Dementia: Hi Has anyone experienced PSP... - PSP Association

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Dementia

Pippalina profile image
14 Replies

Hi

Has anyone experienced PSP related dementia? I had a foul day with E .he hates me and says he is frightened I will hit him.He wanted to leave and go to his sister in Kent,230 miles away. Sometimes he is not lucid and gets angry when I cannot understand even when his speech is not slurred. After half an hour or so he is back to normal and says he keeps saying the opposite to what comes out of his mouth and he is sorry and says he loves me.Has anyone had symptoms like this with PSPA or is this going to be in addition to the other cruel condition.Thanks Rxx

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Pippalina profile image
Pippalina
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14 Replies
Heady profile image
Heady

Hi Pippalina,

Sorry I don't know the answer. It must be very very hard to deal with. I can fully understand, when he is saying that the opposite is coming out of his mouth.

I guess it probably is some form of dementia, whether it's PSP related, you need to ask your doctor! I know I live in dread of S getting dementia and asking for his ex wife! Don't know if I will be able to cope with that!!!

As to how you can cope - well I suppose it's patience and love. You could try replying as if he is saying the opposite to what is coming out. I.e. When he says he hates you, you could reply I love you too. It will be a guessing game, but the fact he can talk about it later, try and get some form of interpretation out of him, so you can try and understand what he is trying to tell you, when he is in one of these phases!

Lots of love

Heady

Heady profile image
Heady

Hi Pippalina,

Sorry I don't know the answer. It must be very very hard to deal with. I can fully understand, when he is saying that the opposite is coming out of his mouth.

I guess it probably is some form of dementia, whether it's PSP related, you need to ask your doctor! I know I live in dread of S getting dementia and asking for his ex wife! Don't know if I will be able to cope with that!!!

As to how you can cope - well I suppose it's patience and love. You could try replying as if he is saying the opposite to what is coming out. I.e. When he says he hates you, you could reply I love you too. It will be a guessing game, but the fact he can talk about it later, try and get some form of interpretation out of him, so you can try and understand what he is trying to tell you, when he is in one of these phases!

Lots of love

Heady

dorothy-thompson profile image
dorothy-thompson

Dear Pippalina

During the last few months of my husbands life he frequently had episodes of very difficult and challenging behaviour. He was seen by a pyscogeriatrician who said that my husband probably had frontal lobal dementia on top of PSP and prescribed an anti-depressant. This had no real affect on his behaviour, however he did get more calm as the months went on, just as the consultant predicted.

The one good about it though was that I was able at long last to understand more about PSP from the consultant than any other medic I had seen during the past 8 years, it helped me a lot.

kind regards

Dorothy T

Hi R

my husband also has dementia which the neurologist says is an additional disorder going along in tandem with PSP. His frontal lobes are affected and his short term memory is failing rapidly. During the night he can be most irrational, his speech is garbled and he is difficult to settle. I never shout at him because there is absolutely no point, but sometimes he tells me I am scary which is most upsetting. Fortunately, he is a sweet natured man in general, which makes the crazy times easier to bear, and daylight seems to restore the order of things.

Regards

Lois

Pippalina profile image
Pippalina in reply to

Hi Lois

Thanks for your reply. Like you my husband is a mild mannered person and sometimes has a complete personality change.He told me that he was frightened of me and that I might hit him which is very hurtful as I pride myself in being quite a patient and calm person.Now I know that others are experiencing similar symptoms it gives me strength to cope.Thanks again.R

wifemo profile image
wifemo in reply to

Hi R,

Two immediate thoughts - is it the dark that is the problem? (Could be solved with nightlights.)

Or even laying down flat? (More pillows?) Tony's Dad at 95 used to say he felt dizzy when he lay down.

I realise how lucky we were that Tony didn't develop these awful symptoms. The only time he was aggressive was when he was put on the wrong medication.

