Hey Everybody, has anyone used or is using palliative care for their loved one? Can you offer me any information or advice on palliative care?
I am in desperate need of help and I have reached out to my mother's radiation oncologist for an order for palliative care and I am waiting for response but I could really use any information and help you all have to offer on palliative care.
My mother has stage 4 lung cancer that spread to her spine and brain. Surgery took a portion of the cancerous spinal tumor and radiation eradicated the rest of the spinal tumor however her lung cancer is growing and inoperable because of it's location and her brain tumors are growing. She just did a second round of brain radiation and is no longer even able to stand, she has gotten so much worse and it is terrifying so I am looking to get palliative care. Her condition is terminal and she is needing a level of care I can no longer provide alone.
Thank you all in advance for your information and help on palliative care <3
http://www.nationalhospicelocator.com/hospices/florida/north-port
Or you can click the "find care" tab on this site and select hospice.
Hospice or palliative care is not going to provide 24/7 care. They will provide a bath aide, social worker, RN to check vitals and pain/agitation meds.
If you want her to have 24/7 care, you either need to hire in-home health or admit her to a Skilled Nursing Facility.
It can be wonderful to have access to a nurse (and perhaps a doctor) who makes home visits but you shouldn't underestimate the amount of hard physical work there is in caring for someone who is completely unable to care for themselves, I advise you to try to find care that can give you access to a hospice facility if necessary.
He had his last family dinner on July 4. My mom and sister found him delirious and on the floor July 25, after which he went on hospice. They use the same three meds for agitation, that is morphine, Ativan and Haldol/seroquel. He was otherwise untreated until his death Aug 4.
I spoke with a Social Worker at Moffitt Cancer Center and got some good information.
My mom needs Palliative Care not Hospice Care. Palliative Care is care and support for patients who are still receiving curative treatment for illness. Hospice Care is for patients who are no longer receiving curative treatments for illness. My mother is still receiving treatments for her illnesses. Medicare will cover both of these services. She is also receiving Home Healthcare which is covered by Medicare as well. Home Healthcare and Palliative Care together are just the help I was looking for.
Home Healthcare is not the same as Home Care although they sound very similar. Home Care is not covered by Insurance or Medicare unless you have a special plan that specifies this type of coverage. Home Care is usually paid out of pocket but is more extensive care.
In my state, many of the hospice services also offer palliative care. You will have to call the palliative care places and ask what services they offer. What services they do offer will vary from company to company. Nothing they offer at this point is helpful for my son. I called several companies hoping one would have a counselor/therapist on staff, everyone we called used clergy. They tried to avoid the question by saying they would need to evaluate my son to see if he needed a therapist.
My sister tried to get my Mom on palliative care when Mom wanted hospice. The bed palliative care brought out was terrible, more of a child's bunk bed, not a real hospital type bed. Mom needed the hospital bed.
From the info in your original post I (and I think most of us) assumed you were no longer seeking curative treatment BartleyLove, but since you are I understand that palliative care is appropriate. I'm glad you found a helpful social worker.
Why are you choosing palliative care and not hospice care? The treatments have made it so she can no longer stand and her condition is terminal. Why would she continue with curative treatments that are making her worse rather than accept that she is terminal and choose hospice care instead? Palliative care based on your description of it below sounds like your mother is willingly torturing herself to try and cure something that is not curable.
As to your needing help you may have to have her admitted to a facility because home hospice and/or palliative care at home means you will be doing the lions share of caring for your mother.
I only need help, as I mentioned before that is all I am looking for and thankfully I've found it.
whatever company you use will come do an evaluation and likely place he on Hospice. She will be given comfort care, if she is on Medicare all the cost will be covered.
In my state, many of the hospice services also offer palliative care. You will have to call the palliative care places and ask what services they offer. What services they do offer will vary from company to company. Nothing they offer at this point is helpful for my son. I called several companies hoping one would have a counselor/therapist on staff, everyone we called used clergy. They tried to avoid the question by saying they would need to evaluate my son to see if he needed a therapist.
My sister tried to get my Mom on palliative care when Mom wanted hospice. The bed palliative care brought out was terrible, more of a child's bunk bed, not a real hospital type bed. Mom needed the hospital bed.
There are people in stage 4 on the cancer forums that have received over 100 chemotherapy infusions and are still going.
I appreciate you sharing your experiences with me. Reading this helps so much. Thank you <3
Don't forget to ask about PT to improve mom's mobility. If walking is no longer possible, wheelchairs are a good safe option.
Thank you <3