We're at crisis point...

[EspressoPatronum]

Any advice would be really appreciated, we need hello but don't know where to turn and to be honest our mental load is so heavy we don't have it in us to figure it out ourselves. Hence this thread- I'm hoping someone will be able to spell it out for us.

About 2 years ago mil was diagnosed with mixed dementia (Alzheimer's and vascular dementia). Dh is an only child and fil passed away a number of years ago so the responsibly for looking after mil came down to us. It's safe to say we were not expecting to become carers at this stage in our lives (I'm early 30s, dh a bit older).

About a year ago it became apparent that mil couldn't cope any longer with just the chairs we were able to manage (as she lived some distance from us) so we moved in with her to be able to help with eg taking over her medication, making sure she is eating okay, keeping the house clean.

We have 2 very young children also, and my dh had to commute to our old City until he could find a suitable job in this area (which only happened at Christmas, so quite a while of a very long, stressful commute).

Tonight there had been a 'straw that broke the camel's back' type moment where we have realised hope much we are struggling- we are doing okay with the everyday caring/practicalities but the 'big' stuff had been completely neglected in favour of day to day survival.

Examples of the 'big stuff' include- finances, which we have done nothing about, including looking into attendance allowance, and trying to sort out a mess of a shares portfolio that mil put some of her savings into early on in her diagnosis, before we had moved in.
Our house in the city we lived in is just sitting empty, we are trying to sort out getting it rented, but haven't managed to get very far as it needs some work done on it.
I'm sure there are other things, but honestly I can't think of them now as I just don't have the head space after a day of caring for the 2 children, mil, and making sure the house is clean and safe...

Can anyone point is on the direction of who can help us sort our shit out with regards to the big stuff? We're drowning.

Oh lord, didn’t want to read and run. You have been very selfless in moving in with your mil, you really have, especially at short notice.

You must prioritise attendance allowance - that will help. You could pay for some care to give you some time to sort your stuff out.

Do you want to stay living with your mil? Or not? How long is she likely to live? Are there good schools for the dc near her? Can you have a normal life - play dates, socialising etc - while living with her?

Shares portfolio - ask a financial adviser to take a look.

Your house - what needs doing to it? How long will it take? Could one of you move back to it to supervise work or do work while the other looks after dc and mil? Or not?

Contact Age UK for help and advice too.

This sounds really tough.🌺🌺
Can I suggest contacting age uk or carers association for help- do you have power of attourney in place?
Also, have you contacted adult social services via the council? They may be able to provide an assessment and point to support.

I work with people with dementia (currently in a hospital, previously in a specialist nursing home).

The first thing I would say is that finances, your house etc are not ultimately “the big thing”. “The big thing” is your own mental wellbeing & the happiness of your family. Ironically, the very things your MIL would prioritise without the dementia.

You have tried (and harder than most by the sounds of things - I mean, you have relocated your whole lives?) but if you are no longer able to cope with home based care then you need to look for residential care.

Does MIL have a Social Worker? If so, you need to tell them you can no longer manage the arrangements.

Will MIL have the means to self fund residential care? If so, start looking at potential nursing homes tomorrow.

I have nothing but admiration for families who try to care for relatives with dementia at home, but at some point the tricky becomes the decidedly difficult & then the impossible.

You matter too. Please remember this.

Speak to the Alzheimer's society, they should be able to help with some of the practicalities, and may have local group that may be able to help you.

Also, without wanting to give you something else to do, Id like to bring to your attention the Herbert Protocol, if you google it will give you the info, it won’t take long and could be very useful if your mil wanders at any point

Thank you.

Yes, dh had poa. Thankfully we managed to get that in place before everything went to hell.

Goldeneagle the plan want really to stay living with mil even this long, but the way things have worked out we are a bit stuck for now. Not ideal but the least of our problems really. She lives in a lovely little village, excellent schools around etc. The main problem is house and rent prices are ridiculously more than we could afford, which is why we are trying to rent our house rather than sell- when we (very probably) lose this house we don't want to have no house at all, even though we wouldn't be able to move back to our house as it won't be suitable for us any more by the time that happens.

Age UK and carers association are good shouts, thank you. As is a financial advisor.

Dh is really struggling today, basically he feels like even with the help of eg age UK, social services etc he still won't be able to cope with everything we need to sort out and that he's failing everyone. The problem is there is literally no one else to help take the burden.

Cross posts, @coffeerunner thank you, to be honest, the day to day 'caring' but is the only bit we're not too overwhelmed with as of yet. Mil is managing okay with us around to keep on top of the practical stuff. We are aware that there will be an end point though, we don't intend to try and care for her at home indefinitely.

