Putting My End Of Life Plans in Place: Very Emotional

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
  • Working with The Caring Advocates organization to 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.

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12 thoughts on “Putting My End Of Life Plans in Place: Very Emotional

  1. Oh Kelly,
    I am so sorry you are going through so much right now. This virus is enough to put us all in a tail spin that’s for sure!!! I continue to pray for you and hope you know how much you mean to me.
    With Love,
    Tina

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    1. Thank you, Tina. I know you are very supportive of me and I appreciate it. You have more than enough on your plate as well. Take care of your lovely family. I love you.

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  2. Kelly,

    Thank you for sharing your story, and how you are approaching this really challenging step. I live in Washington State where we have a right to die choice. The organization, End Of Life Washington, has excellent resources for those living with dementia. I hope this might be of support to you and your husband as you research and discuss your options.

    https://endoflifewa.org/choices-and-planning/dementia-directives/

    Take care!
    Kathleen

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    1. Kathleen,
      You are such a blessing. I wasn’t aware of this resource and I have looked at plenty of them. I truly appreciate you reaching out to me. If you hear of any others, please let me know. Thank you, thank you, thank you.

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  3. My husband & I own a facility (our home) for victims of various dementias & of course AD. I felt compelled to respond to your (beautifully written blog) because a lot of the residents we’ve had are in their late 90’s. Yes, early – onset is a different beast however the life expectancy’s in our home has proven to be much longer & fuller than ever before time & time again. In addition to that, please know my job may seem like the most depressing one anyone could choose having but the truth is that it’s not at all. Life is difficult sometimes & hardships definitely happen frequently but for the most part….we are so happy. I feel very strongly that you will have so many more happy memories to come & am happy you are such a brave women who has chosen to share your strength….especially right now in the times.

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    1. I would like to find a facility like that in someone’s home here in Florida rather than a nursing home. I don’t want to burden my husband with caring for me. I did it for two of my relatives and it is overwhelming. Thank you for reaching out and please follow my blog. Stay safe and God Bless.

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  4. Kelly, you are still hugely inspirational as you have always been. This may be some of your greatest and most important work. You possibly don’t always realise that you are still delivering great value to a wider audience but you are! Sorry we couldn’t catch up when you were in New Zealand, Hope you enjoyed our little country anyway!

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    1. Thank you! We absolutely loved New Zealand. What a beautiful country. We went to Queenstown, Milford Sound, Mt. Cook, Rotorua, Picton, Christchurch,Wellington and Auckland. Outstanding. I am glad you are finding value in my blog.

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