I don’t think ii would ever hurt anyone. But in nursing if have seen severe cases. I just want to make sure their are safeguards for me in place. It scares the shit out of me.
So sorry to hear. I have worked with many cases similar to yours. First things first, as most have said you need to find someone you trust to be you power of attorney. Depending on where you live in the world this can look different so I would consult with a expert to make sure you are doing it correctly.
This disease is scary because you slowly lose yourself. Depending on how it progresses you may eventually forget everyone you know. You may maintain long term memories but likely your short term memory will be completely shot.
This means you will often be on a short loop of 5-15 minutes as it progresses. Quality of life is highly dependent on very to patient, kind, and understanding caregivers. It extremely exhaustive taking care of a person on this short loop.
Hearing the same story thousands of times. Constantly correcting behavior and a lot of supervision is needed. Often your emotional state is completely dependent on those around you. If everyone else is happy, you will be.
The good news is you may have a long time before this happens. Enjoy life and prepare for the worst. They could find some new treatment soon so you are not without hope. Definitely time for a bucket list.
Apytele@sh.itjust.works 4 months ago
Oh hi I’m a psychiatric nurse!
Most important: Pick the three people you trust most in the world, put them in order of who you want making decisions for you the most, then talk to your doctor about what paperwork you need to sign for that. Then talk to those people at length about how you want to die and what would make you feel the safest and happiest day-to-day. Think about what things you do for fun / relaxation, what kind of music you like you listen to, etc.
If you’re up to it, I also highly recommend Wellness Recovery Action Planning. It’s more designed for people who are more likely to recover, but it’ll give you a template to go off to communicate your day to day needs in a written format for your legal decision makers and healthcare professionals to make you feel safe and comfortable as you progress through these next few stages.
And I can’t stress the music enough. It’s the part of your brain that’s likely to keep working the longest. Make two playlists, one to dance / have fun to, and one to relax / sleep to.
Good luck and I really hope you’re able to find trustworthy people to make decisions for you because without them to actually carry out your wishes, literally anything else you decide on now is completely moot.
flambonkscious@sh.itjust.works 4 months ago
I’m not OP but loving your response!