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What Happens When Your LO is Dying and What Should You Do
Stephanie Z
Posted: Wednesday, January 21, 2015 7:40 PM
Joined: 12/15/2011
Posts: 4156


As a dementia care nurse for many years, I've been with a number of my residents when they were dying. What I can tell you about the death if a person in the last stage of dementia, is that  most simply slip quietly away.

      When a person reaches the terminal stage of Alzheimer's disease, they are no longer mobile and eating and drinking very little. This is the time for Hospice care if that is the wish of the family. They can help with many of the needs of the terminally ill, especially pain control and keeping the person as comfortable as possible.  This information is to help you understand what to expect.

      Eventually, in stage 7, the person with dementia  will stop taking anything by mouth at all. This happens when the body begins to shut down. At one time it was common for families to ask for feeding tubes when this happened,  fearing their LO would starve or dehydrate. But a lot of attention has been paid to the dying process in the last 20 years or so and we now know that feeding tubes and IVs will not really extend life and can cause discomfort and distress.
This is because the body is no longer able to absorb, metabolize or excrete fluids or nutrition. Forcing liquids or even using IV fluids puts an added strain on the heart, lungs and other organs, causing breathing difficulties, edema and other problems.

We also know that the dying do not experience thirst or hunger any more.

     A person who is in this stage is also at risk for infections, blood clots and pneumonia all of which may hasten the death but they are actually part of the dying process. If families choose to have the person treated for these problems, the person may linger a little longer, but death is still near.

      After refusing fluids and food, the person will begin sleeping longer and longer periods and eventually will be in a coma. Soon caregivers may notice that the hands and feet are cold and the skin has a mottled appearance. Actually, as the body shuts down, circulation is reduced in the limbs, preserving blood and oxygen for the body core and brain. In reality, if a person's temperature is taken at this point, we might find it is very high. For this reason, although care givers may try to put extra blankets on the person, if they are still able, they will throw them off. Better to  simply use a sheet.

      At this time, there may be some mottling of the skin, especially on the legs. This is normal and a sign that death is near. Breathing may sound moist as the swallowing mechanism is gone. Sometimes suction is used to decrease fluid accumulation in the throat, but this is rarely needed. This stage may last a few hours or even a day or two. Eventually the person will simply stop breathing and death will occur when the heart stops a few minutes later.

      What should family members say or do during this time? I firmly believe that dying dementia patients are aware that LO are there at the bedside. I always encouraged families to talk to the person, stroke their cheek, use lotion for hand or foot massages, and sing or read to them. On occasion (but not frequently). families will report that their LO had a moment of lucidity just before coma set in. At times they have been able to say I love you or goodbye. This is a special gift, but few of the dying are able to do this. None-the-less, there are indications that they are at least somewhat aware of their surroundings and we should do all we can to make them as comfortable as possible and assure them that they are not alone.

    The Canadian Alzheimer's Society has published a pamphlet, on line, with additional information I thought was helpful. Here is their website:  http://www.alzheimer.ca/~/media/Files/national/Progression-series/progression_endoflife_e.pdf

     Barbara Karnes, hospice nurse has a video/booklet on death from a hospice prospective: www.brainsupportnetwork.org/gone-from-my-sight-terrific-online-videobooklet/


Hope this helps,
Stephanie Z

Because she's my mom!
Posted: Wednesday, January 21, 2015 11:30 PM
Joined: 12/15/2011
Posts: 737



Thank you, Stephanie.

storycrafter`
Posted: Thursday, January 22, 2015 11:14 AM
Joined: 12/17/2014
Posts: 1066


Thank you, Stephanie. It is a very special time, and it's an honor, to be with someone in their final moments and/or to be support to those family members around the dying person.
jfkoc
Posted: Thursday, January 22, 2015 11:18 AM
Joined: 12/4/2011
Posts: 15794


thank you !!!!
scma_2007
Posted: Thursday, January 22, 2015 12:59 PM
Joined: 9/13/2013
Posts: 112



Thank You, Stephanie.

