Supporting spouse - PIL, dementia, controlling SIL

Well today New Year’s Day H and I had an emotionally draining discussion with pil.

Mil admitted she can’t cope any more in their home whilst ‘in denial’ fil tried to placate her. I got H to one side and urged him to have ‘the conversation’ in order to find out what they really want to happen as opposed to what csil has said ‘is’ going to happen.

Mil wants to live with csil but doesn’t want to be separated from Fil (married and devoted to each other 65 years). Fil realises that mil needs 24/7 care and admitted that as ungrateful as it sounds wishes it was not their daughter who was going to give it. He actually said (with no prompting from us) that csil “needs professional help” as she is mentally ill. We gently explained that mil qualifies to go into a care home but he doesn’t. Mil cried and said she doesn’t want to be separated from Fil and he obviously reciprocates. Mil went round and round in circles forgetting the conversation minutes after having it. She hasn’t capaciity to realise the impact and strain her (their) wishes will have on their daughter. Fil gets it. He really gets it. He knows the situation perfectly - he has just been keeping his head down and hoping the status quo remains as it is. We left the situation ‘open’ until a sibling meeting arranged for later this week. We don’t have solutions to offer. I don‘t think fil is strong enough to a) stand up to csil and refuse to comply with moving in with her and b) separate from mil and accept her going into care.

Very distressing to witness.

Bil is adamant because of csil’s behaviour over Christmas (he has a very disturbing answerphone recording of pil crying saying “she’s gone mental” as evidence that csil should not take them in. He fears escalation. Csil is in their words ‘a heart attack waiting to happen’. My observation is she is on the verge of a breakdown.

Ongoing...

New Years Day. We are ‘rostered’ to do day care. Our family visitors have now gone home. We will assess the situation then.

Whilst money is an issue with csil, I do not believe that is her motivation for the decision she has made. The reason she gave up her paid employment was because she couldn’t cope with their increased demands and carry on working. She made herself too available for them until they depended on her for every mortal thing. The decision for them to pay her to be their carer was made jointly between themselves. We were just informed about it as decision made. Csil was originally just dropping round making sure all was well. Now their care is full time and more. She has made a huge rod for her own back. Old family history (her behaviour towards her siblings) deemed her isolated from us all. We have been dragged into this against our own will, have assisted until now we realise our lives are being impacted by her decisions. We are trying to make a stand. Csil is used to her family deferring to her wishes (I opted out 15 years ago). Nsil has been supporting her husband because he is stressed with work and has been suffering with depression (the sheer enormity of parents needs has got to him). They are well loved but we can’t (won’t) put our lives on hold in order to comply with csil’s ‘care-plan’ - both brothers have agreed this and both I and nsil have drawn our line in the sand and refuse to be handmaidens to csil.

You are absolutely spot on @ReflectMonatomism. The added burden is she relies on the income from them to keep the wolves from her door. She draws her own occupational pension next year. We top up her earnings - a commitment we made whilst we were overseas (as our contribution because we weren’t there physically). We agreed that this will carry on no matter what happens (if either of them died eg) until she drew her own income. It is now a substantial part of our own monthly income but we will honour it because we acknowledge her sacrifice is worth far more. If and when they go into care (or with her), the finances affect her negatively. She is (for now) adamant she is going to be her mother’s carer until the end. Father has in the past said “she can go there but I’m going nowhere”. He can be reasoned with. When I quietly talk to him he has said he would go into a home but he isn’t strong enough to stand up to csil who has been their ‘dominator’ for decades and he forgets because his memory is deteriorating rapidly.

You’ve got it in one @ReflectentMonatomism. Csil although is living the ‘reality’ does not and will not accept that her siblings do not want to to go further down the road that she has chosen for herself. The going is tough for us all now but once pil need personal care (both are continent, mil barely able to make it to the toilet due mobility issues) it will get physically harder. Csil wants us all along with herself to be held prisoner to their needs. Mil now cannot be left alone because her memory is non-existent, she panics if there is nobody in her vicinity. Fil had his chocolate confiscated by csil; he (although he is blind) went out to the local shop to buy more leaving mil alone. Mil in panic managed to phone both csil and nsil (they all live 5 mins drive from their house) csil then raised merry hell with fil (once he was found). All hell broke loose. Bil told us that csil’s behaviour would be classed as ‘abuse’ if witnessed by anyone else. I see a woman at the end of her tether but she can’t let go.

That’s the perception that I would expect from an outsider who doesn’t know the family history @poppoppop 100. I haven’t been ‘no contact’ for 15 years without reason. The fact her parents are now ailing and she cannot cope is the only reason I personally have got involved. I acknowledge whole heartedly the sacrifice she is making in order to keep them together. There has been absolute ructions between her and her father over the Christmas break. Both brothers are calling a meeting (again) next week to try to avert the inevitable meltdown that is going to happen. Csil looks on the verge of a breakdown, she will break if she takes this on. I think she needs someone to step in and take the decision from her because she clearly can’t relinquish control. She has chosen this life for herself, they are complicit in that decision. We have not had any input in any of their choices and have no wish to be emotionally blackmailed into compliance now.

