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My mom is at the stage where she knows something is wrong. She is depressed over being forgetful and knows it’s Alzheimer’s. I hate that she knows and yet maybe it’s good because that means the disease isn’t that advanced, right? She is severely depressed anyway. Hates being old and is so frustrated. My heart hurts for her...until she says something hateful...then, not so much. Haha. Ugh.


She scored a 16 on the MMSE. Have no idea at what point people get diagnosed....are they usually worse off on the scoring?


Just wondering how many of you have loved ones who still know what’s going on? I think my mom is fine and normal until the confusion sets in...and then she’s normal..


Is it always back and forth to where you really wonder if something is wrong?

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It depends on the person, how much interest she has always taken in matters medical and health-related and scientific for example; but perhaps it might be helpful to work out a few simple ways of reminding her of what is going on.

You can't reason with a person with dementia, that's not fair, the whole point is that various brain functions are increasingly impaired. But you can use routines, simple explanations and catchwords to reassure them, and lessen their anxiety. And yours!

For example: with her vascular dementia and, later, stroke, I would literally draw my mother a picture. I do not pretend it would have passed muster with any Anatomy Professors, it was a simple and basic diagram to help explain to her, when she was fretting about it, why she could not make sense of certain things, or do other things (like stay awake, or read a clock face). I don't suppose she even took in, let alone remembered the (scant!) technical details, but just the process of figuring out what was happening kept her happy. Because it meant it "wasn't her fault," I guess.

I think the MMSE our team used was scored out of 30, and I think anything below 24 is diagnostic - but this is such a simple thing to confirm with your mother's doctors, I should just ask them to explain what your mother's results mean.

Good days, bad days is very characteristic of Alzheimer's Disease, unfortunately; but the worse news is that having Alzheimer's does not, of course, stop other things from going wrong :( If you think your mother's depression and confusion are worse, tell her doctor and ask for help - it's not necessarily just part of the process. There could be other forms of dementia or other disease going on too - uti's are a classic culprit, for example, and very easy to check for.

Your mother knows something is wrong, no point pretending there isn't. Don't avoid the subject when she brings it up, or when she's being frankly nuts. But the first thing to do is reassure, before you explain.

You are here, you will help her.
We know what is happening.
Everything will be all right.
Let's take it easy so we can work this out.

Teepa Snow is a brilliant source of information and practical strategies; and alz.org has lots of material too.

I haven't checked your profile, sorry, I will; just hoping you are not trying to do this job all on your own?
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homealways Mar 27, 2019
You can't reason with a person with dementia, that's not fair

Thank you. These words are ringing so clear to me and a good reminder that I needed tonight. Thank you.
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Sarahk60,

(((Hugs))) We want to know what stage our LO's are because we want to know what to expect. But the truth of it is, each one with Alzheimer's progresses at their own pace and not necessarily according to any chart or schedule. They have good days and bad days.

My mom is 93 with Alzheimer's and vascular dementia. At first she accepted the diagnosis of dementia. A few months later she insisted she was perfectly fine and capable of living independently. She doesn't understand why she is in memory care. At that time two neurologists said "moderate to moderately severe." Two APS caseworkers said "mid-stage." Now, 2 years later her verbal skills are pretty good. She can still "fool" casual observers. She still manages bathing, dressing, dental hygiene, and toileting reasonably well, but not finances or her own medical care. She has to be reminded to change clothing that didn't escape "oops moments" at the dinner table. She will go outside without a jacket when needed or over-dress for warm weather. She often forgets to flush. Her judgment is poor. Her short term memory is shot. She frequently forgets close family members' names, has delusions and fixations that change every few months. She is periodically incontinent of urine. Given the opportunity, she wanders.
She takes Namenda and a very low dose of Seroquel before bed to help with sleep and paranoia. I think both meds are helping her anxiety and aggression. Paranoia, not so much. Eighteen months ago she scored 16 on the MMSE. I have no idea what she would score now. If I had to stage her, I'd say roughly 5, although according to guidelines she still retains some "stage 4" but also shows some characteristics of "stage 6".
Just sharing to give you an idea of how "all over the place" some individuals are.
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We are cleaning out our mom's house. We found notes she wrote. Memory terrible. Forget to eat. Forget to take meds. She knew.

Ads she cut out for some wacky memory deficit cure.

