Thread: just found out mum has dementia-anyone else have relatives with this?

I'm in bits at the moment, found out yesterday that my mum has got dementia. She's only 47!! If anyone on here has any relatives with this, and has any advice on slowing down the disease, and how best to deal with it, I'd be very grateful. Also, this may sound selfish, but I'm now really worried about whether it's hereditary or not, and how I can avoid it.

All I know is, life is never going to be the same again. I live three hundred miles away, and am now faced with deciding whether to move back down to be near my mum, leaving behind my boyfriend, friends and business.

Ever since my favourite writer, Terry Pratchett, was diagnosed with Alzheimers, I've been willing the universe to not give any of my family the disease. Almost anything else would be better. Like mum says, if it was a tumour it could be cut out, or blasted with chemo or whatever, but dementia is so final, it's just a matter of staving it off for as long as we can.

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Obviously no-one can really give you a magic pill to make you feel better about this- especially with your mams age- I expect you feel cheated and angry as well as furious! I hope you can all come together to support your mum and each other while you all adjust to this.
My grandad is currently quite far down the line, though his dementia is a side effect of the drugs he takes for his parkinsons. All I can say is that even though hes had this for years, hes no vegetable, he still has periods of clarity where he knows who each and every one of us is (and were a damn big family! were talking catholic scale!) the only way to get through the times inbetween is to hold onto the good memories you have, and make sure you keep building new ones whenever you can. Im afraid I have no suggestions on treatment because dementia isnt my grandads primary complaint, but though its a stereotype, treasure the time you have with them- put aside the petty arguments and just take every moment you can. the worst thing is always the regrets you have of the times you were too busy to go on holiday together or to absorbed in your own grief to help them through theirs- Be brave, be positive and come on here to vent whenever you need to

this a tough one for you chuck...and at such an early age...really sorry to hear this.

my grandma also has parkinsons and has been deteriorating for a long long time...we take every opportunity to spend time with her especially with our little ones...but similar to yourself we live near edinburgh and she is in hull...long way...my mum moved away from here to be near her and that caused her no end of stress and still does. main bit of advice on that point is to look at compromises for the time being like weekend visits etc if its at all possible as i know my mum now thinks she moved down too soon without looking into all the options...she gave up her house and her and her partner both gave up really good jobs neither of them have found anything equivalent and are living in rented accomodation rather than their own place...

so although the immediate and emotional response was to jack it all in and head down to be with her the reality of it is a different kettle of fish as ultimately she gave up a lot. its such a difficult decision to make and not one anyone would like to be faced with...but i wish you all the very best and to echo an earlier post come on here for a bit of a rant you will always find a bit of support and some kind words...hang in there hun and please accept my very best wishes for both you and your mam...kind regards. ann.xxx
:love:

Im so sorry for you hun my late grandma had dementia for many years, from me being a teenager and i understand how hard it can be

Like others have said it can come and go sometimes we would have days where it seemed nothing was wrong and others she didnt know who we where...it was heartbreaking so i really do feel for you.

I would agree with what has been said and do not rush into giving up everything yet it may be a slow process and you do not wantto have any regrets later on. Spend as much time together as is possible and try to enjoy every minute of it

And as for feeling selfish...dont my nan and mum and myself have all talked about how we felt and every one of us admitted that we where terrified of it happening to us its natural to be concerned

My thoughts are with you sweetie :love:

My heart definitely goes out to you. My grandmother had it, and it was just terrible to see her go from so, so vibrant to not being able to do anything on her own. Do what you need to do, whether it is stay where you are or move back. Try to stay strong!

My heart definitely goes out to you. My grandmother had it, and it was just terrible to see her go from so, so vibrant to not being able to do anything on her own. Do what you need to do, whether it is stay where you are or move back. Try to stay strong!

So sorry, my mum had it as well, it's a horrible condition, however I do have some advice, if she's still only in the early stages go see a solicitor and sort out an enduring power of attorney, you need to do this before she gets too bad, otherwise the courts will eventually sort things out but maybe not to your families best intrests, oh and try and sort out wills, property and so on, if you do so early enough you may just manage to keep the governments hands off her things, now some honest advice, unless you have a big family who can look after her as she gets worse (and she will ) do not move back, my mother was my only family left alive and I was her full time carer for almost 5 years, in the end I had to get her into care, as I told social services if they didn't find somewhere for her ASAP then they were going to need to find somewhere for me as well, looking after someone in the late stages of demensia is soul destroying, you have no life, you get no sleep, you're constantly worrying about one thing or another and you never have any money.

