No diagnosis, just concerns

[RM3]

Hello. This is my first post (sorry it’s long).
I have concerns about my 58 year old husband. He did go to the memory clinic about 15 months ago and this was followed by and MRI and was given the all clear.
However, I have continued to see changes in him. He has always worked in engineering but had a job change due to redundancy last year (having struggled to grasp the new role they offered him).
He has since taken a 50% pay cut, to work in a less demanding engineering role - but still struggles. He seems to have difficulty with numbers (he had to add one to a number a few days ago and after a struggle, had to use his phones calculator). It was a nightmare 2 days getting him through his induction. He does seem to have settled in now though, 6 months in.
There are so many subtle things. Mostly only I would notice (although our daughters also do). He likes routine more and more for one (walks on the same routes for example), happy to sit on the sofa and watch YouTube for hours (not something he would have done until the last couple of years), mostly he watches the same handful of people who do walks through particular towns.
My mum passed unexpectedly 3 months ago. He would usually be my rock but he felt quite empty (best I can explain). My dad stayed with us for about 3 weeks and although my husband doesn’t use his car for work (or anything much), he was absolutely obsessed and fixated on it being blocked in on the driveway in front of our other car and my dads car. He kept taking it out to leave at his parents near by and then bringing it back.
He struggles with planning and problem solving. He has always done diy and lots of decorating over the years. He struggled today with the instructions to mix wallpaper paste and I had to step in and do it.
I have to watch him with the injections for our diabetic dog (hubby usually does the injections). I asked him a few days ago if had given and he said he felt like he had but also like he hadn’t. We checked the nearly full sharps bin and there was a needle near the top, still with the insulin in,
He is a bit anxious if I’m not home and is getting quite clingy with me.
The best way that I can describe how he seems to me, is a bit vulnerable.
Although this sounds probably obvious, he also functions quite ‘normally’ and most wouldn’t think anything.
He thought a few weeks ago that his pants and top had been stolen from the drier in the shed. After having me look everywhere for them, I found them in his wardrobe (washed, dried and ironed, which he had done).
He thought today, just for a moment, that some rolls of wallpaper had been taken from his boot. He then quickly remembered that he’d already taken them to our daughters house.
I am starting to make allowances for him, without even realising.
There are so many examples but this just gives a few to explain the reason for my concerns. I am not sure if I should ask him if he will go back to the doctors. It was only just over a year ago though that he had the ok from an MRI. Any thoughts or similar experiences would be very welcome. Thank you.

 

[Fugs]

Dear @RM3. Some of the details are different , but you could almost be describing my wife. She had an all-clear from an MRI, but this can happen with Early Onset Alzheimers. It took a PET-CT scan 8 months later to get an official diagnosis. Since it has been 15 months perhaps a follow up is required?

 

[Julie1964]

Hello. This is my first post (sorry it’s long).
I have concerns about my 58 year old husband. He did go to the memory clinic about 15 months ago and this was followed by and MRI and was given the all clear.
However, I have continued to see changes in him. He has always worked in engineering but had a job change due to redundancy last year (having struggled to grasp the new role they offered him).
He has since taken a 50% pay cut, to work in a less demanding engineering role - but still struggles. He seems to have difficulty with numbers (he had to add one to a number a few days ago and after a struggle, had to use his phones calculator). It was a nightmare 2 days getting him through his induction. He does seem to have settled in now though, 6 months in.
There are so many subtle things. Mostly only I would notice (although our daughters also do). He likes routine more and more for one (walks on the same routes for example), happy to sit on the sofa and watch YouTube for hours (not something he would have done until the last couple of years), mostly he watches the same handful of people who do walks through particular towns.
My mum passed unexpectedly 3 months ago. He would usually be my rock but he felt quite empty (best I can explain). My dad stayed with us for about 3 weeks and although my husband doesn’t use his car for work (or anything much), he was absolutely obsessed and fixated on it being blocked in on the driveway in front of our other car and my dads car. He kept taking it out to leave at his parents near by and then bringing it back.
He struggles with planning and problem solving. He has always done diy and lots of decorating over the years. He struggled today with the instructions to mix wallpaper paste and I had to step in and do it.
I have to watch him with the injections for our diabetic dog (hubby usually does the injections). I asked him a few days ago if had given and he said he felt like he had but also like he hadn’t. We checked the nearly full sharps bin and there was a needle near the top, still with the insulin in,
He is a bit anxious if I’m not home and is getting quite clingy with me.
The best way that I can describe how he seems to me, is a bit vulnerable.
Although this sounds probably obvious, he also functions quite ‘normally’ and most wouldn’t think anything.
He thought a few weeks ago that his pants and top had been stolen from the drier in the shed. After having me look everywhere for them, I found them in his wardrobe (washed, dried and ironed, which he had done).
He thought today, just for a moment, that some rolls of wallpaper had been taken from his boot. He then quickly remembered that he’d already taken them to our daughters house.
I am starting to make allowances for him, without even realising.
There are so many examples but this just gives a few to explain the reason for my concerns. I am not sure if I should ask him if he will go back to the doctors. It was only just over a year ago though that he had the ok from an MRI. Any thoughts or similar experiences would be very welcome. Thank you.

