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Quite frankly, with dementia, they do not know they are at the end of life. Mentally they seem to regress to another time and stay there.
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Pamstegma, How will I know she is nearing the end?
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Indicators are weight loss, poor appetite and finally refusing food. As long as she wants liquids, good, but eventually she will refuse even that. My MIL had a history of stroke. She was still at the eating phase, although very small portions, when one more stroke hit her during her afternoon nap. She never woke up and passed that night.
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I hope you can discuss this question with a hospice or palliative care helper. They should have information you can read also. Dying is a process and it will be comforting for you to know what to see and look for. Even though you may want to give water, for example, it will interfere with the process towards the last days.
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I don't think there is a clear cut answer, everyone is different. My Mom suffered from dementia and was in assisted living until she kept suffering recurring UTIs and dehydration. She went into a nursing home (I was hoping the PT would make her stronger and enable her to return to assisted living) and passed away 6 months later. I spent time with her every day and watched as she slowly faded, both in spirit and in body. She got weaker, didn't care about anything, wasn't interested in doing anything. Started losing a lot of weight, developed trouble swallowing. Wanted to stay in bed all the time. She was dx with fluid in her lungs and developed pneumonia, and passed away 2 weeks later.
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The brain controls all bodily functions, and as the disease progresses, muscles start to contract, they become bedridden unable to eat and drink as those mechanisms cease to work. Death follows when the respiratory functions cease or heart failure occurs. It is such a horrible disease for loved ones to watch. My mother's anniversary is Jan. 30, 2002, and after 14 yrs. I can still see her lying in bed unable to move.
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Omg Cocobel that is exsclty what happ to my Mom. 2 wks ago to b exact. She had a staghorn stone which caused many utis/severe delirium until it was discovered. She was due fof surgery to remove it but did exaclty as you described. Didn't wanna move, stsyed in bed & slept all day & it was the pneumonia that got her. Still so mad @ that lady!!
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Sorry for typos!
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I think what amazes me so much is that there are dementia patients who are bedridden, unresponsive, unable to eat, very thin and yet they linger for months. I know a lady like that and I just don't understand how she is alive.

Then, I hear of healthy people who get dementia and they go straight downhill and are dead within a year. I guess it depends on the cause of the dementia as well as the overall health and any underlying medical conditions.
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Hello. My husband had Alzheimer, one of the most common forms of dementia. You never can foresee when the real end is coming. I visited my husband together with my daughter on wendayafternoon and on fri eve I went with my female colleague for a small snack to a restaurant in her town, about 15 km = approx 10 miles from the nursing home. They called me around 20.30 hrs telling me he was deteriorating rapidly. I was very surprised as on Wednesday, he ate a large piece of cheese cake and afterwards had a fresh beer, all without problems. I called back to the nursing home to tell that I would not be there in 10 mins, as I was not at home. There was a long silence. Then she said : do no hurry, he just passed away. For many months he was laying in bed, did not speak any longer, but could eat very well. For the rest, it was a living plant. It all depends what part of the brains are hit by the disease at a certain moment. If it are the lungs or the heart, then death can go as fast as within the hour, as was the case with my husband. You can not compare dementia with other diseases where you have a better insight when death can effectively be expected / foreseen. Anyway I wish you a lot of strength as heavy days / months are laying ahead of you. But although I was very sad about his death, I also was relieved because all the suffering was over and done with.
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My husband had a stroke 13 years ago. I spent the first 10 !! years checking on him hourly to see if he was still breathing. That level of vigilance really wore me down. My own doctor explained to me that one day I'll go in his room and he will have passed in his sleep. She said for most doctors (he was a doctor), that would be the preferred way to die. Her explanation helped me de-stress. Somehow I thought my checking and anxiety was keeping him alive. Now, 3 years later, he's sleeping about 22-23 hours a day. To me he doesn't seem nearer to dying than he did right after his stroke. I've been told this might go on and on, or the end might come suddenly. Hospice comes to our home 3 times a week to check his vital signs and clean him and his bed. Having their support has been a huge gift to me and my mental health.
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Interesting this topic just came up. I asked our Caregiver just this exact question this morning when she came in. Her response was exactly the same as these responses. Thank you. God reaffirmed the Caregiver.
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My mother, 91, has dementia and has started more frequently to get agitated, angry, and fearful even though the doctor has put her on medication. Some days it doesn't work. She is hitting us more and more. Not wanting to hurt her, I just sit there, praying, till she tires of hitting me. She packs almost every night wanting to go "home" to her childhood home(no longer there). During the day she may have a good day, but my husband and I are always watching for her leaving us mentally from a calm state to one where she is quite unmanageable. She still eats well, although it's small portions. From other's experience, are we to expect more of this or is there still more severe management concerns before her food intake changes and she no longer wants to eat? I work during the day, waking up at 5:30 in the morning to unpack, make her breakfast and start her meds. My poor husband takes over until I get home. Her funds were not managed well by another family member so now I have no other option for her care. I love her with all my heart and it pains me to see her this way.
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as usual , pam stegman dont waste words . muscle wasting is a great indicator of end of life .
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Stopping eating is the last thing from what I have researched and heard. Body filling with fluids is also the beginning of the end.
My Mom had 2 strokes 6 years ago, has dementia, doesnt walk, doesnt talk, has major swallowing problems, cannot see, and is incontinent. Shes been like this , absolutely no change in her. I continue to puree her foods, thicken her drinks and feed her teaspoon by teaspoon for 3 hours each morning and 2 hours each late afternoon. I lift her on the toilet holding her up as I bathe her and hoyer her to her recliners and bed. Yes what means the end and how long can I do this? I know I shouldnt get her up on her legs that dont work but she poops on the toilet 3 hours after miralax and it helps the mess. How do you change someone in bed with poop, my mom is like rolling a 5' bag of sand. I can roll part of her and her body isnt all over, I roll her all over and she comes right down over the pillows. End of life? Hummm I wonder, should I be doing this, will I ever have a life? God only knows I love her and she can still kiss me when I ask, loves music , and can laugh when I laugh. Today after a 3 month wait I got an answer she qualifies for medicaid. I am going to get the at-home plan and hope I get many good people to help me, but I wont believe it until I see it.
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Quite honestly, they will not know when their organs start shutting down. A blessing, really.
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a hospice nurse told me that as early as 2 weeks before end of life, the person may start pooping--a lot. I don't know why.
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