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 .

That sounds so tough

There is a box on here where you put in your postcode and find support in your area
www.alzheimers.org.uk/about-dementia/types-dementia/treatment-and-support-vascular-dementia

& here
www.ageuk.org.uk/services/in-your-area/dementia-support/

Do any of her children have POA?
It’s tough, DF has been diagnosed with dementia and, at the moment, isn’t too unpredictable. We know there is no way he would accept outside help and have no clue what do do when he gets to that stage. Dementia is terrible, both DGM suffered, it totally robs you of the person you love. Thankfully DF has agreed he needs some one to be able to act in his interest so has signed POA for health and finances whilst he still has capacity.
So sorry you are dealing with all this, do her children help at all? I hope it isn’t all falling into you.

Could you get a social worker & get her assessed, maybe she could go to a day centre a couple of days a week so you know you have days you know you are free?

Many people on this board have a similar starting point - their relative refuses any sort of additional help and believe the family can cover off any small requirement.
If you look at some of the threads where families are in huge distress, it’s normally because they couldn’t convince their relative at the stage you are now to accept help, and just muddled on to everyone’s detriment.
This is exactly the stage to deploy a companion to visit a couple of afternoons to supplement what you can do. The day centre is such a good idea. Does your husband or step son get attendance allowance? This can partially fund privately arranged visitors.
MiL (88) shouts regularly at her carers and denies them entry. Hindsight is a wonderful thing . The sooner you can get additional help coming in the better

@Wimowehwimowehwimowehwimoweh dh is an only child, and works away. He looks after her here with the children and does the food shopping at weekends while I’m working. Dh has poa over health but we are still waiting for finances. Must chase the solicitor. I handle her bills ect now she has no problem with us doing that thankfully.

@Nat6999 is social services the way to go ? She can do everything for herself physically still wich makes it harder I think. I can book a needs assessment through the LA but all the example questions are things she can do I worried they might think I was wasting their time or even worse dh worries they might deem she’s mentally incapable and put her in a home anyway

@Mum5net of course she doesn’t understand she has dementia. She has moment of what’s wrong with me but will forget 10 minutes down the line- so obviously doesn’t think she needs the help. but is terrified of using the washing machine never mind having people in. We claim nothing at the moment no,I will look into attendance allowance thank you. Step son did try to muddle on for a few months after fil passed but it was hard and he doesn’t visit much/ isn’t involved at all now. I’m sorry about your mil . She is 82 and it saddens me how many years we could have of this watching her deteriorate

I’m looking into day centres as we speak thank you!

They can put you in touch with support, my auntie got dementia age 58, she went to a day centre run by the Alzheimers society, it meant my uncle had 3 days a week he didn't have to worry while he was at work what she was doing.

On Attendance Allowance, call the GOV UK helpline 0800 731 0122 and ask for a form to be sent, as that way payments can be backdated from today's date. We had a lovely woman from Age Concern come along and help fill it out. (My DH emailed Age Concern in advance three weeks prior to the date he was visiting.) Having someone out with the home come in and help with the form was a Godsend as MIL couldn't be rude and say it was a waste of time. Mil gets £60 a week but got about £600 backdated- so the family gave a good chunk of that as a donation to Age Concern.)
There comes a point in your relationship with MIL where you perform a gear change. I think you have hit that stage. Up until now you probably have done what she wants and played by her rules and navigated everything with her central to all decision making. When the dementia gathers momentum her capacity fluctuates. There is a line that gets crossed when you say to yourself, Wait a minute. If I continue to help as much, we need to start following MY rules or its completely untenable. Having this out with her is pointless as her illness prevents her remembering so you just make the changes in your own behaviour and how you make arrangements. She obviously won't like some of your new arrangements but stand your ground.

or even worse dh worries they might deem she’s mentally incapable and put her in a home anyway.

They really aren't going to put her into a care home. SS will be very keen to keep her at home for as long as they can because putting people in care homes costs a lot of money.

For lots of people the trigger to going into holes is when they start wondering at night or for some, when they become violent. People can often be assessed and be lanced in a home once they've had a hospital stay and it's become clear that they can no longer look after themselves. It's much harder for people with dementia to "mask" their behaviour if they're in unfamiliar surroundings.

I agree with mum5net. You've played by her rules and it's beginning not to work.

Apply for attendance allowance, she already needs help with bills and shopping from your post. I'm sure if you have a good think you are all probably doing a lot more for her to enable her to stay at home.

