Where am I?

[Cindy33]

Not sure if I am in the right place here but thought if I write/type stuff down it would make me feel better.

Had a meeting at my Mums home today to discuss her care. Her dementia has got to the stage now where the home feel they need to provide her with 24 hour 1 to 1 care. I had no idea some of the things that were going to be discussed during the meeting and a few of them were completely new "gems" to me. I sat there stunned to hear some of the things my Mum has now started doing. I feel that just when I am starting to get my head round things that the rug is totally pulled from under me and am left floundering.

We were told she had Lewy Body Dementia, however, today the diagnosis was Frontal Temperal Lobe dementia. Does anybody know of any decent websites that I can look at to try and read up on what is ahead? Or, am I best off being blissfully unaware??? One thing that did happen today though - my Mum who I am convinced has no idea who I am sat there and wiped the tears off my face and smiled at me. For a brief moment, she was there!

 

[Amy]

Hiya Cindy,
Welcome to TP. I think the problem is that there are different causes for dementia all producing similar symptoms, or people have multiple causes. There is a factsheet on Frontal lobe which you may find helpful.
My mum has very advanced dementia, but I can still illicit a smile that the care workers don't get. So sometimes I choose to believe that she still, in her centre, knows that she and I are special. Treasure the moment.
Love,
Helen

 

[bel]

Where Am I

Sorry Cindy
dont know of any web sites i have not long found TP
all i can offer is the fact that they after years are saying my hubby has probable Frontal Lobal dementia
But i and others i know feel for you do keep posting
Love Bel x

 

[zed]

different types of dementia

Hi Cindy

Frontal-lobe demtentia is another name for Pick's disease. There is an organisation called the Pick's Disease Support Group. The website is www.pdsg.org.uk They support carer of people with rarer types of dementia such as dementia with Lewy Bodies and Frontal-Lobe. They have a meeting for carers every few months, in London. Next one in September. I'd recommend going, it is very useful to meet other carers and ask questions.

2 years ago, we were told my mum (then 57) had dementia, probably Alzheimer's. After we so a so-called specialist we were told Frontal-lobe, then they said it was vascular. At no point did a doctor who knew anything about dementia tell us in person what kind it was, or what it meant. It was all done through a clueless nurse and a clueless psychiatrist, who knew so little about dementia that he had to look it up in a book.

After we jumped up and down a lot we were finally (18 months later!!) seen by a neurologist who says she has Alzheimer's.

So it is not unusual to have this confusion over diagnosis. It is hard for doctors to tell what type it is. Mostly it is an educated guess based on brain scans and psychological tests.