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Original poster

I sure I will get dementia and I want to prepare. What should I do? **MNHQ has been requested to add a trigger warning**

84 replies

Hebdenbridge · 07/07/2019 16:30

My mam has dementia and she did her mam. I can't bear the thought of my kids feeling obliged to look after me, or spend time with me even. It's awful.

I'm not sure what I can do to ease this burden in them, but surely there must be something? Am thinking suicide, when the time comes. But how do you know when is the right time? If you leave it too late, then I suspect you wouldn't actually do it. Also, does suicide affect life insurance payouts?

Maybe just being very clear that I want to be put in a home. So they don't have to feel guilty about that decision? And then also, they don't have to worry about me day to day?

OP posts:
Abibranning · 07/07/2019 16:36

Live your life for now, make memories with your family. My Dad has Parkinson's and dementia and I know he hates how he is now and so do I but my regrets are that he didn't always make the effort when he was well and now he isn't he wants to. suicide is your choice, but no less painfull for your family. I hate to be so harsh but I really think counseling would help you. You aren't coping with either loss and it's all wrapped up in a fear of what may happen. But may not.

Millie2013 · 07/07/2019 16:37

Google Advance Care Planning, I’m planning to do one
And just because there’s a familial link doesn’t mean you’ll necessarily suffer yourself Flowers But I get that it’s reassuring to plan ahead

Abibranning · 07/07/2019 16:38

Also put in place lasting power of attorney with people you trust while you can. All of your wishes can then be made clear.

Destroyed1 · 07/07/2019 16:38

Also, cures are getting better all the time and we may soon see one which eradicates dementia?

Illstartexercisingtomorrow · 07/07/2019 16:39

-make a will
-set up a care plan
-get a LPA

Original poster
Hebdenbridge · 07/07/2019 16:41

LPA?

OP posts:
Abibranning · 07/07/2019 16:44

Lasting power of Attorney

Abibranning · 07/07/2019 16:45

LPA

Bourbonbiccy · 07/07/2019 16:48

Another lasting power of attorney advice.
Make sure you have a comprehensive will, and say all the things you want to say to your loved ones now.

Fairylea · 07/07/2019 16:49

With the greatest respect op you shouldn’t live your life worrying about this. Yes it’s good to save for old age and emergencies but worrying about something specific like this is pointless. 1001 things could happen - any of us could get hit by a bus / have a heart attack / stroke / die some other way / get cancer etc - in your case before the dementia even occurs. And it may not! You never know.

My family has a genetic history of bowel cancer (Mum, Gran and Uncle and more all died of it) so I do get where you’re coming from but honestly try not to think about it till the worst happens - it may not.

TheQueef · 07/07/2019 16:49

It's my worst fear.
I also have a familial trait.
I've had two big illnesses in my life and I know I won't cope with dementia.
One DS is a natural carer and already has done too much I just know he will try and step in.
I want a dementia home or Dignitas.

Submariner · 07/07/2019 16:52

Yes yes to all the advice above. Really research what options are available to you and decide which you prefer now. To be honest we all should be doing this regardless of family history. Be open and honest with your loved ones about what you want.

drsausage · 07/07/2019 16:55

Maybe just being very clear that I want to be put in a home. So they don't have to feel guilty about that decision? And then also, they don't have to worry about me day to day?

My mum's job involved diagnosing and treating people with dementia so she had a lot of experience of it. The main thing she has done is to save enough to pay for a care home, and to let us know very clearly that it's not our job to look after her and that she should be put in a home no matter how much she argues against it when the time comes.

OrchidInTheSun · 07/07/2019 16:56

Research homes now. Lots won't take people with advanced dementia

And yes, if you commit suicide, it affects your life insurance

tierraJ · 07/07/2019 17:11

I will probably get it as 3 of my grandparents had it. 2 were actually quite content despite being unable to care for themselves.
But my closest Nan had delusions & hallucinations which were terrifying for her & she had to be sectioned for her own safety.
But the EMI unit did put her on medication which got her back to normal just forgetful.

Sadly all 3 died from a combination of aspiration pneumonia & heart failure.

Personally I'm more worried about eg having a stroke and being unable to move yet being mentally sound.