Hi - this is my first post too. So sorry to hear how worried you are. We have been through a similar situation. My husband had a confirmed diagnosis of Alzheimers at the end of last year. We initially went to a memory clinic and had some cognitive tests and an MRI scan. This scan was all clear and we were given the impression this meant he did not have dementia. But the clinic did more in depth cognitive tests and diagnosed Alzheimers based on these. After this we felt very shocked and uncertain and saw a nerologist privately who explained only a PET scan can identify the amyloid deposits associated with alzheimers. We had a PET scan and sadly this did identify amyloid deposits and confirm the Alzheimers. Unfortunately MRI scans can be clear. I do hope you can get some answers. Although we would obviously have preferred a different result we feel stronger and better able to cope now.

 

[RM3]

Dear @RM3. Some of the details are different , but you could almost be describing my wife. She had an all-clear from an MRI, but this can happen with Early Onset Alzheimers. It took a PET-CT scan 8 months later to get an official diagnosis. Since it has been 15 months perhaps a follow up is required?

@Fugs, thank you for your reply and sharing your experience.
I do think that I will try for another appointment with the GP. I am more worried that it’s me that is reading into things and overthinking these examples. I think for my husbands sake (more because I feel for him with the struggles at work), that it is worth risking (and hopefully so), being proven to be worrying about nothing. Many thanks again and best wishes to you.

 

[RM3]

Hi - this is my first post too. So sorry to hear how worried you are. We have been through a similar situation. My husband had a confirmed diagnosis of Alzheimers at the end of last year. We initially went to a memory clinic and had some cognitive tests and an MRI scan. This scan was all clear and we were given the impression this meant he did not have dementia. But the clinic did more in depth cognitive tests and diagnosed Alzheimers based on these. After this we felt very shocked and uncertain and saw a nerologist privately who explained only a PET scan can identify the amyloid deposits associated with alzheimers. We had a PET scan and sadly this did identify amyloid deposits and confirm the Alzheimers. Unfortunately MRI scans can be clear. I do hope you can get some answers. Although we would obviously have preferred a different result we feel stronger and better able to cope now.

Hello @Julie1964. Thank you for your reply and for sharing. I am sorry to hear of people going through this but there is some comfort in shared experiences.
I think that it is just that some days I think - what am I on about thinking this and then something will happen and I think oh gosh, this is a worry. I think that I felt a bit embarrassed for him and me last time, as I had been the one to raise concerns and push for an appointment and then it was all good (not that that was disappointing but it didn’t give me an explanation for my concerns).
He asked his mum and dad for a skateboard for Christmas (he loved skateboarding in his teens). Although it was laughed off, it’s just not quite right. He quickly realised that he could not recapture his youth unfortunately.
I am grateful for people reading and sharing experiences and I think that I will look at us speaking to the GP again.

 

[Violet Jane]

I think that the inability to do basic problem solving and planning is a big red flag but it's not tested in the basic tests they do at the memory clinic. Early on, my mother started to struggle with money and understanding basic things such as her passport not having expired. She couldn't negotiate the stages in a flight to Belfast which she had done many times before. She would tell me that she didn't know how to turn the heating on. Her sense of time became skewed as well. On top, she did forget instructions as well.

