Do you know about palliative care?

[Pagesofwords]

I have read some things about palliative care and think it could help my sister who has PSP. Have any of you used palliative care for your loved one with PSP? And, if so, what would you say about it? As I understand it, it is a fairly new medical approach in that palliative care focuses on relieving pain and improving the quality of life for a person with a serious illness and the person's family. It is different from hospice because that is for end of life. In palliative care, the patient still has hope of treatment and/or cure. Thanks for your insights.

[PSPwife]

Hello. When I noticed a prominent decline in my husband I asked about hospice (my father is on hospice and they have been a lot of help). His doctor said it was too soon for hospice so she referred us to palliative care. They arranged for a wheelchair and physical therapy. They also check with us periodically to make sure we are both OK and if we need anything. For us it has been a transitional step between "normal" and hospice. I hope this helps. It basically puts more people in your corner to help.

[Pagesofwords in reply to PSPwife]

Thanks, PSPwife.

[Satt2015]

My dad is a patient of our local hospice and under palliative care x

I've just found this on the NHS website

What is palliative care?

End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person.

Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition.

[abirke in reply to Satt2015]

VERY good reply. As I reread my post I realize I only talked about my experience not about her question...So thank you Satt for a well written definition

AVB

[Pagesofwords in reply to Satt2015]

Thanks for your post & info, Satt2015.

[abirke]

The first true form of palliative care for my husband was me quitting my Job to stay home and make his life as comfortable and healthy as I could....It is I who arranges for all medical needs from Dr. appt's to medicines.....our medical teams round here do not get together to talk about their patients.....unless, I believe, they are in some form of hospital. I did sign a form allowing dr.s to see all of Bruce's medical experiences with other dr's. But I believe that palliative care is essential for any beneficial quality of life to happen...even if there is no real team....

Good luck creating palliative care team for your sister. Most of all she will need you and her family to see to her health and safety.

Welcome to this site

AVB

[Pagesofwords in reply to abirke]

Thank you, abirke.

[easterncedar]

Palliative care by definition is meant to sooth, but is not directed to curative treatments. In the US, at least where I am, hospice is only available when a doctor has set a definite term for the patient's expected survival of no more than 6 weeks. A relative of mine was refused hospice while he was receiving dialysis, as that was treatment that would extend his life. Palliative care may treat symptoms, but does not treat the underlying disease, and is not reserved for people in imminent danger of dying.

[Pagesofwords in reply to easterncedar]

Thanks, easterncedar. I was just thinking this is something I can ask about at my next local caregiver support group meeting. One of the facilitators is a hospice counselor.

[alibid]

Where I live in Shropshire, England, palliative care is organised through the hospice. I've had 2 friends who benefited from it recently, and they would both have said to get in with your hospice as soon as possible as they were massively supportive and provided a much better environment to the hospital when things were going wrong, e.g. With pneumonia and pain management.

It can be scary going to the hospice at first as we associate it with somewhere to go to die. But they are a great place full of experienced and understanding people. I went back with my friend's Mum recently (my friend has died now from PSP) as his Mum was so grateful for all their support and her son had fun going there too! He went for day care and often had a massage and a glass os sherry. I think we could all benefit from a bit of that!

But they really understand medication and can sometimes be more responsive than going through the regular system of referrals in the UK.

I don't know many details of palliative care, but I know it helps and the sooner the better.

Good luck, and let us know how you get on.

Alison

[Satt2015 in reply to alibid]

Fantastic reply Alison! We couldn't manage without the hospices intervention they are the most amazing people! X

[Pagesofwords in reply to alibid]

Thanks, Alison, for writing back.

[Tippyleaf]

Palliative and hospice care varies hugely my country and area. We have been incredibly fortunate to have excellent local services which have been really beneficial. The palliative care consultant reviews my hubby every 6 months and oiffers practical and emotional support e.g referred to Hospice counsellor, speech and occupational therapy. My hubby attends the hospice day care centre while I am at work, this has given him back so much independence he does art and music therapy, which brings a much needed calmness to our home!!

It is worth exploring what is on offer locally I would stress hospice and palliative care is about living the best life yiu can not just about end of life care.

xxxx

[Pagesofwords in reply to Tippyleaf]

Thanks, Tippyleaf. In some ways everybody needs palliative care--to live the best life you can holistically.

[blackhill]

Agree....if you can find a palliative care team in your area, you should. I am in the US and read in a neuro magazine that anyone with a chronic, terminal illness should be referred on diagnosis. Unfortunately, my calls to teams in my area (which were attached to hospitals) did not result in a resource. They all appeared to be connected to hospital stays and one was targeted to cancer patients. But the description of the team as above from Satt2015 and from National Hospice and Palliative Care Assoc is right on to what is needed. Hopeful that since this is a new concept, we will see improved services.....as I think a multi disciplinary team that can help lead through the stages and needs of this illness would be very valuable.

[Pagesofwords in reply to blackhill]

Thanks for sharing your experience, blackhill.

[jillannf6]

i agree

lol jill

xxx

[Finoni]

It seems as though you have a good grasp of what it is all about. As others have said, it depends on where you live. We are in the northeast US with an excellent local hospital. Palliative Care is a medical specialty and we have a doctor assigned to us. She is fantastic. Very quiet and gentle, but gets right to the heart of what my husband is and is not willing to tolerate as the disease progresses. Everything is written down, but can be changed at any time. She can be an advocate for him if needed, and also takes the whole family into consideration. He has a lot of pain for various reasons, and she was very creative about coming up with ideas to alleviate his pain.

[enzo501]

my only experience w/ palliative care is with my wife and Kaiser our provider... wife has had PSP for 5 or so yrs ..Our neurologist thought they could make recommendations that might help our situation . The Kaiser Permanente people dealing with this particular disease which they admit to knowing zero about ...like most of us who entered this arena...were the most full of BS preachers I have ever seen in a theologically oriented faith based medical department ...they told us to hold hands and thank god for everyday . To take time to enjoy each other and know that tomorrow would get better... I obviously am not short on using my ability to convey my reactions when given an opening. In short I told him that 3 neeurologists, on their staff along with thousands of pages of reading ..ie trial studies, journals of people who went down this path ,and general info provided by websites dealing with this disease had NOTHING positive to say about a better tomorrow .In my opinion for my wife ...there will be NO better tomorrow only the ability to let go and be at rest and in no fear and pain .NO one should give opinions in the Medical field until they know at least what most of us are living (especially the true victims of this disease ).Our son 39 was at the meeting with us and had to leave because he was so upset with their naivety pertaining to PSP. enough said for today....jeff

[Pagesofwords in reply to enzo501]

Wow, what a bad experience. Sorry this happened to your family, Jeff. Since they knew zero about PSP, they should have gotten information from their own MDs before they talked with you--or at least asked you about it.

[cabbagecottage]

The Parkinsons nurse and go orranged our palliative care