A Practical Guide to the Dying Process for End-Stage Alzheimer's Patients

An Annotated Bibliography on Dying for Caregivers of Alzheimer’s Patients

Evelyn E. Smith

M. S. in Library Science, University of North Texas (2012)

Addendum, January 28, 2016

First a Personal Note:  I originally thought about writing this post as I watched Mother die a few months ago, jotting down terms the hospice nurse used to describe the physical process of dying. Cindy Frasier of Providence Hospice, patiently answered all my questions, pointing out exactly what was happening and why.  This helped me more actively participate in Mother’s palliative care: On Mother’s last day, for example, I wiped secretions from the inside of her mouth when she started to emit a death rattle, duly noted the mottling in her feet and lower legs, traipsed down the hall to the nurse’s desk  at Wesley Woods Alzheimer's Center to ask for medications to relieve her pain, counted each second between breaths in what is known as Cheyne-Stokes Respiration, talked myself hoarse (Cindy reminded me that hearing is the last sense to go), sang most of the hymns in an old hymnal several times, read aloud all of Mother’s favorite Bible verses again and again, and urged Mother and myself to be brave while I prayed for strength for the both of us.  March 19, 2014, was the hardest day of my life, but I wouldn’t trade any minute of it.

Beginning with Elizabeth Kübler-Ross’ On Death and Dying (1969), social psychiatrists and physicians have broken down dying into a two or three-step physical process and an up to a five-stage emotional process, although critics quibble about the emotional acceptance of death in patients who are fully cognitive.  For the most part, however, Alzheimer’s patients don’t receive the attention that they should, although most authorities counsel that they too need to say goodbye.  Thus, during Mother’s last few days, some of Mother’s close friends dropped in, and fellow church members provided spiritual, emotional, and practical support; for instance, a friend brought me lunch, and the assistant pastor sat with Mother when I needed to go back home to let out the dog. 

This short bibliography also offers a warning:  Although hospice care of the dying is usually less traumatic than hospital care, if Mother’s dying process is any indication, a late-stage Alzheimer’s patient may experience pain that can be eased without losing consciousness.  Writing about a loved one's death also certainly provides some closure, so readers should feel free to post about how they coped with their loved one's passing.

End of Life.   (2014, April 16).  Alzheimer’s Society Canada.  Retrieved from http://www.alzheimer.ca/en/About-dementia/Alzheimer-s-disease/Stages-of-Alzheimer-s-disease/End-of-Life

In this most helpful Web page, the Alzheimer’s Society of Canada cautions that a caregiver should focus on the quality of the patient’s life rather than lengthening life span.  In most instances, this palliative care occurs in an institutional setting rather than at home (Alzheimer’s Society Canada, para. 1 & 2, 2014, April 16).  The Canadian Alzheimer’s Society then lists common symptoms as well as possible strategies to comfort the dying individual.  Thus, a loved one keeping vigil might massage the patient’s feet and hands if they are cool to touch, relieve skin pressure by strategically placing pillows, and moisten a patient’s lips when he or she no longer accepts food and drink.  The caregiver also needs to watch for signs of pain, so he or she can alert the hospice nurse (Alzheimer’s Society Canada, para. 3, 2014 April 16).

As the dying patient’s senses start to change as evidenced by sensitivity to noise and light, he or she will still respond to touch and sound.  That means speaking “soothingly” and “reassuringly”, and perhaps arranging a pastoral visit, thus, giving the patient “permission to go” (Alzheimer’s Society Canada, para. 3, 2014, April 16).  Finally, the Alzheimer’s Society urges the caregiver to take care of him or herself as  he or she “works through grief” (para. 4-7, 2014, April 16).

Hospice Patients Alliance. (n. d.).  Signs and symptoms of approaching death.  Retrieved from http://www.hospicepatients.org/hospic60.html

Hospice Patients Alliance breaks down the dying process into a “pre-active phase of dying” that may last up to two weeks as well as an active phase of dying that lasts approximately three days (n. d., para. 5). Most of the characteristics of the pre-active period can apply to end-stage dementia patient: Decreased intake of food and fluids, pauses in breathing or apnea, inability to heal, and increased swelling or edema (n. d., para. 6).   However, a late-stage Alzheimer’s patient usually is beyond the point of withdrawing from social activities, for since he or she can no longer speak, it's impossible to carry on a conversation with already departed relatives or announce that he or she is dying (Hospice Patients Alliance, n. d., para. 6).