You know your husband best and can see worrying changes in a once competent and practical man. He might not have dementia but something is clearly wrong. Be prepared for the medics to suggest that anxiety / depression / stress are to blame. This often happens with younger people. I would love to know how often a relative's instincts are wrong and the problems are just attributable to these other things.

 

[RM3]

I think that the inability to do basic problem solving and planning is a big red flag but it's not tested in the basic tests they do at the memory clinic. Early on, my mother started to struggle with money and understanding basic things such as her passport not having expired. She couldn't negotiate the stages in a flight to Belfast which she had done many times before. She would tell me that she didn't know how to turn the heating on. Her sense of time became skewed as well. On top, she did forget instructions as well.

You know your husband best and can see worrying changes in a once competent and practical man. He might not have dementia but something is clearly wrong. Be prepared for the medics to suggest that anxiety / depression / stress are to blame. This often happens with younger people. I would love to know how often a relative's instincts are wrong and the problems are just attributable to these other things.

Hello @Violet Jane. Thank you for your reply and sharing your experience.
I think that what you say is so true and although my husband has never suffered with low mood or anxiety, changes in life and work i suppose are things that could be triggers for this.
He is at his happiest nowadays, if he is at home and it’s just him and me, or if we are on his favourite walk together.
I am in two minds and do wonder, if I stopped looking for signs or reading in to things, would they go away. Thank you once again and I wish you well.

 

[Newplodder]

Hello...I just thought I would add that I experienced similar with my husband. There were occasional odd happenings that I put down to one offs, or him not hearing me properly etc. He went through the memory testing but was dismissed immediately as he scored highly. At the time, this was a relief and I convinced myself I had been mistaken. However, more small things kept happening and my once clever and practical husband was struggling increasingly with things he used to take in his stride. Back to the clinic a year later and this time, he was diagnosed with vascular dementia. He also had an MRI which showed nothing obvious..except that they could rule out a stroke or growth etc. The diagnosis has helped in that at least we know formally, and I no longer think I am over thinking things. On a financial level, he has been able to claim attendance allowance and a GP has signed the certificate to get a reduction in council tax. This is helpful. It's difficult though, especially on an emotional level. Good luck xx

 

[RM3]

Hello...I just thought I would add that I experienced similar with my husband. There were occasional odd happenings that I put down to one offs, or him not hearing me properly etc. He went through the memory testing but was dismissed immediately as he scored highly. At the time, this was a relief and I convinced myself I had been mistaken. However, more small things kept happening and my once clever and practical husband was struggling increasingly with things he used to take in his stride. Back to the clinic a year later and this time, he was diagnosed with vascular dementia. He also had an MRI which showed nothing obvious..except that they could rule out a stroke or growth etc. The diagnosis has helped in that at least we know formally, and I no longer think I am over thinking things. On a financial level, he has been able to claim attendance allowance and a GP has signed the certificate to get a reduction in council tax. This is helpful. It's difficult though, especially on an emotional level. Good luck xx

Hello @Newplodder. Thank you so much for sharing your experience with me. I change from one day to the next whether I think I am just overthinking these changes or happenings. I think I worry more for my husband struggling at work, or missing being able to get help to slow things - if there were anything. Then the next day, I feel silly for worrying about it. There is no family history.
Some of the first concerns for me were about 2 years ago. He was tiling a splashback for us and used a full box of tiles on the first one, which needed a cut. When I looked to help him. He was using the first wrongly cut tile as a template for the next ones. Just that sort of difficulty really, that he never would have struggled with before.
Do you mind me asking if you noticed any changes in personality early on? Thank you once again and I wish you and your husband well xx

 

[Newplodder]

