6 Important Skills for the Living When Caring for the Dying

caring for the dying
Photo by Chris Marchant

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“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.

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