I can’t cope with mil anymore

[Picklesbaby]

My mil has been diagnosed with vascular dementia. It’s been a hard up to now yet perfectly manageable. Her husband died of Covid back in November and Step son has now moved out. We have been coping with me going up 3 days a week and her coming to us at a weekend but I’m honestly so drained. Yesterday was the first day I went out with the kids in ages and Dhs son rang saying the neighbour had rang him as she was in their front garden crying. By the time I got there an hour later she was fine and couldn’t remember a thing.
She rings over 100 times a day but we can’t live with her as she has become very unpredictable with the children. She can wash dress and does her own gardening still. Last week she was up a ladder ripping all the wall paper off because someone (herself) had left her a note telling her to. I love her to bits and normally love spending my days off work with her but I’m constantly worried about what she is doing .She will not accept any professional care and says I am trying to make out she’s mad when I suggest it. Can I arrange some anyway ? What will they do if she can still physically look after herself? Am I just going to have to surrender and sell the home they worked all their lives for to pay for a care home. How would I even go about that ? I feel helpless .

@BaronessOfTheNorth the OP says her husband works away. I'm assuming since the husband's death and the stepson moving out, things have got worse and it is now the time to start putting things in place. Most families muddle through for some time before getting to the point where they can't do it anymore

@Picklesbaby Yes, it's difficult. She doesn't deserve anger, because she's just reverting to ingrained behaviour that was the norm at the time she learned it, and she no longer has the capacity to act on the later learning that our ideas of what is acceptable have changed. But you can't help but feel anger at someone going against what we think is acceptable now. I think you handled it very well. And it would be difficult to expect her to childproof her home. So you're left with how to ensure she's safe when her house is a dangerous environment for your children, much as it would be if a particularly bad tempered and unpredictable wildcat was living there.

@BaronessOfTheNorth He works away mon-fri most weeks , he does all her care and the majority of the children’s care on weekends/ evenings when he is here . We have different views and that’s fine.She is not my mother, she’s the closest thing I’ve had to one. Pp is right .losing her husband in November and suddenly living alone for the first time in 55years has understandably sent her downhill. I want to arrange care but like many people I have no idea where to start with stuff like this , hence the post .

Oh and my children get their mother every evening and lots during the night. Minus Fridays when I work untill 10pm and DH does bedtime . (Which i live for 😁😁 )

@ineedaholidaynow
I agree with @BaronessOfTheNorth. I think the OP is amazing to do that much for her MIL. What is your husband doing about his working arrangements ? Expecting you to do all this with his mother and 2 children under 5, is above and beyond quite frankly. Your husband should be the one taking time off work and organising assessments / carers etc.

X-posted.
You are doing the vast majority of your MIL's care if he's away Mon-Fri. I think you're amazing, your DH is very lucky to have you.

@MereDintofPandiculation unpredictable wild cat is a fantastically accurate description. We are turning the spare room into a play room (at her request!) so i’m hoping it will take the pressure off . We spend most of the time in the garden now when we go .which thankfully they love as we don’t have one .
The redundant carer is going to pop round for a brew with mil to test the water🤞🏼 . Ive ordered the attendance allowance form and requested a call back from the home regarding respite care. Feeling lighter already

You can't just send her to respite !

If she has capacity around where she wants to live you're illegally depriving her of her liberty.

You may have POA for health but that only works if they don't have capacity. If she agrees to go, fine, but if she says no and won't go you can't make her.

@l2b2 Aw thank you so much. He is self employed so has to go where the work is , which is always miles away sadly. He is the main earner as I’m only part time at the moment so it makes sense for me to do the majority. He is very lucky in that way ,but he knows it and reminds me most days thankfully !

I agree with the PPs that you are going above and beyond for your MiL and DH. It is refreshing to see such a positive inlaw story relayed here but I do think you need to think about your own wellbeing and as such the impact on your DC. As you have identified this situation is only going to deteriorate so this needs to be addressed now. You are doing all the heavy lifting and your DH just doing weekends isn’t really sufficient.

As an interim could he not ask his employer for one day at least back at home? Maybe a short term sabbatical? Could he perhaps do the admin surrounding assessments remotely, make the phone calls etc.

Ah we cross posted. But the other points still stand, he could do some phone calls/admin to relieve some of the burden. Would finances allow him to drop to 4 days in the short term?

I’ve never said I will force her to respite. I’m quite aware that mil isn’t going to do anything she doesn’t want to

Is she still driving? Access to a car? Thats what terrified me when it seemed like my relative was heading towards dementia because he was still driving. Thankfully he realised for himself that he should stop driving just in time.

I hope you figure out what to do op, it sounds really hard.

No car luckily never driven , or paid a bill. Fil did everything like that. Very old fashioned

@KatherineSiena it is only him and his partner and they get paid per job so it wouldn’t really make sense to drop a day. He will be home more after Christmas though when he finishes this contract he is on thankfully. He’s told me to leave the forms for him this weekend so that’s one less job

He’s told me to leave the forms for him this weekend so that’s one less job.

