Agreed to see the doctor again.

[Kevinl]

Or something stronger, you've earned it, just the one though and only you.
How do people on here cope, it amazes me, something over 10 years on here and I still get amazed by what I read, well done RM3, virtual and a big pat on the back from me. K

 

[RM3]

Or something stronger, you've earned it, just the one though and only you.
How do people on here cope, it amazes me, something over 10 years on here and I still get amazed by what I read, well done RM3, virtual and a big pat on the back from me. K

Thank you @Kevinl. Thank goodness for this forum

 

[hillyjay]

Just a footnote too - been for my ultrasound this afternoon (just to check for Gallstones). I saw him at lunchtime before I went and we discussed me being grumpy because I couldn’t eat or drink. He’s in from work now and not a word of how did it go. I tested the water by saying I’m glad to have eaten now after my scan - he laughed and said thought you seemed happier. Not a word to ask how it went!
I don’t know if he’s just being unthoughtful or other. I know it’s not drifting apart because he likes me to be around more than ever.
If I knew there was nothing, I would be having a go now, accusing him of not caring. I think I need a stiff cup of coffee! X

Do you think we were twins in another life - or our husbands were? When I had my ultrasound where they found gallstones, I was the same, very grumpy because I couldn’t eat or drink, not helped by offering me a cup of tea or a glass of wine or some cheese and biscuits. (i think because he wanted one😀). When I got back, same reaction as yours. No interest, no question as to how did it go.
Not sure if it’s thoughtless, more a case of it’s something which doesn’t affect him, therefore very little curiosity. I had a bad day today, the usual symptoms, feeling yuk, bloated, side aching etc etc. No concern whatsoever.

 

[RM3]

Do you think we were twins in another life - or our husbands were? When I had my ultrasound where they found gallstones, I was the same, very grumpy because I couldn’t eat or drink, not helped by offering me a cup of tea or a glass of wine or some cheese and biscuits. (i think because he wanted one😀). When I got back, same reaction as yours. No interest, no question as to how did it go.
Not sure if it’s thoughtless, more a case of it’s something which doesn’t affect him, therefore very little curiosity. I had a bad day today, the usual symptoms, feeling yuk, bloated, side aching etc etc. No concern whatsoever.

Ha - it’s so bizarre how similar people and situations can be. Probably why it’s so helpful to share and know it’s not just you.
Aww no - sorry that you’ve been uncomfortable today. It’s really hard not having care shown to you isn’t it - especially when so much is demanded from us (not as much for me at this point as for many others). I hope you get some time to put your feet up. X

 

[Violet Jane]

Loss of empathy is common in early stage dementia. That's probably why, in the absence of other significant deficits evidenced by a poor score on the standard memory tests, doctors will often attribute changes in behaviour to depression, stress or even marital problems. Ditto apathy and loss of interest in socialising / doing things around the house / pursuing hobbies and interests which were previously enjoyed.

 

[RM3]

Loss of empathy is common in early stage dementia. That's probably why, in the absence of other significant deficits evidenced by a poor score on the standard memory tests, doctors will often attribute changes in behaviour to depression, stress or even marital problems. Ditto apathy and loss of interest in socialising / doing things around the house / pursuing hobbies and interests which were previously enjoyed.

Hi @Violet Jane. I agree and think that I need to try to keep an open mind.
I have learned so much from reading other people’s experiences on here.
I will be interested to hear to doctors thoughts on Friday and I suppose this depends on the results of the blood tests. Thank you x

 

[Spottydog]

If you have your husbands consent for medical stuff you can email in a list of concerns/behaviours beforehand... I did this with my dad and the doctor used it as a subtle prompt list to talk about specific difficulties. Whatever the outcome don't get fobbed off and press for next steps as it's taken a long time to get to this point. Best wishes and good luck to you both for Friday x

 

[Collywobbles]

If you have your husbands consent for medical stuff you can email in a list of concerns/behaviours beforehand... I did this with my dad and the doctor used it as a subtle prompt list to talk about specific difficulties.

Whilst it’s always good to have the other person’s consent if you can, you are permitted to tell the doctor about issues with their health and wellbeing which concern you, without their agreement.

It’s just that the doctors aren’t allowed to tell you anything without the patient’s consent, or unless the doctor has waived their confidentiality (in my Mum’s case because she was deemed to be no longer capable of making decisions in her own best interests).

 

[RM3]

Whilst it’s always good to have the other person’s consent if you can, you are permitted to tell the doctor about issues with their health and wellbeing which concern you, without their agreement.

