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What Happens When Your LO is Dying and What Should You Do
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.
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
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/
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.
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.
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
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.
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
Hi, Stephanie, Thank you for your helpful, factual and reassuring post about end stages. Your experience is worth buckets!
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.
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.
Thank you. I am in that process now and I'm crying. Saying good bye is hard.
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!
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.
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
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.
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.
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.