Many invaluable details that one can only get from your experience.


syrac818
Posted: Thursday, January 22, 2015 2:15 PM
Joined: 5/1/2013
Posts: 130


thank you Stephanie, this is very much appreciated information.
J's daughter
Posted: Friday, January 23, 2015 5:27 AM
Joined: 9/20/2012
Posts: 471


I consider it an honor to be at bedside while an individual ends their journey. I have been present for the death of two 30+ year old fathers dying from glioblastoma and many, many aged patients and LOs who have lived long and well.

A respectful and gentle passage is a wonderful gift to give to the patient and the family.

Having a strong faith in God and knowing that death is not final makes my personal perspective easier.

thanks for the post Stephanie. I sure wish I could share a cup of coffee and some time together with you, but I am very thankful for this Board.

karen


Beartracks
Posted: Friday, January 23, 2015 9:12 AM
Joined: 10/9/2014
Posts: 490


These are the types of posts that are the reason I come here. I come to read and learn and hear of others experiences and helpful suggestions. Thank You!

FarmerGal
Posted: Thursday, December 31, 2015 10:34 AM
Joined: 11/7/2015
Posts: 49


Thank you for this post!  This is what I remember when my grandmother died of ALZ.  It brings it back to mind, as I prepare for the inevitable passing of my mother, now at late stage 6.
His Daughter
Posted: Thursday, December 31, 2015 11:36 AM
Joined: 6/25/2014
Posts: 2243


Stephanie,

Just to let you know, I had printed this post and took it to my dad's house, when it was first posted.  All of my care team read it.  

  This is one of the things I have mentioned, is that there isn't enough out written about the final stage.  Often the caregiver feels very unprepared and lacking.  Thank you for thinking of this for those who were in the final stage.

His Daughter


Michael Ellenbogen
Posted: Thursday, December 31, 2015 12:06 PM
Joined: 11/30/2011
Posts: 2092


I agree so much more should be written on this topic and easily available. There is a need of even more information then what was written in the original thread.  I would be more than happy to speak with you Stephanie for a better updated version. I don’t know the medical terms like you would use.

 


Zolly
Posted: Thursday, December 31, 2015 12:28 PM
Joined: 12/15/2011
Posts: 2283


Stephanie Z wrote:
As a dementia care nurse for many years, I've been with a number of my residents when they were dying. What I can tell you is that it is rare that the death if a person with dementia is not peaceful. Most simply slip away.
When a person reaches the terminal stage of Alzheimer's disease, they are no longer mobile and eating and drinking very little. This is the time for Hospice care if that is the wish of the family. Stephanie

..........................................

Stephanie

Correct, very much so.

My first funeral for one of my wife's co-patients was a little woman who was born tiny, oxygen starvation. At death she was approx. 3 feet long (never stood), and communicated with a vocal honking noise. When I voluntarily  attended the funeral of this tiny person, there was only 4 persons attending, including me. With my thought about "Everyone has the right to be said goodbye to" I gained many points with Staff at the Care Facility.

Since then I have been part of those whom pass away and are buried locally. I keep a photo of "Lulu", who at just prior the end was a near lunatic, but being absent of NOK her friends of many years put on a full fledge "Salute and Goodbye" to "Lulu". This demonstrative episode reflects what Alzheimer can do to even the most respected and productive pre-Alzheimer patient. "Lulu" in real life had been an admired teacher, author, painter, wife, and a widow of some 30+ years. "Lulu's" history told me that no one is immune to the ravages that Alzheimer can do to even the most respected and productive persons.   

Z


Cynthia in Virginia
Posted: Thursday, December 31, 2015 12:30 PM
Joined: 11/7/2015
Posts: 91


Dear Stephanie, From one nurse to another, thank you for your beautifully written and sensitive account of the dying experiences you have witnessed.  I can validate what you have written based on my own experiences.  It is an honor to be a nurse, to comfort both the dying person and the survivors, and to be part of such important and personal times in peoples' lives.  I will always be grateful to the families who allowed me to participate in their care.  Cynthia
MissHer
Posted: Thursday, December 31, 2015 2:50 PM
Joined: 11/13/2014
Posts: 1973


Thank you Stephanie...It gives me peace of mind knowing that.
Nina1949
Posted: Tuesday, June 28, 2016 8:34 PM
Joined: 6/28/2016
Posts: 1


