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She has Achalasia and the doctor refused to do her last botox treatment because of her poor health. She now can't keep almost anything down. She has so much mucus and phlegm she chokes on it. Her intake pretty much just sits in her esophagus until she gets bad pain and only gets relief when she throws it up. Hospice put her on scopolamine (?) patch and it helps but she gets sore spots from it. Neither the drops or pills we tried help. She has pretty bad dementia. So now with very little food/water intake she's been mumbling, gesturing, not sleeping much. Hospice Nurse came out last night (not her usual one) and said she thinks it's progression of the dementia. Mom seems restless and I can't understand 90% of what she is saying. She seems to be talking to someone nonstop. This sounds really strange but I wish I could understand her side of the conversation. I'd like to join in and offer her whatever I can. I don't want to have nightmares after she passes about her trying to tell me something and I'm not able to understand her. I requested antibiotics in case it's a UTI (she's prone to them). Sorry for the ramble. I know nobody can say for sure but has anyone else's loved one experienced this?  Also, she doesn't seem particularly agitated in her "discussions", more animated (?). But if she wants or needs something I'd like to be able to get it for her, if she just wants conversation I'd like to be able to offer that. I tried reading to her, she used to love that, now I don't think she's even listening. She's making signs like she is eating something sometimes and I know she's hungry. Even when she does manage to eat she gets a bad stomachache. Needless to say I feel so bad for her. I keep her favorite music on. I talk to her anyway. I hold her hand - she sometimes jerks away, possibly involuntarily. She has hand tremors on her "good side" gor the past year. She has been awake since 6 a.m. like this. No signs of sleeping. She usually sleeps all the time. Any ideas?

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Sorry for the ramble.
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I'm sorry your hospice organization and nurse are not being helpful to you, from your description it truly sounds as though your poor mom is experiencing terminal agitation and the end of her life is imminent. Are you prepared for this? Would you be willing to ask for drugs to keep her more comfortable in her final days?
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Agree with CW. Why aren't they giving her Ativan for agiyation? Are you swabbing her mouth?

Giving her food at this point is probably counterproductive. I'm so Sorry she's so agitated, and that YOU are dealing with this alone.

Call the hospice nurse and take her advice about giving mom meds from the Comfort Pack you were given.
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That is what I was afraid of. Yes, keeping swabs close by. I will contact them about which med to give her. She had lorazepam once and it did nothing. I've been taking care of her here at her home for 10 years (work full time and have a caregiver come when I'm at work)...you'd think I would have better prepared myself. Unfortunately not only will I lose my beloved Mom but I will also have to move because her home will have to be sold to pay her debtors. So much stress. Thanks for your answers and advice, very much appreciated. Blessings to you.
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((((((Hugs)))))))

I can attest to the fact that you're never prepared for the end.  Try to stay in the moment and not to worry too much about the "next".
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I'll try. Thank you.
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Are they testing her for UTI? These ar similar symptoms to Moms when she gets one.
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My heart goes out to you. I can offer no advice, only prayers.
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Thank you all for responses and prayers.
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At the end of life, talking to people who aren't there is very common. My father did the same thing. I didn't understand the majority of what he was saying, but I think that was due to the fact that he wasn't forming complete words part of the time, and not getting any breadth behind the words, so I could barely hear them. With Dad, I had the impression he wasn't talking to me. I really wished I could be part of that conversation, especially if it was my Mom or my brother he spoke to; both long dead. Listening to one side of that conversation was as close to them as I'd been to them in so many years. When I think back on it, all I can do is be grateful that he seemed to be calm. The expression on his face was more alert and attentive than it had been in months. But he was not looking at me; not seeing me. So I guess those words weren't meant for me.

The only way to prepare for the loss of a loved one is in having knowledge that you've done all you can for them while they are still alive. And it sounds like you've done that. That will give you peace, while you grieve. The rest is a matter of work, (clearing the house etc) that, for me was a comfort too. It helps to have something to do, when there the bigger issue is out of your hands.
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Dees, if it's any consolation at all I think you're doing brilliantly and you're doing everything right.

