At what point do you do something?

[Wombat98]

My in-laws moved nearby a bit back and have then got on with their lives. However, I have noticed that my mil is becoming very unkempt and has a sore knee, which is bothering her enough not to go out anymore. She is fairly happy in herself but is clearly struggling physically more now.

They very much keep themselves very private and any offers of help are turned down. She's definitely got a dementia, which I've posted about before but refused all assessment when they lived further away. Fil keeps saying he's going to get things sorted but it never actually happens. She is very repetitive now and is sleeping a lot in the daytime too, I think. I don't get over the doorstep but DH occasionally gets to go there for a chat.

Anyway, at what point do you do "something"? And what is the "something"? When does it become neglect, albeit benign?

I've talked to the local dementia co-ordinator before but they can't do anything without a proper referral and diagnosis. I did mention there may be an issue last time I had a chat with a GP but she wasn't that interested (plenty of work on her plate already) and suggested she could call but I think my in-laws would be furious if they got an unexpected call.

We may finally have got LPAs sorted but FiL is still very much "in charge". His physical health is deteriorating tho. Both in their 80s now.

Any and all advice welcome.

Could you encourage FIL to request blood tests?
There are many, easily treatable, things that mimic dementia. He is obviously scared she will be whipped away from him and stuck in a home. It’s hard I know, have you contacted age concern? They have lots of advice and may be able to help you word it along the lines of ‘FIL, if someone came and did your cleaning you could focus on looking after MIL….it will help you stay in good health if you had a meal service a couple of times a week….” Or whatever.
It’s hard, DF is currently struggling with his memory and it’s getting to crunch time but he has at least had the assessments so we know it’s his memory not a B12/Vitamin D deficiency a UTI or something.
If DH put it in writing to the dr that he’d like DM called for blood tests it’s likely they will send a letter asking her to book for a blood test and blood pressure health check.

www.ageuk.org.uk/information-advice/worried-about-someone/

Could your DH speak to his mother’s GP?
We had a similar situation with my parents though fortunately dad took mum to the doctors once he’d got his head round the fact that she probably had dementia.
Has your DH spoken to his dad in a calm, kind way, just asking him how he is? It’s easy to get into “right we need to do something right now” mode. Your FIL is probably overwhelmed, both physically and emotionally.
Most couples hide their suspicions of dementia for a long time and cover up how bad it really is.

We've had quite a lot of conversations with FiL. He's now at a point he does say to people she has dementia but because she's refused to do any more memory tests, he's given up on trying to get an actual diagnosis.

It's definitely fairly advanced dementia or something similar, this has been going on for years and she's now at a point it's pretty bad. She does go to the GP for blood pressure checks but they don't seem to do anything else for her. They are very private tho, so who knows.

This is really more a question about how to handle it when it really is getting to the point he's managing but maybe it's not in her best interests.

Plus the local services are very stretched so maybe the alternatives are worse? Not sure.

It sounds hard. No easy answers. When my mum got to that stage we involved social services. They put a care package in place.
We contacted adult social services, but the GP and consultant had also been involved before. The consultant wrote the letter recommending a significant care package for mum.
Age concern sounds like they could be helpful in recommending where to start. I understand it’s overwhelming when you don’t even have a starting point.

It sounds like FIL is open-minded about support.
I wonder if this would work:
Point out that if he has some support in the home, he & wife are more likely to be able to stay in their home for longer, as opposed to going to residential care. AND their quality of life will be better for longer.

Could they pay for their care? He could be involved in interviewing a helper, deciding their duties and hours, etc. Home support doesn't have to be something imposed on him, could he see it as a choice to make his life easier & his wife safer too.

What if he were suddenly incapacitated -- who would look after his wife? Try to sell the idea of home support as him taking charge of his situation, not losing control.

Actually, that is perhaps the way to tackle it.

He's currently holding out having his issues assessed as he can't/won't leave mil in anyone else's care at all.

They can afford help. It's losing control that is the issue, I think.

Perhaps I should talk to Age Concern, my bp is the one that's sky high as I can see what might happen and she is definitely looking less well-kept.

Thanks all.

It really is difficult and the pathways to getting help can be so different across the country. We were lucky to get a good social worker.
Mum started off going to day care at a local care home for a bit which gave dad a break. It wasn’t long til she needed full time care, but it did act as a stepping stone - and also made us realise just how much we’d been dealing with. Dementia is gradual so you don’t necessarily notice just how much caring you’re doing (or the toll it takes)

Our actual problem is we'd be quite happy to help and are in a position to do so, now that they're local. We just do not get the chance. It's always been quite a formal relationship and I struggle as my own family is much more direct.

When my Bil visits they make more of an effort, so he's not as worried as we are. I'm perhaps as worried about Fil as Mil. It would not go down well if we involved social services without permission.

You also have to remember that they’re adults and you’re not responsible for them. Easier said than done I know. Unfortunately, it often takes a crisis for people to accept care.
Don’t make yourself ill trying to second guess things though. Sometimes you just have to go along with it and just live your own life the best you can.

Yep, I've sat on my hands and tried to keep out of it for a fair while and I'm probably writing here so I continue to do so.

But what if it does become actual neglect by not seeking medical attention?

I don’t what the answer is, I’m sorry.
Sometimes there isn’t an answer.
Dementia is a kick in the teeth, it’s horrible and destroys so much. It’s unpredictable too. They could bumble along like this for years, or there could be a crisis tomorrow. That’s the thing, you just don’t know.
You sound lovely and kind, and if you’re there to help when they want it then maybe that’s as much as you can do for now.

