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Now I know the stages of dementia - I have read the pages on AC and done other reading too but what I find really difficult to come to terms with is that Mums dementia, at times, seems unbelievably haphazard. One day she can remember quite a lot (mostly long term memory, short term not so much. The next day, or even hour, very little about the same thing. Then we have mobility - one day she can the next she can't. Then toiling some days she can some not. Incontinence bladder incontinent pretty much all the time bowel incontinent more often now but some days absolutely no bowel incontinence at all. Some days she remembers she can't remember other days she can't.

If this were a child you would say it was deliberate and I KNOW in my heart it isn't but, just sometimes, I think ..... are you playing me mother? Especially when I respond negatively - OK I know I shouldn't but I AM human and constant criticism does get to us all at some point or another ...then comes out the infamous words that I loathe beyond all others....I was only joking.

I have even started talking to the commode....The commode wants to be emptied - now she knows that - so in I go and say Hello little commode would you like me to empty you...if only she would just once say Jude could you empty the commode or Jude can I have a cup of tea. She never does she never says please and she never says thank you and even though she never will it grates.

Am I alone in feeling like this cos I sure as hell feel alone sometimes. Without you guys on here I would be long gone.

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I believe that a lot of the behavior is simply the disease. It is not a conscious decision on my Moms part to be annoying or knowingly pick at us or do things that irritate. It is a bummer. The "please" and "thank you" has gone and this would never have been her norm. But sometimes her requests sound like demands now. Good reminder Grandma1954! I'm only 7 months in to her living with us so it's easy for me to say that now. Mom has had dementia for 8 to 10 years but when my Dad was alive they took care of each other - it was early stages and she covered herself well over the years. The worst for my Mom was giving up her meds as she was/is an RN, ET. She worked with cancer patients and did amazing would care management. Hopefully we stay on track with that! She still asks why she can't take her own meds occasionally. She doesn't think she has a memory issue.
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One of the things I have done to curb frustration is I changed 2 words in my thinking.
I changed Won't to Can't
When you say He WON'T do something that implies a conscious decision on his part to not do something.
When you say he CAN'T do something that implies an inability to do something.

You can not get angry or frustrated at a 1 year old that WON'T tie their shoes because they CAN'T tie their shoes, they have not yet learned how. This is how I view my husbands ability or inability to do things. Certainly took the frustration out of many days thinking this way.
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Sendme - I like it! I talked to the companion today and she's claiming innocence - not sure I'm buying it but I at least got my point across to her to stop encouraging things that are inconsistent with hospice plans. In talking with her I think I stumbled onto my mothers master plan - she's trying to restart her obsessiveness with going to the doctor. So, I told the caregiver to redirect my mom to me when my mom starts talking about going to the doctor and for the caregiving to work on getting my moms attention on outings that don't revolve around doctor visits. I'm hoping in a short time this will pass just as the hip thing did.
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Rainmom, You could try: "Mom, the dentist refuses to see you because you don't brush your teeth." "Once you start doing that either on your own, or with help, then he will agree to see you, but not until after he gets back from vacay".

