What to expect?

[netsy22]

Does anyone else's relative have a diagnosis of mixed dementia?
My mum aged 87 has a diagnosis of mild/moderate dementia, she may have had a couple of mild strokes, and the part of the brain that deals with complex tasks has restricted blood flow.
The types of dementia were not specified, but the doctor said it wasn't Alzheimer's.
She has memory loss and confusion and is unable to go out on her own or even walk around the building where she lives because of fear of getting lost. She cannot learn to operate a mobile phone or washing machine but uses a simple remote and microwave. Physically, she has no mobility problems apart from slight balance issue. She keeps herself fairly clean, still puts make up on, puts contact lenses in and has her hair coloured. She can do crosswords.
But not having a more definite diagnosis means I don't know what to expect. She has been fairly stable for 18 months or so with a couple of blips when faced with too much happening. All the information out there is based on Alzheimer's or other known types of dementia. Where can I get more information?

 

[Beate]

I could understand it if the doctor wasn't sure what type of dementia it is. But if he said mixed dementia, he must have had some idea what the components are, especially if he says he is certain he can exclude one common type. The most common type is Alzheimer's mixed with vascular dementia, so I would go back and insist he tells you the exact diagnosis or make further tests.

 

[Otiruz]

Hello Netsy22,

My mother had a diagnosis of mixed dementia in 2013. TBH my I think it was complicated by a previous illness of meningitis some 57 years ago. This resulted in a personality disorder. Dad died in 2012 and Mum went downhill after this. When my Mum was diagnosed I was finding it difficult to know whether she was just getting more difficult (argumentative), more liable to OCD behaviours - she was hoarding, excessively 'shopping' - over 100 trays, 30 something washing baskets, carrier bags etc etc but couldn't decide on buying herself new shoes (she was desperate for), or clothes.... her GP referred her to the memory clinic and the detailed testing at the MC made the diagnosis relatively easy. During a recent spell in hospital I was told she would be given a CT scan - then I was told there wasn't any point as she clearly had dementia. What type? What can we do? - Apparently nothing - I was advised that Mum did not have 'mental capacity' and therefore could not be discharged back home without a comprehensive care package. Actually this was a godsend to me as I've spent 3 and half years trying to help someone who refused to recognise anything was wrong. I have read elsewhere on TP that the progress of PWD can vary hugely so I'm hoping someone can help you more than I have been able to. Mum's 81, she manages word find games but not crosswords, cannot follow a TV program, started putting on the kettle for a cuppa and would wander off forgetting she had put it on. She forgot her medication, forgot to eat (but not buy) food, could not cook but could heat microwave food then recently could not remember she had put food in the microwave. I am learning that every PWD has a different journey and that TP is a mine of information, support and understanding.

 

[stanleypj]

The whole business of diagnosis is fraught and I wonder if 'mixed dementia' is becoming the preferred option when the medic doesn't really know? If so, it would be better if they 'came clean'. My wife was seen by a leading expert who was quite comfortable telling us, for over 10 years, that he couldn't really say what sort of dementia she had. I found that a little bit reassuring and we carried on living as normal a life as possible - still do. If we'd been told early on 'it's this' and 'this is what you can expect' I'm not at all sure that we would have got as much out of those years as we did.

By all means try to get a clearer diagnosis, but I'd caution against accepting anyone's version of what to expect. If you try to cope with whatever comes along, even the unexpected, insofar as you are able you'll probably end up less troubled.

 

[Kevinl]

My wife was diagnosed with "Early onset, mixed, atypical Alzheimer's" what does that mean exactly? I never bothered pushing it as (to me, others I know feel differently) why would it matter? It's the reality of the situation I have to deal with and as they say on here everyone's different. If I did find out exactly what type it was the "everyone's different" rule means that I'd be no further forward, there are no real stereotypical patterns just a set of things that may or may not happen and it's almost impossible to predict what will and what might happen.
I'm no expert but I've just got back from another 2 hour visit to a secure assessment unit (visiting my wife) where I've visited pretty much everyday this year, so I get to see a lot of people with all types of dementia and AZ, all I can say is you have to treat people the way they are not by their diagnosis.
There is no map or plan with "age related senility" what has happened to others may not happen to you and what didn't happen to them may happen to you.
My (late) mother had a similar diagnosis to yours but what happened to me (I feel) won't tell you anything useful, I let her get on with her life with support until the day I decided she was a possible danger to herself then moved her in with me, it was just a slow steady decline, everyday a little more of her went until she died from other causes. But that's no guide to what may happen to you.
K

 

[Beate]

While it is true that everyone is different, there are certain traits and rates of deterioration for the different types, why else would there be fact sheets for a lot of different types on here? I therefore cannot blame someone in wanting to know more about what they are dealing with, as long as they understand that every journey is different.

 

[stanleypj]

I don't know that fact sheets tell you what to 'expect' Beate. They can be useful in letting you know what might happen or what is likely to happen. There are often posts where people write about their puzzlement that the symptoms they observe are very different from what they had expected. Far too often, if TP is anything to go by, people assume that certain things will happen, the most obvious example being the belief that a PWD will eventually be unable to recognise their loved ones.

 

[Quilty]

If the doctor is talking about strokes and blood flow then vascular dementia is one of the types diagnosed. The other is probably Alzheimers since its the most common. I think if it was anything other than this the doctor would have told you.

My Mum had this mixture and managed to be fairly stable for 5 years before there was a serious decline. Vascular dementia causes step change decline while alzheimers is more gradual.

everyone is different and its impossible to know what to expect. If I were you I would look up symptoms as they appear. I worried so much with how I would cope when Mum no longer recognised me - it never happened and she knew me right up to the end.

Take it a day at a time and face the problems as they show themselves. Its impossible to second guess dementia Im afraid.

Big hugs. I know its very hard.
Love
Quilty

 

[netsy22]

Grateful for replies

Thanks for all these replies. Yes I appreciate that everyone is different and I must try to deal with whatever arises. I am finding it difficult to deal with it. Is it awful to say I wish I knew how long? At the moment I don't feel I can cope with another 10 years.

 

[stanleypj]

I understand what you are saying. But, of course, if she did survive for 10 years, which seems very unlikely given the circumstances, you would have some choices about how much the coping would be your responsibility. There are other options.

I still think that, at the moment, you would do well to concentrate on being positive about the impressive things she can still do for herself and encourage her to continue doing them. You cannot do much about the future until it arrives. I assume you have already got Power of Attorney?

 

[Otiruz]

Netsy22

It's probably a fundamental need to know 'how long', 'what next', 'what should I do and when'? Most of us like to be in control of situations where our loved ones are concerned, especially when they need so much help. I was terrified of making the wrong decision so for too long I made no decisions. My method of coping was initially to keep worrying about absolutely everything and feel anxious most of the time. I have gained so much knowledge on TP and have read and reread anything remotely helpful/useful in order to make sense of my and my Mum's situation. I hope you feel you can gain the same support.