Best of luck,

Mo

littlesupermum profile image
littlesupermum

Hi my mum has cbd and has severe cognitive problems. Poor memory she gets lost in her own house etc in last few months has become very paranoid. Thinking dad having affairs and spiteful up wandering at night. We spoke to psychiatric drs and now she's on meds (anti psychotics) they seem to help and haven't worsened other symptoms. Mum's also on antidepressants. After she comes out of an episode she just sits and cries saying she's be better off dead. I HATE THIS DISEASE

LynnO profile image
LynnO

Hi R,

My husband too, has bouts of dementia with PSP (his neuro also said he might have CBD in addition with the PSP.) I took care of my grandma with Alzheimer's, and it is a different sort of dementia from that. Although he can be VERY paranoid sometimes. He'll get angry thinking I'm checking on a nursing home for him (which I never have) for example. He has also told people that I've pushed him into our pond. (which I never have either!!) He'll say things that don't make sense, and blame me for things missing. After a while, he "goes back to normal." He also sometimes has short term memory problems, like in the afternoon, not remembering what we did in the morning. I know it's very frustrating for him. He was on an antidepressant which did nothing for this, and he refuses to take any medication on a daily bases. I have, so far, found nothing to help this symptom, other than try on my part to remain calm and give him space. certainly not always easy for me!! I would check with your dr. Maybe like Dorothy's husband, something might help E.

Springm profile image
Springm

Hi R

My husband's first signs of this disease started with behaviour/personality change. His sweet gentle nature turned into an argumentative and oppositional person. He was always very charming and talkative --slowly this began to change. He became awkward socially and very quiet. He lost much of his ability to problem solve. I couldn't understand at the time what was happening. We thought depression which he showed no signs of ever before. Then balance/falling (that was early), speech, eyes began to show up and we were well into this disease before anyone twigged that it was PSP. In fact, when I look back , I realize things started 10 years ago. PSP for us has only been diagnosed for the last 4-5 years. Mild dementia in my understanding is a factor in this disease. From what I have read and all the postings on this website, everyone seems to have a different degree of these common symptoms.

It's tough some days coping!

All the best!!

Pippalina profile image
Pippalina in reply to Springm

Hi Springm

Thanks for your reply lots of what you say applies so I will have to learn to live with this aspect of the illness. R.

MoragR profile image
MoragR

My father definitely has pretty severe dementia symptoms as well as PSP. I don't know whether this is part of the PSP or a separate condition. I frequently read on this site of people who are lucid to the end but that is not our experience. My father only remembers for about 10 minutes now, often doesn't recognise himself or anyone in photos, though he occasionally recognises his parents and his dog from his teenage years. Language is very limited and often can't be understood but he is always polite and usually co-operative with the staff at his care home. My heart goes out to all of you who are looking after loved ones yourselves.

Peter3 profile image
Peter3

Hi

My husband too started PSP with personality changes. He walked out of the house several times "never to return" but he would'nt go far before coming back. The arguments according him were my fault and we didn't need to discuss anything any more because we had been married a long time. His words.

Before the diagnosis of PSP he had some psychological test perform which indicated a degree of frontal lobe dementia and impulsive behaviour.

My husband frequently answers the opposite of what he wants. We have developed a system of asking the same question twice and then double checking the answer with thumbs up or down. Sadly even this is becoming difficult as he now has very limited finger movement.

Hope this helps

Best wishes

Peter3.

jillannf6 profile image
jillannf6 in reply to Peter3

HI PE TER3

SO SORRY HTAT YORU HUSBAND IS WORSE AND CANNOT DO THE THUMBS UP RO DOWN V EASILY

I DO THE THUMBS UP A LOT HWEN PEOPLE ASK ME HWO I AM AND I SAY `'GOOD"

TO THEM AS HTEY CNANOT HEAR ME V WELL AT ALL ESP IN A ROOM IWTH A FEW / LOT OF PEOPLE

PLZ STAY IN TOUCH

LOL JILL

AND HUG SAND XXX TO YOU AND YORU HUSBAND

dcamacho53 profile image
dcamacho53

Yes i am experienceing similar symthoms with my husband who is 6 yrs with Psp he can't talk but he sure does hate my and the majority of the time he sees me he cries with such anger and such a terrified look in his eyes. He answers yes and no to questions by barely nodding his head. Dr said he is having bo y ts of dementia and hullucinations as he thinks he hears noises at night and early in the morning but thinking bad thoughts of me with those noises he's hearing. Very difficult to go through. Best to u with what your going through.

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