As caregivers, one either becomes a better person
through compassion, patience, and humor, or they become embittered and
angry. Wendy Lustbader is an author who has written a moving book entitled
" Counting on Kindness: The Dilemmas of Dependency."1991.
The Free Press, New York, New York.
In the book she
describes the importance of receiving gratitude when we help others; because
giving help without recognition can embitter us as individuals. We need to be
kind, in order to count on kindness as we age.
The person who has dementia cannot always provide gratitude for their
caregiver. Gratitude must be looked for in gentle ways and unassuming
ways. Perhaps it is a smile, or a gesture, or an expression of love such
as placing the head on the caregiver's shoulder. If gratitude is not felt
even on an occasional basis, it is difficult to cope with death and dying.
Death and dying as Dr. Kubler-Ross indicates, is the "final stage of growth".
During the final stages of dementia due to Alzheimer's disease, an
individual may lose his/her ability to ambulate, verbally communicate,
swallow, or may become totally incontinent and continue to lose weight despite
nutritional supplements. Usually people with Alzheimer's die of another
problem---perhaps a stroke, or pneumonia due to aspiration. At this point, the
caregiver must be aware that the only way a person can stay alive is by
inserting a stomach tube that provides artificial nutritional sustenance.
Caregivers may have different feelings about this intervention for religious or
personal reasons. At the end stage of Alzheimer's the use of invasive procedures
such as a stomach tube, can keep the persons alive from months to years. This important decision must be made by the family
member and can create an "ethical dilemma". Families, should
in no way feel pressured by a medical professional
to insert life sustaining interventions.
When family members are prepared with regard to the physical process of death
and dying they are more able to accept death as an inevitable and peaceful
process. The recent expansion of Hospice Services has done much to promote
discussions about death and acceptance of withholding end-of-life medical
interventions. Once a person is terminal, as determined by a physician who
understands the disease process, a caregiver may decide to engage Hospice
Services. The physician must be willing to certify that a person will die
within six months. If the person does not die within six months, they are not disqualified
from the program.
Hospice Services are usually provided by a local Home Health Agency. Hospice
services can be provided in the home, assisted living facility as well as a
skilled nursing facility. When a family signs up for
Hospice Benefits they agree to forgo extreme invasive procedures and agree to
support procedures that alleviate pain for the person with dementia. This is
known as "palliative care" or comfort measures. At the final stage of
death, water and food are withheld as the individual no longer desires this.
This is a part of the natural process of dying.
Families can anticipate
the final stages of death by the various physical stages a person may be going
through. Barbara Karne, a Hospice R.N. developed a very comprehensive booklet
entitled "Gone From My Sight: The Dying Experience" which delineates
the various physical stages of death and dying. To obtain a booklet, contact her
at the following address: Barbara Karnes, R.N., P.O. Box 335, Stillwell, Kansas,
60085, 1995.
In Karnes' booklet she describes what occurs ,
one-three months prior to death,
one to two weeks before death, days or hours before death, and then the final
minutes. This information has been extremely helpful to families and can be
summarized as follows:
One to three months prior to death
- Withdrawal from world and people
- Decreased food intake
- Increased sleep
- Going inside self
- Less Communication
One to Two Weeks Prior to Death
- Disorientation
- Agitation
- Talking with Unseen
- Confusion
- Picking at Clothes
-
Physical
Changes
-
Decreased
blood pressure
-
Pulse increase
or decrease
-
Color changes;
pale, bluish
-
Increased
perspiration
-
Respiration
irregularities
-
Congestion
-
Sleeping but
responding
-
Complaints of
body tired and heavy
-
Not eating,
taking little fluids
-
Body
temperature hot/cold
Days or Hours
- Intensification of 1-2 week signs
- Surge of energy
- Decrease in blood pressure
- Eyes glassy, tearing, half open
- Irregular breathing, stop/start
- Restlessness or no activity
- Purplish knees, feet, hands, blotchy
- Pulse weak and hard to fine
- Decreased urine output
- May wet or stool the bed
Minutes
- Fish out of water breathing
- Cannot be awakened