I don't fear dementia as I've suffered psychosis like my Nan & have ongoing psychotic symptoms of schizoaffective disorder which are controlled mostly by meds but get worse with stress.
I worry more about dying of heart issues caused by the meds.

Sorryisntgoodenough · 07/07/2019 17:18

Op I feel the same.

I have 2 grandparents who had dementia & a parent (whose mum was very bad in the end) who keeps saying that they will take a load of pills rather than get like that BUT who has already started to have such bad memory problems that they don’t realise how bad they already are Sad

I would like to be able to choose when I go rather than end up with such a lack of dignity in a home somewhere not even knowing my own name. I say that as someone who’s grandparents got excellent care in each of their homes.

I wish we had a facility like Dignitas here in the U.K.

Bluetrews25 · 07/07/2019 17:30

I've got a feeling life insurance will not pay for suicide.

stucknoue · 07/07/2019 17:35

Live the best life you can. Eat healthily, exercise your brain, get your affairs in order (including moving into suitable accommodation) before any symptoms occurred in your family, power of attorneys sorted. None of us are immune and as early as 50 we should be starting to ensure everything is in place for both conditions like dementia and sudden onset conditions like a stroke

cptartapp · 07/07/2019 17:36

Reduce the risk. Don't smoke, don't drink to excess, get your cholesterol checked. All big risk factors, particularly smoking.
Yes to LPA and a will.

namechangedforourprivacy · 07/07/2019 18:15

Can tell you from experience that life insurance definitely doesn't pay out for suicide, so if you're serious about that route, mouth shut, and happy accident of the back of a cruise ship leaving a diary full of future dreams.

I'm also very worried and afraid of dementia, but glad we don't have Dignitas here yet.
Like many hit by disability and government attitudes, I'd have felt morally obliged to use it before I was made to, because of the austerity program.
At the moment they're happy to tell me The Food Bank is for 'people in your position.' A decade ago that would have been unthinkable. Once Dignitas is here a lot of us will be expected to use it too.

McSwoon · 07/07/2019 18:35

Familial link here too...maternal grandmother, and 3 out of 4 of her children (the only one who didn't get it died at 49 from an undiagnosed cancer, the others all developed dementia or Alzheimer's somewhere from 70 onwards). Mum is 81, and in year 3 of alzheimers.

I am quite certain that this will be my fate, and I have no children - only stepchildren and a godchild, none of whom should have responsibility for caring for me.

I have no spare money but I do have a pension and life insurance. I don't want DH to have to look after me. I don't know how to plan really. Dignitas or Exit!

Bluetrews25 · 07/07/2019 18:53

Does anyone else think there should be a change in the regs whereby life insurance should have to pay out if the individual uses suicide when they have a medically evidenced terminal condition? Why should people have to suffer when they are terminal just so that their families will get the payout that they would get anyway?

EvaHarknessRose · 07/07/2019 18:57

Make a living will and get a lasting power of attorney. Organise your affairs. Think about what would have made it easier for you if your nan or mum had done it. Then stop worrying about it and live your life.

BiBabbles · 07/07/2019 19:01

Beyond the legal paperwork that the others have covered well, I would recommend Shaikh's How I'm Preparing to get Alzheimers Ted Talk [[https://www.ted.com/talks/alanna_shaikh_how_i_m_preparing_to_get_alzheimer_s?language=en]]

It's a worthwhile listen, but in brief the recommendations are:
-- resistance & mobility training (balance and muscle issues are also common along with memory issues, the more strength in your muscles and bones, the more you have to lose before it gets impeding)
-- hobbies that are open-ended and hands-on that you enjoy (things like reading, watching TV, and conversations can be disorienting and scary so bookworms like her and I need to ensure we have less academic/word-based activities we enjoy)
-- work on being a better, kinder person (so when our conscious isn't entirely running the show, we've built up kind habits that will fit into automatically for us).

It is difficult, and like you - if it comes to it - I'd far rather be in sheltered accommodations or similar than being at home or my kids home isnt fit for purpose and puts the difficulties of it onto my loved ones more than it has to.

ohhdearyme · 07/07/2019 19:02

Switzerland......death by injection

That's what I'd do