Agreed to see the doctor again.

[maggie6445]

@RM3 , whilst we were waiting for my OH diagnosis he would say how forgetful he was ,how he couldn't get things right anymore. He was aware there was something not right . He would say he was getting dopier and dopier. He also used to say his head hurt. I'm not sure in what way because he would say different and heavy! I secretly wondered if pwd could feel the brain shrinking!

It took nearly a year to get his diagnosis,it was lockdown, and by the time he had it he had stopped acknowledging his problems and hasn't ever mentioned it since! I mentioned it initially but he showed little understanding or maybe his denial.

Do you think when your husband tells people he is looking for reassurance that he's ok . You know " don't be silly , you're fine" type of response or is he preparing folk because he knows something isn't right?

Try not to overthink. He's obviously changed and you need to know why . Hope you don't have to wait too long. X

 

[Fugs]

Hi. I just wondered if others (pre diagnosis) have had the experience, that their loved one starts talking to people (everyone in close contact and not so close), explaining that they have got something wrong with them and they are undergoing tests?
My husband over the past week or so, has been talking really openly to people, saying that he is having struggles and is having tests. He sounds resigned to being diagnosed and I worry that it is making him worse.
Like yesterday morning for example, when we were dressing, he was half laughing and saying, what am I doing (when he was only half way through dressing) and losing things like wallet and keys but then saying his heads going.
We went out for dinner with my dad and when I returned from the bathroom, he was in full conversation about his difficulties and that he is just hopeful of a diagnosis and then he can get treatment.
It really does concern me that by pursuing this, we are manifesting it perhaps.
Would it be usual for someone to suddenly start talking (pre diagnosis) about this and be so ok with it. Would he have all of this insight (I know his insight covers memory issues and trouble problem solving, not personality changes, like lack of empathy).
I almost feel like I want to say to him, look, let’s put this to the back of our minds now, most of this is probably just you anyway and a bit of getting older.
It would be good to know if others have experienced this or whether this level of insight, would likely me it may not be anything more than some normal struggles x

@RM3 You can't fake or manifest the physical changes in the brain which an MRI or PET-CT scan can pick up. I am endlessly surprised by how much my wife can do, vice how much she can't. I guess it depends on which part of the brain is un (or less) impacted, compared to what is. (Just prior to the first Memory Clinic appointment I was beginning to wonder if my wife was putting on an act!). It is a very odd disease.

 

[RM3]

Thank you both for replying @maggie6445 and @Fugs. It is good to hear experiences. I think it just feels strange to be talking to people about it and really crossing over from me saying to my OH that I have concerns, to him now saying and telling people that he thinks something is wrong.
@maggie6445, it could be that he is looking for people to say that they don’t think there’s anything for him to worry about.
I did say to him this morning that maybe we should try and be a bit more positive and not think too much that there is something wrong. He just said that it still is what it is and that it does not worry him.
@Fugs - it is a very odd disease isn’t it. I think that the earlier stages are so hard to compare because the symptoms seem so varied from person to person. Maybe what you say about questioning an act prior to memory clinic, I think that is maybe how it’s felt a bit recently.
I suppose it’s his experience really (whatever it is) and I should try let him go through this in his own way. He certainly almost seems perkier, talking openly about it.
Thanks again x

 

[maggie6445]

Thank you both for replying @maggie6445 and @Fugs. It is good to hear experiences. I think it just feels strange to be talking to people about it and really crossing over from me saying to my OH that I have concerns, to him now saying and telling people that he thinks something is wrong.
@maggie6445, it could be that he is looking for people to say that they don’t think there’s anything for him to worry about.
I did say to him this morning that maybe we should try and be a bit more positive and not think too much that there is something wrong. He just said that it still is what it is and that it does not worry him.
@Fugs - it is a very odd disease isn’t it. I think that the earlier stages are so hard to compare because the symptoms seem so varied from person to person. Maybe what you say about questioning an act prior to memory clinic, I think that is maybe how it’s felt a bit recently.
I suppose it’s his experience really (whatever it is) and I should try let him go through this in his own way. He certainly almost seems perkier, talking openly about it.
Thanks again x

@RM3, it sounds if you your husband is accepting of his situation which I think is good. He's right,it is what it is. If it's something that can treated then good and if not then a positive attitude will give you both the best life.
Whatever the diagnosis, live everyday as if it were your last and enjoy life. None of us knows what's ahead!! 😊😊

 

[RM3]

@RM3, it sounds if you your husband is accepting of his situation which I think is good. He's right,it is what it is. If it's something that can treated then good and if not then a positive attitude will give you both the best life.
Whatever the diagnosis, live everyday as if it were your last and enjoy life. None of us knows what's ahead!! 😊😊

@maggie6445 - positive words, thank you 😊 x

 

[Collywobbles]

PWD can get a topic stuck in their mind, and this is what preoccupies them for a period of time. My Mum has done it with domestic things - for example, discussion about hanging the lounge curtains went on for months, as did “having all the trees chopped down” (the tree surgeon made their annual visit and trimmed some dead branches).

