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My mom has Corticobasal Syndrome. It is a terrible and rare brain disease that affects all motor function in the body including speech. The Dr. keeps offering palliative care but I'm not sure if we need it. I take care of my Mom 24/7. She lives in our house and is very well cared for so I am not sure why this service is being offered. What I really need is a support group for Corticobasal Syndrome so I know how to handle each step of the disease process. There is not much information out there. Thank you for your help and thoughts.

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My Mom was diagnosed with Failure to Thrive and placed on Hospice, while living in an Independent Living apartment. In her case, she continued to receive medical care & treatment with all her medical issues, a nurse set up all her meds for her, visited regularly to check vitals, and an Aide came twice weekly to bathe her. All this was covered by Medicare at no cost to her (not the apartment). She was not bedridden and I took her to all Doctor appointments and hairdresser. When she began to regain her appetite and gain weight she no longer qualified for Hospice but was put on Home Health who basically did the same things for her. She had a stroke and passed away about 4 yrs later at 92, while in Assisted Living.
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Palliative care is different from hospice. Your mom will still get treatments that can help with the symptoms of her disease. If she gets an infections, she will still get antibiotics. If she needs tests, blood work, or imaging, all that will still be done. However with palliative care you will be treating the symptoms of the disease rather than focusing on curing it.
Palliative is different than hospice, which focuses mainly on comfort interventions.
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For yourself and for her- do consider at least a few hours a week!
It can take time to find the perfect match caregiver- one you trust, one who is dependable, one with a certain personality type, one that is trained (often by you personally) to your mothers unique needs and likes, trained to her routine, etc.
And anything could happen to where you might need one!

It’s also good for you to have times of refreshment! It makes you better! And it also makes it better for you later….. you’ll need your own life/identity outside of being a caregiver! (To ease grief!) But getting out once a week to grocery shop or bank or church or library or a caregiver support group- would be healthy! What if you get sick? What if your back goes out? What if there’s a reunion or wedding or birth of a child? It’s just good to have that in place!
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Since your mom's disease is a rare form of Parkinson's, a Parkinson support group may help you.
However, after reading up on the disease you would be wise to take advantage of the palliative and eventual hospices services being offered. These services will comfort you as well as your mother.
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To answer your question literally, ‘hospice’ and ‘palliative’ are just words. They mean different things in different places and different times. Google ‘in history’, and you get “From the Latin hospes, meaning “hospitality”, they were buildings that gave shelter to pilgrims. They were also places established by the Crusaders for treatment of the incurably ill”. Often they took in babies left on the doorstep. In Australia, palliative care usually covers what hospice does in the USA - the words are often used interchangeably.

To understand the precise difference, you need to check your state laws, funding, your insurance policy, and even the rules of each service.
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Been there with both. Here's my take.

Palliative care is there for people who have an illness that will eventually end in death, but still want to be treated for that and the other maladies they have.

Hospice care is for people who have a terminal illness and basically want to die. Usually the drugs they are on are stopped, and pain medication (morphine) is started.

I've had relatives go through both, and this is my opinion and what I saw...
Hospice people are 'on a mission' and think that what they are doing is good for the dying person. They usually come frequently, push morphine saying the person is in pain (even if they are not), and 'take over'. In each and every time, they created 'drama' that didn't need to be created in the home of my dying relative. We all knew the various relatives were dying, so no one in the family was 'trying to save them' or be contrary to what Hospice was supposed to provide. It was probably the worst experiences of my life. It felt almost 'cult like'. The relatives would have died, no matter what, but I felt they pretty much drug-induced a morphine coma and each and every one died sooner than what their medical professionals said they had.

Palliative care is usually a nurse and / or other care providers that come to check vitals, administer drugs or treatments. They are usually not trying to push any agenda, and usually don't push pain meds unless prescribed. They may provide insight into the direction of the person's death journey and may offer up advice that the end may be near. There's usually signs like not being able to swallow, etc. that they keep track of. I had three relatives on palliative care and their end was mellow, progressive, and each time the care team gave us a heads up that the person may only have days/weeks to live. The patients were kept on their meds, so unlike Hospice, no one had strokes (which is common when you pull people off meds like high BP meds), or other complications. Two fell into the 'death coma' peacefully and died the next day. The third their heart just stopped.

I really don't care what anyone on this board thinks - I know for a fact I would NEVER offer up Hospice to anyone in my family going forward. All of this hospice was at home, so not talking about a hospice facility.

