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My mom has declined rapidly. She is eating very little and while she has been drinking liquids, today she refused what I tried to give her. She may rebound, but my guess is she is failing. She does not seem to be aware that she may be dying. She laughs and talks about the ALF activities and getting back to the “ball” exercise. When I mentioned that she will not do well if she does not eat, she looks completely puzzled. She may not feel hunger at all.


Here is my question. Do you think dementia patients are intellectually aware when they are dying? Or does the body just slowly shut down? She seems so content and happy. Perhaps that is God’s blessing if that is the case.


Perhaps she will rally and wake up tomorrow hungry and thirsty. We will see. Anything can happen with this disease, I suppose.


Thank you, my friends.

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You're lucky that she seems content and happy. Who knows what tomorrow will bring?? If they are shutting down and nearing the end, I think the brain knows and knows it doesn't need food and water anymore. I'd just see how it goes and offer but if she doesn't want it, I wouldn't push it, assuming she's of an age where nearing the end of life is not an unusual state to be in.
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Msblcb Nov 2022
Thank you. 93 and has lived a wonderful fulfilled life. Thank you for the advice.
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May I ask if she is on hospice, or if you've considered that? They would be able to support and advise. Sending you hugs during this difficult time.
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Msblcb Nov 2022
She is. This decline happened so fast that I engaged them earlier this week. What a blessing. I learned that they could have been very helpful earlier in the disease process. I am still hopeful that she will get better but it is so good to have trained professionals walk with you through this difficult time,
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My LO has been nonverbal for about 8 months, is bed bound with several pressure sores, eats and drinks when offered food.

She’s been on hospice since May 2021. Every time we have a quarterly review we all wonder how she manages to stay with us. One of our hospice nurses has said she’s seen this before and that each case has its own differences and similarities.

Your mother sounds like a lovely person. You’re lucky to have each other. ❤️
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My husband who had vascular dementia, and was completely bedridden was under hospice care the last 22 months of his life. When his 6 week dying process started in early August 2020,(and I was told by hospice that he would be dead in 3 days)my husband had no clue that he was in fact dying. He stopped eating then and only drank little sips here and there.
As I'm sure hospice has explained to you by now that when the body starts the dying process, the digestive system is the first to shut down and forcing food or drink can be very painful for the one dying.
About 4 weeks into my husbands dying process, he woke up around 10:30 p.m. and called my name. It was at that time that he told me that he was dying, and it was shortly thereafter that he went unconscious, and remained that way until he died on Sept. 14th 2020, after not eating for 41 days and not drinking for over 25 days.
I hope and pray that if it your moms time to leave this world for the next, that it will be a much quicker process than my husband had, as that was quite horrific to witness.
And just make sure that you leave nothing left unsaid between you and your mom. God bless you.
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Msblcb Nov 2022
I am so sorry that you had to go through that pain. It is strange, but sitting at her bed, watching her, helping her when necessary and seeing her open her eyes and smile has been a time that I will cherish. It sounds like it would be stressful but it is peaceful. I have spent the last few days second guessing, wishing I had done this or that..etc. I am sure that second guessing will probably return but for now this time is very precious.
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I have a friend who is dying now at home with hospice who is NOT a dementia patient. She is completely competent. However, when the body is diminished and add on a few mild medications you see that people are kind of in and out of the awareness. We are all, to be frank, unlikely to be able to grasp the reality of "death" and its approach. You will often find the dying, both those with and without any mental impairment, talking about the fact that they understand they are dying one moment and making statements that indicate they believe they will be here years hence the next. And example from my friend: "I need to do my ballot this weekend and get it in because this is my last election and an important one". Minutes later talking about "Well if so and so wins then next election I am going to blah blah blah....." . So just saying, it is kind of dependent on the moment.
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Is there someone you can reach out to like a nurse at the ALF or Hospice? It might help you to understand your dear mum's situation. My father with severe dementia passed recently after a bad fall. I was very worried that the pain medications they were giving him were making him lose his appetite and thirst. However, even when I offered him water he didn't seem interested. After he passed, I contacted hospice and they called me back when they had time, since it wasn't urgent and let me share my concerns. We had a long talk and I am at peace with what occurred. You might reach out now or talk to a nurse or doctor to see if your mom might qualify for Hospice. It is covered by Medicare if they qualify and I wish I had reached out much earlier so they could have been coaching me through his passing. I cannot say how much comfort and peace they brought to me. There is also often a "Palliative Care" service available as well if she isn't that close to the end.
Peace and comfort to you.
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Msblcb Nov 2022
I did do that and you are absolutely right. I should have called much earlier. Despite it being only a couple of days, I am already feeling so much more at rest with this terrible situation. Thank you so much!
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Watching my dad around the clock during his last days I saw his awareness of dying come for sure. But as the time came closer he seemed to withdraw to himself more. I saw that he was very much on a solo journey, but one that was peaceful. I just held his hand. I wish you both peace in this, your mother is blessed to have you
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"Content and happy" sounds good to me, Does she need to be "aware that she is dying?" She is probably just taking things as they come and at the moment they come. I'd let her eat or not eat as she chooses. You cannot keep her alive any longer by forcing food.
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I can tell you that today my mom does not remember that her eldest son died in January. She is not clueless of her state though. I think there is a peace that can come over some ppl. Not everyone. My mom had told me to tell everyone in October, "You know, so that when I die it doesn't come as a SHOCK" she said, emphasis and double sort of half-sarcastic hand-waves added by her to emphasize the word "shock". We've had several talks about it already, early last month. I told her weeks ago that everything is prepared, and there is nothing more that's heavy or important that needs to be said. So since then, she just.. hasn't. I just keep reminding her that her son in TX will be here on the 17th. She is still eating though. There was a period in which she wanted no food etc but she started eating again a couple days ago.

