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mndireland

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Loved one DX
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10/2007
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IE
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Does anyone else completely forget something that just happened, or worse, think that something happened that actually hasnt? Is it dementia?

Im wondering as my mam has been confused many times in the last 16months since diagnosed, but it seems to be getting worse, so much so that she thinks Im giving her more tables as I want rid of her! Its quite upsetting.
Sometimes she says things like yesterday we went to the shops, and it might have been 3days ago, she contradicted my aunt so much last week about her retirement party was last month but it was last June, my aunt said she got soo angry with her she ended up agreeing. But last night when I was giving her her medication she told me that I already gave it to her, Which I hadnt. She was shouting at me calling me stupid (this is not a big deal we do shout at each other in a parent child way ha) But when I told my sister on the phone last night, she said oh I forgot to say, she had told her friend last week that we were giving her more tablets, her friend asked her why would we do that, and she said because they want to get rid of me earlier. I felt so guilty then that i had forced her to take them, she must have been convinced in bed last night that I was giving her a double dose!

During the day yesterday I had rang her doctor as her arms were particularly sore, and I asked was there anything more they could give her, my mum turned to her friend and said she is always on to that doctor getting me more drugs, I thought nothing of it, and just said, Why would you suffer in pain when the docs can get you something for it, of course im going to ring them about the pain to get you heavier drugs. Now Im thinking, Oh My God, she thinks Im trying to kill her! I cant believe in her right mind she would think it, but is this connected to the disease?
I spoke to her this morning and I said do you stil think I gave you twice the dose last night, and she said yes, I said why would I do that, and she said you must have forgot but I remember taking them. She didnt sleep all night and was up every hour, I think she was afraid to fall into a deep sleep!
Whats next?
 

sral

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Learn about ALS
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CA
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I've never heard of this in ALS or PLS
 

olly

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hi, ftd can effect some with mnd.
with what you describe i think you really should report this to her neuro and get her checked,she may need a ct or mri.
pls or als is bad enough when it robs you of your body,but your mind as well is just too cruel.
i do have cognitive problems like forgetfullness and concentration.
my son has to remind me or i have to write down things i need to remember or do.
i can only concentrate on one thing at a time,can not multi task.
please get an appointment for your mum asap.
 

mndireland

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Messages
123
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Loved one DX
Diagnosis
10/2007
Country
IE
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I spoke to the nurse and she said this is part of the disease. They only discovered it in the last couple of years and its not all that common and not with everyone. Its more that she just gets things mixed up, what day, week, month it is etc. When she was at her friends last week thinks it was yesterday. Its getting worse, and she thinks people are robbing her money, and somebody will get into the house etc. Latest is the medication. I got a little gadget in the chemist, days of the week and you put the pills in, so she can watch what days shes taken what, seems to be working so far!
 

Marjorie R. Wilcox

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Diagnosis
10/2007
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US
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New York
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Richmondville
I do believe there is something going on in the mind with the ALS. I experience it with Rick to some extent. It isn't like dementia, or accusations, or fret, like you describe, but there are definite changes in his memory or thought processes.

He always empties the dishwasher for me. The other morning he thought he did... told me he did, and it wasn't emptied... in fact dirty dishes had been added to the clean ones still in there. He insisted I was mistaken, and came into the kitchen to see for himself. He then felt so humiliated with the discovery, as he was the one who added the dirty ones. I try not to have these confrontations with him. I try to let them pass over without pointing them out.

A few months ago there was another significant happening. Rick just LOVES cats. We went for an appointment at the VA hospital, and as we walked down a hall we saw many pictures of cats on the wall. We paused and studied every one, before we went on down that hall. A week later I mentioned those pictures to him, and he denied ever seeing any such pictures................ Another 3 weeks later we had another appointment at the VA. I figured if I showed him the pics again he would remember them. He saw them for the first time the second time. He remembers them now because he is determined to remember them.

As I said before, I ignore his forgetfulness as much as I can. If it isn't important, I don't point it out. He can watch a tv program today.... see it again all new next week. It doesn't matter a hill of beans.

