Elaine and her mom, 1998
Hill Haven Skilled Nursing, 1999
My healthy sun-browned body lies in a hospital bed with railings. My pale mother lies facing me. I often feel like her mother now, holding and caressing her like a sick child. Mom and I became comfortable with physical intimacy after she was institutionalized with Alzheimer’s in 1996. For most of my life, she kept an emotional distance, but Alzheimer’s Disease, for all the suffering it inflicted, changed that.
In April, 1999, Mom passed out and collapsed on the floor at her Alzheimer’s residence. Her second husband overrode her DNR and ordered doctors to do anything to save her. She spent many weeks in intensive care and over a month in the hospital before being released to a skilled nursing facility in Rochester, NY a few days ago.
My mild-mannered mother doesn’t speak except when she screams, “No.” She can’t stand or walk. She refuses food and bites and scratches the nurse’s aides. She trusts me, even though she doesn’t seem to know who I am, and allows me to hold her hand.
My mom, 2007
“Lie next to me,” she says quietly, patting the bed with a slow hand. Surprised by her coherent request, I climb over the rails and settle in. There is room for both of us since she takes up so little space.
Lying next to her, I’m 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 her arm, the raised metal bars, and the thin white curtain drawn around us. We float together in a watery space somewhere close to dream. As if from a great distance, 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.”
Her voice is unusually deep. She speaks in sentences, rather than her usual disconnected ramblings. Her voice comes again, like a distant oracle.
Elaine and her mom, 2007
“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.”
She closes her eyes as I lightly stroke her bony hip. Her blessing softens my chest, and I breathe deeply.
“Now you’re just like a feather on me,” she murmurs. “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.”
Mom, 1987
She’s right. We are lucky. After forty years of attempts and failures to find the strong connection that was broken by my father’s death, we rest together in that mysterious union reserved for mothers and daughters, a place where the boundary between us is thin and passable.
“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.”
Mom and me, 1946
“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.” After a long pause, she 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.
“You sleep now, Mom. I’m glad you’re happy.”
“I am happy, Lainie,” she murmurs. “I love you so much, and I won’t ever forget this night.”
***
I shared an earlier version of this post in February 2013. I can’t think of a better tribute to my mother. Have you had healing or difficult interactions with an elderly parent? Has someone you love had Alzheimer’s Disease?
My mother lived eight more years. She never walked again and didn’t recognize me or my brother. I always felt that overriding her DNR was a cruel mistake. You can read about that experience in From Medicine to Mercy. But without those extra years, I would not have received her blessing. You might also enjoy My Mother’s Rules about my relationship with my mother after my father died.
On May 1, Leaning into Love won the 2015 Gold Medal IPPY Award (Independent Publisher Book Award) for Aging/Death & Dying. My mother valued success and achievement in her pre-Alzheimer’s years. Thanks, Mom, for teaching me to work hard and persevere.
That’s so lovely, Elaine. Thank you. It’s just what I needed to hear today.
I’m glad, Paula. My mom had Alzheimer’s for nearly 15 years. It was a grind in so many ways, but there were a few illuminated moments when we made contact. I’m grateful for those moments, but her bout with Alzheimer’s left me shaken.
Wow Elaine, what a touching story. You are boundless with your compassion. I’m glad you’re mom got to comfort you in later years. You certainly had your hands full with Vic’s illness, your mother and your mother-in-law. Bless you. <3
Thank you. I’m grateful I could help my mom and Vic, Debby. It was challenging when my mom was withering and Vic was going through cancer treatment, but Mom needed very little then. She was in a skilled nursing home, very relaxed with no suffering, and got great care there, so I visited rather than feeling responsible for day-to-day care. And my mother-in-law? Chugging along at 99. Obviously losing ground mentally, but who isn’t? I sometimes think she will outlast me and all her health aids.
