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My 98 yr old mom started on hospice this week. I thought that there would be more coverage but Medicare only pays for home health aides 3-5 times per week for 2 hours and visits by the nurse 1-2 times a week. I am looking into some private care so I can get out at night or during the weekend for some respite.
They started mom on low dose of morphine. First time it worked well, she slept all night and had some relief from pain. Second night, didn't sleep and had some pain not as much relief as night before. Gave her more this morning and is now sleeping.
Not sure how long this is going to go on. I just thought that hospice would be around more.
Anyone have any advice or experience with hospice???
PS I live in New York.
oneandonly

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I found this and thought I would share it with everyone.
http://nihpublications.od.nih.gov/PublicationDetails.aspx?PubID=5346
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Reading some of the posts regarding hospice care made me compels me to clarify some things about hospice care. I am a hospice nurse. The one I am with is truly committed to providing comfort and peace to the patient and their family/caregiver. We have a team of people who work closely with the patient. We don't "push" morphine to hasten death. It is used to provide relief from pain and to ease breathing difficulties.
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Have you considered getting your Mom hospice while staying in a nursing home? Not sure how you feel about that but it was the only solution that worked for my Mom. I no longer feel guilty about not being able to care for her in my home full-time. Hospice care does an excellent job at the nursing home. I go almost everyday and yet I still get to go home and spend time with my family.
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It is not that the people from hospice that were doing anything really wrong, it is my mom who drives everyone nuts. She has been on alot of different meds for pain and finds something wrong with all of them. She is a major control freak and is still of sound mind and wants to be in control of every situation while she still can. We have had a lot of issues and I go to therapy to try and help me sort thru everything.
I hired a private home aide who came on Tuesday since my mom now has trouble getting in and out of bed. I bet that soon she will find something she does not like about her too.
I feel that it is always a no win with her. Her way or the high way except that she does need my help now more than before.
I just don't know how much more of this I can take. It was bad but not this bad before she moved in with me 5 years ago but as she gets worse she makes my life hell which is where I am going since I keep thinking that I can't wait till this is over but it is not coming any time soon.
There has to be a better way!!!!
oneandonly
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We had hospice in home for my mother in law for 1 week before she passed. It wasn't what I expected either, had kinda the same scenerio with the nurse, who was on kemo, bless her heart but they should never have paired her up as my m.I.l as my mother in law weighed almost 400 lbs from all the fluid, the nurse was in to weak of a condition to help us with her care. She came in for 5 min typed on her computer then left. One occasion she was there for ten and accualy told my husband she was doing comp work on another patient. The bath aid helped me a lot but when we asked if someone could sit with her while I went home to shower(we live on the same block) I was told they didn't sit with people. So finaly other brothers and sisters complained,they sent. A social worker and another nurse I had never met out to have a meeting with us and explain that the hospice was to show us how to care for her and to provide the meds!!! They only do rispite if the person has been on it for a length of time. Really I only wanted 30 min to take a shower. We had been with her in the hospital for a month. And struggling to care for her for some weeks before that. Anyways I have seen wonderful hospice programs that do help more, the nurse will spend the time to check them out and talk to them, and aids who will come and sit with the paitent to help the caregiver get small break. I think it depends on the company.
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omg I can't imagine Perhaps if you call a different hospice provider in your area their social worker could advise you. During my next nurse visit from Mom's hospice I will ask how they would advise someone in your shoes.
There is a limit to what anyone can handle.You need help,I hope things turn around for you
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Just wanted to let you all know that my mom took herself off of morphine and hospice today!!!(She was only on for 2 weeks) I could have killed her. She said that she didn't want to take the morphine anymore and that is wasn't helping. That is bull. She was begging to go on it. She thought they would come and give her an injection and that it would be it. When she found out it was drops orally, she didn't like that. She wants to be in control and if I give her the meds she is not. She said she wants to die but I am starting to believe that she really doesn't and is just saying that. She is going back on valium which everyone told her is not for pain but she thinks she knows everything. Control again. I thought we were going forward and instead we are going backwards. I am so upset I can't think straight!!!
I guess this will never end..........she is immortal..........
I don't know how much more of this I can handle.....
oneandonly
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My grandmother is in home hospice. We have a nurse 1x week, and a nurse aid for bathing 3x week. Our hospice center also coordinates a network of volunteers who will come in to sit with grandma 3-4 hours per week. In some cases we can get more than one volunteer if we have to.

