Supporting spouse - PIL, dementia, controlling SIL(210 Posts)
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.
I know exactly what you mean. The home where I put my mum was a bit messy and understaffed, but the staff they had were amazing, really took time learning about who she had been pre-dementia, so they could use those memories to engage her and open conversations. I saw plenty of other spotless places, run like a tight ship, where I never observed any really personal interaction.
But hey, like you say, at least CSIL likes it!
I know. It’s early days. I’ll pop back here from time to time to let you know how we are getting on. We know they are safe and cared for. The family, all of us now will work together to manage their future. That is the best we can do for them.
They’re settling in. Mother has had a perm and had powder and blusher on complete with smile. Father was newly showered with fresh clothes, beamed, stood up and did a twirl when we entered their room (still sitting in one room thinking they need permission to move). We took them from their room to a smaller day room. Both cannot comprehend ‘this’ is their home now. However, they are wondering at their fortune and appreciation of ‘think of this as your holidays’ as it sinks in that ‘everything is taken care of - no cooking, shopping, cleaning, bill paying’. Mother still tries to get up and make us a coffee (a habit she simply can’t erase). Little by little they are relaxing into their new life. We both came away comforted and slightly elated. We know our stand against Csil was the right way to go. They both look fresh and smiley today. Feeling great. Amazingly positive after years of worrying about this eventuality.
I’m sorry to update with a less positive vibe.
To cut a long story short we have fil sectioned in a hospital after numerous ‘incidents’ culminating in him lashing out at both carers and mil. His dementia has worsened since moving into the home. We think due to the fact he was exposed permanently to mil’s anxiety and distress (due to her dementia). He is desperate to get back to her and mil is pining for him. (Heartbreaking). We as a family are now sharing out the visiting (daily), spread between both facilities an hour apart. H and I spending 4 hours a day with dad in order to placate and settle (we are trying to get him to understand that if he is agitated he will never be allowed back with her. He is currently being assessed in there but it is intimated that he needs an ‘EMI’ unit. This all kicked off just as Csil was going off for a long needed holiday. We all made her go. Mil is distressed and causing disturbances in the carehome upsetting the other residents. Nsil is visiting her daily (while Csil is on holiday). A nightmare. Obviously we are on a long journey on a spiral downwards. Our lives are not our own whilst we go through this period of assessment and upheaval. Csil is going to fight to get them both into an ‘EMI’ unit. Perhaps on different floors so father has respite from her but can see her sometime through the day. Meanwhile Nsil has been informed by the carehome that mil needs to wear incontinence pads (frequent accidents with bowel movements) but Csil had left strict instructions she did not want this to happen. Nsil has told them to do what they need to do - Csil will not be happy about that when she returns. Fil thinks he is in an army barracks/prison/or troop ship. He is bored out of his mind surrounded by other demented souls far worse than he. He is distraught when he was told he has been violent - he has no recollection.
All sounds pretty awful. Really sorry to hear your update.
The incontinence pads can still be precautionary rather an absolute necessity and probably the least of all the difficult stuff going on.
Pretty sure social work and health professionals will try to keep them in same location if at all possible. Medication will surely be amended but takes precious weeks to have an effect. Feel your pain and sadness for P-i-L.
We are currently in the process of locating a local care home with ‘dual’ facilities which can accommodate ‘EMI’ (elderly mentally infirm’) along with dementia care which has two vacancies. We think as mother deteriorates, she too will need this. We are trying to get them together. All siblings on the same page (thankfully). Csil has been on the warpath with SW (who ordered the section without telling the family) but H is currently working with her whilst Csil is on holiday. The hospital where Dad currently is say he needs to be moved quickly as he is traumatised where he is. He is well aware he has to keep his head down and remain calm so that we can get him out. He knows he has, in his own words “been an idiot” but we are worried that he will not keep it together whilst we are frantically trying to find a suitable place to accommodate both their needs together. My heart is breaking for him. He is vulnerable right now and it is testament to his strength that he is managing to keep calm in the place he is in.