Our mom has a Ph.D. phi beta kappa. Scored in genius level. She thought that would protect her.
No.
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I am in at the stage u are. I am told u r not to argue with them. My husband has no remorse when he hurts my feelings. I miss that. Even at the stage we’re both in we r their caregivers. He just says sorry unemotionally. He’s in denial and I go along with it. Now he has it in his mind he wants to move. I’ve talked with other people and they say the same thing. His patience is short if I try and help him. He tells me “I’m not an idiot yet”. This used to bother me I can’t imagine being him. It’s a long hard road for the caregiver and the person afflicted. This site is good for ur soul.
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My mom has mostly always known, even before her diagnosis, that her memory was going bad. Going in and out of feeling totally able to take care of herself was difficult because she would refuse help one day and want it the next. Yes, it can be back and forth a lot. But it is good that she knows something is wrong. She might accept help better.
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My aunt was also aware that something was wrong and had the wherewithal to schedule an appointment at the local geriatric/memory care clinic, where she was diagnosed with mild cognitive impairment. But she too was severely depressed over the prospect, so the doctors decided to treat the depression first (since it can impact memory, and it's easier to treat than Alzheimer's and other dementias). They prescribed Celexa, and once she started taking it (that was a bit of a battle), it made a HUGE difference. Don't get me wrong, she still has Alzheimer's, but her mood is much improved, and is more willing to engage with the rest of the world. She too goes through periods of saying there is nothing wrong with her (and she is convinced that since she was a nurse she is best able to tell when she's impaired--she's not). But the antidepressants make it much easier to help her because she is more willing to accept the help, if only to humor me.
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Dementia is a weird thing. My step father went from moderate/severe to end stage literally overnight due to a UTI. The neurologist told me that’s often how it works. Something usually relatively benign starts an irreversible downward spiral. My mother refused to ever accept his diagnosis ( claimed he had a little memory loss) which made it much more difficult for him, for her and his end of life few weeks a nightmare. I’d learn what I can and try to help her accept the illness. I think it would have been easier on my stepfather. I have a number of chronic illnesses and can say you know you are sick, it’s much more difficult if you feel like you have to “ protect” everyone else because they don’t want to accept the reality of the situation. Unfortunately you can’t change it, but helping her accept it is a gift.
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My mom is only 76. She and my dad have had issues for several years but of course they were always fine . I had to place him in a nursing home last year and she still believes he is coming home . I’ve never known officially what stage she is but she is definitely 4 and at times 5 . She’s not handling their decline well . I don’t live close and do not have good support and do not want to deal with hiring someone to ck on her . Already delt with that of no shows and she fired them . So, I moved her to an assisted living. She calls me to come get her ( she won’t remember ) It’s so hard but she is safe and has meals , her meds . She says she’s the youngest there , she could stay at home longer , she doesn’t need to be there , She’s not old like the others . She will have some great moments but the next minute confusion or not a very rational decision . At times I try to point out all the positives and other times I’m exhausted listening to her repetitive negativity and I don’t comment at all . It’s like she thinks she and her husband are in their 59’s. She can’t remember how bad his condition is or that she can’t lift a small box of cat litter. She’s been there two weeks so far but if you ask her she’ll say one night . In her good moments it can make me feel so guilty and feel I placed her there too soon . She will get a visit from a nurse practitioner once a month and it is a dementia / memory care facility so Looking forward that they document behaviors , she’s still darn good at fooling folks . During those moments she knows she has issues her eyes are so sad. I really think for our situation her being there is best . She’s getting out of her apt on her own and socializing, goes to activities. Has friends- sometimes it’s like the first time meeting them and can never remember their names and they are pretty much the same way. If she were home or with me she would sit all day and brood . Im lucky I can manage to finance her care . It is so hard and even if you aren’t close to your parent but want the best for them you just don’t know if you are making the best decision . I always remember that her condition will not get better, she can’t remember where her husband is , what his condition is like , what she just ate , short term memory very bad . she can be very spiteful , defiant , unrealible ( so thankful she let me take over finances even though accusing me of stealing everything ) she’s over animates in her reactions , sometimes She loses her filter can be a little inappropriate. At only 76 this is going to be a long , long road .
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shb1964 Mar 29, 2019
Wow, your situation sounds SO similar to mine with the exceptions that our mother is 84, my sister and I live close, but made all the same decisions you did and wrestle with "was it too soon." Given what you have described, the answer is a resounding NO. You've done the right thing and yes, it's likely the hardest thing you'll ever have to do. Our mother has been in a private home memory care place for about 2 months. Because of her "catastrophic reactions" to what precipitated her being there (severe UTI, hospitalization and rehab for broken tibia, etc.), we were told to have no contact with her (we are triggers for her bad reactions) so we didn't for about 5 weeks, to give her a chance to settle in. It gave us the reprieve we needed from having been nonresidential caretakers for over 2 years (but still wiped us both out), and she has no memory of it. We now visit together once per week (and once individually per week), and she hates it, wants to go home, wonders why she's there, can take care of herself, etc.

