Fast declining Father

[Blakey.anglesey]

Hello 👋
My Father has dementia , although officially he is undiagnosed . He refused to go to the memory clinic 12 months ago . He started becoming confused over 3 years ago but both my parents were too proud to address the issue . Here we are 3 years later with Dad in a dementia unit in a care home . He still recognises me but is super confused and paranoid . I’m not even sure why I’m writing this - just reaching out I guess xx

 

[Palerider]

Hello 👋
My Father has dementia , although officially he is undiagnosed . He refused to go to the memory clinic 12 months ago . He started becoming confused over 3 years ago but both my parents were too proud to address the issue . Here we are 3 years later with Dad in a dementia unit in a care home . He still recognises me but is super confused and paranoid . I’m not even sure why I’m writing this - just reaching out I guess xx

Unfortunately it is part of the journey for many of us @Blakey.anglesey even with a diagnosis. Your not on your own here so welcome.

 

[Gosling]

Hello and welcome @Blakey.anglesey to this friendly and supportive forum.

I am sorry to read about your Father's dementia and that fact that he is now in a care home, I hope you are satisfied that he is receiving a good standard of care, as that will at least be a comfort to you. You know that now is the best he will be, so it is good that he still recognises you. Again take comfort from that. I would suggest.
This is a great place to share experience, pick up sound advice, or just to let off a bit of steam, so I am glad you have found us, You are never alone here and will always find understanding.
Do reach out further if you would like to, have a good look around the forums and ask any particular questions you may like to. Take care

 

[Bunpoots]

Hi @Blakey.anglesey welcome to the forum. Best place to be when you’re floundering!

 

[sue31]

Hello 👋
My Father has dementia , although officially he is undiagnosed . He refused to go to the memory clinic 12 months ago . He started becoming confused over 3 years ago but both my parents were too proud to address the issue . Here we are 3 years later with Dad in a dementia unit in a care home . He still recognises me but is super confused and paranoid . I’m not even sure why I’m writing this - just reaching out I guess xx

Exact same with my mother, she is in complete denial and now we are in a total nightmare. Still no diagnosis either! She doesn’t know me, I’m ‘that woman’
Gp useless. Social services said have more carers in - she won’t have them. Suffers one 30 minute morning call that actually last 15 minutes if she doesn’t touch anything or she’s pushed out even sooner. And yes we pay for it - self funded.
She’s way past extra carers. Flatly refuses any help whatsoever. Anyone official turns up she chucks them out - apparently no one can force her to accept help.
I get her shopping - she says to everyone she goes 3 times a week.
Paranoid over so many things, people staying, & stealing her property, we’ve stolen all her money, someone’s also stolen her home and she has nowhere to live and has to stay in this place……which is obvs her own home.
Wears the same clothes for weeks/months on end - sleeps in them too. Does not wash. Matted hair, toe nails so long she can’t walk properly. She’s filthy. House has started to smell of urine. No cleaning done at all, but she’s insistent she’s done it.
Throws an absolute fit if we try & even wipe down a work surface.
She used to be so well kept & houseproud. Hate to say it but she makes me feel physically sick and it’s not my mother anymore.
Gets really really nasty verbally. Throws things at me in particular, but really not too fussy who she aims at.
Latest comment from SS is maybe a care home more appropriate - good luck with that - think it will end up being a section, she won’t go willingly.
Final straw today, worse than ever, absolutely terrible visit. Can’t go or do anymore or I’m going to crack up totally —already on anti depressants to cope.
I know it’s a vicious decease but jeez I’m not going to have any pleasant memories of her last years (7 to date, last 2 particularly bad)
If only we had done both LPAs, together, never crossed our minds this would be the position we would be in as no history of it on her side of the family.
So frustrating not being able to make her happy & the guilt of actually saying ‘I’m done with even trying’ today is horrible.
It’s good to know we are not alone tho & feels good to be able to off load on here.

 

[Scarlet Lady]

Hello, @sue31. So sorry you’re going through all this. Your mother clearly does not have capacity to understand her needs. It’s a shame that you were unable to get LPAs for health and welfare and finance. Your only option now is to obtain Deputyship through the OPG which will be costly and time consuming. Other than that, as you’ve said, you may need to wait for a crisis to happen. I’m sorry that I haven’t got much positive to say, and hopefully others on the forum may be more helpful. The only other thing I can suggest is that Social Services have duty of care here, not you. They have already suggested a care home may be the most appropriate option. Let them get on with it.