Hospice has been a life-saver for us.
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We had hospice, but got off as they were not providing support / care. The nurse actually had her husband drive her and would come in while he waited with the car running and her car door open. They were always in a rush, and well a lot of issues. However, there are several levels on hospice care and they can provide nursing care more hours if the condition warrants. And they can transfer patient to nursing home for up to 5 days to provide respite. They can do it. It is a Medicare benefit. They just have to work to get it done, and some will not put that much effort in to care - they treat a patient not a caregiver unfortunately.
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I guess Medicare pays for it . It is nothing for free in this country. And you are right their are afraid of strangers in the house. They are more agitated. I don't have good experience with Hospice. I think it is just a legal way of pushing morphine and die faster. I got no help just" You are doing good job". Are social workers, nurses, aides if ask for one, chaplain. It is a lot of traffic and you cannot concentrate in caregiving because you have to talk with them.
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In addition to considering agencies who provide the kind of help you need, you might also consider people who are independent caregivers, so to speak. Do you deal with a Hospice social worker as part of the folks providing your Mom's care? You could ask them if they have any caregivers they would recommend from their experience. I just did that with my Mom--unfortunately, many of those folks are already working with others who need them and weren't available. Good luck.
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I actually just had a really tough day. My mom would not take her morphine last night. She thinks because the morphine helped her pain a little that if she didn't take it she would go quicker. She does have a weird way of thinking!!!
The hospice nurse came today( I had called her this morning) and explained to her that is not the way it works.
The hospice I am using seems ok. We just started last week. In my state, New York , the services provided seem the same for each hospice in the area.
I am trying to get some outside help so that I can do everyday things and leave her. Hospice only goes so far. It is not a question of money but I thought that they were more involved in the day to day care.
Maybe I should just check to see if there are any other hospices in my area that offer more, but I doubt it.
Basically, if you have no one and nothing a hospital hospice will help .
Any more comments are greatly appreciated.
oneandonly
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Lilliput, That's a good point about there being more than one hospice company in the area. I will try calling the other one we have near here and also your idea to ask other people who they used and were they happy with them. thanks, ssk
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Each state is different and each Hospice company has their own way of doing things. Is there more than one company that provides Hopsice care in your town? I would ask. When I first used Medicare aftercare for Mom, the hospital recommended a company (of course, they were affiliated with the hospital). I did not care for their services. So I asked around and found another co. that was great.
My friend cared for his grandmother at the end of her life. He actually had hospice services for nearly 2 years! Toward the end of her life, staff members were there constantly.
I would start asking around. Get references from people in your area that have gone through this. I also quizzed Mom's Med. social worker. Ask questions the right way, ie: "If this was your Mom who would you contact for her care?" If you are persistent, they will finally give you an honest assessment.
I, too, thought end of life care was more inclusive. Like everything else in life, quality varies.
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Hospice does have a sliding scale that they will use if someone has an issue with money and they also give service free to those that just don't have money- this is payed for by donations.
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Thanks for your comments. We do belong to a church however I need someone with medical knowledge to help her to bathroom,meds etc. when I am not here. They can only send someone to keep her company and I need a little more than that. I am interviewing someone on Sat. to help. Hopefully, she will fit the bill.
As far as when she is gone I have been her only caregiver for the last almost 5 years and I am an only. I know that I have done everything I can possibly do for her. I think she is at the end of her journey so I want to be sure that she doesn't suffer. She is a tough lady and has a problem with outside help so getting hospice is a GIGANTIC step for her. I have never done hospice so I am in the dark about alot of things.
Thank you all and I welcome all comments.
oneandonly
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Do you or your mother belong to a church or did she attend a senior center of any sort? Don't be afraid to ask for volunteers from these resources to ask for someone to sit with your mom. There are many, many people who find it an honor to do such a thing, and you can repay the favor someday.

Remember that someday when she is gone, this stressful time will be but a blip in the big picture of her life, and you will be glad you did all you could to follow her wishes. I am proud of you!

Jean
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Hi, I have hospice in for my mom with alzheimers and they only give me a cna 1 hr x 6days a week and nurse visit. Sometimes cleaning for 2 hrs. In the initial visit they said that they don't come in for longer periods of time to give us a real break. And also, they send different people and at different times of day so it's confusing. They are mostly nice people and do help a lot, but, like you said, not really enough to give the primary caregiver a break. I'm in Mass. I'm going to talk to their social worker next week to go over any other programs that we might quailfy for.
Good luck.
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