Does anyone have experience with Palliative Care?
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.
@ashby1947 Here is some information on geriatric nurse practitioners that you might find helpful.
Let us know if you learn something!
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
Sue, I didn't finish a thought about my 3rd bedroom. I set up a little fridge, coffee maker and coffee related stuff, microwave. Just so I can have those things available upstairs, when I can't for whatever reason go downstairs. i.e. after hospital, after fall, just don't feel well, fatigued or whatever. I have a recliner in my bedroom, TV, set up for comfort as a sitting room as well as bedroom. Since I live alone, this set-up works very well for me. I need help from housekeeper or someone to get things upstairs for the fridge, but I'm working it out. Hopefully, this will keep me in this condo for a good bit longer, since I have 14 steps to get to the bedrooms or down to the kitchen. Blessings…Elizabeth
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.
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.
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
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…
@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.
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
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