Health AGEnda

Listening to My Mother

Posted in category Aging General, Chronic Disease

32 comments

"Don't forget I'm here."

I can’t deny it—I miss the mother I once had. Even at age 80, she was vibrant, loving, and independent. And she was strong. For nearly 20 years she provided care to my father, who before his death struggled with normal-pressure hydrocephalus and macular degeneration. What an incredible woman!

Unfortunately, time and illness are no respecters of persons. The past 12 years have not been kind to my mother. At 92, she has become frail and suffers with advanced dementia. Each challenging new decline—losing her memory; needing help to shop, bathe, and manage money; and now requiring assistance just to dress and eat—has left her feeling diminished, depressed, fearful, and incompetent. Recently, the appearance of other typical Alzheimer’s symptoms—changes in personality, behavior, sleep patterns, and in recent months, a growing disorientation to places and people—have deepened her feelings of inadequacy and frustration. It’s heartbreaking.

As difficult as her situation has been for family and caregivers, it has been far

"I feel like I have lived 1,000 years."

more so for her. And in that, there is an object lesson for all of us who have one of America’s more than five million Alzheimer’s patients in our lives.

Often, it’s tempting to let such an overwhelming illness obscure the person behind the symptoms. After all, can someone with a sick brain really have anything worthwhile to say? Over the holidays, my mother gave me the answer to that question.

I spent several days sitting alone at her bedside, summarizing the news, discussing family pictures, and talking with her about her childhood in rural Missouri. To repeated requests of “tell me what’s new,” I would retell and augment my stories of people and places that I thought might interest her.

Then something changed. Despite dementia’s deadly grip, on the last day I was there, she spontaneously started speaking. Her cry for help and understanding was clear. Below I have written her exact words in the order of what she said and asked of me.

“Corinne,

I appreciate all of the help you give me.

I know nothing about nothing.

Don’t ask me anything about anything.

I feel so desperate. My mind is zero.

You will have to tell me what to do and what not to do.

I feel like I have lived 1,000 years.

You have to keep me on the right track and tell me what to do.

You may have to tell me how to get to the bathroom.

I am desperate to learn things.

Is this the bed I sleep on?

So this is my bed. I have lots to learn.

Do we have one or two bathrooms?

Two? Yippee!

I forget sometimes, and you may have to tell me more than once.

Don’t forget I’m here.

What are the charges here?

When are we going home? I need my purse. You say that this is my home? How do you know? Your father and I bought it? I don’t remember.

I’m not that bright of a person, I don’t know everything.

I don’t want to make mistakes. You will have to help me as we go along.

If I do anything wrong you have to tell me.

I don’t want to cause any trouble.

What is allowable and what isn’t?

You didn’t ask how old I am—92, that’s right.

I was brought up in a farm in Missouri. We had 120 acres. I milked cows. I cooked. I got the eggs.”

That afternoon, I learned a great deal about the importance of intently listening to someone struggling with Alzheimer’s. My mother needed to know that I was genuinely interested in her questions and fears and that I understood her confusion and sadness. And likewise, it was important for me to show my caring and support. I may miss the mother I once knew, but I have also become deeply aware of how much I love and appreciate the one I have now.

I wonder how many other caregivers and family members have made the same discovery. With most of the media’s attention focused on caregiving, medical research, and most often, how much the growing number of older people with dementia are going to cost our society in scarce resources—both human and financial—we may not always listen to what the patients themselves have to say. Perhaps we are afraid and don’t want to acknowledge what dementia could do to us or our loved ones. We may feel that patients with dementia have nothing to tell us that we don’t already know. Or maybe we’re just too busy or impatient to take the time. But what my mother has taught me is that all of us—including people with dementia—need to be heard and understood, to realize we’re not alone, and to know someone loves and supports us for who we are—not just who we once were.

32 thoughts on “Listening to My Mother

  1. Cory, you did a remarkable service by reminding us that family (or patients) who are living with dementia have thoughts and feelings deserving of our attention. It’s helpful to anyone struggling with serious illness to be listened to. But those suffering from Alzheimers Disease of other forms of cognitive impairment can often be marginalized. I am so touched that you chose not just to listen as a loving daughter, but to share the poetic prose of your mom. We need to listen, not just to love or care for those with dementia.
    “I don’t want to make mistakes. You will have to help me as we go along.” Even with Alzheimers, by her own statement your mother knows that you are there for her. I hope providers hear her poignant words and remember that they need to listen as well. Much love to you both, Amy

  2. Cory,  Well done.  One of the stories that I often will tell is of the very first meeting with the staff of the nursing home where I had placed my aunt Sheila when I could no longer manage her at home in her NYC apartment.  This was back in the late 1990s.  Like yours, it’s about listening.  She had an advanced dementia with delusions.

