Advice pls! Elderly parents separating, various issues with DF

[SueDenim7475]

Name change, facing a few horrible issues and would be grateful for any experiences or advice anyone can share. I'm afraid the below is rather rambling.

My parents are in their 70s, living fairly active lives until recently. DF has become increasingly ill-tempered/aggressive/borderline abusive to DM (we suspect he may have suffered minor brain damage during v long surgery a number of years ago but don't know). He flies of the handle and rages about very minor things and struggles to understand that his reactions are not rational/socially acceptable. He had been having some anger management counselling which was helping a bit.

DF then had to have further major surgery early this year, surgery itself went OK but he spent a long time in intensive care and functionally his recovery has been extremely slow, partly due to muscle wastage. Long stint in hospital, self-discharged after neglectful care there, but my mother really struggled as his sole carer (literally impossible to get any carers to visit where they live - a small village 20 mins from nearest town). Can walk a bit with zimmerframe but needs help showering/dressing and has some continence issues that may or may not be permanent.

He had a number of falls requiring ambulance and paramedics to pick him up so finally agreed to go into a care home for short-term rehabilitative care, working with physio to get strength and mobility back to a level where he can return home without needing DM to do everything.

He is due to be there for another 3 weeks or so, but he is agitating to come home. DM has said no way can he come home until the falls stop as she cannot cope.

However, even if his strength does come back, from what DM has said it is not sustainable for him to return home due to his behavioural issues.

We are likely to need to report him to DVLA to get his driving licence taken away (I'll do a separate post about that...) meaning he will lose independence and would have to rely on her or taxis to get around. This in turn will make him even more ill-tempered and abusive towards DM.

I think physically he will continue to have care needs of some kind - unlikely he could cope with preparing meals/doing laundry/cleaning etc if he didn't have my mother to do all this for him and I think my mother would generally struggle.

I suggested some sort of "assisted living" (I don't know much about the options, and they obviously vary in different places). DM has said there is no way she is giving up the home she loves or her own life/independence to move into assisted living accommodation with DF, but does not seem to think it is sustainable for her to continue living at home with him given his behaviour. He belittles DM, attacks her over nothing (eg putting dish cloth down in the wrong place), was v demanding and ungrateful when she was having to care for him 24/7 etc.

Where that would leave them/us I don't know. DF seems to think he can leave care home after a couple more weeks and go back to life as it was before (including driving). V unlikely simply to agree to move out of family home, so may just refuse to go, but if DM then leaves him he could not cope there on his own (though he may think he can). And DM definitely would not want to leave the family home.

Not sure what I'm asking other than wondering if anyone has had any vaguely similar experiences:

• elderly parents separating generally / refusing to agree on who stays in family home / potentially getting lawyers involved and divorcing??
• trying to persuade elderly parents that it's not realistic for them to continue living independently - having an 'intervention' or tackling this another way
• Experiences of assisted living places or other options for older people who need some level of care but not necessarily permanent move to a care home (but bearing in mind the struggles we have had to get any kind of home carers to visit).

Thank you in advance for anything you can share.

Thanks for your thoughtful comments various.
@CovoidOfAllHumanity the best we can hope for is that he gets back to where he was by I think we accept that may be unlikely. That said, the latest report from DM is that he is making progress and that the physio is pleased. They are due to have an assessment with her at the end of the week to discuss her expectations re the recovery and also how DF could cope with falls once home.

DM and sibling bought him a falls alarm before we decided he had to go into the home but sibling and I both live almost 2 hrs away and there is no one in their small village who they feel they could call on for help. As such I don’t really know how they think it would help, unless DF reaches the point that he is fairly safe to leave while eg DM goes shopping and it’s on a “just in case” basis.

DM would love to have the “old” DF back but his increasingly ill-tempered behaviour meant DM was already finding it challenging to live with him. Having to become his sole carer would have been difficult enough without this but she understandably can’t face going back to the combination of working flat out to care for him and him being rude/ungrateful.

For a similar reason she’s said she’s not willing to move with him to supported living of some kind - she doesn’t want to give up the house she loves to continue to be his “verbal punching bag” (as she’s put it.

