Can anyone help me get started with mum's dementia?

[Kwackerly]

Background, mum's nearly 80, living alone in a retirement home but without any help or contact with anyone other than me. I am half hour away by bus and see her a couple times a week and talk multiple times a day on the phone.

She's been diagnosed with vascular dementia back in December, but declined rapidly over the last few months. She's now clearly in a bad place, can't remember things day to day, writes herself millions of notes, she's also very anxious as she recognises shes not remembering and finds it really scary.

We saw the doctor together in February who referred her to the memory clinic, which was a phone call and then discharge- they said watch and wait? I called the doctor yesterday as she's definitely got worse over last few months and is very upset and struggling to manage her anxiety, although she's coping ok with day to day living.

He said I should call age UK to see if there are activities she should do, has prescribed 14 tablets she can use when she gets really panicky and is arranging a blood test. He says that's all he can do apart from her giving up smoking (5 a day, she's nearly 80, realistically not going to happen!).

I have read people on here talking about brain scans etc, is there a point when this happens, and does having this done help in some way? The doctor pretty much said there's nothing he can do for her.

Are there other things I should be doing? Starting to get really concerned now as she is so frightened all the time. She's resistant to taking anything daily and is capable of going for walks etc on her own but I'm a bit worried she's seeming to go downhill so quickly.

Any advice from people in similar circumstances would be very much appreciated. Thank you.

All having brain scans seems to do is hasten diagnosis. My MIL has vascular dementia, Alzheimers and frontal lobe shrinkage... she had a brain scan after a fall... we thought she had damaged her brain in the fall, but conversely, it was the undiagnosed conditions that caused the fall.

There are some medications that can slightly pause things where they are, but deterioration is (currently) inevitable. So I think the doc is probably right.

Memory aides are useful. MIL has post it notes for things she forgets "don't flush wipes" beside the loo, "John visited on x..day" beside her chair... she also has a dementia clock, large text/ numbers tells her the time and date, and what day of the week it is as well as morning/afternoon.

We got it as she went to the doctors at 4am instead of 4pm, because her clock said 4 o clock and her appointment calender said to go to the doctors at 4.

Life is difficult. Do you have power of attorney in place for health and finances?

@BeyondMyWits thank you so much for replying, that's really helpful.

I don't have power of attorney, I'll look into that.

I was thinking of a dementia clock, she has Alexa and loves that and can work it ok so that's been helpful. I have tried memory aids but she tends to put them away not knowing what they are for, a large wall calender etc. I'd like to get a tracker for her as she goes out and wanders about a lot. If there's anything you can recommend please do say!

And I am sorry to hear about your mum. It's so hard.

How does she contact you? How about one of those phones with preprogrammed number in so she can call you at one button?
Contact your local social services re telecare for the tracking device/falls detector etc, they may have in-house or may refer you to private company.

Sort out POA asap. It will take a few weeks, but if you delay until she is no longer understanding what she is doing (re the POA) then it will be very expensive, complicated and lengthy (months) because you have to involve the court system.

Then, ask your local social services to come and do an assessment on her. They may identify a range of support available, tailored to her actual needs.

Good luck with the journey ahead.

Definitely agree te getting a POA in place ASAP. Especially if she's recently been to memory clinic and they've not raised any concerns regarding incapacity.
Do you know if they did an assessment called an ACE-III?

@ICouldHaveCheckedFirst

Sort out POA asap. It will take a few weeks, but if you delay until she is no longer understanding what she is doing (re the POA) then it will be very expensive, complicated and lengthy (months) because you have to involve the court system.

Then, ask your local social services to come and do an assessment on her. They may identify a range of support available, tailored to her actual needs.

Good luck with the journey ahead.

this x100 i had to help someone who had left it too late and it was a complete nightmare.

It is hard, we now have carers in 4 times a day to her, to deal with her medication, hygiene and meals as well as just to chat and help her get ready for bed. That has really helped. Connecting with others multiple times a day is keeping her mind and movement going.