I don’t think talking about tests and diagnosis is making anything worse. Rather, it’s a symptom. All the best for those tests.

 

[Sarasa]

I agree I don't think you talking about it is making it worse, in fact in think it could be a good thing. My mum refused to consider that she was having difficulties, any problems were due to someone else. My mother in law, on the other hand, might have been open to discussions but the family tended to sweep her talk about maybe she needed more support under the carpet. If we'd talked to her about them we might have got her some help earlier.

 

[canary]

Hello @RM3

collywobbles is absolutely spot on - its a symptom of dementia, not a cause and its really common for people with dementia to get "stuck" on a topic which will then pass and not mentioned again.

My OH recently became obsessed with the idea that he was fat and needed to lose weight - hes not; in fact he is already losing weight. He stopped eating meals and then decided he needed exercise and kept wanting to go out for a walk, by himself with no walking aids, even though he cant walk very far and I take a wheelchair when we go out. I was really very concerned about this, but it has now passed. His latest stuck topic is listing all his problems to everyone he meets who asks how he is - so quite similar to your OH. I dont think my OH is looking for reassurances. Usually he is unaware of his limitations, but he has obviously had a lucid moment and this thought is just going round and round his brain. I assume that it will pass too

 

[RM3]

PWD can get a topic stuck in their mind, and this is what preoccupies them for a period of time. My Mum has done it with domestic things - for example, discussion about hanging the lounge curtains went on for months, as did “having all the trees chopped down” (the tree surgeon made their annual visit and trimmed some dead branches).

I don’t think talking about tests and diagnosis is making anything worse. Rather, it’s a symptom. All the best for those tests.

Thank you @Collywobbles. That’s interesting to know. It does feel like a fixation on discussing it. I think perhaps it is me that feels a bit uncomfortable him talking with others as though it’s real. Thank you ☺️ x

 

[RM3]

I agree I don't think you talking about it is making it worse, in fact in think it could be a good thing. My mum refused to consider that she was having difficulties, any problems were due to someone else. My mother in law, on the other hand, might have been open to discussions but the family tended to sweep her talk about maybe she needed more support under the carpet. If we'd talked to her about them we might have got her some help earlier.

Thank you @Sarasa. I suppose it comes back to my reply to @Collywobbles - that maybe it’s me that feels uncomfortable talking about it together and/or with others, I suppose making if seem more real.
I think it’s maybe that you want enough awareness that they will seek investigations but it’s another letting it become part of ‘normal’ conversation.
It’s not easy is it. Thank you ☺️ x

 

[RM3]

Hello @RM3

collywobbles is absolutely spot on - its a symptom of dementia, not a cause and its really common for people with dementia to get "stuck" on a topic which will then pass and not mentioned again.

My OH recently became obsessed with the idea that he was fat and needed to lose weight - hes not; in fact he is already losing weight. He stopped eating meals and then decided he needed exercise and kept wanting to go out for a walk, by himself with no walking aids, even though he cant walk very far and I take a wheelchair when we go out. I was really very concerned about this, but it has now passed. His latest stuck topic is listing all his problems to everyone he meets who asks how he is - so quite similar to your OH. I dont think my OH is looking for reassurances. Usually he is unaware of his limitations, but he has obviously had a lucid moment and this thought is just going round and round his brain. I assume that it will pass too

Thank you @canary. I had wondered whether your husbands decision to not eat lunch had or would pass. It presents such complex and varied symptoms doesn’t it.
I think the fixation sounds to be what he is doing and although I’m finding that a bit difficult, it is good that he is positive about it.
I had intended on asking for him not to be told what it was - if it was this. I almost feel at the moment, that he would be a bit disappointed if he didn’t get a diagnosis. He is hoping for an explanation and mostly, to tell everyone at work, so that they can make allowances for him to carry on.
Im glad your husband has started eating more again but as you say - it’s on to the next thing then. Thank you ☺️ x

 

[RM3]

The strangest thing just happened too - we are staying at my parents’ holiday home at the moment. We know it very well. My husband just pulled in to next doors drive (they do look alike (although that is the left side of a semi).
We also just got a text to say that the NHS CT scan is next Monday, so I can cancel the private one (which was the same day). That’s just been 3 weeks then, and the memory clinic should be a couple of weeks after.
They have been very quick x

 

[maggie6445]

The strangest thing just happened too - we are staying at my parents’ holiday home at the moment. We know it very well. My husband just pulled in to next doors drive (they do look alike (although that is the left side of a semi).
We also just got a text to say that the NHS CT scan is next Monday, so I can cancel the private one (which was the same day). That’s just been 3 weeks then, and the memory clinic should be a couple of weeks after.
They have been very quick x

So pleased you have the scan date. Things should progress quickly now.

