Supporting spouse - PIL, dementia, controlling SIL(184 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.
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.
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.
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
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.
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.
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.
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...
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.
@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.
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