Good idea to talk to the caregiver/companion about her own expectations for your mom. I think you may be on to something.
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Thanks, cwillie. I was thinking of something along that line. Back in the fall my mother was determined to get her other hip replaced - it wasn't going to happen even though my mother insisted she was in intolerable pain. Know what? Last time I remember her mentioning her hip was in December! Tomorrow I'm gonna talk with moms previous part time caregiver whom we have hired to visit my mom once a week as a companion. I suspect this teeth issue is something the companion has put in moms head. She has a horrible habit of over stepping and can't get it through her head her job now is not what it use to be. And for a licensed CNA she can't wrap her head around hospice care for my mom. I would have terminated her a while ago but my mother adores her and this woman does things with mom I can't get my mom to do and honesty - I don't really want to do.
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Rainmom, tell her he's on vacation and that you had to book the appointment for when he returns in September.
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Not that I'm aware of. It's a private pay only place and has two docs that see some residents and are available for emergencies. My moms on hospice so she doesn't use them anyhow. But beyond that my mom has a dentist she's been going to longer than I can remember - like I said, he's made a fortune off my parents. And of course that is who mom wants to go to - won't even consider something more convenient!
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So, doesnt mom's nh have a dentist who comes in?
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My sisters! So, I see my mom last Friday and she says she wants to go to the dentist to get her teeth cleaned and that she has four fillings that have fallen out and she wants fixed. In the first place - how she came up with FOUR fillings is beyond me - she can't even see into her own mouth. Second - she refuses to brush her teeth or let anyone help her with it. By my best guess she hasn't brushed her teeth in ten months. Third - I asked mom if her teeth were giving her pain - "no" - but we gotta get her to the dentist! Fourth - the hospice nurse told me today that "it could happen any day but most likely no longer than two months. Now - it's not a money thing. But really? We're gonna haul her to the dentist and spend a fortune on her teeth (I know this dentist and he probably put his kids through college on my parents teeth) so, yea - we're gonna take a few visits, risk doing the fillings - God knows what else the dentist will recommend and once my mom hears that it will become relentless - but back to my point - so, yea - we'll do the cleaning, fix four fillings, and SHE STILL WONT BRUSH HER TEETH!!!! Arghhggg!!! Just shot me now, please?!!!
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Amen Jessie! Hang in there Love! Or don't, I just don't know anymore! Sorry!
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Amen, Jessie.
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I had a frank talk with Mom today. I told her that she needs to consider what she wants to do. I told her there was nothing physically wrong with her except her back, and that she could live for 10 more years. I asked her if she wanted to sit around for another 10 years, or what did she want to do. She said she didn't know.

Then I told her that I'd been here over 6.5 years. This was over 10% of my life donated and I needed to be getting on with my own life. She said that these things all work their way out. Oh, doh. Only if people work them out or someone dies.

