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Although I'll be the first to admit I am clueless & flying by the seat of my pants here but I'd be surprised to be told she has reached end stage. The loss of appetite just started about two weeks ago. She had a short bout with fatigue last year at this time but it only lasted a day. Tuesday she ate a decent meal, went to bed & didn't wake up until Wed night at 9pm. Do I just let her sleep?

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Yes I alwYs wKe my Aunt everyday they need ....to eat and they need a schudule ! Also she must need to use bathroom I say always stimulate her Yes wake her up
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mommyskids Nov 18, 2018
my mom's doc told us not to wake her, just make sure she eats when she does get up
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Riverdale, I hear you. i have discussed numerous times with family; let me sleep-I don't want to be awake, don't make me eat or drink if I don't want to, if I get a UTI or pneumonia- don't treat it, I would rather be in Heaven. Don't let anyone scold you for giving me ice cream all of the time- if that is all I want. Most of all, do not move in with me or move me into your home. Do not give up your family or job for me. Put me in a facility and check on me sometimes. I have worked hard and so Have you. I hope I am able to leave you some assets, but if I last too long, they could be used up. I do not want quantity of years of a person who is no longer your mom as you remember her. Do not send me to the hospital. Get me on Hospice as soon as possible.
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My mother wasn't eating (age 92) at the beginning of the year & had constant diaherra. The Dr said if she continued like that she had about 3 months. They eliminated Zoloft & the diaherra stopped. Then they put her on Megace (to stimulate her appetite )three times a day & now she looks forward to meals and has gained weight.
I think it's hard to know what to do since not eating is also the body's way of dying, too.
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My husband is on Hospice; his information sheet says the following:
Signs & Symptoms approaching death:

The patient will have a greatly decreased need for food & drink. Offering small portions of easily swallowed food, ice chips, fluids through a straw, or small sips of water may be helpful.

The patient will gradually spend more & more time sleeping during the day and at times will be difficult to arouse.

This could be what is happening so just let your mother decide what her body needs or doesn't need at this point and just be there for her emotionally.
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My first thought when reading this is...did she not urinate from Tuesday until she woke up on Wednesday? I hope you are checking her every 2 hours or so. This is important for at least two reasons.
1) you do not want he lying in urine or fecal matter as that can cause a skin breakdown.
2) remaining in one position for a long time like that can start a pressure sore (aka bedsore)

I would wake my Husband and 99% of the time he would go back to sleep when we were done with whatever it was that I woke him for. Shower, meal, change of briefs. And I am sure there were plenty of times when I was asleep that he was awake. (I had his hospital bed in another room positioned so he could look out into the back yard)

Just curious..is your Mom on Hospice? If not you might want to call Hospice and have her evaluated she probably would qualify and then if she does this again you can contact them and they will check right away for UTI or underlying causes right at home so you don't have to take her to the ER or Dr office for tests.
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Sorry ahead if my comments seem cruel to anyone but what qualities of life do you imagine trying hard to keep one alive if they are at this stage? I just had a conversation with my mother's doctor regarding her state of being leading to Alzheimer's. It may be better for some than others but total incontinence, loss of ability to remember how to chew or swallow to mention a few symptoms doesn't make me feel as though anyone involved would feel there is a point to continuing a life just for the sake of not wanting a loved one to die. I certainly would not want my life to continue if I reached this stage.
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Maryk, I'd ask her doctor to come and have a look at her. Is that possible? Can you beg or bribe a house call out of her doctor's office?

