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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.

miriam57 | @miriam57 | Dec 13, 2020

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

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ess77 - Elizabeth | @ess77 | Dec 13, 2020

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

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ess77 - Elizabeth | @ess77 | Dec 13, 2020
In reply to @criss "As a side note, I wonder why condos always seem to be set up with the..." + (show)
@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.

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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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1 reply
ashby1947 | @ashby1947 | Dec 13, 2020
In reply to @antillon8084 "Too bad I just saw this in Dec 2020 but Palliative care is definitely for you...." + (show)
@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...

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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

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1 reply
ashby1947 | @ashby1947 | Dec 13, 2020
In reply to @ess77 "Hello, Sue. I read your message and as I'm writing, I have a smile on my..." + (show)
@ess77

Hello, Sue. I read your message and as I'm writing, I have a smile on my face, just took a really deep breath, shoulders went down a
'foot'!, neck and head still hurt but will probably hurt less as I go along. It 5 PM. I came downstairs an hour ago, put a Publix Aprons ready to heat chicken breast stufffed w/spinach and gouda cheese. I love these prepared meals from them. I can eat real, 'home-made' food w/o preservatives and soo many additives...all I do it stick it in it's pan in my new covection oven, set and wait. What a wonderful way to 'cook'. Either that or Publix deli stuff and/or frozen Healthy Choice or whatever...with no preservatives. I eat yogurt and fruit w/granola parfaits for breakfast, and have an Atkins smoothie. This is pretty much what I eat these days. The yogurt and smoothies help my tummy and relux. And, give me good calcium. I haven't had milk products other than that due to intolerance. The beginning of this horrid year, I set up a little special area for myself in my 'kitty' room, 3rd bedroom w/kitty litter. I have a small fridge for diet coke, bottled water, electrolyte water, Atkins smoothies, yogurt, white grape juice, iced tea I get from Publix in quart bottles I can lift....arthritis in hands, wrist, fingers, everywhere so i can't lift anything as heavy as a gallon of water. I've figured out lots of ways to accomplish what I need to do, but I do get so frustrated and angry that I can't do what I want, when and how I want. I moved fast and with real purpose all my life. What a change!!! BTW: I was in retirement administration for 15+ years, until I just couldn't deal with the emotional strains of 24/7 responsibility for so many lives of the older residents and their families. So, I left, had emergency abdominal surgery for a large benign tumor, opened a shop in a residential area, selling home decor, stationery, greeting cards, gifts of all sorts, collectibles and whatever else I thought fun. I loved it, had a ball and almost killed myself with the work. But, that's what I did....throughout my life....Well, you asked about the double vision. I was diagnosed with Myasthenia Gravis and that was considered the cause. It wasn't/isn't. I don't have it...after 8+ years of the diagnosis. Why the dilopia? Don't know. So far, no one has given me a reason. Since I had eyelid surgery at Mayo to tighten the lids so I can again open my eyes, all the way, I do see much better and the surgery was totally successful. I still have dilopia, but not as often. Before, it was always and then most of the time. Now, for the last year, it comes and goes on a whim. No idea what brings it on, unless it's related to being tired, or ill or mechanical in some way. Now, my sight is getting worse at times. Blurred, writing or sight just off kilter if that makes sense? Not quite double, but off....I can't see distance clearly any more, can't see street signs. I often can't read with my reading glasses, or read on the computer. Now, I see ok with reading glasses, but after a bit on the computer, it'll get blurred or unclear. Also, my dry eyes get really seriouly bad at times. That interferes with sight as well. I use Refresh as needed, Xiidra drops 2X daily. They help some. So, since the eyes are worsening, I'm seeing Mayo neuro opthomologist next week. This coming week I see cardiology for additional work-ups...bldwk, ekg, echo, meeting w/doc. I'm wearing a heart moniter for a month, since I was in Mayo hospital a couple weeks ago for thyroid mess and probably heart as well. Thyroid is better controlled now with less synthroid, I was over medicated.Amazing how many symptoms are now gone or controlled by just that adjustment! Then, the following week I see the neuro opthomologist. I do hope he'll find an answer of some kind. It'd be lovely to get some real relief from the dry eye as it affects my life much of the time. If he can determine the cause for dilopia, wouldn't that be lovely. I think 'coke bottle' glasses are used for that and help us focus better, see only one of anything. Oh, I do see 2 at all levels. Watching tv is fun! I have 2 screens, 2 of everything in blocks, almost side by side. That's the way I see the world when it's bad. Now, I just looked at this message!!! I can't write this long!!! Sorry, I got started and guess with you I must remind myself to stop. It does feel wonderful to share these personal, real parts of my life with someone I'm sure really understands what I'm saying. Understands what I'm feeling. Another deep breath....thanks for being on this Mayo site, Sue. Thanks for sharing. You are a gift to me. I hope I can return the favor. Blessings in this journey. Elizabeth