But we know we have made the right decision - for her and for us. She doesn't have the capacity to realize it and that is very sad but there's nothing we can do about it.

The only thing I can say is to re-read your message objectively, as though someone else wrote it. Given those circumstances, wouldn't you advise the writer to do what you have done? There is comfort to be had in knowing she's safe and fed, but it is very hard to deal with knowing she is miserable. That's what I'm having a hard time with. Maybe the passing of time will help you both. She may settle in, and you will come to good terms with your decision. For what it's worth, based on your description, it was the only decision you could have made.
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Please get in touch with the Dementia Action Alliance, which among other things highlights in their activities (as speakers, guides) persons diagnosed with dementia. As they say, we are not dying with dementia, we are LIVING with dementia--and as persons diagnosed with dementia they are showing how there is life after this diagnosis. Please check out their website.
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It is sad to see a person realize they are ill with no hope of recovery. But I can tell you the reverse is equally unpleasant. My now 84 y.o. mother had cognitive impairment issues (not officially diagnosed but it wasn't hard to tell) before breaking her hip 2.5 years ago. The anesthesia sent her into a whole other world. Mom is a nonbeliever in Western medicine, wasn't on any pills or meds at the time of the break - and refuses them now. She has a condition known as anosognosia - the incapability to realize anything is wrong with her. She also has obsessive compulsive personality disorder - not the same as OCD, which can be medicated. In fact, the OCPD makes her resistant to some drugs that could help with her anxiety and agitation. I'm majorly P.O.d because the memory care group home we moved her into this January (precipitated by a broken leg bone and a severe UTI which triggered a further downward spiral) won't give her the two meds she is currently prescribed (Synthroid - thyroid issues [she also has Hashimoto's disease but is asymptomatic] and Risperidone to take the edge off). The home's aide's say one is for thyroid, which she will sometimes take, and they say the other is for her memory, which is the one thing will admit to. "It's not what it used to be," she says. No kidding.

Anyway, she never had a regular doc after I was born (I'm 54 now), so the one she got while she was in SNF after the hip break became her doc. He said his MMSE assessment when he met her after her hip break in Oct 2016 was 21. This past January with the bone break, he said he was shocked to assess her at 13. I do not believe it should be that low: she recognizes all her 3 kids, can still carry on a very in-the-moment conversation and those that go far back into her history, doesn't wander, isn't incontinent, but she does refuse to take showers (oddly, that's gotten better since being in MC since January) or change clothes. Says she has already done those things when we know she hasn't.

The bottom line is that stages and MMSE scores are only gauges to go by, and each victim's journey is different regardless of the numbers. You have to deal with what's in front of you, which sucks, and I feel for you. Our mother was so frantic from going to MC that I suspect she further decompensated and because she was throwing things across her private room and refusing to let aides enter, they advised us sibs to stay away for a while to let her "settle." We have also been told she may never settle or accept this. I fear that will be our lot. Mom is very canny and cunning and can put on a show for the unsuspecting. In fact, during this last hospitalization, some doc came in to talk to her. She put on her show, then on his way out, he tapped my shoulder to follow him. He said, "What's the real story?" So canny docs can outwit my mother - but they have to want to. I've seen others get lazy and buy her shenanigans.

But she is completely bewildered at why she's in "this place" and why her furniture is there and why she can't go home. No clue as to why "a little forgetfulness" is forcing her to be out of her home - which was very dirty, overcrowded, wouldn't pass any kind of safety inspection. We knew she couldn't live alone anymore. So that's the reverse of "knowing." Neither is an ideal state, and both are fraught with problems. On the whole, I'd rather Mom realized...I think.
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