Help with Hospice

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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.


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.
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!

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.
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.
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.
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
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.
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.
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.
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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