You are a special person that is evident from your post.  I admire and thank you and all the other caregivers whose hands and hearts are taking care of our LO's.  My father is 90 and in Alzheimer care facility since September 2015.   He has declined significantly in the last two months.  It started after he returned to the facility from skilled nursing post pneumonia and they were not able to make any progress getting him strong enough to walk again.   I see him at least every other day.  His doesn't carry on any recognizable sentences any more and the past week has been sleeping most of the day.  Every once in a while he will have a lucid moment but then it goes away.   It has been so difficult seeing him like this.  My daughter is especially having a hard time seeing her grandpa like this.  My three grandchildren as well.   They are so good about going to see him, even if they just sit with him for a short while and tell him about their day.  My mom has very mild cognitive impairment and still lives in their home by herself.  She doesn't feel the need to see him very often and my brother lives in another state so my daughter am the primary care givers.  He had neighbors and golfing buddies that first came to visit but it apparently made them too uncomfortable.   I am certain he is nearing his final days and I think he does as well.  I so hope this doesn't go on for months and months.  He would hate it knowing this is what the next of his life was like.  We pray for him constantly.   Again, I thank you for the insight, it helped tremendously.   Keep up the great work, you are an exception to the norm!
CLM Sisters
Posted: Wednesday, June 29, 2016 4:44 AM
Joined: 10/7/2012
Posts: 15


Thank you for reposting this - my Mom is days/maybe hours away from her death and it has been heartbreaking to watch. She is in a NH facility under hospice care and yesterday we changed her meds for comfort only - increased and scheduled morphine doses, atavan for agitation, tylenol for fever (just started yesterday), and lasix (I think) for mucus that gets stuck in their throat/lungs- not exactly sure on that one.

I was praying for the final call last night but it did not come. She does not look peaceful, always moving around, fidgeting like her body is restless, then looks like she is going to sleep but it only last for a minute or so - this goes on and on continuously. We are waiting for the "peaceful" part. Even a coma at this point would be relief.

We were not sure what to expect in the final hours/days and never could have prepared for it. I have been reading this site more for information and truly appreciate those who share their experiences.

Praying each day that today is the day for Mom's eternal rest.

Thank you again

The "L" in CLM Sisters


MyParent'sSunshine
Posted: Wednesday, June 29, 2016 5:23 AM
Joined: 5/21/2016
Posts: 1862


Hi, Stephanie, Thank you for your helpful, factual and reassuring post about end stages. Your experience is worth buckets!

Nadine


a_step@a_time
Posted: Wednesday, June 29, 2016 6:15 AM
Joined: 11/21/2015
Posts: 165


 Stephanie this is a very useful post and wish it had been here before my parent passed.  We realized at end that my parent was trying to open their eyes to look at us but the eyes were crusted shut.  If you know how to address this, please let us know.  I don't remember what we did at end to realize but by that time we couldn't communicate with our LO.  I felt/feel sad we (and our loved one) missed the opportunity to have the eye to eye contact.

Thank you for you post. 


MPSunshine
Posted: Monday, October 10, 2016 3:19 PM
Joined: 5/21/2016
Posts: 1862


Hi, Stephanie,  Now that I have been through this process with my dad, I have to note that while the stages listed in the brochures and information are to some degree helpful, they are different in the particulars from person to person.  For example, my dad "rebounded" many times.  He would have a downturn and then a resurgence and this happened over a period of one and a half years.  He even went into a "coma" and then came out of it.  My dad had a full meal complete with a satisfying burp about a day and a half before he died.

To a_step@_a_time, a warm moist washcloth swabbed gently over the face can sometimes prove calming and also remove crusty secretions from the eyes.


Shirley'sLeanne
Posted: Monday, October 10, 2016 8:40 PM
Joined: 6/10/2016
Posts: 62


Thank you. I am in that process now and I'm crying. Saying good bye is hard.

 


rvgirl72
Posted: Saturday, December 3, 2016 8:07 AM
Joined: 10/21/2016
Posts: 69


Thank you for this.  My dad is not to this stage yet, thankfully.  

