6 Important Skills for the Living When Caring for the Dying

caring for the dying

“I am the midwife of my mother’s death”

That’s the title of a poem I wrote a few months before my 81-year-old mother had a stroke and passed away. I wrote it because I felt responsible, yet helpless, to ease her pain as her body became less reliable, her thoughts less coherent, and her resolve to continue living began to fade. Since being diagnosed with congestive heart failure, my mother had become increasingly dependent on me to help her manage the routines of life that sustained her and brought her joy – grocery shopping, swimming weekly at the gym, visiting my house once a week, or going to the doctor.

This is the story of what I learned about dying from the final months, weeks and days of my mother’s life.

The Stroke

When the stroke finally came, it was not a surprise. My mother had insisted on taking herself off her blood thinner ten months prior, and her “compliance” (the euphemism Western medical doctors use to refer to a patient’s willingness to adhere to their regimen of life-extending drugs) was sporadic with her other medications. My mother had given my sister and me her advanced medical directive twenty-five years earlier, instructing us that no extraordinary life-sustaining measures be performed on her such as tube feeding or resuscitation. I’m just not sure she had really thought through the slow physical and somewhat more rapid mental decline she was in the midst of experiencing prior to her stroke. Perhaps by not taking her medications regularly, she was actively trying to end her life sooner. Certainly, she knew what she was doing and the stakes she was playing. Aging was a slow and tortuous process, and it was wearing her spirit down. In some strange and backwards way, it was almost a relief when she had a stroke. It was as if she had known it was coming.

The Hospital and Then Hospice

My mother spent three days in the hospital, gradually deteriorating. A CAT scan showed irrefutable evidence of a stroke slightly larger than the size of a quarter affecting her temporal and parietal lobes. After a seizure on the second night, she lost her ability to speak completely. She no longer opened her eyes, couldn’t swallow or sit up. It was at this point that she stopped responding to us by opening her eyes when we spoke directly to her. She seemed to retreat into another world. It became clear that our goal was to maximize the quality of my mother’s remaining days, so we decide to move her into a wonderful in-patient hospice center right across the street. It is a small 16-bed facility that is one of only two in the entire state. We were incredibly fortunate to be offered a bed. Throughout all of this, the hospital staff was nothing but wonderful. I think they knew by the second day that my mother’s prognosis for recovery was not good, but they allowed my sister and me to come to that realization ourselves, never pushing us to make any decisions before we were ready.

As we moved from the hospital setting to hospice, time began to slow.  My mother was unhooked from her IV and machines, and the focus of the hospice staff and her medical care became making her as comfortable as possible. It was also, I think, on making my sister and I as comfortable as possible with the idea that my mother, at last, was truly dying. There was no more theorizing, trying new doctors or new medicines. This was when the three of us, together, truly began a magical six days. It was like the passage in mythology on a boat, on a broad and tranquil river, down, down, into the depths of the earth. It was a twilight underworld, but not in a bad way. I saw images in my mind late at night of a barge, a sunset, calm and glassy water, and a slow, majestic glide into darkness.

The Final Week of Transition

Through the last days we spent with my mother, as she lay unmoving on the bed under a quilt made by volunteers, my sister and I read to her, talked to her, brought her flowers, and sang to her. We played music, and sometimes, in the night, we just held her hand and listened to her breathe.

During this time when everything in the outside world was set aside, a deep sleep was not always possible for me at night. The volunteers and technicians came in to turn my mother every four hours so she wouldn’t develop bed sores. My sister and I switched off sleeping at the hospice center. It was like I was in another world at times. I felt I had been invited to enter a most sacred place of transition. This was not the transition of birth, which is a violent time of pain filled with the unbearable need to move things along. This was the transition of death: peaceful, loving, and full of visions.

As I held my mother’s hand, I spoke to her of the things I saw. Especially at night, I could more easily let myself enter into the experience, to cross into the twilight between the living and the dead.  Although she was silent, I felt my mother’s presence as if she and I were at one end of a great long corridor. I could see down the generations forward through my children and their children and their children’s children. I could see backward to my mother’s parents, and grandparents, waiting for her to join them. I could see my mother. She was a little girl again, blonde-haired, talking to herself, wandering in the flowered fields of Bavaria, playing with her dolls as she had described herself many times. All of this and more I spoke to my mother about, and she listened. At least, I thought she listened.

