My husband is 65 and has been having memory problems for many years. About 5 years ago it got so bad I pushed him to the doctor. He had memory tests and an MRI scan and we were told it was not dementia. He was diagnosed with depression and put on the highest dose of sertraline and has had no review since. The GP said he had too many mule genes and should behave better. But we were also told that at such a young age, if it was dementia, after a year he would be much worse. He is not much worse, but he is unbearable to live with. We run our own business and he loses us a lot of money with his lack of sense. He is a complete pain insisting on doing things his way when he cannot work anything out getting everything mixed up and forgetting what he has done. The most annoying thing is he blames all his mistakes on others, mostly me or our Asperger son, or often denies something even happened. But when he is in company and especially when with a doctor or psychiatrist he puts on this amazing act where he seems normal and often switched on! Our grown up children feel sorry for him because they think he is ‘old’or has dementia. I feel the GP had him sussed. But is it likely that if he had tests again they would show a different result. At home he is moody, difficult, disorganised and forgetful. When others are around he is comparatively normal. Any ideas, I am at the point of leaving him which will cause great financial stress for us all.
Does this sound like dementia?
- Thread starter Carly23
- Start date
Welcome to TP @Carly23, you will find this a friendly, informative and supportive place.
Yes, what you describe does sound like dementia, but could be other things too. Exhaustive tests, multiple scans, bloods etc., are often required. It took more than an MRI scan to diagnose my wife. I would suggest getting back to the GP but this time take a written note of all your observations to put the doctor fully in the picture. Use a different GP if others are available at the surgery and you think that would be worthwhile.
You sound like you are in understandable distress. If talking would help don't be afraid to use the help line, details as follows
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
Yes, what you describe does sound like dementia, but could be other things too. Exhaustive tests, multiple scans, bloods etc., are often required. It took more than an MRI scan to diagnose my wife. I would suggest getting back to the GP but this time take a written note of all your observations to put the doctor fully in the picture. Use a different GP if others are available at the surgery and you think that would be worthwhile.
You sound like you are in understandable distress. If talking would help don't be afraid to use the help line, details as follows
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
It could be - several of the things you have mentioned ring bells.
Does anything here ring bells for you?
https://www.nhs.uk/conditions/frontotemporal-dementia/symptoms/
https://www.ucsfhealth.org/conditions/frontotemporal_dementia/signs_and_symptoms.html
I would recommend that you go back to the GP and get referred to the memory clinic. In the meantime start to keep a diary of all the odd and concerning things that he does, so that you start to get a picture of his behaviour. Before your appointment, write a letter outlining your concerns. Keep it brief and factual and maybe write it in bullet point so that it is easy to read - if its too long the doctor probably wont read it.
Does anything here ring bells for you?
https://www.nhs.uk/conditions/frontotemporal-dementia/symptoms/
https://www.ucsfhealth.org/conditions/frontotemporal_dementia/signs_and_symptoms.html
I would recommend that you go back to the GP and get referred to the memory clinic. In the meantime start to keep a diary of all the odd and concerning things that he does, so that you start to get a picture of his behaviour. Before your appointment, write a letter outlining your concerns. Keep it brief and factual and maybe write it in bullet point so that it is easy to read - if its too long the doctor probably wont read it.
I'm so sorry for you, because I think I know how you must feel like.
Whether your husband has dementia or not, you feel you can't cope, but , at the same time, you can't leave him on the basis of financial considerations.
I have no idea, I'm afraid. If I had any, I would have put them into practice myself, instead of feeling ( and being) trapped.
Thanks for your prompt replies. There are some points In the links suggested that are familiar, but others not so. As with every idea, some fit, some don’t. I did take a list of odd things and the psychiatrist did say the things I mentioned did sound like dementia, but as they have been going on for so many years and my husband presents so well, he thought it was depression. The fact that one scan and two memory clinic appointments don’t necessarily mean it isn’t dementia was my main query. The idea that I should get back to the GP whilst sound is difficult because the last time it was very much made into my problem as he is happy with the situation. It seems unless he is unhappy about his abilities, it doesn’t matter. Since posting I have read more threads, it is all so familiar and depressing. I just think the whole process is so slow that I don’t have the staminer to see it through. Thank you so much for your help, it is so sad that so many people are struggling but getting no real help in the real world. Good luck to you all and thanks.
Your last 4 lines sound like desolation. Do give the help line a try - I gave the details earlier - it may help you. We do understand as we all travel the same journey. Help is out there but sometimes we have to push for it.
