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

My mum had a careline button. When she pressed it, accidentally, she was terrified of all these voices coming at her. She was upstairs, the voice (of a care giver) was coming from the loudspeaker unit downstairs, but my poor mum had no idea who these voices were, what they wanted, where they were coming from etc.

Careline is marvellous, but....not always right for a person with dementia.

If you don’t manage to get a PoA, you’ll have to apply to the courts for a deputyship in order to manage her financial affairs.

Agree with everyone who has mention POA ideally you want one for both Finances and one for Health.

Secondly get in touch with all the services you can, you might not think they are needed yet, but the system moves slowly and dementia decline can come out of nowhere.

Fluids are really important, it’s so easy to get water infections with dementia or Alzheimer’s as the person forgets to drink or no longer recognises thirst. Try as best you can to get a good routine of taking in fluids regularly.

Remember not to take aggression and insults personally. Fear and confusion can often makes suffers agitated and aggressive. Also if you see an usual amount of aggression or agitation always get them checked for a UTI.

The dementia talking point is a great source of information and the forum is really good for understanding and support.

Dementia is an absolute fucking cruel bastard of an illness. It’s taking my dad away before my eyes, and my heart goes out to you, OP, and anybody sharing that experience.
POA is really important, and I echo all the other posters who have said that. Be careful though, a person with dementia can be assessed to have capacity for a surprising amount of time as their illness develops.
Something that surprised me is that as my dad’s memory has diminished, my memories of him have increased. I’m having detailed memories from the deepest depths of my brain with vivid memories of feelings and emotions that I thought were long gone. I remember him holding me as a toddler, the day we saw an old aircraft carrier being towed out of Portsmouth harbour and I was on his shoulders, the time we went to an air show and the jet was so loud I hid in his legs. It’s like maybe I’m suddenly remembering for him, and it’s so bittersweet. We talk about these memories and things we did together, and it keeps us connected. I live 250 miles away, and don’t see him as often as I’d like. I’ve found that it’s ok to only talk for short periods, say 15/20 minutes when I phone him, because he gets tired and then he can’t use his coping strategies. I’ve heard his voice change and then he gets confused and it upsets him. I think that his altered sense of time helps in keeping the chat short without upsetting him. Skype or FaceTime is good for phoning him, because a person with dementia can find it easier to talk in person, rather than to a voice coming out of a phone. They often have a bigger need for visual clues when they communicate. My sister lives in the same town and an awful lot of the burden is on their shoulders. It’s really important for me to support them, even if it’s just saying ‘thinking of you’ and sending a card.

Dad’s illness progresses in fits and starts. He’ll motor along for quite a while with no appreciable change, and then suddenly deteriorate. It’s like steps rather than a smooth downward curve, if you see what I mean?

Take an up to date photo of her and some sort of tracking device. My FIL has been in some denial as how bad MIL is. He left her alone for a few minutes at the shops (she can’t walk that well) came back and she was gone. She was found 8 hours later by a kind woman who spotted her and took her in.

But no one had a recent photo for the police and although he said he’s activated tracking on her phone, he hadn’t and she’d lost her bag anyway. There’s lots of trackers on the market so worth a look.

Totally agree POA is essential. Dont leave it too late.

Also she maybe entitled to attendance allowance and free council tax.

Pills can be prescribed in blister packs to make taking easier.

My DM is on the max dose of Galantamine for her Alzheimer’s. that may slow the process slightly.

Given the aggression etc that your update mentioned, I’d again recommend an OT - they may also get a prescription for memantine which helps calm people too (often GPs aren’t aware of this apparently- I wish we’d got my mum on it way sooner as it’s made such a difference)

I'm so sorry. Try and arrange a social services assessment ASAP (these take months) as you may well be entitled to help in the home.

Think hard about it you and your family will be able to cope with double incontinence + the aggression. We had no choice but to move DM into a home when it got too much.

Enjoy as much of the good times as you can and take lots of photos and videos.