Well, we will see if she thinks on it or forgets it. Anyone want to lay any bets on it? I'm hoping she'll think on it and realize it's time for her to do something different with her life besides rotting away in this old house. (Can I get an amen?)
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yep betty thats Mum ... not all of those but a lot and some others but hey what is life for except for being utterly bloody miserable!!!!!!! Thank god for this site eh?
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Yes, we all seem to have the same kind of parent. I’m been dealing with gallbladder issues, bedsores, anemia, acid reflux, swallowing, skin rashes, glaucoma, retain water, allergy, sleeping disorder, anxiety, irritating, paranoia, neuropathy, edema, incontinence, constipation, ingrown toenail, fungi issues, irritable bowel syndrome, hygiene issues, don’t want to drink water, balancing, walking issues, can’t hear, smell, see, body sensation, can’t taste food, arthritis, doesn’t want to help herself, can’t feel herself sweating, always cold, don’t know how to pace herself, picky eater, don’t want to exercise, or be active, social, sleeping disorder, use keywords, sign, read lip, a back seat driver, like to take seat belt off while I’m driving, wants to hit me if I don’t agree or follow things she want, when her friends tell her about their health issues, mom would say I have that problem too, hmmm, she doesn’t, she creates her own problems in general, not aware of health issues Diabetes 2, high blood pressure, cholesterol, over weight, can’t make up her own mind about everything in life, feel like a broken record – explain but don’t understand or forget, personal disorder, narcissistic, F.O.G., play mind trip games with 4 other siblings and myself, knows how to push all my buttons. No matter what I do for mom, she’s never satisfied, it’s a catch 22. Yet, I’m the only one that see this in mom, other siblings’ are in denial and won’t support or help, so critical, always arguing with my decisions for mom, taken me way too long to get all the paper works done, it’s a tug of war with siblings’ not on a same page, their very selfish, it’s what they want, not what mom wants, need, honor, safe, comfortable, dignity.
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Oh hell I think we all share the same mother! Jessie Belle and I know we do and now another to the clan of narcissistic parents. I can tell you it is now ON RECORD that mum plays me up and is highly demanding. The paramedics saw it for themselves and they now know she KNOWS how to fool me. Watch out for that breathless bit Mum drops her chin to her chest and bingo breathless in a heartbeat and she does know, even the extremely experienced elderly care paramedic says Mum knows how to press buttons. It is apparently something they learn throughout their lives and seemingly it does come to the fore periodically in some people, mostly related to depression and anxiety about the loss of freedoms that occur with age. Once it becomes a dependancy on you issue then any fear at all that you might be leaving them (i.e. going to the pharmacy or the supermarket or the hairdressers (huh that would be a first) then up it comes and out comes the poking. now bearing in mind this paramedic also said that anxiety can strike many many times during the course of a day it does mean we are well in the firing line. I guess it s something we have to tolerate because it sure is something we can alleviate totally although we are exploring heavier antidepressants as a possible route
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GreenJean, the part you wrote about your mother liking to pick at you got my attention. My mother seems to take pleasure at poking at me to see if she can push my buttons. It can feel like I'm in a cage and she is poking sticks at me to see if she can get me mad. Why someone should take pleasure in this, I don't know. I guess it is just a mean streak. It sounds like your mother has a little mean streak. Mine has one as wide as a LA interstate. :-(
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My Mom is 86 with VD. She is breathless after very little activity sometimes but not others. She is still nice. Although she does do little things you ask her not to and chuckles while doing them. No incontinence as of yet, a huge blessing. Sometimes she seems so clear and then poof - where are we going, I don't remember getting a new dress. We are having a friend take her to PT twice a week and some days she just trys to get out of it, I don't feel well and she'll just go back to bed after being up and dressed. Stopped wearing her hearing aids - My husband is at home during day and me in the evenings. The TV is soooo loud it is stressful. We bought wireless headphones but she doesn't like them. I asked if she would just wear them occasionally on the weekend but then she seems to pout and doesn't wear them. I don't know if we should be more demanding to keep our own sanity. Hard to know. She likes to pick at you and chuckle. I try to just let it roll of but its hard for my husband. She seems to be harder on him than me. You just never know what the day will hold.
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PS that is Mum I am talking about not me!
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I think I may be in a step down phase.
Breathless at times but not at others.
Flushed now and again but nothing to call doc out over.
Even more demanding than she was before
Showtiming to others is less apparent now although she still does it she just can't mask the dementia like she used to
Urine less odorous but hell more frequent like 12-20 times a day - total bladder incontinence occasional bowel incontinence and then again some bowel impaction (she has diverticulitis)
More moody when it comes to meal times - much more refusal to eat
Much more aggressive verbally to me but only to me so thats ok - who would care if it is only me - the doc actually said Ah ok oh hmmm well thats good then....really?
Eyesight diminishing and fluctuating a lot
Hearing not so much
Starting to dribble

Anyone else noticed any of this with VaD
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You are not alone! I My MIL has vascular dementia in the complete denial stage. Some days she's pretty good. other days or even a few hours later, she's in her own oblivious world. The other day she rolled her eyes at me and I wanted to strangle her! I am with you! Say a few curse words, have a glass of wine, come on here and vent. No judgement here!
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Yes. I agree to all what your talking about. I'm dealing with my 89 year old mother, who has vascular dementia. It's a roller coaster.
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Jude, you aren't alone. We both are probably suffering from long-term caregiver exhaustion. Our minds are still trying to make sense of other minds that no longer make sense. It can be a bit like Alice in Wonderland, where things are real but they aren't.

I tried to fit my mother into the stages of Alzheimer's, but she never fit. I finally figured out it was because she had the classic signs of vascular dementia. I don't try to fit her into the Alz stage mode anymore.

It is so hard not to get flustered and cross. The main thing I'm dealing with now is absolute confusion, but still wanting to control things. She wants me to explain something, but she can't understand or retain even a simple explanation now. So she'll ask again. Later she'll change what I said in her mind, so there is a new "truth." It is very hard to walk this twisted path.
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