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

@antillon8084

Too bad I just saw this in Dec 2020 but Palliative care is definitely for you. You have many issues that interfere with daily living. Each specialist needs to input into request for Palliative care. Everyone needs to see the WHOLE picture…

Jump to this post

Hi – I'm told by Mayo Palliative care to get a referral from my doc. I'm seeing my PCP this week. When I have my initial consultation at PC, I assume at that time we talk about all my docs and how/ir they are involved. I'm so new to this, just taking it one day at a time. Any suggestions you have as to how best to work with PC would be greatly appreciated. Thank you, Sue

REPLY
@criss

As a side note, I wonder why condos always seem to be set up with the bedrooms on the second floor (at least ones in our area). We like the idea of owning a smaller home and not have to do the maintenance, lawn care, etc. But we are in our 70s and realize stairs may be a problem in our near future. We want our rooms all on one floor.

Jump to this post

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

REPLY

antillon8084, I'd like the same info Ashby1947 requested re PCP. tks Elizabeth

REPLY

Wow, sounds like you have figured it out! Thank you for sharing

REPLY
@ashby1947

Hi – I'm told by Mayo Palliative care to get a referral from my doc. I'm seeing my PCP this week. When I have my initial consultation at PC, I assume at that time we talk about all my docs and how/ir they are involved. I'm so new to this, just taking it one day at a time. Any suggestions you have as to how best to work with PC would be greatly appreciated. Thank you, Sue

Jump to this post

@ashby1947 and @ess77 I’m so glad that you’re taking the lead and contacting your PCP for a referral. Warning, some doctors may be reluctant to make the referral, but just emphasize that it is what you need and want.
To get ready for your meeting with Palliative Care, you want to make a list of all your doctors and what they do for you, what prescriptions they write, etc. Also, a list of all your medications and the pharmacies you use. And, then, what PC can help you with. It sounds like you want someone who can take some of the burden off of you. This is important because you need to save some of your energy for just taking care of yourself! Being sick/getting well is such a full time and exhausting job! Luckily, I’ve found that members on Connect really understand and are so helpful. I’m glad you found Connect! Good luck with your appointments and let us know what you learn. Will you do that?

REPLY
@becsbuddy

@ashby1947 and @ess77 I’m so glad that you’re taking the lead and contacting your PCP for a referral. Warning, some doctors may be reluctant to make the referral, but just emphasize that it is what you need and want.
To get ready for your meeting with Palliative Care, you want to make a list of all your doctors and what they do for you, what prescriptions they write, etc. Also, a list of all your medications and the pharmacies you use. And, then, what PC can help you with. It sounds like you want someone who can take some of the burden off of you. This is important because you need to save some of your energy for just taking care of yourself! Being sick/getting well is such a full time and exhausting job! Luckily, I’ve found that members on Connect really understand and are so helpful. I’m glad you found Connect! Good luck with your appointments and let us know what you learn. Will you do that?

Jump to this post

@becsbuddy I have just added Palliative Care to my POA, etc., but had no idea how to initiate it. Thank you so much.

REPLY
@becsbuddy

@ashby1947 and @ess77 I’m so glad that you’re taking the lead and contacting your PCP for a referral. Warning, some doctors may be reluctant to make the referral, but just emphasize that it is what you need and want.
To get ready for your meeting with Palliative Care, you want to make a list of all your doctors and what they do for you, what prescriptions they write, etc. Also, a list of all your medications and the pharmacies you use. And, then, what PC can help you with. It sounds like you want someone who can take some of the burden off of you. This is important because you need to save some of your energy for just taking care of yourself! Being sick/getting well is such a full time and exhausting job! Luckily, I’ve found that members on Connect really understand and are so helpful. I’m glad you found Connect! Good luck with your appointments and let us know what you learn. Will you do that?

Jump to this post

I'm chatting wwith the heart doc tomorrow afternoon. Then, PCP for referral. Maybe I can get referreal from cardiology at Mayo? My #1me neurologist, I have 4 or 5, has referred some as needed to other departments. If not, PCP it is. I pray for some good information and real help. I'm afraid most of the time I'm just surfing through…..need the help. Thanks for your encouragement, Becky. I'll let you know.

