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Supporting spouse - PIL, dementia, controlling SIL

(184 Posts)
Slugslasher Wed 28-Nov-18 10:28:27

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.

Spaghettio Sat 12-Oct-19 11:07:31

@Slugslasher I followed your post last year and it just popped back up on my feed. I just re-read it from the beginning and all I can say is WELL DONE!

You, DH, BIL and NSIL have navigated an extremely difficult situation and it appear that PIL are now in the best possible place for their needs. And not only that, CSIL is off your back.

You deserve a medal.

MereDintofPandiculation Sat 12-Oct-19 09:05:25

However, I feel sad at what is to become of my parents, who are 10 years beyond your PILs... Try to hold on to the thought that the older you get, the more chance that your body won't outlive your mind.

HunkyDory69 Fri 11-Oct-19 17:11:40

Glad - and sad - to hear your updates as between you, it has all worked out as best it could. However, I feel sad at what is to become of my parents, who are 10 years beyond your PILs...

Slugslasher Wed 09-Oct-19 13:53:15

Little update on ageing parents now settling into their new life: Dad is ok. His needs are met; he danced with me today as a karaoke dvd of 50s music played in the corner of the residents’ lounge. He tells amazingly descriptive tall stories - all tosh but real to him about escapades he and his (long dead) mates are getting up to. He thinks he is in the army, has been on manoeuvres and lives in camp. Although coming up to 92, he is physically strong and fit despite being blind and diabetic. He is bored mostly but refuses (because of habit/shyness)to join in activities but when he does, he enjoys them.

Poor mam however; due to no recall or capacity to hold information, is living in a completely terrifying world. She does not recognise where she is. This is frightening. She cannot , no matter how often she is reassured, believe or accept that she is safe and being looked after. She forgets instantly everything but on a one-to-one conversation understands everything. Imagine that - on/off on/off - info in, info out. Her world is confusing, frightening and she is full of sadness. Her anxiety triggers Dad who gets vexed. We have to keep them apart for their own sakes but they pine for each other. Her mobility is poor but she is with as much strength she can muster still managing with a zimmer. We do bring them together on visits but the staff are on alert when her anxieties upset dad so they separate them.

Csil is happy with their ongoing care, remains vigilant regarding their health needs and all credit to her, they are looking well. We are all regularly visiting along with their extended family. No arguments - we find no communication with Csil as a sign all is as well as can be expected.

Slugslasher Mon 16-Sep-19 18:41:09

I’ve got my maths wrong; mil is 88.

Just a quick update for those interested. Pil’s situation is still stable currently. Both are slipping further into the abyss that dementia is. Mil still cannot comprehend where she is and why. She laments her life and implores to be back “to her cottage” - the house they lived in when they first got married over sixtyseven years ago - long pulled down and gone. She is sad and fed up, anxious and frightened, but is overjoyed when visitors arrive and knows who we all are. She just cannot retain any information so her world is frightening and confusing. She is mobile with her little trolly, still continent and enjoying meals. On a one-to-one conversation she understands but then she instantly forgets so visits are a constant ‘placate, reassure and divert-anxiety operation’; her constant fretting agitates fil who if not supervised can make him agitated and hostile to her. He can ‘turn on a sixpence’ so staff are on alert when to separate them. They sleep on different floors but are exposed (especially mil) to other demented souls in a far worse state than they. Poor mil sits in a chair upstairs watching others knowing she is amongst strangers and gets quite upset. Her world is frightening.

Fil’s delusions are outlandish. He never stops talking about long dead friends and family with whom he is convinced he is out and about on the town. Both spend a lot of time together sitting in his small bedroom, neither of them want to sit in the large airy sitting room because they don’t like being exposed to the other residents whose behaviour is upsetting. The staff have to keep any eye on them to avoid fil’s triggers (mil’s anxiety) and know when to keep them separated. They have visitors mostly every day from various family members. I go once a week, H goes extra times; we all manage as a family to try to keep them from being isolated. Csil manages their ‘health issues’ and is vigilant which is all good from their perspective. Her anger with us has dissipated and contact with us is merely on a ‘needs basis’.

They both still have sparkle in their eyes (compared to some of the other residents in there) and physically have in my opinion years of living to do. Both have some quality of life - fil more so because he likes to listen to the sport channels on his radio with his earphones. Mil not so much due to her anxiety and sadness at her situation. We are all muddling along as well as we can.

