A Mother’s Blessing: Heart to Heart with an Alzheimer’s Patient

with my mom in 2005

I lie next to my 84 year old mother, my strong sun-browned body facing her frail white one. She takes up so little space now. When I am with her, I am usually the mother, holding and caressing her like a sick child. Mom and I became comfortable with physical intimacy after she was institutionalized with Alzheimer’s three years ago. For most of my life, she kept an emotional distance, but dementia, for all the suffering it inflicted, changed that.

After a month in intensive care with complications from a bleeding ulcer, Mom was released to this skilled nursing facility in Rochester, NY. She rarely speaks other than screaming “No.” She can’t stand up and doesn’t seem to know who I am. She is terrified of her caretakers and bites the aides. Somehow she still trusts me.

“Lie next to me,” she asks in a whisper of a voice, patting the bed with a slow hand. Surprised, I climb over the rails.

2007, the year of her death

I am her child again, filled with odd anticipation. Our breath warms each other’s faces. My head shares her pillow and her limp arm drapes over my waist. Despite all reason, I feel protected by her, cradled by the raised metal bars and the thin white curtain drawn around us. We float together in the shifting, watery space where her mind dwells, somewhere close to dream. Ever so quietly and ever so slowly, she speaks.

“I’m glad you don’t have to spend more time with me than you do. You spend too much now. If I lie quietly, I feel all right.”

We’re somewhere I haven’t been with my mother in years. She speaks in lucid sentences, rather than her usual disconnected ramblings. Her voice comes again, like a distant oracle.

“What a nice girl you are, Lainie. I wish you could have heard what your dad said about you. You’re such a good girl. I think you’re going to be successful, and it will turn out well and be worth all the effort. I’m not young anymore, and I can’t live forever. I want you to have as much happiness as you can.”

1996

She closes her eyes as I lightly stroke her bony hip. Her blessing softens my chest. I breathe deeply.

“Now you’re just like a feather on me,” she says, her voice a distant murmur. “It’s like a feather. I feel like a real mother to you and that’s because I am. I’ll always remember how lucky I am that everything worked out. It could have been the other way—that nothing worked out.”

She’s right. We are lucky. After manyyears of repeated attempts to build a strong connection, we rest together in that mysterious union reserved for mothers and daughters, a place where the boundary between us is thin and passable.

In my mother’s arms, 1946

“I love you very much, honey,” she says tenderly, her ancient voice resonating in her belly. “I would give you my arms if it would help you.” My tears soak both of us as I kiss her soft mouth.

“I don’t need your arms, Mom, I have my own.”

“I’m a lucky woman,” she says, smiling up at me. “It’s important to have someone you trust and love. We’ll talk about how much we love each other.” She is silent for a few minutes and then whispers, “Please, I want to go to sleep now.”

I carefully climb over the bars, tuck the blankets around her, and turn out the light. Once again, I am her mother, and she is my child.

“I’m leaving now, Mom. I’m glad you’re happy.”

“I am happy, Lainie,” she murmurs. “I love you so much. I won’t ever forget this night.”

 ***

Have you had surprising interactions with an elderly parent? Has someone you loved had Alzheimer’s Disease? Dancing with My Mother’s Death tells the story of my mother’s death in 2007 after suffering from Alzheimer’s Disease for twelve years. Death without Hospice, Life with Hospice gives more background about my mother and Alzheimer’s Disease. For excellent information and poignant stories about dealing with dementia, visit Ann Napoletan’s website The Long and Winding Row: An Alzheimer’s Journey and Beyond. (I’ve added more photos and made a few changes to this article that was first written in Feb. 2013.)

40 Comments
  1. Thank your for the great sharing. I was surprised by how my father’s emotions changed. He was an Alzheimer’s patient, and he said
    some of the nicest things to me. He frequently spoke from the heart.

    • Dear Bea, I’m glad you had a healing experience with your father in his last years. My father died in 1959 when my mother was 44. She was madly in love with him and her emotions shut down and didn’t awaken again until 40 years later when she had Alzheimer’s and lost her defensive wall. Then she needed to talk about grief and love when she was coherent at all. I was amazed and saddened by all she had held back for so many years. I learned much about how not to grieve from Mom, so vowed to open to the pain of Vic’s loss and not push everyone away. Thanks so much for taking the time to respond to my blog.
      Warmly, Elaine

  2. Achingly lovely. You write sooooo well about the feelingest feelings! I love you, my soon-to-be mom, just as I love my first mom and all the wonderful women who have mothered me over the years. Blessed.

