Stubborn father and advanced dementia mother. Where to go from here?

[Coroico97]

Not sure if anyone can give me any advice but there seem to be so many others having a hard time, I thought I would ask for people's views. Apologies in advance for long post.

I am an only child. I have a loving husband, two wonderful young children, and a stressful 4/5 day a week job. My mother is 88 and bedridden with advanced dementia. My father is 85 and CROSS. He is the most stubborn man, although has been (and in many many respects often still is) a wonderful wonderful father and friend to me. HOWEVER. He is a bit spoilt and very very angry. He is getting frailer and frailer and is constantly shattered. The main reason for this is because he will not accept that this terrible thing has happened to him (my mother having dementia).

He is a huge control freak. Has been all my life, but in a loving way, IYSWIM. Had my mother on a pedestal. Worshipped her (and me). But totally controlled her and everything in house. She is now bed-ridden and he refuses point blank to move her into a home. He adores her still and stands by her bed holding her hand for (when he is not asleep and remembers she is there). She has a wonderful local carer who visits a few times a day (and cooks and does washing for them both) and a caring company who visit too and help with my mum. He is totally deaf and becoming confused. He and my mother are there alone all night. He cannot hear the phone even when it is next to his ear.

He refuses to move out and refuses to move her out. He is only just managing - even with help. He spends HOURS ranting to me, his wonderful carer, his local friend who spends HOURS helping him with paperwork and all sorts of things, and is kindness itself. He is just FURIOUS with whole situation and takes it out on everyone. He was convinced he also had dementia so I took him for a scan at local hospital. Has come back clear (relief). However - of course - he is convinced the scan result is wrong, cue half hour rant on how rubbish NHS is and GP (who is fab) and everyone. he is monstrously self-pitying and even stamps his feet when he doesn't get his way. He is realising the sad fact that however much of a mover and shaker you are in earlier years, the world moves on and people GET OLD!! How do I make him accept his situation and stop fighting everything and everyone all the time? He is on anti-depressants (that was a battle) and the dose has been upped but doesn't seem to be working.

Worse - he hates having carers in the house and so has them for as few hours as possible. Hence, no carers there for 4 hours in middle of day. He goes to sleep - does not go near my mother (forgets, falls asleep). She is totally alone and sometimes scared. Carer sometimes gets there and she has clearly been very distressed. He poo-poos this and says she is fine (as he knows best, of course) and can be aggressive. EVERYONE (including me) is scared to confront him and tell him how it is.

Can anyone force him to move? And should we? Or force him to put mother in a home? And again should we? At home she is beautifully looked after and content when carers are there, but I worry about all the other hours. No one would hear her call out. Sometimes she makes moany noises (which I believe is common) and he has started to get annoyed with her and says, "No point making all that noise, no one cares about us/is listening" type of remarks. He refuses to be separated from her. He says he wishes he was dead/she was dead, etc. He has been seen my local older person phychiatrist and denied point blank that he would ever harm her or himself. Has now cancelled follow-up appointments (NHS crap remember) and has been 'signed off'.

I visit every two weeks (they live quite a way away), often without children as they are too noisy and boisterous for him, although he has a lovely relationship with them and adores them, and they him. He is good at putting on a brave face. He is GOOD man in a bad situation.

I want to help him/them so much, but HOW??

I am so sorry that your parents are in this situation, but I have no answers for you. Your dad seems very frightened of losing your mum which is understandable, and this is making him angry because it is beyond his control. The only thing I can think of is sheltered retirement housing, of a care home that would take both of them. There was a couple in my Mum's previous home.

or a care home

You just need to be there, let him rant and decompress. Because if I was watching the person I'd loved all my life dwindle away with no hope and have to let strangers into my house 4 times away, I'd be livid. In fact, watching my mum and dad go through it makes me furious with the world, and my dad def is too.

There are two issues here:

First your dad's anger. Nothing you can do about that. His prerogative. As long as it is just anger/understandable depression and not dementia of some sort. (How does he score on AMTS? AMTS score - it's a very rough guide, read all the bumpf, but can give some clues)

Second and MUCH more of an issue, your mum's vulnerability. It sounds as though he is not capable of caring for her; he is actually putting her in danger if he forgets she's there/can't hear the phone and so forth. That's not fair on her.

My approach would be to focus on getting your mum the quality of care she deserves and needs - speak to social services, tell them you think your mum is vulnerable.

Hmm, not dissimiliar to my situation I must say.

We did get Mum into a home. Savings wise, don't expect much change from £1000 a week unless your Dad is skint or you are Scottish (it's free up there) or live North where it is cheaper, you can forget about the nest egg.
And your control freak Dad will not be chuffed about the nursing homes, such as some will put your Mum to bed at 5.30pm even in summer, ruling out evening visits and so on. You find these things out after she's moved in. What about respite care, one week somewhere to give him a break? Look at carehome.co.uk for nearest nursing homes to you, and remember your Mum will need a nursing home, not a care home. And she may be surrounded by shouters, noisy dementia sufferers.

My advice? Hmm. Rig up a computer thing with camera so you can check on your Mum and when she goes to bed, eg she can be in her bed by 6.30pm and you can check that online, so you have some say, an overview. How much this would cost I do not know. We got bumped into putting Mum into a home by the discharge team at the hospital and if your Dad is skint the state will pay, otherwise it will prove expensive. Then again it is stressful waiting for him to screw up, esp if he is deaf.

bTW how much does it cost to have a carer visit and when is the latest they come? I would be interested.

Oh, one other thing. It is possibly caring for your mum that helps your dad hold it together, esp if he has few other friends or interests. Once she moves out, he will find it is a large, empty cold house to rattle around in, and he may lose his grip generally. Then what? But it could be for the better, just be aware of the pros and cons.

Coroico

Just to add - care homes aren't free in Scotland. They are about £100 per day as with the rest of the UK. People can be eligible for "free personal care" for help with washing, dressing etc whether living at home or in residential care but that's about £100 per week.

Ideas-
assuming you're in the UK, can you ask for social workers to assess or reassess your parents needs. Each would have their needs assessed ad individuals, and your dad should be assessed as a carer too. You can attend and provide input to these assessments.

I don't think your parents can be forced to move unless they're considered to lack capacity to make these decisions. Your mum may fit that criteria, if anyone has Power of Attorney I assume it would be your dad though? If you can get POA for either or both parents yourself it may br useful in future.

There may be local organisations that can help with respite, befrienders etc. A carers' organisation may be able to help you. Let your GP know you're a carer too.