Has anyone’s every experienced this ???

charley0419

im curious if anyone has an upside to this progression, and what I mean is my DW was diagnosed last year with mild Alzheimer’s, she take complete care of her self in all ways , gets confused a lot repeating questions like that no driving can be left alone. Question… anyone ever stay in one stage till end ? I guess I mean does it ever not get worse

charley0419

You know what’s hard for me is that I know and heard from many people who have known or lived with this, but I don’t think you can really wrap your head around this illness unless you know someone yourself from when they were fine to decline. It’s hard for me to realize this women I know over 56 my forget me.

JDancer

It's a very painful process, I'm sorry you're experiencing it. I would expect it to get worse.

Jo C.

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.

michiganpat

Charley, I also wonder the same thing and my husband is 6 years in with FTD. He is slowly progressing and I often wonder/hope he will stay where he is. My MIL, sister and brother all had/have some type of dementia and they all progressed. My head knows but my heart still hopes. I guess hope is eternal.

Windsock

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.

M1

Hi windsock. If you read about mild cognitive impairment, part of the definition is that a certain percentage of people will not progress. From the sound of it, you may be one of those. Part of the problem however is that the term gets used very loosely. Many medical professionals shy away from diagnosing dementia early on, my personal theory is that this is a combination of not wanting to be the messenger of bad news, and true medical uncertainty because a lot of folks decline formal testing. But from the sound of it, after nine years your wife might in fact be stable. Unfortunately only time will tell.

Windsock

https://alzconnected.org/discussion/comment/190349#Comment_190349

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

trottingalong

Windsock, my DH is where your DW is. I often ask the same question about progression. My DH worries about it as well. He’s quite aware of his short term memory loss and more noticeably, his comprehension skills are sliding. We both have noticed a change in the past 6 months with increased cognition problems. He recognizes family, has a quick wit and a sharp sense of humor. It’s been a very slow progression up to now, and I continue to hope he doesn’t progress more, but deep down I know he will. I just don’t know when, but I do enjoy every moment I have with him.

storycrafter

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.

charley0419

https://alzconnected.org/discussion/comment/190342#Comment_190342

Your experience sounds so much like mine. Keep in touch ..

charley0419

https://alzconnected.org/discussion/comment/190342#Comment_190342

Is she on meds ? And if so what??

Windsock

https://alzconnected.org/discussion/comment/190415#Comment_190415

Will do.

Windsock

https://alzconnected.org/discussion/comment/190367#Comment_190367

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.

Bluebird

I’m glad you asked this question. My husband has Alzheimer’s. He was diagnosed 18 months ago but has had symptoms for 6-7 years. He has almost no short term memory but otherwise is for the most part normal. He has been to the memory clinic 3 times and each time tests slightly better than the previous visit. Pretty much he’s had no progression. I keep wondering if there are other PWD who don’t seem to progress.

Lgb35

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.

charley0419

https://alzconnected.org/discussion/comment/190342#Comment_190342

Yours sounds just like mine. My wife diagnosed 14 months ago by neurologist. No driving. But has anosognosia forsure , thought denial but more then that. She’s 77. Yesterday I found her a little more confused then usual, but we did go to 2 doctors and kept asking what each one for. Hate this illness!! Keep in touch I’m in NJ