@Wombat98

Yep, I've sat on my hands and tried to keep out of it for a fair while and I'm probably writing here so I continue to do so.

But what if it does become actual neglect by not seeking medical attention?

The fact that you are asking strangers on MN about what constitutes neglect would suggest its likely at that stage now? ..a diagnosis would be a gateway to support....admiral nurses ( specialist dementia nurses) ...OT support ( aids and adaptations for people with dementia) ....financial support ( attendance allowance and carers allowance) and practical support .....far better to approach this now whilst your PIL have some control....because if its left until a crisis occurs then all control goes out the window....i can imagine how difficult it must be but seems like its time for your DH and his bro to take a united approach

Thanks for the kind words. I don't always know where boundaries lie, particularly coming from a family with practically none to dealing with one with rock solid ideas of privacy.

I do actually think it's bordering on neglect now, particularly with this latest issue.

I think Fil thinks Mil should still make her own decisions & will seek help herself but I think she lacks capacity. Obv that's not a decision I can make as I'm not a medical professional but she doesn't retain information.

He sits, listens, agrees but AFAIK then does nothing. She's always been a strong character & he's always tries to keep her happy. My DH & Bil don't want to rock the boat, which is how it's always been but they do listen & will act if necessary.

My own mum is older & I've had all these conversations with her. However, no-one wants to do anything that involves carers and they look to us, albeit rarely for help but ever increasing in need because of loss of mobility, etc.

We danced around the reality for a couple of years to be honest. No one wanted to rock the boat either. Stupid with hindsight but you just can’t see it when you’re in the middle. The real problem is you don’t want your mum to have dementia. And there’s nothing you can do about that. Sorry I haven’t been helpful - but I do understand what you’re going through, it’s really hard.

@candleabra. You have been very helpful. 👍🤗

Very hard to describe a complex situation in a few paragraphs. I often need to write things down to understand them & this has been very helpful indeed.

I just get a bit frustrated sometimes tho...

Mainly about how much to say or do or not say. Too much for my little menopausal brain. 😁

Is anything actually happening at the moment that puts either of them at risk or in danger? It sounds as if they are both eating well, taking care of their physical health, ok with finances, neither is hitting the other etc. So while we can all foresee that something will go wrong at some stage, right now they are muddling along ok?

You have two issues here. Firstly, the attitude of your PIL - denial of MIL dementia, privacy,desire to stay in control. On top of that you have their children, BIL and DH, who aren’t willing to step in and take control because they don’t want to rock the boat. Both these things are infuriating I would imagine, but short term I would say you have to grit your teeth and wait it out.

There will come a crisis, a moment where you can have a strong word with DH or with PIL. In the meantime I’d say bide your time but be ready to pounce with some strong words to galvanise DH into action.

You are not being neglectful: your FIL is choosing not to get a diagnosis for MIL and your DH/BIL are sticking their heads in the sand too. IMO there is little you can do but stand by, make your feelings known, and be ready to pick up the pieces when the time comes.

Been there, got the scars.

I have no filter, so I tend to leap in gob-first. It's been quite difficult watching this unwind over the last few years. But she has been well-looked after until now when it's all getting a bit much with physical ailments, so not felt I should rock any boats, other than saying she's needing assessment every so often.

Anyhow, I bumped into FiL out for a walk with morning and said he's got to get some sort of help, muttered a fair bit about capacity and decisions, physio, doctors, etc and probably quite a bit more I can't remember now. I've told BiL what I've said and DH was there, so I think that's all I can do, I think, just now.

Very helpful to read all the posts, much appreciated.

Please please get finance and health and welfare POAs in place
They are not activated until needed
Might be too late for MIL but FIL should have them in place
It might save you a whole load of difficulty and money later on down the line

I think the angst about what to do and when is part of the grief of losing parents.

In most cases you can do nothing except offer them support. Unless you have power of attorney you cannot make decisions for them.

And independence is the last thing they have.

We're very sensitive to the independence thing, particularly as they are very private.

The LPAs are in hand. I knew how important they are & so we checked after they moved. Did need doing actually. So important.

Anyway, I've said my bit now...

Bit of an update, DH had a long "chat" with his dad who said he'd do things like contact the GP, etc. last week. Thought good, good, he's listening.

Saw him last night and nope, he's actually getting a shed reroofed and the kitchen done before he tackles anything to do with Mil.

I'm pretty unhappy. I've expressed this to distant BiL, who is visiting in a couple of weeks and my DH is currently on the phone to the local carers/dementia people for advice.

FiL has had a couple of TIAs, beginning to think his judgement is affected. He's always been on the controlling side and is very organised when it comes to dealing with things, so it's all a bit difficult to actually work out if he's in denial, not wanting to upset Mil or just plain avoiding the issues.

Bit of venting as I've come out in spots!

MIL should go to the GP to get checked out for all sorts of things. It should be Vitamin B12 deficiency or hypothyroid causing brain fog and confusion. Perhaps it would be an easier conversation for DH with his dad about physical causes. Or perhaps he could offer to accompany MIL to the GP is DF is unwilling.

You, and he, can only do so much though. Try not to feel any guilt about it, they are grown adults and ultimately responsible for themselves and you can only do so much.

It's definitely a dementia or something cognitive. She had a referral from the GP already and this has been going on years now. She's really pretty bad.

However, we called the local dementia people earlier (we live in an area where the serivces are all co-ordinated as there is a lot of elderly people here) and the co-ordinator had a long chat with us. We know what we can and might do now and also what we shouldn't do. Very helpful, as has been this thread. Thanks all.