Death and Dying
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".
Death and Dying
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
- Talking with Unseen
- Picking at Clothes
Decreased blood pressure
Pulse increase or decrease
Color changes; pale, bluish
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
- Fish out of water breathing
- Cannot be awakened
It is important that individuals be aware of their wishes and that the wishes be formally documented in a legal document that is known as an "Advance Directive". Each state has different instruments for these directives and the caregiver should contact the local medical facility to determine the appropriate document to be be used. The Advance Directive delineates one's wishes regarding medical treatment and appoints a surrogate decision-maker on a person's behalf. Of course, the important aspect of the Advance Directive is to discuss end-of-life care before one becomes diagnosed with dementia or has an another debilitating illness.
pp.309-311. Beckerman, Anita G. and Tappen, Ruth. M. 2000. It Takes More Than Love. Health Professions Press: Baltimore, MD.
- Review the video clip on death and dying narrated by Dixie Merrill.
Dixie Merrill is a caregiver who is also taking care of three sets of parents--in laws, step parents, as well as parents. Dixie has been part of a support group and has indicated how information learned in the group has helped her cope with the death and dying.
Note how she describes the process of death and dying as peaceful and calming. She indicates talking about death and dying has made it less fearful and she also emphasizes the importance of advance directives.
- Consider the following questions for reflection when watching the video:
- What strategies helped the Merrill family cope with their mother's death and dying process?
- How can "Advance Directives" help individuals cope with the dying process?
© 2001 Ellis Waller, Coastline Community College