    I arrived for the first family care plan meeting to be greeted by the administrator who rushed out to tell me:  ”your aunt kicked our best aide across the shower room this morning.”  He went on to report that everyone was coming to this first family meeting — the admissions director, the director of nursing, and a whole slew of other folks whose names and functions I don’t remember.  I asked if I had time to go up and talk to my aunt.   I did.  

    I asked Sheila how she was that morning and she said “terrible.”  I asked why and she said “I was about to close a very big real estate deal out in the Hamptons and someone kept bothering me.” How so I asked.   “She was pulling at me and wouldn’t let me finish what I was doing,” she said.  What did you do I asked.  ”I kicked her,” she said.

    I went to the family care planning meeting and someone — I’m not sure who — said:  ”Your aunt kicked our best aide across the room.”  And the Director of Admissions said, “you didn’t tell us she was violent.”  So, I drew myself up inside and asked:  ”Did anyone ask my aunt Sheila why she kicked the aide across the room?”  I remember the silence.  I remember the small voice that finally said “no”.  

    So I told them my aunt’s story of the morning.  And then I told them who she was and how she had lived her life.  That she was in point of fact not violent.  That she was a woman who had lived her life the way she wanted to live it and that she hated mornings. And then I asked, could they maybe see their way clear to think about ways in which her schedule could be adjusted to meet her needs.  The ideas started to flow.  ”She’s not a morning person, maybe we’ll put her last on the list for waking up, someone said.  ”Maybe we can let her stay in bed for breakfast,” someone else offered.  ”Maybe she could have her shower in the afternoon,” someone else said.  And all of a sudden, we had the beginnings of a person-centered care plan for my aunt. 

    All because I took the time to say, “Sheila, how was your morning?”

    Thank you for sharing your story.   Thank you for listening to your mother.  Thank you for reminding the rest of us how important it is to do that.

    Nancy

  3. Cory—what a wonderful account. I couldn’t help but read it several times. I know it is very personal to you, but it also has a lot of lessons and captures what Geriatrics is all about.

    I was struck by you poignant statement, “I may miss the mother I once knew, but I have also become deeply aware of how much I love and appreciate the one I have now.”

    I think the statement captures how we need to start explaining the role of Geriatrics to the public. For too long, we have put too much focus when selling Geriatrics to the public as the discipline that will prevent the frailties and disabilities of aging. Our emotional appeal has been grounded in the fear of aging.

    It is not that we shouldn’t be trying to prevent these disabilities–of course we should—but we sell false hopes of so called “successful aging” and dont acknowledge that the vast majority of people who live to old ages will have very substantial periods of disabilty. Yes, ev

    What if our message to the public was, “we know you much you miss the mother/father/grandmother/grandfather you once had, but we also know how much you love mother/father/grandmother/grandfather you have now.” And we are the ones who understand what you are going through and we are the ones who care about your loved ones quality of life and we are the ones who will provide the care and do the research that helps your loved one live with dignity and respect. And we will help you provide care, because we are the ones who know how much this affects you too and we know how hard it is on you.

    , Instead of grounding the emotional appeal in the fear of aging, we can ground the appeal in this universal experience of caring for and worrying about a frail relaive, and the love and devotion people have for their parents and grandparents.

    I think the public is ready to embrace this vision of Geriatrics, which your caring for your mother so wonderfully demonstrates it we can have the vision to ground our message in this universal experience, and embracing aging not as in terms of what the public sees in their own families.

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  5. Cory,
    Your comments triggered strong memories of my grandfather who made every effort to continue his chiropractic practice even after moving into a facility focused on Alzheimer’s care. After several episodes of complaints from other patients misinterpreting his “adjustments” as assaults, we worked with the staff to work on strategies for acknowledging his identity as Dr. Martindale, but also in redirecting him away from “treating” fellow patients.

    As has been noted, understanding the context of behaviors, providing staff history of the “whole person”, and acknowledging the emotions behind behaviors and questions facilitates more humane and effective care.

    Thank you for sharing this experience.