A tentative point. Dementia is progressive. I see it almost every day in all its varied forms. As a rule, people subject to that disease cannot 'switch on and off' (i.e. 'amazing act') whatever company they are in. There are 'lucid moments' of course, but overall, this disease presents in such a way as to make its mark, especially in respect of clinical observation. Depression most certainly comes into all of this and it seems prudent to have a further assessment. Psychiatric problems are not dementia problems - albeit they often seem to mimic one another. The antidepressant you cite at the start of your post suggests depression as an underlying cause, but it will take a proper assessment to answer your question. And you will know very well as to what constitutes 'normal' behaviour, which is very valuable in any assessment, to gauge what might be actually going on cognitively speaking.
Thanks. The forum has been helpful. Vascular dementia sounds very fitting. Googling the symptoms of vascular dementia, I came across the NHS definition and my husband fits every point. I might try the helpline one day, but with an Asperger adult, I have been through it all before and don’t really find talking helps, just makes me feel totally fed up with the whole situation.
Thank you all for your help.
Thank you all for your help.
Thank you hazara8, I do see what you mean. This was my understanding, that they couldn’t ‘behave’ when it suited them, but then so many people speak of this behaviour in their posts and in articles I have read in newspapers etc. I’m sure mental health, depression, dementia, Aspergers are all linked and there are so many combinations it is impossible to reason, I feel surrounded by it.
Thank you for your comments
Thank you for your comments
My OH was initially diagnosed with depression and nothing showed on the MRI scan, but it was obviously getting worse and I had to push really hard for a diagnosis.
The way that a person with dementia can sort of pull themself together when faced with doctors and other family members is well known on here and is known as "host/hostess mode". I have seen it at first hand with both my mum and my OH and it is totally jaw-dropping. It seems to be an almost subconscious act, they can only maintain it for fairly short periods of time (less as the disease progresses) and it leaves them very tired, but when it is in full swing my mum could fool people who didnt know her very well right up until she reached the severe stage and my OH appears so lucid and plausible that he managed to convince doctors that I was making things up!
The other thing is that in the initial stages the symptoms do come and go as the brain is mis-firing - a bit like a light that is "on the blink"
The way that a person with dementia can sort of pull themself together when faced with doctors and other family members is well known on here and is known as "host/hostess mode". I have seen it at first hand with both my mum and my OH and it is totally jaw-dropping. It seems to be an almost subconscious act, they can only maintain it for fairly short periods of time (less as the disease progresses) and it leaves them very tired, but when it is in full swing my mum could fool people who didnt know her very well right up until she reached the severe stage and my OH appears so lucid and plausible that he managed to convince doctors that I was making things up!
The other thing is that in the initial stages the symptoms do come and go as the brain is mis-firing - a bit like a light that is "on the blink"
Dealing with the symptoms of dementia seems a bit like playing chess, you are constantly planning the next move or even one or two ahead, but then get checked by an unexpected move by your opponent and have to regroup. I was reluctant to use the word ‘opponent’ in this case but at times it does feel like that. I often ask myself the question ‘is this dementia?’, but in just asking that I know the answer is yes.
On second thoughts maybe it’s more like poker.
On second thoughts maybe it’s more like poker.
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Thanks everyone for you valuable insights. Just thinking that whatever the cause is , there is no answer as anti depressants have changed nothing for me although he says they have lifted his mood. If I could label it dementia, how would that improve anything? The fact is, as the psychiatrist said, he is not complaining about his difficulties, if I can’t live with them, that is my problem. I do think he has a lot of learned behaviour i.e if I pretend to forget jobs, someone else will do them. I am at fault for being too efficient and too busy to notice that I am being played. This has been going on for many years, there is no end whatever the diagnosis at 65, he will not improve. Whilst talk of helplines and days away sound great, it is after talking about it or having a day away with my grandchildren that brings on the worst of feelings when you have to walk back into it. I wish you all the best of luck and hope you all find your best way of coping.
@Carly23 as far as I can see, not many dementia sufferers admit to having any problems, or at least a sizeable number of them don’t. My OH doesn’t think he has any memory or any other problems, yet he can’t remember what we are doing even just after I have told him. I look at it like this, he doesn’t know because he doesn’t know, because... etc. I too have always done everything except do the work to earn the money, which is a considerable achievement, but I think that this has masked any difficulties he might have had for quite a long time. I have had to adjust a huge amount to cope and even so get exasperated.
I read somewhere that 80% of people with dementia are not able to comprehend that there they are having problems, or to comprehend the extent of their problems.
Yes @Carly23 , getting a diagnosis wont change our PWDs (people with dementia), but what I found that it did was change my mindset. I got close to leaving OH at one point before diagnosis because I considered him to be totally unreasonable, constantly blaming me, doing nothing, lying, and I considered him impossible to live with. This was because I had been told that there was nothing wrong, that he was just depressed and I thought he was being like this on purpose.