It started as just being once to sort out her medication at the pharmacy and make sure she took it when needed, presented to her as "for our peace of mind". Her care needs have just grown naturally since then and because she knows them, she's happy.

We haven't gone down the tracker route, but have put notes in all her pockets and handbags, on her keys etc with her sons' phone numbers on.

Would look at power of attorney sooner rather than later, as it needs to be in place whilst she is deemed capable of consenting to it, and it really, truly, makes it so much easier if you need to communicate on her behalf.

and I'm sorry you're both going through this
you say 'retirement home' does this mean there is any support?
I had a friend who had early onset dementia and she remained living independently with a lot of tech support (eg she had alarms on her front door, I can't remember what else as it was a while ago) also having carers come once or twice a day.
good luck

I remember with a friend (don't know if this would work for you) she introduced 'a friend' to her mum...and the 'friend' used to just 'pop round' most days...for a chat...it worked for them as her mum would never have tolerated a carer

Definitely sort out power of attorneys, both health and welfare and financial.
I would be asking the GP to refer back to the memory clinic as there's been a deterioration.

We haven't gone down the tracker route, but have put notes in all her pockets and handbags, on her keys etc with her sons' phone numbers on. It's useful to add medications to this. For anyone else who is thinking of doing it, I wouldn't add home address in case the wrong person reads it.

Age UK are fantastic, can help you do the assessment for attendance allowance which you can then use to pay for some support.

I totally feel for you OP. After 2 years of fighting my aunt was finally diagnosed with Alzheimers with dementia in May. It's been a horrible time, mostly as she is now extremely paranoid and continuously calls the police on people trying to help her saying they are breaking into the house and stealing things (last week it was parsnips out her freezer). My problem has been that she is extremely able physically and in minimal interactions seems perfectly normal. It is only when you spend time with her you realise how bad she is.

My aunt made me return the life line that I got her, refuses carers and basically insists she is fine, social services won't get involved at all as she refuses them and is deemed to have capacity.

I agree regarding the power of attorney. Be warned it takes forever. I sent the forms off in early May and they only today took payment for one of them... Not a whisper on the second one, in the same bloody envelope!!

When you say retirement home, do you mean a care home where she is looked after, meals provided etc or is it an assisted living situation where she has her own flat but with help if needed? It might be worth looking at options where she would have more people around but you could still go and visit.

If she's had a diagnosis I'm not sure more scans are of any benefit. My dad had mixed dementia but with vascular as part of that, and what I was told was that medication can be prescribed for Alzheimers but it is not effective on vascular. However, that doesn't mean they can't prescribe her something for depression or anxiety. I would go back and push them on this. Sadly that becomes one of the things you have to do.

As pp have said, get power of attorney. Make that your absolute priority while she still has some capacity. I got a solicitor to do it for me working remotely.

Some great suggestions on here already. Including getting POAs on both Finances and Health, talking to Age U.K. and applying for Attendance Allowance. Incidentally, if she's granted Attendance Allowance it's backdated from when you apply so the sooner you apply the better.

Other things to think about are asking her GP if she has a Social Worker. The SW should be able to help to sort out any daycare activities that might be running in her area. Most of the ones in our area are by SW referral only.

Another thing to consider is the Herbert Protocol. This is a document that you fill in just in case she ever goes missing. You can fill it in and keep it on your phone, just in case. You may need to Google Herbert Protocol and the County she lives in as each Police Force seems to have slightly different information.

You can also fill in a This is me booklet as it's useful for any carers or if she has to go into hospital. Again, you can keep it on your phone just in case you ever have to email it.

Is it a retirement village that she's in? Have you spoken to them about her condition?

Does she have a cleaner yet? They are often useful for keeping an eye on your DM? My DM has employed hers through the retirement village which she lives in.

Sorry you’re dealing with this sad situation for your Mum.

I don’t have advice as such to offer, but can I suggest you look at the Herbert Protocol. It’s a pack that you complete the info for so that in the case of someone wandering off / going missing, all the info the police and search teams need is close to hand, it can make a huge difference to the outcome of any search.

