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Help getting a diagnosis

Blacktabbycat

New member
Jan 15, 2022
7
0
Hi I'm after a bit of advice really on my dad's behalf. We strongly suspect my mum has dementia. She has been to the GP and then onto seeing a neurologist - she had an MRI scan done and diagnosed with "water on the brain" (sorry I can't remember the medical term for it). She had a lumber puncture done and when they last saw the consultant he said the last option was to have a shunt put in which she absolutely refuses to have done which I can't really blame her for to be totally honest. My dad asked if there was a possibility it could be anything else ie dementia and the consultant said that he didn't think it could be anything else. We are now at a loss as to what to do next - I've said he needs go to back to the GP and ask for a second opinion, she's totally changed from what she used to be like - memory problems, mobility problems, irrational behaviour and volatility - she can flip out at the slightest thing. My dad is doing a lot of the cooking and cleaning now but I'm worried about him too as he's really struggling with her behaviour -saying it's grinding him down and that he feels trapped. Both of them are retired and have no other interests outside the home (he enjoyed cycling and they both used to go walking which because of her mobility they can't do any more and with the cycling mum has managed to stop him from doing that) . I've done the AD 8 questionnaire and she ticks all the boxes except for maybe one. Help!!!! I'm sorry it's so long but I'm worried about both of them - I have a sister and brother and we all agree that there's something not right.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,726
0
Nottinghamshire
Hi @Blacktabbycat and a warm welcome to Dementia Talking Point. I wonder if the doctors suspect normal-pressure-hydrocephalus? Did anyone go to the appointments as sometimes people don't always take in what the doctors have actually said to a patient. Before we twigged that my mum was heading towards dementia she would go to appointments and then just focus on one or two often irrelevant points the doctor had said rather than the bigger picture.
I suggest that someone maybe you or a sibling goes with her to the GP to find out exactly what was said and what the options are. In the meantime have things such as Lasting Power of Attorney been sorted out?
 

Blacktabbycat

New member
Jan 15, 2022
7
0
Hi thank you for the welcome and reply - my dad has been to all appointments with her as she can never remember what has been said, they have had a letter back from the consultant stating the above - I have suggested that my dad go back to the gp to discuss this letter as basically they have said that other than having the shunt done there is nothing else they can do?
 

Eogz

Registered User
Sep 9, 2021
56
0
Hi,

Normal pressure hydrocepalus is managed with a shunt.
It's not invasive, like brain surgery and any extra fluid would go into your Mum's stomach.
The shunt can last for a long time.
I knew someone who had a shunt and it really made the difference, all this dementia like symptoms immediately improved or got better.
It would be worth going and having a frank discussion with the GP and your mum to see about the procedure. If she has the capacity to decide, it is her choice of course.
But it may well be worth making sure she is aware of the benefits of the op.
 

canary

Registered User
Feb 25, 2014
18,162
0
South coast
Hello @Blacktabbycat
Normal Pressure Hydrocephalus is one of those conditions that mimics dementia.
What is happening is that the there is too much brain fluid (hence why it is often known as "water on the brain") and this extra fluid is squashing the brain and damaging/destroying the brain cells. The only way that it can be managed is by reducing the amount of fluid - hence the recommendation of a shunt which will constantly remove the extra fluid from the brain. If the fluid can be kept under control then it will actually stop further damage and there may be improvement as brain cells which have been damaged, but not destroyed, may recover.
It is definitely worth doing.
 

Blacktabbycat

New member
Jan 15, 2022
7
0
Hi thank you all. You've been very helpful, I shall have a chat with my dad, can I assume then that if she doesn't have the shunt done 1) there are no other alternatives and 2) it's just going to get worse if nothing is done. In her mind she just sees it as a memory and mobility problem she won't acknowledge anything else to the point that she's blaming my dad for being the one that's got all the problems, she was even on about calling the police because she was worried he was going to be violent towards her - he wouldn't by the way he's no Saint but he does love her to bits .
 

canary

Registered User
Feb 25, 2014
18,162
0
South coast
can I assume then that if she doesn't have the shunt done 1) there are no other alternatives and 2) it's just going to get worse if nothing is done.
That is indeed my understanding of it.
In her mind she just sees it as a memory and mobility problem she won't acknowledge anything else to the point that she's blaming my dad for being the one that's got all the problems
This loss of insight is very common with dementia and it can happen with normal tension hydrocephalous too. I would talk to her about the surgery in terms of preventing complete loss of mobility and improving mobility/memory and not worry about the rest.
At least this is treatable.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,844
0
Kent
This is what my father had. He died in 1971 aged 53 and less was known about it then. He had stents inserted twice but the fluid continued to build. There was no mention of dementia at the time but knowing what I do now, he did develop many symptoms of dementia.

It was thought the fluid developed after he fell on holiday and refused to have a check up, even though the people with him saw he cracked his head on the stone footpath.

Do you know if your mother has had a fall @Blacktabbycat ?
 

Blacktabbycat

New member
Jan 15, 2022
7
0
That is indeed my understanding of it.

This loss of insight is very common with dementia and it can happen with normal tension hydrocephalous too. I would talk to her about the surgery in terms of preventing complete loss of mobility and improving mobility/memory and not worry about the rest.
At least this is treatable.
Thank you - she has virtually lost all mobility and doesn't want to go out - she's been going on about going on holiday but my dad doesn't even want to entertain it as he knows how much of a struggle it will be - this might be a way to get her to have another think about having the surgery done.
 

