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@anonimouse

Hello I am a nurse forced into early retirement due to my diagnosis of early onset dementia. I am still able to care for myself drive and I keep very busy using my brain playing games, socializing with family and friends volunteering assistance to ones in need, draw, paint, refinishing furniture, sewing, rock tumbling, flower growing, yard work.. just anything and everything plus I try travel a lot . My diagnosis was initially from neuropsychologist referred to from my neurologist due to my memory loss and struggles. Work was really showing a dramatic change in thought patterns my words won’t come to me. But when I slow down and think it will come or I can brush it to the side and nobody notices. It’s worse when I get rushed or stressed it’s almost like I’m a foreign person trying to speak English but can’t think of the word. And my numbers really get affected. My husband is having a hard time accepting my problem and forces me to do a lot even though I mess up cooking and taking care of bills for example can be herendous at times. But I figure it keeps me sharper trial and error but at least I try and everyone makes mistakes right, I still fit in. Sometimes I get frustrated that I’ve been dealt this hand in life, but as the neuropsychology analyst told me when she give me the initial blow, “ITS NOT A DEATH SENTENCE. “ which at the time I thought well that’s something to say.. but now I see.. I need to and can live the best life I can and that again is all anyone can do. It’s my life sentence. My MRI Pet scan was the confirming point and then my career was demolished. Life as I knew it had to change. And it changes a little all the time, I wonder when I won’t fit in.... but until then I’m gonna keep on doing as much as I can. So yes them tests are beneficial in diagnosis sometimes.

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Replies to "Hello I am a nurse forced into early retirement due to my diagnosis of early onset..."

Hi @anonimouse Nice to see you here on Mayo Connect! Lovely photo! I am sorry to read of your diagnosis and applaud your attitude, acceptance, and continuing to work on keeping as many balls in the air as you can!

Your post reminded me of another aspect of the benefits of my wife's neuropsychological testing. The 'knowing'! Not knowing and always wondering was far harder on her and us than once we all knew what was going on medically. She always found the times of not knowing and the times of waiting on results as to be far worse and harder than dealing with the reality once she and we knew it.

As my wife's husband I did need to attune myself to listen for her to say 'no'. Early on we were always in the 'try again' mode, but as time progressed and her journey continued I learned to accept when she'd say 'no' to me about some task, chore, or job she had been doing. I would often see a very positive change in her as she could put that challenge aside and continue to be happier doing those things she was able to continue to master and continued to bring her some measure of happiness. As my wife's neuro-oncologist used to remind me often 'change is inevitable. Accepting that can be the hardest part.'

Strength, courage, and peace!

Hi @anonimouse, I add my welcome to you and appreciate your input in this discussion. Do you find neuropsychological testing stressful?

It can be really hard for a partner to accept the diagnosis. They don't want things to change. Who does, right? Do you know about Mayo Clinic HABIT program? HABIT stands for Healthy Action to Benefit Independence & Thinking®. It is a 10 day program for individuals who have received the diagnosis of MCI and a partner to learn the best skills for maintaining independence in spite of memory problems, improving self-esteem, and coping with the emotions that arise for the person and their family with the uncertainty that comes with a diagnosis of MCI. The program focuses on adjustment to the diagnosis of MCI, adaptation to cognitive and functional limitations, brain wellness education, physical and cognitive exercise, and stress/emotional management.

@tunared and @anonimouse, this may be something to look into. One of the silver linings of COVID is that the program is now offered online, so you don't have to live near or travel to Mayo Clinic to participate. You can find out more about the program and the virtual version in these posts:
- HABIT Program Overview: https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/tab/resource-5394/
- HABIT goes Virtual! https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/habit-goes-virtual/