The service is being offered probably because the care staff can then come to the home, insurance pays for treatments and/or healthcare items, or pays partial. It's more for the patient so they don't have to go to the doctors office but can still get treatment.

A support group is a great idea. Also follow your gut about how you feel about what care your mom needs. Best of luck.
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ConnieCaretaker Jun 2022
I was very grateful that my mother fell into her coma; when the nurse called to tell me her new status, they never mentioned how that happened, but I know Morphine is the drug of choice in the medical field. I was just grateful that a 9 month nightmare was over and my beautiful mother was no longer in pain..............that's all that really mattered. Her Oncologist was a useless human being as he never offered pain meds throughout lung cancer. She had been given a 3 month max life expectancy, but her stubbornness kicked in and she became adamant that she would wait for her grandchild to be born, thus the long and dreadful 9 month stretch of agony. Life and death were at the same door and at the same time.
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Hospice is not limited to end of life. It is for incurable, debilitating conditions that are deteriorating medically. Thus the reported contradiction of 6 months/long term. Hospice is a full supportive team for the patient and family. Palliative care is just relief of pain/discomfort for the patient.
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Do it! Every caregiver needs support, no matter who they are or how experienced. Follow her doctor's advice. Palliative care is tailored to the needs of the individual patient. Once you get their help, you'll kick yourself that you waited this long. They will supplement your care, not take over. You'll not be pushed aside.
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If I were you I would contact the Hospice/Palliative Care organization you wish and ask them to evaluate your mom.
There are advantages to Hospice that you would not get with Palliative
You would get all the Supplies and equipment that you will need delivered while she is on Hospice. With Hospice you would have the services of a Nurse that would come each week, more often if needed. A CNA would come at least 2 times a week to help bathe or shower you mom, order supplies, change bedding if needed. A Social Worker, Chaplain and some Hospice offer "therapies" like music, art, reiki if you wish to take advantage of these. And an awesome benefit that is provided with Hospice is about 1 week of Respite each year that will be paid for by Medicare and most other insurance.
A person can remain on Hospice for longer than 6 months as long as there is a continued, documented decline. (My Husband was on Hospice for almost 3 years. I would not have been able to do what I did without the help from Hospice)
It never hurts to make that call for the evaluation. If she does not qualify for Hospice now Palliative is a "baby step" and the Palliative Care team can let you know when it is time to take that next step.
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You may be able to find support for you through your local Brain Injury Association. I know it's not an injury, but they do help with coping with any brain issues. Each state has one. And they also have great referral services and maybe can help you find more specific support.
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Both offer palliative care. Hospice tries to make comfortable the last journey of a terminal patient. Palliative Care also attempts to make comfortable an incurable patient, but who is not in his last terminal journey.
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My experience with the 2 are that while under palliative care, a nurse will come out once a month to check on the patient, and that's about it.
But while under hospice care, a nurse will come out once a week to start, and aides will come at least twice a week to bathe the patient. Hospice will cover all needed equipment, supplies and medications all covered 100% under the patients Medicare.
You will also have access to the hospice social worker, chaplain, volunteers and any other services your hospice agency may offer.
However to qualify for hospice care, the patient must be thought to only have 6 months left to live per their doctor. That being said though, my husband was under hospice care in our home for the last 22 months of his life.
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https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

Above link may help. The National Institute on Aging is usually a good go-to for answers to questions such as this.
The basic difference is that Hospice recognizes that there is no treatment or that all treatments have already been tried or that treatments are enough a burden that the patient has decided they wish to take no more. And that death is expected to occur within a 6 month time frame.
While Palliative Care includes all the support that Hospice does, there are times it is not covered by insurance in the same way and you DO have options for treatment. In Hospice there is NO TREATMENT unless it is for comfort measures.
Palliative care is a medical sub-specialty, and there are physicians specially trained in being Palliative care specialists.
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Very roughly -

Palliative care includes any treatment regimen which is aimed at maximising a person's comfort and quality of life but does not attempt to cure a given disease, or to treat it beyond any measures which improve the person's own sense of wellbeing.

Hospice involves palliative care but is designed to maximise comfort and wellbeing once a person is reaching end of life. Eligibility for admission to hospice care normally includes the criterion that the person is not expected to live for more than six months (and may be actively dying).

Would you like to say a little more about why you're asking? It would help us give more supportive answers.
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KPWCSC Jun 2022
When we used Palliative care, we were allowed to continue all therapies as well as search for new ones that may bring a cure. Always ask that question of the providers you interview. State and local laws may dictate. The main benefit is we had a social worker who could help make connection to other services.
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