That what she needs will eventually override what she wants. And that dementia cruelly takes one life, don't let it take several. Draw your line in the sand about your level of input and stick to it. There may be a time you have to step back. Social services will otherwise leave family to it.
Also that carehomes can be the very best outcome in many situations.

think how you will all cope when she needs constant care, will someone be able to be with her at home, all the time, and do everything for her, personal care, washing etc, and when she becomes bed-bound.
the advantage of having the diagnosis is she should get higher rate attendance allowance, you may need to apply for the lower rate one first, and nil rate for council tax.
do not try to correct her re factual matters. do not argue. leave it and try to find a different way to do things.
if they're are any local groups for support, alzheimers/memory loss.
it is a progressive disease. double incontinence, loss of speech and mobility often occur, perhaps after some years. think about care needs. i have seen v little good care in care homes. also many agencies send almost anyone, they take anyone, not everyone really cares about the client, its just the easiest job to walk into. so beware. if you can find a good person to help you, someone you can trust, though local knowledge, that would be best.

Getting that diagnosis is so important. It does open doors to people helping you. Our Admiral's Nurse even helped us get a blue badge for my DM (and they are like gold dust). Her reasoning was (and she was quite correct as it turned out), if/when walking became an issue and the car was right on the other side of the car park do you really want the choice of dragging the equivalent of a grown up toddler across a busy piece of ground or leaving a person who may wander off on their own whilst you get the car? Neither one works and that blue badge meant we could, whenever possible, park close to our destination. Which meant less tantrums and less worry. Our Admiral's Nurse explained that, for example, even going to the supermarket would become extremely tiring. Imagine not remembering which aisle the apples were in. Now imagine not remembering what an apple looked like...that's the progression sometimes and, that lack of remembering can come on all of a sudden then snap back. Some people even have the hallucination of doors disappearing so they can't find their way out of a room for a few minutes. All of which adds to the tiredness as your mind battles with itself trying to get that bit of memory back.

POA is really important if you can get it. It meant that I could make decisions on mum's behalf, have banks talk to me, hospitals talk to me, all without mum's specific instructions. As she is also deaf that made quite a difference!

Make sure you and your DSis come to arrangements regarding breaks. Looking after someone full time is hard and often soul destroying - even having an afternoon to yourself sometimes is a big boost.

And if you have day centre get her on the waiting list. They take the person for the day (or 9am to 3pm) and have things like bingo, craft, visits, hairdressers, chiropodists in many cases. Mum was always more 'sparky' when she came back from her weekly visit because of the stimulation.

And if she doesn't get it already, apply for Attendance Allowance. Most people I know who have dementia get it. it's not means tested and your DM can use it any thing she wants - domestic help, even paying for a mobile hairdresser to help her if she can't get out.

Your DSis may be entitled to a carer's allowance too. Best to check.

And finally, start getting everything financial set up on standing orders or direct debits. My mum's signature soon became illegible so cheques couldn't be written and that can be extremely awkward. Get as much as you can on direct debit as standing orders have to be signed as things change - direct debits don't.

Oh and a really daft thing. We got a stamp made of mum's signature for Christmas and birthday cards. I realised she was getting upset not being able to sign cards and she used to have great fun stamping her Christmas cards whilst we shared a mince pie and a cuppa!

Good luck. It is hard and everyone is different. You just sometimes have to think outside the box as they say.

Sorry to hear of the diagnosis. My Gran had dementia then Alzheimers for over 20 years, and eventually died of Alzheimers as she gradually lost all functionality.

I would add speaking to your local authority and the social work dept about care options because we had carers going in 4 times a day: morning to get her dressed and breakfast, lunchtime, teatime and bedtime. My Mum lived along the road so would go in 2-3 times a day before and after her work and at night too. This enabled my Gran to stay in her own home until just over a year before she died.

She also attended a wee centre once a week where they came and collected her and brought her home, and we had an amazing volunteer from the local Befrienders charity who came and visited once a week too.

If you do decide that her and your sister move closer I would recommend getting legal advice prior to selling her current house incase she ends up needing to go into a nursing home. My parents had to get records dating back about 30 years to prove my Gran hadn't sold her house to avoid paying home fees!

It's a bit of a minefield to navigate but she's lucky to have you to fight her corner and once you get things in place it will help hugely xx

Your Dsis (if younger than 60) needs to think what she will do if your DM needs to go into care and her house is sold to fund it.

