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Brenda
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371 Posts
Discussion Starter · #1 ·
Hi everyone,
It's been a while since I've posted here. I hope someone might be able to share some information. I'm having some testing done by an oncologist, and they are requiring me to go off all meds for about 6 weeks. I have already been off some of the meds for about 8 weeks but I've continued the steroids. Anyhow I am of course flaring and in a lot of pain so my rheumatologist has decided to send me to a "palliative care clinic". Now when he said this I got really frightened because I thought palliative care was hospice. I looked it up and discovered that no it isn't. I was just wondering if any of you have gone to palliative care and what my expectations should be? Information is much appreciated.
Brenda
 

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Administrator
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10,193 Posts
Hi Brenda,

When my mom was first diagnosed with Parkinson's she was put on Palliative Care. In the beginning she lived at home. Eventually getting up and down was too difficult and she needed extra assistance so we moved her into assisted care. She continued on with her regular doctor but had access to mental health physicians, the hospital chaplain and support groups run by the hospital. Mom did go to one of the support groups but didn't use any of the other services. Everything was done at her normal clinic during office hours.

Her doctor's focus was on comfort. Any pain was taken care of quickly. The medication was regularly checked to keep the tremors at a minimum. Healthy snacks in the morning and evening were added to her diet to help with the weight loss. Otherwise we didn't see any change.

Hospice is run differently. Mom had their doctor's, nurses and an aide came in twice a week to help with skin care and give her massages.. She didn't go to them for care they came to her as often as necessary. It could be in your home with family assisting or in a care center with their nurses and aides doing the day to day assistance. A social worker and chaplain made weekly visits. Both of hers were great they were more like friends visiting. Anything amiss they would report to their nurses and care was administered quickly. Care was available 24/7 not just by appointment during office hours.

In both approaches no extreme procedures were to be done such as brain surgery to help the tremors. She wasn't entered in any drug trials or live style trials. Mom was just to be made as comfortable as possible. Only essential medications such as for her heart were kept.

You need to ask about the approaches for both in your area as they can vary.

Take care,
Lazylegs
 

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Brenda
Joined
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371 Posts
Discussion Starter · #3 ·
Thank you for the information. It feels like hope is overwith and it's just time to be comfortable, which makes me uncomfortable if you know what I mean. But I do look forward to some relief.
Brenda
Hi Brenda,

When my mom was first diagnosed with Parkinson's she was put on Palliative Care. In the beginning she lived at home. Eventually getting up and down was too difficult and she needed extra assistance so we moved her into assisted care. She continued on with her regular doctor but had access to mental health physicians, the hospital chaplain and support groups run by the hospital. Mom did go to one of the support groups but didn't use any of the other services. Everything was done at her normal clinic during office hours.

Her doctor's focus was on comfort. Any pain was taken care of quickly. The medication was regularly checked to keep the tremors at a minimum. Healthy snacks in the morning and evening were added to her diet to help with the weight loss. Otherwise we didn't see any change.

Hospice is run differently. Mom had their doctor's, nurses and an aide came in twice a week to help with skin care and give her massages.. She didn't go to them for care they came to her as often as necessary. It could be in your home with family assisting or in a care center with their nurses and aides doing the day to day assistance. A social worker and chaplain made weekly visits. Both of hers were great they were more like friends visiting. Anything amiss they would report to their nurses and care was administered quickly. Care was available 24/7 not just by appointment during office hours.

In both approaches no extreme procedures were to be done such as brain surgery to help the tremors. She wasn't entered in any drug trials or live style trials. Mom was just to be made as comfortable as possible. Only essential medications such as for her heart were kept.

You need to ask about the approaches for both in your area as they can vary.

Take care,
Lazylegs
 

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Administrator
Joined
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10,193 Posts
Palliative Care has no time limit so I wouldn't give up hope. Look at how quickly these MRNA vaccines came out.
More eyes are on Lupus than in the past because of long haul Covid which many doctors think is like an autoimmune response so research in that area may unlock more keys to helping us.

Take care,
Lazylegs
 
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