    Fox

  6. Cory:
    Your story of your mother carries an important lesson for us all and does so with such grace. Thank you. To remember that within the patient that a loved one has become, to remember amidst the burden that the patient makes us endure, that an individual is within, a parent, spouse, or close friend whose spirit is alive, We can listen and we must listen. Thank you.
    Robin

  7. Thanks so much for sharing this Cory – as with the others who’ve posted replies, it reminds me of experiences with my family – particularly my grandmother at whose bedside my grandfather would sit for days on end waiting and hoping for those few minutes of connection. And when he was fortunate enough to connect, he’d call all of us to say “Grammy talked to me today!!” Thanks for sharing your story and reminding us all of our connections in life!! kevin

  8. Dear Cory,
    What a beautiful statement and loving commentary on your Mom and your relationship to her as it was in the past and is today. We, who have been blessed, to have mothers who are with us as we age ourselves, learn much from what they still say and can convey. Your wisdom on your personal experience with your Mother is an important message to all of us. I thank you for sharing your thoughts.

    Warm Wishes,
    Barbara Berkman

  9. Corinne,
    Somehow seeing a person’s words in writing hits home (for me) in a different, and powerful way. I find wisdom and familiar sentiments in your mom’s words. Thank you for sharing them, and best wishes to both of you. You are lucky to have each other.
    Gail

  10. Dear Cory, I was so touched by what you had to say about your mother, and I thought Amy’s notion of poetic prose hit the nail on the head. All of your mother’s words taken together equal a poem. Poetry aims to communicate intense feelings with an economy of words, and that is exactly what you did. Taken as a whole, the words say something profound. Because of the inexorable nature of the disease, we tend to think of Alzheimer’s in all or nothing terms. You make sense or you don’t make sense; you’re with it or you are not with it.
    Your mother’s words show the deeper meaning behind the string of simple declarative sentences.

  11. Cory, how lucky you are to have discovered your mother’s great qualities a second time around. Like many others, I find myself saying “remember when….” and forget there is still a person living inside and not just a person with alzheimers. I can only hope that your message about listening guides me through the remainder of my life. Best wishes to you and the beautiful women pictured above that you get to call “mom”.

  12. Dear Cory, tears roll down my cheek as I think of your mother and my own mother who died at 101 and was no longer able to recognize me or even remember stories with me. Seeing my mother first in the assised living, then in the nurisng home as she declined was so hard and I felt, as you did, like I was not doing enough. You found that your presence was enough! You paint a beautiful portrait to a difficult situation that we can all learn from.

  13. Dear Cory ~

    Patience-centered care–that was the term that came to mind when I read the story of your time with your mother. For being with a loved one whose mind is shifting in and out of the present, it is perhaps patience that is the most important gift we can offer in return. Patience to listen, to answer the same question again, to start a story over again from the beginning. But most importantly, patience to just stay near.

    When my brother was dying from AIDS, the HIV eventually entered his brain. Ken was quite young, so his mind was still sharp, but it was shattered–it was like a splintered mirror–and he kept tripping from one scene or story or comment to the next. I was even younger, and had so little patience, and could barely stand to stay with him at his bedside. I just wanted him to be fixed.

    Since that time, and having watched so many caregivers over the years sitting next to my failing parents and relatives, it is the incredible patience of these staff that has always struck me as profoundly moving. And it was the story of your loving time with your mother that reminded me again that, in the end, we simply don’t want to be forgotten. We just want someone near.

    ~ Steven

  14. Dear Cory, Thank you for your reflections and for so clearly pointing out that older persons with cognitive impairments are adults with a history of accomplishments, emotional needs in the present, and often much still to share. So often people talk past persons with dementia to others in their presence or don’t respect the valued individuals that they are. As so many of the previous posts have noted, being with, caring for, and listening to is so vital and so much a part of person centered care – yet it does take patience and an openness to really hear what is being expressed in maybe unique of different ways.

  15. I keep re-reading this piece and am continually moved by your story and the prose poetry of your mother’s cry for help and understanding.  While scientists keep pressing towards finding a cure for Alzheimer’s and other dementias, there is so much we can and should be doing while we wait for these breakthroughs. Your story throws a beautiful spotlight on the critical importance of the caregiver-patient relationship and the need to pay close and serious attention to this connection throughout the disease arc. 

  16. Cory, your wonderful story conveys so many important lessons – listen, never give up, accept the person for who they are now and their reality and not just who they’ve been and our reality. While we do everything possible to manage, prevent and eventually eradicate this disease, we are well suited to remember that millions are “living with Alzheimer’s.” Your mother is a great illustration that even when buried under layers of damanged brain cells, the human spirit is alive until the very end and can shine through with a little help from a caring daughter.