I'd say don't stress? But.. yeah. :(
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I am not sure anyone could answer that question for you. Everyone deals with/perceives their own demise differently.
I was with my mom until the very end. She was told by the doctors with all 5 of her children present that there was nothing more the could do (her kidneys failed).
I think it’s important that your mom accepts her demise and that you do too. Let her go being happy, you are the one that will ache when she’s gone, prepare yourself and she will prepare herself. It’s going to be a lot harder on you than you think.
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Endure Nov 2022
Hello,
just wanted to say that was a beautiful response💕
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My mom reduced eating for about a year. She had moderate dementia. Towards the end, she asked me out of the blue "will I ever get better/" My answer was similar to you. Shortly afterwards she started falling due to weakness and about 2 weeks later she passed after going on hospice. So yes, I believe there is an awareness.
Now I have gone through hospice about 4 times with family. Each had an awareness that things were not improving. One was in denial with hope he would get better, but he also saw the downward slope. Even when each was near the end and mostly not responsive, we are told to keep talking because hearing is the last to go. They may be aware but too weak at the end to respond.
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Yes they know. But I think they come to peace with the inevitable. At least with my father he asked for his morpheme and simply went to sleep.
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My husband passed away in June, but his last 3 months was a roller coaster. One day, he was fully aware and told me he wasn’t afraid of dying because he knew he would be with Jesus. Then, he would be completely out of it and they kept trying to get me to sign a DNR, which I didn’t want to do. Then, a couple of days later, he would be perfectly fine! It’s so difficult to watch! It is a horrible disease, but just enjoy the good days. Our last 3 months were something that were precious to me that I can hold on to, even though there were hard days.
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ConnieCaretaker Nov 2022
My husband and I both wear DNR bracelets and have signed our directives........we don't want to put those decisions on anyone else.
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I do not think my Husband was aware of anything the last week he was alive.
I do not think during the years I cared for him he was aware he was dying. He was never one to talk about death anyway. Would get upset at me if I talked about what I would want him to do if I were to die. Just flat out refused to talk about it.
I think some people are aware and if there is a belief in an afterlife and it gives comfort, great. But if the thought of dying is upsetting and causing undue anxiety I think that would be the proper time for medications to calm your loved one.
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I feel / believe it is 'beyond' 'intellectually aware.' It it another area of the psyche or spiritual b-e-i-n-g that is aware. (I believe in psychics that talk to the dead as they say, 'its just another plane ... to give you an idea of my belief system).

Another way to consider this is - how energy / healing light is transmitted. It has little to nothing to do w intellect.

There are huge sensors / receptors ... in the other senses (hearing, touch, touch, etc.). Do not discount the importance of the 'whole' person, including these areas of human development.

Dementia inflicted have highly (or more developed) sense of touch and respond (much like a dog) to voice / tone / sounds. No slight to dogs or humans; this is a fact and I adore dogs.

So, I would say absolutely 100% - somewhere in there, we don't know where, a part of them senses / 'gets it' . I had a client in the process of dying, in a coma, and I was there, talking to her. She was like an angel on earth. I certainly knew (or believed) she got my messaging - somehow - somewhere.

What matters equally is what the person extending communication / care believes - as much as whether that person believes or not, I feel it is transmitted 'somehow' to the person in transition. This is my belief. It is energy / light / love.

