Mother-in-law with dementia. So overwhelmed

[Waterlogged]

Hello,

I'm looking for advice on behalf of my partner, whose mum (68y) was diagnosed with frontal-temporal dementia earlier this year. She lives alone in S London and is able to get out and about (with encouragement), but is quickly becoming more anxious, confused and reluctant to go outside. Recently she went to visit a familiar place and suddenly didn't recognise where she was. She also struggles with managing money, eating regular meals and taking and 3x daily medication.

My partner has applied for PoA (health/legal), which is pending. He's also set up a timed dossete box to dispense her pills but is unable to visit every weekend to refill this, meaning MIL often misses/takes the wrong dose.

My partner is looking to move his mum closer to us (W London, where she grew up). He is an only child and there's not much family around to help. Plus we have a new baby so he's juggling a lot.

Mother-in-law owns her home and the plan is to sell this home and rent/buy a flat in sheltered accommodation nearer to us. Is this a good idea? Should we be buying or renting? She also has 25k in savings. Any other options you'd recommend?

If you have experience in this, what would you do? I don't even know where to begin.

Thank you

I would ask MN to move this to the elderly parent board.

I'm sorry to hear this.
I actually think you should start researching care homes. Your MIL will need one at some point so it's best to be prepared.

And come and join us on this thread.

https://www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3

Have you applied for Attendance Allowance for her?

Moving someone with FTD at this stage is likely to completely fail unfortunately as they can't recognise things (their eyes see, the brain doesn't interpret the signals, same with sounds). It also makes 'normal' dementia aids very difficult for them to use.
I'd start looking for a care home close to you that has a dementia unit for later as she could settle much easier now and you could all pop in frequently to see her but know she was safe and looked after.
My mum had FTD, diagnosed in her 60's when my son was very small and it was brutal so I really feel for you and your DH

There may be things you can put in place for her where she is now. For example, private care visits, ideally a few times a week. The carer could refill the pill box on a set day (if they are allowed to do this) and prepare a quick meal for your mum (eg quiche and cucumber on a plate etc).

It also may be possible to get her Meals on Wheels - my mum gets this at lunch time every day. Carers help her prep morning and evening meals, but those end up as being sandwiches, so at least the MoW means one hot meal with veg and pudding every day.

But agree with others - if you try and move her to a new flat or neighbourhood, her independence will probably plummet as she won't be able to form the pathways from sofa to fridge to bed that she has for her current place, nor will she be able to learn a new High Street etc.

Really helpful advice, especially the advice not to move MIL. Thank you all. Keen to read as many replies as possible.

@TheShellBeach We are in the process of applying for attendance allowance

If she's already not recognising where she is, I think her time in sheltered housing is likely to be short lived. If a resident in SH is in any way disruptive (eg disturbing other residents at night) they are likely to be given notice.
I would research care homes near you instead, maybe organise carers to come in to her current home for now. Does she have capacity to sign legal documents for a house sale? If not you will need to wait for the LPA to be authorised by the OPG so you can act for her.

Don’t underestimate the importance of regular medication. Sheltered housing won’t be able to help with this. If she is reliable provided it’s in a dosette box, fine, but once she starts missing tablets, she will need assistance.

@EdgeOfSixty @MereDintofPandiculation Thank you both for explaining the limits of sheltered housing. This is helpful in guiding our decision moving forwards.

@EdgeOfSixty MiL still does have capacity to sign for a house sale

I live in sheltered housing @Waterlogged and your mother sounds like she would struggle. I actually think it would be unwise to move her anyway, even if she was accepted.

We're all completely independent in this complex and our warden is only around for 2 hours during the week. There is no cover at the weekend.

Moving your mum to an unfamiliar place would be very hard for her. She wouldn't settle. She'd be forever wondering where her "real" house was, and I suspect she would wander.

Try to get care arranged at her current house, until she needs to be in a care home. I was a dementia nurse before I retired, and matron of a care home myself.

Finding a suitable home takes time and effort, but it's well worth doing sooner rather than later.

Don't over-estimate her abilities, and don't forget that she will gradually deteriorate.

Hello, occupational therapist here.