I expect I'll get dementia for sure so this thread is very useful (I am a planner). Thanks.

The best thing I did for my dad was buy a bright red week to view with a notes page (moleskine from Amazon) and trained him to write every appointment and other random thing in the one place. Then every year I buy the exact same one.

Kids school-type name labels in gloves, glasses cases etc with name and phone no for when they fall out of pockets

My sister and I cared for DM with dementia. We both educated ourselves about what could happen. It was good to be on the same page, especially when Mum started accusing us of stealing her valuables. If we'd been clueless about dementia, this sort of thing could have caused problems. I'd ring DSis and say " Mum says you stole her purse, now what did you do with it ?" and we'd have a giggle about it , instead of getting suspicious of each other.

This is all very helpful and there's lots for me to think about

I think that DM has vascular dementia.

DM has significant assets but they currently are extremely mismanaged.

It is not possible for DM and DSis to stay in their current house. It is... in very bad condition and there is no way of repairing it. DSis has been desperate to move for many years but DM refused. DM is very controlling and we've slipped into a way of life where we appease her. Unfortunately we have a hell of a mess to resolve now, with every deferred issue.

Going against DM is a huge thing. Dementia is a huge thing. Both together feels overwhelming

Look for dementia support groups/cafes in your area, these can be a godsend. Lots of good ideas on this thread. I think my biggest price of advise would be to go easy on yourself, I really struggled the first year after my mum was diagnosed, in hindsight I probably should have seemed help but I didn't. It wasn't a huge shock either, I knew she had it before she was diagnosed. My mum is young to have it and I was VERY angry. I remember crying in Aldi at how unfair it was that the lady in front of me who was about my mum's age was able to do her shopping but my mum couldn't manage that. I was not that nice to live with I'm sure. I am in a better place with it now. There is a good book called contented dementia which I usefull. Good luck

Definitely get powers of attorney in place for both Finance and Health, you can do them yourselves online which is obviously much cheaper than using a solicitor. My mother in law had vascular dementia and was in care homes and then nursing homes for the last 9 years of her life, make sure you find out what help your mother is entitled to as it's very expensive if you are self funding and need residential care. You may be able to apply for an attendance allowance immediately, if your mother already needs help.

I reiterate that POA is essential. If you don’t get it now, it will cost a fortune later. Maybe the consultant could speak with her?

You should apply for attendance allowance for her. If she gets that your sister could get carers allowance.

My mam has Alzheimer’s, diagnosed 2013. She couldn’t tolerate the medication so is on nothing at all. She’s n a care home now as in totally unable to look after herself.

This diagnosis is a nightmare. So sorry you have found yourself here x

Thank you everyone

DSis is emphatic she'll keep DM at home and not put her in a care home. I'm not sure how this will work practically - has anyone done this?

I'm feeling very shell shocked somehow - it's overwhelming and I'm grateful for all your advice

Sometimes you have to let everything fall apart to crisis point if they refuse carers, BUT get the POA ‘s done . It’s online . It costs £40 each . It takes about 8 weeks to come back . A diagnosis of dementia doesn’t mean she’s lost capacity yet necessarily and can’t sign it if she understands the principle of it .

The disease makes their character traits worse.
Vascular dementia is like living on shifting sand.
You’re her comfort blanket. They don’t let go.
She knows something is dreadfully wrong but they won’t admit it.
Forget reasoning with them . It doesn’t work . Her executive functioning is shot most likely and has been for a long time
Prioritise your physical and mental health .
It’s a bureaucratic nightmare and the social care system is in meltdown .
a & e is no place for people with dementia
Keep a folder and letter of everything you are given ( I also use the app turbo scan ) to convert paper to pdf. )
Carehome can be actually lovely places and mean that person is safe now .
You get what pay for in care generally .

Your story sounds similar to mine .
Channel your inner Mary poppins and have a line in the sand . Good luck x

Get some sort of tracking dsvice and take an up to date photo. My granddad has vascula de mentia. Last year he ended up in accident and emergency and he managed to run away. He was eventually found at the bus station. He is usually unsteady on his feet but as soon as you take him inside a hospital he turns into superman.