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I work full time from home, and she has lived with me for over 4 years. She is in the end stage of Alzheimer's. She is 100% disabled and on hospice for a year and 2 months. I hold my breath every morning when I go to get her up. I want her to be comfortable and safe and of course I don't "want" her to die. But I am reaching extreme anxiety levels here, always ready for the hammer to fall. Do they just slip away one day from this disease? Or do they die due to an illness, infection, etc? Is that "going peacefully in their sleep" line just a lie? If it is, at least I can relax and not be expecting it all the time. She has no infections, skin breakdowns, breathing problems. Her actual health as far as all that is great. She takes in fluids and pureed foods with some minor swallowing issues, but her intake is still relatively good. Thank you. This is the first time I've ever asked a question.

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CarrieL,
Not everybody passes in the same manner. In fact, any of us could die in our sleep at anytime. I am explaining this because there are some factual clinical signs that a person in the dying process goes through. An R.N., hospice nurse can identify clinical symptoms (observable) signs a person in the active dying process has.
A lay person can learn to identify signs, such as a change in breathing: (Cheyne-Stokes respiration); mottling of the extremities; and other indications death is nearer to hours instead of weeks, months. Some family would not want to know this much, but if you want to know, ask the hospice nurse. Or go online. Or ask experts here.

Your emotions are on high alert, that is understandable. Some people have been comforted by changing perspectives. Instead of my mother is dying of Alzheimer's, they learn to accept: "My mother is living with Alzheimer's."
Saying it, understanding the tiny word difference may help a bit.

CWillie had a good insight.

Welcome to the AC forum!

And, in agreement with Countrymouse, a break from the caregiving and thinking about this 24/7 is required for your health and sanity. Even the hospice nurses burn out and are required to take breaks.
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NeedHelpWithMom Mar 19, 2019
SendHelp,

So how does a hospice nurse know what to say if a family member doesn’t want to know?

I go back and forth about how I feel. It’s hard. Can’t go by age. My mom always says to me that she can’t believe she is 93. My cousin is 97. My uncle lived to be 96. Geeeez, I don’t want to live that long.
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I'll tell you what I learned from watching the people pass away one by one in the nursing home - in the year and a half that my mother lived there one or two did die unexpectedly (presumably in their sleep) but with the vast majority it was obvious to the experienced eye that their time was approaching: often it was the rejection of food, one or twice a fall, sometimes a very brief illness that kept them confined to their rooms.
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CarrieL, when did you last have a complete break? By complete break, I mean off duty, not interrupted at night and with no demands on your time.
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Carrie,

Life isn’t fair. We all know that. Doesn’t make it any easier to accept though. I wish it was different for you. I wish you still had your son. I have two children and I can’t imagine them not being in this world anymore.

A therapist once explained grief to me as waves. It’s true and those big waves can really knock us down. I’m so sorry you are grieving at the same time as caregiving. That’s an awful lot to endure. I hope there is peace in your future. Don’t apologize to anyone for how you are feeling. You feel what you feel. I’m not going to say any dumb cliches to you. You don’t need to hear that at this time. Sometimes I feel like telling people to shut up and go write a Hallmark card! Haha. We can all get in moods or go through bitter times. Doesn’t mean you are a rotten person. Obviously, you aren’t. You are doing one of the most selfless jobs, sometimes thankless job, of caring for someone. It’s hard. It’s damn hard!
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NeedHelpWithMom Mar 19, 2019
JoAnnn,

You are caring to us on this forum even not being there physically for your mom. We all do what we can do. Not always possible for everyone to be there for a parent physically. Doesn’t necessarily mean they don’t care. Each case is individual. Same as 24/7 caregivers like me. Fine line because if we burn out, we won’t do our best.

I was complementing you on being caring on this forum most of all. We that are going through issues benefit from others who have reached the other side. It helps.
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My Mom had Dementia. ALZ is a little different in how it effects the brain. The last stage is they go into the fetal position, which is what happen with my gmother at the age of 86. Her son passed at 83 with pneumonia.

