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My sister has dementia and Alzheimer's disease caused from three strokes. She also has severe coronary disease. She now weighs 88 lbs. and has trouble eating. She's paralyzed on the left side. She was able to walk until recently. She seems to have gotten a lot weaker. She now spends more sleeping. The nursing home has called Hospice in for an evaluation and she has been accepted. I've asked the nurses what all this means. The answer I got is that she isn't dying and that Hospice will let the family know when it gets to that point. Also they say she can been in Hospice for up to three years. The nurses say that she'll get more intensive care than what they give her. Medicare & Medicaid limit the drugs that they (nursing home, can give her. I live 600 miles away & it's difficult for me to get there to access her myself. I feel that they aren't telling me everything. She has a husband & daughter there but I don't feel they are in the position to really understand/accept the inevitable. Has anyone else experienced a love one going into Hospice if the end isn't near? Thanks you for your responses.

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It certainly is an option. Hospice will deliver all the supplies you need prior to the arrival of your loved one. It won't cost you anything either. They will come in to check on your Mom about 3 x's/day. They also provide all the medicine you'll need. You'll still need support from family/friends to care for her.

It still seems like a dream. I can't believe she's gone...Thank you.
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Georgia girl, what a wonderful thing you did. I'm sorry for your loss. It's not easy to organize all that, but you did what you promised and I take my hat off to you. I just signed my mom into Hospice and didn't even know that taking her home from the SNF to die was an option. Thank you for sharing. You are an inspiration
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Georgia girl, I am so sorry for your loss but thankful you were able to be with your mother before she passed and to be able to get her home to die.

For others faced with the decision to call in Hospice it is never too early. If they don't feel their loved one COULD die within six months the won't admit them then end of story till the reach the appropriate condition for admission.
In this case the Mom was showing serious signs of decline of which continuing weight loss is a serious consideration. Of course with the proper care people can and do improve enough to be discharged and go home.
Hospice nurses are frequently referred to as "The Angels of death" true they are frequently present but do nothing to achieve that end.
When someone enters a hospice program they may continue to be cared for by their own Dr or else by the hospice medical directer. Regular medications are only discontinued when they are seen as a burden rather than a help for their condition. Hospice professionals recognize that differing amounts of medications such as those for pain and anxiety may need to be given in larger doses at the end of life as these symptoms frequently increase greatly in just a few hours and no one wants to watch their loved one die in pain or distress.
Again so sorry for your loss Georgiagirl especially as you were hoping Mom still had some good time ahead of her. Sadly it was not to be.I hope you get good support for your grief from hospice. please take advantage of their grief counseling.
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Sorry to hear............
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Sooty to hear about your sister. I'm glad she made it home. Thanks for sharing your story.
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My mom is also in a nursing facility. She got a bad flu last November and stopped eating and was losing weight and her lab work was totally off the wall. She slept most of the time. Hospice was called in.she had a nurses aide 5 days a week for an hour and the hospice nurse saw her weekly. They took her off some of her meds. Long story short--6 months later, she gained weight, cleared up mentally, her labs got better and Hospice discharged her...I was sorry to see them go. I think the extra attention helped her recover. They will come back at any time if she starts to decline again. so it is not always the "last" resort. As long as the patient meets their criteria they can be recertified to stay in the program.
Georgiagirl, I am sorry for your loss. I wish you could have had the same outcome that we have had with hospice.
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I wanted to let you all know my sister passed away on Oct.4, 2016. I got to IN on Sunday she knew us but was getting ready to pass on. On Tuesday evening I spoke with the Hospice Nurse about taking her home. They got her home on Wednesday at around 4:00 pm and she was gone by 7:45 pm. I believe she knew she was home. Thank you all for your words of support.
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Gladimhere, Thank you. I think it'll help my depression over the whole situation. I saw her in May but I feel I need to go again. Your right you just never know when her passing might happen.

She told me last time I saw her that she didn't want to die in the nursing home. I told her that I would make sure when that time comes that she'll be able to go home. I also told her I would come help take care of her. And I will do exactly that if I have the families' support.
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Georgia, I was going to suggest you go see her. We never know and would feel terribly depressed if they pass, we had the chance to see them once more and didn't go. Travel safe.
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Thank you, thank you. I am so glad I found this site. It's so helpful to talk with people who have experienced these issues. I have made the decision to go to visit her. I want to spend time with her before she totally slips away mentally. I can't talk with on the phone anymore & I miss those times so much. I've been very depressed since I heard Hospice has been called in. I am sure ya'll can relate. Thanks again my friends.
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Georgiagirl, it really is a shock to accept hospice. My husband's wonderful geriatrician often treated him over the phone, knowing how hard it is to bring an elderly dementia patient into the office. I well remember the day I called and left a message for her of my husband's symptoms. The nurse who called back offered to call a prescription in for him, and she also said that the doctor would sign a hospice order when I thought it was appropriate. Hospice! The H word! Even though I knew his condition was progressive and that it was getting worse and even though I planned on using hospice care, that simple mention of it over the phone was a shock. Oh my! I got past the shock and took action, but I still remember the feeling.

Be patient with yourself, Georgiagirl. Be patient with your family members. We all come to terms with impending death in our own ways. Shock is a typical first reaction.
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Georgiagirl, go with your gut. Let the niece and BIL ruminate for a while, they will learn to take one day at a time as I'm sure you did. The rest is up to God.
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Thank you all for your answers & hugs. It's very difficult to accept your love one is slipping away from you. I've seen & cared for both my Father, Mother and Father-in-law during their dying process. I think I recognize better than my brother-in-law & niece that the dying process has started for my sister. My niece got very upset with me when I was somewhat upset about Hospice being called in. I was just shocked to hear this news. I used Hospice for my Mother & understand that they are the Angel's of Death. I am thankful that she'll have better care but it's hard for to believe she's going to get better. I have to stay positive for my family which is hard to do. As I want them to be prepared for what I believe is the end of life for her. Thanks so much for answering my questions.
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Hospice is usually 6 months. Sometimes patients improve with the additional care hospice provides. It's impossible to predict death, days, weeks, months, but from your description of your sisters medical issues it clearly seems that it is time to make her comfortable, control any pain she may have and let this come to an end. That is what hospice does.
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Sweetie she's had 3 strokes, is partially paralyzed, has trouble swallowing and is down to 88 lbs, it's time. If you feel there is a lack of truth telling from the nurses it may be that she is much closer to the end than you realize. Often people will tell you they waited too long before calling in hospice, be glad she will get the benefit before she is in her final days. (hugs)
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I think what the nursing home means by "she isn't dying" is that the process of the body shutting down organ by organ has not begun. It is not time to hold a bedside vigil. She may live many months.

The hospice evaluation determined that she is in the final stage of her diseases, that there is no chance of recovery, and that she is likely to die within six months. This evaluation is based on a lot of experience with the dying, but it is not infallible.

My mother was on hospice care in a nursing home. She got additional attention, helpful equipment, and a lifting of the red tape needed to manage her drugs. It was a positive experience. After 3 months she no longer appeared to be at the end of her life span and she was discharged from the program. She lived another 2+ years.
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