Feeling so worn out with MIL. Dementia? Neediness? Both?

[Paludarium]

My MIL is lovely and kind and wonderful in many many many ways. She would do anything for her grandchildren, she is generous and sweet and caring and kind, but oh God she is hard work and I don’t know what to do.

She is 70, widowed for many years now after death of step-FIL. Very active social life, at least pre-pandemic. Loving grandmother to my DC and her step-grand-children. Lives near us and comes round a lot, which in itself would not be a problem (really, it wouldn’t, I grew up in a big family and like people dropping in and out). BUT.

She just NEEDS so much. And I can’t tell any more how much she genuinely needs, and how much is a sort of insecure learned helplessness where she feels like she can’t do anything or make any decisions herself.

So for example: any paperwork she gets, she brings round for DH or me to deal with. Anything she needs to buy, she wants one of us to talk it through with her, then get it for her. Difficult text conversation with a relative gets taken to us, “what do you think I should say to X?” Anything unfamiliar that requires following instructions, she won’t even look at the instructions, she just goes “I can’t do this I’m stupid, you’ll need to do it.” If you try to talk her through how to do it herself, she gets stressed and gets herself into a state and then really can’t do it. It is like she has got into the habit of outsourcing all her thinking, and can’t remember how to do it herself.

At the moment we are worried she might be in the early stages of dementia, or have something else going on. She seems more forgetful and generally scatty and more stressed. So more things she can’t do, more “you’ll need to look at this for me,” more stressing, more just generally turning up in a cloud of bills and paperwork and worries and needing reassurance. Has seen GP, awaiting memory clinic appointment. Is convinced herself she has dementia and her brain won’t work any more. If she forgets anything or can’t do anything immediately, she goes right off into stressing out loud about how useless she is. It’s really sad and stressful, for everyone.

But… she has always been like this to some degree. Even when I first knew her in her late 50s, she was working in a pretty stressful and mentally demanding job and doing it well - and then she’d get home from work and phone DH and say “I just don’t know what to do with this bill from BT, can you come round and help? No I can’t manage myself, you know I’m just a daft old lady.”

But now she forgets things sometimes and loses things sometimes and has even less confidence in her own ability to do anything at all. So we are doing more and more and more and more. DH more than me, but increasingly me as well. She needs so much soothing and reassuring. But then, she always has…

We both work FT, we have young children. We are very tired. And now it feels more and more like having another child to deal with. And I keep thinking: argh MIL can’t you just TRY to make some of your own decisions? And then feeling bad because, well, maybe dementia, how unkind not to help someone who needs it. And then remembering what she was like before this and wondering if she does need quite so much of it? But how would you even know?

Oh it’s just so miserable and stressful. Sometimes I want to hire a companion for her to follow her round and fuss over her, like old ladies in Victorian novels have. Argh. What would you do?

Tons of sympathy. My MIL is very similar, except we live 6 hours away so don't have to deal with it on a daily basis like you do. She retreated into 'old lady' mode when she turned around 65, and is absolutely helpless - can't make decisions, says she's stupid, takes no responsibility for herself or her health at all. It's unbelievably draining.

I can't advise about the dementia issue I'm afraid as no experience at all, but a memory clinic referral sounds really sensible. 70 is not young but it's also far from ancient

After FIL died last summer, we arranged carer visits for MIL in her home 3 days a week. They have been great - they do the cleaning, grocery shopping, but also help with making appointments, sorting out bills, and would help with setting up new equipment etc. It may be worth looking into, as would take some of the burden off you two.

That sounds both mentally and physically draining, I'm so sorry.

I can't see her changing, to be honest, dementia or no dementia. So it's more about acceptance that this is going to land at your feet, and finding ways of managing it so it's less of a problem.

Can you timetable any of this? Eg MIL saves up all her paperwork and brings it to you at set times?
Do you have POA? If not can you get it and invoke the financial POA and manage her finances directly? (If you think she has dementia this needs to be done PDQ. Financial can be used with the person's agreement at any stage)
Is there anything you can delegate to anyone (paid or unpaid)?
Can you refuse to engage with things like the difficult conversations - "oh, so what do you think MIL?" and just agree with whatever she says (you'd have to be firm).

The tricky bit is learning to accept this is going to fall to you to sort - we've been through it with MIL, and getting over the resentment and grief (loss of Mum/Child roles) was tough for DH.

