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

I'm so sorry. It's a very unsettling diagnosis for family, lots of uncertainty - I was previously a carer for someone with dementia, as well as having affected family members, and it's a very difficult disease to get your head round.

Find out what kind, if they can be certain now, as that can make a big difference in whether or not things will change quickly or not. And if there are any medications available to help slow the progress - again, this is type-specific.

One of my grandmas was diagnosed with Alzheimer's 8 years ago, immediately started medication, and is only now starting to really be unable to care for herself with things like remembering medication, and can still hold a conversation mostly normally (albeit with gaps in memory, bits of repeating herself).

The other showed signs of something being not right one Christmas - forgetting words, getting lost on familiar routes - and by the following Christmas she was all but speaking in tongues and aggressive, and by the following Christmas almost non-verbal.

The disease can progress very differently, and although it can be very hard at times, having the right support is key!

Oh I should add, the second grandma had vascular dementia, so a different type to the first!

I’m sorry. Dementia is an awful disease.

If your mother still has capacity, even for part of the day, then I very strongly recommend you get PoA set up ASAP for when she loses it.

Get PoA set up ASAP and then send it to all her banks etc (I hadn’t realised the second part)

Get in touch with the Admiral Nurses if they’re in your area for advice

Apply for PIP for her (you may then get her council tax free or reduced)

Get a referral to the community mental health team - an occupational therapist has been a god send for us

If there’s anything you’ve thought you’d want to do - like a little weekend away or something - book it now and don’t wait

Get care line fitted even if she’s ok, because it’s good for her to learn it now

Sorry you’ve sad news

Sufferers can deteriorate at a different pace. Keep a close eye on her.

I find that there is a tipping point when you all realise that they can not function alone and need a lot more round the clock care for their own safety.

Often you don't get as much help until this tipping point because they can function well enough till then, so don't think she is being neglected, it's just too soon to put certain things in place.

I would start looking around at nursing / care homes for dementia sufferers and for POA package of care options available for her at home till then as necessary.

Get together a photo album of people she cares about to look at to remind her of fond memories when she starts to forget.

Maybe get Carelink arranged.

I might set up, personally, an Amazon Echo Show to stay in contact visually as it's easy to just say 'Alexa call so and so'. I've never actually owned an Alexa but I would try it in this instance.

Have a look at Talking Point forum on the Alzheimer 's Society website. When I was trying to deal with my dad's dementia it was the only place I could get help and advice from. The consultant gave us the diagnosis and advised us to get some support from Social Services and that took 10 months! No other support forthcoming. It was a hard, hard time and truly nearly finished me. Good luck. Grab any help with both hands.

So sorry to hear this.

In the discussion with the consultant www.nice.org.uk/about/nice-communities/social-care/quick-guides/dementia-discussing-and-planning-support-after-diagnosis this might be useful - tells you what you should be told at diagnosis, some useful questions to ask.

I would then echo Power of Attorney asap; wills if she wants to do that at the same time. Maybe think about advance decisions mydecisions.org.uk/?utm_source=newhomepagebutton. Then it's all done and dusted and can be forgotten until it's needed.

If she is basically OK now she is very likely to be fine for years, dementia can progress slowly, but if you see her very regularly (daily) ask the opinion of someone more objective/who sees her less often on how they think she is - they may spot differences you haven't seen.

OP, have a think what you and DSis can offer. Do you live nearby, do you have your own children? If you can't be a carer, now is the time to start stressing that in conversations. Yes, your mum needs support but you and your family / marriage also need self preservation.

OK thank you for some really good advice.

DM has had symptoms going back fifteen years and is in her eighties now. She is very aggressive at times, and very angry that we think there are issues. She is adamant there is nothing wrong, but she doesn't even recognise which coin is what any more.

She has some business affairs which she is insistent she will handle, but capacity for that seems long gone - her only contribution is to enforce a paralysis on the situation (which now involves ccjs for thousands).

Bearing in mind she feels she is fine yet surrounded by idiots, she has no intention of signing a p of a, although I wonder if that will change with a diagnosis

DSis lives with DM and so sees her much more than me, but we've always agreed that DM home isn't suitable for any care needs and they would both move close to me. DM doesn't agree this, but is unable to manage living in her own and would resist any home furiously.

DSis and I are very much a team

I've been surprised at how much the diagnosis has upset me, bearing in mind I pushed for it on the first place, feeling certain DM has dementia

Yes re POA. Someone can have diagnosed dementia but still have capacity to make legal decisions such as this. The solicitor should be aware of the diagnosis to be extra rigorous in ensuring the client understands.

Dementia is a very hard illness for the whole family. And it has no “normal”.

I cared for my Uncle over 8 years with vascular dementia, as he had no family of his own. The illness seems to vary from person to person and the progression varies a lot.
You can also be on a plateau for months then suddenly it feels like you drop over a cliff and they suddenly loose a lot of skills in a very short space of time then plateau again. So what works today might not work next week. You have to be constantly reviewing how you are handling things.