So pleased we stood our ground. I suspect Csil is relieved she is free from the toil but she will never admit it. We all have our lives back which is good.

Slugslasher Fri 23-Aug-19 23:56:42

Hi all, thank you for your good wishes.

All good currently with pil and their new situation. The carehome is proving very switched on with their needs. We all visit at different times and find the staff very friendly, accommodating. Mil after objecting loudly initially is settling down into acceptance - as much as she can because bless her she cannot ever remember where she is as her memory has no capacity at all. Whilst one can hold a lucid conversation with her; she understands but instantly forgets. I acknowledge how frightening this must be for her.

Fil is deteriorating mentally. His memory is failing and his delusions are outlandish. He thinks he is in some sort of army institution but the staff have got the measure of him and whilst he lives downstairs and mil lives upstairs, they are brought together for some time during the day until mother’s anxiety triggers his agitation (he can be quite aggressive towards her because he forgets she has no capacity). They are being managed with care and compassion.

Csil has FINALLY accepted the situation and is pleased with the care they are receiving. The care Home is nearer where some of their extended family live so thankfully there are more visitors to spread the load. We are currently visiting for a few hours once a week as are Nsil and Bil. Csil has found herself a part time job to supplement her pension and we have stopped paying her our contribution as per agreed.

We are all managing the situation with less friction and pil are looking well and content.

All is stable currently. We are so relieved. They are now 91 and 86 respectively and currently look well enough to live for years. We did the right thing.

Pussysgalore Thu 22-Aug-19 06:10:30

I've just spent almost the whole night reading your thread. My god what a awful few months you've had..
I'm currently battling my own issues with my father having been sectioned due to his dementia, he unfortunately has a personality much like your csil so he isn't being very compliant with anything and is quite volatile, but at least we only have the one to deal with.
I'm so pleased you have managed to find somewhere for both your pil and they are as happy as they can be and I hope you are all starting to get your own lives back a bit.
I'll keep my eye out for updates but I just wanted to wish you all the best for the future thanks

Slugslasher Fri 19-Jul-19 09:12:03

We’re trying. H has shown signs of tension, we both have struggled to not let our own anxieties for them bring us down. We are fairly adept at compartmentalising; jumping from intense anxiety and action to happy grandparenting (with adorable grandson), hosting family visits/holidays and fielding our own social life (that has been on hold).

There will be a sibling meeting called soon: Csil is showing worrying signs of wanting to know all of our diaries so that she can establish (her) expectations of a visit every day. We will (again) be nipping in the bud her need to control (us). We will soon manage our own diary (thank you very much). The carehome is 40 minutes drive for us. We will visit when it is convenient for us; we will have to again be drawing boundaries. Our life will be our own. Our choice not hers. Nsil and brother are in full agreement.

Weezol Thu 18-Jul-19 23:43:05

Long time lurker delurking to tell you how good it is to hear things have improved. Please make sure you and DH look after yourselves and get a bit of time to decompress.

AbbieLexie Thu 18-Jul-19 23:33:19

flowers wine cake for all of you

Slugslasher Thu 18-Jul-19 22:25:26

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!

Slugslasher Sat 13-Jul-19 09:33:33

By the way... the leg is badly bruised (no idea how it happened) no dvt.

Slugslasher Sat 13-Jul-19 09:14:07

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!”

Result.

I wonder how her first night went. She has absolutely no recall. She will have been up all night I expect.”

Slugslasher Fri 12-Jul-19 12:15:22

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.

Fortysix Thu 11-Jul-19 15:43:23

Oh dear.
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.

Slugslasher Thu 11-Jul-19 10:59:01

Quick update:

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!

Fortysix Fri 28-Jun-19 13:38:27

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...

blackcat86 Fri 28-Jun-19 08:42:30

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.

blackcat86 Fri 28-Jun-19 08:41:03

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.

blubblubblub Fri 28-Jun-19 08:19:03

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

Slugslasher Fri 28-Jun-19 07:42:52

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.

crosstalk Wed 19-Jun-19 19:44:02

OP What a huge journey and still no end. I and everyone on MN wish you well.

Fortysix Wed 19-Jun-19 19:40:23

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.

Slugslasher Wed 19-Jun-19 18:39:16

They have said he can be discharged now but we need EMI home for two so they can be together again. Trawling them now.

Slugslasher Wed 19-Jun-19 18:33:45

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.

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