Thanks for your truthfulness and for writing words that Barry can’t say. Hope to see you soon.

  3. Marshall says:

    i admire your courage but even more than that, your honesty! XX

  4. Maryanne says:

    In Heaven, we’ll all be free to say everything! Before Matt passed away, he told me so. I think by that time, he’s already had a glimpse of it–just a day or so before he left us. We continue putting one foot in front of the other as we slouch toward Heaven!

  5. Pat Bauer says:

    Your post brought tears to my eyes. Just imagining what both you and Barry are going through is so painful. Your comment about how it makes you feel good when Barry’s friends visit him reminded me of something that a dear friend once said. “If I die, I don’t care if you come to my funeral. But if my wife dies, you all better be there.” You deserve that comfort, even if Barry isn’t cognizant of the visit. But I suspect, that on some level, he is at least a little bit aware. Hang in there! Much love . . .

    • Melinda Batz says:

      Very well said. My mom’s friends stopped coming to see her in the care facility–it was just too hard, and I understood because it WAS hard. And not knowing what she was feeling killed me. Thanks for being willing to (again) share your experiences.

  6. JoAnn Griffin says:

    Nancy,
    I admire you so much. You are so strong in the face of this difficult time in your lives. I hope you can find some peace in your visits with Barry. You are in my thoughts and prayers. Take care.

  7. Karen says:

    What a mess. My friend has a similar problem with her father. He doesn’t know her, but she can’t stay away do very long.
    The anxiety must be ten-fold knowing it’s your husband.
    I love that you added a guest book to Barry’s room.
    Thank you for sharing with all of us.

  8. gladys mercier says:

    Nannnette…
    When you visit, bring you favorite music and play it. It will help you get through it. My mother loved the tulips in her garden. Though she couldnt walk then, she loved to just sit in it… I hope the care center can get Barry into the garden… If it doesn’t help him, it will help you… The biggest joy mom had was when her grand niece brought her 2 daughters to visit.. I was amazed at how good the little girls were…. It is a terrible disease no matter what age… The weather is better so maybe you can go outside… with the help of an aide…. Spring is around the corner and you will feel better with the longer days.. Keep looking up! hugs g.

  9. Elizabeth says:

    you are not visiting Barry anymore, you are visiting what he used to be and your idea of him but really, Barry is gone.

  10. Shannon Samuels says:

    Oh, Nancy…what a trial, for both of you. As I (yes, eagerly) read each of your posts as they arrive in my in-box, I take in all that you write and think, this could be you, this will be you or someone else you know and care for. Unfortunately for you and Barry, you are probably the first in our generation, in our particular “world”. I know you don’t want to be there, you don’t want your life partner, the father of your children, to be there. It sucks! Not a very genteel way of putting it, but I imagine that is how it feels most of the time!
    Might I suggest you choose to believe Barry’s tears at the sight of his darling grandchildren are tears of joy? That he may not remember exactly the kind folks who come to see him, but he absorbs some sense of warmth, kindness and caring? He has good days and bad days no doubt…try to focus on the good. And thank you, again, for so honestly and openly sharing this journey. Hugs.

  11. Karen Jones says:

    Nancy, your honesty and bravery are inspiring to me. Your raw and eloquent words bring tears to my eyes; tears of recognition of how painful it is to love and to be human some days. Thank you!

  12. Judy Peterson says:

    It was hard to read your thoughts without trying to put myself in Barry’s place- of course that is not possible. There are so many who have gone through such experiences and families must feel so alone at these times. Thank you for being so open- sharing your thoughts so boldly. I am praying for you , for Barry and for your family.

  13. Judy Gozola says:

    Nancy,

    I admire you so much for your love, dedication and compassion for Barry. You write so openly sharing basic facts, feelings and most of all what we all think and feel when we visit or talk to someone in a care center. It is very hard to visit a loved one, that is physically here, but can’t express themselves back to you and share their thoughts and emotions. You are quite a woman being strong (at least on the outside), but yet tender but yet hating the disease, but loving the man and giving of yourself. It is amazing how you can physically and emotionally still look out for Barry wondering about his care and if they are doing it right or if it is enough. I am touched by your continuous visits and love so that even if on the off chance that he can recognize, understand or feel it. You are quite a woman. Thank you for sharing you honest feelings and love, because I believe you are touching a lot of people and changing their lives. I will keep you in my prayers. Hugs, Judy

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