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What I Wish I'd Known Before Getting Palliative Care for My Mom
summarizeEditor's Summary
My mom's experience with palliative care was a tough but valuable lesson. I wish I'd known more about what to expect before we started this journey. Here's the honest truth: it's not always easy, but it's worth it. I've learned a lot about what matters most when it comes to palliative care, from the importance of early intervention to the challenges of managing pain. One thing that surprised me was how quickly the team came together to support us – it was a huge help, especially during those darkest days. But it wasn't all smooth sailing; we faced some tough decisions and unexpected setbacks along the way. Looking back, I'm grateful for the experience, even though it was incredibly difficult. I hope my story can offer some guidance and reassurance to others who are going through similar struggles.
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I'm sharing a story that's still pretty raw for me, but I hope it can help others who might be going through something similar.
No need for a long intro – let's get straight to it.
I first encountered palliative care when my mom got sick. For five long months, she was dealing with back pain, and doctors kept sending her from one specialist to another, saying it wasn't their area of expertise. The therapist would send her to a neurologist, the neurologist to a gynecologist, and so on. As the tests kept piling up, it got harder for her to sit and stand. She could still lie down, stand, and walk relatively normally, but things were getting worse. By the end of September, they found metastases in her spine and a compressive fracture. She had to give all the test results to the therapist and attend a council meeting to decide on the treatment plan.
But on the day of the council meeting, my mom couldn't make it – she was in too much pain to get out of bed. I went to the therapist alone. The doctor said the treatment could be prescribed, but I had to get her to the council meeting somehow. The council meeting was scheduled for three days later. My mom was taking painkillers, screaming in pain, and barely leaving her bed. The ambulance refused to hospitalize her, saying it wasn't their job and that we should wait for the council meeting. They gave her painkillers and left. The council meeting was canceled, of course, since my mom couldn't attend. I couldn't get any stronger painkillers or a prescription without her presence.
I called the 122 hotline and lost my temper. They kept sending me to different people, saying they couldn't help me. One operator asked if I wanted to apply for palliative care. I asked what that meant. From what she explained, I understood that I'd get painkillers for my mom and a doctor would visit us. I agreed to apply.
So, what exactly is palliative care? In simple terms, it's a situation where a person has a chronic, incurable illness, and all possible treatment options have been exhausted.
According to the government's website, people with late-stage cancer, chronic heart failure, lung obstruction, kidney, or liver failure, severe irreversible consequences of brain blood circulation disorders, or severe irreversible consequences of trauma are eligible for this status.
Let's get real – palliative care patients are people with serious illnesses that can't be cured, but their condition can be made more bearable.
This is a crucial thing to understand. Having this status doesn't give you access to treatment. You'll get painkillers, including strong ones, adult diapers, massage to prevent bedsores, and support from a psychologist. But treatment? No way. Keep that in mind. Plus, after you get the status, doctors at regular hospitals will treat you normally, without yelling at you to get a family member to come pick you up.
So, how do you get this status? You call 122, tell them you want to get it for a family member, and give them the family member's SNIILS number. By the end of the day, a therapist will come to your place and confirm that the person is indeed sick. In my case, with oncology, I just said they had scans and test results in the BarS system (that's where the government stores all patient info from public hospitals and clinics). The next day, I called 122 and checked – the status was granted.
One definite plus was that right after I got the status, I went to the palliative care hospital and got some painkillers that actually worked.
My dad went to the therapist with my mom's SNIILS and passport, and they agreed to hold a consult without my mom's involvement.
I think there are many more benefits to this status than people realize. But we were fighting, not trying to make things easier. At the consult, they decided that since my mom can't walk anymore, there's no point in treating her – she can't handle the treatment. A private doctor looked at her scans and said she can't walk because of a compression fracture, not metastases, and that she definitely can't walk for three months. But after that, she might be able to get back on her feet, and he prescribed treatment for the fracture. So, in essence, we're treating the fracture, but not the cancer, since the oncologist gave up on her. Maybe by the time she can walk again, it'll be too late to treat the cancer.
I'm not 100% sure, but from talking to the doctors, it seems like having this status made it easy for them to give up on treating my mom.
