From Medicine to Mercy: Defending an Alzheimer’s Patient

Elaine Mansfield is a caregiver who poignantly shares her mother’s story and describes caregiver frustrations, including defending Alzheimer’s patients as they battle the heart wrenching disease.

By Elaine Mansfield

Elaine’s mother Iva Hatfield and Elaine Mansfield, 1996

Elaine’s mother Iva Hatfield and Elaine Mansfield, 1998.

In 1998, a staff member at the senile dementia home in Rochester, New York found Mom passed out on the bathroom floor, bleeding internally, moving gently toward death. Mom’s second husband rescinded the “Do Not Resuscitate” order she had signed ten years before, overriding her clear intentions.

Mom endured four weeks in the hospital; transfusion after transfusion, followed by surgery, followed by incessant needles taking blood samples out and putting new blood and nutrients in her weak body. My polite mother who never raised her voice, screamed in protest and ripped out the IV lines. The medical team tied her arms and put thick mittens on her hands; but she escaped her restraints like Houdini. Then she bit the tubes in half.

“They’re trying to help you, Mom,” I pleaded as I lay across her fragile, flailing body, holding her so a technician could draw blood.

“They’re doing a lousy job,” she howled in my ear.

I agreed.

Craziness Ensues

Elaine and her mom, 2006.

Elaine and her mom, 2006.

Two weeks after they discharged her to a new skilled nursing home, her husband called. Since her move, I’d driven the two hours to see Mom many times. She was traumatized and barely eating.

“They tried to put a new IV line in your mother, because the doctor says she is dying of malnutrition,” he said. “She’s fighting like a wild animal. They called the hospital to get a special nurse to sedate her and put the line in.”

What? No one mentioned this possibility when I saw her two days ago. Tie her down, sedate her, and terrify her again? The knot in my gut shrieked, “Absolutely not!” But somehow, I managed to speak in a calm, measured tone.

“Could you delay the intravenous feeding until the family has a conference call with the doctor?” I pleaded. He agreed. My brother, Jim, set up the call for the next morning.

The doctor gave Mom’s case history:

  • Unhealed, infected wound from ulcer surgery
  • Alarmingly low serum albumin levels
  • Severe malnutrition
  • Dehydration

This laundry list of concerns didn’t even discuss her advanced dementia and combat-ready attitude.

She bit, scratched, and screamed; she ripped the stethoscope from the doctor’s ears. The doctor’s calm voice betrayed no feeling. I struggled to hold back tears. Finally, the doctor listed tortuous options, each sentencing my mother to months of medical invasion, sedation, and restraint.

“What would you do if this were your mother?” I interrupted.

There was a long pause.

Elaine with her mom

Just before Elaine’s mom passed away in 2007.

“Sometimes I must speak as a doctor. Sometimes I must speak as a human being. They are not always compatible,” he whispered. “I would make her comfortable and call Hospice.”

“We could stop this medical intervention?” I ask.

“Yes,” the doctor said, and Jim agreed. And then my mom’s husband agreed. I was stunned. Suspended, I waited for him to change his mind, but he didn’t. We took a breath and thanked the doctor, our relieved words spilling out and crashing into each other.

The Quiet After the Storm

A few days later, I drove to the nursing home to meet the new Hospice aide. Mom sat in her wheelchair, calmly studying the snaps on her blue flowered smock. She looked up with bewildered pale blue eyes and smiled for the first time in six weeks. She didn’t know I was her daughter, but she trusted me. I coaxed her to swallow tiny bites of pureed food and sip chocolate Ensure through a straw. Soon, she begged to go to sleep, moaning softly as the aide and I tucked her in. The wild woman had become a sweet baby girl.

“I like it here at your house,” she said quietly, her bony hand drawing a vague circle toward the white nursing home ceiling. I had a feeling she would stay for a while.

Does Elaine’s story resonate with you? How do you think we can change our system so that people battling diseases don’t need to suffer? We welcome comments below.

About Elaine Mansfield

Elaine Mansfield writes about love, loss, and continuing bonds on her website. She is Hospice volunteer, leads bereavement groups for women who have lost a partner or spouse, and writes for the Hospicare and Palliative Care Services of Tompkins County newsletter and website.

View Elaine’s impressive resume that includes expertise on nutrition, preventative health, personal training, caregiving and healthy living. This fascinating lady is truly an inspiration!

Please leave your thoughts and comments

  • Esther Altshul Helfgott

    Did Iva’s husband have the legal authority to rescind her “Do Not Resuscitate” order? It seems to me she went through unnecessary pain in having to endure invasive measures that she obviously didn’t want.