Hello @RM3 ...yes to the question about personality change. For me there has been an improvement! He was always the sort to get outwardly angry if he was stressed. He used to manage by shutting himself away for a while until he felt better. About 3 years ago it became apparent that he was getting less irritated about things that used to bug him....it's almost as though his personality has become "flat" if that makes sense? He isn't depressed, he has just "mellowed". I'm hoping this will continue, as amongst all the difficulties and sadness, at least this is better for me! Like you, in terms of DIY, I first started wondering when we were measuring something together to plan where to put a screw! He just couldn't work out a simple sum...at that time, he still got cross with me :-(...not sure if it was because he thought I was wrong or whether he realised himself something was amiss. His social skills seemed to deteriorate at the same time also...just in a small way eg he would always be a good host and offer a drink immediately to visitors, but he stopped doing this....he has also stopped showing any real interest in the wider family and rarely initiates contact with his own adult children. We are still in contact, but now I make it happen more. It's about 3 years since I started questioning things. His adult children noticed a big change in him after they had seen him again after several months. They noticed more than I had, as I think I had been in denial and had been gradually accommodating his changes. His daughter particularly noticed how he would continually look to me for guidance around straightforward stuff...I hadn't noticed :-(
My husband was not under any particular stress, so it became increasingly apparent to us that it must be some form of dementia. So here we are and he is noticeably more advanced now.
I don't know whether this is helpful, but I wish you and your husband well xx

 

[Deeds]

Hello. This is my first post (sorry it’s long).
I have concerns about my 58 year old husband. He did go to the memory clinic about 15 months ago and this was followed by and MRI and was given the all clear.
However, I have continued to see changes in him. He has always worked in engineering but had a job change due to redundancy last year (having struggled to grasp the new role they offered him).
He has since taken a 50% pay cut, to work in a less demanding engineering role - but still struggles. He seems to have difficulty with numbers (he had to add one to a number a few days ago and after a struggle, had to use his phones calculator). It was a nightmare 2 days getting him through his induction. He does seem to have settled in now though, 6 months in.
There are so many subtle things. Mostly only I would notice (although our daughters also do). He likes routine more and more for one (walks on the same routes for example), happy to sit on the sofa and watch YouTube for hours (not something he would have done until the last couple of years), mostly he watches the same handful of people who do walks through particular towns.
My mum passed unexpectedly 3 months ago. He would usually be my rock but he felt quite empty (best I can explain). My dad stayed with us for about 3 weeks and although my husband doesn’t use his car for work (or anything much), he was absolutely obsessed and fixated on it being blocked in on the driveway in front of our other car and my dads car. He kept taking it out to leave at his parents near by and then bringing it back.
He struggles with planning and problem solving. He has always done diy and lots of decorating over the years. He struggled today with the instructions to mix wallpaper paste and I had to step in and do it.
I have to watch him with the injections for our diabetic dog (hubby usually does the injections). I asked him a few days ago if had given and he said he felt like he had but also like he hadn’t. We checked the nearly full sharps bin and there was a needle near the top, still with the insulin in,
He is a bit anxious if I’m not home and is getting quite clingy with me.
The best way that I can describe how he seems to me, is a bit vulnerable.
Although this sounds probably obvious, he also functions quite ‘normally’ and most wouldn’t think anything.
He thought a few weeks ago that his pants and top had been stolen from the drier in the shed. After having me look everywhere for them, I found them in his wardrobe (washed, dried and ironed, which he had done).
He thought today, just for a moment, that some rolls of wallpaper had been taken from his boot. He then quickly remembered that he’d already taken them to our daughters house.
I am starting to make allowances for him, without even realising.
There are so many examples but this just gives a few to explain the reason for my concerns. I am not sure if I should ask him if he will go back to the doctors. It was only just over a year ago though that he had the ok from an MRI. Any thoughts or similar experiences would be very welcome. Thank you.

Thank you for detailing exactly what I am experiencing with my husband. It was helpful to have someone else spell it all out. I cannot offer help as I am a newbie and have know idea what you and I are going to do. I am in worse shape because my husband refuses to admit he has any issues other than normal memory problems due to aging. He has NOT been tested at all because he “fires” any doctor that suggests testing. I have no idea what I am going to do. Do let me know if anyone suggests something that helps you. Thanks again. Deeds

 

[Newplodder]

