Chapter 5 – The Unthinkable But Inevitable …
… Losing our Life Partner
With most couples it seems one partner is healthier than the other, suggesting they may be the eventual caregivers. Unless you die together in an accident, one of you is likely to experience declining health before the other. More often than not, the decline is gradual, perhaps even imperceptible initially - momentary dizziness or imbalance or fainting, an easy fall without injury, growing irritability (more than usual!), gradual loss of appetite and/or weight, decline in energy – no individual symptom worthy of concern, but over time a pattern emerges. Symptoms may be physical, mental or both; progress may be gradual, in spurts or abrupt. Doctor and hospital visits become more frequent. Even if denied by the declining partner, increasing impairment becomes obvious to the caregiver. Sometimes the symptoms produce a treatable outcome; more often the decline continues with increased infirmity and eventual incapacity.
The Dying Experience: The Last Three Months
Following are behavioral patterns characteristic of the last three months of a person’s life:
- 90 to 30 days prior to death:
Withdrawal: from news, TV, from the world
Withdrawal from people: friends then family
“Going Inside” the self
Increased sleep time
Decreased communication with others
Decreased interest in food, eating
- Few Weeks Prior:
Decreased wakefulness (increased sleeping)
Disorientation
Physical/physiologic changes:
decreased blood pressure
variable heart rate
variable body temperature
increased perspiration
skin color changes
respiration variable, less depth, coughing
- Few Days Prior:
Energy surge, talkative, eating, sociable
Earlier symptoms of deterioration increase
Restlessness, irregular respiration, congestion
Eyes don’t see
Discoloration of extremities
Unresponsiveness
End of Life Care: Stopping Nutrition and Hydration
“The great majority of patients in the terminal phase of an advanced illness experience reduced oral intake before death. The voluntary cessation of nutrition and hydration is a medically, ethically, and legally acceptable step that patients or their families may choose. The available evidence suggests that this approach is associated with a good quality of death.”
(Quoted from UpToDate, www.uptodate.com, End of life care: Stopping nutrition and hydration, by Marion Davis, MD, 2011.)
Consciousness:
The various medical conditions related to levels of consciousness include:
Locked-in Syndrome: inability to speak or move the arms & legs, but preservation of awareness and cognitive abilities.
Minimally conscious state (MCS): inconsistent but clearly discernable behavioral evidence of consciousness such as following simple commands, making gestures or simple yes/no responses (regardless of accuracy), intelligible verbalization, and/or purposeful behavior.
Persistent vegetative state (PVS):
Complete absence of behavioral evidence for an awareness of self or the environment. There is preserved capacity for spontaneous or stimulus-induced arousal, evidenced by sleep wake cycles. “Persistent” refers to being present for at least one month following the brain insult.
Coma:
Complete failure of the arousal system with no spontaneous eye opening or ability to be awakened by application of vigorous sensory stimulation.
The Active Phase of Dying
From “It’s OK To Die,” Monica Williams-Murphy MD, p. 115; further adapted from Hospice Patients Alliance: www.hospicepatients.org/hospic60.html.
- Patient may become less responsive and eventually enter a comatose state, from which they are unable to be awakened
- Behavior may change drastically and become uncharacteristic; may become agitated and confused
- Patterns of breathing become more irregular with progressively longer periods of no breathing (apnea)
- Sounds of fluid and congestion in the lungs become audible to those nearby
- Inability or refusal to eat, drink or even swallow
- Person may state they are going to die
- Bowel and urinary incontinence may occur
- Jaw will fall open with breathing through open mouth
- Person’s extremities will become cold to the touch and they may describe feeling of associated numbness
- Body may become rigid and held stiffly in position
- Blood pressure will drop dramatically
- Urine will turn dark, decrease in output and then stop completely
- Skin may turn pale, or blue or purple and a lacy mottled type of “rash” may occur
- Speaking may cease and the senses will turn off sequentially, but touch and hearing will be the last to go. Hence, it is important to speak to the dying and to touch them to the very last
If you live in a state that has yet to approve doctor-assisted suicide, you may want to see: “Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying” by Derek Humphry, 3rd Edition, 2002, or Bantam Dell’s updated edition 3.1, April 2010.
also: www.finalexitnetwork.org
Caring For Yourself as Caregiver
Over 40 million Americans today are caregivers – of spouse or elderly family member. For nearly ¾ of them it is their principal source of stress, requiring 20 or more hours per week, and on average lasts for nearly five years. Nearly a third report a moderate to high degree of financial hardship as result of their caregiving.
Conclusion: Caregiving is demanding & stressful. It is imperative that caregivers seek and find assistance and support in as many ways as possible, to ensure they also take good care of themselves.
cf: www.caregiving.com
www.caregiving.org
www.caregiver.org for the Family Caregiver Alliance
www.caregiveraction.org