    • Elaine Mansfield

      Hi Esther. Wow, it’s complicated. Her husband had egal power because in New York State in 1996, a spouse could overturn or cancel the DNR. I don’t know if that is still true. I hope not. My brother who actually had legal power of attorney wasn’t consulted because it was an emergency in Rochester, NY. My brother lived 7 hours away and I lived 3 hours away. It was over before we knew about it, and then it was too late. I saw her the next day in Intensive Care, intubated, sedated, full of tubes. There would have been a legal battle to pull the plug. This is what happens when people don’t have an end-of-life wishes talk with the person or people who will be in charge. Fortunately my husband and I had that conversation many times, so I could make the right decisions at the end. Not easy.

  • Ann Napoletan

    So very sad. Beautiful piece, Elaine, and it really drives home the importance of formalizing your wishes and ensuring that your health care POA/guardian, etc., will abide by them. It’s indescribably hard… I watched my mom wither away for 9 days with essentially no food or hydration… she literally melted into a mere shadow of herself right before my eyes and it was the most painful thing I’ve every witnessed.

    It felt wrong to do nothing… our human instincts tell us we must intervene in an attempt to “cure” … but in this case, there was no cure and she had entrusted me with her wishes. I had them in writing – on paper, right there in black and white. She had affixed her signature years earlier when she was of sound mind – no hint that dementia would be in her future. It was difficult, but I knew we were following her desires… thank God I didn’t have to make those decisions myself.

    Thank you for sharing your story, Elaine…I’m certain this will help many other families. xo

    • Elaine Mansfield

      What a powerful responsibility you had, Ann. I’ve asked my sons in heart-to-heart talks to please abide by my medical wishes. I know they will, as you did. And it might be hard for them to watch as it was for you and your daughter. I thank you forgiving that gift to your mom.

      In the end, my mom had a peaceful death. A lot happened in between. That’s another story to tell and I’m getting ready to tell it. You make me realize that my obvious question asked to the person rather than the doctor’s white coat put her true wishes into effect after all, but it was a nightmare for all of us getting there. Her mother, my grandmother, had Alzheimer’s and my mom was her primary caretaker. Mom didn’t want that to happen to her.

      Thank you for telling your story, Ann, and for suggesting I submit this article to Alheimers.net. It’s been a great supportive experience.

  • Dianne Rizzo

    Beautifully said Elaine. I was very active in the home birth movement and was blessed with witnessing many births, both easy and difficult entrances into the world. Now I find myself at the exit helping my mother go through. These experiences are incredibly joyous and painful at the same time. I have learned profound lessons from both. Thank you for sharing yours.

    • Elaine Mansfield

      I feel myself on that same axis, Dianne, although I didn’t do home births. There was no one to support us in 1970 where I live, and despite my trusty Mexican Midwife’s Handbook, we didn’t feel able to do it on our own. Vic was with me for both births and later I attended a home birth and two birthing room births. Both sides miraculous, both sides challenging. A long journey or sometimes a short one. You inspire me to write about what happened to my mom (and me) next. Thanks for reading and caring enough to respond.

  • Martha Stettinius

    A very powerful and painful piece that brings me right back to my mother’s final days (she also had advanced dementia). I recommend to caregivers that they have not only a Living Will, Health Care Proxy and Durable Power of Attorney for their loved one, but a Physician’s Orders for Life-Sustaining Treatment (POLST) form–a more detailed version of a Living Will that is meant specifically for people who are receiving long-term care and are close to the end of their lives. To find out if your state offers a POLST form, visit http://www.polst.org/programs-in-your-state/

    It’s so important to have these documents in hand, to discuss them with your loved one’s doctor (who signs off on the POLST), and, if your loved one lives in a facility, to review them with the staff at your care plan meetings. EMS crews, hospitals, and facilities will do everything they can to prolong a person’s life–including interventions such as CPR (which can break the bones of the very elderly), feeding tubes and intubation that your loved one might not want–unless you say otherwise. It’s hard to think about these end-of-life issues when we’re so busy making sure that our loved ones have the best quality of life they can have from day to day, but you will be glad you did.
    –author, “Inside the Dementia Epidemic: A Daughter’s Memoir”

    • Elaine Mansfield

      Thank you for your comment, Martha, and I want to recommend your book Inside the Dementia Epidemic: A Daughter’s Memoir to anyone who doesn’t have it. Unfortunately, my mother’s husband was in charge of decision making at the time of this event. After this I have another story to tell about how he let me take over and move her close to me. I made very sure that the new skilled nursing facility had all the information and that it was clear that my Mom would never be taken to an ER or given DNR. They followed these directives when the time came. All the paperwork was in place, but the person, in this case my mom’s husband, who is on the health care proxy has to follow through.

