Advanced mixed dementia diagonosis - but i'm confused

[MissDiane]

This is my first post and here so I would firstly like to say how glad I am to have found this site as I feel rather alone with mums diagnosis and feel I don't know where to turn to ask questions about it.

To give you some background, mum received a diagnosed of "advanced mixed dementia" (Alzheimers and vascular) in February this year. Prior to this she had memory problems for approx 2 years maybe longer.

To receive such a diagnosis was a big shock, that the condition had progressed to this point. It took us about 6 months long to get the apt to the memory clinic which was frustrating. I took the news badly and have not really been able to face up to it and be strong until recently, but I struggle daily with it.

Mum keeps asking how long has she got and what is going to happen? I've read bits on the net and gleamed about 7 years from start to finish but I really haven't got any idea at all and no one has explained this to either her or me.

Mum is on Ebixa which has helped but things are deteriorating (mobility and speech).

I know its different for everyone but would appreciate some idea of where we are at on the timeline.

I have looked up advanced dementia symptoms and I would say this is actually incorrect as she does not meet nearly all of the criteria. Should I challenge the diagnosis now or is it pointless? I just wish they had got it right as I have been very depressed since getting the diagnosis and have basically wasted the last 6 months by not seeing mum as much because I couldn't cope with it all.

Where can I go for advice? Who can explain the condition to mum? How long can someone have Alzheimers and Vascular Dementia?

Sorry for the long post but this is the first opportunity I have had to ask questions.

 

[artyfarty]

Hi and welcome!

I am no expert but as I understand it, the progression of AD can vary enormously from person to person so it is difficult to say how 'far along' somebody is. Have you read the fact sheets here: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=133

I found them really useful.

Sorry I can't be more informative but I'm sure there will be someone along soon who has more useful things to say!

 

[FifiMo]

Hiya and welcome to Talking Point.

The answer to your main question is that no one knows how long someone might have post diagnosis as no two people have the same journey with dementia. For this reason we normally resort to dealing with issues or challenges as and when they arise. The object of the exercise being to keep the person as safe and happy and contented as possible. As you have already discovered, there are a lot of facts and figures out there which are not relevant to your mum. For this reason, it is not worth challenging the diagnosis as the main purpose has already been achieved as your mum has been given medication. The other purpose is that it gives access to any support services that your mum might need.

As to your mum understanding what is likely to happen, my personal view is that I would tell her what she needs to hear in order to avoid causing her anxiety or distress. Some people just equate the diagnosis to memory problems and leave it at that. Tell her the medication is to help with that. If the truth be known then there is not a lot else that you can tell her as you do not know how things might develop. One thing I would perhaps ask the memory clinic is whether the deterioration in her speech/communication is related to the Exelon that she is on. I know it affected my mother's speech but helped in so many other ways that we accepted this.

Don't be hard on yourself. Your reaction is a common one but now the shock is subsiding you are asking the right questions and more importantly are providing your mum with the support that she needs. The challenge for you will be finding innovative ways to help your mum circumvent any challenges that develop. That is where people on here can help you and share their experiences with you. In that regard you are not alone.

Fiona

 

[AlsoConfused]

Welcome to TP. For a lot of us I think the forum's always the place we go to when baffled, worried or even just in the need of a "chat".

We've been talking recently about "stages" in dementia and agreeing there's so much variation in the disease's progress the idea of "stages" often doesn't make much sense.