With my Mom it was anxiety so bad they had to medicate her. Then it was not wanting to get out of bed. Then closing her eyes and not opening them but she responded to touch and speech. Then not being able to swallow. Hospice was brought in at this point. Six days later she was gone. 20 minutes after my nephew and I visited. The nurse asked me if nephew was the last one that needed to see her. I said yes, because of his disabilities she worried about him. She says she has seen it many times. She has asked family if there is one person who hasn't said goodbye. If answer is yes, she tells them to get them on the phone, put it up to the persons ear and have the person tell them goodbye. Not long after the person passes.

Hold her hand and tell her its OK to go. That everyone will miss her but you all will be OK.
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NeedHelpWithMom Mar 19, 2019
It’s true. JoAnn. You are a lovely compassionate woman. Thanks for continuing to contribute on this site for those of us still caring for others.
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Thanks for your kindness about my mom. I know you love your mom, just like I do. It’s hard. The waiting part is the worst. You are in the worst stage. I am so sorry. I wish I could say something that could help.

My brother was at an end of life hospice facility. The waiting is so hard. Once, he even left but he had to go back. That time he eventually died. But it wasn’t a year like your mom.

I too relied on what nurses said. It’s really strange because some who are really sick hang on and others who look like they have a fighting chance die.

Almost like, a crap shoot. When your number comes up it is time to go. When it’s not your time. It’s not.

Even when it isn’t illness. I’ve had a gun pointed to my heart in a robbery and I panicked big time! Well, of course I pissed the burglar off and he started to panic because I was frozen. Hey, I was only 17, at my summer job. He finally spoke to me and said if I didn’t give him the money I would be dead. The word dead clicked with me enough to snap out of it. I gave him the money.

I basically went from being frozen to begging for my life. He made me lie face down on the floor and asked me to give him 15 minutes before calling the police, which I did. My boss had always told me not try and protect the money but to save my life if I was robbed. Anyway, wasn’t my time to die.
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CarrieL Mar 19, 2019
a year ago, my 15 year old son died. The dichotomy does not seem fair to me at all. This does not make sense. I can't see how any of this is a "plan". why would it be a child's time to die, but not a severely demented and completely disabled woman who has lived a long full life? I'll never understand until a) I die and go to what ever after life there is, or b) I die and cease to exist, in which case none of it matters anyway. Yeah... i'm a little bitter...
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yes, I definitely don't want her to die. But I am always at this high stress level expecting it to happen any day. The hospice nurse tells me she is on the program much longer than most of her patients. But she also tells me that she IS at the end stage. It's just taking longer. The stress level of always thinking she is going to die at any moment is becoming overwhelming to me. I have basically been thinking she is going to die for a straight year now. If anyone else has had this experience, and can tell me that most likely she will go soon. OR, if she can keep living like this for months? years? is that possible? Well, at least then I could relax and just focus on caring for her and not always being at this heightened state of anxiety all the time. thanks for replying. Yes, it helps just to have another person talk with me. hugs to you and your momma too
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Hi, I think I know the meaning behind your question. It is not wishing your parent to be dead. It is curiosity about the disease. Am I correct or off base? Because I have questioned Parkinson’s. That is what my mom has. She’s 93! Like your mom, she is hanging in there relatively well compared to others. That’s not just my observation but her primary care physician and neurologist says she is doing remarkably well for a Parkinson’s patient. Neurologist explained to me that people who get Parkinson’s later in life progress slowly and people who have Parkinson’s younger in life, like Michael J. Fox progress more quickly.

Others can help answer about ALZ and dimentia. My mom has not experienced that. How is that determined? I’m curious about that. I know that some Parkinson’s patients do get dimentia and hallucinations.

It’s difficult to say because disease or illness effects everyone differently.

I’ve had mom since 2005 living with me. I know what you’re saying in that regard too, it’s just plain exhausting and it does create anxiety as well.

I’m not sure if I offered any help or not but I hope my understanding of the situation is some comfort. It is a comfort to me to get feedback from the lovely people on this site. Hugs!
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