Agree with Power of Attorney ASAP.

Talk about where all important documents are eg. Banks, insurance policies etc. And watch what they are doing with their bank cards as my Uncle kept taking money out and hiding it and not knowing where.

Even knowing where any house Title Deeds are - this caused us no end of problems.

Find out if she has any things she would like at a funeral. My Uncle was non verbal for the last 3 years so we had a few ideas gleaned over the initial years but we missed the window where we could have asked him for more details of what he would have wanted. Another family member recently passed in old age and we wrongly assumed her husband would have known her wishes. Turned out they had never discussed it.

She’s likely to start to hate change so think about replacing anything that may need replacing soon, from televisions to towels, telephones to toasters. The simpler the better. She may find ‘comfort’ in holding on to a well known item, eg a purse, a hairbrush, a phone, tv remote. I second the Alexa/Echo idea if she has WiFi. Try to get her used to a cleaner or other regular visitors coming to the house - it makes it easier to introduce carers further down the line. Be prepared for her depression and or mood changes/swings. If she has Alzheimer’s also be prepared for aggression. She may may a sweet little old lady now, but dementias can mess with your brain in a horrible way.

Also talk to your sister about options for looking after each other. There will be times when you suffer from ‘burn out’ and need to take a beak. Be ready for this, and for the mental pressure on yourselves. It not easy.

Talking Point is very good, and it’s helpful to know you’re not the only people suffering. Obviously get all the legal stuff sorted, POA, DNR, wills etc.

I’ve painted a dark picture from my experiences, but there are some people who just gently fade away happily into la-la land.

Take care, and remember your needs are as important as anyone else’s, and there will be times when you have to stay ‘no’, for the sake of your own health, sanity, or family. Without a doubt it was the hardest thing I’ve ever done - it nearly broke me too. Be strong.

I wish you all the best.

Power of Attorney and also Third Party Consent with her GP - it’s not the same thing.
Tell people about the diagnosis - people can be extremely kind and supportive.
And realise that certain discussions aren’t worth having, whether it’s a discussion with her which will just go round and round and end in an argument, or a decision you need to make for her that she may not fully understand, some things are easiest to just sort out yourself.

Oh and medication. Make sure someone actually sees her swallow tablets, and that they aren’t secreted in her mouth and brought back later. And hidden (possibly stockpiled) around the house.

@oldieandgoldie

She hates change - she's a fairly serious hoarder

I also agree with all the people who have mentioned POA. My Mum was officially diagnosed with Alzheimer’s last April although we all knew she’d had it for a couple of years. It took about 15 months to convince her to get POA and in the end I was really assertive and said to her you need to get it done. It worked and we got it through at Christmas. My DM is 68 and can’t really do anything herself anymore apart from tell anyone who’s listening how well she’s doing and how independent she is.

OP the aggressive behaviour is really hard, if you’re finding it too much, take a step back for a few hours/days/a week/however long you need. Do something nice for yourself, look after yourself.

My DM wouldn’t listen to me at all, but ‘The Doctor’ or another ‘Man’s words were usually listened to.

And finally - for now - there’s a very friendly and helpful Elderly Parents section on here.

Dementia is a cruel disease, particularly for those around the sufferer as it progresses - the solace for me is that my mom is perfectly happy in her little world.
It’s ok to find humour where you can. My mom was a hoarder too and it got much worse as dementia progressed. Every so often my sister & I would have a clear out, safe in the knowledge that it never upset mom because she couldn’t remember what she’d hoarded in the first place (obviously we wouldn’t have done it if it had)

That it would be ok, this is obviously only my experience and everyone is different but my parents decline has been ok. They are now settled and happy in a care home and in complete oblivion to the fact that they are in nappies and and have no idea who any is half the time. Even that is not as tough as it sounds to deal with. The transition is the hardest part and it sounds as though you are there now with an uncooperative parent.
Good luck

My Dad's partner has dementia, not sure what for. She was diagnosed Oct 2018, although my Dad is in denial. It doesn't seem to be progressing that quickly, but she doesn't know what a debit card is and her personal care isn't up to scratch. My Dad is very resistant to help. Unfortunately it is too late for PoA cause she isn't of sound mind, so I would urge you to sort this out asap.

Sorry to hijack thread ... but it's on my mind. We think (well, we know...) MiL has dementia of some form. I think we need to get her to the GPs to discuss this. DH says she'll refuse to go, and refuse to have tests (which is probably true) and what can they do anyway? He already has POA for health and finance.
I kind of think a diagnosis would be useful for 'the future'. At the moment she's able to live independently with our minimal support, but anticipate that changing at some point.

@iwantthatname we were in that stage for a long time. In the end, after both DSis and I had spoken to the gp with our concerns, they agreed to call DM in for a "check up" and send her on for tests, which she didn't really question as she had had strokes previously so it was presented as a follow up to those. Some types of dementia can had medication to show progress, so that is the obvious benefit