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.

mindyi63 | @mindyi63 | May 15 7:51am

Sorry you are dealing with all of this
I too have a huge laundry list of chronic debilitating illnesses
I would like yo throw something out there…I have severe stenosis and arthritis in my spine ( neck down )
All my problems stem from that
Like you I have specialist but I did go Palliative Care
He will help oversee my care but he only medicates gor pain for cancer patients
I have another pain dr too
Go for consult if you can find one
Try Mayo or go South to Gainesville

smc55 | @smc55 | May 31 7:56pm

In reply to @windyshores "@philipsnowdon I wish I could rate that response 1,000%. Glad you still have meds. My mother..." + (show)

I am in total agreement with your assessment of the govt’s crackdown on the use of drugs & opioids by patients who really need them. I also don’t appreciate Big Pharma chiming in on a doctor’s assessment of what will work best for the patient. Then, Big Pharma turns around denying use of a prescribed medication when our physicians best know their patients & their needs.
I also believe that the cost of research done by Big Pharma is something that should be shared internationally & not causing the outrageous prices that Americans are charged due in large part to research.
I’m so sorry for your suffering for so many years.
Prayers, love & peace to you & your wife, Sir.🙏💕🌻

celia16 | @celia16 | Jul 4 9:44pm

Is there any reason the primary care provider can’t provide palliative care?

Miriam, Volunteer Mentor | @mir123 | Jul 6 9:30pm

In reply to @celia16 "Is there any reason the primary care provider can’t provide palliative care?" + (show)

I think palliative care is a specialty, particularly in terms of pain control and other kinds of support. Can you say a bit more about why you are asking? Have you or someone else been referred to palliative care recently?

celia16 | @celia16 | Jul 7 2:20am

In reply to @mir123 "I think palliative care is a specialty, particularly in terms of pain control and other kinds..." + (show)

I’m inquiring this due to my Dad. He’s 87 and has multiple conditions that are now significantly effecting his daily life. He’s at home now, but…not sure how long that will be feasible. His mobility is very limited. He has cardiomyopathy, which has resulted in CHF, an aortic aneurysm, multiple PVCs, CKD, hypothyroidism, Alz, and more. He says he is exhausted. We wish to explore the options to keep him comfortable. I was hoping his existing primary could do that, since he’s seen him for many years and their office is open 7 days a week.

Miriam, Volunteer Mentor | @mir123 | Jul 7 10:07am

In reply to @celia16 "I’m inquiring this due to my Dad. He’s 87 and has multiple conditions that are now..." + (show)

Thanks for explaining--and I am sorry your Dad is going through this rough time. You might talk to the PCP to discuss options. Palliative Care might include visiting nurses and possibly other helpful resources, but I think it differs somewhat from place to place. Consulting with the PCP could help set up a team approach for your father. Wishing you all the best with this.

Funcountess | @funcountess | Jul 7 11:24am

Finding a good geriatric doctor will help. They can put a person in touch with palliative teams, and at least know how to help a person. It helps if you live in a big city, or near one.

celia16 | @celia16 | Jul 7 11:33am

In reply to @funcountess "Finding a good geriatric doctor will help. They can put a person in touch with palliative..." + (show)

I think his primary is one. I know he and his partners regularly treat patients on location at our local nursing homes. And, he’s talked to us regularly about what to expect with the progressive of the dementia and heart disease. I will ask what he recommends. He knows my dad’s condition so well.

rashida | @rashida | Jul 7 2:40pm

In reply to @cindylb "Hello @ashby1947 My husband has supportive/palliative care. He didn't always and our experience with supportive care..." + (show)

@cindylb

Hello @ashby1947 My husband has supportive/palliative care. He didn't always and our experience with supportive care is absolutely wonderful! My husband has Stage IV Lung cancer and has other issues as well (Tachycardia, dizziness issues, tremor, pain issues, etc). I have had cancer and recently lymphedema from my cancer surgery and hospitalization with sepsis. I am my husbands sole caregiver as well as taking care of my Mom and Mother In Law, who don't live with us but have multiple needs and medical issues as well that my husband and I take care of for them. At one point my husband's cancer was called, 'cancer of unknown primary'....the doctors didn't know the actual type of cancer (we now have a diagnosis guess at least). My husband takes about 12 different drugs, is having chemo and immunotherapy and radiation treatments. I'm still working. Because there were so many doctors and concerns it was overwhelming for me to manage all the drugs, know which doctors to call for what, etc. We were running from appointment to appointment and I was trying to manage it all and make decisions about what might be causing his symptoms. Although I think I do a pretty great job (ha ha) one doctor prescribed an increase in dose of one of my husbands meds which caused him to become highly erratic and I 'lost' it with our oncologist (who is a great doctor). I was expected to manage a complicated situation and although I spent a lot of time on the phone with docs and reading and researching - the oncologist got us supportive care and it's been a real blessing. Now I have one doctor to call about concerns and he makes the decision as to what we should do. He coordinates care with all the other disciplines and recently got my husband physical therapy for his dizziness....something I would have NO IDEA even existed. All blood work is done in our home, a nurse visits once a week and is available by phone 24/7, we have social service support and a chaplain that visit and try to help me as a caregiver to manage the workload with this. My husband has Medicare and a supplement with our insurance carrier and the costs are finally manageable for his care as well. I think when I 'snapped' it made them realize how complicated my husbands care had become and how we couldn't manage it without more support. The referral was made by our oncology team in this case. The care has to be reauthorized every six months in our case. We're on our second six months. My husband's cancer 'qualifies' him as terminal and not curable but we're still hopeful that he will have much more time than we thought 6 months ago....more like a years perhaps. If your situation is becoming too overwhelming I would certainly request supportive care because I believe it's extended my husband's life and kept me from losing my mind and health. Good luck and Hugs.............

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@cindylb please tell me you live in Ontario, Canada!?

rashida | @rashida | Jul 7 3:12pm

In reply to @ess77 "I'm with you 100%! I bought this place in the 80's to be close to my..." + (show)

@ess77 what a brilliant idea … turning the third bedroom into a “kitchenette/pantry”! Wish I had read your post in 2020 - I would have done just that! We had to sell our house - which had thirteen steps up to the two bedrooms, and thirteen steps down to the basement level to do laundry - because we couldn’t manage the steps.

Our new location does have its benefits … but I miss the old neighbourhood where we loved for about 33 years.

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