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Hi - I need some help in figuring out what to do about hospice. We had someone come talk with us in the hospital from someplace, but now I understand there are more than 1 hospice type programs in each area.

How do I go about finding out about the different hospices in a given area? I just did a search, but only came up with the visiting nursing association. So I'm not sure if I am searching for the right thing.

The real question is what is given by each hospice program (and what one qualifies under the insurance plan) - is it standard to just be allowed up to 4 hrs per day of a home health aide? The one program we talked wtih said up to 4 hrs a day, and then another 4 potential from a combination of home health aide, spiritual advisor, volunteer and visiting nurse. How ofter should we expect a visiting nurse to come?

We were also trying to fgure out if he goes into home hospice can he later switch to in patient hospice? He really wants to go home (he is in rehab now trying to get him to strengthen his legs). And I want to honor his wishes, but my mom cannot care for him. There needs to be a way to get someone to care for him 24x7 so that she does not have to. The only way that would be wold be for us to pay for it or for him to get admitted to to in patient hospice.

Another question, for a home health aide - right now its pretty much taking 2 people to move him in/out of bed/wheelchair. Can one person realistically do this? How will that work if not, will he be bed bound then? Will my mother, me or my sibilings be required to be there at all times to help? My brother works, my sister is in school, and I'm job searching/interviewing and can't put that aside.

I just feel so confused. Any advice is well appreciated.

Thanks

Paula

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PAula I dont really have any advice but Do have prayers and thoughts for now..

We never got to use hospice in our situation. In my travel;s and research her though, I found a link that MIGHT help some!!! Or might be a good starting point for you right now!

http://www.nhpco.org/templates/1/homepage.cfm

This is a link for national Hospice and palliative care organization. They might have some answers to what you are looking for or at least some where to start looking for info for the time being!

If i can help with anything, just drop me a PM I check in several times a day!!

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Paula, I can't answer most of your questions either, but second Ned's suggestion. I did find out recently that there were more than one hospice in our area. I used one to have my port flushed. I chose the one with the VNA because I go to a cancer support group there and my daughter is a registered nurse. I do know that she is trained to move people much larger than she altho there are times when it takes two people. I am sorry your family is having to deal with this and hope you find assistance very soon. I know a number of people on this site are more familiar with hospice and hope someone comes in soon with more info.

Judy in Key West

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Paula,

Hospices can be very different so I do highly recommend that you do research on the options in your area. A social worker from the hospital should be able to give you information on them all and I would ask each to come and visit with you just like the one already has. I think you get a better feel for where the best fit will be.

Generally there is an admission visit where the nurse will come out and assess your Dad and make recommendations for the amount of care he will need. The consider not only your Dad's condition but also the caregiver's ability to provide the needed care and the environment i.e. lots of steps, safe bathing, etc. It could be that at that point they recommend inpatient for your Dad but if not they will tell you how many hours of care per day/week that they recommend.

Medicare pays a flat rate for hospice care so the aide, nurse, social worker, chaplain and then bereavement services are all lumped together. The transition from home care hospice to inpatient hospice is typically seamless, except for the change in the caregivers.

Good luck and my thoughts and prayers are with you and your family.

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Paula,

When it was time to call Hospice for my Dad,it was actually done by his Oncologist.

Hospice called us and set up an appointment to meet with us and get things started.

His Oncologist was a God send. It was a relief at the time that he offered to take of this for us.

Good Luck

Jean

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Hi Paula - there are generally two types of hospice - a medical hospice like Katy mentioned and a support hospice. Depending on how the support hospice is structured, you should be able to use both. The link to the national hospice is a good way to go to find something available in your area.

There should be someone in care management at the hospital to help you with the medical hospice. Theytypically provide nursing care (supervised by your physician), home health aides, spiritual care, bereavement, and volunteers. Some sevices are covered by insurance. The medical hospice in our area takes insurance only and writes off any balance due.

Support hospice offers the non-medical care - sitters and aides, spiritual and bereavement support. These tend to rely on donations to exist and do not charge patients. Most of the folks in the organization are volunteers.

I would strongly urge to look for both - you can use both services as well as services such as meals on wheels if your mom and dad qualify. Hospice should help with that. If you don't have a hospice in your immediat area, look for one in a larger city. They will most likely have volunteers who can come to your area.

Hospice can also help with equipment at home like a hospital bed, which makes it easier to get patients in and out of wheelchairs, as well as other assistive devices. Most of the volunteers are family members who have lost a loved one, so they are wonderfully sensitive.

If you still cannot find a hospice in your area, call the one at our hospital and ask them for advice on how to go about finding one. It is Mary Washington Hospice in Fredericksburg, VA, 540.741.1667. They may be able to point you in the right direction.

Good luck. I will keep you and your family in my thoughts and prayers.

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Paula,

I agree with Ned to seek out the social worker at the hospital. Sometimes certain hospitals have hospice units within and can allow the patients to stay there if it is not for the long term. Also, in addition to the VNA, I am not sure of your religious beliefs but maybe check in your area for places that are run by religious non-profit places etc. For example we have a place run by nuns who take in those in need to care for them in our area. I will pray for you and hope you find peace in whatever you have to do and know that there is no wrong decision in this although it feels like you never know what the right thing is somehow God's plan takes over.

Marci

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I'm on the bandwagon with those people who said listen to Ned.

When we decided to get hospice care, our hospital social worker did all the leg work for me. Not only did she have all the information on the different hospice organizations and what they provided, but she called my insurance for me, found out that my insurance only covered one home hospice provider and one in-patient provider. She confirmed that if we went home and then changed our minds, we could always transfer to the in-patient provider services.

She was an absolute angel finding out all the info I needed at a time when I didn't have the time, energy or mental strength to weed through the info myself. Take advantage of the resources out there for you.

We opted for home hospice care, and although Keith passed away the morning after coming home, before the hospice nurse got there for the assessment, I knew the routine was she was going to come in and evaluate what his condition and needs were. We were approved for twice a week visits, but if her assessment was different she could request and get approval from insurance for much more, including 2 staff personnel per visit. I do however think that 24/7 nursing care for hospice is really rare without doing private care and paying for it. Insurance seems to be a bit cheap and will work up to what they feel is the minimum requirements.

I'm sending you lots of prayers.

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Ned is definitely on the right track with the information he gave you. Dennis' oncologist recommended a hospice group for us and he even made all of the calls to arrange for them to begin caring for Dennis. We were very fortunate to have a wonderful and caring hospice experience. Dennis wanted to remain at home and we were able to fulfill his wishes, although they did tell us he could be transferred to an in-patient facility if I wasn't able to continue the in-home care.

I'll be keeping you in my prayers.

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Thanks everyone for your great advice. I've called a number of hospices (thanks Ned) and have a few more to call. My mom called a few home healthcare agencies. Does anyone know if Medicare covers home health care if Hospice is also called in?

Paula

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