To ask for your experiences with parental dementia?

[Norrisville]

I'm travelling home (fairly long distance) this weekend to sit down with my sister and figure out how we can help our mum. We've suspected the onset of dementia for some time and it's getting markedly worse. My sister has taken her for assessments and the outcome is variable - she seems to 'perk up' when she's talking to professionals, but then day to day it's becoming more alarming just how much of her short term memory has gone entirely.

We're both feeling a bit lost - we've done lots of online research but I guess we're trying to find some sort of map through it all.

If any of you have been through this, do you have any advice that you wish you'd been given eat the beginning? Any sources of helpful resources we could look at to help us figure out what we need to make sure we put in place for her? TIA...

Get yourself onto the elderly parents board. It's in 'other stuff'.

Don't over commit. Practice self care. Be prepared for crisis point.

Don’t expect any care help to be provided quickly , everything takes so long to organise , and you’ll be watching your loved one deteriorate daily .Make sure you look after your own health , don’t run yourself into the ground x

Plan for a later stage than you think you need to, because it gets ahead of you.

Do you or your sister have power of attourney? Maybe too late but try if you can. Up you can download forms from gov.uk.

There's a whole dementia board OP.

POA is essential.
Assessment definitely to get carers in/funded

Towards the end one of us pretty much lived there but we were lucky to be able to keep my parents in their own home.

From signs to decline/passing was only 5 years.

We split care/medial stuff and legal/finance between us. To share the load according to who was able to be more present.

Dementia board/elderly parents is very useful

You need to get Power of Attorney as soon as possible to avoid future problems. It will help if you know your Mothers financial position as you will probably need help in the way of carers. If you know her neighbours see if they would let you know if they have any worries about your Mother

Try to talk to your Mother about her earlier life, look at photos and talk about the people in them. Embrace the good times and deal with the bad times as best as you can Remember to laugh together as well as crying together

There’s an elderly parents forum on here . The cockroach thread is very useful to keep your sanity
watch teepa snow on YouTube to get a good understanding of dementia caring . She’s amazing, wry, funny and excellent
power of attorney - get it now.
attendance allowance
get the gp involved, get your mums permission to let them talk to you if poss
understand social care in this country is broken
social services will not help if you have cash or will let you step in all the time
the bureaucracy and the law is kafkaesque
Keep a folder of everyone you talk to , emails sent , medications . Keep copies . Do your research - learn the hospital jargon You’ll be endlessly sending info to docs , a&e , social services etc
people with dementia are prone to falls and pneumonia
get help in as soon as possible - you’ll need to pay . Good care is not cheap . Start off with companionship
There’s plenty of aids like memory clocks but they all eventually become useless
get your head round the fact that dementia is not just memory loss . It’s a brain slowly shutting down . My mother could write a shopping list but she couldn’t read it back . It’s the bizarrest thing .
this can go on for a decade
your parent will have no idea and can become defensive . It’s very isolating for all . It’s like living on sand for them and they cling to you . They can mask . Be glad very glad if they have “happy bubble “ dementia.
decline can be slow or go down in steps all of a sudden
dementia is a devious horrible thing and a journey that seems to never stop
keep your boundaries and look after your own health . It’s exhausting Join a career support group. Don’t be afraid to explore care home options in later stages. They are not all sad places . It takes a team at the end. You cannot do it yourselves
there will be days when there is still laughter and a good quality of life . I wish I’d know all this at the beginning .
Good luck x

Contact your mum’s local area Age Uk branch. See what dementia support is available. However be warned the services are often restricted to people with a formal diagnosis but it helps to find out what is available.
Also try this organisation:
Admiral Nurses

There are pendant alarms that can help with reassurance that mum can seek help if she has a fall or gets lost. There are options that include GPS tracking. You might not be at that point yet but sometimes it can be better to get these measures in place and a habit before dementia progresses.

Personal alarms for the elderly-explanation.

Wow, thank you so much for so many quick responses, I really appreciate it. I'll go and check out the Elderly Parents boards, I'm relatively new to MN so still finding my way around, thanks for the pointers. I'll make lots of notes from here to take with me at the weekend - I seem to recall my mum giving me and my sis POA years ago in moment of foresight, I think one of her friends was dealing with a parent and she decided to get ahead of the game, but I wouldn't have a clue where any of the paperwork is or what it means. At the time we all thought it was a bit amusing 😕

And make sure your mum’s neighbours have a way of contacting you directly in case they find her confused or just want to flag any concerns up with you. That would give you reassurance too.

