Yes thank you for that so helpful. If we had a diagnosis they said they’d probably look at ill health retirement
No diagnosis but worrying changes
- Thread starter Jess2023
- Start date
I am not good enough to give opinions on the dementia, I so hope that someone else has any ideas?
But when I attended the appointment I would be saying ‘ you helping me get a diagnosis is the difference between an ill health pension or dismissal with nothing.’
I would also be quite capable of finding a tear or two for such an important project.
My friend is a consultant, and a sucker for hard luck stories, they have such power, it’s up to you to do your best to activate it!
I think that when you go back to the memory clinic or wherever you should pass on what your husband's employers say about him, emphasising the differences between what he used to be like and what he's like now. A letter from his employers would be very helpful.
Sometimes people with dementia-like symptoms are initially diagnosed with depression / anxiety. I really wonder how many people like this do 'just' have a MH condition. I think that this might be more likely to happen if the person is younger i.e. in their 50s and 60s.
I would keep a detailed day-by-day diary recording strange and worrying behaviours and episodes.
Sometimes people with dementia-like symptoms are initially diagnosed with depression / anxiety. I really wonder how many people like this do 'just' have a MH condition. I think that this might be more likely to happen if the person is younger i.e. in their 50s and 60s.
I would keep a detailed day-by-day diary recording strange and worrying behaviours and episodes.
@canary offers you excellent advice, and has an excellent understanding of types of dementia.
Can I suggest you expand the information on your example list.?
example:
We discussed a holiday to Lanzarote, but when I mentioned it the next day he said ‘ we didn’t discuss that at all ! I told you I wanted to go to Turkey’!
Can I suggest you expand the information on your example list.?
example:
We discussed a holiday to Lanzarote, but when I mentioned it the next day he said ‘ we didn’t discuss that at all ! I told you I wanted to go to Turkey’!
Thank you Violet Jane, that’s exactly what I’ve asked for and taking with us the next time we see the Gp.
This sounds very much like my OH who was found on neuropsychology testing to have "anterior brain dysfunction" ie problems in the frontal/temporal lobes of the brain.
I must have been in a right tizzy when I posted. 1st scan was a CT Nov 2021 so 1.5 years not 2.5 but it still seems way to long,
I totally relate to asking husband a question but never get an answer just the same question rephrased. It’s so exhausting adulting alone and I need to learn patience as sure I make situations worse by being annoyed all the time. Im trying (and failing) not to surmise or anticipate what lies ahead just deal with what I’m actually standing in but it’s so out of character for me.
I hope you get some answers too @Jess2023 .
I already identify with these things your saying. I’m trying my best to deal with one week at a time. But with responsibilities increasing it’s very hard, I also have children who are still dependant to it’s all feeling like a living nightmare 😢
Wondering if anyone could offer anymore advice, following my last post my husband is continuing to deteriorate with memory issues day to day and is often disoriented about things happening in our lives, dates times when things are happening. Not interested in life events like our daughters birthday ( not wishing her h bday) or other daughter just finishing school). He is still signed off work and I do not see him returning. Previously really high functioning in a well paid job. Gp is now repeating his bloods all of which came back clear again and suggesting ultrasounds to ensure he is physically well. Had also referred to have another Mri in Nhs but apparently there is a waiting list. I have asked about a Pet scan but she says the mri is the gold standard for brain images. His employer continues to say they will help financially with further testing, what would be the priority - neuropsychological testing / pet ? I am desperate for any advice, he is so hard to live with. His speech is no longer as it was and he forgets words and conversation is not fluid at all, often challenged by things needs me to repeat. Repeating the same conversations on a loop. No insight into his situation at all. Continues to take antidepressants on the GPS advice which I think are pointless. He is actually becoming different to look at too with his facial expressions and normal social cues when to smile not happening. It’s all stark contrast to previous self. Past memory tests and normal for age mri back in April - so keeps repeating he is fine ! Which he most definitely isn’t. I can’t believe how quick and acute the changes are happening can anyone offer me advice about what I should be doing next ? Absolutely exhausted and anxious all the time.
Hi @Jess2023
Why is it the GP who is arranging scans and not the memory clinic? I would have thought it better for the GP to refer him to the memory clinic for further testing as they have more understanding about the different types of dementia and how to diagnose them.