Hello @RM3 ...yes to the question about personality change. For me there has been an improvement! He was always the sort to get outwardly angry if he was stressed. He used to manage by shutting himself away for a while until he felt better. About 3 years ago it became apparent that he was getting less irritated about things that used to bug him....it's almost as though his personality has become "flat" if that makes sense? He isn't depressed, he has just "mellowed". I'm hoping this will continue, as amongst all the difficulties and sadness, at least this is better for me! Like you, in terms of DIY, I first started wondering when we were measuring something together to plan where to put a screw! He just couldn't work out a simple sum...at that time, he still got cross with me :-(...not sure if it was because he thought I was wrong or whether he realised himself something was amiss. His social skills seemed to deteriorate at the same time also...just in a small way eg he would always be a good host and offer a drink immediately to visitors, but he stopped doing this....he has also stopped showing any real interest in the wider family and rarely initiates contact with his own adult children. We are still in contact, but now I make it happen more. It's about 3 years since I started questioning things. His adult children noticed a big change in him after they had seen him again after several months. They noticed more than I had, as I think I had been in denial and had been gradually accommodating his changes. His daughter particularly noticed how he would continually look to me for guidance around straightforward stuff...I hadn't noticed :-(
My husband was not under any particular stress, so it became increasingly apparent to us that it must be some form of dementia. So here we are and he is noticeably more advanced now.
I don't know whether this is helpful, but I wish you and your husband well xx

Just to add, I also was so keen to get my husband diagnosed in the hope that there would be some treatment that would help. We even paid privately for an MRI :-( ..the waiting list was upwards of 7 months (North Wales) and we were told nobody would give a diagnosis until that had been done. ... we would still have been waiting now I reckon. Sadly, there is no real treatment for my husband (apart from being given tips around memory etc). But at least we know. And as a result, I think an official diagnosis with the names of the various health care professionals involved helped to get Attendance Allowance. I know I was reluctant to apply until we had a diagnosis. We will also claim the 25% discount on our council tax, so we will recuperate the cost of the MRI at least!

 

[Cardinal]

You know your husband best. You will probably notice problems before anyone else. Like you I questioned whether it was just my imagination or was my husband showing signs of dementia. Early on his GP ordered an MRI which came back with some shrinkage but within normal limits. It then took me another 5 years to get him referred to a memory clinic. There they did a lot of tests including a lumbar puncture. Almost all of the tests overwhelmingly indicated he had Alzheimer’s. The lumbar puncture showed high levels of the amyloid protein that indicates Alzheimer’s. It has been 2 years since his diagnosis. My husband can go for days where he seems totally normal and I question the diagnosis then I go back and reread the test results.
First things I noticed, that seemed off to me. His reasoning skills were off, such as he couldn’t figure out how to pay bills. He complained about things having to do with his senses, such as restaurants being too noisy, cooking food smelling up the house, light coming in the windows too bright. His personality, for the most part, is actually nicer. He is more mellow and is always trying to help around the house.

 

[RM3]

Just to add, I also was so keen to get my husband diagnosed in the hope that there would be some treatment that would help. We even paid privately for an MRI :-( ..the waiting list was upwards of 7 months (North Wales) and we were told nobody would give a diagnosis until that had been done. ... we would still have been waiting now I reckon. Sadly, there is no real treatment for my husband (apart from being given tips around memory etc). But at least we know. And as a result, I think an official diagnosis with the names of the various health care professionals involved helped to get Attendance Allowance. I know I was reluctant to apply until we had a diagnosis. We will also claim the 25% discount on our council tax, so we will recuperate the cost of the MRI at least!

Hi @Newplodder. Thank you, it is so helpful to know what others have experienced as earlier symptoms. You describe my husbands personality change - almost to a tee. His personality has mellowed so much (apart from getting anxious about me not been there if I’m away unexpectedly, or for too long. His new boss shouted at him recently. for making some mistakes with measurements - when our daughters’ asked him how he handled it, he said that if he gets into ‘bother’ at work, he just goes to the machine and gets a Yorkie bar! This is not how my husband would have been previously.
I am just so grateful to know what others early experiences were and this will help me decide what and when I should suggest anything. Thank you and very best wishes to you xx

 

[RM3]

Thank you for detailing exactly what I am experiencing with my husband. It was helpful to have someone else spell it all out. I cannot offer help as I am a newbie and have know idea what you and I are going to do. I am in worse shape because my husband refuses to admit he has any issues other than normal memory problems due to aging. He has NOT been tested at all because he “fires” any doctor that suggests testing. I have no idea what I am going to do. Do let me know if anyone suggests something that helps you. Thanks again. Deeds

