Helping Those Who Care for Parkinson's Patients
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I am replying to Mary's inquiry about Hospice because I want to leave Punky's topic clear of any other questions. Hospice is generally not suggested by the physician, although I am sure some do. In many cases the caregiver may have to ask the physician if it is ok to involve Hospice. It does require a physician's referral. There is generally no problem getting the referral. I suspect that many physicians are just reluctant to bring it up. Hospice is for anyone who has an advanced, incurrable disease. When they first started the patient had to be very close to death but that is not the case today. The patient has to be advanced in the disease process. Hospice evaluates the patient initially and again every four months to see if they are still eligible for services. Some people no longer need the services at a particular time but may pick it up again later. In most cases Hospice certifies the need for ther pt to continue. It is covered by Medicare. I never was billed a penny for the services. What they do: weekly evaluation by a RN (same person usually), provide all medications related to the PD free of charge, supply all medical supplies such as pads, depends, hospital bed, bedside commode, etc., provide an aide to bathe and shave the patient twice weekly, serve as laison between the physician and patient (they have much better luck getting through to the doc), and provide respite care in the inpatient setting. If you want to go on vacation or just need a break the patient is cared for at the Hospice facility, which looks like a hotel. If I remember correctly you get a week of free inpatient service every 6 months and if you need longer the charge is something like $100.00/day. Perhaps the most important thing Hospice does is support the caregiver. It is someone to talk to anytime 24hrs/day about your concerns, saddness, fears, etc. As Punky so well put it they are there at the end to tell you what is going on and to provide medication to the patient that keeps them calm and comfortable. I think Hospice is an under utilized service and one that we caregivers need to look into. |
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Thank you so much for this very valuable info. I will keep this for future reference. I hope you had an enjoyable vacation. |
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| Thank you - the vacation was wonderful but anything but restful. We started a tour every morning at 7 AM. I have seen enough temples and burial chambers for awhile! |
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Annwood, thank you for your reply on hospice. Much appreciated, Mary Also, I am glad you put it in a new topic area. I apologize to Punky for bringing up this question under the topic in tribute to her husband. Not too cool on my part - just wasn't thinking. I apologize for my insensitivity on that. So sorry, Mary |
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| Thank you for this information. Esp. the part about it being for anyone with an advanced, incurable disease. My mom's docs have this idea that you have to be at death's door in order to be eligible. They actually did refuse to write the order. I called a hospice center and they told me that they would come and do an assessment and if they felt hospice was warranted, they would talk to the doctor. This would enable me to keep my mom at her assisted living and not have an expensive caregiver. The assisted living folks would take over feeding her. This is something they cannot do (by law apparently) unless hospice is involved. A couple of other things they told me is that if they were involved, there would be no therapy and no ER. If I called an ambulance, then she would cease to be on hospice, which I think at this point, would be a blessing. ER (for her) often does more harm than good. |
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| Mary, don't worry about this. We often start new threads on a post. I just wanted to make sure Punky's stayed on topic. |
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| sooboo, you stated in your post that you were told if you called an ambulance, hospice would cease. Is hospice 24/7 so that they would handle any emergency at your home? Are hospice employees medically trained? I have a lot to learn about hospice. I am not at that point where it is necessary but feel it is inevitable with this disease. Thank you, Mary |
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| Mary, Most of the hospice people are RN's. The philosophy of hospice is to do nothing to prolong life so there are no trips to the ER, no IV's and no ongoing therapy. They do allow antibiotics orally and oxygen to make the pt comfortable. If there is a problem you call the hospice nurse and she speaks with the physician. One has to be accepting of the fact that the disease is terminal and that no heroic measures will be taken. |