Dying with Dignity

The topics of dying and death have long been taboos. It often
makes people uncomfortable to be around those who are sick or
those who have experienced the loss of a loved one.
This is most likely because, when confronted with the reality of
death, it makes one examine his/her own mortality or the fact that
its possible he/she could lose a partner, a child, a parent, etc. And
most people dont want to think about those possibilities and, in
the case of elderly parents, probabilities. Consequently,
discussions on how you would like to die are not being initiated.
Im assuming most are like me and would like to die with their
dignity intact. Having watched my Alzheimers afflicted mother
have to cope with just the opposite has made me open a
conversation about what I specifically envision for the end of my
life and to make some decisions (and share them with family
members) while I am still capable of doing so.
A Living Will, which can also include a DNR order (Do Not Resuscitate), sometimes does not
provide enough direction. Thats because family members may not possess all the pertinent
information, as well as only being human so they sometimes let their emotions get in the way of
making the right decision.
For example, although my mother had both directives in place, I inadvertently rescued her because
I didnt understand the ramifications of the procedures instituted during her last hospital stay.
She was admitted to the hospital for a urinary tract infection (UTI), which is quite common in
elderly adults. This wasnt her first UTI, and usually a course of antibiotics cleared it up quickly.
This being my prior experience, when the hospital told me that they put her on intravenous
antibiotics to quickly get it under control, I agreed with their course of action. When after two days
sepsis started in, with pneumonia starting to rear its ugly head too and the UTI still not under
control, I consulted with her family doctor. With his guidance, it became clear to me that
continuing treatment was actually going against her wishes. At that point, we decided to stop the
antibiotics and bring her to her care home to die in familiar surroundings. She surprised us though.
She did better without the antibiotics, which, unbeknownst to me, often happens with Alzheimers
patients. However, she was still devastated by three consecutive hospital stays and could barely
speak or keep her body upright. More importantly, she had lost her will to live.
I watched her suffer emotionally for three more months before she passed. Saddened and
frustrated, I wrote the following plea for her.
The lesson to be learned is that, despite feeling uncomfortable, its important to begin end-of-life
discussions and to address your feelings on how you want to be treated so that you may die with
dignity.

Dying To Die
Ellen Gerst

For the past decade, I have been the health advocate of my now 95-year old mother. After initial
concerns, I moved her from her own apartment in a different state to an independent living
community close to me. Along with an Alzheimer's diagnosis came more moves: to assisted living
and, now, to a memory care unit.
Over the course of the years, with illness, broken bones, and incidences of depression and paranoia,
my mother has always said, Im not ready to go. I want to live a little bit longer.
As long as my mother felt that way, I believed it was my job to facilitate the best quality of life I
could arrange for her. This included remaining on top of her health and personal care; making sure
that she was receiving proper services from the facility management where she lived; arranging
and attending enrichment activities with her to keep her mind alert; arranging for extra help when
needed; and all the many other tasks that go along with tending to the well-being of another person.
Due to a recent series of hospital stays, her health has taken a turn for the worse and so has her
attitude towards living. Now, every conversation I have with her, she lets me know in no uncertain
terms that she is ready to go. She has clearly stated that she wishes to die and that how she is living
is not fit for anyone. After uttering these statements and the like, she plaintively asks, Will you
help me?
This being the case, as her advocate, I believe its now my responsibility to facilitate her graceful
and dignified exit from this world. Dont misunderstand me; Im not taking matters into my own
hands. However, I certainly want to do everything in my power to help her, which includes making
sure she doesnt experience any physical pain. Unfortunately, curbing her emotional pain is not so
easy a fix.
Some might call it unfortunate that my mother lives in a facility where it is difficult to die
especially when the residents have no discernable quality of life, no family or friends that visit,
nothing to which to look forward, or have any chance of recovering from their impaired physical
and mental state.
You have to give this facility credit. Some residents have lived for ten plus years simply because
they are so well-cared for. This is wonderful, and its exactly what attracted me to it in the first
place when my mother wanted to live. Now that she wants to die (and has expressed the terms
in her Living Will), its a little bit more of a conundrum.
For example, in this facility, the residents receive four meals per day: breakfast, brunch, lunch and
dinner. The servings are plentiful and seconds are always available along with as many desserts as
desired. Many of the residents arent able to feed themselves. They sit at the dining room table
propped up in wheelchairs, half comatose or dozing off and hardly able to keep their heads up.

Yet, the caregivers sit next to them and spoon pureed food into their mouths four times a day. My
mother looks around and sees this and tells me she doesnt want to get to that point.
She is brought to the dining room for every meal and offered food, which she is capable of feeding
to herself. Sometimes shell eat, and other times shell push it away. The first reaction of the
caregivers is to cajole her into eating or to even pick up the utensil and offer to spoon feed her.
Moreover, if she hasnt touched her food, they are quick to offer a supplement such as Ensure. Ive
asked them not to do any of those things. There should come a time in ones life when you can
decide whether you want nourishment or not. For my mother, if 95 is not the number, I dont know
what is. Furthermore, if all you want is ice cream for a meal, then thats what you should have!
My mother also wants to sleep more than usual now. Im sure shes tired of the same activities and
the effort it takes to participate. I believe youre allowed to be tired at 95 and decide what you
want to do or not.
She can no longer dress, toilet or shower herself. She has a bed alarm to prevent falls, so she cant
even arise from her bed without someone coming to assist her. Despite the caregivers supportive
attention to these details, dealing with these things is especially difficult for my mother because
she has been extremely healthy and fiercely independent her entire life. Accordingly, never mind
keeping her sense of dignity, she dislikes having to depend on others in order to be able to complete
the simple daily tasks of life.
With enough of her faculties still intact, along with an innate deep knowing which I dont think
evaporates with dementia, I believe she has decided that the way to avoid the indignities of life
from which she can no longer escape is by slumbering away the day and night. And she longs for
that eternal sleep, which will finally release her to a better place.
It is agonizing for me to watch my strong and usually stoic mother in so much emotional pain and
to hear her pleas for me to assist her in being able to leave this life.
While I agree its terrific that modern medicine has enabled people to live longer, I also believe
there is a time when its correct to intervene and when its time to turn the ultimate decision over
to God.
In comparison to many others her age, my mother has been lucky and led an amazingly healthy
and long life. When her quality of life has deteriorated to a point of no return, and with a health
directive in place, I believe we should let nature take its course. My mother is dying to die. Can
we please just let her?
My mother passed away on May 4, 2015. She slipped and fell and, although she didnt break anything, her
frailty and desire to go was evident when after a day and a half she slipped quietly away.