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.

DM was medicated and now she has 'happy' dementia where she is relaxed and says 'I love you' to everyone
I suppose this will be the answer 'soma' for the elderly, a range of drugs will be developed to soothe and pacify the demented

This is tangential Hearhere but in one of DM's places no-one in her unit (14 persons) vacated the care home in a whole year... they were so well looked after they all thrived. However, from what I've witnessed, very few actually find the right recipe and certainly not first time around. My DM is on the lowest dose of trazodone and nothing else. Genuinely, she is happy and is awake more than half the day. Four years ago and living at home she was barely six stone and slept 16-18 hours a day. We never thought she'd survive. Now she could easily go on for another 5-10 years.

Being a carer 24/7 to someone who kicks off in the night- banging on windows to escape, throwing glasses of water is incredibly hard.
Eventually being cared for in shifts is the only way to proceed.

Husband and I visited today after their lunch time. When we arrived pil were sitting side by side, in armchairs, in the conservatory; father holding mothers hand, with carehome manager and SW along with one of the carers standing in the background in attendance. It appeared to me they were gently ascertaining their wishes ‘without’ family members present. A relaxed friendly, caring situation. Smiles all round. We joined in their little meeting and listened. Father has capacity, when asked, he is certain he wants to remain in the carehome. He couldn’t sing their praises enough. Mother was in agreement; she waxed lyrical about ‘her lovely family’ her love for her husband and he reciprocated. The whole attendants were in raptures about how they came across. They are armed with all this information for the meeting on Wednesday. The carehome manager is now aware of Csil’s huge concern over father’s diet (csil is obsessive and micro manages everything) but said to us that as father does have capacity they cannot refuse to let him have what he chooses as that would be legally classed as abuse. They would however inform the chef to tailor his choices (reduce the carbs and increase the veggies for example) for diabetics. They are going to get advice from dietician from the health team at the surgery. They are bending over backwards to accommodate their needs this did come across to me.

However: csil had visited earlier after breakfast; I asked carehome manager if she thought she had reassured csil. “Definitely not” she said.

Nsil phoned me later: csil is visiting other carehomes in the area.

After the meeting and when we were alone with pil, mother asked me if she had meat in the oven and looked at fil and asked him if he had his key for the house for when they go home.

Hopefully with PIL expressing their wishes and DH and BIL supporting them the SW will not be allowed to move however much CSIL kicks off?

Perhaps CSIL needs to be told that there is not a care home where PIL can be micro managed with HER wishes. If she carries on the care home May end up having to charge her with harassment

Could it be she underwent such a huge trauma losing her husband that she is trying to control this situation and is going way overboard?

God, sorry. Read your update op. Fingers crossed your inlaws remain stable and content

Genuinely, she is happy and is awake more than half the day. Four years ago and living at home she was barely six stone and slept 16-18 hours a day. We never thought she'd survive. Now she could easily go on for another 5-10 years

Wow that's quite something isn't it, a good care home, or appropriate and well-managed sheltered housing can potentially give very good quality of life

Hearhere A lot comes down to good luck and whether the 'staff' naturally bond well with the resident. My DM, I suspect, would rather have exited the planet four years ago.

Little nuggets from Slugslasher's commentary suggest assessing home seems a very positive place and potentially good fit. It's impressive that the Manager is actually on the floor, listening to and watching the residents. Having both together in the conservatory is very reassuring. It's good too, that the Manager know's what FiL's rights are and seems prepared to uphold his position to Csil. Also good that the chef is on site and so meals are freshly made and can be tailored. Also impressive is that the Manager has actually spoken to two of the siblings in the space of one day and is preparing 48 hours ahead for the social worker meeting on Wednesday. This is care home gold . Slugslasher everything crossed for you and yours.

She’s also contacted pil’s surgery and got this week’s records of fil’s blood sugar counts which were 10 points lower than the results csil was blethering on about. District nurses have been monitoring and recording whilst they are in there as opposed to Csil (who has been going in with her equipment and doing it also). They are getting the picture now of who they are dealing with. It is going to be interesting how she handles these professionals on Wednesday.

I could write a book about csil. I was 17 when I met her she was 14. I got to the age of 49 before a lightbulb lit and I put her out of my life. It was a huge relief to me to go no contact. I cannot/will not engage with her.

@Wizzywig - all I will say about Csil is she needs help.

Care home manager is female. So is SW.

Slugslasher my reference to 'his' was that the Manager upheld Fil's position to Csil. Brilliant that she as non-family is prepared to put his views and opinions ahead of Csil's and saying that she is formally obliged to as he has capacity.
And what an amazing, thorough woman she sounds! How good is she taking the independent 'data' from the district nurses / surgery so she can't be told she is amending records to recruit new business.
I think it was Random who said up thread to be good to the staff and those who take on the role of carers for your PiL. Absolutely this if the financials all work out and they are taken on by this assessing care home. I've probably come across about six or seven care home managers and this woman already sounds she is up there with the best.

