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An Interview with Nancy Hassett Dahm, Author of Mind, Body, and Soul: A
Guide to Living with Cancer. ( By Caregiving.com , March 2001 ).
Q. Families so worry about the unexpected when they care for a terminally
ill family member, especially because, as a society, we've done so little
education about the dying process. Can you explain the dying process? What are
the physical changes to the body during the last weeks and days? What about any
emotional and/or spiritual changes?
A. Families do worry about the unexpected when caring for a terminally ill
family member. This is natural, given that there is little published information
on how to give care. Families are confronted with tremendous grief over the
impending loss. Yet, they will have to care for their loved one, and watch the
dying process despite that grief. However, it is a time when caring for a loved
one at such a stage, is an opportunity to give and receive much love. Everyone
fears the dying process. But that fear can be mitigated once everyone
understands what is happening.
Let me explain. The dying process is not one process that occurs, but many.
It is unique to each individual - not everyone dies in the same manner. There
are many similarities though. A person who is approaching the terminal end
stages of an illness has more control over the process than most would think
possible. There are many variables which when implemented, could contribute to a
more "acceptable" process - a process that is determined by the
patient with the help of professional caregivers and family members. These
variables I speak of, have to do with the patient's environment, the caregiver
situation, comfort measures employed, pain management, fluids, mouth care,
bathing, and overall attention to the most seemingly trivial details. All these
things are vital in ensuring that the dying process is as comfortable and stress
free as possible. This process can either be wrought with apprehension and
struggle, or it can be a peaceful passage - it depends on the choices that are
made. The physical changes that occur are many and vary from patient to patient.
In general terms, this is what happens:
I have defined essentially three stages of the dying process. The first stage
is The Initial Stage. This is the first perceptible change in a person's
condition that occurs suddenly and is quickly followed by a rapid decline. This
Initial Stage begins with a marked loss of appetite, rapid weight loss,
increased muscle weakness, possible increased pain, agitation, anxiety and
possible depression. Signs and symptoms may also include nausea, vomiting,
dehydration, extreme fatigue, and sleeplessness. The patient will look different
to you. He or she will appear pale, drawn, and have a general lack of interest
in everything, and everyone.
The second stage is The Plateau Stage, where there is a period of stability
in the patient's condition. This stage can last weeks, or days. The third stage
is The Imminent Stage. Signs and symptoms vary, and may include all or some the
following: confusion, loss of bowel and bladder control, restlessness, increased
agitation, bluish color in the nailbeds, hands, feet, difficulty in breathing,
possible bleeding and possible coma. Emotionally, most patients become "an
Island unto themselves". They withdraw from the family. This does not mean
that the person ceases to love the family. I believe this is a time when the
patient is preparing to make the separation. Your loved one is half in this
world, and half in the next. It is a transition that is gradual, and many
patients are self absorbed in their " work". It is important to remain
near your loved one, gives words of reassurance and love. Provide support.
Spiritually, patients draw nearer to their faith at this time. Even if your
dying loved one never uttered a prayer or was not " religious", offer
prayers and spiritual support. Your loved one will most likely very gladly
accept.
Q. When a loved one is dying, family members also worry about doing the
wrong thing. Can you alleviate this worry?
A. Family members always worry about doing the "wrong" thing. This
can result in doing nothing at all and can have devastating repercussions for
the patient and family. This worry can be mitigated by understanding that there
is no real right or wrong way to give care. The only "wrong" thing
that can occur is not giving of yourself to your loved one. Don't be afraid.
When you give loving care, you give good care. Just think in terms of what you
would want done for yourself.
Q. Often, doctors and families wait until the last few days to contact
Hospice. They feel Hospice is "giving up" and only for when there is
no hope. But, Hospice can make such a huge difference for the patient and family
if contacted as soon as a terminal illness is diagnosed. Can you offer insights
and advice to families about how important this is?
A. Hospice is a wonderful resource for families in need of caregiving
support. Many people wait too long before calling them. People fear the word
hospice, because to many, it signals "the end". But that is not
necessarily so. Hospice is there to give comfort during your greatest time of
stress. They focus on how to live well with the remaining time. There is no too
soon - there is always a too late. Families deserve dignity, comfort, relief of
stress, and resources to help in coping with this major event. Hospice can do
that for you. It is all about getting beyond the fear.
Q. When you think of the phrase "Dying Well", what comes to
mind? What experiences and stories can you share?
A. Dying well is dying at home, pain free. As I wrote in Chapter 5 of my
book, I call it "Spare Me".
To me, dying with dignity means sparing me the humiliation of crying out in
pain, writhing in bed, and having to beg for help from those who can't or won't
help. It means sparing me from the routine of loud hospital noises,
indifference, closed doors, and unwelcome remarks from strangers who cross the
dividing line between chaos and peace, a line now drawn at the edge of a
hospital bed. Spare me from prying strangers who are merely satisfying their
curiosity, and not showing concern. Spare me from those who would snap the
covers away from me to give me a cold bath with cold hands. Spare me the
indignity of dying alone without the hands of the ones who know and love me.
Spare me the indignity of dying in a place where no one knows my name. Dying
with dignity is to die at home, where you are loved, and cared for with love. It
is a place where you can die where you have lived. Home is where your heart is.
Dying with dignity is dying at home. This is dying well.
Q. Tell us about the spiritual aspect for the patient during the dying
process. How can families tap into this and use it effectively?
A. The spiritual aspect for most patients who are dying is a very important
part of caregiving. But, they may not ask for spiritual help outright. It is up
to the family, and friends to brave this most important part of dying. Many
people are embarrassed to bring up the subject, or think that the dying person
doesn't need it. This is an incorrect assumption. Most patients really want and
need that spiritual support. They need to feel that they are going to
"their" God. They need the reassurance of their faith. This is what
helps people to die in peace. Talk lovingly to your loved one and ask what he or
she wants. Ask if they want a rabbi, priest, or minister. Read to them. Talk
about a loving God. Offer them their old prayer book or something that has
spiritual significance for them. You will be doing them a great service in
helping them through their fear, and yours as well.
Q. How do you plan to "die well" (i.e., how do you envision your
last weeks and days)?
A. I envision my last weeks and days at home, surrounded by the ones I love;
my children, husband, sisters, and brother. I want time to prepare. I want soft
music and low lighting, and I want a calm and peace to fill the room where I
lay. I want my God near me, and if He can't be there, then let angels come and
sit by my side, smiling. I want death to be on my own terms. I want to decide
when it is time. I will go when I am ready, but not before I say, "I love
you".
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