My Father is Receiving Dementia End of Life Care. How Long Will This Take?

As someone approaches the end of life with dementia, it's natural to wonder what to expect. This blog post explains the pre-active and active stages of dying with dementia, including common signs and symptoms to watch for.

My Father is Receiving Dementia End of Life Care. How Long Will This Take?

My father is receiving dementia end of life care.

I know everyone is different, but, this is for anyone that has experienced the end of dementia.

Dad has not been able to swallow anything since Saturday afternoon. He is agitated. How long does this last?

He is on Ativan and baclofen for agitation and hiccups. He receives them in suppository form, since he is no longer able to swallow. He is receiving  Morphine for pain and is rapid shallow  breathing. Hospice stopped has discontinued all of his other medications.

This is hard, but, this is unimaginable pain for my Mom. I am not sure how much more they can take. I’m here 24 hours a day. Please pray God, will open his prison door and set him free.

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With approaching death, it is not unusual for the family members wonder when exactly will death occur.

“How much time is left?” is a common question.  This is a difficult question to answer.  Doctors, nurses or others who tell family members or patients how much time they have left are just guessing.

I often, hear, how families tell how their sick family member lived well beyond the expectations and the predictions of physicians.

Studies and statistical averages are not able to tell how long a person has to live, they can serve as a point of reference

There are however,  specific signs that approaching death is nearer.  Each person is different. Not everyone will show all of the signs .  All of the signs of approaching death are  not always present, in every case.

There are many variables, such as type of terminal illness, the metabolic condition of the dying patient.  An experienced hospice nurse can often explain these signs and symptoms you are observing. If you have any questions about changes in your family members condition, do not hesitate to ask your hospice nurse for an explanation.

I response to your question, there are two phases which occur prior to the actual time of death.

There is  the “pre-active phase of dying,” and the “active phase of dying.”

Pre- active phase of dying

This phase may be as long as a few months to the average of 2 weeks. There are always those situations when someone will appear to be on their death bed, when in fact, they were experiencing very low blood pressure or slowed pattern of breathing (these are not indicators of impending death).

There may be signs of:

  • increased restlessness, exhibiting in having the  inability to remain content in one position, insisting on frequent position changes. This is so exhausting for the family and caregivers.
  • confusion, agitation
  • withdraws from participation in social activities
  • increasing periods of sleep
  • decreased intake of food and liquids
  • begins to show periods of pausing in breathing pattern (apnea) whether awake or asleep
  • family member may report seeing others who had already died
  • family member states that he or she is dying
  • family member requests to see others  to settle “unfinished business” or  tie up “loose ends”
  • becomes unable to heal or recover from wounds or infections
  • There is an increase in swelling (edema) of either the extremities or over the entire body

Active Stage of Dying

The active stage of dying usually lasts about 3 days.

A person is that is actively dying may have these signs:

  • inability to arouse patient at all (coma), or responds when stimulated, but quickly becomes difficult to arouse (semi coma)
  • severe agitation, experiencing hallucinations
  • increased periods of slowed or pauses in breathing (apnea)
  • periods of  very rapid shallow breathing or periods of rapid breathing followed by slow deep breaths or other very abnormal breathing patterns
  • dramatic increase in respiratory congestion or buildup of fluids in the lungs
  • becomes unable to swallow any fluids at all
  • breathes through wide open mouth continuously and loses the ability to speak, even if awake
  • urinary or bowel incontinence
  • marked decrease in urine output with darkening color of urine  (such as red or brown)
  • lowered blood pressure
  • extremities (such as hands, arms, feet and legs) feel cold to touch
  • bluish or purple coloring to the patients arms and legs, especially the feet and hands)
  • body is held in rigid position
  • develops jaw drop meaning the jaw  may drop to the side their head

Keeping a vigil at the bedside is part of the process for many families, as they want to be there when their family members dies.

I would like to remind you that your family member can hear you, even up till the very end.

Your loving and caring presence at the bedside is an expression of your love for your family member. It will help him to feel calmer and at peace at the time of death.