Has anyone’s every experienced this ???

I certainly understand your wondering about what is to come. The answer is not simple; each person's journey will be different and on its own timeline. Dementia is sadly, a progressive disease.

My Mother's was rather rapidly progressive over a five year period with many losses. My step-dad, while he had Alz's took a different sort of path over a much longer period. Until the very end he knew who we were, who he was, where he was; could feed himself, dress and bathe with assistance, and enjoyed company. He was not able to do much in the way of technical needs or planning ahead, etc., but he was cooperative and actually fairly capable in that modality.

What is best to do is to plan ahead for the worst and hope for the best. Always have a Plan B in mind should something change very quickly needing more assistance. know that the disease will progress and do much reading as you can to learn as much as you can; knowledge is power.

Sending warm thoughts to a very caring person who is doing his best and is learning.

J.

Good morning. More recently this has been my very question! My DW was diagnosed with MCI almost 9 years ago! I too wonder if there is the possibility that we won’t progress further. She has all the early signs: repetitive questions, can’t remember what she ate for lunch that day, can’t stand for me to be gone ( hates to be home alone), has not finished reading a book in years ( starts them over part way through), not sure of the month or season, sometimes confused as to where we are when it is an area that we’ve been in many many times, can’t follow a recipe. But dresses and bathes herself. Kind of cleans up around the house. Knows family and friends. As for driving, will drive with me or follow me in another car but I’m thinking she is about done due to her lack of confidence in her ability.

Is it possible we are in a stage where we won’t progress further? 9 years of this mild experience? Has this happened with any of you good people? This for sure is not the retirement years we planned for. She was a very independent RN with so many interests. But I will relish this time and hope it doesn’t progress to the life that so many of you have had to experience. I’ve not heard of anyone having the experience of staying in this kind of phase for so long.

Thanks, M1. I appreciate your words. This truly is an “ enjoy what you have today and live day to day “ type experience.

Every case is different and only time will tell. It's a baffling disease.

My husband was diagnosed eight years ago with FTD. Seven years before that he was given an MCI diagnosis.

A couple years before the MCI diagnosis I knew something was seriously wrong; I could FEEL it. He had some basic testing to rule some things out. At that time, at the pinacle of his highly advanced career and what would have been his highest earning potential, he was diagnosed with depression, anxiety, and work-related ptsd.

Because the doctors would not name it for so long, my husband lost five years worth of social security disability. (We had to spend a lot of our retirement savings ten years earlier than we had planned for retirement; a significant chunk of our lifetime earnings already gone.) The professionals have no idea the lifetime impact and hardship their reluctance to name dementia has on the patient and family.

I wish you a long plateau of as much ease and peace as possible. Best wishes.

Edit: I meant to add that even now, all these years since the beginning of this dementia journey, my husband with FTD does all his ADL's and is very independent and surprisingly capable. He stays home, avoids social contact, putters all day with the computer, TV, and sits in his woodshop looking at the walls or sleeping a lot. If you met him you would never know he is ill.

His decline has been very slow after a couple of initial crises. Medication has been very helpful. I notice little things showing decline every now and then, like, a little more anxiety in certain situations, a little more withdrawal, a little more confusion more often.

Thanks so much. My DW is in that place as well but wants to ignore the illness. Won’t talk about it. It breaks my heart to imagine what she is going through in her mind.

My DH has diagnosis of MCI still unclear if Alzheimer or FTD but definitely a neurodegenerative process. He has been on aricept for 3 years. His decline has been slow but steady. He first started having memory issues about 6 years ago but they were not noticeable to me. Now his word finding is daily. He does not remember family members names. He does know some names but not many. He does not recognize very many animals other than cats and dogs. He is still independent and is working although I wonder how much is going on at work that he isn’t telling me. We are a couple months away from his next round of tests to measure his decline. I do feel it is worse than a year ago. Most people don’t notice he has an issue because he is good at avoiding names and topics he doesn’t remember. I also wonder often about the timeline ahead. He also managed his own medication last year and now is unable to do that.