Supporting spouse - PIL, dementia, controlling SIL

[Slugslasher]

Quick background info: We have been NC with controlling sil (csil) for over 15 years for multiple reasons having lived away (the latter 4 years, at the other side of the world). 20 months ago when H retired we returned about 40 minutes drive from pil’s home. H also has a B and N(ice) sil (nsil) who along with csil live 5 minutes drive from pil.

csil has always been extremely (joined at the hip) close to pil and has over decades been a toxic influence on them and her brother and his wife until eventually bil and nsil saw the light and went no contact with her also. Despite csil’s best efforts both sons aided by their wives (me and nsil) managed to maintain a loving relationship with pil. Pil tried to steer their ship through all the ups and downs of their fractured family relationship - appeasing csil (as she screamed the loudest) allowing her full control of their lives.

Csil was widowed tragically in her early forties with two young children (she is now 58). We as a family were very supportive to her when this happened but sil decided ‘that part of her life was over’ and wore her widow’s weeds with aplomb. As the years passed sil and pil’s lives became more and more entwined with pil heavily involved with childcare so csil could carry on working. As pil became older csil then gradually turned the tables until neither could live without the other and she became the support to them. Eventually pil could not make any decisions for themselves, ran everything past her, domination of them was complete. Both of her now adult children still live with their mother. Both are ‘odd’ neither have managed to maintain adult relationships; their mother was highly controlling as they grew up; both were very unpleasant to us, we assumed this was due their mother’s toxicity - we did not add flames to any fires. NC was our way of managing csil and her little family.

csil in my opinion, has serious mental issues. She catastophises everything. She has cried wolf so many times that we now do not react until we see first-hand whatever crisis occurs (usually a storm in a teacup). Her anxiety levels are sky high and her anger and jealousy at my Dh - (her brother) even higher. Mostly I think the fact we moved away from the area and dared to have a happy life beyond the narrow confines of her life has angered her. She is now trying to use her ailing parents as a tool with which to control us and her other brother and wife.

Fast forward to the situation today : Both pil are now 90 (fil) and 87 (mil). Both with memory problems both 100% reliant on her, who is now self appointed carer. She is paid by pil to be their carer and because there are no assets (social housing - no savings) we volunteered to top up her earnings to make up her ‘wages’ so that she wasn’t out of pocket. Csil will not countenance outside help, until both brothers forced the issue and a cleaner was brought in to lighten the load. Nsil and I do not get involved in any decision making but support the brothers in a weekly rota to help. DH and I go every Tuesday. He does the grocery shopping, I prepare and serve the main meal (lunch), prepare afternoon tea for them to serve themselves and do some light housework. Bil and nsil do the same on Sundays. Csil manages everything else. Fil is blind, confused, has a severe tremor and diabetes. He has insulin injected every day (by csil because she is an ex nurse and fell out with the district nurses). Mil is on a zimmer, struggling to walk, completely confused and does not recognise she is in her own home now. Csil refuses point blank to consider care home for either of them and is in the process of autonomously taking them into her own home. Pil will do as they are told and are under complete control of csil.

Both brothers do not agree that she should do this but she is overruling them and steaming ahead with it.

Epic story. Thank you for reading if you have stayed with it.

I am using this as a way of keeping check on events as they unfold and will welcome constructive advice how to handle the fallout when csil crashes and burns. I am seriously worried about her (as much as I do not like her). Nobody could cope with what she is insisting on taking on.

I will add that DH has been emphatic that he has not worked for over 46 years to become a carer. I offered to take father into our home (fog) to lighten her load but DH will not budge.

Currently financial assessments are being made and occupational therapists are assessing csil’s home. We are aghast.

The 'over my dead body' comment was uttered by my SIL as part of a mad rant - leaves me cold. Especially as she followed it with the 'I'll see you in Court' cliche! They become more concerned with having the overall say, than considering what is best for people they are supposed to love. DH has little or no love for his mother, and what he does is purely from duty, but it must be desperately sad for your DH and his DB, who love their parents.

As I said previously mil qualifies for a fully funded care home. Fil because he is capable of climbing stairs and doing his own personal care doesn’t. They will not want to be separated. Csil is doing this for the right reasons despite the fact she knows it will be a huge commitment.

