My brother Rick, passed away unexpectedly on February 8, 2020. He was only 55 years old.
Growing up, my brother hated me and I was terribly afraid of him. Needless to say we had a horrible relationship but our God is a God of restoration and He opened the doors for the healing and restoration of our relationship which I am forever grateful for.
With my brother’s passing came a whole new load of responsibilities for me:
- handling all the arrangements for his cremation
- flying out to Mississippi with my mother to pick up his cremains and pack up his personal things
- load everything up and drive his vehicle back to California
- make notifications to his accounts and sent Death Certificates when required
- make arrangements at the VA Cemetery for interment and arrangements for the Celebration of Life
- cancel all arrangements due to Covid-19
It has been over 3 months and I am still trying to settle his affairs and there are still so many to settle. The biggest and most important responsibility that has been bestowed upon me has been my sister-in-law. I’m a care-taker and a rescuer so this new responsibility wasn’t really anything I couldn’t handle or didn’t want. To me, it was just another responsibility that I would manage and I have. You see, my sister-in-law, Jeanna, has Huntington’s disease.
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
Jeanna currently resides in a VA facility just over an hour away from me. The disease has progressed to the point that she needs 24 hour care. She is bed and wheelchair bound, cannot speak, and is considered “catastrophically disabled” by the VA. Because of her illness, we have not told her of my brother’s passing. She knew he moved to Mississippi and he was trying to have her transferred out there but was running into several roadblocks. It was a very hard adjustment for her when he left. She stopped eating and started self-harming again and it was months before the behavior finally subsided. The doctors and I decided it would serve no purpose to tell her about Rick’s passing. Now whether that is the right decision or not, it is the one I made.
The one (and only) thing my brother did put in place before he died was the medical power of attorney for Jeanna. He made me the 2nd power of attorney and therefore, I became the first upon his passing. I had a bit of an understanding of what this meant but the full impact did not hit me until the doctor called me to discuss.
We discussed the fact that Jeanna was no longer able to eat solid foods and if she aspirated would I want a feeding tube inserted. Then we discussed Covid-19 and if Jeanna came down with a fever or other symptoms, should she be transported to the hospital or just given comfort care. That’s when it hit me! The full weight of the decision of whether she lives or dies is on my shoulders. I cried. The doctor encouraged me to think about Jeanna’s quality of life over the length of her life. I knew what I wanted for Jeanna but it was a decision I did not feel I could make without her father’s input.
A week later I had a conversation with her father. He lost his first wife (Jeanna’s mother) to this horrible disease and his son (Jeanna’s brother) is also in a care facility with advanced stages of this disease. He has grandchildren with the disease. My heart breaks for him as he knows the devastating effects of this disease and the progression, and it has taken and will continue to take so many from his life. It is his wish that his daughter not suffer any longer than she has to and I agreed.
I called the doctor back last week and let her know our decision. This, by far, has been the most difficult and heart-wrenching decision I have ever had to make. I know it is what Jeanna would want…to be free of the pain and suffering.
This one decision has unsettled my heart more than any other decision I have ever made in my entire life and it has had a profound effect on me. I hope to never have to make it again but understand that life makes no promises.