If it weren’t for DF’s care needs it may have been more tolerable for her to continue because they can get out and about more and do their own independent hobbies etc.

A GP physical and mental assessment sounds a very good idea.

@workwoes123 DM would continue to cook / do laundry and some cleaning (she’s finally managed to get a cleaner to help) for DF, in the way she’s always done. But when she was caring for him before he needed so much more help (continence issues meant all the bedding frequently needed washing, he needed help with dressing/showering/medication, moving around). She cannot cope with all this so much will turn on how much he does functionally recover in the home.

They did have a social worker visit before he moved into the home but it sounds like they weren’t much help. I will raise this with them though.

At best, as I understand it, even if they did manage to arrange for carer visits, it would be four times a day to help with medication, washing / dressing / toileting, eating etc only. Carers would not take in the extra laundry, nor would they make themselves available to be a ‘verbal punchbag’ - not should they.

Have you, your DM, and your sibling had a proper sit down meeting to decide what each of you is willing to do in terms of providing care ? And how far your individual and collective responsibility towards your DF goes ?

@zafferana he does have some memory problems too, but it could be a combination of things. It’s hard to know what’s seen as in the normal range for older people. But hopefully the GP can assess.

Memory problems are not 'in the normal range' for older people.

Lots of older people, and their families make the mistake of thinking that memory problems are in some way normal as you get older - they are not!

Any memory problem is not normal, yes it might be a combination of things but those are all a combination of health problems that a healthy older person doesn't have.

It needs checking out by his GP.

@workwoes123 the care agencies we’re now looking at (which may be able to offer something in the longer term) have said they will do laundry and change bedding. And I’m quite sure I didn’t suggest that the carers should make themselves available to become DF’s “verbal punch bag” 🙄.

However, there are carers with experience of dealing with challenging behaviour, far worse than DF’s, not least because dementia patients can suffer from aggression. This is again something that we have discussed with the agencies. Thankfully the care system doesn’t completely turn its back on people with brain injuries and/or other behavioural problems….

I think as much as anything what we would need is someone to be present in the house with DF a couple of times a week so DM isn’t effectively housebound and and go to the supermarket or whatever. At the moment it’s hard to know how much independence he will have gained in terms of being able to shower and dress himself, but until and unless he is more able then returning home just isn’t an option at all.

Unfortunately sibling and I both live a 3.5-4 hour round trip away, work full time and I have young kids so are very limited as to the in-person help we can give (plus they don’t have a spare room to stay over so it’s a campbed in lounge job). Sibling did go up for half the week for a couple of weeks during the really difficult period before DF went into the home, and I went up a couple of times in the day to help (eg go and look round care homes or spend afternoon with DF so DM could go shopping), but it’s not sustainable for us to do anything on a regular basis.

Thanks @AnnaMagnani but the consensus seems to be that a certain amount of memory loss is normal as you age, eg: www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/normal-ageing-vs-dementia

From what I’ve seen of DF, his behaviour is more in the “normal” column but I would need to discuss with DM as I don’t live with him. Concentration and slow reactions are definitely an issue though.

It’s not helped by the fact that he is quite hard of hearing so often misses what people say (so it can be hard to tell if he’s forgotten eg a conversation or if he just didn’t hear it all).

But either way I will be strongly pushing for a GP physical and cognitive assessment.

The article you link to really doesn't confirm that memory problems are normal as you age - the examples it gives as normal are very minor eg losing your keys and then being able to find them again, going into a room and forgetting why you were there but figuring it out.

What you are describing, particularly his becoming very irritable and aggressive is definitely in column 2 of not normal.

Before MiL was discharged, an OT went to the house to make sure there was adequate provision for her, or they wouldn't discharge he back home.
Has this been mentioned to you?

Would your parents be able to pay for a private cognitive assessment? We did this for my dad and it helped us to understand his needs. Would an option be that he agrees to moving to assisted living to 'fully recover' with the hope that he settles there and is happy to stay. You can get extra carers to come to the assisted living place as it's likely to be in a more populated area. He would retain some independence.

