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"About Hospice"

as shared by Volunteers with and

Based on their own personal experience with Hospice:

"A patient who is eligible for Hospice has to have an end stage diagnosis and not seeking curative treatment. Some Hospice's will have an Open Access program where patients can receive chemo therapy or even dialysis but it is not curative. It is considered palliative which means that it is done for comfort. 

Many people panic when they hear the word Hospice. I have had many patients who have graduated from Hospice, and some who were showing improvement and passed away shortly thereafter. Just because the prognosis has to be 6 months or less, they will not necessarily discharge you if it is longer. There is certain criteria that must be met. 

There are different settings for Hospice patients. Some families choose to keep the patient in their home where under medicare guidelines the patient must be seen every 14 days. If the patient is sick, and experiencing end-of-life symptoms, they really try to come out every day to monitor. 

A common misconception is that you cannot be a full code and you cannot go to the hospital. You most certainly can be a full code, however, many families decide against it because it is painful especially with certain disease processes and with older age. And you are able to come on and off of Hospice at any time. Because the medical center cannot double bill you would if admitted to the hospital have to temporarily revocate the Hospice benefit while in the hospital or if surgery was needed. But once you have been discharged you're able to go back on.

There are certain levels of care. As described above there is regular home care, GIP which is set in the hospital. Hospice contracts certain beds in the hospital where Hospice patients can be cared for. Crisis Care or Continuous Care is done in the patient's home setting whether that's a facility or house. It is where a nurse will sit with you 24 hours a day as you're approaching end-of-life. With Continuous Care you are usually on what they call around the clock medication. Sometimes it is the patients or families wish to not have their loved one pass away in the home and they can a l so go to what's called an inpatient care center. It is staffed with nurses 24/7 and it can be used as respite, symptom management or until the patient passes. 

They have what's called a comfort pack or a comfort kit. I highly recommend getting it and not needing it than needing it and not having it. It's for symptom control. A lot of people get very concerned about when they hear morphine. That medication has many benefits to it. Depending on the diagnosis it can really help with pain. It's good for when the patient is no longer able to swallow. It comes in liquid form, and it will absorb under the tongue so there is no need to swallow the medication. For medications that need to be crushed up there is something called a Macy Catheter and the medication is absorbed through the digestive tract. Towards the end of life our respiration can get out of control, and the morphine can help with that in addition to combating pain. It's always better to stay ahead of the pain then to try and play catch up. When we put it off, often times we need more and more when a lower dose at an earlier time would have managed the symptoms. Someone might take a medication for pain on a regular daily basis (especially cancer patients) and we want to make sure we are making sure they aren't constipated. That can cause a lot of problems. 
There are many resources with Hospice. The Have social workers, emergent nurses for over nights if a problem arises, case managers who are your nurses for the day, Chaplains, CNAS, some have physical therapy/occupational therapy, massage therapy, music therapy to name a few. 

After your loved one has passed, Hospice will send out a nurse to confirm. If you need someone to sit with you because sometimes a nurse might take some time to get out there especially if a nurse is with another patient at that time, you want to request for supportive care. That can be a social worker (they can help you choose a funeral home), chaplain, or music therapist. My mom read online not to call right away abs I'm so glad we didn't. We spent time talking to my dad, telling him how much we loved him, that he would be missed, that we would be okay. We played his favorite songs and my mom and I talked about some of our favorite memories before we called. I'm so glad we did. 

I would have an idea as to what you would like your loved one to be dressed in. You would be shocked how they wanted to send my dad to the funeral home. Absolutely unacceptable."

•TikTok : Hospice Nurse Julie (she shows videos but will give trigger warnings.
•Teepa Snow for dementia is amazing. I went to one of her seminars. (she has many free videos on YouTube)
•The Alzheimer's Association
•Walk To End Alzheimer's
•Dementia/Alzheimersl's Family Caregiver Support
•The Association for Frontotemporal Dementia (AFTD)
•Eventbrite has a lot of groups too 

•Gone From My Sight
•The 11th Hour 
•Pain at the End of Life
•A Time to Live
•My Friend, I Care

grief podcast: "Grief Walking"


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