Awaiting diagnosis.

[MsJC]

My 75 year old husband had his appointment at the memory clinic this morning. As suspected he has early stage dementia. His first assessment was 18 months ago and no real problems were identified. Today his score is significantly reduced. Now waiting for a brain scan as the doctor suspects it might be Lewy body dementia as he has a slight tremor in his right hand and stoops a bit when walking.
I cared for my mum who had vascular dementia and it was one of the hardest things I’ve ever had to do. She passed away 7 years ago. My sister in law has advanced Alzheimer’s. I feel quite overwhelmed.

 

[SeaSwallow]

@MsJC My heart goes out to you, you have had to deal with dementia so many times. My husband was diagnosed with Lewy Body three years ago, the early signs were probably there for about two years before that. Although his symptoms have increased recently he is still able to look after himself, is self aware (knows that his condition is getting gradually worse), and enjoys reading and watching YouTube videos. His joy is planning work in the garden though we get someone to do most of the work.
Try to take each day at a time, if you do not have one already ensure that you have a POA in place.
Keep posting on this site if there are specific questions you need answered. I have found the help on here invaluable.

 

[Shedrech]

Hello @MsJC
A warm welcome to DTP

So sorry that so many of your family have been affected... no wonder you are feeling overwhelmed

I hope you have some support... do ask about this when you see the medics

And now you've joined us here do keep posting, sharing experiences does help

 

[MsJC]

Hello @MsJC
A warm welcome to DTP

So sorry that so many of your family have been affected... no wonder you are feeling overwhelmed

I hope you have some support... do ask about this when you see the medics

And now you've joined us here do keep posting, sharing experiences does help

My husband has had the result from his DAT scan and there is no evidence of ‘Parkinson’s syndrome’ so Lewy Body has been ruled out. The scan revealed he has dilated ventricles in the brain so he’s now waiting for an MRI scan. I try not to google too much but my search returned ‘ normal pressure hydrocephaly’. I have no idea if this is what my husband has but am wondering if anyone has any experience of this condition.

 

[Grannie G]

normal pressure hydrocephaly’.

Hello @MsJC

This is what my father had. He died in 1971 and then, there was no mention of dementia even though I now realise it was how it developed.

However that was a long time ago, [50 years] and diagnosis and treatment may be very different now. My father had stents inserted to drain the fluid.

I understand how tempting it is to search the internet for answers but really we as lay people can be guilty of reading too much into our findings.

I can only hope you will be reassured by your husband's doctor that treatment has developed in 50 years.

 

[MsJC]

Hello @MsJC

This is what my father had. He died in 1971 and then, there was no mention of dementia even though I now realise it was how it developed.

However that was a long time ago, [50 years] and diagnosis and treatment may be very different now. My father had stents inserted to drain the fluid.

I understand how tempting it is to search the internet for answers but really we as lay people can be guilty of reading too much into our findings.

I can only hope you will be reassured by your husband's doctor that treatment has developed in 50 years.

Thank you for responding. It is so tempting to be ‘Dr Google’! Easy too to make symptoms fit when searching for answers. I just have to be patient and wait for the scan. What I read stated NPH as the only ‘treatable form of dementia’. I’m realistic enough (I hope) to realise that treatable would be shunts too drain the fluid and not some overnight miracle. I don’t know if this would stop the progression of the dementia for a while. And it’s at this point that I tell myself to stop searching online and speculating. I think my biggest problem is learning to be patient and accepting. I know I’ll need to be both of those things.