I agree with Cetude that you don't want to delay getting qualified medical advice, but if it were my mother I personally wouldn't want to subject her to an ER rollercoaster unless instructed otherwise.
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Judysai422 Nov 11, 2018
Good luck with doctor house call, BUT I would ask doc to put an order in for a medicare nurse to come. They are god sends. Hospice eval/services also sound like a good plan.
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No, unless you want her to die. IF this is a new behavior CALL 911 and get her to the Emergency Room as there might be an underlying cause like urinary tract infection, pneumonia or stroke so see her doctor. YOU MUST Stick with a routine, and you HAVE to make certain she sticks with it--every single day, seven days a week. When to get up, when to eat, and when to exercise, and even put her on the toilet on schedule. . MAKE CERTAIN THEY DRINK FLUIDS because they can also get kidney damage dehydration. Their sense of thirst is impaired so they don't even know if they are thirsty.  EVERYTHING has a schedule. She is no longer able to choose for herself so you have to do it for her. If you are ready to let her die, then get a hospice order and they will keep her drugged up, all nice and comfy in bed..then she will die from the inactivity. Sounds brutal but it's the truth. but you have to keep an eating schedule. KEEP AS BOWEL DIARY. Record each and every bowel movement. They can get impacted as little as 2 days. If she is still able to flush the toilet go on Amazon and put a toilet lock on (it's designed to prevent children from flushing).

 My mom's Alzheimer's is so severe I have to make sure my mom does everything on schedule and followed very strictly. When to get up, when to eat, exercise, toilet schedule, ensuring fluids are given using THICK IT..and meal time is no picnic for me.  It takes about 1-1/2 hours for her to eat and drink and I do this seven days a week AND my mom is an insulin-dependent diabetic for 20 years.  When my brother visited and he was retired from the military after 20 years, he was absolutely shocked just how regimented my life is because it is 100% centered around caring for my mom because her care is THAT SEVERE. I HAVE TO DO EVERYTHING FOR HER. If I don't she will die. I have been doing this strict regimen for the last five years it has warped my own sense and I've become emotionally dependent on my mom so if she dies it will be like I will die. I mean her care is around the clock and requires 24 hour supervision.
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Roxie0916 Nov 11, 2018
Wow! You need help.
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Hm, I'd be wondering if something else is going on to cause such a dramatic change in her routines, a UTI or some other infection or even a slight stroke? At this point in her life she needs to eat, drink and move in order to keep her body strong, frailty doubles the burden of the caregiver. I think I would be encouraging her to try to get up briefly to eat, change, go to the bathroom etc but don't push if she resists. Have you considered asking her doctor or taking her to urgent care?
I hope she recovers soon.
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cetude Nov 11, 2018
I agree with this. I think she should call 911 and get her in the Emergency Room, because if they don't eat or drink they will go down fast.
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It really depends on how advanced her dementia is and what you mean by waking her to eat. I tried to keep my mother on a somewhat normal schedule because it made life easier- in the morning she needed her medications and to be changed and toileted so it was logical to have something to eat then, but she went back to bed until noon. We did lunch in late afternoon and had supper about an hour before her 8:00 bed time (and meds). However - if your mother has reach end stage and is refusing food that would be a different answer.
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MarykAxe Nov 8, 2018
Although I'll be the first to admit I am clueless & flying by the seat of my pants here but I'd be surprised to be told she has reached end stage. She can still care for her self independently in some ways. She makes her own bed time, wake time, dresses herself, uses the bathroom, makes her bed....She even still has hours of clarity (daylight of course) everyday, with a little confusion thrown in but for the most part she s aware & if you didn't know her, you wouldn't know anything was wrong. The loss of appetite just started about two weeks ago. She had a short bout with fatigue last year at this time but it only lasted a day. Tues, she ate a decent meal, went to bed & didn't wake up until Wed night at 9pm (instantly she feel asleep on the sofa). Of course she refused to eat. Today is Thursday (10pm) she hasn't been up yet (I've been checking to be sure she s breathing of course). I wont wake her tonight, its too late but I'm wondering if she doesn't wake herself tomorrow, should I wake her to try to get her to eat or just let her sleep?
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If you are with her all day, keep something in the refrigerator that you can pop in the microwave for her. People with dementia are seldom “schedule-able”. And, it sounds like she’s Sundowning as well. Make sure you check with her doctor and fill them in on the situation.
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