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.

cindylb | @cindylb | Jul 8 4:19pm

In reply to @rashida "@cindylb please tell me you live in Ontario, Canada!?" + (show)

Not in Ontario.....in Colorado..........

gravity3 | @gravity3 | Jul 9 5:48am

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

Your local hospice should be able to inform you about local palliative care.

rashida | @rashida | Jul 9 10:07pm

In reply to @gravity3 "Your local hospice should be able to inform you about local palliative care." + (show)

We do have hospice and palliative care here - but nothing like what you describe!

celia16 | @celia16 | Jul 10 4:14am

In reply to @gravity3 "Your local hospice should be able to inform you about local palliative care." + (show)

I wish that were true, but our local hospital really struggles. I’d be surprised if they could provide much of anything. We were there recently in ED for 8 long hours. They saw my Dad and I explained the situation. He had fallen and was suffering from eye inflammation. They said follow up with primary and cardiologist. Very understaffed. Dad nor I were offered water or food all day. They had no eye drops or ointment (sent my brother to buy some), no blankets, no pillows, no toilet paper, no one to help get my dad to car in wheelchair. A passerby helped me get Daddy in the car after I wheeled him out after discharge. Very sad situation.

rashida | @rashida | Jul 10 4:46am

In reply to @celia16 "I wish that were true, but our local hospital really struggles. I’d be surprised if they..." + (show)

@celia16 do you live in the States, or Canada?

celia16 | @celia16 | Jul 10 8:54pm

In reply to @rashida "@celia16 do you live in the States, or Canada?" + (show)

The US! I know. I choose to believe someone messed up the supplies, maintenance schedule, etc. I really hope it was just an off Sunday. Idk. I have a relative who works there…..

philipsnowdon | @philipsnowdon | Jul 11 3:41pm

Hello, I’ve been severely disabled the past 33 years from a combination of CFS, CHRONIC FATIGUE SYNDROME, FIBROMYALGIA, CM, CHIARI MALFORMATION. Diagnosed and treated for prostate Cancer 18 months ago. I started seeing a Palliative care physician about 6 months ago. He assists me with managing my overall quality of life with all of my health challenges. I find him very helpful
and recommend that you seek one out for your situation.
He can also prescribe me meds if one of my other specialists can not, especially pain meds! Palliative care specialists can provide a very important role in your health are and over all well-being.
Best wishes,
Phil

Funcountess | @funcountess | Jul 27 4:40pm

In reply to @criss "As a side note, I wonder why condos always seem to be set up with the..." + (show)

There is nothing like a one story house. Have always lived in them.neighbors are all struggling in their 2 story homes.
Some that have bedrooms and bathrooms downstairs have moved into them in their 70s.

rashida | @rashida | Jul 28 6:30am

In reply to @celia16 "The US! I know. I choose to believe someone messed up the supplies, maintenance schedule, etc...." + (show)

@celia16 the description of your experience made me wonder if you were in Canada, because the situation is no better here, despite “free” healthcare. System here is going downhill by the year!

celia16 | @celia16 | Jul 28 10:38am

In reply to @rashida "@celia16 the description of your experience made me wonder if you were in Canada, because the..." + (show)

I’ve read that a lot. Our experience in the ED that day was bizarre, imo. My dad got his Explanation of Benefits from his health insurance company and the charges JUST for his labs was over $23,000.00. Seriously. Insurance paid over $19,000.00. Daddy’s part is slightly over $200.00. No telling what the entire bill will be.