Familial factors with EOAD

[MLM]

Hi everyone,

I haven't posted for a while but I just want to discuss something that plays on my mind a little bit. My father-in-law has early onset Alzheimer's Disease which was diagnosed last May. He is 55. I know a bit about dementia as I am a newly qualified social worker, but I certainly don't know everything about it and I'm not a doctor. I decided to read Still Alice recently and it brought back to the forefront of my mind the potential for dementia to run in families. What I didn't really know is that early onset dementia is quite often down to genetics, and I can't help but worry about my partner and whether he could have the gene that has most likely brought this horrible condition into our lives, and even worse whether any children we have will have such a gene. We have a 1 year old little girl and I can't help but worry for her future should she a) see her dad get the same condition as her grandad or even worse b) she ends up having EOAD herself.

Anyone else have these worries? I know that there isn't really much point in worrying because even if we could know for sure there isn't anything that can be done to change that fact other than trying to live a healthy and fulfilled life and hope for the best. It is hard to erase this worry from my mind though.

Michelle

 

[MLM]

By the way, Still Alice is a really good book if you haven't read it yourself. Not as bleak as I thought it might be, though it did make me cry a number of times!

 

[stanleypj]

There are a number of AS factsheets on this topic that are informative and reassuring, this one, for example.

 

[Kevinl]

Life is too short to worry, if it happens then deal with it there's no point in ruining your life over something that almost certainly won't happen.
K

 

[MLM]

Thank you Stanley, I had seen that fact sheet. I suppose my personal history makes me worry when it comes to even slim chances because my first baby unfortunately had a genetic condition which resulted in me losing her shortly after 20 weeks of pregnancy. The odds of a genetic cause of my father-in-law's condition being caused by genetics are a similar figure to the odds that I would've had a baby with the genetic condition she had, so unfortunately I've lost at the game of odds once before. I just worry that we may lose the game of odds once again.

I know what you mean though Kevin about not being able to do anything. It is very easy to say "don't worry" though and a different thing in reality once the seed is planted. Like I said myself, the only real thing to do if always live life as fully as possible. I just hope that our lives aren't rocked by more bad news.

 

[MLM]

Plus I'm sure most people would like to turn back time and do things differently if they knew they were going to develop a life-limiting condition at a relatively young age regardless of what that condition is, not just dementia. Planning for retirement was certainly very different for my family before this news.

 

[stanleypj]

I understand what you are saying and I'm sure we all have similar fears for various different reasons but surely, as you've suggested, the best way for everyone to live is in the moment, valuing all the good stuff and dealing as well as possible with the bad. As for retirement plans, it probably makes sense not to have very specific plans whatever your family history. I bet there are so many people on TP who never anticipated their retirement being dominated by dementia - their own or their loved one's. If there's anything in life that you really feel you have to do - and I often think people's 'bucket lists' sound rather trivial - doing it when you still have the ability is probably the best plan.

 

[canary]

Id get the "official" stuff out of the way if you havent already (PoA, will, end of life directive etc) and then put it all to the back of your mind and go out and do things and enjoy life.
My husband was disabled in his 30s, but not from dementia - from a road accident. You cant plan for something like that!
Seize the day!

 

[LYN T]

From a slightly different point of view; my Husband was always convinced that he would get some kind of mental illness/or dementia. He got both. Bipolar and Alzheimer. He was the third generation of his family to get AD. But boy did he live his life to the full We didn't have the attitude of doing things once we retired -we did those things there and then. Traveling was our thing-and we embraced the world with our journeys and visiting different cultures. WE LIVED! We didn't wait we just did it! Pete became ill when he was 58/59, a late diagnosis and he was already moderate/low severe when he was barely 65.

I cannot tell you how glad I was that we did the things we did when we did. Life is for living and I advise that's what you do. I have my memories and those times are the ones which keep me going. You see I KNOW that Pete was happy when we saw new things and had new experiences. I know Pete could no longer remember those times but I did. I remember his excitement, his delight and his happiness.I'm glad he had those times. I'm glad I saw him content.

I wish you peace

Lyn T XX

 

[MLM]

Thank you. Everything official has been dealt with early on. I'm finding things hard as I'm a social worker and I find it easy to support strangers but much harder when it is my own family. I'm finding it hard to convince my MIL to live for the moment, perhaps because she's feeling distant from my FIL because he won't talk about his diagnosis? I don't know. She often says she wishes he would speak more about it. As for me and my partner, we try to live for the moment but we don't have much money for much real "living" so I do worry that a comfortable living may come too late and then it'll be snatched away. I know that not everything can be planned for though, I see it every day! I don't know why I am so worried about dementia in particular when I am very much a live for the moment type of person.


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[stargirl]

I worry about this often - I'm in a similar situation, and constantly scrutinizing my OH for 'signs'. He's always been the type to struggle more with word-finding and memory when stressed and frazzled, which I can't relate to at all and find really frightening!

I comfort myself with these thoughts:

1) Who knows what treatments and interventions we will have in the future? When I'm really anxious I go and read about the latest research and breakthroughs - there's such a lot of really promising work being done!

2) Waiting and expecting bad things to happen doesn't change the future one bit. It just spoils the present

3) We're fortunate to know there's a risk, and be able to take small steps to reduce that risk (such as diet, exercise, etc).

4) We could all be hit by a bus tomorrow!

I imagine that's all very obvious to you and you've thought it all yourself at times, but what helps me is forcing myself to think through those four things, all at once, and it usually allows me to stop worrying uneccessarily. Hope you get some peace from those nagging thoughts! x