When they know something is wrong...

Sarahk60
Horrible disease.My 93 year old Dad recently diagnosed with vascular dementia. He is in denial and despite having a stroke 2 months ago which ended up with the diagnosis ,he says he did not have a stroke.
I no longer argue or disagree no point. Scan shows he has quite severe brain damage from previous strokes and mini strokes.
Some days alert other days very confused and hallucinations. I don't think you ever come to terms completely. I deal with it reasonably well for a few weeks then you have a day you don't. Depends how you feel too. Sometimes deal with it better than others. He's been unwell for about a week recently. Even though he's sitting up now and looks better physically his mind is worse. Tells me he's free and been discharged and getting a lift back to childhood home. For some reason this really upsets me. Will be ok in a few days. We have to try to stay strong and not think too deeply about how sad it all is. This forum fabulous for support. Nobody minds us letting off steam.

My SIL had Alzhemimer's, but she keeps forgetting that she has it. Just an example for you...

Mine is right where yours is. Except she doesn't want to be diagnosed. She knows enough to know that something is wrong, but doesn't want to admit what it is. And, like yours, she is depressed and frustrated. But sometimes, she seems almost normal. It's so confusing.
We are not alone. There are wonderful people here who understand.

You say she scored 16 but out of what? - my mom was 13 out of 25 with moderate to severe dementia so pay attention to full score as there is different tests

I hear you! Same situation with my Mom...realizing and stating that she’s old, useless, “half here”...then flipping to being more “normal” or completely childlike and docile or like a terrible two only in a large body!

Viewing her like a multiple personality helps because you can have a different strategy for each.

Compassion and empathy helps the most as it can be awfully lonely for her otherwise. Knowing we will all grow old and thinking how that might feel...the loss of ability, the sense of helplessness, the confusion and embarrassment, impending sense of death or, worse, total mind cloud...who wouldn’t be depressed?!

Focus on telling her how much she is loved and how she is being cared for best as you can. Appreciate all she has done for her family, how hard she has worked, and now she can relax and enjoy the leisure of being cared for.

Hugs and holding hands and enjoying nature, people watching, joking and laughter are good medicine for you both.

Keep an Eye on Mom..This condition Grows Worse where she will No longer be able to Stay Alone at Home.

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.

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.

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.

Everyone is different but my experience is that it's back and forth almost daily. I never know what to expect when I go to see my Mom. On a good day, she's almost back to herself - on a bad day, it's hard to hold a conversation. She is especially confused if she is sick.

Regarding the MMSE, this is from the Alzheimer's site:

The maximum MMSE score is 30 points. A score of 20 to 24 suggests mild dementia, 13 to 20 suggests moderate dementia, and less than 12 indicates severe dementia. On average, the MMSE score of a person with Alzheimer's declines about two to four points each year.

Usually this test is given just so the doctor has an idea whether there is something going on that should be investigated further. There are other, more comprehensive tests, that are used to try and diagnose the type of dementia.

Best to you, this is a difficult and rough road for everyone.

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.

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 .

That’s just the question I have. This has happened to my husband quickly amid two close surgeries and much pain. I realize I must get him to a geriatric Dr to be evaluated and followed. I have been overwhelmed with
all of this deluge of changes.

This is a very good question!

In the last two years I have wonder the samething. My mother being very controlling has just recently (this past year) has given up of trying to control everything. She has made a mess with her finances and handed it over to me, which tells me that she knows something is wrong. Although she can bath, use the bathroom, and cook basic things like eggs, soup and even a pork chop or chicken breast. But she forgets the small details of things. Like putting seasons on the chicken or how to load the dishwasher. I don't think she even knows how to make her pototoe salad anymore. But she can still sew on a good day.
Some days I can have a good conversation with her and others--not so much.

So yes, I have seen where she is back and forth. Some days she is here and others she not! This disease is definitely not one size fits all!

I think what you are experiencing is pretty normal all things being considered!

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.

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.

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.

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.

No, not all alone. Thank you. Yes, I’m wanting to check out teepa snow thanks!

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?