It's only a lay, anecdotal opinion but I'm sure you're also right that the intense "conversation" your mother is having is related to the dementia. My mother kept up her side of this kind of chat for a good couple of hours one memorable night in the ER. As long as it doesn't seem to be distressing her try to take some reassurance from that; but I agree, the moment you think it *is* distressing for her is the time to speak up and ask for more help.
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A big hug to you.........
It happens...make sure Hospice is on the scene monitoring her so there's no pain.
Nothing can prepare you for the end.
You've been a good daughter and wonderful caregiver!
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Dees1963 - First, I am lifting you and your mom in prayer. This is a tough journey.

From my experience, professional and personal, I agree with others who suggest working with hospice to provide meds that will provide comfort for your mom (and you when you know she is more comfortable). Especially to decrease the mucus.

Second, it is very common for individuals to talk with "someone in the room". Often times, those who can verbalize will say they are talking to a loved one who has passed or to God or Jesus. Is your mom a spiritual person? Reading the bible and playing gospel music may be beneficial. If you sing, sing to her. (even if you don't think you sing well, it's you she hears). Have you asked a member of the clergy to visit her?

One last thought, no matter what, when we all come to the end of our lives here on earth, we all need to decide - Is this it? Nothing beyond? If you believe there is something, like God creating us, there is relief in knowing this walk on earth wasn't just that, a walk on earth. I have seen the struggle many individuals experience as they are nearing death. We are mind, body and soul. Unfortunately, our soul gets forgotten.....
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Dees, I am with you in spirit. I lost my mom last May and what you're experiencing brings it all back. It was difficult at the time to go through, but now I can look back with peace and comfort and know that I did everything I could for my mom. My mom would do some talking, but it wasn't anything I could follow. She was mostly semi-comatose. She would wake up sometimes and ask where she was. I would assure her she was home. I had Ativan and morphine for her from hospice and those kept her pretty calm. I tried to keep her lips moist. She had some ragged breathing that final day. But she went in her own bed with me there with her, loving her, as you've been doing with your mom. I think that's the most any of us can ask as we leave this earth - that we are loved and cared for. You are doing a great job. Your mom would be proud. I am sending you big {{{Hugs}}}
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My mom seemed to talk with people, too, when she was nearing her time to leave. I just figured it was her family in Heaven. She always seemed at peace it was beautiful to watch her. As for food when Hospice stepped in (it was a week or less)they said not to feed her as she could choke. Very hard to do but the thought of choking was worse. I remember the night before she died, I dipped a baby spoon in ice cream and just let her taste the spoon. She seemed to enjoy that last taste and I'm glad I gave her one last taste of something she really liked. My mom died at home and the greatest thing we all got to be with her and all the girls even slept in the bed with her. Even the grand/great grandchildren got in bed and sat with her they combed her hair, talked to her held her hand, sang their favorite songs to her. She always loved having people around and making them feel special and she certainly left with them all here doing what she did best for them.
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It is not uncommon for hospice patients to talk to dead relatives.

As for her pulling her hand away, it has nothing to do with you.