It’s just that the doctors aren’t allowed to tell you anything without the patient’s consent, or unless the doctor has waived their confidentiality (in my Mum’s case because she was deemed to be no longer capable of making decisions in her own best interests).

Hi @Collywobbles and @Spottydog. Thank you both for commenting.
I think that it would be good for me to send in some bullet points of concerns/examples.
I feel like it’s now or never - if they do fob him off (after the ok last time from an MRI), I don’t think I will ever get him back again.
I do however feel a bit apprehensive of saying too much, as if all ok (which I know would be good - although not explain), it will come back to bite me and I will look a bit foolish and I worry about embarrassing my husband.
The doctor didn’t think a referral would be on the cards when we first went in 2 or 3 weeks ago (because of his age) but then having spoken with him and done the mini test, I could see that her plan of action changed towards the end of the appointment.
I will of course update and do appreciate chatting in here (especially when you all have so much more going on) Thank you x

 

[Violet Jane]

I think that you can't spare your husband's feelings here. You must be direct and blunt about his symptoms and not try to minimise them or explain them away. Push for that other type of scan that someone mentioned; it seems to be more sensitive. I'm not a doctor but there is something clearly wrong. It could be several things but, in the absence of some kind of vitamin deficiency, his symptoms do point to MCI or dementia. I really think that his age is not a factor. He's not even 60. How often are the suspicions of close relatives, particularly spouses or partners, wrong? It would be interesting to know but I bet that it's rare. They are the ones most attuned to the subtle and not so subtle changes in their loved ones. Looking back, my mother was showing signs of dementia for at least five years before diagnosis but I didn't recognise them. She was a lot older than your husband and recently widowed and I think that these things muddied the waters. If I had seen her more often (she lived over an hour and a half away) I think that I would have cottoned on sooner.

The alternative is to do nothing. If he has dementia he will decline and his symptoms will become more obvious. Eventually there will be no doubt.

Whatever you decide to do, please consider getting POAs and wills drawn up - for both of you. If you both do them, it will be more acceptable to him.

 

[RM3]

I think that you can't spare your husband's feelings here. You must be direct and blunt about his symptoms and not try to minimise them or explain them away. Push for that other type of scan that someone mentioned; it seems to be more sensitive. I'm not a doctor but there is something clearly wrong. It could be several things but, in the absence of some kind of vitamin deficiency, his symptoms do point to MCI or dementia. I really think that his age is not a factor. He's not even 60. How often are the suspicions of close relatives, particularly spouses or partners, wrong? It would be interesting to know but I bet that it's rare. They are the ones most attuned to the subtle and not so subtle changes in their loved ones. Looking back, my mother was showing signs of dementia for at least five years before diagnosis but I didn't recognise them. She was a lot older than your husband and recently widowed and I think that these things muddied the waters. If I had seen her more often (she lived over an hour and a half away) I think that I would have cottoned on sooner.

The alternative is to do nothing. If he has dementia he will decline and his symptoms will become more obvious. Eventually there will be no doubt.

Whatever you decide to do, please consider getting POAs and wills drawn up - for both of you. If you both do them, it will be more acceptable to him.

Hi @Violet Jane - thank you for your support. I can completely understand with the various circumstances, why you wouldn’t have seen it sooner in your mum.
I do feel so certain that there is a big change (and not in only one area). I think that I just sometimes think that if I push it, I might find the answer that I don’t really want to know for sure. I will definitely push though because anything else is burying my head in the sand. It feels like such a responsibility- when my husband doesn’t really say that he is worried something is wrong and would like checking.
He would probably be in a very happy place, to finish work (even though he is clinging on to it) and he could watch tv most of the day and have me with him as much as I can around work.
Thank you for the push - I do appreciate that x

 

[Jess2023]

Hi @Violet Jane - thank you for your support. I can completely understand with the various circumstances, why you wouldn’t have seen it sooner in your mum.
I do feel so certain that there is a big change (and not in only one area). I think that I just sometimes think that if I push it, I might find the answer that I don’t really want to know for sure. I will definitely push though because anything else is burying my head in the sand. It feels like such a responsibility- when my husband doesn’t really say that he is worried something is wrong and would like checking.
He would probably be in a very happy place, to finish work (even though he is clinging on to it) and he could watch tv most of the day and have me with him as much as I can around work.
Thank you for the push - I do appreciate that x