I will never forget the experience of watching my mother transition from life to the universe beyond. It has taken the fear of death away for me. This was the last gift my mother gave to me. Eventually, she drew her last breath and her heart stopped, with me and my sister at her side, her eyes peacefully closed and her face relaxed. It was sad, but it seemed normal. It seemed this was how life should end. Every the planner that she was, my mother had made her own death conform to her wishes, even as she lay comatose. She died even more forcefully than she lived: at peace, without pain, with dignity, and fully in control of the situation.

The Six Things I Learned And Tried To Practice

Here are the things that helped me the most during this time, starting a year and half ago when my mother first become sick from her congestive heart failure. Especially in her final days, these principles gave me solace and continue to help me think of my mother’s death – not just her life, but her death – as a positive experience.

1. Knowledge

My mother was a voracious reader of alternative health newsletters, and although I cannot recommend all of them, they allowed her to form her own opinions of her health care, to talk intelligently with her doctors, and to make decisions that were best for her. I admired her fierce intelligence and opinions. I also learned as much as I could about her conditions online and directly from her doctors, which helped me to anticipate the likely path her body would take in its final months even as her mental state declined.

Knowledge was also my solace and helpmeet in the final days. The hospice center where my mother spent her last week was an amazing place. Everything, from the layout of the building, the gardens, the room setup, to the wonderful staff, was designed to maximize the comfort of the patients as well as their families. This place, which deals with death every day, was a fountain of support and resources. In particular, there was a 10 page double-sided paper handout we were given that I have read and re-read, even since my mother’s death. It explained in matter-of-fact, non-religious yet spiritual terms the need for alignment between the body, mind, and spirit necessary to allow someone to die. It gave example scenarios of how people chose to communicate their wishes, it described the physiological signs of nearing death, changes in the appearance of the body, and common actions and words of the dying. It suggested ways to speak with and touch the dying gently, so as to comfort them, communicate with them, and help them transition.

2. Planning

My mother was a planner. She had written her will, her advanced medical directive, had a medical power of attorney (me), and a general power of attorney (my sister) designated years ago. More importantly, my mother had not shied away from discussing her wishes in regards to her final days. We knew what she wanted, and what she didn’t want done in the event she was rendered unable to speak for herself. As this was what did, in fact, happen, it was a relief not to have to agonize over important decisions about her care, second-guessing or speculating about what she might have done had she been conscious. My sister and I both knew – we had heard it many times from her. My mother’s paperwork, so to speak, was in order. You might say she was very German in that respect – organized, prepared, and forthright. She planned ahead so we didn’t have to do much but fulfill her wishes.

3. Communication

As my mother was rendered increasingly speechless by her stroke, communication with her became more subtle. It was the wrinkle of her brow, the squeeze of her hand, a moan that told us she didn’t like being moved around. Communication between my sister and me became critical, as we rallied the grandchildren to come and make their last visits, and as we coordinated with medical staff and each other. Honesty and straightforward expression of any doubts or fears was critical for my sister and me and our relationship. There was no time or emotional space for miscommunication, anger or resentment. The gravity of our responsibility to do what was right for my mother gave us the strength to speak honestly with each other and about things we might see differently, few as they were.

We called my mother’s lifelong friends in New York and Germany and encouraged them to speak to her on the cellphone. We called her cousin in Canada. Even though she could make no response, we encouraged people to speak with my mother normally, and we talked to her as well.

The hospice staff was skilled at answering questions when asked, but also at withdrawing and giving us as much time as possible to be with my mother. They were never intrusive and always respectful of our feedback and requests, whether to delay or accelerate pain medication, or to forgo routines that seemed pointless at certain points, or seemed to cause distress.

We communicated with my mother in many ways in her final days. It was important to us that she never feel she was alone, and someone was with her at all times. We knew she was afraid of dying alone, as her own mother had – something she had felt guilty about the rest of her life. We communicated by talking, reading, singing, and touching, and we made sure my mother knew she was not alone.