So sorry to hear this. It’s appalling that people get diagnosed then just dumped - happens round here too.

As above

• POA immediately, while she can still sign it. Top priority.
• Register as her carer with her GP, get her permission to talk to GP on her behalf registered with the practice.. Get her registered with whatever internet service they use and get the apps and the passwords so you can order her meds etc
• sort banking and money: become cosignatory or get 3rd party access to her current accounts. Find out what savings she has where and do whatever you need to do to make sense of them (I discovered mum had 5 forgotten post office savings accounts, one with £17k in it)
• register with Dementia Connect (website, lots of good info)
• when she was diagnosed she should have been signposted to Dementia Navigators (or whatever such service is funded locally). Track them down (Dementia connect may be able to help, or her GP)
• look up your local Age UK or Age Concern as well as the national one, they will know what’s what locally and help with Attendance Allowance
• definitely name and your contact details on her at all time if she likes to go for walks (we had a client who liked to go ‘shopping’ in M&S…)
• Does she have a falls/careline alarm?
• Spring Chicken (website) have great gadgets for people with dementia
• make sure you always have taxi money available for emergency calls
• consider a Social Service assessment for care - they can do this whether she has savings or not - so she is on their radar and they can refer her to other services too
• does she have a gas hob? Consider switching to induction if you think she could manage it.

This is such a difficult journey for you and for her - if you can try to educate yourself so you have some idea of what might happen next so you can anticipate and avoid any crisis.

Thank you so much to everyone who commented. It took me days to make myself look back at this thread, it was interesting that I had to kind of make myself come back. I think it's something I can only think about in small doses, when I am feeling strong.

So there's my long apology for not replying before now!

I'll now read and respond, and again, I really appreciate the input!

@MichelleScarn and others who raised this, I will look at POA this week.

The memory clinic said nothing really, just to watch and see how she goes. They didn't mention what assessment had been done. I have not talked to social services yet as she is able to cope within her routine so far. I know this may not last, but while she is managing I don't want to frighten her.

@BunnyRuddington she would, I think, not want a social worker and would definitely refuse assistance! She's well aware of her memory problems and while she can manage I want to keep her calm and as normal as possible. I will note that for later, argh, I don't want to do this. Sorry.

@BeyondMyWits that's really useful advice on how to start with carers, and I shall take a copy of that for when the time comes.

@StillWeRise she's living independently but it's supported housing (anchor), there are cords to pull in emergency and it's all very easy access with person on site once a week. It's a great place for her to be in as I think she can live here for a long time with support, hopefully.

@CrotchetyQuaver I'll call the GP again and ask for a referral back, I didn't know I could do that. Thank you.

@Purplewithred so many good ideas. I will make a list, really appreciate your input. She has an induction hob luckily and banking is another thing to add to the list.

She doesn't want to take calming tablets every day, I do understand that. I feel for her though, I hate that she's scared by this and there's only me to help.

to all of you. It's so hard and I hope you are all supported as you try and cope.

I now need to do all these things! Why don't GPs give you a list like this, it would be SO helpful.

[Flowers] for you both but also thank you for starting this thread, it's really helpful x

@Kwackerly really sorry to hear about your mum.

I'd echo all the helpful suggestions already. Especially POA. The Deputyship process is long and expensive. Nearly a year now for me, and I've been left in a complete legal and financial nightmare. Tens of 1000s of pounds of unpaid care home fees. Red reminders every few days. Unable to utilise mum's assets (the house) on her behalf whilst being responsible for the upkeep. It's awful.

But even more important is to look after yourself. This can and will overwhelm you.

Switch your thinking to your mum's needs, not her wants.
So she doesn't want a social worker....she needs one.
Your mum is understandably terrified and will want you to do everything and manage everything. You can't. Get help and support now. Dementia is a long journey.
I'm sorry this sounds so negative but I almost destroyed myself trying to do it all. The progression of dementia means it's never enough.