Hello @Deeds. Thank you for replying to my post. I am sorry that you are seeing concerning symptoms too.
Hopefully the posts on here from people further along, will be helpful to us both. I suppose that worse case scenario if an appointment is refused at the moment, is that symptoms I guess, will become less vague and more apparent over time and there will perhaps be more awareness of this by them (and they may then agree to get tests), or, if and when symptoms progress, they will have less insight and may be easier to persuade - perhaps.
Thank you again and I wish you well xx

 

[Jaded'n'faded]

I always think it is worth keeping a diary of all the little things you notice on a daily basis. Individually they seem insignificant, especially if you're telling someone else (e.g. a doctor) about the sort of things you've noticed. But if it's written down you'll have a much better idea of how big the problem really is and a doctor can also see these may be insignificant things individually but they're happening every day, all day long.

 

[Ellie2018]

Much if this sounds like my husband years ago, they did the tests - he got the highest scores they’d seen and was subsequently diagnosed with depression - high risk due to retiring, having a responsible job and not having that responsibility any longer and losing some hearing, so different but some parallels to your husband. He went on tablets and things improved but not resolved, subsequently turned into mild cognitive impairment and now Alzheimer’s- some 12 years or so later. It might be worth checking this out. He certainly wasn’t someone that you would imagine to have depression or any history and it happens to anyone. Good luck with it all.

 

[RM3]

You know your husband best. You will probably notice problems before anyone else. Like you I questioned whether it was just my imagination or was my husband showing signs of dementia. Early on his GP ordered an MRI which came back with some shrinkage but within normal limits. It then took me another 5 years to get him referred to a memory clinic. There they did a lot of tests including a lumbar puncture. Almost all of the tests overwhelmingly indicated he had Alzheimer’s. The lumbar puncture showed high levels of the amyloid protein that indicates Alzheimer’s. It has been 2 years since his diagnosis. My husband can go for days where he seems totally normal and I question the diagnosis then I go back and reread the test results.
First things I noticed, that seemed off to me. His reasoning skills were off, such as he couldn’t figure out how to pay bills. He complained about things having to do with his senses, such as restaurants being too noisy, cooking food smelling up the house, light coming in the windows too bright. His personality, for the most part, is actually nicer. He is more mellow and is always trying to help around the house.

Hello @Cardinal. Thank you for responding to my post - much appreciated.
I am sorry to hear of the diagnosis.
It is helpful to read the earlier symptoms to be aware of and I suppose validate some doubts that I have too. The mellowing personality is a surprise because I associated some aggression with Alzheimer’s/Dementia. My husband has definitely mellowed.
I am taking everything that I read on board.
Thank you once again and very best wishes. X

I always think it is worth keeping a diary of all the little things you notice on a daily basis. Individually they seem insignificant, especially if you're telling someone else (e.g. a doctor) about the sort of things you've noticed. But if it's written down you'll have a much better idea of how big the problem really is and a doctor can also see these may be insignificant things individually but they're happening every day, all day long.

hello @Jaded'n'faded. That is a very good idea thank you. I will perhaps spend 2 or 3 months keeping a diary. It is true that when you recall this or that, it sounds insignificant but if there were a more complete picture over a period of time, I think this would give a much better understanding of the reasons for my concerns. Thank you once again.

 

[RM3]

Much if this sounds like my husband years ago, they did the tests - he got the highest scores they’d seen and was subsequently diagnosed with depression - high risk due to retiring, having a responsible job and not having that responsibility any longer and losing some hearing, so different but some parallels to your husband. He went on tablets and things improved but not resolved, subsequently turned into mild cognitive impairment and now Alzheimer’s- some 12 years or so later. It might be worth checking this out. He certainly wasn’t someone that you would imagine to have depression or any history and it happens to anyone. Good luck with it all.

Hello @Ellie2018. I am sorry to hear about the diagnosis but I do appreciate your response and sharing details of your experience.
I do wonder if his redundancy has played a part in his changes in personality and abilities. You never really know what goes on inside for someone (even though they may say they are not effected emotionally by something like that). Thank you once again and I wish you well.

 

[Troy1-7]

Interested to read your post on my first day here which mentions some of my symptoms and most interestingly the same numeracy difficulty as I have experienced which also limited my employment progress due to difficulty understanding project plans.