Supporting spouse - PIL, dementia, controlling SIL

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!

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.

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

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.

Mother in the meantime is walking the corridors crying, looking for him.

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.

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.

Bloody hell!

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 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.

Thanks all.

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.

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

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.