Does anyone have experience with Palliative Care?

Posted by ashby1947 @ashby1947, Dec 11, 2020

Hello Everybody - If you have had experience with Palliative Care, I would truly appreciate hearing about it. What were your medical issues? What did your Care Team do? Did it work for you? I'm a 73 y.o. woman with multiply medical problems, most of which are severe: uncontrolled BP (on many medications which create their own problems); dizziness and lightheadedness; Hx of atrial fibrillation and supraventicular tachyicardia; stomach pain daily 8 or 9 on scale (this is recent and I'm not sure tx for heart burn is correct) and all the accompanying issues of no appetite, weight loss, constant nausea; diplopia which affects balance and self-confidence; lumbar stenosis; dry eye syndrome; and other. Sorry, don't mean to be tedious. The reason I mention all these is that dealing with all of them, every day, is making me exhausted and depleted physically, mentally, emotionally, and spiritually. My husband is great; however, this obviously affects him. I am barely able to accomplish activities of daily living, and recently I have asked him to drive me because I don't feel confident on my own.

I know that hospice care is for those with 6 mos or fewer to live. What I've read about Palliative Care mostly talks about care for people with one significant issue - cancer, heart disease, kidney failure. I wonder if I would even qualify since I have multiply problems. I have very good physicians and medical care here in Jacksonville. But they are each specialists. You know how it goes - no one is dealing with how they all interact and the compound effect on me. I have a long session scheduled with my PCP in a few days. He seems to deal only with the presenting problem.

Any thoughts or experiences you have had would be welcome! Hope this is a good day, Sue

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@nmalsb4316

I have not yet been the patient but I have been a family member and it was such a relief to both my Dad and us. The medical staff, which included a chaplain, were there to advise on both medical plans, emotional needs, comfort and spiritual needs. I, as a United Methodist minister, have also been with families and patients as they have been in palliative care. They all, patients and all family members, seems to be very satisfied. I have also been a chaplain working in a hospital setting that have served in the family's needs. I would highly recommend palliative care when that need arises.

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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

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@jakedduck1

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

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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

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@becsbuddy

@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

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@becsbuddy
First of all thank you very much for the kind words.
I guess I was providing palliative care and I didn’t realize it.

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@ess77

Since I'm in Florida, my situation is probably much different than yours. We have gobs of retirement communities, of all shapes and sizes. The living quarters are all on one floor, but some are condos. some smallish homes and you pay for individual services you choose, some appartement-type living in high rises....pretty much anything you want. I used to be in retirement administration, and determined at that time to get my name on the waiting list and not allow myself to be in this situation. BUT, life has all kinds of twists and turns and screwy moves that change best laid plans. I'm on the waiting list for a retirement community, but need to stay here for now. My son is disabled with dystonia and other issues, moved to live with me for a couple years when he was first ill, at age 35, and now has a condo across the street. We see each other daily, talk often....I'm here for him and now he's here for me at times. When he can. So you see, I've been caught in this condo pretty much. That's why I'm renovating and setting up the upstairs to make it possible for me to stay upstairs when I can't use the stairs safely. Suggestion: find the right community for you and your husband, now. Don't wait. You want to expand your possibilities, not limit them. I got caught by circumstances. Make your choices and decisions before that happens. This is one of the real frustrations in my life, loss of control. For so many years I've been controlled by circumstances....my mother, my son, my health.....now, working with Mayo, getting answers and given more control of my health, my life is mine again. What a great feeling! I'm not really in control, I know that. BUT, I have more control now than I have in years. Love it, liking life and myself much better. Blessings to you. Elizabeth

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Houses with stairs might keep people more active and in better shape. But if that gets to much look into putting in a stair climbing system or a personal elevator I understand they are not that expensive good luck dave

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@jakedduck1

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

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@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?

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I have experience with it, my father was in a hospice. I highly recommend a hospice for loved ones when God has prepared a place for them, and the time is right. The hospice we utilized was beautiful, and helped me through it. I couldn't have had my father at home, he was an alcoholic, and a mess. He was always shouting, especially at me. He had assisted living, and then straight into hospice, no SNF care.

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@Erinmfs

I have experience with it, my father was in a hospice. I highly recommend a hospice for loved ones when God has prepared a place for them, and the time is right. The hospice we utilized was beautiful, and helped me through it. I couldn't have had my father at home, he was an alcoholic, and a mess. He was always shouting, especially at me. He had assisted living, and then straight into hospice, no SNF care.

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@Erinmfs- Good morning. It's nice to talk with you. Hospice is not the same thing as palliative care, although their aim is the same, the populations are different.

Palliative care is an off-shot of Hospice but it is not for people who are dying. It is simply a program to improve the quality of life, in all aspects, of a person during a serious illness.

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-palliative-care-improving-quality-of-life-during-a-serious-illness/

Does this make sense?

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I see, I didn't mean to mis-speak, delete my false information if needed! My experience was that my father was kept comfortable in a hospice. But hospice workers told me that he could stay 6 months with medicare hospice services, and then go home. Thinking back, the hospice workers didn't use the term palliative care with me , maybe I heard that term in assisted living?

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@Erinmfs

I see, I didn't mean to mis-speak, delete my false information if needed! My experience was that my father was kept comfortable in a hospice. But hospice workers told me that he could stay 6 months with medicare hospice services, and then go home. Thinking back, the hospice workers didn't use the term palliative care with me , maybe I heard that term in assisted living?

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@Erinmfs- Nothing to worry about.

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@jakedduck1

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

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@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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