Hello @RM3 just caught up with your posts. Sorry you are continuing on this path with your husband the accumulation of situations and your worries continue. I think your right to keep questioning as he seems like his day to day functioning / understanding of his job / lack of compassion on your health all point to a valid question. Be brave don’t bury your head in the sand, I remember sharing a lot at the initial Gp appointment with my husband as I had nothing to lose. My husband was passive and he felt fine - what’s there to worry about ! His mri was not that informative, bloods weren’t showing much either it was the PET scan that was definitive. Go through the process and push as much as you can to get these things done for your sanity and well-being. If he does have a diagnosis it’s good to get plans / LPA in place before capacity changes etc Take care x

 

[hillyjay]

Just to wish you good luck for Friday @RM3 in case I don’t get the chance to tomorrow.
Listen to what the others have said and go for it. You HAVE to tell it like it is from your point of view. I felt exact.y the same as you do when all this started with my husband. Like you I knew something was wrong long before I got him to a doctor, initially under the pretext of us both having a wellness check.

Eventually he was sent for an MRI which showed MCI but nothing really to worry about. It was the later PET scan which showed signs ‘commensurate with the early stages of Alzheimer’s disease‘. I wrote out bullet points too of things which concerned me and had a letter ready to hand to the reception to give to the doctor in advance, (if I was able to ). If you can contact the surgery before Friday, then send them an email saying why you are concerned and giving dates and descriptions of events which suggest a problem.

In the past I’ve also said to the doctor during the appointment that I was sorry but I don’t feel comfortable speaking about my husband in front of him so could we have a few words in private when you’re finished? Then smiled at OH and apologised, saying, if that’s ok with you? He was quite ok about that. He had never said he was worried either but I think deep down he knew that he was having difficulty and in your husbands case you have his difficulties at work (which he is aware of) to support your concerns.

Go for it! xx

 

[RM3]

Hello @RM3 just caught up with your posts. Sorry you are continuing on this path with your husband the accumulation of situations and your worries continue. I think your right to keep questioning as he seems like his day to day functioning / understanding of his job / lack of compassion on your health all point to a valid question. Be brave don’t bury your head in the sand, I remember sharing a lot at the initial Gp appointment with my husband as I had nothing to lose. My husband was passive and he felt fine - what’s there to worry about ! His mri was not that informative, bloods weren’t showing much either it was the PET scan that was definitive. Go through the process and push as much as you can to get these things done for your sanity and well-being. If he does have a diagnosis it’s good to get plans / LPA in place before capacity changes etc Take care x

Hi @Jess2023 - thank you for reading through the posts.
I am definitely taking everything on board and will as you did, make the most from the appointment to get things across. I am going to hand a printout in tomorrow.
If anything came up in bloods, I suppose that will be followed up on first. If not, the. I think I need to make sure that her initial plan to refer for a CT scan is carried through. It will be so hard to get him back again otherwise.
I also in some ways feel that if I don’t push, he is being left in limbo - especially where work is concerned. I think that he feels like he should be carrying on working, at any cost to his well-being. Even a suspected diagnosis I suppose, might be like giving him permission to step back.
At the moment, I think that one thing I should try to do, is get him away from the hours of YouTube videos that he is back on. They almost brainwash him. Mainly American politics and some (I would say) centre right videos.
He believes everything that he sees on them and talks about them as though they are a major part of our life and goes in to great detail of what bad things particular people are doing (such as every minute detail of the American presidency race). It is up to him what he watches but I think it would be better for him to not get so absorbed in these videos.
Thank you once again and hope all is well with you. X

 

[hillyjay]

Has he always been obsessed or interested in American politics and things like that or does it seem as if he’s developing obsessions now? Seems like he’s unaware of the fact you aren’t interested! My OH also began to develop obsessively collecting stamps, making lists of all the DVDS we had - even did a spreadsheet for them. Then carefully amended them every time we got rid of one or got another etc etc. Not much to anyone else really but it was distinctly odd behaviour for him.

 

[Violet Jane]

I'm concerned about your husband's clinginess. If your husband does have dementia then he will become more and more dependent on you and it will be important for you to carve out and maintain some time and space for yourself for your own sanity. After a diagnosis some couples hunker down and withdraw from activities and socialising but that's not a good idea as both the PWD and the carer will become isolated. Down the line, the PWD will need to go to day care and activities without his/her partner and accept care from other people and so it's good for couples to spend some time apart. No doubt, some carers will say that they are content - or feel that its their duty - to spend all their time with their PWD but most carers want and need breaks from caring.