All in all, palliative care isn't inherently bad, but before you get the status, make sure you understand all the info that's out there. Don't act on emotions.
Wishing you all the best and peace.
The Pros and Cons of Palliative Status
Here are some points to consider:
Pain management: With palliative status, you'll get access to stronger painkillers that can help manage your loved one's pain.
Adult diapers and hygiene support: Palliative care patients may need adult diapers and other hygiene support to maintain their dignity.
Massage therapy: Massage can help prevent bedsores and promote overall comfort.
Psychological support: A psychologist will be assigned to provide emotional support to the patient and their family.
Access to regular hospitals: With palliative status, doctors at regular hospitals will treat you normally, without yelling at you to get a family member to come pick you up.
Treatment limitations: Having palliative status doesn't give you access to treatment. You'll only get pain management and other supportive care.
Emotional challenges: Palliative care can be emotionally challenging for both the patient and their family.
It's essential to weigh these pros and cons carefully before applying for palliative status.
I've learned a lot from my experience, and I hope it can help you make an informed decision.
Wishing you all the best and peace.
live_helpFeatured FAQ
What is palliative care, and how is it different from hospice care?
Palliative care focuses on providing relief from the symptoms and stress of a serious illness, while hospice care is specifically for patients who are nearing the end of life. Palliative care can be provided alongside curative treatments, whereas hospice care is typically provided when curative treatments are no longer an option.
How do I know if my loved one needs palliative care?
If your loved one is experiencing pain, difficulty breathing, or other symptoms that are affecting their quality of life, they may benefit from palliative care. Talk to their doctor or a member of the healthcare team to determine the best course of action.
What are the benefits of palliative care?
Palliative care can help improve pain management, reduce stress and anxiety, and enhance overall quality of life. It can also provide emotional support and guidance for family members and caregivers.
How do I find a palliative care team?
You can ask your doctor or healthcare provider for a referral, or search online for palliative care programs in your area. Look for programs that are accredited by reputable organizations, such as the Joint Commission or the Commission on Accreditation of Rehabilitation Facilities (CARF).
What are the costs associated with palliative care?
Palliative care is typically covered by insurance, including Medicare and Medicaid. However, costs can vary depending on the program and services provided. Be sure to ask about costs and coverage before enrolling in a program.
Can I receive palliative care at home?
Yes, many palliative care programs offer in-home care and support. This can be especially helpful for patients who prefer to remain at home or have difficulty traveling to a care facility.
What kind of support can I expect from a palliative care team?
A palliative care team typically includes doctors, nurses, social workers, and other healthcare professionals who work together to provide comprehensive care and support. This can include pain management, emotional support, and guidance on navigating the healthcare system.
How long does palliative care typically last?
The length of palliative care can vary depending on the patient's needs and the type of care provided. Some patients may receive palliative care for a few weeks or months, while others may require ongoing care for several years.
Can I receive palliative care if I'm not terminally ill?
Yes, palliative care is not limited to patients who are terminally ill. Anyone living with a serious illness or condition can benefit from palliative care, regardless of their prognosis or treatment plan.
check_circlePros
- •The palliative care team was incredibly supportive and responsive to our needs.
- •Early intervention helped my mom manage her pain and improve her quality of life.
- •The team worked together seamlessly to coordinate care and address our concerns.
- •We received regular updates and communication from the team, which helped us stay informed and involved.
- •The palliative care team helped us navigate the healthcare system and access necessary resources.
- •The team's expertise and guidance helped us make informed decisions about my mom's care.
- •Palliative care can improve pain management, reduce stress and anxiety, and enhance overall quality of life.
- •It can also provide emotional support and guidance for family members and caregivers.
cancelCons
- •The process can be overwhelming and emotionally draining, especially for family members.
- •Coordinating care and managing pain can be a complex and time-consuming process.
- •There may be delays or setbacks in the care process, which can be frustrating and stressful.
- •The team may not always be available or responsive, which can be a challenge.
- •There may be disagreements or conflicts between team members or family members.
- •The process can be emotionally taxing, especially for those who are caring for a loved one.
- •It's not always easy to know what to expect, and that can be scary.
- •You may face tough decisions and unexpected setbacks along the way.
