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My 90 y/o mom is in the end stage of Alzheimer's, having been diagnosed 12 years ago. 14 months ago, my husband and I brought her to our house to live. Prior to that she lived happily with my sister for several years. As her disease worsened, my sister wasn't able to care for her in her home as well as work full time. We decided to place mom in an AL facility close to my husband and I, so that we could be nearby and visit every day. After a month in the AL and visiting every day, it became clear to us that we'd chosen the wrong place for mom. She had become combative, paranoid, and anxious, and begged us to take her out of there. So, we moved her in with us.


Our commitment was and is, to give her the best life we possibly can, for whatever time she has left on this earth. Shortly after bringing her home, she returned to being the sweet, semi-anxious mom that we all knew her to be. She's mostly compliant, and for that I'm grateful every day. She is in fairly good physical health, has a pacemaker, but no other real issues except the Alzheimer's. Hospice came on board about 4 months ago and visits once a week. They have assured me that we can increase the visits any time. She is still continent almost all the time. With assistance, she can still walk to the bathroom. She had a mild UTI which we treated with a course of antibiotics, last month. She's sleeping 16-18 hours a day now. This past week or so, she has all but stopped eating. I've been pureeing her foods and spoon feeding her for about 2 months, when she began showing signs of not swallowing even the soft foods. She'll drink a few sips of thickened liquids, eat a few spoonfuls of thin oatmeal, thickened protein drinks, pureed fruits. After a few bites she sounds winded, and says, "No More". I encourage her a little more but she gets agitated and says, "No." I guess I shouldn't push it, but I think this might be the beginning of the end. She's hallucinating, I think. She's been talking to people in her sleep for months. During the day, 75% or more of what she says is gibberish, but she seems to be talking to someone that I can't see. She'll have a moment or two of clarity where we can connect on some level. She's down to 90 pounds from a whopping 107 a year ago. I'm trying to keep her mobile by walking her around the house a little and short walks outside. Summer in Florida though, too hot during her waking hours. We get out a little, mostly to push her around the block in her chair after she walks a few feet. She doesn't really enjoy it anymore, but wants to get back home. I'm not sure what my question is. I feel like we've turned a corner with her not wanting to eat. Is this a signal that she's preparing to go? Is she really capable of deciding that, when her poor brain won't let her have a complete thought or sentence anymore?


Thank you in advance for reading, and your thoughts are appreciated.

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I don't think it is a decision, more a natural occurrence that takes place within a dying body.

Things shut down and the body rejects things, like food, because it doesn't need it any longer.

I would get hospice in more frequently and prepare myself for the end. Visitations from the other side are common when we are transitioning from this world.

You have been an amazing daughter and she was very blessed to have you and your husband, as well as your sister. God bless you all and may she pass peacefully, may you all be granted grieving mercies and strength during this time.
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TeamNancy Jun 20, 2019
Thank you so much, Isthisrealyreal. Hospice comes tomorrow for their weekly visit and I think we'll be discussing more frequent visits. I'm glad I can follow my mother's wishes without worry that I should be doing something different. I went through my grandmother's death at a SNF with my mother years ago and it has been like a guiding light in a way. My mom also has her written expressions which has lifted some of this burden.
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From my admittedly limited experience the rejection of food is almost always a sign that they've reached their final months, we can try to boost calories with supplements - some people even resort to feeding tubes - but the benefits are limited and in the end don't seem to add more than a token amount of time. As she gets weaker your caregiving will become exponentially harder so be sure to look after yourself, remember that putting on your own oxygen mask first allows you to help her.
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I cared for my MIL who died of cancer. I did a lot reading on what to expect. Lots of sleeping...reduced to no appetite...withdrawing into herself...seeing folks in dreams or awake....all are possible signs.

The worst thing you can do is force her to do anything. Her body no longer needs the nourishment and my notes said it can actually cause discomfort. Maker her comfortable and respond to get needs as she expresses them. Offer food and exercise but respect get wishes. And lover her just a much as possible.

I bought a baby monitor so I could hear if she needed anything. It want looking before I realized when she asking for help or just vocalizing.

In the end, we all take that journey without our living loved ones...but there are other loved ones waiting to help with the transition. It's not dying...it's just a handoff to others.

God bless you and your mother.
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TeamNancy Jun 23, 2019
Thanks, Tmaggie84. I'm very sorry for your loss.

I agree with you completely. It's hard to accept her not wanting to eat but once I'm satisfied that she knows she's turning it down, I accept her wishes. I make all her favorite things; pureed soups, fruits, and milkshakes but nothing seems to appeal to her after a couple of bites. More than a few bites does seem to cause discomfort, as you suggest.

She is loved tremendously, and I take comfort knowing that she is aware of all the love.

We have a baby monitor too, so that when she's in bed earlier than I, we hear her if she needs anything. I also have a motion light that kicks on if she sits up in bed. My bed is right next to hers, so I'm there if she has needs during the night.