Likely she wants to gesture with her hand, or sometimes elderly people become pressure sensitive and even the lightest touch can cause discomfort.
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I was with my aunt when she was very ill at home. She was not a very religious person but she did believe in God. As it got close to the end, she also began to talk to people. She would ask me if I saw so and so sitting at the food of her bed, then she would talk about people walking in a parade with balloons and music. When I would say I don't see them she would say don't you see my grandfather, he is wearing his plaid shirt he always wore. Then she would tell him I can't see him and then say oh, ok. She would never say but I figured he told her it wasn't meant for me to see him. She was suffering a lot but the images seem to calm her. I often wonder if what she thought was a parade (we live in New Orleans) was really loved ones coming to great her to ease her to the other side. At least that is my hope and that one day there will be a parade of loved ones waiting for me. As hard as it may be...you might want to tell her it's ok to leave this earth and that you will be fine knowing she is at peace. Sounds as if she is suffering and I know you don't want that. Let her go be with her loved ones where she will be healthy and happy again. And feel no guilt...find comfort in the fact that you have done all you can. I don't think the mumbling is meant for us to understand. As for the arm movements like she is eating, maybe she is having dinner with someone special. Bless you for being such a wonderful daughter and trust me, your mom knows and appreciates you being there for her.
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Wife has FTD. Much in your question describes her. She has an 'alien arm' her brain believes is not hers. It twitches and she tries to remove it when agitated.
She was prone to UTIs. We stopped diapers. Use washable bed pads under cotton sheets for sitting and sleeping. She wears long, cotton only skirts or oversized nightshirts. She sleeps on cotton sheets with no clothes.
We don't just wipe after toilet. We spray wash her underside. We have used a Brondell bidet seat since 2011 that washes her and the toilet is beside a walk-in shower. We monitor her urine with 10 parameter Urinalysis Reagent Strips for hydration, glucose, UTI, and others body chemistry. That has been a life saver.
We encourage her to be on her feet as much as possible. Sitting restricts the orifices. No UTIs since 2014.

Hydrating is a challenge. She doesn't remember how to lift a glass, she chokes if we tip it for her and is often reluctant to draw on a straw.
We use a turkey baster when she is incapable. We do not squeeze the bulb. We let it gravity feed or she will draw on it when she wants. We only hydrate while she is sitting or standing.
Watermelon is the best hydration when in season.
We add water to all foods Oatmeal is 1-1/2 cups. We eat much soup with fresh absorbing vegetables and rice. 2 cups of water.
When we hear her sniffle we use a child bulb syringe. We cut the nozzle to a stub because she can be combative and we just draw from the outer edge of the nostrils.
We have learned how to best position to draw from deep in. She has stopped fighting and seems to appreciate the coming relief.
We follow with Zicam swabs. She has not had cold, flu or allergies in years.

We found the right edible cannabis combination and dose. FTD does not respond to pharma and it has adverse effects. The cannabis greatly increases her awareness and we laugh often.
She cannot communicate or perform any act without total assistance and has to be watched as she is ambulatory and active 24/7, but she is happy. We are happy.
The UTI prevention is extra work, but so worth it.
Bowel and bladder require a scheduled 2-hour toileting, because she has little cognition, but is devastated when she soils herself. She will hold bowel and bladder until she explodes if a toilet is not available.
We offer a diet that encourages good digestion. We reluctantly stopped dairy and bread.
The Bidet spray stimulates stubborn poop-at-the-door. It works for me, too.
When the mass is too large for comfortable discharge we administer a gentle enema just inside the door.
We can do this for a long time.
When it is time, we will know how to make her comfortable in that, also.
Of all this UTI prevention is the most important.
"Eye hath not seen, nor ear heard the things that God has prepared for those who love Him"
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One more thing, besides the posts that say you are doing wonderfully well. As my mother was very close to the end a doctor came, and spoke very loudly bending down right close to her ear. She did respond. The doctor said that hearing is about the last sense to stay working. I don’t know if he was correct, but it did seem so to me.
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Dees (((((((((((hugs)))))
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Although there isn't any scientific proof that hearing is the last sense to leave, it is important to continue to communicate with your loved one. If they can't hear you, no problem. However, if they can (and I believe people can) then a wonderful moment happened for you and your loved one.
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Thank you all so very much. I sincerely appreciate your responses and advice. Mom is sometimes more awake/responsive. Yesterday was a good day - she had lots of visitors and actually laughed and hasn't done that in a long time. I did capture a few pics, which I will treasure. Because of the nature and stage of Achalasia she is unable to keep most anything down. She has lost a lot of weight and is hungry all the time. The doctor said he won't do any more botox injections because of her decline in health and risks involved with twilight anesthesia and potential bleeding. I almost think the Achalasia is worse than the dementia. So my poor mom suffers in so many ways. I don't know how much time she has left, but I'm glad my siblings are finally coming around to visit her. She doesn't recognize anyone most of the time, but I know she feels the love. Such a roller coaster of emotions. Truly she has been such a wonderful mother and grandmother. She raised us 7 kids on her own, and helped with grandkids, too. She is my mother, my best friend, my hero, my inspiration, my rock. I love her more than words can express. I am so blessed to have her for my mom. Peace and blessings to you all and your loved ones.
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Momsablessing - that family image brought tears to my eyes. Dees, don't worry about who her conversation is for, just listen and imagine what she might be saying and relate that to a good time you had with her.
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Big Hugs to you. ((( ))). I wonder if you can get the swab that is a bit soaked with lemon? I once had that after being hospitalized.
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A little lemon sounds like a good idea. Thank you!
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Dees, I'm so sorry that this is such a tough time for you! My husband and I have seen all 4 of our parents through the dying process, with 2 of them on Hospice, and what Wonderful care and assistance they gave us.