First of all, hugest of hugs. I moved to my home city to help look after my dad. It isn't easy, always being 'on'. There's good advice above, particularly Alzheimer's UK etc.

My advice about all the paper/financial stuff? Pick one thing at a time. There's only so much you can hold in your head. Maybe sort out renting your place first? Then you'd see some benefit from the income and then one job at a time after that. If you pick one, then you know you'll be able to sort it and then the next, and the next. Doing one thing will give you a bit more confidence and head space too.

Very best wishes to you. It's tough going (I dealt with sick parents in my 30s too).

Also, pick something, anything, in your week that's just for you and your family. Even if it's just a weekly swim or something , you need your own space in the week x

Ps a local befriending service could help give you the weekly trip out/respite

Thank you Ginger I find it hard when friends ask how things are going, like I can't really be honest because they are in such a different place to us... I think there might be a befriending service near us, I'll definitely look into it.

Mil still has a few friends who call and take her out occasionally and still gets invited to neighbors BBQs etc. She's also not yet at the stage she needs 24hr supervision so we still have a sliver of normality at the moment. Obviously that is going to change though, and who knows how quickly...

The problem is arranging a move to a care home at the right time. I'd recommend you visit a few local ones now and see which you feel is the best fit, then see what their application procedure is. If they're full, they operate a waiting list. Hopefully, selling your mil's home will pay for her car.

Would she accept carers now? Could you interview some, see who would be a good fit for your mil, and get that in place now? Attendance allowance will help pay for it.

As a general rule, I would say outsource everything you can, and keep to yourselves only those things which only you can do.

So if there are funds available, get carers in to do some of the work you do, or even just get a cleaner and a gardener, and use the time released to sort out renting your house, then to sort out attendance allowance.

OP I'm a bit unclear what the options are

is one option for her to go in a home, or are you determined to avoid that?

What I'm thinking is that you could sort out renting out your place, then if she needs to move to a home anyway, you will be living in her place - is that what you want?

It sounds like you are bending over backwards to put all her needs first but tbh that might not be the best solution for the whole family.

you mention the shares portfolio - presume you mentioned that because your MIL needs the money, so does that need to be sold?

Rosa no we're not determined to avoid a home, that is where mil will have to go eventually. But right now it doesn't seem appropriate for her needs. She can't live alone with us a 2 hour drive away, but doesn't need the level of care a home offers. We had intended on living with her while we found somewhere suitable close by but a mixture of circumstances and rent/house prices have put the kybosh on that.

The shares portfolio is just a source of stress for dh really. Mil took it out early on after her diagnosis via a home visit from a financial advisor fil used before his death, after telling us she didn't want to put money into shares. One of the issues we have is that she hides post so we're not sure if we even have all the information about it.

Thank you for all your advice everyone by the way. It is definitely helping.

Would it help for the two of you to book a couple of days off work with the specific aim of sorting out as much as possible. Day 1 Write a strategic list with long term goals and then a separate tactical list of all the steps you need to take to get to the goals. Day 2 start with the key first steps towards the most important goals. You may find that giving yourself the space to get this done will take a huge mental burden off you and DH. If the dc dont go to nursery, book a babysitter or ask a friend to help out for the morning.

That would be ideal seatoski I'm on maternity leave atm, but unfortunately dh isn't able to take any leave right now (he's only been at his new job since Christmas so not accrued much holiday, and currently in the busiest period for his company so leave isn't really allowed at the moment..) but my mum is coming to visit in a few weeks so could potentially use the weekend she's here to do that 👍

Great, talk to your Mum and DH and make a plan, try and leave the house to do it. Can you go to the library, a coffee shop, a friends dining room table? Use the next couple of weeks to jot down ideas, goals, reminders, contacts, gather leaflets and then treat it like a business meeting. Please dont just think about the immediate stress points. Build a plan for the next 10 /5 /1 years or you might find yourself doing something that helps for the next couple of months but really causes problems long term

I rent out my property, so I can advise a little on this point, due to a circumstance
I got 3 estate agents to visit & provide estimated rental price & their fees
I chose one agent, they took photos & carried out the required checks & found tenants
I let unfurnished, but the white goods are still in place
I fill out self assessment tax form to pay the tax on the income each year
I pay landlord insurance
You need a gas & electric safety report, before it is rented
You need emergency money to pay for repairs if anything breaks

You can rent your house out without using an agent, but I don't think you have the spare time or energy to do this due to the other things ongoing, unless you know someone who wants to rent

If your house is not rented, out, you still need to pay the council tax & utility bills

PS
I forget to add that I decorated my property before I moved out myself
You don't have to do this, you could offer a slightly reduced rent

My property is rented out at reduced rent, because I would rather have someone living there, than it being empty
I also allowed one pet