4. Flexibility

There were times that we had to modify our actions and decisions fairly quickly during my mother’s final days. She deteriorated rapidly in the hospital. We had originally planned to bring her home to my house with in-home hospice, but when we saw how much physical care she needed, we gratefully accepted the offer of an in-patient hospice bed. We made decisions about who in the family would stay where and when, who to call, and who would be able to support us as we suspended our outside lives. When my own daughter became sick and could not come to keep my sister company as I flew to Boston for a few days, my nephew came up for 36 hours to keep her company. It was all very fluid, and many people supported my sister and me so we could have the time together in my mother’s last days.

As my mother continued to cling to life, waiting to die until I returned from my trip, persisting without food or drink for over 9 days, we accepted that there was no clear roadmap for this experience. We had to take each day, sometimes each hour, as it came. We adjusted medications to keep her comfortable. We allowed the process to unfold.

In this way, the metaphor of childbirth is accurate. There is no set way that death comes. You cannot know when the exact moment will be, and you cannot hurry it or delay it. My mother had made things as easy as possible by preparing for her own death, but in the end, it was not a predictable process.

5. Acceptance

In the beginning of her hospitalization, when it became clear my mother could not swallow or talk, and thus could neither eat nor tell us what she wanted, I proposed the idea that perhaps we should feed her with a tube. Although she had said she did not want life-extending measures, I thought at first that recovery might be possible. Certainly, she would not have the ability or chance at recovery from the stroke if she died of starvation. But my sister pointed out that my mother was a terrible rehab patient. She could be rude when frustrated, certainly she was impatient and did not handle pain well. She simply didn’t have the positive outlook required from someone who would benefit most from the slow and painful process of rehab and recovering from a stroke. Not being able to speak or read (it seemed even her ability for visual recognition was severely impaired) would have left her in a twilight state, locked in her own body, unable to communicate with the fluency she was accustomed to. I finally accepted that my sister was right: my mother did not want to be fed, she did not want to be forced to go through rehab and live in a nursing home, perhaps for the rest of her life. With this realization, the rest of the process became so much clearer and easier.

6. Love

Finally, the most important thing I learned was that love made everything bearable. I reminded myself that, even when my sister and I had slight differences of opinion or approach to my mother’s care, we both loved her and wanted what was best for her. It was far more important to agree with each other and be united than to argue for the sake of being right. With my mother leaving us, we are now all the more united in our love and respect for each other. I know it is not always so for other families, and I am grateful my sister and I have become closer, not further apart as a result of my mother’s death.

I loved my mother unconditionally as she lay unmoving in her bed. I was able to put aside all the irritation with her that had plagued prior months. I was also able to forget long standing hurts from my childhood, from her role as a mother in relation to me. She simply became that little girl, the person who was my grandparents’ child, my children’s grandparent. She was a remarkable person who had lived a long and productive life, accomplished many ambitious things, loved deeply, and cared for me my whole life. I could admire and love her for who she was, and forgive her for anything she might ever have said that hurt me. I knew she loved me, and she knew I loved her. And after all, in the end, that’s what life is all about.

Photo by Chris Marchant

16 thoughts on “6 Important Skills for the Living When Caring for the Dying”

  1. This was an absolutely moving and beautiful piece, Solveig. The transition being peaceful, as opposed to the violence of birth. I am fortunate enough to have both of my parents present and healthy, for people in their 70’s. As much as I’m not looking forward to it, there will be a time when my wife and I will have to exercise the level of grace and compassion you and your sister have. Thank you for this “owner’s manual” on the transition process.

    1. I am honored and touched at your comments, Larry. My goal in sharing my experience was that it might help others, and you have given me that hope! It is such a forbidden topic, and scary for all of us – I wanted to tell people that it doens’t have to be all bad. I wish for you the best experience possible when it is time for your parents. Yes, it was peaceful, and not as violent as birth. For that I will always be grateful.

  2. Thanks for sharing your intimate, personal story. I agree. With Larry above on his points. It might be well for us all to read the booklet the hospice home gave you.

    1. Thank you, TJN. I agree 100%. I think I recycled that hospice booklet! I’ve been looking for it again lately… If I can get another copy perhaps I can figure out a way to link to an electronic version. It was a wonderful resource for me.

  3. Losing a loved one has never been easy. I am deeply touched by how you shared this experience. I pray God comforts you and continually decorate your face with smiles everyday

    1. Thank you very much, Hannah. I am grateful for this opportunity to share my story with people I have never met, and to have touched you. Thank you for your blessing! This article came from my heart, and it is good to know my words reached yours.