She is adamant she wants to care for her mother until the end because she genuinely is terrified that she will be neglected in a care home. (we all know the horror stories). Csil will still be looking after fil because he doesn’t qualify. Brothers want them both looked after in a care home. They want to fight for this. Heartbreaking to see mil crying “don’t leave me on my own” to fil. Fil will go where she goes under that sort of emotional pull. Heartbreaking to witness. Hard to argue against csil who wants to a) look after her mother and b) keep them together. It will break her.

H and II along with bil and nsil are going round and round in circles but can’t offer solutions to this family problem. Csil is willing to give her life to them. We don’t want her to do that for obvious reasons.

It is desperately sad we are distraught
@ajandjjmum

I'm not surprised you are distraught. Hugely stressful situation.

Would it be useful for you and the brothers to maybe look at what the funded care home options are locally? It would do no harm to find out if any are an easy commute to your F-i-l's property.

Not all funded care homes are awful. My DM has been in three in three years. Her first one was closed down after two years, her second was always a stop gap as we had to find her an instant space, and now her third one is absolutely excellent. Truly my mum, 87, now has more moments of lucidity than she did a year ago and she is a stone heavier than when she was at home (now 6.5 stones). Several separated by care needs couples spend the 'day' together and take meals together by arrangement.

If we got agreement with all siblings or a carehome for both of them we would. Csil will not agree. We need a meeting with sw next to see if we can keep them together in care. Fil will be asked what he wants to do. He will not agree to be separated from mil. Csil wins on that one. I think we are in with a small chance to overrule csil if we can keep them together. My guess is SW will love the fact she is willing to take them in. Job done, problem solved - don’t you think? We shall see.

This whole situation is devastating and I have no solution to offer for what is the best outcome for the PILs. But have dealt with a lot of PoA / Court of Protection / care home / probate matters over the past few years, my pragmatic self has some very big concerns for you.

Firstly the way your SIL is accessing her parents' money has disaster written all over it. I truly hope she's kept a paper trail of everything she's spent on their behalf and some form of contract showing them paying her a salary. Otherwise she could be in huge trouble legally.

And you mention clearing the house if they move in with her. What will happen to the house? Will it be sold? Assuming this unsustainable situation crashes down in the near future and they go into care homes, I fear the council will expect the sale value of the property to have been put aside to go towards costs. If SIL convinces her parents to give any of that money to her to cover living expenses she's setting herself up for serious trouble.

I really think you are doing the absolute best you possibly can in this situation but I'm very worried for you and your DH when it all falls down, due to decisions you played no part in. I wish you the very best.

@imaginaryCat Thank you for your good wishes. The house is rented from HA. Pil have neither savings nor assets. There has been a fa by social services. Yes we now realise their ‘arrangement’ is not legal or usual but her motives are (naively) sound. She does love them; they have been enmeshed in each other’s lives for ever. They are her life. She assumes full responsibility for them always has done. Her resentment at us stems from the fact we broke away from the family fold and forged a life beyond. She is jealous of that but that is her problem - not ours. We have come back from life beyond to a planned retirement and hit this head on.

Oh I don't doubt she genuinely believes in every decision she's making for them. But when the Court of Protection ask to see their bank statements and she's made numerous cash withdrawals or paid for things that could be for either them or her, they won't give a damn how honest her intentions were. No paper trail basically means financial abuse of a vulnerable person. My mum's been dead 2 years and I'm only now starting to throw away the boxes of receipts, because I'm finally certain no one's going to ask for proof of everything I spent on her behalf. And that was with the authority of the court after being appointed an official guardian.

She is perfectly capable of explaining herself. I’ll leave that to her if she falls foul of the authorities. Our concerns are pil’s welfare if/when she crashes and burns under the sheer weight of what she is insisting on taking on. We don’t agree with her decision and suspect we are powerless to stop her without upsetting pil.

My experience of SS in parents' area was that they absolutely prioritised needs and safety of parents. [ However, fully aware not all the same.] They kept my parents together in their own home (parents' wishes) for about three years after my DM's eventual dementia diagnosis. When my parents' situation eventually imploded without POA, they offered effective, instant practical guidance & I will always be grateful.

The SS is your DH & Bil best hope of the least worse solution. I don't think the brothers are powerless. I think their views will be treated with equal importance as none of the siblings actually holds POA.

Csil told us emphatically that ss will ask pil what they want to do. Mil wants to go to csil fil - will despite telling us otherwise follow her because she doesn’t want to be separated. (Although minutes later she has forgotten the conversation). Round and round we go.

