What to do when things are deteriorating?

[sasparilla1]

Things with my parents are going from bad to worse:

Mum - arcissistic and down right nasty a lot of time - won't go downstairs, oxygen dependent with macular and heart failure amongst other problems.

Dad - has spinal stenosis, recovering from surgery to remove a tumour from his bladder which has left him incontinent and possibly alzheimers/dementia. But he is very forgetful and just not with it.

Mum has a carer in everyday to get her up, privately funded. They have some help with housework, ironing etc, but Dad does the bulk of the washing and drying. But..... to mum's incredibly strict instructions. They don't just put a load a load of darks on like everyone else: it's her nighties and knickers, his shirts and pants. Towels on a 40, flannels on a 60. Just stupid.

Dad has to get all her food and drink up the stairs to her, the stair carpet is ruined from all the spills. He does have a stair lift, but finds that hard with tea etc. My sister and I set up a tea station upstairs, but they decided they didn't like it.

The live in a large 3 storey 4 bed house, but can't use the top storey any more.

They're struggling, or at least Dad is. I'm doing as much as I can, but my mental and physical health is declining rapidly. My dh and I both work full time, my job is stressful and full on, we have 2 dc's - 16 & 10 and 2 x dogs. We just moved into a larger house to months ago, but it's a bit of a project. So I have limited time myself. At the moment, everyone in my house is suffering due to having to increasingly care for them.

My sister is in London - so not always around and not able to pop in as I am. right now, I wish I'd moved away too.

What do I do? I don't actually know where to turn.

Hi I feel for you. There’ll be others who can advise better but the “ positive “ is that it’s hitting crunch point and you know something needs changing. You don’t say if already done this but you can request a care assessment even if they wouldn’t qualify fir state care - I’ll assume they have savings over the £23 k threshold. But social services should offer some direction. Your parents care needs sound very high . be really bullish with social services and don’t admit you can or could do anything.

Have you and sister talked to them frankly and say it’s time they move to sheltered flat or bungalow - and use rest of cash released from their house sale for more caters? Would they consider a care home? You ll have to be tough.

it won’t be long before the decision of what happens to them is taken out of your hands / their hands if one of them is back in hospital then care home.

you probably don’t feel able to but can you just say no - do less! They are making choices even if bad ones and you can say until you get more help or move I’m not doing it. It’s hard but may help?

ignore her strict instructions, she ll huff and puff but tough. You have the right to and deserve a life and your family need you.

in the immediate term say they need more careers hours if they can afford it - / cleaners etc.

dont think that helped did it !

Hard as it is, you step right back, that's what you do. Only when a crisis develops will things change. And refer to social services making it clear there is no family input going forward. None.
What was their plan for coping as they aged in a large three storey property? Surely not to rely on their DC ??!!

I really feel for you but agree that you need to step back, as awful as that sounds.

Do your parents have a SW and do you have POA?

Oh God that's crazy.

You decide what you can do (go round for a cuppa every week plus another phone chat in the week?) and do that.

They quite obviously need to be living somewhere else but to be fair, with someone in early dementia the change in environment would make life very difficult. They've really left it too late.

I think I would make sure that there was some way of your mum getting help (presumably she has phone access) and I might provide insulated tea mugs with lids for the spills. But this sounds completely unsustainable. I think there will be a major crisis but tbh it would probably happen with a move too (your dad getting more confused and starting to wander for example). It isn't your job to fix this or sort it out. You might just have to sit on your hands.

Please ask the same question on the carers.org forum, they’re amazing and so knowledgable and helped me immensely during Covid when my dad with advanced dementia ended up living with us and in trying to get the right care for him.

First thing... have you got power of attorney set up for both your parents? You can and need to so this now before they are considered not to be capable of making their own decisions.

There are 2 types financial and health. Do both!

The financial one will enable you to take over finances, bank accounts, utility bills etc. It gives you the power to act without the requirement to provide to fill the gaps if they are short. You can set this up now and use it (with their permission of course). The forms are downloaded online and then sent in to register for a fee - I think it's about £90 each. If you do it so either you or your sister can act independently then either of you can get on with whatever is needed. (You can do joint action - but this won't help you with the banks etc). (Your sister will be able to take on more remotely this way if need be.)

The health one give you permission to act on their behalf and ONLY applies once they are incapable. However it needs to be signed whilst they have capability.

Hi everyone,

Thank you so much for your replies, and I'm sorry I haven't come back sooner. Dh and I actually (finally!) had a weekend away on our own - at my cousin's wedding. I haven't seen that part of my family for 25 years, so it was absolutely lovely!

The POA conversation is one that I've been meaning to have. Now that I've finally convinced Dad to sell his car!! That's been my focus tbh. I know he's keeping for if/when mum goes into hospital again so he can make sure she has a visitor every day. It was hell on earth last time.....I don't think they realise the pressure they put on me. Or they don't care. Dh thinks they don't care as long as their needs are met.

I popped in last night to drop off some cash. Sorted out mum's Paypal as she had a new card as was trying to pay for her shopping with the old one. Between her bad eyesight and Dad's brain.... oh my gosh!!!

I'm going to follow up on every single thing you've suggested! I have already been in the contact with the Macular Society about their befriending service and my sister has said she will pay for a counsellor.

I thought I'd come back to this with an update......

Things are deteriorating badly: Dad is pretty much doubly incontinent and having huge memory/brain problems, and Mum is just absolutely vile. My sister hardly every comes down any more because it's so awful for her to stay there. But that means mum is being even more dramatic, and I get everything as I only live a few minutes by car away.

They're refusing to move to more suitable accommodation, and I even went and looked at a lovely brand new apartment in an assisted living block. So instead they're staying in their 3-storey, 4 bed house. From what I can see, purely because my mum wants to. She's pretty stand-offish with people, but my dad would love to socialise a bit more.

Anyway, I have a meeting with the parents and an active care nurse later, and then tomorrow the care agency are going in to discuss increasing their care.

I have physical issues with my neck, and I don't think they appreciate or care how this additional strain is affecting me. The physio basically told me last week that I should get used to living in chronic pain.

That sounds so difficult. Has your DF seen a GP about his Memory lapses?

Yes he has, but he passed the memory test. If he's concentrating on something, as he would have been when he saw the doctor, then he's much better. I think there's something going on, but it's massively exacerbated by being exhausted and my mum barking orders at him constantly.

The care agency are going in today but I've already spoken to the very lovely lady who's going in. She recommends a live in carer. It will be easier, and quicker, to implement than carers going in 3 times a day. So I've spoken to my sister and we both agree this is the way forward. Spoke to Dad this morning and I think I've made my point!! I just hope he remembers this later on......