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Trapped inside.

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I am going out of my mind being trapped inside by a merciless sinus infection.

I joke about it, but it has really made me think about what my mother has been through in the eighteen years since a stroke left her disabled. Although there were many years when we could take her out for activities, she was largely homebound. When Alzheimer’s showed up in 2001, it got worse. She’s been in a nursing home for the last three years and I don’t know how she’s coped with it, except that she has.

These days, she doesn’t talk. The only thing I’ve gotten out of her is a “yes” on three occasions when I repeatedly asked if she was happy.

What is she thinking? I really wonder that. With so many endless hours in bed or in her wheelchair,  what is she thinking? Until the last six months, there were moments when I suspected there was more happening inside her mind than she could convey, and in one of her more lucid moments, I asked her about it. I said, “Is there more going on inside your head than we think?” “Yes,” she said. I asked her what, but she didn’t answer. I knew from the way she looked at me that she was right there with me, so I shared something with her that I had wanted to tell her for a long time. I knew she understood me because she reached her arm to me and drew me to her. She hugged me tight. I knew she’d heard and understood everything I’d said, yet she couldn’t acknowledge it verbally.

Day after day after day after day. Hour after hour after hour after hour. She is there, in the same place, locked in a body that can’t walk or stand or eat or communicate. I do think she means it when she tells me she is happy. I just wonder how she finds that happiness. I know there is some sort of profound learning that has happened to help her to cope with her disabilities and continue to live and find joy. I want to know what she’s learned, how she’s learned it.

A couple of years ago, there was an episode of Grey’s Anatomy where Meredith’s mother “woke up” out of her Alzheimer’s and Meredith could have clear, the deep conversations that she needed to have. The clarity didn’t last long, but there was that window. There isn’t much documentation to back up that kind of recovery, but the fantasy is powerful. I wish that I could have a day of clarity with Mom. Or even an hour.

I would tell her how much I love her. How proud I am of her courage. I’d hold her. And love her.

Which is really what I do now.

As I think about all the things that I’d love to tell my mom, it hits me that I really don’t have anything more to say. I’d just like to hear back from her. I miss singing with her. I miss her sense of humor. I miss the sound of her voice. I miss her advice.

But everything is trapped inside.

3 Comments
  1. If it’s any consolation, my Dad was “trapped” in his body 2 1/2 years from a stroke. He died May 9th this year. His mind was 100% and he could talk somewhat until the minute he died. I spent 3 weeks round the clock before he passed, and found out this little secret of his: you aren’t trapped in there, and you’re not alone. He “traveled” to … Read Moreadventures past, saw loves lost, and loved when we came to see him. Dad said we think it is awful, but to them it’s just what is. He was ready for the next phase, he had time to say goodbye. Not all of us get that chance. Be strong for her, she was for you! And Fawn, no matter what, SING! She’ll hear you.

  2. Ann Barrow Huebsch
    I went and read your blog…I have so many friends with this going on in their lives and my heart goes out to you & your mom.

    Sandy Streit
    Hi there Fawn-I used to tell my Mom that I knew the roads to communicate with others were somehow blocked, but that I could tell in her eyes there was still a lot happening. I felt that way right until her last breath. She (your mom) is lucky to have your love and attention.

    Ginny Urban Senzon
    Hope you are now well. Sorry about mom. I think we were in Ketchacan a year ago today. Be well

    Bev Brooks Sutton
    I’m with ya Fawn-they would do it for us!

    Lisa Holgate Taylor
    If it’s any consolation, my Dad was “trapped” in his body 2 1/2 years from a stroke. He died May 9th this year. His mind was 100% and he could talk somewhat until the minute he died. I spent 3 weeks round the clock before he passed, and found out this little secret of his: you aren’t trapped in there, and you’re not alone. He “traveled” to … Read Moreadventures past, saw loves lost, and loved when we came to see him. Dad said we think it is awful, but to them it’s just what is. He was ready for the next phase, he had time to say goodbye. Not all of us get that chance. Be strong for her, she was for you! And Fawn, no matter what, SING! She’ll hear you.

    Luci Sheehan
    I agree about singing and talking. The last thing that goes is hearing. My mom waited for me to get to her before she died and listened to my voice on the phone as I drove through the night to Boston to see her. She died an hour after I got there.

    Laura Terry
    Losing both of my parents this year has been very difficult for me
    My father passed in November and my Mother in December.
    My Mother had Alzheimer’s and went into a nursing home in 2006.
    My Father disease was diagnosed in July and he passed in November.
    My father was a very proud and strong man no medication of any kind for 79 years.I watched my Mother go more and more into herself as time went on, so I know how you feel…. Read More
    Both of my parents decide when they were ready to move on. I feel there sprit here with me all the time.
    I feel they are in heaven now strong, healthy, and happy and in love. Keep the faith.

    Bev Brooks Sutton
    What Luci said is correct-they always seem to hold on until they know certain people are there-my Dad held on for my sister & within hours after she left to go back home to Tenn he passed. DAMN that disease!!

    Kathy Green Casey
    Oh, Fawn. Read your blog about your Mom. Lov u and can tell how much u lov her. Hold tight, sweetie. She knows you’re there.

    Deborah Shuck
    I sat with my Father day and night for almost a week until my Mother and I could do it no longer. The doctor told us that we had to go home, take a shower and get some rest that my Father was not going to die right away. We weren’t away for an hour and he died. I think he knew that it would be just too hard on us and he waited until we were away to… Read More die. I was SO devastated because I had always promised him that I would take care of them and be there for them. I felt as though I had let him down. Now I have made peace with it but it is ten years later.

    Fawn Germer
    You all have really touched my heart today. What a bunch of great daughters. I really appreciate all this feedback.

    Susan Morrill
    Some days you make me smile, some days you make me cry… today you touched me. Love you.

    Denise Doyle Watson
    Fawn, darling, my thoughts and prayers are with you and yours. Ours is not at destination but the journey.

    Sarah Knupke Varga
    That was so beautifully written. Thank you for sharing.

    Kathy Green Casey
    So moved me, Fawn. First blog I ever typed on in my life. I don’t what’s better? Losing them slo or losing them quick. We just kno losing them period is horrific.

    Jayne Bray
    Sis,you know my story…and you know how much Meem appreciated your visits, and you know how much she knew she was loved. Your mom has no doubt, and I agree with the person who said “keep singing.” I did that with Meem (when I wasn’t making jokes) and she’d always smile. I also agree with the person who said they travel – Meem was in a lake in … Read MoreConnecticut with her cousin and loved it! You’re doing all the right things and your mom loves you for it, never fear. Another “Sainted Daughter.” Love you.

  3. What you wrote about your mother, my wife- is SUPER EXCELLENT. I re-read the article three (3) times. This was about my Betty and your Betty. Fawn, I can not thank you enough for what you wrote.
    I must print it and re read daily.
    LOVE Dad

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