To ask what you wish you had known, when a loved one gets a dementia diagnosis

[LostInTesco]

Been contacted by DM consultant. Her mri shows dementia (she wouldn't give more details at this stage over the phone) but wants to meet with me and DSis to get a full picture of issues. She'll then meet with DM

Is there anything you wish you had known, or asked or that we should consider?

Not wanting to drip feed, just being concise, so feel free to ask questions and I'll answer, if I can

Join DementiaAware forum on facebook. Loads of good advice, empathy and information

POA for both Health and Welfare; discuss end of life plan with her (and GP). The end of life care needs careful thinking re specific decisions. So, does she want treatment if it's a primary or secondary infection that she may catch?

If you have time, watch Teepa Snow on Youtube - she is fantastic

I’m very sorry OP. My mum had vascular dementia and it was very shocking towards the end. Please do your best to get power of attorney. Mum was in an excellent care home in the end. She was too aggressive for any of us to ever have been able to care for her at home. I’m not saying that will be the case with your mum but I would try to have conversations with your sister now rather than when you’re in crisis

That the person you know and love will disappear and be replaced with a toddler without empathy or understanding of anyone else but them. I spent too many years trying to get my mum to be my mum that I was probably abusive towards her sometimes. I just wanted my mum back and I really felt that some kind of logic would kick in Nd she’d be OK if only I could make her understand.

Treat as you would a small child. Smile, tell stories, believe whatever nonsense they tell you. Lots of nod and smile. Never tell them anything sad - my mum constantly asked why her m7m hadn’t been to see her and it took me a long time to understand that ‘she died many years ago’ was far worse than the white lie ‘she said she’ll come later this week’.

Time is short. Be kind to your loved one but most of all, be kind to yourself. It is dreadfully hard to watch such a slow, cruel disease take hold.

@sotiredofthislife makes a good point. It took me a while to understand that entering mum’s world with her was less distressing to her than telling her the truth. It was a hard balance though because in the early stages she would be very sensitive to being patronised

Though I can understand why social services having the authority to swoop in and "take over" might have issues, the unintended consequence fallout of requiring permission from people who are actually incapable of giving permission, is immense and seems to have no currently deemed acceptable solution.

Dear God, I'm on Facebook pages now, and I'm heart broken at what looks like is to come

Not everyone talks about aggression but those who do talk about it increasing and becoming worse. This is so distressing. I want to escape my thoughts.

I'm such a wuss. But I'm beginning to rapidly understand why so many of you say to take care of yourself because this is soul destroying

OP it’s not like that for everyone, it really isn’t , but if you know the worst scenario then you can prepare for it both practically and psychologically

That I should have left ex-DH and moved back home to be with my family. It's too late now.

You are facing a hell of a journey. Don’t make rigid decisions now, because it is much harder to reverse an intrenched position than having an open mind. It is highly likely that your DM will need to go into residential/nursing care for her sake as much as yours. For example, she is likely to become bed bound and will need turning every 2 hours day and night. She will need to have personal care 24 hours a day - incontinence doesn’t fit with carers hours, feeding will be a big issue as well. Please make plans now as any delay makes life intolerable. I’ve been there with my darling father. Sending you every strength.

I'm actually going to go against everyone here and warn you of POA.
My mum was sectioned due to her dementia and placed in permanent care which was agreed on and then she passed the mental capacity test and has launched a safe guarding investigation into me for selling her house and using her accounts for her care, her social worker and care home manager have allowed this to happen even though everyone agreed at the time and everything has been done correctly. I have now relinquished POA, the council can have her.

The only suggestion I would make is to not argue with her reality as this will only wear you down.

If your DM thinks it is the 1960s, then it is, and Harold Wilson is PM and Sandie Shaw is singing Puppet on a String. Otherwise you will end up upsetting her telling her that a friend or partner is dead so she goes through the pain of hearing for the first time. It will cost you nothing to enter her time zone and give her peace of mind.

I am very sorry to hear about your mother. Each person with dementia is different. My mother has fairly advanced dementia (Alzheimers) and is never aggressive, she is in her own happy world. She cannot do anything for herself and is in a care home, where they take very good care of her.

Whether your sister would be able to deal with your mother at home in future depends on what behaviours your mother exhibits, and what your sister is prepared to put up with. Really there is no way of telling if it will be possible, it's very unpredictable and you have to react to changing circumstances.