I think brothers’ wishes will be superceded by mil who doesn’t want to go into a care home without fil who doesn’t meet the criteria. If he did, we might have a chance to save csil from herself and keep them together and cared for in a home. Even if we won that battle csil will have a meltdown. She desperately wants to do this because she is convinced that only her way is best. Her anxiety for them is genuine.

Sw apparently only works part time. We are trying to contact her. I’ll return if/when we manage a meeting. Thanks for listening.

Following a solo (care) visit by H yesterday (I am standing firm on a decision I made regarding only assisting on grocery shopping day), H and I are coming to terms with the fact that we cannot halt the direction this is going. He had a gentle conversation with them both who are now accepting csil’s offer of taking them into her house. Mil implores fil not to go into a carehome and fil has with resignation accepted he has no choice but to follow her into being cared for by their willing daughter, as they wish to remain together.

We can’t fight this.

H will with bil endeavour to contact social worker to register their concerns for their sister (and their parents) and once the plans are in motion, will assist with the move and disposal of their unwanted belongings. Nothing of value, no issues.

Bil is disgruntled because he knows through (FOG) he will be called upon when csil screams for help (inevitable); nsil is angry because she has to live with a depressed disgruntled H and expects it will be she who will get the call to do the handmaiden’s job. This is coming between them. I am a sympathetic sounding board for her - I am aware of this.

H respects my stance as I made my stand regarding his sister 15 years ago. I have always maintained I will say my “goodbyes” once they go under her roof. I cannot be in the vicinity of csil without rising to her. The situation is better off without her and I meeting.

We respect and sympathise with cil’s loyalty and love for her parents. We absolutely disagree with what she is prepared to do. It remains to be seen if H sticks to his guns regarding not being drafted in to share the caring. We know the going is tough now - it is going to be a lot tougher as they deteriorate.

Ongoing.

Slugslasher what a horrible scenario ... elder care is tough enough without throwing an unstable self-martyring carer into the mix

Did DH/BIL have a meeting with SW in the end ?

A more positive update:

Today we had the meeting with sw (two of them) and I must say “what a breath of fresh air!”

Tuesday is the day H and I do ‘day care’. SWs arranged their ‘interview’ with pil (without csil) in order to ascertain their feelings regarding moving in with their daughter (csil). I sat in the dining room but could hear the whole meeting and H sat quietly whilst SWs did their gentle interview. Pil came across very well and their feelings were absolute that this is their preferred next step. Mil can have a lucid conversation and her feelings are genuine and articulate but capacity of consequences of her wishes are low and memory of that conversation is gone within minutes of having it. SWs are in no doubt that they want this to happen although fil did say he has no alternative.

H then went with the SWs to bil’s house for a separate meeting to ascertain their concerns regarding the burden and stress upon which, their sister, this decision will have.

They get it.

They were very surprised to see that both brothers’ primary concern was not about the welfare of their parents who we all know are very well cared for. The brothers sang their sister’s praises but they made their case very well. I know I have explained the situation regarding csil upthread so I won’t repeat it all here but SWs now understand perfectly that we have a controlling carer who can’t or won’t accept outside help and will be infinitely worse off (without our help) once she takes them into her home.

SWs were very helpful. They assured us it that is is their job to make sure they address the causes of stresses that carers are under in order to make their life easier. They said they could offer 4-6 weeks a year respite for csil so that she could have downtime and that they would not be separated during respite. H and bil were resolute that csil will find it hard to relinquish control to outsiders (she shadows cleaner/helper now and doesn’t take advantage of down-time when she is there), that is our biggest problem. Along with her controlling ways regarding fil’s diet and their constant battles over sweets stuffs; dramatic catastrophising; ‘wolf crying’; and resentful martyrism with guilt tripping tantrums... you get the picture, bils spelled out loud the sibling concerns.

SW told us we can postpone disposing of the house for up to 6 weeks (in order not to burn that bridge) if they move in and all measure of help and support (respite for 6 weeks a year in a home of our choosing) -all news to us! They were very helpful. They are now fully aware of what we are up against trying to get csil to accept outside help to make her chosen life choices easier.

They are going away to asses and write a report and want to call another meeting with all siblings together.

That’ll be ‘interesting.

We hope we are getting somewhere. SW will not allow pil to move in until they are satisfied it is the right thing to do.

