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-   -   Caregiver of 2xAML and stem cell survivor. Chronic pain and poor processing skills (https://www.neurotalk.org/caregivers-support/230930-caregiver-2xaml-stem-cell-survivor-chronic-pain-poor-processing-skills.html)

Imdianeg 01-11-2016 05:25 PM

Caregiver of 2xAML and stem cell survivor. Chronic pain and poor processing skills
 
This is my first post, so, please bare with me. My husband has cheated death 3 times! Twice beating leukemia, and the third time surviving a stem cell transplant (SCT). And while I do count my blessings, the man that is left, is in chronic pain, suffers from both GVHD and PN. He takes 80 pills A DAY to stay alive. He is by nature a very hard working and stubborn man. Which has been a positive infighting his disease but a negative and being compliant with his limitations. This puts me in the nagging wife/caretaker role more than I would like to be. Additionally, because he pushes so hard he often is asleep by 5 PM which makes me feel lonely many many nights as this is going on five years. He is unable to communicate his own pain/losses and in capable of recognizing the changes that this disease process has brought to me. Additionally, he is beginning to show many problems with processing and becomes emotionally annoyed when corrected or I try to assist. As a stem cells survivor he is not necessarily terminal but is easily brought down by any disease that he becomes in contact with. Additionally the complications of GVHD are severe life altering and progressive. I want to be there them for him, but my patience is often short, and I am feeling burned out, and yes even selfish...
Wondering if someone can help steer me to the right place for me, not him.


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