As for the Carers, could you arrange a Carer and then introduce her as a friend? Take her around a couple of times to have a cuppa together and make out she's a friend. DMlL might accept a bit of help from a friend rather than a Carer.

Sorry about the typos.

@Mum5net I’ve printed off the form for attendance allowance thank you. She is quite agreeable really minus the carer side of things I just don’t want it to turn into a fight. But your right I must stand my ground. Ive told dh I can’t do it forever whilst managing my house her house work the children college work alone all week. something has to give

her care will be self funded. But she is already aggressive which is why I refuse to move in with her with 2 dc under 5.She hasn't left the house alone for years ,bar the neighbours garden the other day ,so fear of her wondering off is huge. . There are no day centres so to speak but we have the option of paying for respite care in a lovely home locally if we can get her to go. however a lady on her street has just been made redundant from a care home though,we are having a chat with her this week so I’m hoping if we follow your suggestion re “friend” it could work out well .🤞🏼

Does your LA have any support for carers? It is worth tapping into that

OP, telephone and have the form sent to your address. Printing off means it will only be backdated until the day you have the form completed and in their hands. Believe me the form takes time.

It will be an almighty struggle to impose 'care' on her. DH is in exactly the same situation. MIL is a prisoner in her own home by her own determination. However, you owe it to yourself to dig those heels in and insist. The GP can definitely prescribe something to take the edge off her aggression. I'd be back in touch with the GP and say with two dc under 5 who must attend with you, you need her GP to help diffuse the situation. MIL was given extra meds after being threatening to her carers and family.
It wont be easy. However, if you defer the forced imposition of help for her it will only get worse as her dementia takes further hold, so now is the moment. The redundant care worker is a great place to start.

@@MereDintofPandiculation I’ve just looked , there’s a couple of online support hubs i have put my name down for .

@Mum5net ah Will they backdate from the date of the call ?
To be 100% honest with you, it’s come to a head as I had to stop her from smacking the youngest recently.
We went to gp as she was being hysterically anxious , Gp referred her to memory clinic , noted that she’s lost weight and told her not to get herself worked up 🤷🏻‍♀️. Perhaps we need a trip back . Thank you for your help

Yes, back dated until the call date.

Hugely difficult for you. If you call the GP and say she was trying to violently mistreat your under 5 yrs DC and have that recorded, that will start to build up a record of chaos on her file. All these red flags of her not coping may help get additional supports in place or an allocated social worker.
Your next move should be to try and get a key safe installed and start to list of the tasks you think she needs help with. Many experienced posters on this board will support you and point you in the right direction.

I thought care homes were desperate for staff? Maybe double check that the person was definitely made redundant rather than asked to leave?

Sorry, I'm an old cynic!

Oh god OP, this is exactly where we are with MIL, and it's awful. I sympathise.

We found the Alzheimer's society helpline extremely helpful. It took several days before they called us back, but it was worth it.

Their advice is very good, and they can explain what you should be asking for and who you should be contacting.

We had spoken with MIL's GP who was quite helpful but they absolutely cannot tell us anything without MIL's consent.

We were very relieved to get a call from our local complex care and dementia team nurse out of the blue. We realised that the GP had obviously referred her to them without us knowing.

They seem very good and have rung MIL to offer help and an assessment which she of course has refused. They are used to this and are going to keep trying, and will keep us posted.

Don't worry too much about care homes just now. I would keep feeding information to the GP of any particular problems with behaviour and so on, and keep pushing for someone from adult care/social services to go in and carry out an assessment as your first step. Things do get a bit a better once they are in the 'system'.

@Mosaic123 it’s the local home in the village it’s closed down due to lack of residents after a Covid outbreak sadly

@TonTonMacoute I’m sorry to hear your in the same boat . I can book her a needs assessment but who knows If she will agree. At least she will be on the radar . will give the helpline a call thank you

If you keep doing everything because she refuses to have anyone else do it then you might as well give up any hope of peace before she dies. Nobody is going to take the burden off you - you have to reject the burden. And I do understand that that is hard hard hard to do. But who is more important - your MIL or your own children, whose lives are being deeply affected by this?

As for 'selling the home she worked so hard for so she can go into a home' - yes, that may well happen, and what better use for the money locked up in her home? What else is it for but to provide her with a safe roof over her head? Many care homes, especially private homes, offer fantastic care and quality of life (and death) to people with dementia, much better and safer and healthier than staggering on at home alone, scared and at risk.

