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My mother has dementia. She has lost significant weight in the past two months. Partially due to the disease (and mouth pain), but also partially due the neglect (took care of that this past weekend) she was enduring. Up until about 2 months ago she could walk on her on her own (she still can but is very weak and wobbles). She could go to the bathroom. She really cannot communicate with them like you and I do. However, she does but they either ignore it or don't recognize what is happening. When I asked the Hospice nurse today about my mom indicating she is scared and dying. She said they say that a lot. I wondered if there was any significance to it. She said yes, but her vitals are really good. I'm confused. I know we know at times when we are at our demise. It is heart wrenching to watch her cry and frustrated. She is down to 86 lbs. She was 112 lbs. two months ago. Is this a normal process for them? We had to tell the nursing home to feed her more, wake her up or feed her when she wakes up and do not put her on Adavant for her "behavior problems". Those behavior problems are her trying to tell them she is in pain or that she needs to go to the bathroom. They told us that when she tries to get out of her new geriatric chair they give it to her.

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Ativan is not given for 'behavior' problems as much as to calm elders down when they're upset, as was the case for my mother who was dying with advanced dementia and under hospice care. I was asking hospice TO give her Ativan, in fact, b/c she was upset and Sundowning something fierce as she was approaching the end of her life. Hospice should be in charge of your mother's medication regimen now; is that not the case?

Weight loss is common during the end of life process, especially since you say your mother has mouth pain. During the end of life process, elders generally do not WANT to eat much food; asking the NH to wake your mother up to 'feed her' is generally going against the body's natural process of shutting down by refusing food.

You should have a chat with your mother's hospice team about what to expect during the end of life process. Her being 'scared' and upset is something that they should be able to address and yes, medication is generally helpful in such situations. You can sit with your mother, hold her hand, comfort her with words and gestures, but if she's past the point of understanding with her dementia, there is little you can say that will bring her comfort (most likely). If she is a woman of faith, now is a good time to ask hospice about bringing in the chaplain or a priest or other clergy person to sit with her and say prayers. I had hospice call the Catholic priest to come by to see my mom when she was declining in her Memory Care ALF with advanced dementia. Her vital signs were fine, too, right until her final declining hours before she passed. Same with my father; his vital signs were totally normal until literally HOURS before he took his final breath.

My mother was wheelchair bound for a few years while living in Memory Care. When hospice came on board a couple of months before she passed, she started leaning over to one side in her wheelchair, and became very weak and unable to get to and from the toilet herself. She decreased her food intake dramatically also; the end of life signs were apparent to all of us.

The idea now is to provide your mother with the most peace and comfort she can be given, with medications via hospice, so her end of life journey isn't fraught with fear, anxiety or worry of any kind. That's the best thing hospice does, in my opinion; they don't force food, water, or any other 'life extending' measures, but instead, insure the patient is kept comfortable so they can pass in peace and without pain or discomfort of any kind. Your goal is to NOT watch your mom cry and be frustrated, and that is where hospice needs to step in and fix the situation immediately!!! There is always 'significance' to any person expressing fear, sadness or distress of any kind, even a person with dementia who still has feelings. This is where hospice is supposed to step in and listen to the patient, hear what she is saying, and take the appropriate measures to remedy the situation.

Speak with your hospice nurse immediately about what's going on and make sure s/he understands your desire to see your mom feeling comfortable and OUT of her suffering entirely. If this team is unable or unwilling to accomplish that task for you, fire them and hire another hospice company who's goal it is to see that you and your mother are comfortable during this difficult end of life process.

I know how hard this whole process is; I just endured it with my mother this past February. My heart goes out to you. I pray that God helps you both through this with the least amount of suffering and pain possible. All the best.
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Ativan was a gift to my dad during his time on hospice. It wasn’t for behavior but to help him feel comfortable and calm during such a hard time. He lost the desire for food, reaching a point that feeding would be cruel. Often, vitals aren’t a reliable indicator of signs of end of life, my dad’s were quite stable. It was the other signs that told the story, he stopped communicating, loss the desire for food, and slept more deeply. Dying is mostly a solo journey and all our trying to make it better has little effect. Hold her hand and remind her of your love. I wish you both peace
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How old is your Mother?
Is your mother in care; it sounds as though she is? How long is she in care?
Does your Mother have underlying illness, or a simple aging process with failure to thrive?
Does your Mother have hospice?
Can you tell me why you would want to force mother to eat, hence prolonging what is clearly a torturous existance? I don't understand that.
I am sorry your Mother is going through this and hope you can fill us in on the above questions?
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Since you mention a hospice nurse, she must be on hospice. Indicating that they think it to be reasonable that her end could be coming relatively soon. As a person declines, it seems reasonable that they will lose the ability to do things and get weaker, etc.

I'm sorry to say that it might be time to come to terms with the fact that your mom is failing. No one lives forever. While it is sad and hard, it's somewhat inevitable.

If it were my mom (which in any period of time, it could be), I will want to let her go gracefully. Not fighting what is naturally happening. My goal for her would be for her to be safe and comfortable not to try to extend her life as long as possible. At some point, I would focus on quality vs quantity.

I would stop having them wake her up to eat. I'd let the poor woman sleep. She's tired. She's failing. Don't fight it so hard.

So sorry for your mom's condition.
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Sherri7352,
I'm so sorry you are going through this.Your'e Mother sounds so sweet~
When my Mother said that she was scared to die,I tried to assure her that an angel or a loved one would grasp her hand and lead her to Heaven and all her loved ones would greet her and that seemed to help Mom(I think anyway.)
I'm sure sees all you do and how much you love her.
Take extra good care~
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I think she is fearful because her health declined in the past few months.

Perhaps a chart showing her vitals or a weight gain so she can see evidence. She was probably traumatized so she is trying to brace for the worst.

Does she like music, maybe playing peaceful music and doing some deep breathing with her to show her what she can do when anxious thoughts come.

Hoping better caregivers can give her reassurance day by day.
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My LO was an active participant in the Roman Catholic Faith, and she wanted NO extraordinary measures to prolong her life.

It was VERY distressing to me to learn that end-of-life medications might be administered to her as a hospice patient, and I worried about it until I consulted a very compassionate priest who assured me that ethicists within the Church had actually RECOMMENDED the use of medications for the discomforts of patients near death.

If you believe that she is herself indicating that she’s in pain, then she deserves to receive appropriate pain relief. In her case, that may mean that Ativan is EXACTLY what should be given.

Dramatic weight loss can also result when life is ending, and my own mother totally and vigorously refused food a few weeks before her death. Attempting to feed her more and wake her up may make her less comfortable rather than more so.

You are suffering her loss, and it is very painful. Won’t you feel some better by allowing the people trained to care for the dying to do all they can to help her rest and release?

Deepest sympathy to you.
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Force-feeding her is barbaric. Nature is taking charge, the medications will help the fear, unless you want to have her feel every terrifying emotion of dying, too.

I think you need to educate yourself on the dying process, get your head screwed on that it's indeed happening, and be a comfort to her instead of trying to fix what can't be fixed.

I'm sorry for your impending loss, but I just hate to see you doing this to her and to yourself.
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What is causing her mouth pain? Is it an infection? She could be taken off hospice to treat it and reenrolled once the antibiotics are done?
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