Thanks for your response and for sharing your experience. It helps.
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When they're speaking with loved ones who've already passed over, that's a sure sign they're getting ready to pass themselves. Here is a link to read to see what the signs are:

https://www.medicalnewstoday.com/articles/320794.php

My uncle John was comatose for over a week when one day, he sat bolt upright in bed, a wide smile on his face, and said aloud "MOM"!! He passed over shortly thereafter, after a beautiful visit with his departed mother. As difficult a time as I know this to be, have faith that your beloved mom is preparing to depart this world for the next phase of her eternal life. You are doing, and have done, an incredible job of caring for her and that is a beautiful gift you've given her.
All the best as you navigate this emotional time of life, my friend.
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Becky62 Jun 20, 2019
Beautiful reply and personal story.I am a retired nurse with aging parents.I too have witnessed this greeting of loved ones who have passed, and definitely seems to preempt their own passing So beautiful to see.Love hearing these personal experiences and brings peace too most families during a difficult time. Kudos to you!
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I have no real advice on this, but want to thank you and everyone for posts that give me possible pictures of the future for my mom. I guess we can't ever be really prepared, but I think all the information helps me know what to expect somewhere down the road. Perhaps your mom will rally, but it seems that she is ready to go. I think exactly what you are doing is right, to continue offering her food and not to forcing it upon her. I love that you were able to bring her home for her last days. I hope I can do that if it seems right. Peace to you.
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TeamNancy Jun 20, 2019
Thank you for your kind words, ArtistDaughter. I don't know what's ahead exactly, but we'll just continue to do the best we can.
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Hospice should be able to tell u if this is the beginning of the end. Really, after 12 years I am surprised she is doing as well as she is. Must be the good care.😊

What u describe does sound like a decline and I wouldn't push her. Home can mean a childhood home. I don't recommend a feeding tube. If her body is shutting down a tube will not help. She is 90. Thats a good age.
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Reply to JoAnn29
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TeamNancy Jun 20, 2019
Thanks for responding, JoAnn. We've worked hard to ease her mind and make her feel the love, even though most of the time she doesn't remember the familial connection. Totally agree on the feeding tubes. She made it clear early on that we were not to do that, so we honor her wishes. Thanks for your kind words.
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My mother was on hospice 7 wks before she passed away at the end of May. She talked a lot to her imaginary friends/ relative's. Moaned a lot in her sleep and had hallucinations. Two days before she died she had intense hallucinations lasting all day and night.

Its only natural to make our loved ones comfortable and we'll cared for. My mom lived with us over a decade. There were many health challenges caring for her. You take a day at a time because every day it's something different.

I have learned not to push food on her. Hospice told me to offer it. It's ok if mom refuses. The body is slowly shutting down. Food will only prolong the dying process. Let mom sleep as long as she pleases. It's not unusual if she sleeps 16 to 18 hrs. My mom lost interest in many things she once enjoyed. Yes, it's hard watching the decline. This is all part of the dying process. Utilize hospice whenever you need to. Call them if you have any questions or you see or sense something out of the ordinary. Ask them to come assess your mom if needed.

Its not an easy job being a caregiver. Your very noble for taking on this huge responsibility. In the end you will have piece of mind knowing you did your best in caring for your beloved mom.
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Reply to Love2Garden
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I have no advice except hospice may have answers for you.
What I really wanted to say is:
I really admire you. Your family must truly love one another. I am helping care for my mil and have grown so angry and bitter. Your story touched me. Thank you!
May God bless you and your mother.
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Reply to caringdil
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I don’t think she is “deciding” anything. She is just doing what her body is telling her to do. Our bodies tell us when we need to sleep and when we need to eat. It is so difficult to watch the process, but it is completely normal. Don’t force anything. It is in our nature to feed and to nourish others, but how would you feel if someone kept trying to get you to eat while your body was telling you “no food”? Play her favorite music. Keep her surroundings calm. Sit with her. Talk to her. You have taken very good care of her (although at times, you may second guess yourself). I was in your shoes a couple of years ago. Caregiving is not for wimps. Not everyone can handle it. Bless you.
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Reply to Dandelion
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I cared for my MIL who died of cancer. I did a lot reading on what to expect. Lots of sleeping...reduced to no appetite...withdrawing into herself...seeing folks in dreams or awake....all are possible signs.

The worst thing you can do is force her to do anything. Her body no longer needs the nourishment and my notes said it can actually cause discomfort. Maker her comfortable and respond to get needs as she expresses them. Offer food and exercise but respect get wishes. And lover her just a much as possible.

I bought a baby monitor so I could hear if she needed anything. It want looking before I realized when she asking for help or just vocalizing.

In the end, we all take that journey without our living loved ones...but there are other loved ones waiting to help with the transition. It's not dying...it's just a handoff to others.

God bless you and your mother.
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Reply to Tmaggie84
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