Could they have got it wrong?

[oneloopylady]

Soooo confused!! 8 weeks ago, my dad was in hospital, scored 7's, 5's and 6's consecutively on the MMSE test - was hallucinating that he was in a WW2 POW camp, and talked to imaginary people. He talked nonsense, told weird tales and was vacant, sleepy and disinterested in food, drink etc, to the extent that he was being spoon fed and drip fed. He was barely understandable, totally immobile, doubly incontinent. Diagnosed with vascular dementia following strokes.

We brought him to live with us 3 weeks ago, First few days he was vague, confused - thought we had built a new house and didn't realise it was the same house we had lived in for years etc, but none of it .... unmanageable.

3 weeks on - he is alert, he is doing crossword puzzles, trying (but not managing) to do suduko, is vocal, watches the news, and follows it, and sounds perfectly normal. Today when I mentioned to a carer about his dementia, she said 'Oh, has he got a bit of dementia? I didn't know that'. She has been coming for 2 weeks, but I know how she doesn't 'see it' . he seems so ....normal.

He can't tell the time/gets confused with days/has no concept of time and is very very needy and demanding to the point of rudeness - how dare everybody leave him for hours and hours and hours on end... not true - he is never alone for longer than an hour during the day and sleeps from 9 - 9.

He is immobile and is bladder incontinent, and occasionally bowel, but knows when he is doing the latter.

He still thinks we have built a new house but other than those few things, he is relatively normal.


With that said, he was almost easier in the very bad brain times because he was amenable and easy to get along with whereas now he is quite aggressive and demanding which is more exhausting.

Could the tests, and the doctors, all be wrong?? Or do dementia sufferers have weeks of clarity and normality and should I expect him to slip back? or is it the calm before the storm, so to speak?

Trisha

 

[lin1]

Hello Trisha
I know what you mean when you say Dad is harder work now, it may sound horrible of me to say this, but in some ways when my mum was in the late stages some things were easier

Sad to say this but Most Dementia sufferers dont do well in hospital or when they are ill, they can improve after they are better or out of hospital, maybe this is whats happened with your Dad
I remember when my mum had infections or just a simple cold, how it knocked her for six

I do hope you continue to see improvements in your dad

 

[Ding Dong]

My mum has Vascular dementia with Alzheimers and your story sounds very familiar.

My parents lived in sheltered retirement flats with communal lounge and laundry. For two years my mum could barely function inside the flat. She slept all day and roamed about at night. She could not work any machine - the phone, TV, video, microwave etc. She put the teabags in the kettle. She stood at the french window onto the street with no clothes on. She could not recognise sandwiches left in the fridge for tea. We had daily floods of tears and she often hit out and kicked and even bit us.

But outside the flat in the communal areas she was completely normal. Also when she went to the GP, when assessors came to the house, and when a social came, she could function perfectly, could answer any question and behaved like hostess of the year. For two years she convinced the professionals there was nothing wrong and she was treated only with anti-depressants.

Eventually the GP agreed to refer her to the memory clinic but she put on the same performance there. We had a breakthrough when one doctor came to the house and stayed for 2 hours. She started with the performance, after an hour she went through an angry violent period, trying to hit the doctor, then storms of tears, then withdrawal.

My mum is an intelligent woman and loved suduko, cross-words and TV Countdown. In the early stages she seemed able to gather her resources for periods, particularly if there were no real challenges. Her neighbours could not believe it when we told them she had dementia, she behaved so normally in the communal areas.

My mum is now in a care home and I see a range of differences in how people with dementia behave, but you are probably right that this is the calm before the storm. All I can say is I got a great deal of support from going to the local Alzheimer group and swapping experiences there.

Six years on I am still puzzled by how she does not fit the general pattern. I suspect it is a feature of vascular dementia. The care home staff describe it as if someone has flicked a switch in her brain and she is in "normal mode" today.

Just try to enjoy your dad's normal patches.

 

[oneloopylady]

Thank you for your responses, and information. I suppose that because he appears so 'normal', part of me wondered whether the dementia signs he displayed were just left over stroke symptoms and he is recovering, but I do know what you mean, Ding Dong, about them 'appearing normal' for a length of time, especially for visitors etc, and then going down a bit once they no longer have to put on that 'front' as they see it. He does seem to be so very sharp and coherent that I actually wonder if we dreamed all the weird stuff! lol

I suppose, as you say many dementia sufferers get times of clarity, and it doesn't take much to set them back, so I just need to take it as it is for now and hope he doesn't get a relapse in health or UTI's etc because they do seem to make it all much worse.

Also, not sure if anyone else has had this happen - but there is no physical reason, that I know of, why my dad can't walk. But he can't. And physios/OT's don't even try anymore with him, they just gave us hoists etc to manage him, so they must assume that he cannot walk or be rehabillitated yet the condition is not caused by anything physical. Is that normal?

Thanks again.
Trisha

 

[ITBookworm]

Being unable to walk can be as as result of the dementia

FIL was getting more and more unstable on his feet and stopped being able to walk pretty much overnight. No physical change just no signal being sent to his legs telling them what to do At that stage he thought he could still walk and would occasionally try to stand up and then fall flat in his face - literally

It doesn't happen to everyone - I imagine it depends on what part of the brain is damaged when.