Age uk are helpful.
POA - power of attorney- is good at this stage. I would also go to GP appointments with her to explain what's happening from your POV and hear what the doc says.
I suppose the rest will be dependant on how dementia affects your parent specifically and that will inform the type of support/aids/care is appropriate.

Also, please seek out support for yourself. It can be hard at times.

Have you contacted Dementia UK, they might be able to help.

Have a look at attendance allowance. It's not means tested!
I'm sure your mum would qualify (I think you have to be over a certain age otherwise there's a different benefit you can apply to claim)

We'd never heard of it before but now all my grandparents are getting it and it's like £90 a week. Not to be sniffed at

PoAs are all registered centrally so you should be able to check.
Call it Mild Cognitive Impairment if they prefer.
Get them into a social routine and support them to keep it up
Never contradict- agree and move on
Learn new things to do with them
Try to cut down meds- they get hard to take
Put time aside to just be with them, not fixing stuff
Good luck

you need a POA for Health and another for Financial Affairs and you have to get them while your mother is still able to consent.

We used a firm called Nellie (social workers) who provided a report to a solicitor to say that mum was able to give consent. i don't think that that is essential but mum was on the cusp.

If we had waited any longer and failed to get it, everything in an already difficult situation would have been a nightmare-we couldn't even deal with the gas board, or the GP on her behalf until we were able to show them POA.

Things will get worse and you will need to sort all manner of things out, as your mum slowly disappears. Make it a priority and look in to it before the week is out.

That's the very best advice I can give you from the hell that is dealing with Alzheimer's. It will make life easier.

Definitely this. You can't believe how quickly they slip from one stage to another and how unexpected problems arise. Also, you don't see them getting worse because you see them all the time. Have plans in place to meet each declining stage. You might not use them, but making good decisions while you have time is better than making hasty ones on the hoof.

Start looking at dementia homes. She's not ready yet. But knowing the good ones will put your mind at ease. You never know if something might happen when she might need sudden, maybe temporary, care. Enquire about respite care. It might be necessary if you go on holiday. Or just for a break. Dementia is exhausting.

Don't try and predict their future behaviour on who you've always known them to be. They change.

Obcs get PoA. But get her to sign a letter for the gp that you have access to her files and can speak on her behalf. It will save you so much time in the future. If you can't get the gp to do what you want on her behalf, write a letter about the problem and ask them to put it in her file.

Share all the responsibilities between you. Don't leave it all to one sibling. The one that is doing hands on care will be so very challenged and exhausted.

Enjoy her now. Every day is her best day because the next one is always going to be slightly worse. I was so busy worrying about and fighting against the idea of losing her, that I wasted precious months of just being with her and loving her.

Find good carers, a good home, get all your benefits - she will cost a lot. Be prepared. Be kind to your siblings and look after each other. It's a long, lonely journey and all the fighting to get the best for her is down to you children. People get tired. Don't fall out.

Yes, trt and get the attendance allowance as @Hungrycaterpillarsmummy says but be aware it is a form and a half!

Yes it's 30 pages my mum just did it for l my grandparents so 3 x 30 pages. Poor mum!

But deffo read some tips how to fill it out etc
You can use the money for anything

Also, look into a key box-a box on the wall containing the front door key that can be accessed by carers or a neighbour or whoever you give the code to.
There are also alarms that can be worn on the wrist or as a pendent that are connected to the phone.
If your mum presses it or falls (they can tell) they ring to see if everything is okay, If the phone isn't answered they call you or the ambulance and a voce comes through the speaker to reassure your mum.
The system can also be connected to a bed pad and the alarm goes off if your mum doesn't get back into bed after a trip to the bathroom. It might be a period of 15 or 20 minutes.

One thing I think it’s really helpful to know is that you don’t need a diagnosis to access care. Sometimes getting the diagnosis can take a long time, be fraught with setbacks and take all your time and mental and emotional energy which could actually be better spent getting care in place.

Also, as the person flying in, whilst your sister has been dealing with all of this, do not underestimate how hard that has been for her and do not let a single hint of a word of criticism pass your lips. Your stance should be one of wholehearted gratitude and support.

Also a diagnosis of dementia is not the same as not having capacity .

UK law is decision specific and quite nuanced . So the poa for finance can be actioned by your mum even after diagnosis depending on what stage she is at . But even when my mum was judged by SS to have lost capacity to decide or have insight into her care - ( she was beyond resistant to care - she believed she was fine and we were all batshit ) she still had the right to choose what she ate or wore etc.

some banks and institutions are still awful to deal with even if you have poa . They make you feel two foot tall ime

I thinj