What was your experience of a parent losing mental capacity?

[Rowanberri]

Medical professionals agree my dad is on the verge of losing mental capacity. It’s still there at the moment but won’t be for much longer. What was your experience of this time? What was the process with doctors/social care? How was the moment when capacity has gone decided? What happened then? My dad still lives alone in a flat and completely refuses any assistance, even though we’ve been through social services assessments and they’re willing to offer a fairly comprehensive package (he also has terminal lung disease). He will let me shop online for him now, so I know he at least has food in the house. He woke up with his front door open the other morning and can’t remember whether he had been out or if someone had come in, so he’s beginning to put himself at risk. He will never, never admit he’s lost capacity or that he needs help, so it’s going to be a battle and I’m dreading it. He has no assets, so everything will be local authority/NHS funded.

Should add that I live in Wales and he is in the Home Counties, so it’s not easy to get there quickly, especially as I have a baby and a four year old.

Capacity it is not a one-time thing. You can have capacity to make some decisions and not others, and capacity in the mornings, but not the evenings when you are consistently more ill.
FIL never lost full capacity, but did lose capacity to manage his money. He retained capacity to make medical decisions until he died.

There isn't really a moment when they lose capacity, it's more a gradual loss of cognition which makes them slowly become less mentally capable. My Mum was like your Dad for a year or so, she was hanging onto her home and flatly refusing any home care, so I had to do it. She never got a proper diagnosis because she wouldn't go to the doctor. Good luck with your situation, it's not easy

@antelopevalley that makes a lot of sense. That’s pretty much how it is here atm.

It sounds though like the medical professionals are saying he will need more help.
Will he agree to you managing his money? It is a nightmare to get power of attorney in place after someone has lost capacity, so if you could get him to accept this, it will be a bit easier.
The major other parts for you seem to be him accepting a care package. Even if he does not have the capacity to accept it, no carer is going to come in and wash or dress or help him against his will. It is more likely that either thing will deteriorate and he will accept he needs carers coming in. Or things will deteriorate, and he will be deemed to have no capacity and forced into a home. The latter often happens after an incident whether a fall or the police finding someone wandering about not knowing how to get home.
The best-case scenario that happened with my father-in-law is things deteriorate a bit and he quickly realises he needs to have the carers in.
It is hard.

@ShippingNews caring for her yourself must have been tough. Unfortunately I’m too far away to do anything regularly so I’m having to rely on local authority and GP input. He was due to be moved up here but then told everyone he was fine and didn’t need help. I shall invest in more (non-alcoholic-breastfeeding) Prosecco!

I think in my mum's case we were 'lucky' that her mobility went before her dementia really took hold. So for a good ten years she had carers coming in to her. By the time her dementia got really bad she was unable to get to the toilet unaided and could only leave her home in a wheelchair. So it was just finances to sort out.

@antelopevalley atm we’re heading towards the latter scenario but I’m really trying to avoid it. He’s agreed to financial power of attorney which is good, it’s just anything that requires personal assistance that he won’t hear of.

@Rowanberri A move can make someone with dementia much worse. My father managed okay at home with just occasional signs there might be issues. But it all seemed very low level. Then he was admitted to hospital for minor surgery and it quickly became clear that his dementia was far worse than anyone had realised, even my mother. In his home, seeing the same family members and never going further than the local shop, he copes really well. He had a daily routine where he did the exact same thing every day, which I used to laugh about with DP. But after the hospital stay I realised this was probably one of the ways he coped with his cognitive decline.
A move sometimes is still needed. But do not feel guilty about the lack of a move. It may have been better or it may have made things worse.

Mum lost insight into her dementia really quickly. The insight was the key really to losing capacity for her. It meant that although she was technically capable of signing forms and understanding the implications of power of attorney she didn’t believe she was ill so she wouldn’t do it.
It all happened very quickly and we never had POA. It was an absolute nightmare to be honest.
Keep trying to see if your dad will agree to sign the paperwork, it made things so difficult for us without it.

So much sympathy to you by the way. It’s such a cruel and horrible disease. It’s the absolute worst.

You need to install cameras everywhere to make sure he's ok

Can't help much but just wanted to say this.

That generation is so difficult to accept any kind of help!! Hoping newer generations will be easier

@Rowanberri It is good that he has agreed to power of attorney. It really will make things easier.
Are there any friends or relatives who can pop in semi-regularly just to help monitor how he is doing? If he is kind of managing without carers, even if it is not ideal, then personally I would leave him to decide about carers. But if there comes a point where things are really deteriorating, you can ask for an assessment of his capacity to refuse carers. Actually getting the care might be difficult if he still refuses, but you can seek specialist advice on this if he is deemed not to have capacity.
Be aware the threshold for capacity is very high.

Also helpful if you can get him to agree to one of those alarm things people wear around their neck to alert someone if they have a fall or other problem.

Thanks all. You’re really helping to clarify things. Sympathy to all of you who have dealt with and are dealing with it, it’s so hard. @antelopevalley thanks for taking the time to write so much, I appreciate it. Interestingly he moved to a new flat a few weeks ago (not far from his old one - his choice) and things have really deteriorated since then. I think it’s exactly what you say, his routine has been disrupted and now the cracks are showing. He has a red button and he has a service who make sure he checks in by pressing a button each morning so I have some reassurance each day.

The bar for capacity can be quite low in layman's I think. My mum told the social worker that the other ladies in her hospital ward had thrown a party for her but she hadn't been able to go because they couldn't find her. Yet she was judged to have capacity and to be able to make a decision about her future care. Fortunately with encouragement from family and the social worker she agreed to try a residential home. It took two months for a place to become available and week by week when we visited her it was clear that she was deteriorating all the time. Now a year later she can not really hold a conversation and isn't sure who I am.