Would you share your experiences…?

Hi @Sunfish47! thanks for sharing. How old is your DH? How long since diagnosis. What little things make your days better. For me, it's having my own hobbies but not forcing too much or any deadlines and making sure to keep everything slow with him and just relax into his groove for part of the day, then set him up and do my stuff in the next room part of the day.

Hi AlzWife: my DH is 84 and except for the cognitive issues, is in excellent physical health. I am 77. We were actually enjoying life & still working parttime up til 5 years ago, operating a home based business together. Previously highly intelligent, thats when DH started showing signs of cognitive impairment. I guess he was stage 3 or 4 at that point, forgetting words & getting lost driving.
Nowadays, he can’t remember most things I tell him 10 seconds later, doesnt know our daughters or grandchildren anymore (they are close by & we see them all the time), has the executive decision-making of a 3 year old, sees people in the house that aren’t there, always tells me he needs “to go home, wears the same clothes day after day unless I can get him to shower (“today is shower day, dear”), can never find his wallet (cuz he can’t remember where he hid it the night before), has aphasia that gets pretty bad as the day goes on, is still pleasant but also very anxious, shadows me constantly (which is annoying but at least I know where he is and what he’s doing), beginning urinary incontinence so has to be reminded every few hours, or before we leave the house, to use the bathroom (and I now keep a urinal in the car).
He always wants to go somewhere, anywhere, everyday - so most days we either drive to grocery store for a small food shopping or else go sit in a fast food restaurant for a snack or go walk for a bit in a nearby shopping mall.
At home he is content to watch tv: music videos or old cowboy shows like Gunsmoke, The Rifleman, etc that he remembers from his youth.
Since we are mostly home, I like to spend my free time online at my computer, and I have his computer set up right next to mine and I put on YouTube videos for him to scroll thru (except I have to do the scrolling for him). Or I put TikTok on his phone so he can watch videos (and I have to scroll those for him too).
We have 3 chickens in a small coop in the backyard and every day I give him chicken feed in a bowl to take to them. Many times he’ll scatter the chicken feed and bring me back the empty bowl and tell me they need food.
Me: “you just brought them food”.
DH: “no I didn’t.”
Me: “well here’s the empty bowl so yes you did just bring them food”.
DH: “no I didn’t. They haven’t had any food for two days.” 😂🤣

I'm new at this and have so many questions I'd spend the rest of the month - OK, so it's June 29th so only one more day - but still - to start, is anyone familiar with the P TAU 217 blood test? Reliable? What does it mean? Value = 1.4. When did you start thinking about the future with your LO in a care facility? My LO had several brain surgeries last year due to Epilepsy. The doctors put everything down to that. I always believed it was also in large part to neurodegenerative. HELP! Communicating with LO is about 20 - 30%. LO is most likely mid-stage 5

My DH has had very little in the way of diagnosis testing. The Dr who diagnosed him with "early stage dementia, probably AD" about 5 yrs ago did not think that extensive tests really made any difference in the long run and did not prescribe any. Since being here on ALZ connected, I've wished many times that I knew more about his dementia, but I think he is in stage 6. I also feel as you do that this mid stage is extending for a long time. I began noticing symptoms about 8 or 9 years ago. My DH has had no other medical/physical issues until the past few months when his O2 levels dropped below acceptable levels. He has been using O2 supplement day and night. It has caused his depression to worsen as his self esteem has taken a big hit. Now he wants to stay in bed all day. I try to get him up and interested in something (usually to no avail), but there are times when I just give up and let him lie in bed. He is independent with personal care and has no incontinence issues except with occasional diarrhea but has basically no short term memory left. I can relate to your description of the varying degree of competence. It can be quite frustrating, and yes, exhausting. There really is no timeline to rely on.