After the diagnosis, everything shifted and I realised why he was behaving the way he was. I changed my viewpoint and the way I related to him; learned techniques on how to cope and rearranged my life. I dont want to minimise it - its not easy and I still get very annoyed at times. I can understand that you might not want to go through with this, but you have posted on here and Im thinking that if you were so set on leaving him you would have simply done so by now.
Yes @Carly23 , getting a diagnosis wont change our PWDs (people with dementia), but what I found that it did was change my mindset. I got close to leaving OH at one point before diagnosis because I considered him to be totally unreasonable, constantly blaming me, doing nothing, lying, and I considered him impossible to live with. This was because I had been told that there was nothing wrong, that he was just depressed and I thought he was being like this on purpose.
After the diagnosis, everything shifted and I realised why he was behaving the way he was. I changed my viewpoint and the way I related to him; learned techniques on how to cope and rearranged my life. I dont want to minimise it - its not easy and I still get very annoyed at times. I can understand that you might not want to go through with this, but you have posted on here and Im thinking that if you were so set on leaving him you would have simply done so by now.
Thanks @canary,
Those words of yours made me think.
I have to change my mindset since there is no way to change my husband's.
This is my life right now. DH has Asperger's and I think he has started down the road with linguistic variant frontotemporal dementia. I documented for two months the changes in personality, the confusion and the cognitive lapses he is experiencing and went to talk to our GP by myself. She is concerned, and has set up an appointment for more testing, with a referral to a neurologist if the tests are suggestive of dementia.
The hostessing is really a pain. He will admit how confused he is to me and wants assistance in everything to the point where I feel he has turned me into a 24/7 personal aid & yet when faced with a professional who can get him help? He is fine and I'm exaggerating the problems, it is just his AS and stress.
The difficulty I face is that because of the AS he has different definitions of what it is to be a person and how other people beyond himself expect to be treated. Right now he see he needs help and expects me to deny all aspects of my own life, personality etc and be of service to him. Because of the dementia he makes mistakes and drops important financial and business tasks that I must constantly monitor both my life and his decisions actions etc. I am at the end of my tether, both because I am treated as a useful object or tool, while being under constant legal & financial threat by his actions. If we could get the diagnosis I could remove all financial decision making from him and lower the stress of what I will discover he's done next.
I am getting help, I have a supportive GP, this disease is just so invisible especially against Asperger's that no sees the hell of lives that have no normal, no ground to stand on that cannot shift and tilt at any moment, and a husband who is more than willing to throw me under the bus to protect his own image of himself as okay.
Welcome to TP, @gnomemother. I'm sorry you have the stress of seeking a diagnosis and a husband in denial. Those feelings of taking on the work of two people and frustrations of his denial are familiar to everyone here.
Have you read the compassionate communication guidelines? Not as easy in practice, but may help you deal with some harder conversations.
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Meanwhile, if you start your own thread on
https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
you should get more support.
Good luck and best wishes.
Have you read the compassionate communication guidelines? Not as easy in practice, but may help you deal with some harder conversations.
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Meanwhile, if you start your own thread on
https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
you should get more support.
Good luck and best wishes.
Hello @gnomemother - my OH has FTD, so I know what you are talking about. The loss of empathy is hard. Yes, he can only see how things relate to him and is unable to see things from anyone elses view point (least of all mine) and is unable to see how his demands and actions impact on anyone else, or what the result of his action is likely to be. He wants something - he does it, or demands that I do it and if it doesnt happen he gets into a temper.
OH is too aware to use "love lies", but I have found that when replying starting the sentence with "yes" and then saying what you need to say (even if you are actually saying no) helps a lot. If you cant do what he wants try delaying it (yes, good idea - we can do this after lunch/at the weekend/whenever), blaming something/someone else (yes, but its far too cold at the moment; yes it would be nice, but the doctor says you shouldnt) or distracting him (yes, but shall we have a cup of tea and some cake first?). Its not easy to do, but does get easier with practise.
OH is too aware to use "love lies", but I have found that when replying starting the sentence with "yes" and then saying what you need to say (even if you are actually saying no) helps a lot. If you cant do what he wants try delaying it (yes, good idea - we can do this after lunch/at the weekend/whenever), blaming something/someone else (yes, but its far too cold at the moment; yes it would be nice, but the doctor says you shouldnt) or distracting him (yes, but shall we have a cup of tea and some cake first?). Its not easy to do, but does get easier with practise.
