Palliative Care

Tuesday will be my first appointment with Palliative care. I’m excited, nervous, overwhelmed and terrified all at once. I don’t know too many people who have utilized the program so I don’t have many experiences to draw from. I figured I’d blog about my own experience.

From what I understand, Palliative care is for those with an incurable illness that causes significant quality of life issues. Well, I have that. It should provide care to help with quality of living, social work, counseling, pain management, and community related needs.  It’s having someone monitor all of your issues and helps keep things organized. I hope.

I was told my first appointment will consist of me meeting a social worker and their pharmacist. I’m nervous, hopeful, and cautious. I’m in pain management and have a contract with my pain management doctor and I’m not sure if they take over that area or not. I guess I should call my pain management doctor and inform them?  It’s all confusing to me. I’ll wait and see how things go..

So today is the day. My brain is a mix of anxious thoughts, concerns, relief, nerves, and excitement rolled into one mass of mushiness. My medicines are all bagged up and ready to go. It’s required I bring them all. I’m not bringing my oxygen tank though it lists that as well. I currently use oxygen for migraines that are cluster like but I can’t imagine trying to lug that thing or rather hubby lug that thing along with all my meds, papers, and me in tow. So that will get left behind.

My husband has taken a half day off so he can attend the appointment with me. It asks for caretaker support to come along if possible and well, he’s it. I’m hoping down the road, once established and if it turns out to be what I’m hoping it will be, well, I’m hoping they’ll learn more about my illnesses and when they have a grasp of understanding as to what I suffer, then I’m hopeful they’ll send someone to my home to talk to my family. To help them truly understand what I am going through, how it affects me, the help I really need but am too afraid to ask.

To be continued….   (Will update after)

I’m not sure how I feel about the visit I had with palliative care. I was suppose to meet with a team of 4. My team. An NP, pharmacist, social worker and the doctor. The doctor was not in that day. Apparently he’s only in on Monday’s. I met with all three remaining members and discussed some of my issues. They asked me why I was there and what I hoped to gain. I didn’t want to focus on pain but in the end, I focused a lot on pain. They want the truth? The truth is that I’m hurting. Bad. When I hurt, it is not hard to dwell on the pain tearing me apart. If I can cover the pain, I am more able to attend to the other issues I need addressed.  After meeting with all 3 together, I was to meet with each one individually.

I met with the social worker first. She was really nice. She looked up resources in the community that may be available to me. She gave me information on counseling service and one or two that will come to the home. That’s what I’m looking for. That’s what I need!!  I need home care! Ultimately, it sets me back and flares me up each time I leave the house.  The prep, to shower (depending on when I showered last…), to change, to mentally prepare for leaving, the drive. I think the worst of it is sitting in another chair, table, place, that is not my own. I was at the palliative care office for over 2 hours. The day after my hip bones felt like they were being ripped apart, the pain was so intense. I need to start bringing my cushion when I leave the house, an added layer of support for my flesh-less tailbone and lack of butt muscles. They showed me one of the service dogs out for a visit. She offered pages of service providers that offer home aid such as bathing, cleaning, cooking, shopping, or simply to talk. It’s not awfully expensive but it’s not cheap but insurance won’t cover it so it’s an out of pocket expense. I can hire for one day a month, a week, a year, my choice, no contract but they do require a minimum 3 hour day per visit which works out to being $60 to $75 for each visit. (I really should re-apply for the family caregiver program through the VA).

I met next with the NP. She listened to my complaints. One of the issues she had was that I’m still seeking care and testing and not just focused on making me comfortable and accepting my condition. Problem is, I don’t know what else I have so I need to investigate the newer issues that had presented themselves that I’ve been chasing down for the last year or 5 with no answers and no doctor interested in exploring it. But that’s for another blog… She put in her plan to call the hematology office to implore them to set the appointment I’ve been fighting for for the last few weeks. She is suggesting to my primary care doctor to order the 2nd MRI on my hip so we can look for any changes or things missed that may have been too small to discover the first time around. (My hip pain has gotten worse on the left side). She put in a request for physical therapy to come to my home, so desperately needed and why I quit the last one. (I NEED home care. I have no excuses to quit when I don’t have to travel to them) My muscles are gone. They are atrophying at an alarming rate and my butt is the worst of it. I need help!!

I never did get to see the pharmacist for a solo visit. It didn’t matter to me in the end if he’s not taking over my med management.  I’m not sure if she is going to suggest more pain med help from my pain management doctor or not. I’m simply to afraid to ask her myself. (pain doc). She is looking into a nutritionist for me. She highly recommends I get counselling and I agree, I really do. It’s consuming my mind here recently and I’m feeling panicky and anxious and like death is chasing me and no one cares. We didn’t set up a follow up visit, but they’re my team now. I can see the doctor for help if needed. I can call if I need help with something. I hope just being apart of the team will help me in the end and I don’t regret asking for it but deep down inside I still hear the small voice calling out out to me, snickering, judging me, telling me I’m just an overly anxious female with symptoms that only exist in my chaotic mind.

With time, we’ll see if it was truly worth it. For now, I’m glad I went.


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