Hospice care: Here in the US has anyone... - Cure Parkinson's

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Hospice care

Prayingforacure profile image
6 Replies

Here in the US has anyone needed to call in hospice, I would like to hear from others that needed to do this. It is okay to message me privately. It is hard for me to post about it openly in the forum. Thanks.

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Prayingforacure profile image
Prayingforacure
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6 Replies
Kadie57 profile image
Kadie57

The hospice organization is wonderful in our part of the country Wisconsin.

gettome profile image
gettome

My wife was under Hospice care for the last week of her life. The hospice care was in our house under the supervision of the Visiting Nurse service. There were other options such as going to a Hospice Facility or staying in the hospital. HOPE THIS WAS HELPFULL.

Allyn profile image
Allyn

Do not hesitate to call Hospice. It is a wonderful organization and can do so much for a family in need. More than a family even considers they need. I waited too long to call for help for my mom. Not to say she did without the service, but I could have had so much more help for so much longer, if I had called sooner. Do not think of it as "giving up" Think of it as the best care.

cjsg profile image
cjsg

When my mother was very ill we brought her home and had hospice help care for her. This was in Iowa so I dk how it works in other states. Hospice takes over the health care of the person. They have an arrangement with Medicare. If the person in hospice needs a doctor you call hospice. If you think the sick person needs to go to the ER, you call hospice first. They provide any medications. If you need diapers, a adjustable bed, gloves etc. they provide them. They will have someone come in to give a bath and wash hair, even help keep the house up doing dishes or light cleaning. The hospice we had did not provide 24/7 care unless the main care giver needed a break. When I had to return to my home to care for my husband, my sister had my Mother moved to a nursing home in another county and had her have hospice care there .Because my mother was moved to a different county, the hospice provider had to be changed to the one that worked with the nursing home. It was a conflict of interest between the nursing home and the hospice care. The nursing home made my mother eat when she didn't want to. They had her go to the ER to put in a feeding port. They forced her to take meds when she didn't want to. We could not change hospice care again without waiting 90 days to do it. We couldn't bring her back home. because there would be no care for her. The first hospice care group we had was wonderful. The people were very loving caring people. The second not so good. There are different hospice groups, and they should be interviewed just like you would when you are considering a new doctor. Hospice also provides grief counseling if you want it. It is a very good option when caring for someone is to hard on you. I was told that a person can be in hospice care for years, and can go out of hospice care if they get better. You sign a contract with them so make sure you know all the ins and outs. Saying all that I think hospice provides much needed services and allows a ill person more dignity than a hospital or nursing home.

quirkyme profile image
quirkyme

former hospice chaplain here, feel free to message me privately. Hospice comes in and sees if the person is 'hospice appropriate' according to medicare guidelines. In my 6 years doing hospice care as part of a team, we had people who were 'not ready' but were followed and referred for other services (palliative care now available in some hospitals, which is just treatment to make people more comfortable). We also discharged many people who got better. One woman is still alive and doing well some 5-6 years later. We also had people interview us and get the info they needed to make choices and then call us months and month's later.

A good hospice should help you set personal goals, including pain levels you are willing to tolerate if there is a tradeoff between pain control and being able to interact with people. It's patient and family centered. The nurses at the VNA (Visiting Nurses) where I worked were caring and considerate. I wouldn't have worked their if I'd seen anything going on that I thought unethical. Time at the end of our lives can be fulfilling as one does a life review, reconcile with people, if needed, talk about your values in life, and so much more.

quirkyme profile image
quirkyme

more quirky me:

What the nursing home did was unethical. People who are dying have their gastro-intestinal system shutting down, so eating can be painful. And yes, I have heard of nursing homes having their own in-house hospice set up and patients and families not given choices (they are mandated to offer choices). Putting in a feeding port is just wrong if the patient and or family doesn't want it. What ends up happening is that the patient's dying is prolonged along with their suffering. That's cruel in my book. Know that you can complain to your state medical society or elder affairs in your state. Or medicare. If your mother had a DNR (do not resuscitate) order that should have prevented this intrusive care.

more info on hospice here: hospicefed.org/

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