    • Wow! Thanks Liz, my soon-to-be, but already in my heart daughter. Our mother’s blessings are so important. It took Alzheimer’s for my mom to dare to give hers, but I’m glad I was ready to receive it when it came. I even had a notepad in my purse that day, so could write down what she had said.
      Wishing us all blessings from the Mother,
      Elaine

  3. Tears are flowing down my face right now. How beautiful. I had a similar situation with my mother in her last days before she died of cancer. For brief moments it was mother to daughter again and then back to the mother (me) and child.
    This was how it was with my Jim as he suffered his last days with ALZ. Once in a very brief while he would come out of fog and be Jim as he used to be. Treasured moments.

    • Dear Anne,
      Yes, treasured moments. This experience happened eight years before my mother’s death. Her strong body lived with Alzheimer’s for many years. Her husband placed her in a nursing home in Rochester, but then I was able to transfer her to a skilled nursing residence just ten miles from my home–a wonderful place full of kind caring people. She knew who I was the day she was transferred in an ambulance, I suppose because of all the adrenaline, but then didn’t know me for many years. But she seemed comfortable and relaxed in her new life, so I was grateful to sing to her and brush her hair.
      I’m so sorry you’ve had to deal with Alzheimer’s twice, but I’m glad you had those loving moments with Jim.
      Thanks so much for telling me about your experience and for taking the time to write.
      Elaine

  4. This brought me to tears…so glad she blessed you…

    • Dear Gita. It was a big deal in 1999 and it’s still a big deal. I’m grateful it happened and now that I’ve lost on own husband, I understand her better.
      Thanks for taking the time to respond,
      Elaine

  5. Absolutely wonderful piece.

  6. Phenominal experience, and exquisitly penned. Gives hope to both the patient and the family that love will find a way to penetrate the separating film.

    • Thank you, David. It felt wonderful to revisit this experience, since a first draft was written in 1999 on the day it happened. I’ve always taken notes and had a notebook with me so I could write down just what my mother said. I knew I would need this blessing many times in my life.
      Best to you, Elaine

  7. What a powerful writing Elaine. thank you for sharing your experiences, including the pain. You have taught me so much about reaching out; letting yourself be where you need to be; and allowing the tears to stream. You know i adore you and love that you are in my life. Your writings enrich it all the more.

    • Wendy, your loving message makes my day. I return this great appreciation to you. You held and nurtured me from the moment I walked into your office at Hospicare looking to volunteer at a task that allowed those streaming tears. And from then, four years ago, you’ve supported me and many others with your kind heart, welcome smile, and open arms. So the circle of love and support gets bigger and bigger.
      Thank you for being such an important part of my new life.

  8. Your beautiful writing leaves me breathless, and blinded by my tears. This is a magnificent piece, Elaine. What a precious memory you have of this special time with your mother, and you’ve shared it so clearly it’s as if we are there in the room with you. I am in awe . . .

    • Wow, Marty. My mom and I had a distant relationship after my father’s death in 1959, but around 1995, she was diagnosed with Alzheimer’s. Then she sometimes opened to me and spoke about her 35 year old love and grief over my father’s death. This was a gift in itself. I didn’t expect more from her because she didn’t recognize me most of the time and rarely spoke–and then this tremendous outpouring of love and support. Thank you for your encouraging words. This story was easy to tell–and I had a notebook with me so I wrote down her exact words.
      May we all feel Mother love,
      Elaine

  9. Your ability to speak from your heart is profoundly moving. Thank you for sharing yourself with all of us.

    • Thank you, Ava, for reading and for sending such loving words of encouragement as I sit at my desk and fret over next week’s blog. It’s a pleasure to tell stories to open receptive hearts like yours.

  10. To be a mother, to have a mother – it is so amazing how it shifts back and forth as we age. Thank you for this.

  11. That made me cry. My mom’s still living and in reasonably good health, and I know how very sad I will be when she dies.

