Relieve me of the Bondage of Self

teeebone

Sorry in advance this is a long one 🤣. I am 68, diagnosed about a month ago, start Kisunla on Monday, and yes, I am scared shitless….. I do the finances and I do the planning for my husband and I so today we are going to a financial planner to try to find a way to protect assets for him, Friday we go see the lawyer to update our POA and possibly open up some kind of trust, Miller trust or something similar, again to protect assets for him, he thinks this is not necessary yet !! He does not understand that we have to do all these things while I'm still deemed competent to sign papers !! We don't have a lot of money so I assume long-term care will be Medicaid so we need to start our 5 year look back period now. I am a nurse and I have worked in a long-term care for 30 years. I know exactly what end stage dementia looks like. I admit right now, I am still a little bit on my pity pot, and working on that ….this is not the retirement we had planned, but here we are. My goal was to grow old gracefully, but that "ain't" happening. So now I'm going to try to be of service to my fellow human beings ( while I still know what's going on) and stay out of my head because that can be a dangerous "Neighborhood" so much gloom and doom there. My husband is the best man in the world, and no matter how hard I try to educate him, he cannot wrap his head around what life is going to be like with me in the near future,….but my fear is I will outlive him, and I don't want to be a burden to my daughter ….to be honest looking into Medical Assisted Aide in Dying (MAID) legal in 13 states, but unfortunately not mine. Today, the sun is shining, I'm going to go for my walk, and then start looking at places that I can volunteer. Every day I pray for all of us on this site❤️🙏

STAY WELL

jaycey

I'm so sorry that you need to join the community nobody wants to be a part of.

I lived what you are living 2 years ago. And, like you, I remade my will, and started giving away jewelry and other items to my loved ones. I collected brochures on memory care, and looked into Medicare options.

I went back to vigourous exercising, forced myself to renew social contacts, made myself sleep longer every night, and continued exercising my brain with scientific articles.

I also contacted a thanato-doula, and I strongly recommend that. In the same way that doulas help babies come into the world, thanato-doulas help people plan to leave the world. They are part therapist, part lawyer, and 100% empathetic as well as smart about the steps one needs to think about.

But, here I am 2 years later. After 6 Kisunla infusions my Centeloid score went down to zero and while the past damage to my brain won't go away, I'm probably not going to have the downhill slide we're all so worried about.

So, don't give up. Do the things that protect your brain (see my list above), do your infusions, and while making plans for the worst, make sure to keep in mind that it's not the only outcome.

DavFL

https://alzconnected.org/discussion/77538/relieve-me-of-the-bondage-of-self

I was diagnosed last July, I’m about to turn 76. Understanding is a matter of my learning, plus accepting the realities. Neither is easy. He is lucky he has you to help. Both my parents had, and my 85 year old sister has Alzheimer’s. That exposure has been very useful in my journey so far. My wife has experienced my family’s journey, so she is as ready as anyone can be. We both are naturally anxious, but knowing and accepting (so far) is helping us day-by-day. We are reaching out to family and friends, as well as to related organizations, and all have been empathetic and helpful. We will continue to reach out to others as long as we can. Patience, patience, patience. Best wishes to you both.