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Sunday 24 January 2010

Hereditary Dementia - Would You Want To Know ?

 As you may have read in an earlier post, last year my father was diagnosed with a type of dementia at the age of 62.  I have considered posting about this many times, viewed from many different aspects but each time I have chosen to push it aside.  Having just had my parents staying for a week it is once again in the forefront of my mind and this time it's coming out...be warned this could be a long and depressing post.

My mother had been convinced there was something wrong since before his 60th birthday. The reason his diagnosis took so long was that the type of dementia he has is rare.  Twice he was visited by a psychologist who set him tests which he passed with flying colours.  The explanation my mother was given was that he was just relaxing into retirement and was 'under-stressed', the implication being that without some stress we can't fully function.  Finally he was sent for a brain scan and our fears were confirmed.  Whilst he remains physically very fit and well,  my lovely Dad has already left us.

Dementia, in all it's forms, is a terrible disease and one for which there is very little, if any treatment.  Worse still, relatively little research is being done to find a cure.  If you are unlucky enough to get dementia, Alzeimers is currently your best bet.  There are drugs to delay the progression, and as it's by far and away the most common strain, most of the dementia research is aimed at Alzeimers.  Sadly my Dad doesn't have Alzeimers.  He has Frontotemporal Dementia, a type of pre-senile dementia.  It's called pre-senile as it effects people between the ages of 40 and 65.  One study found the average age to be 56.1 yrs.  I will post another time about the symptoms and how this effects the family as it is quite different to that which people generally associate with dementia.  It can also be an inherited condition with strong links in families.  Whilst we don't know the type my grandmother, great grandmother and great great grandmother all had dementia...

I'm sure you've guessed where this is going.  Will it be me ?  I am 40 already, and Star is only 1.  Have I passed it on to him ?  Should I have another baby and risk passing it on again ?  How long have I got ?  Will I stay well to see grandchildren ?  To see Star marry ?  To see him graduate ?  To see him finish school ?  To see him start school ?

I feel I've been living in the shadow of this since my father was diagnosed early last year.  The initial panic has passed but I think about it at least two or three times a week, sometimes more.  Every time I forget something...what did I come upstairs for ?  What was I saying ? Every time I drop something...one of Dad's early symptoms was clumsiness.  I don't feel as sharp as I was...is this the result of being a SAHM ? or the pregnancy brain loss not recovering ?  Every time something like this happens the thoughts cloud in... is this the start of it ?  I try to keep busy... with Star, with blogging, with tweeting, anything to keep my mind from wandering...and wondering.


One thought that crosses my mind is whether I would be better off knowing.  Do I carry the genetic blueprint to develop this disease?  Or to pass it on to my children ?  I worry about it now, so maybe if I was to be tested I could either breathe a sigh of relief, or start making plans.  But could I live with knowing what was awaiting my family and me ?  At the moment I have decided not to find out as I just think that to know, whilst watching my fathers decline, would be too much.  But I haven't ruled it out forever. 

We have been told that my Dad has, at best, a year of any kind of quality of life, after which he will almost certainly need full time nursing.  So this year my sister and I are trying to ensure that he does as much as possible.  Last week The Daddy  and I took my parents to Cirque Du Soleil and Chinatown, next month my sister is taking them to Mousehole in Cornwall for the weekend.  In  the summer we are all planning a big family holiday and I'm sure there will be other things organised.  It's very difficult to know how much he takes in, or appreciates, but he seems to enjoy these things, at least superficially, at the time...

If you suspected you may have inherited an incurable, untreatable disease would you choose to face the demon head on, or would you run and hide ?


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11 comments:

  1. For me to comment would take up a whole post, so I am going to do one!!

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  2. Its a tough one that isnt it, know and maybe have it affect your outlook or carry on as normal and just hope its not there and isnt happening. I dont know which route I'd choose but if I'm anything like when my grandparents try and hide their health from me I would want to know so I knew what to prepare for I guess.

    Tough one though! I'm sure your Dad is going to have a wonderful year with everything you have planned :)

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  3. I ended up doing a post about it http://themadhouse-themadhouse.blogspot.com/2010/01/genetics-would-you-want-to-know.html, whatever you decide I am here

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  4. I know where you're coming from, as three out of four of my grandparents all suffered from dementia. I can only hope that all the research into the condition leads to better understanding and treatment if/when it hits me. x

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  5. I'm so, so sorry. My father in law has dementia, as did my uncle (in law), but not as young as your papa. I do have a very good friend who is 62 and we think she is slowly sinking into it, but her husband is in denial and won't talk about it nor will he take action to take her to the doc. I was with her on Saturday and it is so distressing to see a person just not connecting with you or the world. It is a very tough decision for you. So far as forgetting things etc are concerned, I think most of us who have had children suffer from this porridge brain due to the complete overload of life/work in general. I have just popped over to read TheMadHouse posting too, and I concur with her that it must be as informed a decision as possible made by you and your guy. I don't feel that anyone can advise you which road to take. Bless you, it's a tough one I know.

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  6. Have tagged you over at mine, hopefully it may cheer you up. http://goonerjamie.blogspot.com/2010/01/favourite-photo-meme.html

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  7. We are in a very simlar situation. My Mother in Law passed away having suffered from this - she started aged 58. Hubby is utterly terrified that he will go the same way - he is 50 shortly.

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  8. What a horrible time for you and your family. I do hope you have a wonderful year creating memories for you all to cherish.

    To answer your question, yes I would want to know exactly what I could be facing. I could make plans, organise my bits & pieces and prepare my family. I'd much rather that than it descend slowly without me realising. Of course it's easy for me to say this as I'm not in your position.

    Whatever you decide it will be the right decision for you and your family. I wish you all the best.

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  9. A very difficult yet thought-provoking time for you. The answers to your questions are in your head, and hard as it may be, only you will be able to make those decisions if the time comes. I say If because you don't really know what is going to happen. But I also say life is for living; live it, enjoy it.

    Me? I'd run and hide. I'm not sure whether that's the right answer or the wrong one.

    But in the meantime, I'm sending you a hug.
    CJ xx

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  10. So hard for you...so many unknowns. I'm sorry your family are facing this. Good luck with your decisions around the subject.

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  11. What a horrible time for you and your family. I do hope you have a wonderful year creating memories for you all to cherish.

    To answer your question, yes I would want to know exactly what I could be facing. I could make plans, organise my bits & pieces and prepare my family. I'd much rather that than it descend slowly without me realising. Of course it's easy for me to say this as I'm not in your position.

    Whatever you decide it will be the right decision for you and your family. I wish you all the best.

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