Hi everyone. Here to post a happy update.
My wife 'graduated' from hospice care effective June 6. I learned through this process that, while in hospice care, the hospice team had to certify her status every 2 months. Part of that certification was answering the question, is the patient within 6 months of the end of his/her life? They had answered yes to that every time until the most recent time, when they answered no. This is obviously a great development for us. It is in large part a credit to the excellent quality of hospice care she received. I am eternally grateful to those nurses.
My wife is still in a very challenging state of healthcare. She has not been out of our bed since last September other than for medical transport to and from the hospital. She has a catheter and multiple wounds that will continue to require home healthcare. She also still suffers from severe chronic pain, although she is no longer on the pain pump, which is a good thing.
In addition, while in hospice care, everything is centralized and generally covered without insurance challenges. Everything is also delivered in the home. Now, we are adjusting to new providers, back to the normal state of healthcare insurance challenges, and will have to figure out how to transport her to appointments out of the home.
But... these are great challenges to have.
Once again, I really appreciate the support I have gotten from this community. Because of my wife's condition, she is largely isolated, and that has made my life largely isolated, other than going to work (and living with her parents, which is often like living in a sitcom...). This forum has been a great place to come to take my mind off of these challenges and also to get support for dealing with them.
Here to post a less happy update. I just need to get some of this out, so appreciate you all reading. I can't talk about some of this with my family just because we are all too close to this.
My wife was referred back to hospice care about 5 weeks ago. Due to insurance and other issues, we have been in limbo throughout that time and still are... trying to understand if she is going back to hospicae care or to in home palliative care (if we can determine that is actually a thing in our area, as it should be IMO), or staying in her current level of care.
She is suffering terribly. It is very hard to watch, and I feel very helpless. I came home from work today to find her crying in terrible pain. I did what I could, which isn't much.
The way our system works, she is an outlier with regard to pain management. Under normal health care, she cannot get adequate pain management, which is our current situation. When in hospice care, those limits do not apply,... which helps her to the point that it leads to the impression that she doesn't need to be in hospice care... but returning to regular care, she cannot get adequate pain management. It is a catch 22.
When she 'graduated' from hospice care, I expressed this exact concern to her caregivers. I predicted exactly what has happened. And here we are, waiting for a determination.
We live with her parents. Her mother is beside herself with emotion over this. I worry about her, too.
I am normally someone who is fairly impervious to stress, but I have to say that this is getting to me. I can't solve this problem, and it's killing me.
Thanks for letting me vent this out. It helps. I appreciate all of your support.