  17. Cory, Thank you for sharing your mother’s story, which will (and should) touch many who are caring for loved ones with cognitive impairments. There are so many good lessons to be learned here about patience, love, and respect. But, as I read through the “prose poetry” of her words — “I don’t want to make mistakes… You will have to help me as we go along… If I do anything wrong you have to tell me.” — it struck me that they could almost be scripts for what we would want to hear from healthcare professionals involved in all of our care. Don’t we hope for professionals who are humble and aware of human limitations, attentive to the “goals of care,” and respectful of others? So very well said, Cory. — Gavin

  18. Dear Cory, thank you so much for this touching account of the challenges faced by both you and your mother. This piece struck a particularly deep cord for me because it highlights the risk that the older vulnerable person receiving services, the actual reason that the services are being brought to bear, can in fact become invisible if we are not careful. Your piece demonstrates so clearly that behind every severely ill person, with their long litany of clinical diagnoses, medication lists and therapy orders, is a real human being with joys, fears and memories.

  19. Dear Cory
    Thank you for relaying your mother’s words and your feelings. They especially touched me since it is almost exactly one year since the death of my Uncle Jerry (or “Unkie” as I called him as a kid). Jerry never had kids of his own, but in many ways was like a second father, teaching me how to drive, taking me fishing, etc. About six years ago, as he began to manifest signs of dementia he asked me to take responsibility for his decision-making as he progressed. Throughout this time, as he moved from no longer recognizing the names of my children to not remembering who I was (but always acknowledging that I was someone important to him), he never lost his own unique personality and his gracious good manners. Amazingly healthy and athletic from a physical point of view, he never failed to hold the door open for the female residents of the facility where he lived. He would compliment the women in wheelchairs, noting “how beautiful you look today” and his eyes would shine with joy each time we reintroduced him to our kids.
    Thanks, again for stimulating these memories.

  20. Cory, your words of love and caring for your mother gave me such a sense of the bond you two have had and the struggle and intense effort you and she make to maintain that connection despite the challenges of her dementia. As I read the comments here, it is clear so many of us have struggled with making the transition from child to care taker and doing it in a way that maintains our love and respect for that person who has been so important in our life. Cory, your mother’s voice and your listening to it is a symbol for all of us of the love that has formed us. You are so kind to share this moving and personal story.

  21. Cory, Thank you for this tribute to the abiding human spirit that resides in people with Alzheimer’s and other dementias. Your mother’s words express the universal need for feeling secure, safe and loved. As you describe so beautifully you have made the transition to accepting and loving your mother as she is. As I see every day , so many caregivers are dealing with the anguish of wanting their relative to be who they were, mourning the loss and experiencing the myriad feelings of sadness, resentment and anger. It is all a part of the journey to acceptance, when they can come to a place where they, too, can hear and appreciate the voice of the person with Alzheimer’s, if they can.

  22. Cory – Found my way here via Grand Rounds, and so glad I did. This was a wonderful post that truly captures what it is like to see a loved one transition from the person we knew to the person dealing with dementia. I too watch my mother deal with failing memory, and was always so stuck by what seemed like her complete acceptance of it. “I’m 84,” she’d say – “What do you expect?’, but at the same time saw how she maneuvered her way around conversations so as not to let on that she was completely clueless about so many things . She hid it for so long from us all.  

    Thanks again. 

  23. Dear Cory, you are so right – behind the face of dementia is a soul yearning to be heard, loved, and protected. In my past experience in direct service I learned that the emotional life of a person with dementia is retained even if the memory and ability to verbalize is no longer present. Providing positive emotional communication, even with those of us without dementia, can reap benefits for both people. Weeks before my grandmother passed away I visited her in the nursing home. She was wandering lost down a hall and panicking. I gently took her hands and looked into her eyes and comforted her while guiding her back to her room. She looked at me and said “I don’t know who you are, but I know I love you.” Knowing my name didn’t matter (although it is the same as hers), but knowing that she knew we loved we each other was all that matters. By listening and comforting your mother, you are communicating your love for her that goes beyond words.

  24. Thank you for the extremely thoughtful and incredibly important piece you wrote about your mother, and for sharing the insights she shared with you, with us. My mother was also a very vibrant, strong, competent, and creative person. She developed dementia in her late 70s. She lived for six years after the diagnosis. She had periods of lucidity even at the end. Sometimes they terrified her. I’ll never forget the time she cried out in fear to my sister, about a year before her death, “I don’t like what’s happening to me!” Fortunately, my sister was there to hold and comfort her. My mother was a lifelong opera-lover and always had a subscrption to the Metropolitan Opera in New York — “in the cheap seats,” as she put it. We usually went together and relished the music and the chocolate we smuggled into the opera house (my mother also loved chocolate) . A few months before she died I visited my mother in the assisted-living facility where she was living. She asked me if I’d ordered our subscriptions to the Met and I lied, assuring her that I had. Then I put on a CD of Renee Fleming singing a collection of Handel arias. I held her with her head on my shoulder and she whispered, “Maybe this is the best it can be.” I will always treasure that time with her, and the knowledge that she was still able, at least sometimes, to enjoy the many things she relished in her wonderfully rich life.