Mother in the meantime is walking the corridors crying, looking for him.
It's doubly difficult when parents-in-law are both in crisis in different places at the same time but there are lots on here who understand.
If F-i-L is in such a bad state I guess I would have expected him to be kept in a mental health unit until he has stabilised before being sent to a care home. A hospital would have better staff ratios to care for him if he is deemed dangerous to staff but the bottom line might be there are no beds? Surely though he is being medicated now?
Walking the corridors, crying is awful to witness but is pretty much standard fare until M-i-L also gets some medication. Not all medication is bad. My mum was in a very agitated state and sectioned for both her and our safety. Four years down the road while she is more frail she is calm (mostly) and very sweet albeit totally away with the fairies
Dad is calm. The staff were not trained to defuse difficult situations. He has been absolutely no bother in the hospital. Things escalated but could have been defused. He is desperate to be with her. On no medication. But they have taken him off a myriad of drugs he was all ready on. Dad was triggered by mother’s distress.
They have said he can be discharged now but we need EMI home for two so they can be together again. Trawling them now.
Sorry if I misread. Pleased he is calm. Waiting for care home spaces to emerge is awkward and a bit wretched. We waited 5 long months for one place and by then a new place had opened and we switched. Just saying as we never expected it to be as long.
Is one of the inlaws well enough to be taken to see the other? That may present problems when separated again but we took my dad in a wheel chair taxi from one hospital to the other. Hard for you all.
OP What a huge journey and still no end. I and everyone on MN wish you well.
Great news. We have found a lovely new care home which meets with our requirements. Dad will move in within days and mother in two weeks (following 2 weeks notice).
It has been an arduous fortnight with us being consumed full time running between the two of them and researching and visiting homes in an extended area. A steep learning curve or us but hopefully a happy outcome. Siblings are still on the same page and working together now for them. Csil came back from holiday with most of the work done (by us). She tried to play ‘silly buggers’ with us but soon learned that we would not tolerate any time-wasting in pil’s best interests (they were suffering if we delay progress). She backed down and accepted everything we had done in her absence. Result.
I've only just come across this post. Wonderful news for you and your family. What a nightmare it has been. Sending good wishes to you all xx
You may not believe this to be abuse but as someone who works in adult social care this situation needs to be brought to your local authorities attention urgently. Your csil sounds controlling and is using the bank card without much accountability (poss financial abuse depending how she using it) is refusing to consider other care options that may be better and is getting into screaming matches with FIL (controlling). Its one thing to express your displeasure but you're actually feeding into the situation with a watch and wait approach and are continuing to inadvertently give csil this power. You/DH or his brother must raise this with your adult social care department. This will also put you in a good position to explain your observations of csil before she tries to manipulate PIL or ss.
My phone has just updated and I've seen the great news. Well done on sticking with this to a positive resolution. Make yourselves known to home so that csil doesn't become their main contact as she may struggle to relinquish her hold on PIL. Be prepared for lots of complaints from her and nothing being good enough.
Gosh, what a crazy fortnight but time well spent now that you've found somewhere that will work. Really pleased for you all. Sounds like your CSil is mellowing and that must be a win-win for everyone. Now time to get back to celebrating your newish grand child...
Dad has now settled into new home which is a huge (positive) contrast to the one he left. He will have had two full weeks without mil who transfers in on Friday morning. The staff in the home are fantastic; fully clued up on their needs and dad’s triggers (mil). Mil will be sleeping in a different part of the building but they will be brought together for a few hours through the day. Dad has already had two outings with some other residents in there - he is lapping it up.
Csil fell out with the SWs (predicted) and now H is dealing with them.
Her sense of entitlement holds no bounds: SW negotiated waiver of top-up fees due to the fact we had ‘buy one get one free’ (amazing!) but this was not enough for Csil who ‘expected’ them to cover the notice period for previous home and new home. She had a huge rant with SW and basically refuses to deal with them. H is a voice of reason and is now handling all necessary admin as we go forward.