That's great Pickles. He needs to start complying a list of all of the things that she needs help with, like doing the shopping.

Is she doing the cleaning and food prep? Sorry if you've mentioned this before.

@BunnyRuddington Yes she does all the cleaning , in the evening she doesn’t do so much cooking but she can do ready meals or heat up what I send in the oven . Makes herself sandwich’s ect for lunch. So it’s just shopping, washing and finance , taking her to medical appointments and the hairdressers atm.

Hi I have been in your situation for the last eight years . My mum has vascular dementia and I’m the only child and at the start of it all I had a newborn and a very young primary aged child. Last week my mums dementia has progressed to mum losing her mobility and took a “ step down” and has finally entered a care home for nursing needs . No other relatives or in-laws to help me nearby and my husband did what he could . The 100 phone calls a day stage sounds very familiar . Our phone would ring at all timesof the day . In an ever decreasing world where my mother lived on shifting sands - I was the rock she clung to. We are self funding . It usually took a hospital admission or disaster to leverage in another level of care . Vascular dementia and pneumonia were common bedfellows and for many years I was in and out of a&e emergency admissions. Mum would never go to groups and in her head she was fine ( the paradox of dementia ) I found a lady gardener who progressed to light cleaning the first couple of years . Then we went to a national expensive franchise who were excellent and provided calls of an hour with a team of ladies who all got to know mum . The care slowly ramped up each time we had a disaster . Sometimes you had to let the dominoes fall . . During the pandemic I spent tens of thousand of the saving to plug the gaps overnight when mum became Increasingly psychotic . Mum eventually stayed in her home this last year with 1:1 care with a best interests meeting donein hospital . It’s a long story and to be honest I’ve blocked out some of the details now . We went to the brink many many times . I have joked that hell has a lovely basement but beyond that I keep discovering the wine cellar and then the next level below .

Ss were never interested in supporting me and we were low priority’s self funders as mum could feed & dress herself & didn’t wander off anywhere or harass anyone ( just me at 3am !!) and I was “ the daughter round the corner” We were referred to the mental health services for older people and they useless too or just we were unlucky with the nurse assigned to us . I had to beg and cry to a clinician to come out in an emergency during the covid pandemic and dispense psychotics . All sorts of awful things happened as we skirted disaster whilst my mum steadfastly refused care and at the height of her rage & turned on me regularly . My mother’s story and our journey has not been easy particularly the last 3 years . The things I found useful was to document your mils medical & social history , incidents , admission to hospital , phone calls to whoever , dates ( keep a digital copy and update ) . Exhausting I know I would kick myself if I realised I’d missed something Write and pester . Understand that ss and the nhs are totally overloaded and the law is quite nuanced re capacity . You will also find that people and I include myself at the beginning don’t get how dementia progress and the time line . Dementia is not granny quietly reminiscing in a chair a la coco nor is it all people wandering off and missing posters . Everybody with dementia is different and everybody’s experience of dementia is different

You will need to have a tough shell and make as much time for yourself and children as possible . My children have had many many holidays to the detriment of our finances and doing up our house . It is a running joke that I was going on holiday whenever I could ! (Notwithstanding I could never fully relax as I had to call my mum )

Im now trying to get my head round mum finally declining into not recognising me the last week . We had a difficult relationship pre dementia . Somebody described dementia as a train journey with a destination you don’t know where you are going to get off . It was hard for me as everyone else I knew had grandparents helping with childcare ( or complaining about it! Grr) whilst I ended up in a caring role I hadn’t asked for with small children in tow or anticipated how bad it would get . I have to process all sort of emotions . To be frank I’m not sure if I have . You can take yourself to the GP and explain how what is happening and how it is impacting you . That helps for leverage to get to see the right people

I found dipping in & out of this board extremely useful and I reccomend it to many ( usually people in their late 50’s - so I get how you must feel ) I also found the American clinician Teepa Snow on you tube really really useful in helping me understand dementia and some other caring tips even in the early days . She is very wry and funny . I have a good sense of black humour.- it is a coping strategy . . There was a bbc one off drama in the last couple of years ago with a famous older actress ( think Helen Mirren but not her that struck a chord with me re dementia . Someone here can probably tell you . I’m gearing up to watch the father with Anthony Hopkins ( the trailers alone tell me everything I need to know- I’ve already cried watching it ) there was also a really good article on the paradox of dementia in the guardian if you google it . By the way my children are happy and well cared for despite witnessing some horrible things as well as my distress . They understand grandma has dementia and have been matter of fact about it . I’ve probably ended up doing more than most people in ensuring they are shielded by it .
I wish you good luck and a hopefully some help soon . There are lots of people with really good info and support here . The cockroach cafe thread is excellent I lurk often there x

www.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia?CMP=Share_iOSApp_Other

m.youtube.com/watch?v=t--mkzfHuIE