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My mother’s Dr. has signed an order for palliative care - up to us whether we want to put the care in place.
My Mom & Dad live in their own home, my brother and/or I are there nearly every day. I know palliative care is only a visit once or twice a month, just wondering if it is helpful or if the disruption to their “routine” wouldn’t be worth it.
Curious about others experiences.

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My dad has palliative care and it is extremely helpful! We look forward to meeting with his doctor every 3-4 months. We have seen Dr. Chris more frequently when there have been problems with my dads health. The doctor takes his time to ask my dad how he’s feeling and will ask important questions of my dad about his health. Dr. Chris is very knowledgeable and will explain issues while using a white board which is very informative and easier for non medical persons to understand while not dumbing it down.
The doctor is kind, patient, sensitive to his patients needs and will help order meds, guide you to whom you should be seeing and calm his patient and the family.
Palliative Care is a wealth of knowledge, guidance and help given to the patient when needed/asked for. I didn’t understand what palliative care was about but now I do. The dr is familiar with my dad and all his illnesses and problems they cause. We still use dads specialists and PCP but we now have extra help and what a Godsend it is. There’s someone to call for help when you aren’t getting anywhere with your other physicians for one reason or another. Should my dad get worse palliative steps in when it isn’t time for Hospice. It’s like having an angel watching over you in the health field. Palliative care is one of the great things about health care!
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Reply to Maria54321
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My mom was on Pallive care for about a month then went on hospice which covers supplies and meds. Nurse comes in once a week. But can request more visits if needed. Had to hire paid help to keep mom and dad in thier own place and not AL it's hard when there's limited family members to pitch in.
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Reply to Birdsflysouth61
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LloydS: Do put in place the palliative care.
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Reply to Llamalover47
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I feel like our situations are similar, my parents live on their own, but I am there daily for several hours a day to help out and so my dad can go to the gym, errands etc. We engaged palliative care for my mom who was really struggling with depression after a hospital stay and recurrence of swallowing issues.

The best thing I feel she got from the initial visit was being asked what her goals were. No one had ever actually asked this. It gave her some say I felt in her care and motivation. Some of them can write Dr orders, mom's can't but she can ask the doctor to, which in the future could help if mom is not up for going there in person. It can't hurt and if it's too disruptive they can always discontinue...

The assessment was long and that was hard as mom was sick of answering the same questions over and over, first in the hospital by each nurse, doctor and specialist who came in it seemed as well as home nursing, speech and pt!! It got to the point my mother started answering the neuro questions ahead of time it was hilarious. She also gave the date and when they said it was wrong my mom said "well you'd better change the calendar on the wall then" and she was right!

She hasn't had the 2nd visit yet, and we almost didn't even get to that but mom agreed to have another visit end of June.

It can't hurt to see what it's all about for them and let them decide.
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Reply to casole
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Di1961 May 30, 2024
Understand everything you have went through.
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I think my mother would benefit from palliative care, but it is not available where she lives. I read a post (not sure if it was this forum or another) that palliative care was available virtually. I have not looked into it yet, but wonder if anyone has any experience with it.
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Reply to Learn2Cope
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Palliative care is worth it. Little things come up and it is helpful to be able to ping the palliative nurse for guidance.
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Reply to ThomasY
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In 2014, my mother had palliative care, and the staff took good care of her. She could stay in her same private room as AL to hospice level the last year of her life.
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Reply to Patathome01
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We are in a similar situation and are meeting palliative care doctor next week. We were told it would make things easier because they are more an available and certain things could be done one home. Labs, PT, wound care etc . I’ll update after
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Reply to momtomymom
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Take all the help you can get .
Having a fresh set of eyes coming is good . They will notice differences that you and your brother may miss because you are there so much . This may help avoid some doctor visits or trips to the ER.
It will also get your parents used to help coming into the home . This is good for down the road if you decide to hire help to come in more regularly .
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Reply to waytomisery
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MiaMoor May 25, 2024
I completely agree about having another set of eyes. We can fall into a pattern of how we do things that might not be as useful later down the line, so getting any other input can be helpful.
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Palliative care won't be much of a disruption at all since they only send out a nurse once every 4-6 weeks, and don't do anything else than that.
Hospice is a whole other story as they will have a nurse come once a week to start and aides to come at least twice a week to bathe your loved one, along with social worker, chaplain and volunteers(if requested)as needed.
Now that is disrupting for sure.
When I initially looked into hospice care for my late husband back in 2018, I was told that at the time he only qualified for palliative care and that a nurse would come once every 4-6 weeks. I saw absolutely no need for that as that would not be helpful to me one bit.
However later in 2018 when he almost died from aspiration pneumonia, he came home under hospice care until his death in 2020.
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Reply to funkygrandma59
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I always chime in here when questions about palliative care arise. As Lealonnie shared, the goal is to improve quality of life and manage symptoms, which can include decreasing the number of doctor visits. My husband was under palliative care for six months before transitioning to hospice and it made a big difference in our lives. For one thing, I didn’t feel so alone in dealing with medical issues as his sole caregiver, and he received individualized care for at least an hour every 3 to 4 weeks(as often as needed).

He had to keep his primary doctor, although we used the nurse practitioner for everything and her notes were sent to him(I did have to follow up initially to make sure this happened). She was able to prescribe all medications and did a really nice job of educating him on end of life issues, respecting his wishes all along. My only complaint is that there was no on-call service because of course, everything happens on the weekend.
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Reply to MidwestOT
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Definition of Palliative Care
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

Palliative Care Improves Quality of Life
Palliative care teams focus on quality of life. They treat people suffering from the symptoms and stress of serious illnesses such as cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and many more.

Relieves Suffering From Symptoms and Stress
The goal of palliative care is to relieve suffering and provide the best possible quality of life for patients and their families.Symptoms may include pain, depression, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping, and anxiety. The team will help you gain the strength to carry on with daily life. In short, palliative care will help improve your quality of life.
And recent studies, including one published in the New England Journal of Medicine, have shown that patients with a serious illness who received palliative care lived longer than those who did not receive this care.

Helps You Match Treatment Options to Your Goals
The palliative care team also spends the time it takes to help you match your treatment choices to your goals. They will also make sure that all of your doctors know and understand what you want. This gives you more control over your care and will improve your quality of life.

Works Together with Your Other Doctors
Palliative care teams are specialists who work together with you, your family and your other doctors. They provide an extra layer of support when you need it most. In addition to treating your symptoms and stress and supporting you and your family, the palliative care team communicates with all of your doctors so that everyone is on the same page. They support you every step of the way.

I have palliative care in place for a cancer diagnosis. The M.D. prescribes antidepressants for me and the social worker asks if I have suicidal thoughts. Then I get an online survey about my mental health. That's about it.
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Reply to lealonnie1
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MiaMoor May 25, 2024
I hope that you are getting the best care and sending you my best wishes.
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Look up palliative care. It is a good deal different than Hospice. You should actually, if available, get a palliative care MD. You will have access to more and better drugs if needed and you will receive better support. There can STILL BE TREATMENT unlike Hospice, which allows little in terms of treatment of hospitalization.
You will have, if this is a new MD, a first meeting, and I would encourage you to ready all your questions. If your doctors says that HE or SHE is the palliative care doc and that this is simply a different modality then ask your questions of this doctor.

Sure do wish you the best and hope others here who are currently dealing directly with Palliative care, this new "branch" of medicine, will have more and better answers for you.
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Reply to AlvaDeer
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My mother had palliative care for a couple of years prior to being on Hospice and it was not an interruption at all. They were just an "on call" service.
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