@AnnaMagnani

The article you link to really doesn't confirm that memory problems are normal as you age - the examples it gives as normal are very minor eg losing your keys and then being able to find them again, going into a room and forgetting why you were there but figuring it out.

What you are describing, particularly his becoming very irritable and aggressive is definitely in column 2 of not normal.

I agree. Unfortunately GPs will sometimes dismiss abnormal behaviour and memory problems as “just getting older”. It took years for my mother’s dementia to be diagnosed and by then things were very bad indeed. It had been obvious to her family for a long time that she wasn’t right. @SueDenim7475 if you ask the GP for an assessment you’ll need to be quite firm. They need to know how he treats your mother and about the falls.

By way of update, things have taken a turn for the worse in that yesterday DF discharged himself from care home (where he is meant to be for at least another fortnight), against all advice from care home and against family wishes. It seems to be motivated by an obsession to get his catheter removed and a belief this will only happen if he goes home and can make an apt with his own GP. When I tried to talk to him he just shouted down the phone that the care home was “A prison!!! A prison!!” And hung up on me.

DM accompanied hi home in a taxi (her car broke down on the way to see him so is now at the mechanics) but is threatening to leave him in both senses of the phrase. Whether she will see this through is TBC as she has her own issues (loves to act like a martyr so she can throw herself a massive pity party). And she flip flops from saying she can’t take any more, will leave, will come to stay with us (I invited her so she wouldn’t have to go home with DF) to then continuing with him and enabling him. As a family we wonder if we just need to leave him to it, to trying to cope at home on his own (which he clearly can’t) until he has a fall or whatever other crisis and then has to go back to hospital. We would keep social services fully involved. But as I say DM flip flops so who knows where it will end up.

He is convinced he is fully recovered and while he is much improved he had not been able to practise going up and down steps (they have had a stairlift fitted but there are steep steps to get into the house, and also single steps on the ground floor), hand rails cannot be fitted for another 10 days, he would still be unable to get up if he had a fall which is likely.

Sibling and I spent yesterday speaking to care home, GP practices (his own and the care home’s) and social workers. We explored with the care home, before he left, whether he could be declared mentally incapable of making own decisions but they said a GP would need to determine this and the care home felt it was unlikely he would meet the threshold.

He is also now apparently intent on driving again, but thankfully seems to have accepted he should do a driver assessment first. Either way, my mum’s car is at the mechanic and his car hasn’t been used in months so unlikely to start. and is being collected within the next day or two by the mechanic for its MoT and to get it going again and in the meantime my mum has hidden the keys.

I am going to seek an urgent apt with his own GP today to alert them to concerns about driving so they can take action (not least in case DF changes mind about doing an assessment). I will also ask for a private referral for a full cognitive assessment @Doingnotthinking .

As I’ve said throughout my posts he has a number of clear cognitive issues that have deteriorated and urgently need investigating. But on the question of memory alone, which is what one my my earlier posts deals with - just the point on memory - I think he is in the range of what the Alzheimer’s charity says is normal.

@Hadalifeonce thanks, yes we had private and NHS OTs round before he went into the care home.

Oh goodness. It may be that this is the crisis which will precipitate some form of resolution, but it can take a while. Please do consider taking a random day or two off work soon to do not very much - not to rush over there but just to do life admin and rest and be with your kids. I've ended up having a crisis of my own some months after DM getting ill. It us ridiculously stressful.

That’s really good advice @PermanentTemporary, my life admin to do list has at least 30 things on it! 😱

I have today spoken to the GP who said they could do a cognitive assessment if DM booked one for him and DF agreed - I think he probably will on the basis he thinks it will prove us all wrong and he’s fine.

thankfully he has told his insurers about his health issues and they’ve said he needs to do the driving assessment before they will insure him to drive. I do think he will go along with this, again because he’ll expect them to congratulate him in his impeccable driving skills 🙄

Sounds very stressful.
FIL took 4 driving tests before they would reinstate his license.
He is 90 and a determined old man.

Gosh @Weenurse he sounds like my DF and I fear he will be the same….

I'm going to echo the comments others have made about possible dementia - a friend's husband had early onset dementia and with the benefit of hindsight, aggression/violence with no previous history was a sign.