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Hi Elizabeth - I agree with the frustration that Mayo PCP doesn't accept Medicare pts. Oh well. My PCP was trained at Mayo, so that is good. I see my PCP on Wednesday and have made a list of my medical issues. I plan to ask for a referral to Mayo Pall Care. Publix is great for prepared meals. Unfortunately, I cannot eat fruit, veggies, or fiber (not to mention fun things like nuts), so I am limited in my diet. Some day I'm going to chuck it all and have a big salad. I had many digestive issues in 2012-13, and while they never figured out what was wrong with me, that was the determination. My PCP at the time, in Michigan, also said to take Miralax every day. I'm down to 1//2 the regular dose, but whatever - it works. I was hospitalized twice with an obstructed bowel. Talk about the pain scale - those little episodes tipped in at 11 or 12! Anyway, I've been living on Publix chicken soups for the past several weeks. I don't cook much....

I do have prism glasses to correct my diplopia. I remember coke bottle glasses, but these are in regular frames and are not an issue. They work for seeing the computer and what little reading I do. I use Refresh Mega 3 and Retaine MGD 8 - 10 times/day. I also use an eye mask that I heat up almost daily. It's supposed to help the meibomian glands. I think my dry eye syndrome has progressed to the point where not much helps; however, if feels good to lie down with it on.

You're in Jacksonville? We moved to Mandarin from Michigan in 2015. We like it here very much, and I love the warmth. Walking on snow and ice was just too scary to me; although, at the time, I didn't have all my current issues. Yes Elizabeth, I am very much enjoying getting to know you and appreciate being able to share all the chaos in my mind. Dealing with all these issues is sometimes overwhelming, and talking with someone who understands, it great! I hope you're having a good day. Sue

REPLY
ess77 - Elizabeth | @ess77 | Dec 13, 2020
In reply to @criss "As a side note, I wonder why condos always seem to be set up with the..." + (show)
@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

I'm with you 100%! I bought this place in the 80's to be close to my mother who was not well. I needed tp be near her, so I bought a unit at the front of the property, a couple streets away but still close. We walked together, my dog an I walked to her place every morning for 'breakfast' and a visit, to take care of her home for her, etc. I planned on moving into a one story condo, but never was able to. make the move. Mom was ill for 12 years, I was ill, my son became disabled and so on. So,I'm still here. I'm making it work as long as possible as It's paid for, great location, just not on the water like I planned!!!! After it's reno'd, with the little 'kitchen' set up in the 3rd bedroom, I'll be fine to stay until I can't! Wish me the best as I continue to struggle to get this all done! Blessings Elizabeth

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1 reply
trishanna | @trishanna | Dec 13, 2020
In reply to @ess77 "trishanna, Publix is my grocery store. I live in Florida where Publix is a large chain...." + (show)
@ess77

trishanna, Publix is my grocery store. I live in Florida where Publix is a large chain. They have an Aprons program for recipes, cooking classes and have prepared meals, healthy and with no preservatives, etc. A bit expensive, but it's pretty much what I eat, so I splurge. Hope you find the same thing in your area.....Elizabeth

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@ess77. Sounds like just what I need. Unfortunately, not here in Central Illinois. Wish politicians would quit saying that all we high risk folks need to do to avoid COVID19 is stay home and have our groceries delivered. Bit more complicated than that for some of us. Thanks for sharing.

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antillon8084 | @antillon8084 | Dec 13, 2020

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...

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2 replies
ashby1947 | @ashby1947 | Dec 13, 2020

Hi Merry - Thank you for sharing your thoughts and experiences. What resonated with me most was the relief you felt at not having to shoulder everything yourself. I am a strong woman, but I need help beyond working individually with my speciality physicians. I'll keep you posted. I used to live in Boston - much to enjoy there! Sue

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Merry, Alumni Mentor | @merpreb | Dec 13, 2020

Good morning @ashby1947. It's nice to meet you. I am a Connect mentor for lung cancer and lung health groups. I am also a 23-year lung cancer survivor and am receiving palliative care. Palliative care, for me, started before I knew that it had. It's actually a group effort when you have a severe illness or more. It's a wonderful effort to help keep you comfortable, as pain-free as possible. It deals with any stomach ailments, depression, needed social services, and helping to make the quality of life decisions that you will be happiest with while you're ill. The priorities that you discuss with them will be the focus, of course.

This is not hospice. It is a coordination of your team to help give you the best quality of life that you want, even in planning the future!

For me, it is all of these, minus stomach upsets, pain, and social services. It is also keeping an eye out on the amount of lung tissue I have so that if I need to have radiation that will be a factor. I have a surgeon, radiologist, and oncologist as my main doctors. I also have others who are part of my team who look after other things. WHent here is a problem, they all work together and it's my oncologist and surgeon who are my main contacts.

When I realized what this was I felt such a feeling of relief! I didn't have to shoulder everything. When I asked my oncologist how to go about donating my lungs to science she said that we would discuss this when the time comes...but that is way off in the future! Phew!

I hope that this answered at least part of your question. Please feel free to ask if you have more. I live in New England so I use Mass General as we do not have Mayo hospitals here.

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