You are expert at bringing a distant memory into sharp focus. I felt as though I was right there in the room with you and your mother. Poignant lines: “we rest together in that mysterious union reserved for mothers and daughters, a place where the boundary between us is thin and passable.”
My aunt has been afflicted with Alzheimer’s disease for over 7 years now and has kept a journal for about 4 of them. This year she doesn’t fit any words into the large squares on her calendar, which makes me sad. We are thankful though for the pieces that we can string together to make some sense out of her last literate years. I think we’ll call it “The Long Goodbye.”
Congratulations on your most recent honor. I’m so proud of you, Elaine, now the Gold Medalist.
Ah, your Long Goodbye. It’s hard to watch a person fade inch by inch. I’m sorry for you and your dear aunt.
This story came about because of the memoir writer’s trick–one you know well. I wrote down everything Mom said at the time, typed up my notes, and kept them. Her exact words were surprising and powerful. I didn’t want to forget them. I always kept a notebook with me when I was with her (or with anyone for that matter). The little notebook was in the bed with me and sometimes I’d write a phrase during her long pauses (lying and writing on my side like I do when I have a dream in the middle of the night). After I climbed over the railing, I did more writing to get the details. I did the same thing during Vic’s illness. When life is emotional, I know I’ll forget, so I write things down, including my own reactions.
Wow,Elaine, congratulations on your award!!! To you AND Larson!!!
XOX
Myra
Thank you, Myra. It was a surprise. Amy (one of my publishers) called to tell me, “You won the Gold IPPY.” I kept saying, “Are you sure?” Next morning I sent an email asking if IPPY had emailed her to say it was a big mistake. 😉 Not a mistake. The real deal. I’m going to New York City to receive the award, even though I get it whether or not I go to the award’s ceremony in person. I’m going. When will something like this happen again?
You GO girl!!! YAYAYAYAY! And, well deserved, so please enjoy the accolades and whatever publicity this brings. XOX Myra
Thanks, Myra. As always, we’ll see what life brings.
This is very beautiful Elaine thank you … truly I have goosebumps. How strange for her husband’s refusal for DNR yet to have her extraordinary blessing some while later. Life moves in mysterious ways.
My late mother was in frail care for quite a long while. My sister lived in Cape Town where she was and I would visit from time to time from Johannesburg. My brother lives in Durban so we were/are scattered. My sister wanted him to come and visit our mother as she thought she was definitely dying. He said no he can’t come, all was too busy at the hospital where he worked. But, my sister booked an airticket for him from Durban to Cape Town on a weekend. She fetched him and they went through to the frail care. It was an emotional time for my brother. It was a long while since he’d seen her. After an hour of being with her, they left and went through to my sister’s home, a ten minute drive away. As they went through the front door the phone was ringing and it was the frail care to say that my mother had just died.
He had got there in the nick of time –
And when I last saw her – well that is another story, also a moment of grace …
Many many congratulations on your very recent win of the 2015 Gold Medal Award Elaine! Lovely news indeed!
I look forward to reading about your moment of grace. If you’ve already written about it, please share the link. If not, I’ll wait.
There are so many mysteries around death. Did your brother make it just in time or did your mom wait for him? Did my youngest son make it just in time or did his dad wait for him? Vic had been on the edge of death for a few days, but he was remotely conscious. I whispered in his ear that our son was there. Our son held his hand. Vic opened his eyes for the first time in a few days and gazed deeply into our son’s eyes, a sort of transmission. Vic also squeezed his hand. Then he closed his eyes and stopped fighting for breath. He died in 45 minutes with our son still holding his hand. My mom died when I was in Canada. I rarely traveled then because Vic was having cancer therapy. Vic was with her as she faded away in her nursing home bed. I was with a circle of women at a Marion Woodman Body/Soul Rhythms workshop, so I had a tremendous amount of support, including a powerful dream of a hummingbird being released from a cage. Did my mom know that?