However, three years ago when my mother's illness was terminal, I decided to let her die naturally.  I felt extreme guilt & like I had "let" her die by not keeping IV fluids & feeding in her.  You don't know the amount of comfort I feel in reading this.  Knowing she wasn't thirsty or hungry makes me feel better.  She did die very peacefully & no matter how sad it was, it was a beautiful thing to witness.  She finally looked so at peace and she was no longer sick and in pain.  Thank you again.  Your words have helped me so much.  God bless you!


RachelO
Posted: Monday, December 5, 2016 9:31 AM
Joined: 6/22/2015
Posts: 324


Thank you Stephanie we need these words to honor and respect this stage of life and help our loved ones, ourselves and all our family members to pass gently through this time.
bela
Posted: Friday, March 31, 2017 11:16 PM
Joined: 12/15/2011
Posts: 4090


My mother's death was not peaceful
Hawaiigirl21
Posted: Saturday, April 1, 2017 2:28 AM
Joined: 3/24/2017
Posts: 273


Wow, Stephanie. Thank you. My mom is not at death's door but in the middle stages. This gives me an idea of what to expect.
shirleywhirley
Posted: Sunday, April 2, 2017 7:58 AM
Joined: 10/29/2012
Posts: 105


Thank you Stephanie.  I just read your post on the stages of dying.  I understand the process better but always find it amazing.  I lost my mom in 2013 and was by her side when she passed.  I thought I would never be able to be with her when she passed, but I found the process amazing and felt peace for her and myself.

I told my mom that I loved her and explained that I was sorry I had to put her in assisted living the last year of her life but I just wasn't able to take care of her and wanted her safe.  As much as I loved my mom I was never able to tell her I loved her so I said:  "Mom you can go now.  I'll be okay.  You'll be with your brothers and sisters, your mom and dad and little Sammy our dog."  She turned her head to face me, didn't open her eyes, but a slight smile came to her lips and then she was gone.  She'd been lingering on for about 2 weeks in a coma, but I think she was waiting for me to say it was okay to go.  

The hospice people told me she was lifting her body up and reaching for the ceiling and asking for her mother to come get her.  I was astonished.  I found this fascinating because my mother was NOT a religious person.  They also said she was speaking Italian at times and reaching up towards the ceiling.  I hope my mom is having a wonderful reunion wherever she is.


ladyzetta
Posted: Sunday, May 28, 2017 5:46 PM
Joined: 2/16/2017
Posts: 470


Stephanie,

This was a very nice and thoughtful post. I have been with 3 of my family members when they passed and this brought back memories. When my Grandfather passed 20 years ago he was in the coma and just before he passed he reached up to heaven and told my Grandma he was coming to her. My sister passed 10 years ago but she waited till all the family members got to her and I sat next to her and told her I was there and it was OK to go to heaven and a few seconds later she was gone. I have another sister who past last year and she went through all the stages you said, and she went peacefully.

I am now dealing with my DH who in is MC and hopefully not close to the final stage, but I am saving your post just to remind me of these final stages. 

You are a very caring and thoughtful person. The people you took care of I am sure felt the love you had in your heart for them. Thank You, Zetta 


feudman
Posted: Monday, May 29, 2017 9:39 AM
Joined: 6/5/2014
Posts: 1179


MMany thanks to Stephanie for such an important post...I'm glad to see it come to the top periodically. We will all be here eventually, and it can happen rather suddenly, so it's always best to be prepared.

I wanted to relate a recent incident, in the event it may help some of you down the road. We have had Medicare home health care since my wife's last hospitalization for abruptly losing ambulation & becoming unresponsive. They declined rehab as she was not responding to PT. Within a week of returning home, she had begun gagging on food and liquids, and abruptly stopped eating & drinking. The health aides were frantically insisting I had to get her to the ER ASAP, because she was "severely dehydrated." I was hesitant, and called the social worker with my urgent concerns. She never called me back. (I had many other problems with this agency, and this was the last straw.) 