Like your Mom, 2 of our parents went through the mumbling stage near end of life, certainly conversing with someone, others not in the room, and probably to those who had passed over, it was unsettling at times, but they never seemed to be in distress, just babbling away.


Unless She seems to be agitated or in distress, I wouldn't worry too much about it, for some reason, their brains are being hyperactive, as sadly, they too sense that their end is near and they just have a lot to talk about, and probably, their babbling brings them some comfort.


I remember my Mom jabbering away a lot, and when I asked her who she was chatting with, it was Always my Dad, who had passed only 14 months prior to her passing. Knowing that, it also gave me great pleasure, as she made it Quite clear that Dad was right there with her, waiting for her (but in no hurry), to accompany her to Heaven, or so she often told us.


My FIL (on Hospice in our home), was Always a mumbler, only way more so in the end of his life. There were Definitely times there in the end, where he was experiencing agitation (not necessarily associated with the mumbling), and our Hospice Nurse helped us to recognize exactly when it was important for us to medicate him, as he did seem to be frustrated and in distress at times. Thankfully the Ativan helped this very much.


It is a sad and difficult time, so be sure to utilize All of you Hospice team resources , as well as help from your friends and family, as you well know how difficult and wearing this phase of caregiving is on You!

Those moist mouth swabs definitely help to keep their mouths moist, and help to remove excess mucus build up, our Hospice provided those, they have lemon flavored ones, and we kept our in the fridge and cooled, which he seemed to enjoy!


Honoring your Mom by caring for her so lovingly as she nears the end of her life, while so challenging, is also so rewarding, and you are doing a Beautiful job. I pray her final days are joyous and peaceful for the both of you, take care. Stacey B
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Dees: Those lemon swabs were like gold to me when I needed them. You're welcome.
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My beloved Mom passed yesterday morning. She had a rough last few days and the last few hours were very difficult. I stepped outside with the caregiver to gather a bouquet of Mom's favorite lilacs for Mom and when I came back in a few minutes later she was gone. My niece, who is a nurse, came in just before us and found Mom gone. I wish I had been with her, holding her hand. After 10 years of caring for her, she went when I stepped away. She told me when she first came home after her stroke that she hoped I wasn't the one who found her because she felt it would be too hard on me. Always Mom. My heart is broken. Blessings to you all and your loved ones.
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Dees, sending much sympathy to you and your family. I’m sure Mom had a beautiful passing knowing she was loved so much.
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Dees, perhaps your mother fulfilled her wish to pass w/o you being there, and was concerned for the effect it would have on you. Perhaps she was able to "time" it just right.

I am sorry for your loss and hope you can remember your mother as she was before she was so ill. Perhaps lilacs can be a favorite flower for her, and the lovely fragrance can help you remember her in better times.
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