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My mom has end stage parkinson and sleep all day and all night and has no appetite. about a month ago I asked her if she would ever want a feeding tube and she said no. my dad pass away 2 months ago and my mom has been going down hill rapidly, they were married 59 yrs. I know at this rate she not going to last, and I feel helpless. I guess i'm asking how long will she last?

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My mother has had Parkinsons for about 13 years, dementia for about 6 along with a number of strokes over 15 years (3 big, many small, all of which she came back from). I cared for her for 4 years until, needing care 24/7, she went into a NH a year ago. In May she broke her hip and has been pretty much in a wheelchair since. Last week she had another stroke and is now deemed palliative. Most days she's totally confused and rambles. She sleeps most all of the time, barely eats, refuses to be bathed, has bed sores and is convinced her mother (who passed in 74) is often in her room. The staff care is wonderful and always upbeat but on speaking with the RN she said we just go day by day, hour by hour. She has a ring she wanted to give to a dear friend on her passing but the other day she gave it to me to take in to be cleaned (which I have done) and give it now. It's like she's preparing to pass and, frankly, I hope it's soon as she has no quality of life whatsoever. We're kinder to animals than to people - we'd never let a beloved pet suffer like that.
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My mom ended up passing away 2 weeks later, it happened really fast. We signed on with hospice the next week she went into a deep sleep for a week, then she expired with the family by her side. God is good, she didn't have to live months in her suffering.
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This is a most difficult stage, the end stage of life, for a caregiver to know what is right or wrong. In my nursing career, I have found that when a person is entering their end stage and has no appetite and eating and drinking are slowing, we need to listen to that. There will be many changes that take place in the patients body as it prepares one for their final day. This is a normal process that takes place. It may be reassuring to know that an individual that is not eating and drinking much knows what is best for them and there will be a more peaceful parting from this world with fewer fluids and food in there system. As a caregiver you are not neglectful. This is the point where "comfort" is the key to caregiving. It is difficult to remove our emotions from the situation, but we have to focus on what our patient/loved one desires.
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I can not tell you how long your Mom will last but I know she wants above all to be with her partner of so many years. Do not stand in her way, keep her comfortable , physically or with medications if needed. It is hard but let her go. love her while she is here and when she is gone. She will be watching over you and waiting till you can join her. We know nothing of the after life just as we know nothing of life before we were born but there must be something bigger than we are out there. We think of the pain the mother experiences giving birth
but we have no way of knowing what the baby experiences. They spend nine months in the womb, freely turning somersaults, kicking and sucking their thumbs and suddenly they are forced to go head down and squeezed into a claustrophobic position as they enter the birth canal. Pushed and squeezed for a few minutes or many hours. They don't know what to expect Suddenly they are expelled into a cold world of bright lights and strange noises. They scream in fear and some one stuffs a binky into their mouth . People mean well but things happen so fast. No one stops to consider the feelings of the helpless infant. The womb was free and warm. There were no restrictions the fetus could roam and explore. now they are tightly wrapped and the bright lights in the nursery are never dimmed. Some times they are attached to tubes and monitors and the person they are most attached to can no longer contact them intimately Many people are scared of hospice they think and say they give you morphine and then you die. I am here to tell you it is true. Hospice does give you morphine and you do die, You are in hospice because you are going to die but there is more to dyeing than a trip to the funeral home and a nice service and lots of flowers. We do not know what happens when we die but many people have had near death experiences and it is rarely described as being frightening or painful. Hospice helps you to be comfortable in body and spirit. if you need medicines they get them, if you need spiritual care, it is available, if you need help putting your affairs in order help is forthcoming. Your caregivers may need help with practical nursing tasks, then hospice is there. Hospice is a shoulder to learn on, a source of knowledge, a non judgementel friend and above all someone to share your grief in the middle of the night. Hospice will always tell you the truth so don't be afraid to ask difficult questions. Above all hospice does not judge or criticize they work with what they have got and always in the best interests of the patient and family. Every hospice will not have all the resources you might like it is all governed by money like everything else but if they are any good they will bring you much comfort
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My mom was fine with hospice bcuz they provided her with a bed that help her sit up, and she knew I needed help with her bathing. My mom ended up passing away August 3th about 2 weeks after hospice came to help, they were great I actually had nurses around the clock for the last 5 days of her life, she pass really fast, I didn't even know she was going to pass that quickly, i just brought in hospice to help me bath her, I feel she pass from a broken heart missing my Dad who passed May 4 of this year. God is good; No more pain and their resting together
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I love her, but her response to hospice is that it is so "Morbid" I tried telling her that Hospice is wonderful, you can get a lot of things to help with and she still refuses it- she wants to go happy. Then everything I help her with, she isn't happy about it. I was wondering if anyone else goes through this with their parent.
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What if my mom doesn't want to be on hospice? Everything that everyone is saying, is what my mom is going through. She is kind of difficult to take care of!!!
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So my mom was seen 2day by the Dr, he agree with me that she should be on the hospice program, thank you all 4 ur input. i'll keep u posted....
@bls0901 hospice gave me a book like a guide of stages of what a person feel like toward the end of their life, like my dad a day b4 passing all he did was sleep, i kept warming up his soup to feed him, but according to the pamphlet they are more in the next world than here with us.
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Regarding Hospice principles: I have Hospice for my 93 year old husband with either Alzheimer's or Vascular Dementia (not sure which it is). I'd say he is in late stage of either one. He is sleeping more than he was a few months ago (16-20 hours out of 24), and eating very little solids (and only when I spoon-feed him). Otherwise, he exists on about 600-700 calories from shakes, nutrition drinks, etc. Hospice tells me that when he refuses all food and drink do not coax him to take some because his body is telling him it's time to shut down, and that he will not feel hunger or thirst. But how do we really know this? To me, it seems that the natural human response is to do everything to sustain life, and that the Hospice approach seems to come down to simply watching my husband starve to death. I'm not sure I can do this. I don't think I would drop Hospice in order to allow a feeding tube, just for the sake of keeping him alive a few more weeks or months, but neither do I want to see him die slowly of lack of food and fluids. Forgive me if I've gone off subject.
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I will 3rd that. bring in Hospice!
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It is very hard to sit by feeling helpless while respecting a loved one's wishes to let nature take it course. It is natural to want to do something so the situation you are in is emotionally very difficult. Is your mother in hospice care? Hospice workers are specially trained to deal with situations like this and might be able to offer you the support you need.
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Your mom is going through the natural process of death and you need to respect that. Her body is telling her it's time to start closing down and that's why she's sleeping so much and refusing to eat. My dad had Parkinson's and when he got to this stage we called in hospice (best people ever!) and let him die with respect and dignity. It's a hard thing to do, but for your mom's sake, you need to do it.
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My Dad had Parkinson's also and was in a nursing home. My mother was/is still alive. Drs, tried multiple times to convince my mother to let them put in a feeding tube thankfully my mother always called me to ask my advice and I always said "No Way"! A feeding tube allows the nursing home to tend to the person once or so a day when they hook up a new bag, refusing to allow them to do it at the very least gave my Dad human contact 3 times a day even if it was only for feeding him his meals. It was not until my Dad aspirated food into his lungs because of Parkinson's that we agreed to let them put in a tube. He lived from June until the following January with a tube. He was in the nursing home for nearly 7 years. My Dad had the will to live, if your mother does not you should honor her wishes if she is of sound mind to make such a decision. My guess is that she is still grieving and needs extra attention from those who love her. Maybe "Meals on Wheels" or other seniors come to visit her often so she is not so alone all of the time will help.
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