Thanks for your good wishes. It’s wonderful to have the book acknowledged and my few minutes of fame at the award’s ceremony in New York City will be exciting. Then, on to the next writing project. Actually, I need to write today and I will.
Elaine, your story brought tears to my eyes. I never got to have this conversation with my mother because I didn’t think she was dying. I was focused on getting her out of the hospital and into rehab. While I took a couple of hours off to rest, she died. She didn’t have dementia–died of other causes.
But both my husband and father had dementia/Alzheimer’s. Those DNRs are a blessing!
And yes, you do deserve that award for your book!
Lynne, death is hard to pin down. My mother languished for eight years after the experience I write about here. For five of those years, she was curled in a fetal position and didn’t open her eyes or respond unless startled. So the goodbye was many years before her death, but I feel fortunate we had these moments. Sometimes, often it seems, people die when their loving family is out of the room. Maybe it’s easier for them that way.
DNRs are great if everyone in the family is on board. Mom didn’t talk about it much, but I knew she had a DNR because she set it up when her mother had Alzheimer’s. Mom’s husband knew, too, but she obviously hadn’t convinced him to back her up. It was a long eight years.
Thanks for your kind words. I’m grateful.
(((Elaine)))… this piece makes me cry. It’s so beautiful. The fact that you shared that evening together – where she was present and able to communicate what was in her heart. What a gift.
“My head shares her pillow and her limp arm drapes over my waist. Despite all reason, I feel protected by her…”
I’ve felt this same feeling – despite all reason, as you said. Even in the last stages, there were moments where my mom reached out to hug me, or we sat together and I laid my head on her shoulder, or she stroked my face or gently patted my leg. In those moments, she was my mom again and I was her daughter. Oh how I loved and appreciate those simple moments when things were as they were meant to be. The things we take for granted…
Thank you for sharing this beautiful story and congratulations on your well-deserved 2015 Gold Medal IPPY Award.
With love,
Ann
Thanks, Ann. I wrote about this before, but needed to explore this memory for Mother’s Day this year. I know you know how precious it is. Yesterday in a women’s mythology class, we discussed our mothers. I’ve explored the difficulties of my relationship with my mother many times in my life, but we focused on the gifts our mother left us. My mother left me with her determination and grit, her curiosity and interest in new things, and her interest in healthy diet and exercise among other things. But this moment lying in her hospital bed was one of the greatest gifts, because I felt her love backing me in everything I do and I still feel it.
My mom was also ambitious, and sometime her ambition for me felt choking and that I could never be good enough. But the IPPY award felt like a gift that fulfilled her dreams for me. Do they know? I can’t say for sure.
Sending love back your way, Elaine
I believe they do know and oh how proud she must be….
I don’t know if she knows, Ann, or who she might be now, but the part of her that lives in me is certainly proud. I feel the book award was for my mom in terms of an achievement (she loved achievement) and for Vic in terms of the heart.
This one made me cry. Quite a bit. I know it’s because I never did get that one moment with my Mom. I waited so many years and it never happened. Oh well, I did get it with my Dad and it has stayed with me always. Beautiful as always Elaine. Thank you!
I couldn’t get close to my mom in the years after my dad died. She just wasn’t available. Then this surprise fifteen minutes in the middle of dementia. What a gift it was. I’m glad you had your dad and sorry you didn’t have that moment of connection with your mom.
Thanks so much for taking time to read and comment, Dennis. I appreciate it, including more about your story.
I love this post, Elaine. I must have been pouting so much on Mother’s Day that I missed it completely. And it’s so perfect. It must have felt so good and so sad to hear her speak of her love for you. Hugs!
Mother’s Day was without family this year, so I was grateful to meet with a group of women and talk about mothering (whether or not a woman has biological children) and being mothered.
My mom and I had a distant relationship for many years. Alzheimer’s made her frightened and vulnerable, and she openly expressed her feelings for the first time since I was a kid. It was easy to love and empathize with her. I’m grateful we had a last chance.