My husband and I just completed our #1 bucket list trip to Australia, New Zealand, Tahiti and Bora Bora. I thought I would post this picture to show you how lovely it was. We had a wonderful time but I knew I had a daunting task I had to start working on when I returned home. My neurologist \ told me right before we left for our trip that I have reached a point with the progression of my Early Onset Alzheimer’s that it is time to finalize my “end of life” plans.
I know I should not be having a pity party, but I have been very emotional the last week. My husband has struggled with consoling me. He keeps telling me that once we get this bad stuff out of the way we can focus on the good stuff. God love him. He is doing his best to keep me sane. Then we also have all this Coronavirus Armageddon to deal with. Sorry, I digressed. It seems unfathomable to me that someone at 58 years old has to be putting my final end of life plans in place but here I am. Quite frankly, it sucks. Plain and simple.
Obviously, my doctor was not trying to communicate that my death is imminent but it is imperative that I make major decisions while I still have all my cognitive abilities. I remember doing this with my Mom in her early 60s and now I am doing it in my late 50s. In the past week, in addition to dealing with the Coronavirus debacle, I have been:
- Research right to die alternatives because I really do not want to go into a nursing home like my Mom did. I don’t want to be a burden to my family and live that way. I have seen it with three of my relatives and this is not the way I see my last several years.
- I am NOT suicidal. In the event I can not do this peacefully through euthanasia, I am forced to start looking for nursing home facilities with memory care units I could go to. I want to make this decision, not my husband. I know what to look for since I evaluated them for my Mom, and I visited her every day for nine years and lived there for several months. I know what to look for. This is my decision. My husband and I have had some very emotional discussions about this.
- Documenting the final changes I want to make to my Living Will, Irrevocable Trust, Patient Advocate, etc
- Complete an advanced directive that will be descriptive enough to allow me to not live any longer than I need to once I reach a certain point in my life where I feel my quality of life has diminished to a point that is unacceptable to me.
- Begin research on in home care giver support, and hospice options. Again, I want to make this decision so my husband doesn’t have to.
So that gives you and idea on what I am focusing on. People who know me well always tell me how positive I am and the glass is always half full. That is a very accurate description of me 99% of the time. It wasn’t last, week, I assure you. I know I am in for some rough times ahead. But this, just like the Coronavirus will pass. There is a light at the end of my tunnel and I am working like hell to get past all this stuff and get back to enjoying my life.
Be safe my friends, and enjoy your time with your family while you self quarantine so you don’t get people like me, someone with a low immunity system sick.
Living My Best Life With Alzheimer’s 