What if

[sammie17572]

Hi all

I'd like to introduce myself. My name is Samantha and Im a mum to 4 kids and a wife. Alzheiner's is on both my mother and fathers side of the family, the most recent diagnosis being for my grandfather who is 85. His diagnosis is ecent although the signs were all there i.e putting dirty washing in the freezer! forgetting ppl and things and remembering obscure things or events from way back when.

My FEAR is that I myself will eventually succumb to this disease/condition. I would like to ask some advice.

I would like to know if there is anyway that I can be tested to see what my chances are of getting this condition. Also I would like to know if there is any way that I can put in place either with a doctor or solicitor instructions as to what I want to happen if i do succumb to this condition. Ultimately I do not want my children or husband to put their lives on hold to look after me. I would like to make these plans in advance so that they do not have to face me with this awefull condition. I also want to ensure that if I have plans made that they will be taken seriousely legally and followed. Even if when(if) i am diagnosed with this condition and create a stink about being put somewhere other than with family that my plans are carried through.

I think with this in place i could live life knowing that plans have been made and relax.

Sorry for the rambling i do hope someone can help me in this

Samantha x

 

[jenniferpa]

Hi Samantha, and welcome to TP.

As it stands I do not believe there are genetic tests to show whether you have a vulnerability to AD, in part I believe because something like less than 5% of cases appear to have genetic component. Having said that - how far down the road are you looking? Every so often there are research reports that indicate that certain tests may show the early stages of the disease (In July, I think, I read a report that there are some changes detectable in the eyes of early AZ sufferers). Also, speaking as someone who is in the US and has to pay for healthcare, the concept of being tagged with a label, not just for myself but also my children fills me with horror, however that's a personal opinion.

As of April next year you with be able to draw up a Lasting Power of Attorney which will not only cover financial issues, but also personal care issues. The possible probelem with this, and any other plans you may lay out, is that while you may have made your wishes clear at the time you were in full possesion of your faculties, it depends on others to carry them out, and guilt can be a powerful motivator. One can easily forsee a situation where, confronted with an AD sufferer pleading not to be put into a care situtation, loved ones would cave, no matter what they said in the past. I do not beleive that the UK currently has a Living Will system, although making decisions rationally, particularly how to finance those decision would go a long way to ensuring those decisions were carried out.

In some ways, having 4 children may work against you - if only one of them holds out and says no to placing Mum inb a home, you've got real potential for family conflict.

I'm sure others will be along with their opinions (if only this &*^& board stays up long enough for them to do so!)

Jennifer

Correction
http://www.genetichealth.com/ALZ_Genetics_Testing_in_Healthy_People.shtml
The above link discusses what testing IS available, although not necessarily in the UK. In brief, early onset AD is the only area where a genetic test might apply. The number should be less than 10% of AD cases are Familiar AD (all early onset).
http://www.nia.nih.gov/Alzheimers/Publications/geneticsfs.htm
This has more information than you probably want to know about possible tests for late onset AD

 

[Tender Face]

Hi Samantha, and welcome....

I don't want to belittle your fears ... but have you thought about succumbing to 'other' conditions - or 'freak accidents????? Would THAT make a difference to your thinking about how best to 'protect' your children????? (Youch, that wasn't meant to sound so awful).....

I may sound glib - me having a very scant biological family medical history and perhaps not always appreciating the angst that medical genetic inheritance may bring.... (just the lack of it!!!) - been offered genetic testing for some 'conditions' - or 'predispositions' - and for me personally decided I would rather not know .... much rather 'relax' with the family I have been blessed with and face each bridge as I come to it.... I'm not sure that knowing about any 'possibility' in advance would make me - or my family - any better prepared should that 'possibility' become reality .... why waste time worrying / planning for what may never happen????? Sure, make thoughts known ... to loved ones, to a solicitor (no legal eagle, either!) ...then park it... enjoy life.... (as best one can)...

'Carpe diem'!!!!

Sorry, just my thoughts......

Love, Karen (TF), x

 

[sammie17572]

hi jennifer and karen thankyou for your replys. Firstly i probably should have added that im in the uk. but your information and links were excellent jennifer

Karen no youuuuuuch needed honestly. Yes I have thought of succumbing to other illnesses etc or freak accidents and so on. I think what really scares me with alzheimers is the loosing my mind and not being able to have my wishes known espiecally as with my grandad it came on so quick and was like BANG here it is.

Ive lived through and survived cancer and that felt like it was live for every day which we did but long term plans could be made although thankfully never needed. It was every day at a time and look forward to the next. I feel that that is what is taken away. Ive got lots to think on here. Id like to thankyou for taking the time to reply to me.

love allways

samantha

 

[mel]

Hi Samantha
I agree with Karen.....I think that this disease is so awful that I have no intention of giving it the satisfaction of causing me any more grief than it already is!!!
my two aunts(mums sisters)also succumbed to it and I have no intention of worrying whether I'll get it or not....though I thoroughly understand people who do......All I've done is made my wishes clear that if the time comes I must not be a burden to my family.....no matter what I say at the time !!

Sounds like you're a battler,Samantha!!!.....keep up the fight and don't let it get to you!!!! Just make your wishes known...and keep reminding everyone....and look forward to a rosy future.....!!
Love xx