What would you do?

[Dianne]

Hi, I don't know if i should be asking this question on this forum and forgive me if i shouldn't.

My Dad had AD and his Dad had signs of it but was not diagnosed. My Grandads (Dads Dad) sister also showed signs but wasn't diagnosed, now her daughter had been diagnosed with AD and to be honest with so much in the family I am worried that this may be where I am heading.

My Husband says he understands why i'm worried but that I shouldn't be as i will be OK but I remember all the decisions my mum and I had to make and don't want my kids to have to do the same. I've heard there's a test to see if it's genetic but then do I really want to know? I suppose what I'm asking is; is there any one else who seems to have a history of AD in their family who is finding it difficult, worrying over what may happen. I know I'm probably worrying over nothing but I can't stop. I'm torn between trying to find out if it may be genetic and just making a living a will (so that they wouldn't have to make any decisions) and trying to carry on as normal.

Should i speak to my doctor or is there some literature any where which may help?

Sorry to post this but I can only speak to my Husband about it and he just says 'you'll be OK, stop worrying'.

Thanks
Dianne

 

[Diane Scott]

I read your post and felt so sad that you have all these things to worry about. I can see the dilemma about having the test - and would you really want to know?
I think the wisest thing for you to do at the moment is to go and talk the situation over with your GP. I have found the Alzheimers factsheet for you - hope I've done it right and you are able to access it O.K.
http://www.alzheimers.org.uk/Facts_about_dementia/Genetics/index.htm

 

[KarenC]

My mother has dementia, so did her mother, as did *her* mother (my great-grandma). At least one of my grandmother's sisters also has dementia.

Do I think I have a better-than-average chance of getting it? You betcha. Is that a scary thought? You betcha. I worry about what my husband may have to deal with, reading posts by Brucie and Norman and other spouses here, and hearing from my great-aunt's husband who is in his mid 80s and caring for Aunt at home.

My doctor says in the next few years he expects there to be better tests (e.g., a simple blood test) for genetic markers. I don't know the details. He is also in favor of getting an autopsy on my mother when she dies so we know what kind of dementia she has, as that information may be useful in the future when more it known about the disease.

Whether or not to get any tests done is a difficult personal decision. I haven't gotten to that point yet. I agree with the advice about talking to your GP to see what the benefits might be. We all hope that treatments if not cure will improve over the next years. In any case, make a living will and talk to your family about what kind of treatment you'd want, not just in the event of getting dementia but any other situation where you might not be able to decide for yourself at the time.

Karen

 

[angela.robinson]

hi dianne ,would it help if you knew .i think you should make a list of for and against ,what you would do if it was to happen ,and how it would effect you and yours if you knew ,then you could still put things in place ,and make plans as we all should ,then you would be covered whatever the outcome ,then forget about any tests,dont waste your life worrying about ,WHAT IF ,does this make sense?of course this would change if some wonderfull new treatment was discoverd,that would ward of AD .THIS IS JUST MY THOUGHTS ON THE TOPIC ,I WOULD HATE TO THINK MY CHILDREN WAS SPENDING THEIR LIVES WORRYING ,UNNECCESARILY.

 

[Brucie]

I'd suggest the following

- live each day as if it were the only one you had, make the best of it!

- do everything that you want to do that is is practically possible

- don't worry about something that will probably never happen

Any one of us could be scheduled by our bodies to get anything in the future. Yet any one of us could also get run over by the proverbial bus tomorrow.

No point worrying about things over which we have no control, and over which no-one has any control.

If there is anything practical you can do that may make your worries less, then do it - eg make a living will. I have, but that was after my Mum died of stroke, nothing to do with dementia.

But then when you have done that, live a good life!

 

[connie]

I like your suggestions for living Bruce. I think it is something we should all try to live by. Connie

 

[Mjaqmac]

I would agree with Brucie and Connie.

The future's not ours to see as the song goes, live for today Dianne, it's all any of us have. You are not ill now and may never be, hold on to that thought and enjoy your life and family.

 

[Dianne]

Thankyou

Thankyou all for your replies. I suppose I needed someone other than my husband to tell me 'not to worry'. I know you are all right, i think i may chat to my doctor and then make a living will anyway (may come in handy, may not but at least it would be done). And I will try and live each day as if it were my last, make the memories now and hopefully we will all recall them in later life. As for testing to see if there's a possiblity, this is something I may consider after making my list of for and against

Thanks again, I will try my best to 'not worry' as they say worrying won't change anything will it. It's a year on Wednesday since my Dad died and I'm probably feeling a bit down and thinking too much.

Dianne
x

 

[rummy]

Hi Dianne,
I too have a mother and a grandmother( now passed) with AD. I too have been concerned that I may follow their path. I talked to my Mom's neurologist about this and he said that AD is a genetic disease but not necessarily passed from parent to child. I am just trying to stay up with the research and do what is suggested for keeping the brain active. I don't want to get tested because I want to get long term care insurance and if anything were found , even in very early stages I wouldn't qualify. I'm 53 years old now so figure in the next 5 years I'll get the insurance and then worry about if I'm getting it or not. ( THis is of course unless I forget some pertinent between now and then )
You know having a family member with AD is so stressful and sad and I just refuse to give it any more of my joy by worrying about whats ahead and what I have no control over.
Hang in there, we are all in this boat together.
Debbie

 

[Canadian Joanne]

Genetic or not?

My understanding is that only about 5% of cases (the early onset familial kind) can be tested for so far. And the test is unequivocal - if you have the gene, you will get AD.

But for AD developed later on, my mother having it so slightly increases my chances it's not worth worrying about. And there isn't a test for that type so far (I think).

Brucie said it best: "No point worrying about things over which we have no control, and over which no-one has any control."

 

[Sheila]

Dear Dianne, scary stuff, I am in a similar situation. I do tend to watch myself for "signs" but I also think Brucies advice is very good and makes a lot of sense. If it happens it happens, but why waste good times now on worrying about a maybe. Love and hugs, She. XX

 

[Dianne]

Thanks again, you all talk so much sense (as does my Husband). You're right, I could get hit by a bus (looking on the bright side now aren't I). I will do my best to stop worrying, I could end up worrying for the rest of my life and make myself miserable for nothing. i suppose it will always be at the back of my mind but maybe that's where it should stay.

It does help though to know that I'm not the only one who thinks like this and that other people have the same concerns. Thankyou all, I really apreciate your thoughts.

Dianne
x

 

[Norman]

Too true don't worry about it.
I do some balmy things but stress causes all sorts of things.
If I get "IT" I probably won't know anyway,so why worry.
Norman