 

[RM3]

Has he always been obsessed or interested in American politics and things like that or does it seem as if he’s developing obsessions now? Seems like he’s unaware of the fact you aren’t interested! My OH also began to develop obsessively collecting stamps, making lists of all the DVDS we had - even did a spreadsheet for them. Then carefully amended them every time we got rid of one or got another etc etc. Not much to anyone else really but it was distinctly odd behaviour for him.

Hi @hillyjay. No not at all. He barely watched any tv (apart from sport) until maybe about a year ago. He is now just really obsessed. Shouts me in all the time to tell me something about Joe Biden for example and he is so engrossed in it all. He must know everything you could know about them all.
Your OH’s obsession with the DVD’s, sounds as though it would be so tiring for them mentally, needing something to be just so and in such order. It seems that OCD is quite a common occurrence?
Thank you once again x

 

[RM3]

I'm concerned about your husband's clinginess. If your husband does have dementia then he will become more and more dependent on you and it will be important for you to carve out and maintain some time and space for yourself for your own sanity. After a diagnosis some couples hunker down and withdraw from activities and socialising but that's not a good idea as both the PWD and the carer will become isolated. Down the line, the PWD will need to go to day care and activities without his/her partner and accept care from other people and so it's good for couples to spend some time apart. No doubt, some carers will say that they are content - or feel that its their duty - to spend all their time with their PWD but most carers want and need breaks from caring.

@Violet Jane. You are not wrong on that point. He will do something like - once in a blue moon go out with our son in law or an old work friend for a walk (although I encourage him to try keep in touch).
I think the hardest part of this need for me to me around, is my dad being fairly recently widowed and living just over 3 hours away. It is hard for me to feel that I can go to see him (he travels down here mostly). We have booked to stay in a place they have near their holiday lodge in a couple of weeks. My dad wants me to go to an awards do with him on the afternoon that we arrive. I haven’t even broached this yet. He won’t stop me - it will make him moody.
A couple of weeks ago, it was my birthday. A couple of days before, I went in to the lounge and I said to him, I really feel like I need to see my dad for my birthday. Not on the day but the day before. I said that I wondered about a quick visit via train in the same day.
He just said, do whatever you have to do - anyway, I’m going to bed now and went. That was that. I didn’t go.
I thank god that when we visited my parents in October - my mum and dad had tickets to see Marty Pellow in Berwick. We were staying in their other place up there that week and they asked if I wanted my dads ticket to go with my mum (this was about a month before we went). I asked if I could decide at the time (I didn’t know how my husband would be about it). A few days before, I said to my husband - I would like to go, he moodily said, just do what you want to do, it’s up to you.
I thank god every day for that night and that decision. I went and had such a lovely night with my mum - I never saw her again, she died of a blood clot instantly 8 days later. I wouldn’t have lived with it had I not gone.
I don’t really know why I’ve just said all that - but it’s good to say it.
Thank you x
**just to add, he’s not a bad person, he just wants my attention. X

 

[leny connery]

Feeling quite frustrated today and a bit cross (not really like me).
I’m really feeling the changes in my husband (all be them barely noticeable I’m sure to most other people - apart from me and I’m 100% sure his colleagues at work). His colleagues have only known him for 6 months, so know no different but I imagine they must think the person, doesn’t seem to match up to the impressive CV. I think it’s because we don’t even know if there is anything the matter (therefore a reason to excuse things).
My husband just seems so less aware of me and my day and all the jobs and responsibilities that I have in comparison to him. The things that seem most important to him, are how his day at work has gone and the latest series he has found Thank goodness weened off just watching endless YouTube videos now - he was watching them so obsessively, that they were almost brainwashing him.
It’s so silly but I think today, I’m most frustrated and sad (I think) over Cereal!
My husband likes his cereal and told me yesterday that he had run out (he would usually not even mention and just have gone to get some). I wonder if I hadn’t have squeezed in a quick shop after work today, whether he would have got any and when. To come home to him in from work and laid on the sofa watching his new series. He’s content, so I wouldn’t let him know how I feel but if I knew 100% that there was nothing wrong, I would be having words - WHAT HAS CHANGED? I will hate myself for this message tomorrow but thankfully - this is anonymous.
I should say - I’m not saying he’s lazy, he’s always been more on the OCD side of being active and busy and pottering. In some ways, it’s nice that he is more laid back but I feel responsible for so much more quite suddenly and I don’t feel much physical or emotional support.
Well I’ve not deleted this message (yet ha) but really needed a bit of a rant. Thank you x

 

[leny connery]

besides finding support, this forum is good for off loading our frustration, sadness, anger, and everybody understands, no judging here, just sympathi. so, rant away, hope it helps. sending you love