Now as to treatments, they are constantly making advances, however not all forms of the condition respond well to treatments, for instance one tablet they had my mother on definately helped slow down the memory loss problems, but had the side effect of making her more agressive, just get the best help you can and hope for the best.

By the way dementia is rarely the cause of death (although as a degenerative disease it can be) most likely it will increase suseptability to other conditions, whilst your mother is still in the early stages of dementia it's worth talking to her and finding out if there's a point at which she wouldn't want to be resucitated, my biggest regret is that about 11 months prior to her death she had a major stroke, because I was there I called an ambulance and after 3 hours in resusc she survived, but those last 9 months were dreadful, in my heart I know she would have prefered to not have been bought back

On the plus side early stage dementia may not be too bad, people are often just a little more forgetful or may seem to remaniss a little more, if she is not on her own she should certainly be able to manage for a while, being on her own however can lead to problems, most often its things like forgetting to turn off the cooker or leaving doors open when she goes out, or in later stages wandering off looking for someone or something and just vanishing.

If I can give you any advice please feel free to PM me

Very sad news - nothing to say that could make that any better - Not experienced anyone having it in my family though I saw some childhood friends struggle with their grandmother's situation - very sad to watch - she died before I left school. Some of Pratchett's One of my favourite authors too) coverage of his Alziemer's through documentaries and interviews has been very good and there will be lots of help groups, advice groups and hopefully, friends around to give you all the moral support you could wish for.

This is something i have battled with in my life as well... I read every response.

It's not selfish to worry about the possibility of developing dementia yourself.... i have to admit, one of my biggest fears is mental illness. My family is riddled with schizophrenia, dementia and personality disorders. When i was 19 i lived and cared for my grandmother with schizophrenia for a year.

I agree with Desert Orchid, you can vent to us all you need babe. And White Knight's suggestion about getting legal matters sorted out now. As difficult as that sounds. It will make everything easier in the end. And i've heard and seen too many horror stories about some family members taking advantage of mentally ill relatives. And this way your mother will know she has made the decisions she wants, not what the disease wants later down the road.

I think unless your mother is too deserted where she is, perhaps you should try to arrange something that will allow you to be there. But dont ruin your life... it is important you are healthy and have down time as well...otherwise you will start to resent your mother, and then no one is happy. Perhaps you can arrange with other family members a shared duty to care for her???... You can stay with her for awhile and then someone else can take over and so on. Or develope a visiting pattern.
Now is definately a good time to visit. It doesn't sound like she is far-gone into the illness, and i'm sure she will be fine for a long time with the right threapy. But spend some time with her now. I would even suggest having some councelling sessions together, it will bring you closer and allow you both to express what you need.

Things that can be done to keep her illness at bay? I would look into various sources of treatment and threapy, and research them, consider the pros and cons. Western Medicine, Naturapathic, Spiritual healing, Councelling, Massage...etc. etc. I'm not knocking Western Medicine, especially with something this serious, but i do have some hang ups.

As for yourself, your own mental health and fears of mental illness. Take care of yourself! Especially now while you're young, you can prepare and strengthen your body for old age. Take lots of antioxidents and the reccomended dose of essential fatty acids (Omega's) and vitamins. Don't drink too much. Deal with stress in healthy ways. Do things that make you happy. I'm 24 and i treat my body the best i can, keeping in mind one day what i do now will determin my overall health when im older.

Be strong my darling. This is life. It's not fair and its cruel to us at times. But we need to do- what we need to do to get by. And still be able to smile. That's whats important.

*BIG HUGS AND X'S*

~Miss la Muse

I am so sorry for you and your Mum, I know how it feels to live with someone who has dementia. My nan had it for many years and it was very hard to see her go from a lady so full of life, to somebody living in what seemed to be a different world.

I might be wrong, but I though that there was lots of new drugs on the market to help dementia suffers. I thought that if caught in the early stages, then it can be stopped in its tracks. The drugs cant get back what is already lost but can stop it progressing further.

Have a look on some websites for which drugs these are, and Im sure you or your Mum's GP can inform you.

I hope this helps in some way.

Claire