Blacktabbycat

New member
Jan 15, 2022
7
0
Sylvia - she's always falling! I'm trying to work out how long this has actually been going on and I can't remember a specific fall that might have caused this - although I could be wrong.
 

Blacktabbycat

New member
Jan 15, 2022
7
0
Hi me again sorry but after a bit more advice - we've tried to get her to make an appointment with the GP and she is flatly refusing to go saying the GP isn't a neurologist and won't be able to tell her anything she doesn't already know. She won't even talk about getting the shunt - shutting every conversation straight down as she's not having it done full stop. She knows what the outcome will be and that's that. We seem to be stuck :rolleyes::rolleyes:
 

Shedrech

Volunteer Moderator
Dec 15, 2012
11,909
0
Yorkshire
Hi @Blacktabbycat Personally I would let both her GP and neurologist know what has been discussed with your mum and what she has said so they are fully aware of the situation
Your mum has the right to make choices even though others may wish for different outcomes .... maybe given a little time she may change her mind

If you can, do arrange LPAs for both your parents, for 'just in case' and look into organising some help in the home, your mum has the right to an assessment of her care needs by their Local Authority Adult Services

 

SERENA50

Registered User
Jan 17, 2018
107
0
Hi I'm after a bit of advice really on my dad's behalf. We strongly suspect my mum has dementia. She has been to the GP and then onto seeing a neurologist - she had an MRI scan done and diagnosed with "water on the brain" (sorry I can't remember the medical term for it). She had a lumber puncture done and when they last saw the consultant he said the last option was to have a shunt put in which she absolutely refuses to have done which I can't really blame her for to be totally honest. My dad asked if there was a possibility it could be anything else ie dementia and the consultant said that he didn't think it could be anything else. We are now at a loss as to what to do next - I've said he needs go to back to the GP and ask for a second opinion, she's totally changed from what she used to be like - memory problems, mobility problems, irrational behaviour and volatility - she can flip out at the slightest thing. My dad is doing a lot of the cooking and cleaning now but I'm worried about him too as he's really struggling with her behaviour -saying it's grinding him down and that he feels trapped. Both of them are retired and have no other interests outside the home (he enjoyed cycling and they both used to go walking which because of her mobility they can't do any more and with the cycling mum has managed to stop him from doing that) . I've done the AD 8 questionnaire and she ticks all the boxes except for maybe one. Help!!!! I'm sorry it's so long but I'm worried about both of them - I have a sister and brother and we all agree that there's something not right.
Hi

My dad has some fluid in his ventricles , brain atrophy as well and the term I think is NPH but other things can cause this as well , he is today after a very long time waiting, having a lumbar puncture and some memory assessments. It is a very rare for of dementia. They will then I guess let us know what the options are for dad and yes that may involve a shunt too. I can say that shine charity are very good if you have not come across them before for advice and information. The fluid builds up and as it cannot drain away it causes cognitive problems because the fluid blocks the signals is the simple understanding I have of it , reasoning and thinking basically dementia type symptoms which some days are more pronounced than other days and in dads case his walking is very different to that of someone with normal ageing , he has had a few tumbles , he gets light headed and has vertigo, short term memory, apathy, lack of empathy, sometimes a bit nasty as well, It took us a while to realise that this was a kind of dementia illness but having accepted that it probably is and we can only do so much has made it easier in some ways.

I find trying to think practically is helpful sometimes. We had the OT out and made the house safer with grab rails etc took a few attempts as dad kept saying he was fine lol. Dad won't use a walker just a stick and he used to love walking and going the gym but those things are not possible now. He would not entertain a wheelchair and I would probably get a right telling off if I suggested it but it would give him the opportunity of seeing he outside world 😕 If you dad cooks all the time would he like to have a meal delivered ? Best thing I guess would be to have a chat with him and see what you can work out together.

It sounds like your Dad needs a break. Is there anyone who could help with housework? We have managed to have a cleaner. Me and my siblings all still work and we don't all live nearby either. I am guessing your mum would be resistant to anything but that doesn't mean you can't have a try. There is a really good thing on here if you haven't seen it for communication and memory problems . Honestly that has really helped change how we go about things. Someone might post the link. When my mum was ill , my dad joined the gym, he made friends and used to enjoy going, gave him a break. Would your dad like to perhaps do something similar ? and someone come and sit with your mum for an hour? Just a thought. After mum passed away Dad carried on with it and still has friends who phone and chat with him.

Just a thought . We keep trying different things. Take Care you are definitely not alone on here 💕
 

Shedrech

Volunteer Moderator
Dec 15, 2012
11,909
0
Yorkshire
Here's the link
 

Blacktabbycat

New member
Jan 15, 2022
7
0
Hi thank you all - I'm going to try and link my sister in on this as I think she should see it too. That link is very helpful and I shall print it off and give it to my dad, we do tell him not to react when she's nasty or being confrontational but he said there's only so much being told to go jump in the canal he can take, or that she wants a divorce.
One thing though - are we able to speak to the GP or neurologist for her - I thought with patient confidentiality we wouldn't be able to. That may be a help if we can. Also neither of them drive and I don't either but I do live closer than my sister and brother - I have told him he can always come here if he needs to, he doesn't really have a hobby or mates (both retired), she's managed to stop him from seeing them - managed to go for a coffee with him last week and I did say he needed to go and see the GP too, it's looking likely that I may be able to meet him on his own again tomorrow so I can stress the importance of looking after himself too.