    • Thanks for your comment, Ruth. My mom went back into her senile state and lived while mostly sleeping in seeming peace for another 5 or 6 years. When she died, she just faded away with a nearly imperceptible difference between breathing and not breathing–and by then, my processing and grieving were almost done and her death was a relief. I think Alzheimer’s has this effect because the mind and soul seem to be gone while the body goes on. I’m glad you are close to your mom and that she’s in good health. May you have a long time to love and enjoy each other.
      Warmly, Elaine

  12. My mother and I always had a rough time communicating. We did best when she took me clothes shopping as a young girl and teenager. She put me in a changing room and brought me her choices of what would look best on me. Part of the reason this approach worked, was because my mother always had exquisite taste. It still would have been more satisfying overall if she had invited me to take part by inviting me to make some of my own choices. After a while she did let me off the leash….After I had agreed to purchase a few of her selections, she would let me go out on the floor and choose a few things that I was drawn to. I was surprised (especially in the 1960’s) that she actually liked some of my choices but she did and I think she was surprised she liked some of my hippy choices too. When I met Bill, it blew me away that his presence actually helped to build a bridge of better communication between Mom and I. My Dad had passed away a few years before I met Bill. It wasn’t without stress when my Mom came to visit Bill and I and then the 3 of us (our daughter) but it sure helped. Bill makes a great bridge at times;(. When Mom only had days to live and I was helping out in MA as she lay on her in home hospice bed, Bill came to help out for a few days. When he had to return to Ithaca and said his final good byes to Mom, she spoke as he left (after not speaking for a long time) and said : Billy, don’t go. Please don’t go Billy….And then he left. It was both a deeply touching moment and heart wrenching…..Bill told me later that Mom’s last words to him stayed with him on e long 6 hour trip back to Ithaca.

    • Oh, Lisa. You married a sweet man. Vic did this same thing with my mother. He smoothed the energy between us, as there was much distance after she left the country for four years when I was in college. My mom loved Vic, and he was with her when she died because I was in Canada and couldn’t get home in time. She had lingered for many many years and then took a quick quiet exit. I can just imagine Bill providing this loving connection for you and how your mom’s words pulled at his heart and yours.

      I did lots of connecting between Vic and his mom. She was hard for him and he tended to keep away from her. I sent cards, made sure she was included in everything, and reminded him to call–which he did with a little nudging. She doesn’t realize what a good daughter-in-law I’ve been, and that doesn’t matter as long as I let go of my need for her appreciation.

  13. I am moved to tears by your writing; to be present with you in that loving moment with you two. The eternal triangle of father, mother, and child; your mother wanting to include her husband and be sure that you knew how very much he loved you. She was able to splice time and bring your father right into that moment.
    Thank you.

    • It was the sweetest moment in a dozen years of Alzheimer’s. I often kept notes when my mother spoke–her wording was interesting as she searched for ways to express her feelings and I wanted to remember. She spoke so slowly that, lying next to her, I could write down her exact words during long pauses. It was a precious healing experience. I never doubted her love or my father’s, but she had rarely expressed feeling in the previous forty years. My heart melted me as she spoke her blessing. I appreciate your kind words, Tanene.

  14. I really can’t find the words to describe how this resonates with me. Such a beautiful story.

    “I am her child again, filled with odd anticipation.”

    Oh I remember those moments. An approving smile, a familiar pat on the leg, or a certain kind of hug that made it feel like once again – if only for a few seconds – I was the daughter, and she my mother.

    My mom had moments of clarity as well, where she would speak a sentence as clearly as you or I. Never the lengthy conversation like the one you describe here, Elaine, and I can only imagine how incredible that must have been. A simple “I love you” or “You’re a good girl” sent me over the moon with joy. The moments we take for granted…. Alzheimer’s teaches us to take nothing for granted…

    Much love to you, and thanks for sharing this again.

    • It was a remarkable experience, Ann, in a sea of oblivion. Unexpected and dream-like. I always (still do) kept a notebook with me. She spoke so slowly with such long pauses that I could write her exact words while lying down. A lasting gift! She had many more years ahead, but after I moved her close to me, her last years were peaceful. Constant sleep, but no fear and deep rest.

  15. What a beautiful memory, told simply and powerfully.

    Happy Mother’s Day, Lainie.