  • Juliann

    Thank you for writing this Elaine. My mother has given me her wishes and I have all the forms, Health directive, POLST, POA, and my son has a copy also. She and I feel the same way about this. I am an only child and my father has passed away so I don’t forsee any problems but you never know. Her doctor is very understanding and agrees with us. Mom is in Assisted Living and moving to Memory Care in the next two weeks. Your timing was meant for me to read this now! I am definitely going to go over the forms with the care team again at our first meeting after she moves to the new floor. I have always felt that we euthanize our beloved pets but we make our loved ones suffer needlessly. Not to say that we should put them to sleep, but watching them waste away to nothing is so hard and who knows how they much they actually understand at that point in their illness. Memory Eternal to you and your mother, God Bless.

    • Elaine Mansfield

      Thank you, Juliann. It sounds like you have everything in place with your mom. After my mother’s husband agreed to let go of control, I moved her to a skilled nursing home ten miles from my home. For the first 6 months, I went to her monthly care team meetings to make sure everyone on staff understood the directives and were doing all possible to ease her fears. They needed to know the frightening events of her recent history and that she had been a gentle soft-spoken teacher once, because she was still frightened and resisted anyone or anything that felt like a threat. Within days, she relaxed into her new life. The aides treated her with loving dignity and gentle humor. Soon she was enjoying her limited life again. She smiled. I smiled.

  • Ellen Schmidt

    Thank you Elaine for this poignant and chilling story that is surely more common than we would hope. Your pictures augment the story as it unfolds. I know there are more “chapters” in this story. While my mother did not have dementia, I discovered that even with all the paperwork in place and all her wishes discussed and acknowledged, there were many gray areas in the decisions I had to make as her health proxy at the end. When she was still in pretty good shape but in advanced years, I had always feared finding my mother dead one morning, but later I realized what a blessing of a way to go that would have been! Instead it took several years of roller coaster experiences and feelings.
    My father said when I was very young that we have no defense against death – except that we can talk about it. I have found his words ever more wise.

    Thank you, Martha Stettinius, for that added paper work suggestion that I hadn’t yet heard of and even more for your wonderful book, Inside the Dementia Epidemic: A Daughter’s Memoir.

    [I feel especially happy that both of you, Elaine and Martha, have written many portions of your books and blogs in my Writing Through The Rough Spots classes. W
    hat a privilege for me to have such talented writers!]

    • Elaine Mansfield

      Thank you for your perceptive comments, Ellen, and for some of your own experience with helping an aging parent. Over four years of classes with you in Writing Through the Rough Spots not only helped me through my darkest hours, but continues to help me generate fresh material from new perspectives. I’m forever grateful for your skills as a teacher and your kind heart.

  • Lynne Taetzsch

    We make too many people suffer needlessly at the end of their lives with medical intervention. I’m so glad my husband (and I as well) made a very clear living will. It helped the rest of the family understand at the end when he just wanted to let go. I will be forever grateful to our Hosicare here in Ithaca, NY. Thank you for your mother’s story, Elaine, beautifully written.

    • Elaine Mansfield

      Thanks so much for your comment, Lynne. Hospice helps us sort out and follow through on these directives. My internist and family doctor helped Vic and me before I was involved with Hospice with exact detailed wording of my medical directives. So important, and then the person who is health care proxy has to do their part. Dying is complicated in this law-suit culture, but it’s possible to make our wishes known and have the hard talks with those who will make the decisions when we’re not able.

  • GR

    Thank you for your heartfelt beautifully written article. As a physician who often treats patients with dementia, it is so helpful …and moving…to see the story from the family’s perspective.

    • Elaine Mansfield

      It’s wonderful to hear from someone who has to make decisions from the medical side–and the human side, too. I’m grateful you’re moved and find my piece helpful. Thank you.

