Moderate to late stage dementia symptoms. Any advice?

Everyone has different symptoms with late stage dementia (moderate, too), and those symptoms are not linear. In other words, they come & go. What mom is experiencing today, symptom wise, may change entirely tomorrow. Today her sentences may not make sense; tomorrow she may be as lucid as she was 5 years ago.

My mother had very advanced dementia and still fed herself. She could still button her blouse, no problem. She hobbled her wheelchair over to the toilet all day long and did her business there, cleaned herself, fell off the toilet lots of times, but by God, she 'went to the bathroom herself.' Then she'd start carrying on about 'my mother is hiding from me and I can't find her, what am I going to do???' Her mother died 37 years prior.

The one thing you can bank on with dementia is that you don't know WHAT to expect from your mother from one hour to the next.

People who are on death's door have been known to have a rally. To start speaking in a totally lucid fashion after being totally mute for years. To ask for a large meal after not eating food for weeks on end. To laugh and joke around, too, after not being out of bed for ages.

Nothing is normal about dementia, so you can't go by the book on anything. You can read until you're blue in the face, and still you won't find your mother's behavior in any of the pages you look at. Dementia is as individual as one's own thumbprint, as our dear Alva likes to say about disease in general. And she's right.

My mother was up and about schmoozing with the other residents in MC right up until the minute she felt tired and went into her bed. Then she went into a semi-comatose state and never got out of that bed again. She died one week later, having never woken up fully again. She'd been on a steady decline for a full year, really, but judging on how she was acting, I thought she'd live at least another year or two. I was wrong.

Dementia fools everybody all the time.

All you know is that you know nothing. And that's the hardest thing of all; the helplessness you feel.

Best of luck to you as you try to navigate the rockiest road on earth.

I was baffled by "stages" and other terms to describe "where" my Husband was in the dementia journey. He was non verbal when he should have been able to talk. He was eating by himself when according to "stages" he shouldn't have. And I could go on.
Dementia and the damage it does is different for each person.
Rejoyce in what she can still do, mourn what she has lost, accept that she will continue to lose bits and pieces and be prepared to help her manage as best as you and she can.
I learned a LOT caring for my Husband. Do I wish that things had been different, you bet! But I am grateful for what I did have and I was able to care for him.

My mother has never fit the description of a single “stage”. By most definitions she’d be late stage or stage 7, as she has lost almost all psychomotor skills. She has difficulty swallowing. Interestingly, she is still very articulate and will talk your ear off. She’ll tell me how she’s tired because she spent all day yesterday at the fair with someone dead for decades. Rich, detailed stories. Not sure if she even knows her own name anymore.

My mother is similar. She's 95 with mid-stage dementia and is able to walk with a walker. Her mental status swings from total delusions to mild confusion. She still gets physical therapy each week.

Her physical therapist told me that most of her patients who are similar to my mother cognitively are in a wheelchair, but my mother has no co-morbidities.

The only medication she takes is a thyroid pill. Her vitals are normal and her heart is strong. She has a very strong grip.

She has the gusto to constantly yell my name - all day long - hundreds of times a day. Yelling like that exhausts me.

So, my mother is also not following the spectrum of dementia in my opinion.

My father is exactly the same:
long and short term memory are severely diminished.
he doesn't remember if he did something just a few seconds ago (like checking his banking account, one of his obsessions).
however, except for physical limitations, he is able to dress and clean himself, to feed himself (yet he puts tantrums because he doesn't like eating).
on the latter years, he was doing translations and he is still able to translate but he doesn't remember how to type.
all this has had a severe decline in just a few weeks.
I wish you a gentle relationship with your mom.
I have to acknowledge that, since my father is still able to hold a conversation, his dementia comes out as stubbornness or just plain nonsense and I tend to loose my patience quite easily.

Just echoing that the stages are not set in stone and are just what I consider guidelines to categorize people into the stages so we kind of know what to expect. But it's different for every case and different from moment to moment with our LOs that have dementia. It's a roller coaster rider. I'm always surprised when my mom has something really lucid to say. And then asks me 3 times in a row which caregiver is coming and at what time. It's baffling but it is what it is. I guess we can't get hung up on the things that don't make sense or don't fit the "stages".

Good luck.

Dementia affects everyone differently. Be happy that your Mom can still do many things for herself! Take it day by day and let her do anything that she can do for herself, for as long as possible. It sounds like she should not be leaving the house without someone with her. Have a plan in case her care gets to the point where you cannot do it alone. Her mental abilities and physical health may decline as she ages. My mother eventually "forgot" how to walk and eat and she had to be fed. It took 2 people to transfer her to a wheel chair if she was not assisting. Your basic options if this happens are having in-home caregivers to assist, or placing your mother ina memory care facility. Much will depend on her finances. Get connected with a local social worker to discuss her options. Much depends on her finances. Hopefully all of her paperwork is in order and she has set up powers of attorney for medical and financial matters, has a living will with her advance medical directives so that you know her wishes, and has a will, if she has assets. If she is no longer able to sign legal papers, it's too late to do this, and you should ask the social worker about getting guardianship. All the best to you both.

It is a fluid situation and decline can be slow or fast................you never know what you're gonna get until it runs over you. Prepare for the future before it is on your doorstep.

Ms, do you know what kind of dementia your mom has?

There's a saying, "when you know one person with dementia, you know ONE person with dementia.

My mom had Vascular Dementia with aphasia from a stroke. Her speech and language skills were shot, but she could assist with the mechanics of dressing, just not the planning. She knew who we all were right up to the end.

A friend's mom, with Alzheimers, confused her daughters, granddaughter and great-grandchildren, didn't recall if she'd been married or had kids, but her speech was clear to the end.

I hope others will post soon with more insight. (((Hugs)))).

Are you sure she is suffering from dementia? Blood sugar irregularities can cause weight loss and confusion too as can thyroid issues and some B vitamin deficiencies. Has she had a physical with blood work recently?

My mother had MCI with some memory issues (most short term but some long term as short term memories were not "written" into long term) but the neurologist stated she did not have dementia (problems thinking). Mom remained reasonable in contrast to my father with vascular dementia who was very difficult to cope with at times. For example, Mom stopped driving when asked with a reason. Dad claimed he could drive as well as ever even after he had rear ended a car and gotten lost.