  16. Thank you Elaine. This is very moving, very tender. Straight from your mother’s heart to yours and from yiours to we who are reading this. Happy Mother’s Day.

    • Thank you, Susan. It was a moment of miraculous clarity and love in a sea of mental chaos and fear. I’m forever grateful for this memory in the midst of 12 hard years. Happy Mother’s Day to you, too. (Every day is Mother’s Day!)

  17. My mom also had Alzheimers. My mom was my world as a child and in the end I was her caregiver along with my dad. I suppose that was the blessing in the lesson. It sure felt crappy and it was no fun but looking back I was able to give back some of the love I had the fortune of recieving from her. We have this in common.

    • It’s a hard job, Randi–for you, for your dad, for me, for so many. My mom’s husband placed her in an Alzheimer’s facility instead of getting in-home help. He wanted out. I had no vote since he had power of attorney. After a few years, he divorced her. I moved her close to me about a year after “The Blessing.” My mother taught me many things, including the peril of not having a plan for elderly years and the distance that comes when families can’t speak about grief.

  18. Such a lovely post. I remember when my mom was dying. We had never shared much physical intimacy, she was a hard-born, Kansas farm girl who didn’t know much about loving touch. For four months, between a disaster of a surgery and her death, I was able to care for her, and even though it was sometimes hard and not always pleasant, I treasure those months I had with her. Because I could touch her. I could bathe her, and caress her, and rub her skin with lotion, and knead her sore shoulders. Later, toward the end, she went to stay at Hospice House. She was unconscious for two days. I painted her toenails as I spoke to her, not knowing if she heard me, I brushed her hair, washed her face, moistened her mouth with cool ice chips. And the day before she died, I climbed into bed with her and held her. I must have laid beside her for a couple of hours, her small, frail body next to mine. I will always treasure those hours, our closeness, that touch.

    • Such sweetness and healing in your story, Tricia. My mom lived many more years after this experience, but mostly curled in a fetal position, still swallowing food and sipping through a straw. She didn’t speak or even open her eyes for years. That, too, brought healing and acceptance–and exhaustion. I imagine for your mom, there was the sense of being safe and cradled in your love. My mom slipped out of life with a whisper while I was out of town at a Marion Woodman workshop. My husband was having a good stretch (never remission, but a break in treatment) and was with her because I couldn’t get home in time. He meditated next to her while she died. He sent me a photo of her to show me how relaxed she was.

  19. Dear Elaine,

    What a touching and beautiful story, especially because Alzheimers sufferers can be so difficult and even violent. Your love and touch clearly soothed her, set a foundation of trust for her in a neverland of being alone. Your role of nurturing confident in the realm of grief is so laudable and generous. Thank you. Now I have to dry my face.

    • Thank you, Rufus. It was an important moment of healing for me. My mother became violent with Alzheimer’s, too–biting and scratching health care supporters out of fear. I moved her closer to me after experience–with her husband’s permission. He wanted out. I had more nurturing to do. She died one year before Vic.

  20. In my family, we have always been very physically affectionate. We call it PA, which means personal attention. You can ask for it. I taught my children this too. When my mom was dying, every night before I went home, I would wash her feet and put lotion on them. I did it for myself really. One night she said, “Don’t forget to rub my feet before you go” and I realized that she enjoyed it too. On the day before she went into a coma and died about 4 days later, my nieces, whom she had helped raise were on their way for the day. She didn’t want them to come. Finally, her caretaker and I convinced her that we would field them for her and she agreed to bathe and put on clean bedclothes. She looked up at me and said, “Well, I suppose if they don’t get to see this, they won’t know how grand life really is.” I always thought she was speaking from Heaven that day.

    • Thank you, Stephanie. You and your mom are/were wise women. I agree about the importance of PA. Also that if we hide death and infirmity from view, we aren’t teaching the young ones about the nature of life and how to deal with hardships. Now and for the past decade, I watch my mother-in-law go through the trials of being 102–including having her only child, my husband, die. End of life is rarely pretty, especially when it goes on and on and on. You mom was so fortunate to have you rubbing lotion on her feet. Thank you for doing that. I had to fight to see my own father before he died and I was only 14. Trying to protect the kids was a bad idea because it only made us feel isolated and unsupported.

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