Quick update: True to form on Christmas week csil has declared she is giving notice to HA that the house is being given up. Csil assumes we jump and how high regarding removal of furniture and clearing house. We are going today to pil (a care day for us in lieu of Christmas Day) and will assess their opinion (for what it’s worth because they bend with the wind these days). We have no other acceptable option to offer. Pil would be separated if mil goes into a home and fil left to carers. Csil wants to take them in - she sees it as in their best interests. She has effectively given up her life for them. I want to remain NC with her for my own reasons, nsil is equally unhappy in her relationship (csil physically attacked her several years ago) so neither of us will help with respite once they move into her home; bil is overwhelmed with work (self employed tradesman) and H is still emphatic that he doesn’t want to spend his own retirement as carer. Csil is heading for a breakdown with what she is taking on. I am worried for all of them.

This is what we will have to do. H has committed to paying his sister the top-up of wages as agreed when she gave up her job to look after them until she draws her own occupational pension next year. We will review that part of the equation then.

Everything is as it is now until after the Christmas holidays. Unless anything occurs before then and fil agrees (he hasn’t been consulted yet as he can’t remember from one day to the next) I think once all arrangements are made csil will get her way.

I am waiting for the storm of emotional blackmail to happen but currently we are resolute that this is her and their decision - not ours. Bil and nsil are of the same opinion as us.

Following my last post it has been confirmed by SS that mil will qualify for fully funded care in a care home and fil (because he can still do his own personal care) qualifies for carers to come into his home to do meds and meals.

Csil is not agreeing to any of this and after a meeting with ss, they have agreed to give her a further small weekly sum of money to enable her to bring in her own (trusted) help. She is planning to take them into her home after the Christmas holidays and become their full-time carer. We cannot fight her/their parents/social services who all seem to agree that this is the next step forward. A meeting will be held again with siblings after Christmas to discuss how and when the move will happen. Both I and my nsil are stepping back and not getting involved whilst siblings decide with the next step forward. H has specified he does not agree that csil should take them into her home because she will inevitably not cope as they deteriorate. Bil is at the end of his tether with the situation as his work commitments are all consuming, he cannot cope with his parents too. Pil especially mil are slipping away from reality they have no idea the strain they are putting on their family. Csil is adamant that only she can look after them and has made the decision.

Both nsil and I have had a chinwag. We are on the same page. DH has reaffirmed with me today that he is not going to financially support his parents to live with her because he knows this will break his sister both mentally and physically. He is adamant he is not going to be coerced into her ‘care plan’ plans. Nsil has also told her DH not to ‘volunteer’ her services either. Bil runs his own business and works 6 days a week - his only day off is a Sunday and he goes round to his parents to do his bit then. We have a busy time over Christmas holidays managing our own family (new grandchild) two sons and wives visiting all over the holiday period. Csil has been (demanding) requesting holiday cover for herself. I have withheld my services apart from the day we do their grocery shopping. DH is going to go on his own other days to give csil some respite. Sparks will fly I fear at family meeting. I am not attending due to my decision to remain NC with csil. It remains to be seen what what happens next. Csil is hitting a stone wall with us now. Mil needs 24/7 care soon. Fil has no capacity to look after himself because domestically he is of the generation of men who did nothing at home. He doesn’t even know how to switch the cooker on. Dreadful situation because despite our stance - we do love them dearly. We both think they would be better off cared for in a home. Up to now Csil has been resolute she won’t consider it because she fears they will be neglected. She cannot let go of control to others.

Just had word (via bil) that financial assessment has been done. OT have said they can’t install grab rails in her downstairs bathroom because the cladding on the walls won’t support them). Csil is asking for a meeting with her sibs as it appears she has been informed following the fa that their income falls considerably if she takes them in. It appears her plans will not be financially viable. Not sure whether she is going to throw in the towel and/or consider other options. The fact she is requesting a meeting is significant.

@Needmoresleep thank you for your response. They are in a three bedroom HA/Local Authority House. A wet room (fully funded) was installed in the downstairs cloakroom last year. A bed was installed in the dining room but mil insists on sleeping on the sofa in the sitting room (glass doors into the dining room). Fil has just recently started using the bed downstairs in order to be on hand if confused mil wakes up. Csil is finding that she is needed more and more and for this reason wants to take them both into her house because running between the two is becoming too much. Csil owns her own house. She gave up her paid employment the year before last and pil agreed to use their pension/benefits to pay csil to look after them. We topped up her ‘wages’ so that she was not out of pocket. She feels entitled to this and has never acknowledged our contribution nor our physical help on Tuesdays which she requested so she could have a day off. Csil did not think her mother had long to live when she made the decision to be her carer. (catastrophising), fil’s heart is strong, we could have years of this to face. Mil I think could last too. Neither of them are aware of the huge burden they are. They have always had csil in their lives. This is their normal. Bil, nsil and we think they should now be in a care home but csil is having none of it and has been expecting us all to fall in line. The manipulation and emotional blackmail has not worked. She has turned to SS for help. We are waiting for the assessments, both financial and OT.

We are not committing ourselves to being in her employ and will not enable her to make this decision. She is on her own if she does this and after a meeting last week between the three siblings she knows it.

Ongoing...

Thanks. I’ll come back if and when the situation changes. Pretty sure the is no - csil just assumes full responsibility, has done for years, they just trust her and do as they are told. We are the ones objecting to the ‘by mission creep’ assumption that we have to step up into her ‘care plan’ plans. I am going to suggest to H that and his brother have a right to be involved with decision making despite csil’s assumption that it her way - period.

There is no money in this case. Csil just wants her version of what she sees as best for them. She will crash and burn because she thinks only she (with us in her employ) is the way. We are not complying with her wishes. She is very angry at us.