 

[sue31]

Hello, @sue31. So sorry you’re going through all this. Your mother clearly does not have capacity to understand her needs. It’s a shame that you were unable to get LPAs for health and welfare and finance. Your only option now is to obtain Deputyship through the OPG which will be costly and time consuming. Other than that, as you’ve said, you may need to wait for a crisis to happen. I’m sorry that I haven’t got much positive to say, and hopefully others on the forum may be more helpful. The only other thing I can suggest is that Social Services have duty of care here, not you. They have already suggested a care home may be the most appropriate option. Let them get on with it.

Thanks @Scarlet Lady. We did the finance one as she’d never handled that side of the marriage - was always dad.
Not much advice anyone can give on this one really, it’s just good to vent it out and ease some of the guilt.
I’m afraid it will be down to SS. I just can’t mentally do it anymore. I’m not going to bother with deputyship for health as it would just be another hoop to jump through - I’ll have enough cleaning & selling her home to pay the fees in the coming months.

 

[thistlejak]

@sue31 - re Deputyship for health - these are only granted in exceptional circumstances for a specific reason - so don't bother with an application. Things will be deal with using 'Best Interests' meetings- usually a team of people including family who decide what is best for the PWD.

Reading about your mum reminds me of my MIL - have you tried contacting the Adult Social Services Safeguarding department? - I would tell them that she is a 'vulnerable person at risk of harm due to self neglect' because she is - tell them about the toe nails, not washing etc. Is she eating correctly and taking her medication?

 

[canary]

Hello @sue31

You are going through a horrendous situation, but Id like to reassure you that things can improve.

My mum became totally paranoid while she was still living at home - convinced that everyone was stealing from her, that I was shouting at her and hitting her (although in reality it was the other way around), she wasnt capable of doing anything, wasnt washing or changing her clothes and was living in squalor, although she was convinced that she was still doing everything. She too wouldnt let any carers or doctors etc over the doorstep and most of the time she wouldnt let me in either. I didnt have POA either and it was just awful.

Eventually, she had a TIA and a friend of hers found her on the floor and called an ambulance. Mum went from hospital to a care home and never went back home again. It took mum a couple of months to settle in the care home but she responded to the simple routine and having other people around her all the time, night and day. The care home got her clean and made sure she took her meds regularly. Her fears and anxiety reduced, her paranoia went and her personality (though not her memory) returned. Once she had settled I became her daughter again and her face lit up every time I went to visit. I have good memories of the time when she was there and the awful memories are receding.

If you can get her into a care home, it may happen to you too
xx

 

[sue31]

That’s lovely to read.
It’s horrible to see & sad to say although she’s I’ll and most people sympathise & understand I feel both ashamed of her & guilty for how she is .

I said similar to my husband, it’s going to take a bad turn or harm for her to be hospitalised. Not a pleasant thought but looks like it’s the only way.

 

[sue31]

@sue31 - re Deputyship for health - these are only granted in exceptional circumstances for a specific reason - so don't bother with an application. Things will be deal with using 'Best Interests' meetings- usually a team of people including family who decide what is best for the PWD.

Reading about your mum reminds me of my MIL - have you tried contacting the Adult Social Services Safeguarding department? - I would tell them that she is a 'vulnerable person at risk of harm due to self neglect' because she is - tell them about the toe nails, not washing etc. Is she eating correctly and taking her medication?

Thank you. Already been down that road, not getting anywhere.
Tried getting a lady in to do her feet 3 times & had to send her away - mother wouldn’t let her touch them.
Safeguarding team had conflicting information from somewhere - she didn’t know where, maybe some other persons details 🤦‍♀️All seem to still be “working from home” in our area. No idea why. They did send someone to pop into see her for about 15 minutes & saw how bad it was. Got to wait for them to have a best interest meeting which should have been 10 days ago according to adult mental health, but they can’t arrange a time for them all to be present. Still waiting on a date.
Gp won’t help, won’t visit her or speak to me, think that’s a complaint to report when I have time & energy.
Feel like they are just waiting for “an incident”, an ambulance and will then step in.

 

[canary]

I feel your frustration @sue31

I contacted SS about mum and they phoned her up to ask her what help she needed! Surprise, surprise, she said she didnt need any at all, so they crossed her off their books 🤦‍♀️

Her GP wouldnt talk to me without a Health and Welfare POA and I was just going round in circles. However, there was an incident when mum went for a walk, got lost and ended up at the GPs surgery (it was a converted house and bore a passing resemblance to her childhood home) where she was convinced that she lived and DEMANDED that she be allowed to go to her room upstairs (staff only!). I got called to sort it out and take her home and after that there was no trouble with the GP talking to me!!!!

I recommend that you start looking at care homes. You are going to need a place that is a dedicated dementia home/unit that can deal with "challenging behaviour", probably an EMI home. Dont get blinded by appearances and bells and whistles - look beyond the decor to the actual care