It’s black on white – June 30, 2006 – the date on my mother’s death certificate. Even though she has been deceased for ten years now, Mom is very much with me in spirit today. I feel so blessed that I was able to be present when she passed away in the emergency room of a local hospital.
As I wrote in my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, “The images of her lovely, sweet toothless smile, her gentle spirit, and her last peaceful breath continue to stay with me” (p. 105). I learned so much from her throughout my life, but that day the lesson for me was not to be afraid of death!
My friend, Father Tom Schroer, S.M., Ph.D., had a similar experience with the death of his mother. He vividly remembers his mother’s last day of life, Saturday, March 24, 2007. In her fragile bedridden condition under hospice care in a nursing facility, his mother called each of her four children by name to hold her hand. Fr. Tom recounts it this way: “Taking my turn, I and my mother gently caressed each other’s hand for several minutes, without a spoken word – just the exchange of warmth and tenderness. It was a moment in time that I can still recall and feel deeply and gratefully whenever I want to return to that bedside image.” It is his mother’s “final gift” of warmth and tenderness that he continues to “unwrap” whenever he wants to recall that blessed exchange.
Alzheimer’s is a progressive and terminal disease that cannot be reversed. In 2015, it was the sixth leading cause of death. Alzheimer’s is a disease of the brain, but not the spirit. In the final stage of the disease your loved one usually can no longer communicate verbally. They are totally dependent for all their care, and for you to advocate and attend to their personal needs. There are still many opportunities in the last hours to connect with your loved one and honor their spirit and life.
It is important that we, as caregivers, ensure that our loved ones have a “good” end-of-life when that time comes. Our tasks at this phase of their life’s journey must be one of attentiveness, and creating a soothing, peaceful atmosphere, no matter if they are at home, in an assisted living/nursing home, or hospital setting. It can be an opportunity to experience deep intimacy. Hopefully, prior to this time you were able to put plans in place for their end-of-life wishes and desired medical care.
How can one tell when it is near the end of life with a person with Alzheimer’s or other form of dementia? There are symptoms of later-stage dementia that can signal when a person is near the final stage of their illness. It is best to consult a family physician or hospice worker to diagnose this, but several symptoms include:
- No speech, or limited speech to single words or phrases that may not make sense;
- May sleep more during the day;
- Inability to walk or stand, problems with sitting up, and become bed-bound;
- Bowel and bladder incontinence;
- Decrease in appetite;
- Need help eating and may develop swallowing difficulties;
- Weight loss;
- Need help with all facets of daily activities;
- Reduced ability to understand what is being said to them;
- May develop infections such as urinary tract infection or pneumonia.
Even though their spoken language may be severely affected, your loved one may still use non-verbal communication and behavior to show their needs and feelings. Doctors tell us that even when they can’t speak or smile, their emotional memories remain. “Even if your loved one’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains,” notes Harvard Health Helpguide.org. While they may not be able to remember what you said, they can remember how you made them feel.
Here are a few things that you can do to make their end-of-life as comfortable as possible:
- Surround them with pictures and mementoes.
- Play their favorite music.
- Read aloud from their treasured books.
- Give them hugs to reassure that you are there for them.
- Hold their hands, gently stroke their arms, massage their arms or feet.
- Reminisce about life stories that bring comfort.
- Brush their hair.
- Check if they are in pain by looking for signs, such as facial expressions (grimacing), body language, crying, agitation.
- Continue talking to your loved one, even if you don’t think they are following what you are saying. They may still understand at some level and respond to the tone of your voice.
- Be willing to say goodbye and give them permission to “go.”
- Provide for a chaplain or spiritual leader of their faith community to visit and minister to them.
Meaningful connections like these will help you meet your own emotional needs, as well as your loved one’s. Share the list above with family members or friends who may be reluctant to visit because they don’t quite know what to do or say that could provide comfort.
In their book, Final Gifts, hospice nurses Maggie Callanan and Patricia Kelley give examples how the dying leave behind gifts of wisdom, faith, and love for their loved ones to recall and carry close to their hearts. Being in the presence of a dying loved one can help us face our own mortality and teach us important lessons for living. Jade Alexander, author of Where Two Worlds Touch, describes her mother’s “final gift” this way: “Mom taught me how to love with my whole heart, how to organize my life around what really matters, how to be a good person, and how to accept and appreciate what is.”
“Unwrapping these ‘final gifts’ enables us to begin the healing and transforming of the incredible pain and sadness experienced with the loss of our loved one,” notes Fr. Tom. The “final gifts” empower us to begin to establish a new connection with our loved one. St. John Chrysostom, an early Christian writer, wrote: “Those whom we love and lose are no longer where they were. They are now wherever we are.”
I wish you peace, courage, patience, and joy in your caregiving today and every day!
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Many thanks to Fr. Thomas Schroer, S.M., Ph.D., for sharing his experience and thoughts to use in this blog.
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Dementia trainer and advocate, Teepa Snow, talks to a group of caregivers about “Letting Go at the End of the Disease” in this short video: https://youtu.be/mNJxq4J5kYY.
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Dr. B. J. Miller is a palliative care physician at Zen Hospice Project who thinks deeply about how to create a dignified, graceful end of life for his patients. Take fifteen minutes to savor this moving talk, which asks big questions about how we think on death and honor life: https://youtu.be/apbSsILLh28.
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Create a personal website to share updates about a loved one’s health journey by going to: https://www.caringbridge.org/how-it-works.
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Take a few minutes’ break to listen to this beautiful rendition of the songs “Amazing Grace and My Chains Are Unbound,” by the Brigham Young University Singers: https://youtu.be/X6Mtpk4jeVA.
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