Time To Make The Move, Part I: A Daughter’s Journal

by Beth Whitman

The day had arrived. Mom was going into the Alzheimer’s Care Facility. The van was coming at 11 am, so at 9 I had dressed Mom and transferred her into her wheelchair. She was ready to go. Amy and I wheeled her out into the morning sun in the front yard. Dad joined us, and Peter came from down the road to help out as well. We brought out drinks and snacks and had a little party while we waited for the van.

I was nervous, as was everyone else. But Mom was excited. She was outdoors, happily absorbing the smell of freshly cut grass, waving at the cars going by. It was the first time she’d been outside in almost two months. She was all dressed up. And she was ready to go.

Fact is, Mom had been ready for the past three weeks. She hadn’t been able to stand up, her feet were swollen, she hadn’t been getting dressed any more, and it had become extremely difficult to change her because I’m simply not able to manage her weight by myself. She always wants to go somewhere, but the best she can do after hours of trying is just to slide herself onto the chair next to the bed. Then she won’t move back, so she sleeps all night in the chair or she wets the chair and I have to call someone to help hoist her back into the bed by maneuvering a sheet under her. And all the while she is protesting, “No, no, no, no, no….  NO, NO, NO, NO, NO!!!!” Her protests escalate loudly until we have her settled and all the wet clothes removed.

But then, suddenly calm, she looks up at me. “Thank you,” she smiles.

The day before we were moving her to the facility in Glenridge, I sat next to her on the bed after one of these sessions, and she leaned against me quietly, waving her hand in front of her. “You know . . . you know . . . I’m so . . . I’m so . . . sorry . . . for you . . . and . . . and . . . that other one . . . .” Her hand motioned toward the other room where my father was sitting.

She was apologizing to me for being such a burden! My heart was breaking.

Mom had required 24-hour monitoring for four or five months at this point. Whenever I was not by her side, I would carry a little video monitor, so if she were trying to stand up or move around, I could go to help her. I shared this duty with Amy, her full-time caretaker who lived upstairs — one of us was always watching. For the past couple of months I’ve found it safest to simply sleep next to Mom, so that whenever she would wake in the middle of the night and want to go somewhere, I could coax her back to sleep, stroking her hair or rubbing her back.

About three months before, she and Dad stopped sleeping in the same bed. Dad was exhausted because she would wake up distressed or simply restless, and Dad, raw from not getting any sleep, would irritably demand, “Go back to sleep, Marianne!”

But that wasn’t effective. So I would kick Dad out of the room, have him go sleep in the bed in the living room, and I would lie down next to Mom and gently urge her back to sleep. It became a ritual: Dad and I would wait to see where Mom ended up at the end of the evening, and then we would decide, accordingly, where each of us was going to sleep.

It often felt as though I were taking care of an infant. There were moments of great tenderness, where Mom would gently stroke my hand, and her hand would follow the line of my arm, as if exploring a new world. We had a language, Mom and I, barely intelligible to most, but I knew what she was trying to communicate. Something she was curious about, something she wanted, something that upset her. And, as always, she would look into my eyes and say (though it became increasingly unintelligible): “You’re wonderful.”

But now Mom hadn’t left her room for three weeks. Life was reduced to feeding and cleaning up messes. But it was ten times more difficult than with a baby, because Mom was at least ten times bigger.

No one was happy. It was time.

Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.

17 Responses to “Time To Make The Move, Part I: A Daughter’s Journal”

  1. kat says:

    Wow. This is so helpful to those of us who are new to this horrid disease. We often wonder if its time yet…

  2. Gregory Blanton says:

    This is heartbreaking. My mother also suffers from this HORRIBLE disease! I dread the day I have to make this decision for her. She still is able to communicate and care for herself as far as dressing and brushing her teeth and eating. My father helps her with bathing right now. Dad is becoming wore down health wise himself so he will not be able to carry on much further with her. She has become much more confused as to who he and I are more each day. My heart and prayers go out to you! She knows you are doing what is best i her heart of hearts and is grateful for all you have done and will continue to do!

