“Palliative Care, What?" 😱 Chapter 113
“When you are ready, we are here to assist you with your transition.” Transition? WTF? This was one of the first things I was asked 2 1/2 years ago.
I don’t know about your experience with your ALS team, but I sure do feel like I am getting more “let’s make you comfortable“ these days than “let’s see how we can help.” Am I a little bitter? Hell yes I am. To many PALS, this already feels like a death sentence without a crime. I truly am innocent and have a first year Defense Attorney on my side. There’s only one team that seems to have answers to help, “Help me die!”
The first time I met with my ALS team, we met with several different specialists; Neurology, Physical Therapy, Occupational Therapy, Respiratory Therapy, ALS Care Management, and Palliative Care. Each team explained what they do and how they can help. We would meet with the team either in person or via Zoom, with each meeting lasting about three hours long.
Our first meeting with the entire team was two and a half years ago on Zoom, and we discussed ALS and possible changes that might occur as the disease progressed.
The Neurologist explained the disease thoroughly and had me do some exercises. Close your eyes tight (which I did and crushed it), but today, if you tilt me the wrong way, they pop open. He asked me to sit up, bend over, and raise my arms... I can’t do any of these things anymore. Because of that, there have been less test or exercises and more “how are you feeling?” questions.
PT/OT started with twice a week therapy sessions at home, and now they don't see me at all. We were told that PT/OT treatments are intended for the healing process, and since I was regressing and not progressing, therapy sessions were stopped. They do still assist with equipment that is needed to keep me comfortable.
We continue to work well with the Respiratory team as they continue to support our requests and needs along the way.
The Palliative Care team, the one team I really don’t want to meet with, is the Grim Reaper of my care team. From our very first meeting they brought the conversation straight to stage five, without explaining their role in advance. They attended every meeting, and each time Laura and I just looked at each other with a puzzled look. However, over time, I can now see that their role on the Care Team is just as important as everyone else.
The five stages of palliative care are:
1. Early-Stage Care:
Focus on maintaining quality of life and independence.
Assessment of symptoms and care needs.
Development of a care plan.
2. Unstable Care: Fluctuations in health status, Adjustment of care plan as needed, and Increased support for the patient and family.
3. Deteriorating Care: Progressive decline in health, Emphasis on symptom management and comfort, and Preparation for end-of-life care.
4. Late-Stage Care:
Focus on providing comfort and support in the final days.
Management of pain, shortness of breath, and other distressing symptoms.
Emotional and spiritual support for the patient and family.
5. Bereavement: Support for family and friends after the patient's death, Grief counseling and resources, and Closure and healing
To be honest, saying I need Palliative Care to me is the same as telling the world that I give up, I quit, or I surrender. If I didn’t have faith in God that a miracle might still happen, maybe I would have quit a long time ago. The fact is, I believe I am in this fight for a purpose. Bitter or not, I can’t imagine being a medical professional and knowing there’s no known cure for ALS, and every one of my patients would eventually die. What can these professionals do or say when someone comes to them, already having been given a death sentence? The only team there in the end is Palliative Care, and instead of looking at them like they are crazy, we should embrace them for who they are and what role they play on my team. I am not saying that you should accept your fate, but I am encouraging you to be prepared.
Love and Blessings
I love to read your comments and hear your stories, so please rate my posts and leave a comment below.
Dear David,
This is the subject. No one wants to talk about it or dare speak about it. For many, they would rather stay in denial and not be able to accept that specific care is needed for our eventual transition from the life we know at present to the eternal Kingdom of heaven. I have been following your story from the very beginning. And your contributions to the world’s understanding of living with ALS are so valuable. A first person perspective provides the opportunity for empathy and insight the way that reading about it from another source just doesn’t. While I am grieving in the knowledge of what is to come, my heart rejoices that you have chosen to…
David,
This is a very important topic because the healthcare system has its "processes" but that doesn't mean that they fit the situation. Good for you for fighting the norm. But I will say that these experts were incredibly helpful to me for at least 8 months after my husband passed away from ALS. They called weekly, monthly, plus on every holiday, anniversary, & birthday. They also sent numerous cards and packages. It's so tough because you want to keep your mindset so clean - not letting anything but positivity stick to you. Having worked with you recently, I can't even imagine this scenario knowing how communicative and uplifting and prayerful you are (and I'm sure will continue to be). But…
I can't imagine an ALS world without you in it. Keep fighting the good fight because this community needs you!
We never met with my husband's ALS care team as a whole; rather, we saw one after another until we ran the gamut. After my husband became bedridden, he began experiencing extreme pain in his knees, likely due to a number of falls after which he would always say "Oh, my knees". It was impossible to get him out of bed into his PWC, since bending his legs left him in agony. I began advocating for him to receive knee injections to deal with the pain and stiffness. The palliative care doctor, who came in late in the game, kept…
Ugh. This had me in tears 😭 praying for you every day and already looking forward to enjoying and learning from your next post! Love and hugs! -Bobbie-Jo
I’m not ready for you to be gone from this earth! I believe in a full recovery and a true treatment for all going forward. You will be victorious!