I invested a huge amount of my time with fil whilst he was in hospital (following section) I know this paid dividends - he came out fitter and well. We know we did right by him.
Mil is clueless; has no capacity. Dad is delusional and has no capacity. We hope they settle into their new home and live out their lives in peace. Csil will be told by us (once we have them settled) that we are under no ‘timetable’ or obligation (to her) regarding visiting. We will make our own decisions and try to get on with our lives with as little contact with her as possible. We need a holiday!
I guess now that both Fil and Mil have been living in five different houses/ homes in the last nine months any frailty and dementia is fully exposed. It must be so hard for everyone, especially them.
Interesting to see that Care Home 1 seemed to serve them better than the higher rated and well inspected Care Home 2. Like you we have had three care homes and we also fond that the highest rated and best rated on paper wasn't actually best for our DM. Book that holiday.
Mil has a tremendous bruise on her leg. The transition to new home will also include a diversion to hospital to check she hasn’t a dvt. It never rains but it pours. Csil is convinced her leg is breaking down and she is dying.
Last week fil had a Wicklow on his thumb - Csil was convinced he would get gangrene and lose his thumb. One day her catastrophising will ring true...
I am not involved with the move today due to my NC with Csil. H is there assisting. Fingers’ crossed all goes well.
A copy and paste of a diary entry of yesterday’s events:
“We finally got mam and dad reunited into their new care home following dad’s release from hospital after his section. I do think his two week ‘settling in’ period alone was advantageous. He has missed her but he needed that time to become accustomed to his new environment. He has been on day trips out, singsong activities and palled up with a few other old chaps in there. He has never had any time independent of her for years. It has done him good. They are staying in separate parts of the building to give him respite. ‘She’ and her fretfulness and anxiety was his trigger.
Mam however, was not happy following the move. Angry and stroppy, refusing to eat food and hurling emotional insults at her family “why on earth are you leaving me here etc etc”. Her reaction on seeing dad “pleased to see you again” as if he was someone incidental she had met in the past. Dad surprisingly gently explained to her that his “wonderful family have worked tirelessly and run to hell and back.”
After a diatribe of negativity she said to him “Are you happy here then?”. He replied full of positivity “Yes it’s a lovely place I’m really happy.” Mam has always put him first, deferring to him said “oh alright then!”
I wonder how her first night went. She has absolutely no recall. She will have been up all night I expect.”
By the way... the leg is badly bruised (no idea how it happened) no dvt.
Copy and paste of diary:
“Visited mam and dad in their new care home this morning. They are being kept separately from each other because mam frets and causes him to be anxious which are triggers for him. Dad misses her but has no recollection she is living in the same home now until we brought them together in the garden. Mam’s trigger is mealtimes; she started crying asking to ‘go home’ to a home she last lived in nearly 40 years ago. We shall have to monitor their behaviour so that neither gets distressed by the other. The staff are on to it”.
Two days later:
“Following another visit to the care home today: We were pleasantly surprised and relieved to see progress with Mam’s demeanour - a HUGE improvement. The staff are so switched on with them both. We found them sitting together in the day room, still holding hands. Dad is on cloud nine and she is in her words “not happy but content”. She says she ”doesn’t know what she has done to be stuck in here”, obviously unaware she can’t take care of herself. I gently talk to her and say “this is not a punishment but look upon it as a lovely holiday”. Her eyes tell me she can’t comprehend why her life has come to this but Dad backs me up and reassures her (and us) that they are both in the best place. Dad is away with the mixer with his stories and she is becoming more vacant. They both are aware of each other - Dad especially proclaiming his love for her/me/everybody (not sure if he is on medication to combat his agitation - but it’s working). All good”.
What a difference in two days.
Thank you all for your insights and empathy. We are getting there!
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