I believe she is under the threshold with her savings , so she may be entitled to some help. Have you considered getting in touch with social services? You can also call your local referral unit and explain that you are struggling and worried! They may be able to arrange help in the way of carers if that's something she would accept. You could also install cameras in the main rooms , and falls sensors if you were worried about her falling.
Writing things down in big print and putting them up on walls and doors, getting a big clock with date and time to keep oriented to time

Re property , I've had a lot of patients relatives unfortunately have to sell up to pay for care , generally if they can't afford the care themselves (awful system)
Perhaps sell the property and buy something nearer to yourselves , something smaller and more suitable

We always always promote independence and keeping somebody in their own home environment though! So it would be better as others have suggested to really set up as a safe environment . Care calls, meals on wheels, falls sensors , life line pendant to press if she falls (if she forgets to press button falls sensors will be an idea)
Wheeled zimmer frame in a funky colour if she uses one so she notices it and remembers to use it!
Putting in bannister rails on stairs and as I say if you contact local referral unit you could possibly get an occupational therapist to come and do a home visit to put things in place. Social services to arrange care calls

There is so much out there lots of little services youd be amazed , all with an aim to keep an individual safely at home as that's always the first port of call! :)

Hammersmith & Fulham Provide free carers. And pretty much everything else free too.

Find your local carers’ assn and get local
know how from them.

MIL needs a care home before long. Dementia isn’t just being a bit dotty. Her brain’s dying fast but her body isn’t, and won’t for about 20 years, depending on
how fast FTP goes.

So sorry for you all.

I used to work with people with dementia. It is true that some managed to just about function in their own setting where everything was familiar, but making a move often precipitated a decline - too much new stuff to get their heads round when their brain was failing.

It is a dilemma as she clearly needs a bit more support just now. It might be worth contacting the local Age UK or the Alzheimers Society as they will be up to speed on what local help is available.

Also there are usually support teams and specialist community nurses from the NHS who can provide advice and support. So get in touch with the local hospital.

My OH had Parkinsons and was pretty nuts towards the end if his life - the specialist Parkinsons nurse based at the hospital was my lifeline. And there should be an equivalent for those with dementia illnesses.

If you move her, she will be all at sea - the voice of bitter experience. We moved mum to a sheltered flat near to us. she was at the very beginning of dementia,
but we found she could not learn anything new: she got lost whenever she left the flat, and could not learn how to operate the lock, the microwave, the oven. Conversely, any appliance she brought with her she could use - sheer muscle memory,
just as she could still navigate streets and buses near her new home. Her brain was simply not plastic enough to absorb and retain any new info of this sort

so best leave her where she is with a package of support, or move her to a care home near you

NB: we ended up paying two lots of stamp duty and estate agency fees, because she had to
move into a care home in less than two years. And yes, the warden at the sheltered housing block was very much on her case from the beginning

Www.raredementiasupport.org
As others have said ftd is so different to what people think of with alzhiemers.

i echo the recommendation to do what you can to support your mil staying in her familiar surroundings as long as you can.

ask her local authority adult social services department for an assessment to see what support they can offer. They will probably also do a financial assessment to see how much they pay and how much she pays for any help. It sounds at the very least having regular carer visits to ensure she is taking medication works be of benefit, and getting her used to them now will help as her condition progresses and she needs more help.

regarding her medication, many pharmacies will prepare a weekly blister pack with medication already dispensed for each day/time (morning/lunch/evening/bedtime). You need to get the gp to agree to a weekly prescription and find a pharmacy with the capacity to take it on. My mums pharmacy is the one attached to her gp surgery and will also hand deliver the pack for a small fee (£36 per 6 months).

Look at Pilltime (www.pilltime.co.uk) if you think your MIL is still able to remember to take them if they are labelled like this.

@PermanentTemporary thank you for posting about Pilltime, I have been looking for something like this. The gp said today that they won’t do nomad / blister packs as no pharmacies will authorise them. Not sure where that leaves anyone who needs them though. Hopefully this might be an option.

I'm so grateful for all replies. I read every message to my partner, who thanks you all. This is a big help

Such bad luck at 68. Not easy for any of you.
I'd like to suggest your partner puts your DM on FindMyFriends if she is still able to use a mobile and takes one out with her on the trips she still makes..
If she doesn't take her mobile, I'd put an AirTag in her handbag or jacket, just for peace of mind, in case she gets lost. I know she is venturing out less and less, so the need for this might just be short term.

And a key safe box as soon as you can plus a friendly neighbour's phone number.

With a little one, getting from west to south in a hurry could easily take you 2 hrs. Knowing there are keys available takes a little bit of pressure off you and DP.