REPLY
@becsbuddy

@ashby1947 and @ess77 I’m so glad that you’re taking the lead and contacting your PCP for a referral. Warning, some doctors may be reluctant to make the referral, but just emphasize that it is what you need and want.
To get ready for your meeting with Palliative Care, you want to make a list of all your doctors and what they do for you, what prescriptions they write, etc. Also, a list of all your medications and the pharmacies you use. And, then, what PC can help you with. It sounds like you want someone who can take some of the burden off of you. This is important because you need to save some of your energy for just taking care of yourself! Being sick/getting well is such a full time and exhausting job! Luckily, I’ve found that members on Connect really understand and are so helpful. I’m glad you found Connect! Good luck with your appointments and let us know what you learn. Will you do that?

Jump to this post

@becsbuddy– These are really wonderful tips Becky.

@ashby1947 and @ess77– I think that there might be confusion as to what palliative care is and how it's initiated. And I'm sure that this is different for each hospital setting. Interestingly, to me, palliative care was an offshoot of hospice care as a result, in the early 1900s, of seeing people with cancer who were suffering and in great pain, but they weren't dying! As time went by doctors and nurses and nuns were looking at new ways of managing pain, not wanting hospice to be just for the dying. And as time went on changes were made in gaps for treatments for the whole being, hence, Palliative care.

Palliative care should start with your PCP and branch out from there as you build your team of doctors. They will help you or make recommendations for other specialists if need be for pain management, spiritual guidance, emotional support, and even child care. So it may not be a separate department, per see, but referrals to see others who will help care for your needs other than radiologists, surgeons, and oncologists.

Earlier this year I had a very down to earth conversation with my oncologist as a result of my own misunderstanding of what was going on with my cancer. I was very depressed and scared and I worried about everything. Jennifer, my oncologist, explained everything to me and recommended if I wanted to see a therapist or social worker. My husband asked her if this was part of what is referred to as palliative care. She said, YES!

So, what grew out of pain with cancer patients has grown into a wonderful sub-specialty which means that the whole person is being treated, not just pain. It's not so much a program like hospice that you sign up for but an offshoot of caring for the whole of you.
https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/types-palliative-care
https://www.cancernetwork.com/view/effective-palliative-care-what-involved
Palliative care is an interdisciplinary medical approach that is aimed at optimizing the quality of life.

If you feel that this is something that you lack then ask for it! Sometimes there's a whole separate department and sometimes it's just a referral to a particular doctor.

Does this make sense?

REPLY
@merpreb

@becsbuddy– These are really wonderful tips Becky.

@ashby1947 and @ess77– I think that there might be confusion as to what palliative care is and how it's initiated. And I'm sure that this is different for each hospital setting. Interestingly, to me, palliative care was an offshoot of hospice care as a result, in the early 1900s, of seeing people with cancer who were suffering and in great pain, but they weren't dying! As time went by doctors and nurses and nuns were looking at new ways of managing pain, not wanting hospice to be just for the dying. And as time went on changes were made in gaps for treatments for the whole being, hence, Palliative care.

Palliative care should start with your PCP and branch out from there as you build your team of doctors. They will help you or make recommendations for other specialists if need be for pain management, spiritual guidance, emotional support, and even child care. So it may not be a separate department, per see, but referrals to see others who will help care for your needs other than radiologists, surgeons, and oncologists.

Earlier this year I had a very down to earth conversation with my oncologist as a result of my own misunderstanding of what was going on with my cancer. I was very depressed and scared and I worried about everything. Jennifer, my oncologist, explained everything to me and recommended if I wanted to see a therapist or social worker. My husband asked her if this was part of what is referred to as palliative care. She said, YES!

So, what grew out of pain with cancer patients has grown into a wonderful sub-specialty which means that the whole person is being treated, not just pain. It's not so much a program like hospice that you sign up for but an offshoot of caring for the whole of you.
https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/types-palliative-care
https://www.cancernetwork.com/view/effective-palliative-care-what-involved
Palliative care is an interdisciplinary medical approach that is aimed at optimizing the quality of life.

If you feel that this is something that you lack then ask for it! Sometimes there's a whole separate department and sometimes it's just a referral to a particular doctor.

Does this make sense?

Jump to this post

Hi Merry – Thank you sharing your experience. I will keep in touch as I investigate Palliative Care. Cheers, Sue

REPLY

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.

REPLY
@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.

Jump to this post

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

REPLY
@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

Jump to this post

@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

REPLY
@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

Jump to this post

@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.

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

@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?

REPLY
Please login or register to post a reply.