 

[Bevhar]

The strangest thing just happened too - we are staying at my parents’ holiday home at the moment. We know it very well. My husband just pulled in to next doors drive (they do look alike (although that is the left side of a semi).
We also just got a text to say that the NHS CT scan is next Monday, so I can cancel the private one (which was the same day). That’s just been 3 weeks then, and the memory clinic should be a couple of weeks after.
They have been very quick x

That’s brilliant you have a scan date You should get some answers soon Did you have to tell him he was in the wrong drive or did he realise Hope you enjoy yourself while your away xx

 

[RM3]

That’s brilliant you have a scan date You should get some answers soon Did you have to tell him he was in the wrong drive or did he realise Hope you enjoy yourself while your away xx

Hi Bev - I hope you are well.
I had to tell him. He went past our drive and I thought he was going to maybe reverse in but then swung into the next doors drive. I stopped him as soon as he had started pulling in - just a reaction, I said, what are you doing, this is the wrong one and he just looked at the houses and said oh god yes, and pulled back.
Been a lively break so far thank you. Nice to be away and to catch up with my dad.
Hope your bank holiday weekend has been nice so far x

 

[RM3]

So pleased you have the scan date. Things should progress quickly now.

Yes thank you. They have been very efficient, I think we have been lucky.
Hope you’re doing ok x

 

[Sirena]

Hi RM3 I've just read through your thread. I'm so sorry to hear about your husband. I related to a couple of your recent questions as they applied to my mother.

As you say, it is unusual for people to acknowledge they have memory problems, and even if they are told they of course inevitably forget. However my mother knew quite early on, and she actually went to her GP off her own bat and asked to have memory tests. She also discussed it with friends/me. That was during the early phase, she lost that insight later on.

Best of luck with the scan. My understanding is that it is mainly used to exclude other diagnoses like a brain tumour or stroke. So basically if the behaviour is not due to any other visible issue, it's dementia.

 

[RM3]

Hi RM3 I've just read through your thread. I'm so sorry to hear about your husband. I related to a couple of your recent questions as they applied to my mother.

As you say, it is unusual for people to acknowledge they have memory problems, and even if they are told they of course inevitably forget. However my mother knew quite early on, and she actually went to her GP off her own bat and asked to have memory tests. She also discussed it with friends/me. That was during the early phase, she lost that insight later on.

Best of luck with the scan. My understanding is that it is mainly used to exclude other diagnoses like a brain tumour or stroke. So basically if the behaviour is not due to any other visible issue, it's dementia.

Hello @Sirena. Thank you for your reply. I am sorry to read that you have been/are going through this, with your mum.
That is helpful to know - I had wondered if this awareness may be a sign that it could be less likely.
That is also interesting to think of the scan as also ruling out any other explanations (I knew the blood tests were).
Thank you again. I always find it so helpful chatting on here. X

 

[RM3]

Sorry to put a running commentary on of small things (just helps to have somewhere to put it and also to look back on).
Whilst we await the upcoming tests - I find some of the little things can feel quite upsetting. Having better weather today on our holiday, we thought we’d have a good venture out. We visited a market town nearby first and had a lovely stroll around. We then drove on to the next little harbour for a walk. We passed a street and my husband said, that’s a common street name, he said, where were we a few days ago and we watched volunteers planting flowers next to a monument. I said that we had just watched this a little while ago in the previous town (the street was apparently the same name). He pondered what I’d said for a moment and then asked - was that really just today.
I don’t want to lose my husband in this way and I so hope that these things are just a bit of a foggy head and my hyper awareness of even small things like this. X

 

[Bevhar]

Sorry to put a running commentary on of small things (just helps to have somewhere to put it and also to look back on).
Whilst we await the upcoming tests - I find some of the little things can feel quite upsetting. Having better weather today on our holiday, we thought we’d have a good venture out. We visited a market town nearby first and had a lovely stroll around. We then drove on to the next little harbour for a walk. We passed a street and my husband said, that’s a common street name, he said, where were we a few days ago and we watched volunteers planting flowers next to a monument. I said that we had just watched this a little while ago in the previous town (the street was apparently the same name). He pondered what I’d said for a moment and then asked - was that really just today.
I don’t want to lose my husband in this way and I so hope that these things are just a bit of a foggy head and my hyper awareness of even small things like this. X

I understand completely it is upsetting But if he has got Alzheimers there is medication available My husband says & does odd things but I still love him dearly I went to
A carers meeting today & there were people from our Monday group there it was lovely they were all saying what a happy person my husband is & one lady said how she loves seeing me & my husband together this meant a lot to me I’ve also had a book called contented dementia recommended for me I remember only too well my husband saying unusual things & trying to ignore it But all
I can say it was almost a relief once we got his diagnosis as I knew what we had to deal with Until you’ve had all the tests done try not to worry as it won’t change things it is hard I know only too well But from what I’ve read
people who have a deep love that won’t change things will be different but you can adjust with help If it is Alzheimers then i
Would really advise joining groups they have really kept me going After the weekend when I wasn’t feeling well i decided I needed to start get out with my friends & it’s helping a lot Off to see a friend tomorrow while OH is out with his brother Try & enjoy your holiday Not too long to find out one way or another sending love & hugs x