What an encouraging development, so pleased there's been such a swift response . The sw x 2 must have regarded the case as priority to fit you in so quickly, so that in itself is another positive.
At least now any more unilateral decisions made by csil can be challenged via the sw x 2 and everyone else's opinion gets an airing.
Suspect there will be fireworks from csil when she catches up with the meeting... but a day worth breaking dry January for... enjoy your evening!

Cheers, having a stiff gin as I speak. Tomorrow is another day.

Hello again,

Just a quick update: SW did not call a meeting with all siblings but had a separate meeting with Csil to "address concerns raised" by her siblings. Following this meeting it was concluded by us that there is no way we can stop Csil taking her parents into her home so both brothers have accepted this and are assisting with the move which happens on Friday. H is managing and funding the house contents removal/disposal/cleaning in order to take away extra financial pressure on his family. Mil's condition has deteriorated quite rapidly - she simply cannot continue in her home - that is plainly evident. Fil too although resigned, knows he has to follow her, his memory is failing, he is blind and is completely dependent on Csil for all his domestic needs.

Both brothers have specified that they will not be 'on call' for continuing care once she has them under her roof; she accepts their stance and is determined that she will be their main carer. They will be living with her from Friday and the house is being cleared/cleaned next week and the keys handed in to HA.

It remains to be seen how long Csil manages with this huge burden she insists she is willing to bear. I and nsil are maintaining our own stance. I have sadly accepted I will not visit them there because I wish to remain NC with Csil and Nsil is reserving judgement until the first 'upset' as we know things will not remain without drama for long. Pil have no idea the strain they are putting upon their daughter... they just know no other.

Oh OP, I'm sorry it's happened although I think it was obvious this was the most likely outcome. I think you're absolutely right to stand back. It's like the advice to let alcoholics hit rock bottom... if any of you help CSIL out it will just prolong the agony. She unfortunately needs to break before she'll accept this simply isn't the right outcome.
And believe me, I had sobbing phone calls from the care home to go and pick my mother up and let her go home, so I really do get it. But dementia means we're the grown ups and know what's best. Or at least some of us do!

Yesterday (Tuesday) was our ‘last’ rostered ‘help’ day. True to form Csil managed to create a drama out of nothing. She insisted on taking her mother to A&E in the morning after we arrived because she had a painful shoulder. We stayed with father, H did the shopping whilst I did laundry prepared their meals ( as usual). Father is very depressed at the impending move but blows with the wind. Last week he said to nsil “Csil is looking out for them because you all want to put us in a home”. (We all know whose words they are from). He is a man who has been used to having all his needs met by others but we have gently put him straight that ‘this is the end of an era’ and we are only as strong as our weakest point. Mother needs 24/7 care he has made his decision when asked - he has to accept it’s ‘not all about him’. He knows, but he is sulking. Csil texted from the hospital telling us not to leave fil. We told her he was fine, fed and watered and didn’t need us sitting with him until she got back - if we were needed, we would return. She expected us to ‘come to heel’ - we didn’t. She returned from hospital mid afternoon. Another storm in a teacup. H has gone there today on his own to organize house-contents for the move. I have declined my help as I don’t want to be around csil who is there too. They physically move out on Friday. H is organizing the removals/dispersal of unwanted ‘stuff’ (house full of unwanted hoarding - they threw nothing out) and cleaners hired next week to finish off. (We are funding this as they have no sparemoney). Once this is done, Cil is on her own unless there is a crisis.

Another day amplifying the madness this decision is to allow one person to take on two demented elderlies. Husband has been working all day emptying/sorting the contents of pil’s house ready for their move into Csil’s house whilst Csil handled the care of them both whilst running back and forth between both houses. Bill called round after work to find the two of them confused and agitated. Neither of them can remember making the decision to move nor what on earth is going on. Tomorrow is going to be a big day for them all.

Again, OP, you have my thoughts and sympathies. The first day my mum went into the care home was horrific. She became violent and assaulted the staff, other residents and me. Dementia turns people into something you wouldn't recognise. I hope tomorrow is at least survivable. CSIL is about to experience just what she's signed up for and I suspect there will be some desperate reaching out for her brothers as she realises this really is it.

Thanks @ImaginaryCat. The hardest part for me is watching both H and Bil wrestle with the grief for their parents as they deteriorate and the responsibility for their sister who has taken upon herself this huge burden against their will. It goes against both their personalities to stand back and watch her struggle but neither of them want to be dragged into her world. Someone said up thread she will have to be at rock bottom before she throws in the white towel. It is going to be hard for them to to do this.

Are sorry @ImaginaryCat, that was you