I think he isn't getting enough oxygen. I have brought it up with his neuro, but they pass it off because he can answer who the president is etc. Rick is treasurer for the local Elk's Lodge, and is working part- time preparing corporate income tax returns. He doesn't miss a nickel then, or forget how to do his work. That's what matters for now.

I would say your Pals might need a change in meds or needs a med added. Rick isn't on any. HAPPY DAY TO ALL..
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
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Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
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Dublin
HI Majorie, my mum was like your husband in the beginning and gradually over time it has gotten worse. To the extent now of getting angry with it. Its not that I do point out the forgetfulness, but I need her to take her meds so I had to disagree with her over them. We now have a little container with days and times on and its working so far.
I remember when my mum was in hospital last October, she was really confused about everything, it was very scary and it was from the lack of oxygen. She had told us that the nurses had tied her hands together and all sorts. Scary....

We do go along with things, and I have to watch re-runs of the same episodes all day sometimes, but we just get on with it!
Its more the anger and frustration that she has that is scary now. I used to say that I wouldnt mind her losing her mind a little, as then she might not know just how sick she is, but now I think not. I want her to remain the same person, thats a selfish thought I know!

One day at a time I think.......
 

Marjorie R. Wilcox

Senior member
Joined
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10/2007
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mndireland... Oh boy, I understand what you're saying... and I didn't mean to hint that you might not be showing tolerance. I just meant that I have to a lot. I guess I will likely be in your boat someday, huh?

It's funny how Rick can be as sharp as a tack about some things, and dull minded about others.

I'm glad the compartmented meds helps you show her what is taken and what is not. You have to be ingenious and use some psychology at times, I think.

Most people, like our fellow church members, think that Rick is fine. They don't know of the nighttime and morning symptoms and the lack of balance and clonus going on inside his shoes. More things are becoming obvious though, every few months. We are in this together, no matter what.
 

mndireland

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Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
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Ireland
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Dublin
I know its amazing how much people say to me, wow your mum looks great, she's doing well, And part of me thinks yea she is, but they dont see it all.
The hospice have told me that they have been watching her confusion and thinks shes fine, they ask her questions etc, and say she knows whats going on, but its not all the time? Sometimes she can be great, and then she just gets confused. Its just another thing to get used too.... on top of all the rest. I suppose on just reading up on this disease it says that it doesnt affect the brain, and so I just never expected this......

Anyway the good days far outweight the bad so keep them coming..:)
 

rocmg

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PALS
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hi ladies... thought i'd weigh in with this little nugget of information --- it's from some kind of medical journal that i could only get limited access to. apparently studies suggest that cognitive functions may be affected when the patient has bulbar-onset.

mndireland -- i'm glad you said that you've changed your mind about your mum not realizing exactly how sick she is. since we're now living under this dreary MND cloud, i had wished up until now that my mum had something else, something where she would not be aware of what might occur as her condition progresses. i always want her to be the same person she is today, right now. i'm praying for a cure.

"A subgroup analysis revealed that bulbar–onset ALS patients performed consistently poorer in many cognitive tests than spinal-onset ones with special reference to verbal and non–verbal fluency and interference control. This subgroup difference persisted or even increased throughout follow–up. We conclude that there is a fronto–temporal pattern of cognitive dysfunction in ALS expressing itself early in the course of the disease and mainly with bulbar forms. The cognitive deficits do not progress in synchrony with motor decline, but distinctly more slowly."
 

mndireland

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Joined
May 17, 2008
Messages
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Loved one DX
Diagnosis
10/2007
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IE
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Ireland
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Thats interesting isnt it! I knew that it had some effect on the brain even though most websites say that it doesnt......
Sometimes she knows exactly whats going on,birthdays and anniversarys et and then the simple things like remember conversations or tv programmes etc she forgets.

One day there will be a cure, here's hoping!
 

Felicia38

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CALS
Country
US
State
Alabama
City
Phenix City
My husband forgets stuff too! He hasn't had a final diagnosis yet, he is getting a biopsy done friday morning, and maybe then we will know what is going on. He forgets simple stuff, and wants to argue with me about it. I just let him think what he wants to because I don't want to upset him, he is already stressed enough.
 
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