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Does anyone have experience with Palliative Care?
Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)Comment receiving replies
Apparently I don’t understand what palliative care is. I always thought it was pretty much taking care of your loved ones at home. My dad was paralyzed from the neck down for 17 years and my mom and I took care of him during that time. In the end he developed cancer which is what he died from. We continued to take care of him during that time as well, both at home and in the hospital. He never had hospice services. Then I took care of my mother who ended up being bedridden and died from heart disease. She had hospice at the end.
Thank you,
Jake
Replies to "Apparently I don’t understand what palliative care is. I always thought it was pretty much taking..."
@jakedduck1- Hi. We haven't spoken in a while. I hope that you are well. Essentially you were doing the same thing at home, coordinating things, keeping your folks comfortable and out of pain, scheduling appointments, and getting meds. It's a big job. I did it for my mom too. In the hospital it's a patient's team who does it all, keeping in mind what the patient wants. You do understand Palliative care, you did it, but at home. I'm sure that you followed all the doctor's recommendations and medicines to keep your folks comfortable. I'm also sure that you did it with tender and loving care.
I agree with Becky, it's not the actual hands-on care, but the hospital/ doctor program that is set upbaround what a person needs. Does this make sense?
@jakedduck1 Your posts as you have related the care your and your mom gave to your dad, and later the care you gave to your mom, certainly show the loving and challenging relationship. Remember, hospice care did not end when your mother passed. It seems all hospice groups have family services for use after a patient no longer needs them. I recall the local group where I lived extended services to me after my dad passed, even though we had used a hospice 400 miles away. It was comforting to know they supported all phases.
Ginger
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@jakedduck1 Leonard, you can think of palliative care as an organization that provides coordination of care. It is not physical care. For me, they could help keep tabs on all my medications(lots!) and doctor visits. I have 3 visits this week for infusions and because of side effects, I have to change my diet. I think I’m young enough and smart enough to do all this for myself, but it’s a real challenge. Big challenge! They also manage side effects from diseases and pain. The goal of Palliative care is to help someone achieve the best quality of life possible in their circumstance.
Leonard, you provided loving care to your parents and may not have needed Palliative Care to coordinate for you. We all know the wonderful job you did and we thank you. Becky