Apart from making such pronouncements, “active dying” symptoms apply to all those facing death since the dying patient enters a semi-coma state while exhibiting cyclic changes in breathing as respiratory congestion increases. He or she now breaths through a wide open mouth and may not be able to speak even if awake.  In addition to these breathing difficulties, the patient isn’t able to swallow any fluids.  The end-stage hospice patient is now incontinent, although urinary output is greatly decreased and is now red or brown in color.  During this stage, blood pressure  drops drastically, systolic blood pressure dipping below 70, and diastolic blood pressure plummets to below 50, although if the patient is in hospice, the only way to find out these readings is to ask the hospice nurse.  At this point, the patent’s hands, arms, feet, and legs are cold to touch, so a purple or bluish mottling may appear in the lower legs, feet, and hands. Upon death, the jaw drops, and the body is rigid (Hospice Patients Alliance, n. d. para. 7). 

Even with all these signs of approaching death, no one can predict exactly when the individual will die until it happens (Hospice Patients Alliance, n. d., para. 9), but because hearing is the last sense to go, Hospice Patients Alliance encourages keeping up a one-sided conversation at the patient’s bedside (Hospice Patients Alliance, n. d., para. 10).

Late stage care. (2014). Alzheimer’s Association New York City.  Retrieved from http://www.alz.org/nyc/in_my_community_17737.asp

New York City’s Alzheimer’s Association provides a very long laundry list of characteristics of late stage dementia, offering tips for family members.  Even though most of these symptoms don’t necessarily apply to the actual dying process, some of them should sooth the dying Alzheimer’s patient.  For example, caregivers, focusing of what the patient might still enjoy rather than what he or she cannot do, can provide comfort through touch, smell, and hearing (Alzheimer’s Association New York, 2014, para. 33-39).  The Alzheimer’s Association additionally cautions that at this stage the patient needs only palliative care.  Thus, if he or she refuses to eat or drink, “it’s ethically permissible to withhold nutrition and hydration artificially administered by vein or gastric tube” (2014, para. 52).

The last stages of life. (2009). Kokua Mau. Retrieved from http://kokuamau.org/resources/laststages-life

Even though medical professionals speak of “dying trajectories”, each individual goes through the dying process at a different rate and exhibits variations in symptoms.  Even so, Kokua Mau, a Hawaiian hospice, notes some common physical traits that the dying pass through and offers suggestions for palliative care as the patient becomes less responsive to voice and touch.  Here, the caregiver is supporting the person, giving him or her permission “to let go” (Kokua Mau, 2009 para. 8).

As the patient loses interest in food and drink and is unable to swallow, forcing food may be harmful or painful, and urging him or her to drink may result in choking or force liquid into the lungs.  A caregiver, however, may wet the patient’s lips and apply lip balm (Kokua Mau, 2009, para. 12-15).

Constipation caused by lack of mobility and decreased fluid intake will accompany incontinence as the bowel and bladder muscles relax, so adult diapers are now necessary for every hospice patient.  Tea-colored urine at this point is highly concentrated (Kokua Mau, 2009, para. 16-19).

Reduced oxygen to the brain and dehydration may cause restlessness and agitation, so family members keeping vigil may need to alert hospice staff that the patient needs increased pain medications.  Meanwhile,  the caregiver should always identify him or herself when talking and speak in a gentle voice, giving lots of reassuring touches (Kokua Mau, 2009, para. 23).

Pooling secretion in the lungs and an inability to cough up this mucus the breath must pass through may cause a death rattle (Kokua Mau, 2009, para. 24).  The dying patient will most probably also have longer and longer periods of not breathing at all, followed by deeper and more frequent breaths, a condition known as Cheyne-Stokes respiration (Kokua Mau, 2009, para. 25).  Although using a syringe to suction the mucus rarely helps, a caregiver may gently wipe out the mouth with a clean cloth (Kokua Mau, 2009, para. 27).

As the blood moves from the legs and arms to protect the vital organs, a purplish mottling may appear when blood collects (Kokua Mau, 2009, para 28).  The caregiver may also cool fevered skin with a cool, damp washcloth and cover the patient with a blanket if he or she feels cold.   Since physical pain can be controlled, alert hospice nurses if the patient needs medication  Meanwhile a caregiver’s presence not only provides “loving kindness” but also “practical help” (Kokua Mau, 2009 para. 29-34).

Morrow, Angela. (2010, December 27).  The journey towards death: Recognizing the dying process.  Caregiver Revolution.  Retrieved from http://www.thecaregiverwebsite.com/2010/12/the-journey-towards-death-recognizing-the-dying-process-by-angela-morrow-rn-about-com-guide/

Morrow cautions that death is a personal journey, so each dying patient doesn’t always stop at every milestone.  Nevertheless, health professionals have documented three distinct phases that share common characteristics (2010, para. 1-4).