  4. Thank you for your beautiful words. I am struggling to deal with the decline of both parents, Dad is spiralling into dementia and Mum has cancer. Neither can support the other. I am just so tired.

    1. Dear Boccadice – My heart goes out to you. I am glad you liked my article. I hope that you find support in your journey. Since I don’t know where you are located, I cannot give you suggestions, but I know that many retirement communities in the US have respite “day care” services for people who are providing care for their older relatives but need a few hours of break. It is a huge and exhausting responsibility to care for one’s parents. I was fortunate to have just the one parent, but I know many friends who have two parents still living and it is a huge challenge when they cannot care for each other any longer, and it is left to one child. I wish you strength and hope you can reach out and find some help.

  5. Thank you. Since my father passed away almost two years ago, I am caring for my mum who is sick with Alzheimer and Parkinson (Lewy). I have no children but became ‘her mother’.

    I had left home at 18, and relationships were never easy between us, and between my only sister and me. My sister never left home, and at 50, is still depending on my parents to make ends meet. I would be so happy to declare that this situation brought us closer but it ain’t the truth. We have to work hard to be able to agree on even the smallest details about my mum’s as my sister sees my presence as an intrusion. But my father gave us both power of attorney and joint responsability of our mum and I decided that we would try to maintain her at home as long as this is not dangerous with the help of several caregivers.

    I am grateful to my father for his careful planning but my life has been turned upside down and I am mentally and physically exhausted even if I am not alone to care for my mum. I am also grateful to have a sister but never thought that I would become a parent with her as a partner. And this will not end tomorrow – could be years.

    I was ill prepared as we are trained for birth but not for death.

    Your article is rare because you are honest about the challenges and you are mentioning that disagreement is possible even with loved ones. Thank you because they are too many lalaland articles around.

    1. Nathalie – I can relate to your experience. I think it is so important that we acknowledge that dying is a part of life. I believe in the value of sharing our experiences so we can learn from each other – expecially the parts that are not all “love and light”. I know fully my experience could have been much different – longer, more draining, and full of conflict. I know it happens in many families. And yes, we had our own moments. People rarely talk about the messy parts though, and I think that is shame. Family dynamics are complex, and the death of a parent always brings things to the surface. My hope is that you can work things out with your sister, and that you can be honest with her and yourself about how much you can give. You can only give what you can. One thing my sister and I both realized through the experience of my mother dying was that our relationship was about to become so much more precious because we were all that would be left. My mother was not going to be there for me or for her. We could bend, we could compromise, we could let go of having things “our way,” even if we thought we knew what was best. Being united in our decisions became more important than being right. In that way, my mother gave us a last gift: the gift of bringing us closer as sisters. I love your analology of becoming a parent with your sister. It’s very apt – except you didn’t choose that role! Being a parent is frustrating enough when you choose your co-parent. I wish you strength and hope in your journey and healing.

  6. Thank you for this article Solveig. I work on a cancer unit and come face to face with death everyday. However, when it comes to my mother passing, and I know the time will come, I just can’t bear the thought. It can make me cry just thinking about it. I love that woman so much! Honestly, I don’t really know how I’ll handle it, but reading your piece gives me hope. Hope that I too will be able to accept it and comfort her through the process. My thoughts are with you and your family. Once again, thank you.

    1. Thank YOU, Teri, for your comment. It brought tears to my eyes. You have without a doubt helped many many people in your job, and when the times comes, I fave faith that your experiences and training will help you deal with your mother’s passing. Of course it will not be the same, and of course it will be more painful and difficult. But you already have the most important ingredients needed – you love your mother, and you have a demonstrated capacity for great empathy and caring.

  7. Thank you Solveig for this beautiful, honest piece of writing. Facing death in the eye brings out the truth of who we are really are and you have coped with and shared this experience most honorably.

    Sharon x

  8. Thank you, Sharon. I am touched by your comment. It was my honor to be able to face death in the eye. To be with my mother at the end of her life was a privilege. She did so much for me – brought me into this world and cared for me, it was important to me to help her pass from this world with peace and dignity. I’m glad you enjoyed the article. Peace to you.

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