She’s turning around this care home according to SW. We’ve read the reports and they are improving. Csil will always look for the negatives,that goes without saying.. I witnessed a carer going round and kissing all residents as she went off shift. Same carer came in on Saturday morning on her day off to tell them all about her night out the night before and how her child had got on in a football tournament. A rough diamond with a big heart and a loud Geordie accent - (think Cheryl Cole on steroids 🤣). Staff laughing and joking: “Hands up if you think I’m gorgeous” that sort of thing. Mother looks on bemused, father laugh out loud. Csil complains because she saw the staff outside having a fag break. 🥴

Everything crossed for tomorrow.

Indeed. Good luck.

If there are three siblings and fil then csil is outvoted isn't she? Strength in numbers and all that. She is a lone voice. Good luck today.

Quick update: Csil is not convinced ‘this’ carehome has got adequate procedures in place to monitor fil’s diabetis (his blood sugars were dramatically up the first week he was in there; it was ‘she’ who flagged it up, brought gp in to increase his insulin and mentioned diet control; they appeared clueless then when challenged. This has spooked her. She isn’t confident that she can trust them to safeguard him because she maintains father hasn’t the capacity to make the right (safe) choices when it comes to picking his foods. ‘She has a point. (His pancreas has packed up, he needs this monitoring acutely). Father is getting assessed for mental capacity next week. He appears lucid but we know he as memory problems and his story telling is outlandish. (“Care home will be under attack at at 2.30 pm, we’ve got to be ready...”) recent example.

Fil backtracked (without any coaching from anyone) on his decision when asked, on staying in a care home (any care home) because he was worn out with mother Whittering about her wanting to go back to her daughter’s. On more gentle questioning agreed that his daughter couldn’t carry on any more and accepted this is the way it is. Mother reiterated - “she doesn’t want to be a burden” and followed his lead. Of course she then forgets and the whittering will carry on.

It was confirmed this is the right decision, in a meeting without parents present - Csil will not/cannot take them back.

SW has funding confirmed for another week’s respite to enable Csil to investigate other carehomes in the area. Husband is going along with it although has said he was happy for them to stay where they were with a view that they could be moved later if the family found they were not happy with their care. They can’t afford top up fees, this home doesn’t charge them; csil is on a mission to look elsewhere we (H and I) don’t hold out much hope that we will get 5* carehome with no top up fees that can take a couple that will meet with Csil’s expectations in a week’s time. Bil had to rush back to work, not sure what his opinion is yet but I assume he will agree with H.

Ongoing..

Delurking to wish you, the whole family, all the best. Unfortunately, as I telescope forward, I can see us in a similar position, though my sister is not like your csil; rather she is sure her way is the only right way...despite my DPs protests.

A very happy update: Csil (all due respect to her) took it upon herself despite offers of help from H to scour local care homes. She found one rated ‘outstanding’ that has dementia care along with end-of-life facilities. They had two rooms available so both were transferred in last week.

We were away that week visiting our newborn at the other end of the country so only managed to visit them after their move.

Pil were disorientated during that first week with ‘challenging’ behaviour. Mother fretful, anxious and frightened; father confused, agitated and on high alert (for her) manifesting in him thinking he was back on guard in the army. Both unhappy and frightened.

When we saw them yesterday both looked like two frightened rabbits. They had taken to sitting in one of their rooms together, refusing to venture out. We managed within half an hour to lift their mood and show them round their ‘five star hotel’. We explained (as have the other sibs) the situation. Their lack of memory impedes their progress because although they understand when talked gently about the whys and wherefores within minutes it is forgotten and the worrying recommences.

It’ll take time. It is hard emotionally for us all but now at least, the siblings are on the same page.

Csil has gone away for a few days for a well-earned break. Relationship is ‘cordial’. We have a long descending road to travel together but there is huge relief and comfort knowing their needs are being met.

Thanks all. This has been helpful writing it down.

That's really good, hopefully they will settle a bit more over time. If SIL not happy with this home I guess it will be time to put your foot down - like with schools there is no "perfect" care home but moving them is detrimental to their emotional wellbeing.

Congratulations on a new baby baby in the family too!

Thank you so much. Two ends of the spectrum; joy and sadness with us switching between the two.

Great news but yes, don't let her move them again. Each move will be harder and take longer for them to settle. It may already be too late for your MIL's brain to create memories and maps of this new home. It sounds like FIL will be able to in time, and guide and reassure MIL.
Hopefully they'll settle and be happy here.

Gosh, Csil is persistent. If these are fully funded places she is a marvel (or has terrified the SW team).
Now you can go visit your grandchild in the knowledge everyone else is safe and in the best of hands. Delighted for all of you.

Thanks all. All credit to Csil on finding somewhere ‘she’ is happy with.

Funnily enough despite the ‘failings’ of the respite home, I and nsil feel their emotional needs ‘were’ met because they treated then as ‘people’ with names, histories and personality. Whilst current home is far superior in surroundings cleanliness and order we find the whole atmosphere dull and vacant. Not once have I seen a carer call either of them by name, reassure, or in fact ‘talk’ to them. Functionally their needs are met but the pair of them are sitting like little children, needing permission to move. We can't be there all the time - when we are, we leave them reassured and smiling. I know within minutes they have forgotten we have been. They then revert to frightened rabbits. The other home was excellent in keeping a happy jovial atmosphere; something obviously lacking where they are now. Such is the nature of dementia - we can’t achieve perfection for them. I know they are very lucky. Fully funded safe clean care. So sad for them. So sad for us to witness.

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!