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.
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.
Quick update (for timeline purposes).
We as a family have been getting on with life whilst paying weekly visits with parents in the care home. Nsil, bil and we are observing no serious concerns with parents but we are getting no end of drama from Csil.
She has this week been ramping up drama after drama which after our investigations are all ‘storms in teacups’. It is getting to the stage where due to csil’s accounts of her dealings with the home, the staff’s professionalism, care standards, procedures and confidence in the care-home’s ability to look after parents are coming into question. On our investigations we see no cause for alarm.
Csil is now working part time; her need to ‘keep vigil’ on the home is becoming harder for her to manage, consequently her anxiety levels for them are becoming HUGE ISSUES. When we investigate for ourselves there are none more than to be expected. ‘Her’ versions of events are dramatic and overblown, causing all of us alarm and distress.
We are now in the thick of trying to find what is fact and what is fiction.
Staff are now up against it dealing with Csil. Her manipulations hold no bounds but we are remaining calm and not rising to her provocation.
Nsil has no ‘discretion’ button, she is telling staff what we have had to contend with in the past regarding csil. I and DH are just trying to deal with facts and remain calm. Pil as far as we can see are being well looked after, barring accidents (mother had a fall) and has suffered viruses - all to be expected. Csil is drumming up all manner of problems which on investigation appear to be ‘wolf crying’.
It is hard going without all this added drama. We are remaining. resolute that we will visit as and when. Csil I think is doing this to call us all to heel.
Slugslasher you can only do what's best for your p-i-l as you have done throughout. It's perfectly possible that the manager of the care home may at some stage ban Csil from visiting. I'm aware of this happening elsewhere. If not banning, maybe restricting visiting to her to only between a certain period ie 14.00-16.00 on a Friday. Is Csil reporting the care home to the Care Quality Commission? Might be worth a discussion with the care home manager to hear how things are escalating.
Currently on to it. We had to get both H and bil’s name onto the ‘next of kin‘ register so that we can gain first-hand information regarding pil status. H has now been called out today (as I speak) to accompany mil for hospital appointment regarding swelling of foot; worry of dvt and ‘inconclusive’ x-ray (following fall) and Chest X-ray following virus infection. Csil is away (work) so he has stepped in. Not sure if carehome manager is ‘arse-covering’ or is genuinely concerned. I have declined going leaving H to ascertain the situation. We are now not trusting csil’s accounts of what is happening due to her history of ‘wolf crying’ and H is stepping up. Bil is still working 6 days a week and very angry at csil’s manipulations; Nsil is refusing now to step in for him (due to csil’s actions) and I am keeping at arm’s length due to being no contact with Csil so H is assessing the situation on his own. It’s a bit of a nightmare presently but we are aware this is going to be a downward spiral and we need first-hand info instead of csil’s drama. Going forward we will judge situations first-hand. Up to now we have been happy with the care they are receiving. Csil is flagging alarming concerns after 6 months of relative calm. Not sure until we investigate ourselves whether they are valid.
I guess you are concluding that a fourth care home within a year would really unsettle them and might make them even more frail...
Our newest care home dipped after six months when there was a bit of a staff exodus but it has regrouped and is getting better again.
We've got my DM on a DNR and not go to hospital but stay to be nursed in situ. I have been minded that if the care home dipped further I may have wanted to amend this request and discuss with my DSis. Christmas and NY is always a very stressful time with illnesses.
The SW has just done an annual review for DM. All fine. Your SW may still have your P-iL on their radar and that might be another port of call if CSil's behaviour escalates. Fingers crossed for a positive outcome.
H spent all afternoon at the care home yesterday and well into the evening waiting for an ambulance to take mil to hospital as she (as was later diagnosed) tested positive for flu. He sat with her until a bed was available until the early hours not getting home until 2.30 am. No fracture of foot, (bruised and swollen - no pain) no dvt and no chest infection. During the time at the home he had meetings with care home manager and staff. It is apparent to us now that Csil is telling us her versions of events that are so far from the truth that we can no longer trust what she says. Csil has also told care home staff that H has major concerns about their care which is simply not true. It appears to us that Csil is playing ‘silly buggars’ with all of us. No idea why. These people are professionals, they remained professional throughout his meeting but it is apparent that they are finding Csil difficult.
Relationship with Nsil, Bil and us with Csil is now even more strained as we have now following text message conversations said any concerns she has will be validated by us with the home, then we will draw our own conclusions.
Meanwhile I visited with H today and could see a busy home with pleasant staff and well-cared for residents who were genuinely concerned about mil (who was admitted in hospital). Fil sad and worried and confused. His dementia is spiralling, he ‘is’ hard work but I witnessed care and concern for him which was quite lovely.
Csil is not happy with us and is livid that “we do not believe her”.
We carry on.
All good wishes to you. I suspect Csil’s new work colleagues will also be experiencing a changed dynamic in their work place.
We are currently at the other end of the country visiting our adorable (toddler - how did that happen?), on a pre-arranged visit.
Csil has gone no contact with all of us despite being requested by hospital staff to inform family members of mil’s status to avoid answering phone calls.
Bil is visiting mil in the evenings after work. Mil is in isolation, on oxygen and drip and is quite poorly with this flu virus. Staff asked him last night if they could move mother into a single-bed room as she was in a 4 bedder blocking the other 3 due to her being infectious. Bil was surprised they were ‘asking’ and said by all means but “why ask my permission?”
Csil had told them she did not want her moved because it was too isolating (!). I don’t know how she does it!
A bit of a nightmare going on for all us at the moment. Mil now has pneumonia and still tests positive for flu. I’m not sure if she will be strong enough to get through this. Meanwhile fil has gone into a depression and has refused food for the past few days. It appears (to me) he may have lost his will. I am currently down at the other end of the country helping with a very poorly baby as H drove back home on his own to be with his family to assist. I had to make a difficult decision to remain with grandchild knowing one of them may die before I get back home. The last I heard (last night) Csil had ordered an ambulance for fil because she was worried about his heart. She will have waited hours for that and then hours (I expect in A&E).
Little grandson is not bouncing back from whatever virus he has picked up. I am needed here to help as they are juggling work with no backup as their nursery can’t accept poorly babies.
What an overwhelming situation for you all. Hope your little grandson soon feels better
Slugslasher, you are in the right place looking after your grandchild, and your husband has bil and nsil for support . I just realised that your first post was exactly a year ago - what an awful lot life throws at us sometimes, and how things change in a year.
Despite it all we are a good team. Thanks for good wishes. Fil admitted with chest infection and is on a drip for dehydration. Csil is ill now. H sent her home and told her to stay away for 48 hours. Family pulling together. Friends too. Other grandparents being drafted in at the weekend I’ll return home by train and hopefully be able to support H and in-laws.
Yes it has been a year since my OP. Blimey!
Oh my word, what a year you had! I hope your Grandchild is on the road to recovery and the others are comfortable throughout their troubles.
There's a hand to hold here if you need it 🤝
Fil responding to treatment, is the darling of the ward. May be discharged soon.
Drs will be discussing with family no longer treating poor mil who because of her complex needs is struggling. I think all siblings will agree. Not sure if Fil will be included in the decision-making. He is aware she is isolated because she has flu and understands he can’t visit because of it.
Meanwhile I am nursing a very poorly baby. You full time working parents - I just don’t know how you do it. Both parents here are 50/50 and share the load but it is so tough isn’t it. Throw in the mix they have builders in. (A subject for another thread 🤓). Other grandparents coming tomorrow, I am going home too.
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