  • Mary Steffen

    I am going thru some situations with my older parents, mom 91 Dad 95. Until one month ago
    both were in good health, above average for their age. Lived in their own home. Little visitation from one daughter. This one daughter decides it is time for mom to be out of the
    house, separated from her husband. Note this daughter is in the medical field. Nurse practitioner. she took it upon herself to file for an ETG. And got It. Mom was away by
    this person who mom has never met. 12 days later, she files another ETG for our father
    who was suddenly removed from his own abode on a Friday night @ 6 PM to an undisclosed
    location. Prior to taking him, she removed me from the home (as I was living there caring for him, changed the locks and rummaged through his personal belongings as he sat there all alone and frightened. While she was in another room he got to the phone and called asking
    me to call the (city) police to determine who these people were. I advised him she was there
    on an emergency petition. But he is taking me away ! he retorts. There are two other people here, Where are they taking me ? I was crying so hard, I could not respond. I did receive a phone call late the following day from this woman who claimed to be his Guardian.
    She did not disclose his location and advised me I could not see him.
    Needless to say, I was exhausted from being up for 36 hours and calling all over the place
    all night which was fruitless. Now it is already 14 days later, And I am told by this so called
    guardian that I cannot see my parents until the first trial date which is still another 20 days away. I am horrified that this can happen in America. Prior to this date (removal) my
    father was ambulatory, could balance his checkbook, knew days and dates. Prepare meals. Now I am being told by this so called guardian that he needs her: He is babbling,
    does not know where he is (of course) as he is not being told these things. Stating: He is confused. My sister who was participating in finding him (still do not know his location)
    for these past weeks, had an anyuerism and is in ICU under heavy sedation.
    Where is the code of ethics here. I just cannot believe someone can take your parents away. I have a huge knot in my stomach, cannot work or eat. My business is suffering
    as a result of this. It is like your child has been abducted. Does anyone have an answer for me. I am begging for help.

    • Elaine Mansfield

      Dear Mary, how difficult and harsh this sounds. I am definitely not the right person to ask. Like Susan, I don’t know what an ETG is. It must have to do with some sort of emergency removal for protection but I couldn’t find a definition for the acronym ETG that fits your meaning. In any case, I would go to a local office of aging or call an elder lawyer. I’m sorry I can’t help and I’m sorry you’re suffering in so many ways. Not sure if anyone on these comments can help, because this sounds legal and technical, but you might send a note to the editors of Alzheimers.net and ask them if they have ideas. Again, I’m so sorry about this terrible situation (and so sorry I didn’t respond to your distress sooner. I have been away from my desk with family and also didn’t know there were more comments accumulating because there hadn’t been any new comments for a week as of Friday.)

  • Lynne Edwards

    Thank you for sharing your journey. I was glad to hear that you asked the doctor the “right” questions: “if it were your mother.” I am a nurse who has worked with the elderly, cared for my mom in our home until she died, and now have my father-in-law, who has dementia, living with us. So many in our society hide from the truth that we will all die and so the right discussions often don’t occur until it is too late. As people like you share their stories, hopefully everyone will understand the importance of making plans before the emergency.

    • Elaine Mansfield

      Thank you, Lynne. So much care-giving in your life. There’s been lots in mine, too, since my husband died one year after my mom. There was one overlap year in their illnesses, but by then my mom was at peace. I hadn’t planned that question to the doctor, but it erupted out of my heart and it seemed to me that what we needed was to protect her from unneeded suffering.. She was terrified. I’ve made my wishes clear legally and in talks with my sons. It’s essential to do that, and I think it’s a great gift to one’s children to make these hard decisions and not leave it to them.

  • Susan

    Is there any reply to Mary Steffen’s comment? What is an ETG? Is there any help out there for Mary and her situation?

    • Elaine Mansfield

      I’m sorry, I’m just getting to these comments. There was no change in the comments for many days and suddenly a flurry. I had my family visiting on the weekend, so didn’t realize I needed to keep watching. Glad to be responding again.

  • Carol

    I am doing the same thing for my mother right now thank you for you story it has help me to see that I am doing the right thing for my mother by placing her on Hospice.

    • Elaine Mansfield

      Carol, I’m so glad this helped you feel better about your wise decision. I’ve made my end-of-life choices absolutely clear with both my sons so they won’t keep my body going unnecessarily if my mind is gone.

  • Mike McNear

    Hello Elaine my name is Mike and I understand completely every thing you have been through with your Mom. I am a 32 year caregiver for my 94 year old mother. She has been fighting the Alzheimer disease for over 34 years. She still continue to fight along with the support of me and God. This is the greatest challenge of my life to continue too support my loving mother on this journey. I believe the blessing of this journey was not so much for my mother but for me to see the love and grace of God in myself. I can now say my living has not been in vain. My thoughts and prayers will be with you and everyone who must endure our life experience.

    • Elaine Mansfield

      Mike, you’re receiving one of life’s essential lessons–how to be a compassionate human being. Thank you for opening your heart in the way you have and acting on your beliefs.

  • Arlene Kitchin

    Well, this is crude, but an old lady in Nova Scotia where I grew up, once said of a terminally ill relative, “If she were a horse they’d shoot her.” We do tend to let our old people suffer and put our animals out of their misery. Not suggesting we shoot anyone, but should let them die gracefuly and naturally.

  • Bill Kay

    When they can only speak in a whisper what stage is this ?

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