My Dad was like this. I realised that I talk over a lot of decisions with DH -after all, we are a team - and I’d find it hard if I had no-one to talk to. So I’d try to be a lot more patient than I felt.

But it was I think the start of a general cognitive decline. Very early stages though! 6 years later he was assessed at memory clinic and still only “mild cognitive decline” not dementia.

if that was a serious comment about hiring a companion, could you hire a PA for a couple of hours a week?

Maybe your companion idea is a good one? Could you find a nice woman to go and see her for an hour every other day to look at any post or worries she has and help her sort them out? It would probably cost you about £50 a week if you find the right person who has a bit of free time and is happy to just do 3/4 hours a week.

I had thought of getting a carer before but dismissed it as she doesn’t really need help with cooking and cleaning and self-care stuff. But if there are carers or similar who could do sorting out bills and plugging in the new kettle type stuff that might actually work? We could afford it easier than we could afford the time definitely!

We have (after some negotiating a couple of years ago) got her to group together all the weekly paperwork into one set time, which she’s ok with, although anything that comes up unexpectedly she will immediately call/come round/text and say “what should I do? Do we need to deal with this now?”, so you end up doing half as much as triage IYSWIM.

What’s quite tricky to deal with is that she doesn’t actually WANT to “be a bother” as she sees it, so it is hard to do any kind of even gentle pushback on anything because she’ll hear it as criticism and cry and berate herself for being useless. Or she starts off requests with “I know I’m being a stupid annoying old lady when you have better things to do, but…” and it’s quite hard to deal with that especially for DH.

But when she’s not needing things or talking about how useless she is she’s lovely and funny and kind and great company, she’s really not an awful old lady. It’s just so hard to manage all the “can you just… have you got a minute…” etc etc etc without feeling so frustrated about it.

Sorry yours is the same way Lottapianos. And ‘draining’ is exactly the right word.

My MIL was always like this all her life, deferred every decision to someone else but FIL is very controlling and I think she just lost confidence.
When my mum got like this it was definitely the start of dementia though we didn't realise at the time. She used to buy things online etc all the time but we started getting "can you sort this they have made websites so complicated now". The last time she tried to buy something online she ended up with 10 in her basket because she kept hitting "buy" on the item page and expecting it to take her to the payment page.
What I'm trying to say is it could be either learned helplessness like MIL or early dementia like mum.

If I had to guess I’d say it was a bit of both countrygirl99, and the habit of going “I can’t do this, do it for me” is masking some genuine cognitive issues. But I don’t know really. Lockdowns haven’t helped either.

Either way I think LadyGardenersQuestionTime is right that she’s unlikely to change.

If she has always been like this, and isn't actually forgetful but just outsourcing her worries to you while berating herself for being useless, I wonder if this is untreated anxiety.

Generalising here but most people who do have dementia don't realise they are forgetful and think the problem is with everyone else. If she is acutely aware of it, stressing herself about dementia and worrying about everything, and she is fairly young still (could still be early dementia), then anxiety is more likely.

Memory Clinic will be really helpful to know what exactly is going on. If it is dementia you can prepare yourself. If it is anxiety then she can have the treatment and support she needs and hopefully things will improve.

ARGH.

So she had an appointment with memory clinic, phoned up afterwards absolutely distraught saying they told her she definitely has dementia. But she couldn’t remember the details really of what was discussed and got very upset talking about it.

After a few days of stress and worry, spoke to her very gently again to see if she could pass along the details of the clinic to us, so we could (on good advice of someone on here!) contact them and ask them to write to her saying what it was they’d actually said.

MIL then explained that they hadn’t actually said dementia. What they said was that she had some issues which were worth speaking to the doctor about (think her appt was with nurse?) and they’d make her an appointment. She said “does that mean it’s dementia?”, they said the doctor would need to look at all that. So she heard this as: it is definitely dementia.

They also left her with some information about home care services and help with shopping? These aren’t really things she’s struggling with at the moment so not sure where that came from.

So we still have no idea what’s going on really. DH is planning to go to this doctor appointment with her whenever that is (she’s fine with this), and at least will write things down!

'DH is planning to go to this doctor appointment with her whenever that is (she’s fine with this), and at least will write things down!'

Excellent idea. My MIL comes out of medical appointments without a bloody clue about what was discussed or what's happening next, and I know how maddening it is!

FIL comes out of appointments with no clue and he hasn't got dementia. We have learnt the hard way that anything likely to be big he needs someone there. He has still managed to think he needs urgent surgery when he has just had a phone call to say he needs a blood test.