Between one to three months before death, the dying patient withdraws from his or her surroundings, even if the late-stage dementia patient will not be able to verbalize the “five tasks of dying”: asking for forgiveness, offering forgiveness, giving thanks, showing love, and saying goodbye, so the only outward signs that death is approaching may be that he or she is eating less and sleeping more (Morrow, 2010, para. 6).   Then between one to two weeks before death, the patient will start to show definite physical changes: A lowering of body temperature and blood pressure, an irregular pulse, increased perspiration, pale and bluish lips and nail beds, rapid and labored breathing, and a rattling breathing sound (Morrow, 2010, para. 9).  He or she may also show an increased state of agitation, possibly picking at sheets or clothing (Morrow, 2010, para. 9).

As the patient edges closer to death, breathing slows and becomes irregular, therefore entering a Cheyne-Stokes breathing cycle, while a blotchy and purplish mottling may work its way up the arms and legs, and the eyes, although open, may be unresponsive (Morrow, 2010, para. 12).  When breathing ceases, the heart stops (Morrow, 2010, para. 13). Because the dying can still hear, however, Morrow recommends that caregivers “sit and talk to the dying” (Morrow, 2010, para. 12).

Profeta, Louis, M. D. (2016, January 19). How we used to die, how we die now.  Exopermaculture. Retrieved from http://exopermaculture.com/2016/01/19/how-we-used-to-die-how-we-die-now/

Although  Dr. Profeta may be romanticizing dying within a home setting, he effectively argues for hospice care for the dying. 

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Terms Describing the Dying Process

Cheyne-Stokes Respiration: Also known as periodic respiration, Cheyne Storkes respiration alternates breaths of increasing depth and frequency with increasing periods of apnea, or not breathing.

Cheyne-Stokes and abnormal periods of respiration.  (n. d).  Patient.co.uk. Retrieved from http://www.patient.co.uk/doctor/Cheyne-Stokes-and-Abnormal-Patterns-of-Respiration.htm

Last days of life (PDQ): Supportive care—health professional information [NCI] care during final hours.  Cancer Health Center.  Web M. D. Retrieved from http://www.webmd.com/cancer/tc/ncicdr0000543592-care-during-the-final-hours

Death Rattle:  Also known as End-Stage Wet Respiration, Terminal Respiration Secretion, and Noisy Breathing, this ominous sound occurs when a dying patient cannot clear the throat through coughing or swallowing, so secretions of mucus build up, causing a rattling sound when air forces its way through the airway.  An Australia Palliative Care Consortium notes that the median survival rate for patients after the first death rattle occurs is less than 24 hours.

End of life care: Management of respiratory secretions. (2013, June). Eastern Metropolitan Region Palliative Care Consortium [Victoria, Australia].  Retrieved from http://centreforpallcare.org/assets/uploads/EMRPCC-%20EOLRS%202013.pdf

Morrow, Angela.  (2014, May 21).   The death rattle: Recognizing and treating end-stage wet respirations.  Dying, Funerals, & Grief.  About.com.  Retrieved from http://dying.about.com/od/symptommanagement/a/death_rattle.htm

Cynosis:  A bluish color to the skin caused by lack of oxygen.

Skin-discoloration—bluish.  (2013, April 21).  Medline Plus.  National Institutes of Health.  Retrieved from http://www.nlm.nih.gov/medlineplus/ency/article/003215.htm

Mottling: Reduced blood circulation in the legs results in a distinctive purple, reddish, or bluish blotches first seen in the soles of the feet and later seen in the legs and arms (Scott, p. 4).

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(http://www.proprofs.com/quiz-school/story.php?title=end-of-life-care_1)

Scott, Paula Spencer.  (2014). Swelling in feet, coolness in fingers and toes, and mottled veins before death.  Caring.com.  Retrieved from http://www.caring.com/articles/mottling-and-signs-of-death

Signs of dying. (n. d.).  Compassion and Support.org.  Retrieved from https://www.compassionandsupport.org/index.php/for_patients_families/death_dying/signs_of_dying

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Explaining Physical Symptoms 

Hagberg, Bob.  Hospice aide: Common signs of approaching death.  Retrieved from http://www.youtube.com/watch?v=5uRBPxNC1iA (23:12 minutes).

Jarkovich, Joan. (2012, January 14).  Death, dying, and hospice care.  The Joan Jarkovich Show.  Retrieved from http://www.youtube.com/watch?v=GkHQtJ_FRCo (57:50 minutes).

Signs and symptoms of dying—Cheyne-Stokes breathing.wmx. (2010 September 21). Midwife 2 the soul.  Retrieved from http://www.youtube.com/watch?v=bDebRCRVN08 (9:25 minutes).

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Just a reminder: 

 If you have been a caretaker of any extended period of time, make sure that you look after yourself. Case in point: When I went to the ophthalmologist the last week in December 2015, I got a scolding for not going to the eye doctor's for the last four years, although because I have had two detached retinas, in the past I scheduled an appointment twice a year. My doctor updated my prescription, and I see much more clearly and in greater detail.