Connect
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
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
Ashby,
My late husband was referred to a Palliative Care Specialist. He had Parkinson's Disease along with age and was referred to a Palliative Care specialist. She offered much to him/us. The husband had several more minor health issues, which complicated his life and sense of well-being. The PC specialist worked more comprehensively with him.
-
Like -
Helpful -
Hug
2 ReactionsPlease don't apologize for talking about your medical issues. Personally I am grateful to hear about what others are going through and I am always thankful for people's honesty and willingness to share.
I would encourage you to reach out to your local palliative care program to see about sitting down and asking your questions.
I wish you well and thank you for sharing your story.
-
Like -
Helpful -
Hug
3 ReactionsI, too, encourage you to seek a Palliative Care Team. The comprehensive treatments and methods focus on your challenges, needs, and quality of life to accomplish your goals. Husbands or spouses journeying, caring, and supporting their spouse with cancer or life-threatening diseases would also find help to understand, and support for coping, as cancer and life-threatening diseases affect both patient and spouse. It is not a cure. For my late husband and me, Palliative Care gave us the gift of time, pain symptom management, and palliative chemotherapy to keep cancer at bay, and all the support to help him accomplish his spoken goals. Was it easy, not always. Joy collided with agony, but our time together was priceless. I hope this is an encouragement to you and others facing difficult health issues.
-
Like -
Helpful -
Hug
9 ReactionsSo well said, @carlaz! This captures palliative care to a tee: "Palliative Care gave us the gift of time, pain symptom management, and palliative chemotherapy to keep cancer at bay, and all the support to help him accomplish his spoken goals. Was it easy, not always. Joy collided with agony, but our time together was priceless."
For many people, the phrase 'palliative care' is frightening. Your words help put the emphasis on "care". Thank you.
-
Like -
Helpful -
Hug
1 ReactionDecided to delete but can't.
I felt hopeful to get help medicare will pay for but found out palliative care will still only pay for a bath and remove my only supports from my life. Sounds like you have to have a palliative care dr and at home they give you emotional support. Medicare won't pay for two.
Anyway. I was hopeful you had an answer. If I had Medicaid, I could hsve the world for help. I have medicare/medigap (for which I am grateful) but if I'm not willing to get naked for a bath within minutes of anyone they send, even a 20 yo guy, I can't have anything. I winder if someone said it that way to congress they would understand better what elder care means. But respect older people right.
Aging in place doesn't exist unless you have money to pay for everything. Otherwise, it means ask your kids to help.
Very discouraging. I'm 69. Disabled my whole life but recently fell and need help. Nothing available insurance will cover.
-
Like -
Helpful -
Hug
2 ReactionsIt saddens me to think that whether it be aging, disabled or the need for palliative care that money and what you can afford comes before caring for the person and their needs and the families. Something needs to change.
-
Like -
Helpful -
Hug
1 Reaction