Call social services, and call Dementia Connect, and get some changes along the way. And do it to protect your children's happiness and wellbeing.

If DH had a POA over Health can he arrange a Care Needs Assessment and be there when they visit to do the assessment. Unfortunately lots of people with dementia won't see that they needs help and will tell the SW that "it's ok, DDIL does that". DH and you will need to be firm and tell the SW that you can no longer give that level if care as she had become violent with your young DC.

At the Assessment you should be able to discuss things like getting her into daycare for the 3 days a week that you are visiting currently. You'll probably need to be firm and insist that you can no longer be there with your DC as she is a risk to them.

I'd also be reluctant to agree to her having a care line installed and you put down as the contact. If she needs help overnight regularly, this shouldn't be automatically provided by you. Remember any care that you agree to providing could continue 365 days a year for years to come.

If you want to pay for some care while you wait for the assessment, some care home do offer daycare and one local to us even offers transport.

As mum5net says, call the Attendance Allowance people and get them to send you the form. Once you've been granted the allowance it will be back dated to the date of the phone call.

I'd also fill in a Herbert Protocol. This is all of the information that the Police will need if she ever does go missing and it's all in one handy place with photos.

The This is me document is also useful to fill in and keep on your phone. It's a document about her life and what she likes and dislikes so that it can be given to carers and the Hospital if she's ever admitted. We sent a copy to the Hospital Ward when DMIL was admitted with delirium and then to the Care Home when she went there.

Is there a reason the solicitor is doing the POA? You can do them yourselves and you need to make sure your MIL signs it while she still has capacity. I thought the health one only kicked in when she doesn’t, so be careful and ensure you have the finance one in place before invoking the health one

As for 'selling the home she worked so hard for so she can go into a home' - yes, that may well happen, and what better use for the money locked up in her home? Trouble is, to that generation and to mine, the reason for saving is to be able to pass something on to the next generation. It will give great distress to know that the home and savings are gone.

as she had become violent with your young DC. She herself won't understand that - it's not so long ago (1960s) that smacking was regarded as good parenting. Corporal punishment even in primary schools, was still legal, and used. I myself remember being smacked by a teacher for talking in class - I was 6 at the time.

I thought the health one only kicked in when she doesn’t [have capacity], so be careful and ensure you have the finance one in place before invoking the health one Excellent point!

@Purplewithred your comment is a little harsh , i am doing the best I can for my children , husband and mil. I don’t need to be told how it is affecting my children, I’m well aware of that. Thanks for your advice though.

@ineedaholidaynow oh I’m not sure we just gave the forms to our family solicitor to process. Luckily she signed them all no problem.🙌🏻 But thanks for that I won’t use it until we are sure everything is completed!

@BunnyRuddington I am going to see if she will agree to a needs assessment. We luckily can afford respite care, her friend is a resident at a home around 15mins drive so I’m hoping she will be agreeable to go to “visit”. Im going to ring and see if they have any spaces. I’ve saved both of those forms to fill in tonight , thanks ever so much .

@MereDintofPandiculation as you said she has reverted to old ways, hand washing clothes, refusing new slippers because of cost . She went to smack the youngest as he was pulling ornaments of the tv stand. I simply told her we don’t do that to my children. Of course I was furious inside but shouting at her is pointless and she won’t even remember doing it the day after. On her good day she would be mortified at herself if I told her what she had done . She adores the children.

I am going to see if she will agree to a needs assessment.

It might be best to just arrange it and be there when they arrive. Just tell her something along the lines of it's that nice lady from the doctors who just wants a chat and sit her down with cake and tea.

Does the home her friend is in offer daycare or respite? TBH a couple of weeks in respite will do you the power of good abs don't feel guilty about having a break, you've been sacrificing so much for her, you're entitled to some time off

Sometimes it can help to rename carers as a home help/ personal assistant. She may accept help around the house, then the input and support can increase with her needs.

A friend did this for her dad, the carer doesn't wear a uniform and it's worked really well.

Is there a reason you are doing this and not your husband? Not to sound harsh, but she is not your mother, she is his. There is absolutely no way I would be doing this for someone at the expense of time with my children.

I would be putting my children and myself first and arranging care for her.

I can't believe your husband has let it get to this. Your children are so little and need their mother.