I called Hospice, and within hours, she was accepted, and it was with pleasure I fired the previous agency.    There are many advantages to bringing Hospice aboard...there have been previous threads detailing them. They include personal support & counseling for the caregiver. For me, it was important that they understood I didn't want the vicious cycle of having her back and forth to the hospital for IV hydration & God only knows what else.   

During the many hours I spent wondering if I was making the right decision, I searched the internet to learn more about dehydration. Several sources said you can only survive 2-3 days without liquids, but this has often been proven to be untrue, and Hospice confirmed that. You should not be made to feel it is wrong to not force liquids, or that they will suffer.

If you haven't already, please discuss end-of-life directives with your LO while there is still time.

 


BethanyG
Posted: Tuesday, June 6, 2017 1:43 AM
Joined: 3/16/2016
Posts: 81


This was very hard for me to read but I appreciate it so much. Thank you for sharing this information, it answered many of my questions I was afraid to ask.
mom1526
Posted: Tuesday, July 25, 2017 3:51 PM
Joined: 3/19/2017
Posts: 53


Thank you.  You explained the process very explicitly but with a voice of comfort.  As I have posted on a couple of other walls on this site, Mom passed peacefully last week at 96 after only an 8 month decline.  I cared for her at home until she was 95.  It was indeed a gift to see our mom pass so peacefully.  Being there with her was difficult, yet playing her favorite hymns and praying with her helped me greatly.  I'm sure it helped her too, since I truly believe she is in a better place reunited with my dad and my grandmother as well as other family members.  There is an emptiness that will never go away, but I am blessed with wonderful memories and so grateful for having her for 96 years.  Other than the dementia, she was in relatively good health right to the end.
bela
Posted: Wednesday, July 26, 2017 3:38 AM
Joined: 12/15/2011
Posts: 4090


My experience was very different.
mom1526
Posted: Wednesday, July 26, 2017 5:49 AM
Joined: 3/19/2017
Posts: 53


Stephanie Z., I wish I had found you on this board as I travelled this journey with my mom.  Your experience and insight is invaluable to those who are going through this.  I hope to post on this site to help others by sharing my experience.  That is what this forum is all about.  God Bless you.
kellly
Posted: Thursday, December 7, 2017 4:59 PM
Joined: 6/12/2015
Posts: 1133


Thank you so much, Stephanie, for telling exactly what happens and what to expect. When you know what is going on, it's not as scary and easier to deal with it as it comes. This post is extremely helpful for keeping loved ones from panicking when these things start happening. Death IS the natural course that life takes eventually.
bayareagal
Posted: Saturday, January 27, 2018 1:48 PM
Joined: 8/13/2016
Posts: 27


Stephanie Z,

Thank you.  This is very helpful.  I'm sure you are familiar with Barbara Karnes, hospice nurse.  She wrote the wonderful little booklet "Gone from my sight."  Several years ago, she recorded a talk with lots more details about what happens to the dying person and what the family can do.

See:

www.brainsupportnetwork.org/gone-from-my-sight-terrific-online-videobooklet/

Robin


Stephanie Z
Posted: Saturday, January 27, 2018 3:08 PM
Joined: 12/15/2011
Posts: 4156


Bayareagirl,

     Thank you for that reference. I read the transcript. I think that the difference between what I wrote and her video is that she is talking about someone without dementia and spends a lot of time discussing what she believes the person who is dying is thinking at the time. People with dementia have problems with cognition. They most likely don't understand what is happening.

     I have been at the bedside of many dying dementia patients, and have talked to many of the nursing staff who worked under me whenever there was a death. We tried to make sure that we did all we could to ease the death. You would be surprised at how often, in a facility, the family is not there, or the person simply did not have a close family member.

  I believe that keeping things simple, telling someone they are loved and we are there for them: physical touch (stroking a cheek, holding a hand), playing their favorite music, using a little of their favorite perfume on the pillow, reading the bible if this is what they used to do, these are the things that seem to help the most.

    I will use the article as a reference to this post, so thank you.

Stephanie Z


lilww
Posted: Tuesday, February 6, 2018 7:23 AM
Joined: 8/8/2016
Posts: 100


Thank you Stephanie. I think we are very near to this. I am confused about the role or necessity of Hospice in a nursing home setting.
 
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