Its good that the GP is checking that there is nothing else going on, but Id like to make a little comment about MRI v PET scans. Generally, MRIs give the best all round view about what is happening within the brain (has he already had one, or just a CT scan?), but there are some things - in particular Frontotemporal Dementia - which an MRI scan does not always pick up. In this case, a PET or SPECT scan is often advised.
Why is it the GP who is arranging scans and not the memory clinic? I would have thought it better for the GP to refer him to the memory clinic for further testing as they have more understanding about the different types of dementia and how to diagnose them.
Yes he has had one Mri in April showed mild cortical and cerebellar atrophy, consultant said normal for his age - he’s nearly 53. She said she would be wanting to rule out physical things / had some kidney issues last year but I feel like it’s a distraction to getting on with a referral to memory clinic. I have looked at private routes for neuropsychological assessment - would that possibly help ? I think there is a waiting list for 9 months plus for memory clinic in our area. He scored highly on the mini memory tests x 2 done three months ago. However with his decline I’m wondering if they would now be as successful.
Neuropsychology assessment wont give a diagnosis, but may provide another piece of the puzzle towards a diagnosis.
Your GP may have a better understanding of dementia than most, but usually they just go on the MMSE and an MRI scan. If these are normal then they dont usually have the knowledge to look further, especially if its a rare form of dementia, and so just keep looking at other physical possibilities, or (like OHs GP) think that its a mental health problem.
Your GP may have a better understanding of dementia than most, but usually they just go on the MMSE and an MRI scan. If these are normal then they dont usually have the knowledge to look further, especially if its a rare form of dementia, and so just keep looking at other physical possibilities, or (like OHs GP) think that its a mental health problem.
I would take up his employer’s offer and take the private route, for tests and advanced scanning.
I would take it up as quickly as I could, because if as his condition deteriorates he has anosognosia, he will start refusing tests or cooperation of any kind ,which will make your life even more difficult.
The observations you make about his facial expressions are interesting, they remind me of that very clever doctor who contacted Jeremy Paxman after observing his facial expressions had changed and he was going into ‘Parkinson’s mask’. How amazing is that ? a correct diagnosis after watching someone on the TV. (Please note, not saying your husband has Parkinson’s, just thought you might find it of interest).
I would take it up as quickly as I could, because if as his condition deteriorates he has anosognosia, he will start refusing tests or cooperation of any kind ,which will make your life even more difficult.
The observations you make about his facial expressions are interesting, they remind me of that very clever doctor who contacted Jeremy Paxman after observing his facial expressions had changed and he was going into ‘Parkinson’s mask’. How amazing is that ? a correct diagnosis after watching someone on the TV. (Please note, not saying your husband has Parkinson’s, just thought you might find it of interest).
I had missed that his employer had offered to pay for it privately.
Yes, I would take up the offer, although the GP still has to refer him
Yes, I would take up the offer, although the GP still has to refer him
The tests really do over focus on memory and language: just because my dad can recognise and name an rhinoceros doesn’t mean he could work out he should run away if one was coming down the street! Just as he can’t work out that he should look at the traffic before starting to cross the road. Or that cutting his duvet cover in half is not the way to deal with being too hot in bed. Or that with a serious heart condition, he can’t go out and dig the vegetable bed Or climb on a garden chair to cut the hedge……
ive been struggling for two years to get a diagnosis for dad. The GP and then the OT from the mental health team gave him these paper based tests that he scores middling on. There’s no reasoning test or problem solving, no risk assessment test, no account taken of reported behaviours. According to the OT he can be left on his own for an hour or two and can make himself simple meals And hot drinks. Even when I told her about the week-old fish paste on fruit pancakes that he’d made for breakfast before we took everything away. Or the endless cups of tea though he’s on restricted fluids. The getting dressed and trying to go post a letter at 3a.m.. He’d be dead in a few weeks/months if I didn’t supervise him 24-7 and sometimes I wonder if that’s the point of their unwillingness. Thank goodness we have a great social worker who has done all she can to get us support but without a formal diagnosis there’s a limit to what she can do ‘in the system’ - and the system is under resourced and understaffed - it’s broke and I will be too if this goes on.
That's shocking. I'm so sorry it's such an ordeal. For goodness sake - all those things you describe in the first para - and yet no diagnosis. Has your husband not yet had another MRI or PET scan? You must be exhausted especially with children to consider as well. Please try to look after yourself and let us know the progress.