In terms of POA, it does sound as if your mother will not agree to do it. At the point when she no longer has capacity it may be worth considering applying to be her Deputy, she does not have to consent to this.

www.alzheimers.org.uk/sites/default/files/pdf/factsheet_becoming_a_deputy_for_a_person_with_dementia.pdf

Entering their world is all very well, but Contented Dementia never tells you what to do if the sufferer’s delusion is that they are all alone in the world, all their family are dead in tragic and shocking circumstances and those who aren’t never visit them.

Don't argue if she tells you something that is clearly nonsense, don't try to use logic to get her to understand she's wrong. She won't believe she's wrong, and if you do manage to sow doubt into her mind, that will be distressing for her, and the only effect is that she'll invent an even more crazy story to fit everything into her view of the world.

Go over to the Dementia board, and to the Elderly Parents board under "other stuff". Lots of support there, and lots of practical advice.

I think we will know more next week - it is very hard not to argue on some things (issues surrounding her assets) as she is currently insisting she pursues litigation. She has failed in this once, and rather than go in a different direction, she is intent on pursuing it. There are other options which she won't look at. She will be very angry if, as a result of DSis and I giving full details to the consultant, they feel that she does not have capacity to handle her business affairs. @Anniecott I fear we would be in a similar situation, and I am sorry that this has happened for you

In fact, does anyone know anything about the process surrounding assessing mental capacity to handle business affairs?

@LostInTesco
Thank you, it took 3 yrs of hell to get to my decision to walk away and it wasn't a decision I have taken easily and not one that a lot of people understand. Unfortunately mums dementia has made her very bitter towards me, she blames me for everything, despite evidence to the contrary. I also had the added battle of her being an alcoholic which made it worse whilst she was at home. The only thing that helps me is that at least I know she is now safe and looked after, which is all I ever wanted for her, no mater what she thinks.
I wish you well for you and your mums future, just look after yourself.

The only suggestion I would make is to not argue with her reality as this will only wear you down.

This. And if they think you are a different person just go with it. My mother is adamant I am somebody else and always calls me that name, she has only used my name in the last two years to complain that I never visit her and don't love her. I'm used it to now, I know it's the disease and not her talking.

The middle bit of dementia is the hardest . The going along with ir bit . We are in the later stages now .

My mother insisted on keeping her car for 10 years after stopping driving after her initial stroke .
We tried to get her to sell it she insisted it be brought when she moved nearer to us . She insisted we must do it up so it would be good condition . She would not sell it for scrap . We spent hours over many occasions gently explaining it made no financial sense to do that and no one would be interested a clapped out Ford Fiesta . She doggedly and aggressively refused to listened to us. It became something we avoided talking about and sold it when she briefly went into respite . She was determined to hang on the car even though she never drove it or attempted to . It was a symbol of independence.

@geekchicz I can identify with the car issue completely. I think we're in the middle bit and have been for a while - my best guess is this started about thirteen or fourteen years ago, and I think our normal has just stretched to accommodate things

My advice is to agree wtih everything they say and then do what you want anyway. Sounds awful but trying to explain things that they don't understand becomes very wearing. It also has little purpose if they don't understand anyway.

Same if they think you are someone else, just roll with it. Less distressing for them.

My Dad has vascular dementia. Bear in mind that you can typically go quite long periods in a similar state and then experience sudden decline. It is more like a series of steps downhill rather than a slope if that makes sense?

Definitely ask the doctor for advice on capacity.

My mother cared for Dad at home for a long time and was slow to access any outside support and frankly there wasn’t much anyway. When he eventually did go further downhill last year and went firstly into hospital then a care home, it was quite hard to find somewhere suitable because he was quite a long way along the dementia path. Many places didn’t want to accept someone in his condition but if he’d already been there they would have kept him.

He’s now in a facility for people with challenging dementia behaviour. I hate it and honestly believe he doesn’t need to be there but moving him isn’t at all easy. So be very realistic about keeping him at home unless you can afford 24 hour care and are going to be able to find it.

So very difficult.

I also agree with Hercsonaroll, my mother spent the last few precious years arguing with Dad about totally stupid stuff which he got wrong. She said he needed to know he was wrong but it was awful.

And now it’s too late. He’s almost non verbal. I’d give a lot to hear him getting stuff a bit wrong now and just going along with it.

That there can be good moments. My mil was always a terrible worrier but dementia means she can't worry about us any more.

That rigidity won't help you. Maybe talk with your sister about 'doing the best you can for mum' rather than 'never putting mum in a home'? Dont make promises about specifics when you simply can't predict the future.

When my grandad was diagnosed, I had no idea that he would live for so long with it. I naively thought it was a rapid decline but he slowly disappeared, confused and upset a lot of the time, for ages. It was horrible.