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.

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

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…..

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 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 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!

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.

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..........

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.

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!?

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.