  25. Cori,

    Your mother’s words are as powerful as any I have heard from someone living with dementia. Her suffering as a result of cognitive decline is palpable but her in-the-moment strength, bravery and resilience in the face of that decline is inspirational. You say so well what I think many of us have been thinking but have been unable to articulate. Thank you.

    Lisa

  26. Thank you so much for sharing this personal story with all of us. I think that having a loved one with dementia is one of most difficult things to accept – and live with. We need reminders like this ….

  27. Cory-

    I applaud you not only for listening to your mother, but for doing what is often difficult for so many dementia caregivers-listening to yourself. Over the years, I have cheered from the sidelines as you have recounted caregiving stories where you resisted the knee-jerk reaction to challenge, question, and reality test. You have learned to stop before speaking and “take a pulse” to understand the emotional undertones of your mother’s conversation. In listening to your mother, you have listened to your own responses as they have become more comforting, forgiving, and person-centered. And for this, you have become the compassionate caregiver you are today.

  28. Cory, Thank you for sharing your personal story. You have so eloquently written about your mother’s need to be heard at a time when Alzheimer’s has claimed much of her mind. And, how lucky she is to have a loving daughter like you who takes the time to truly listen. I also want to applaud you for creating these blogs in which your staff share their very personal stories as a way to communicate big picture messages. It gives a very human touch to the issues that are central to the mission of the Hartford Foundation.

  29. Dear Cory, thank you so much for sharing the beautiful story of your visit with your mother. It was so poignant to hear her cry for help when she said: “I feel so desperate. You will have to tell me what to do.” And her sense of pride and dignity are apparent when she says: You have to keep me on the right track …I don’t want to make mistakes. I don’t want to cause any trouble.” All of her words are so touching, but when she said: “Don’t forget I’m here,” I began to cry. How often do we forget that people with cognitive impairment are still people – mothers, sisters, and grandmothers with rich lives. I have often read articles that report that familes of a person with Alzheimer’s Disease say: “This isn’t my mother any more.” I have always had trouble believing that, and you have shown us that even though she has changed, she is still your mother. She knows that you are her daughter, and you love her as she is. Thank you for including the beautiful photos, Cory. It is so important to illustrate through photos that she is a real person, and even though she may feel that she is falling into an abyss, she is struggling to maintain her identity, and she is calling out for help on this frightening journey. All of us must remember this when we care for people with Alzheimer’s Disease. Your experience should be required reading for all doctors, nurses, and others who care for people who are cognitively impaired. It is a special gift to all of us to have you as the Executive Director of the John A. Hartford Foundation. Jeanie

  30. Not to be competitive, but I can’t deny it – I’m impressed by the mother I have. Already past her 70th birthday, she recently was running around on the playground with my 8 year old shooting hoops. She put herself through college & graduate school, & was a full-time working mother who earned the respect & admiration of her family & colleagues while helping to raise 2 girls. She still has a successful, demanding, & fulfilling career & among other passions & talents, continues to be a loving & attentive mother, grandmother, daughter, sister & wife. What an amazing, incredible woman. Although in some ways my mother may be evidence to the contrary. More & more of us are joining the “sandwich generation,” those caring for the needs of our children as well as the needs of older generations & feeling a bit squeezed. These life-balancing changes are challenging & further complicated by greater distances between family members. Even so, increasing lifespans also represent a greater opportunity to share love, experiences,& connections in a deeper way across generations. Deep family connections are so important-from helping develop our own self-identity to surviving tough times. The love we feel for our family can be awe-inspiring. After the birth of our first daughter my husband talked about holding her for the time, looking into her eyes & being overcome with emotion–sayiing , “I don’t understand-yesterday, you weren’t even alive-you weren’t even here–and today I just love you SO much!” Still, while we have them, we really do need to appreciate the relationships that we have. There are always things we can learn from others-both about them & especially about ourselves as the message my grandmother conveyed so poignantly to my mother. I am so impressed by the mother I have–I have honestly been more fortunate than most. I know aging is inevitable. Despite my intellectual understanding of the process & its inevitability, I still feel devasted at the thought of slowing losing my own mother someday. I just hope I share some of her strength & fortitude. So Mom, even though reading your blog post made me cry, both for my own loss as well as yours, I still thank you for writing it-as sweet & raw as it was. I thank you for sharing the reminders, the memories, the lesons, the love & the understanding. Much love always, Alyssa

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