  3. Denise Arencibia says:

    Beth ~ I’m so happy we have become friends through this page. Your story ~ my sweet friend ~ is also my story and your words have brought me to tears. When I read what you are going through right now it takes me back to the time when I was the woman you are today. The daughter you are today. And although it was probably the hardest job I’ve ever had to endure, it was also the most rewarding and the most selfless thing I’ve ever had to endure. To have one more day, as the song goes, would leave me wishing for one more day to follow. Treasure every moment my sweet friend. I truly believe that behind those eyes is a woman who truly knows what you are sacrificing for her. She thanks you in a silent way that only you understand with her. I remember those moments as well. May The Lord smile down on you and say Beth ~ you have done my will. I LOVE YOU <3

  4. dee jordan says:

    this hit home ……right now , today . bless you all .

  5. Dee Puckett says:

    I am going through this with my husband .. Hardest thing in the world to look at your spouse an see a baby or someone you don’t know .. I still have him at home but deep in my heart I know the time will come that I can’t look after him anymore. It gets so hard to do and to know it’s not him , he rubs his hair out , an repeats the same thing over an over .. Forgets he has eat I could go on an on but any body that has gone through this knows what I am talking about.. I need Prayers Bad !!

  6. Nina Greenberg says:

    Oh Beth–I read this with the tears just rolling down my face.I have not had personally go through this experience with my father—I have been involved with many families that have (as a nurse).I know your journey has been exhausting,emotional and …this word doesn’t sound right but rewarding.What I mean by that is your mother has been able to be at home with you,your dad and Amy for all this time received the best care possible.now is the time for the place of her care to change.Now is the time for you and your dad to sleep and breathe a little easier.I wish I could share a huge hug with you my friend.

  7. Stephen Wallace says:

    This is the most moving and beautiful story that I have read in years, Beth. You are an incredible human being, deep and real and present. I know I have not said it to you enough or with the level of true understanding of what you do and how you are with your mom and your dad. When I think of gratitude and grace I think of you and that you are in the world making it real and honest and loving. Thank you for being such a wonderful teacher on opening the heart.

  8. Julie B says:

    My Dear Beth, thank you for everything. for being so loving with your mother and father, for being present, for caring with such beautiful tenderness, for your ability to listen, interpret and share. All so deeply. So beautifully. I send my love.

  9. Soraya Cosme-Durán says:

    Beth, as I read your journal, my heart is one with you. ~ We live in Puerto Rico. I am the eldest of three: 2 daughters (50, 48) and a son (45). We moved our mother Olga (74) to a home facility on Nov. 2. 2012, couple of weeks before you did. Everything you shared we have lived step by step, tear by tear. Alzheimer’s is a very painful school. All in God’s will. The night before the moving, I slept with her and made a beautiful dinner to celebrate and give thanks for the last night at her apartment. I was so moved when I read the same words your mother told you, my mom said to me, but in Spanish. With difficulty, in few words, she expressed her gratitude for everything we were doing for her. Thanks for sharing your story. We are also very hands on with everything regarding her well being. So, we are currently dealing with the Haldol situation, while monitoring all her other medical conditions. Good days, bad days, more or less days, we learn to live one day at a time….Constantly praying, enduring, and treasuring every moment we share with her. Be there, read Psalms to her, sing in her ear, kiss her many times, make her laugh, stroke her head and hold her hand all the way…Never alone.
    Love and blessings to all. Soraya.

  10. Nancy Kern says:

    Thank you for a wonderful story, similar to mine with my dad. Dad has decreased so much more. He no longer tries to stand, he’s on adult diapers and depends over the diaper. We had to admit him to long term care almost two years ago, he was hitch hiking from strangers and could barely keep his footing so fell often. At this point his doctors have told us he is on borrowed time and his time left with us is limited. He has masses the size of a fist in two places and from what I have found this is a possible link to his family. He is the fifth person in his family to have this terrible disease. He no longer knows any of his kids or grands. He will be joining my mom soon and this will be a terrible loss for me. I’m driving down to FL tomorrow to stay with him until the end.