Gena
Touch Matters (I created this handle 'touch matters' because it is incredible important when interacting with dementia inflicted. Some / most soak up the gentle touch, a few others do not like it. However, touch becomes HIGHLY SENSITIVE as a person loses their cognitive awareness.
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It’s probably different in every case. My dad, who had vascular dementia ate and drank up until he lost consciousness for the last few days. Same with my husband who had a brain tumor. He sort of tricked his hospice nurse and slipped away much sooner than predicted because of that. It can be a sign they are close, but until they become unconscious they can and do rally sometimes.
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I think of it as a rocket launch and that our souls are the spacecraft that separates from the launcher; then we are free to go and join those who meant so much to us through our current life cycle, including pets!

The rocket launch sets us free from pain and suffering and creates a portal for us to travel through that offers hope and happiness.
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I believe that humans are spiritual beings having a human experience.....not the other way around. That we always have one foot here and one foot "over there" as it is....but when death, or rebirth, is imminent, we have a stronger presence on The Other Side than we do here on earth. Ergo why your mom was so peaceful, calm and happy right before she departed this life for the next. She was preparing for her rebirth and eagerly awaiting her arrival in spirit form once she passed.

Others can scoff, that's fine, but I've read and seen too much to believe otherwise.

Your beloved mom was not scared transitioning, and is blessedly fine now with God and her family members who've already departed, on the Other Side, enjoying life with no pain, dementia or limitations of any kind.

"We are not human beings having a spiritual experience. We are spiritual beings having a human experience."
-Pierre Tielhard de Chardin
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KNance72 Nov 2022
Total agreement
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My mom really didn’t know and kept her sense of humor - my brother didn’t know either -
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In our case, hospice was an invaluable resource and presence. They had a booklet on the process of dying, and with each step we could follow the regression with Mom. In the end, her face was serene and she had no wrinkles on it. And my brother said that he saw a small smile too. It’s all a ‘guess’ as to whether they are aware of what is happening, but if you ask my family…
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Yes I do believe they are aware of they are in end stage of their life.
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My grandfather collapsed, my uncle held him in his arms, grandfather said "Don't you hear the death rattle"? And then he died.
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Msblcb: Although my mother did not suffer from dementia, she suffered a life ending ischemic stroke. Although she was unresponsive with her eyes closed, she did give me a silent goodbye when a solitary tear ran down her cheek.
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According to what my brother, who spent the night with our mom, told me back in 11/19/2014, my mother smiled at him when only hours away from her death at age 95! Her RIP and peace!
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The week before mother died, I made a quick visit. She was not 'herself' and struggled to find words and names.

She said she felt 'foggy' and asked me what was wrong with her.

I said "Mom, you're 92.You are winding down a long life and I am sorry you are actually feeling the decline. What's wrong with you is that you are dying. Are you OK with that? Because we kids are fine and we're going to be fine. Just let life happen and don't worry. And if Daddy comes to get you--GO with him."

Maybe I gave her the 'permission' to die. She did pass a few days after my last visit.

Believing, as I do, in a wonderful, pain free afterlife, I was not distraught over her death. I know where she is and I am fine with that. Still grieving, since this is only a few months ago--but happy she is done with this life, which, honestly? it's not so fun for someone old, sick and unable to make their bodies do what they want to do.
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Granny doesn't know, and it's really frustrating because she seems to not understand that some of the stuff we do is keeping her alive because she doesn't know that she's dying. One of her main problems is her anorexia, which she had way before the dementia, it's actually part of what is causing the dementia. But her body is now so malnourished despite a team of medical professionals, therapists, registered dietitians, etc that it's eating her organs. Her body has partially EATEN her heart, so her doctor put in a feeding tube. When we feed her, she complains about how bad she, "hates that thing,". It is literally the only thing keeping her alive. She is actively starving to death. She can't possibly understand that she's dying or she wouldn't act the way she acts. She understands that she's in pain, weak, and that her, "head is off," but she's had multiple people, medical professionals and family, tell her that she's dying and she doesn't seem to understand.
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" Gone From My Sight" may be ordered or most hospice groups have copies and, may gladly give you one, even if not on service.

This is a very good little book
( paperback more booklet) that clearly gives expected ( probably, likely) declines toward EOL, patient experience and what caregivers may expect to observe/ experience. It is broken down into 6 month, 3 months, weeks and days and hours experience. It also offers suggestions for the family/ others

This will answer best some or most of your questions and, may offer you opportunity for other questions.

Hospice groups will be glad to speak with you and, you may in fact find it helpful for patient and yourself to consider hospice services for your loved one. Call them yourself, don't wait to be " referred".....

Best regards
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