She will probably be advised to take someone with her to Memory Clinic anyway as history from an informant is a crucial part of the diagnosis - people who do have dementia obviously not being the most reliable of witnesses.

It sounds like bills and paperwork are her main problem for the moment, apart from the emotional neediness?

While you are waiting for the dementia assessment process to get anywhere, you should crack on with setting up lasting power of attorney for finances (which can be activated immediately) and separately for health and welfare (which will only kick in when she loses capacity). Once she really isn't able to deal with stuff herself it is too late to apply for power of attorney.

Then set up direct debits for as many of the bills as possible, get a smart meter installed, and with the LPA get access to her bank account and set up online banking so that you can deal with any other non-regular bills very easily.

If she doesn’t need carers as such, is there a local charity or group that offers assistance for vulnerable/elderly people?

Someone I know works for a local charity that pairs elderly people up with volunteers who just pop round for a chat and cup of tea, or a phone call to check in.

Or something like a local timebank where people volunteer to help out others and are matched up skills depending?

Her appointment at the doctors may well be with a nurse because it is most likely going to be a simple blood draw. They've assessed that there's something going on with her memory but there are possibilities other than dementia and they will want to rule those out first. It could be something as simple as a vitamin deficiency (B12 springs to mind). If the blood tests come back without anything of interest then it will be back to the memory clinic.

Please do sort out power of attorney if she hasn't already done so because by time you need it, it's too late to do it. You can do it yourself, you don't need a solicitor and although it's work, it's less work than the alternative should you need it. MIL wouldn't waste money on that sort of thing which now means an application to the court of protection which is considerably more expensive. I'd agree to moving all bills to direct debit, it means the incoming bits of paper aren't as urgent because they don't need paying.

Thank you all for advice. DH does have financial power of attorney although I’m not sure how much this is used practically at the moment - she still wants to deal with all banks etc herself but have DH there to check with. We have helped her move her bills to direct debit but she still wants to check every statement to be sure she’s not missed anything she needs to do.

She’s seen GP about memory issues and had blood tests previously. GP initially didn’t want to refer her to memory clinic as felt it was normal age-related stuff, but has referred her since (not sure if because symptoms got worse or because it was clearly distressing MIL whatever they were).

I say ‘memory issues’ but it isn’t just that really. She doesn’t tend to forget about things that have happened, or miss appointments etc, as long as she registers them at the time. She does sometimes have trouble finding words (although this has always been a bit of an issue) and gets very upset if she misplaces something (which she does do, but I wouldn’t say unusually so and certainly less than I do - but I appreciate it is distressing to her).

From my perspective it seems like the bigger issue is with her not ‘registering’ details/following a conversation, or being able to follow a process or make decisions around it. And this is again something that has always been there as long as I’ve known her (and she’s actually said to me “sometimes I start doing something and then I get stuck and it’s just easier to hand the whole thing over to someone clever and say ‘oh you do it’”), but has definitely got worse over the last couple of years.

Have a Google for companionship care in your area. It is a thing. Carers will come and just help with whatever ( though not work as a cleaner for example). Not sure how much responsibility they would take for financial stuff though but it it worth looking into.

Will do this, thank you.

Sounds much more like anxiety to me as PP said. I have young (30s, 50s) friends like this, both depend on their husbands a lot. The husbands accommodate it, as do I, but I do suspect I'd be dropped if I didn't. Retirement does trigger a lack of confidence for many, as did the lockdowns. Might she consider CBT?

This sounds very much like my mum - although she's 87. My step father who died 2 years ago was very controlling - bank account, shopping, filling in forms, even tablets were doled out by him at the right time. DM didn't even know how much pension she got because he opened her letters and then filed them away without her seeing them. I think it's a kind of learned helplessness. My mum was very passive and now she hasn't got him to sort things out for her she's lost. Unfortunately it's all fallen onto my shoulders to sort out. Sometimes though I do wonder - I totalled up the money in her various bank accounts and ISAs a couple of weeks ago and made a mistake in my adding up; she was on to it straight away wanting to know why it was £200 less than she thought it should be.

Agree with others-she sounds anxious. Doesn't mean she doesn't have some cognitive impairment, she may do or may not. But your description really sounds like the main issue currently is anxiety. Her husband had probably been managing this for her for years and so she's avoided dealing with it. Maybe worth her speaking to her GP-would she consider trying to treat her anxiety? With medications or some kind of therapy?