 End-of-Life Issues
Index
to This Chapter:
It’s never easy to talk about
dying and end-of-life decisions, despite the fact
that death eventually comes to us all. In our society,
with its insistent focus on youth and its discomfort
with any mention of death, even two people who have
shared much of their lives together may never have
discussed dying. When one of them receives a diagnosis
of a terminal illness, there’s suddenly a great need
to discuss many things they may have avoided or put
off.
From Denial
to Acceptance
The realization that ALS is
terminal also begins a hurricane of feelings, emotions
and reactions that very few people can be prepared
for. Reactions to loss are often described as progressing
through five stages: denial and isolation, anger,
bargaining, depression and acceptance. Few people,
however, pass smoothly through each of these stages.
As one caregiver put it, "Usually they occur
within a whirlwind of emotion, obscured by the constant
and overwhelming sense of loss and grief." Another
wrote, "Throughout these periods, waves of feelings
of all sorts — depression, relief, anger — seemed
to accompany distinct, if minor, changes in his ability
to take charge of his life." You and your loved
one may experience these feelings together, or at
different times. Being able to talk openly with one
another will help you both through this difficult
time.
In the beginning, denial can
be a positive force. We use denial to shield ourselves
from news too painful to bear, as we adjust inwardly
to our new reality. If it continues too long, however,
denial can prevent a person with ALS and his loved
ones from planning realistically for the future. When
a diagnosis of terminal illness is made, many people
justifiably seek a second opinion. But a long pursuit
for a different diagnosis, or a new miracle cure,
can be ways of trying to deny the reality of ALS.
Meanwhile, your attempts to help your loved one deal
realistically with what the future holds may be frustrated.
If your loved one continues
to deny the reality of his diagnosis, you can help
most by respecting his expressions of denial, even
as you try to avoid reinforcing them. Recognize an
expression of denial for what it is: a wish that things
were different. Don’t try to "break through"
your loved one’s denial, but don’t become a part of
it, either. Eventually the person in denial will move
out of this stage, and will then be ready to talk
about the future.
Don’t mistake hope for another
form of denial. Even as you face ALS realistically,
you need never give up hope. While ALS usually progresses
quickly, some people live much longer than the three-to-five-year
average. No one can say with certainty how long any
particular person with ALS will live.
Anger often follows denial.
As the primary caregiver, you may often feel the brunt
of your loved one’s anger. Try to remember it’s the
disease, not you, he’s angry at. When the anger becomes
too great, some people with ALS find relief simply
by shouting "I hate having this disease!"
This allows the person to vent his anger at its source,
rather than at someone close to him.
Acceptance is marked by a
passing of anger and depression; it’s a time when
the struggle is over. Like each of the other stages,
acceptance may come and go with each new loss. However,
acceptance is not the same as being defeated.
"We have come to believe
that life, dying and death are natural components
of the living process and should be accepted as such.
We feel very strongly that it is not the hand that
one is dealt but the manner in which one plays it
that really matters. We have accepted this hand and
decided to focus on living and not on the disease
process. As a result of this choice, we are embracing
life to the fullest while experiencing the hope and
preciousness of each day. We welcome fun, joy and
laughter and actively seek each of them at every available
opportunity."
An ALS caregiver
As the primary caregiver,
you, too, may pass through the five stages described
above. You may feel guilty for not being able to prevent
feelings of anger, or you may experience depression
and not know how to pass beyond it. Talking with a
professional counselor can often help a great deal.
"If you are the spouse
and caregiver of an ALS patient, has anyone told you
it is OK to think about and plan for the day when
your husband or wife dies? My husband said he didn’t
want to talk about those feelings because he thought
it would sound as if he were impatiently waiting for
me to die and stop messing up his life. He thought
that it would upset me to hear that he thought about
the things he would be able to do when I was gone.
He was shocked when I told him how relieved I was
to hear it! His refusal to discuss the future at all
had me fearing that he simply couldn’t see that there
was a light at the end of the tunnel for him. That
discussion eased my worries about him and eased his
guilty feelings about thinking that life will be easier
when I’m gone."
A woman with ALS
You may end up doing the best
for yourself and your loved one if you can discuss
with him or her even such troubling issues as the
one this woman has brought up if they should arise,
as difficult as it may be to do at first.
Hospice
Caring for a person with advanced
ALS at home can be tremendously difficult. Getting
home-care services through a hospice can provide you
with the kind of help you most need when you most
need it. (See "Getting
Help.")
Hospice care focuses on preserving
the quality of life for the terminally ill person,
and provides caring services for the whole family,
not just the ill person. A hospice can provide you
with medical equipment, in-home nursing care, social
services, respite care, bereavement counseling and
other services. Most hospice care is provided at your
home.
Hospice care is available
through Medicare, which requires a doctor’s opinion
that the person’s life expectancy is less than six
months, though coverage can be extended past that
time without penalty. Talk to your local Social Security
office for more details about Medicare coverage (see Resources).
"I was a one-woman
show here 24 hours a day with little help from family
for eight months. The days were long and the nights
even longer. Some days I forgot to brush ‘our’ teeth
and only remembered to do so at 11 p.m. My husband
never complained once and thanked everyone over and
over for all they did.
"I telephoned Hospice
on the advice of a friend. They were here within an
hour and within four hours we had all the necessary
medical equipment we needed. For two hours daily they
bathed my husband, shaved him and brushed his teeth.
I had a much needed break."
An ALS caregiver
Legal
and Financial Issues
ALS brings to the foreground
many issues that too many of us put off or avoid altogether.
With ALS, you and your loved one will have some time
at the beginning of the illness to discuss and plan
for the future. These discussions may become harder
if you put them off, especially if speech becomes
difficult early in the disease.
1. Make sure both your
loved one’s and your wills are up to date, and accurately
express your wishes at this time.
2. Review your insurance
policies. Make sure the beneficiaries you want are
named.
3. Review the names
on deeds and titles for all property. It may be convenient
to transfer title early to avoid problems or delays
after a loved one’s death. Consult with your attorney
or financial adviser first.
4. Discuss your loved
one’s wishes for funeral and burial arrangements.
5. Discuss your loved
one’s wishes regarding advanced medical intervention.
Make these wishes formal in a living will. Have your
loved one execute a durable power of attorney, so
that you may be sure his wishes will be respected
even if he is unable to communicate them.
A living will is a document
that specifies exactly what types of advanced medical
intervention a person with ALS does and doesn’t want,
should a medical emergency arise. These may involve
decisions about gastrostomy tubes and permanent respirator
dependence, for instance. Once a living will is signed,
it can always be changed. Having it in place often
eases the uncertainties of a person with ALS about
suffering unwanted medical intrusions.
A durable power of attorney
confers on someone, usually a spouse or other close
relative, the legal power to make medical decisions
in the event the person with ALS becomes unable to
communicate his wishes. Both these documents are available
at most hospitals. They are also available through
your attorney, and in the reference sections of many
public libraries.
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