I am at breaking point + capacity assessment

[Rach5164]

Hi,
My Dad (74) was diagnosed with vascular dementia just under a year ago. It has been going on for years and I finally managed to get him to agree to be tested. Over the past 3 months or so, he has rapidly declined.

He lives alone (my mum died 3 years ago) and about 40 minutes away from me. I am only 37, an only child and I have a 5 year old - we are looking to expand our family as soon as possible really (before I get any older!) . I have an extremely stressful job as an executive assistant for a global corporate. He has carers in the morning and evening but is spending about 7 hours alone in the day and around 12 hours from when the carer leaves at night, until the one comes in the morning. Just setting the scene here for you!

He cannot toilet by himself . Wees or poos all over the bathroom floor. If there isn’t a carer there he calls me and naturally I drop everything and travel over there to clear him and the house up. He is wearing Tena but left to his own devices , he might as well not bother! I was recently on the school run and he rang me to say he had done a poo everywhere . I had to get my 5 year old to school and I had a meeting at 10am which I had to cancel . In rush hour it took me an hour to get there. This happens all the time , including last night. I am absolutely exhausted.

I had to move in with him 2 weeks ago for a week because he had covid and a UTI. It was absolute hell. He sundowns really badly and for a week I was up every hour in the night trying to calm him and get him back to bed.

Me constantly dashing away is now affecting my daughter and she is extremely clingy with me and won’t let me leave. She was so upset when I was away for a week. All of this is taking me away from my husband and daughter. Also, how the hell could I possibly get pregnant and deal with all of this?

He also no longer recognises rooms in his house, doesn’t know where to get a drink (so the carers leave water everywhere) . At night he doesn’t know where his bedroom is or where his bed is .

I am at my absolute wits end and in a constant state of anxiety and worry. This is no life for either of us.

I have found him a wonderful new home in a care home that has opened literally a 3 minute drive from me. I did the assessment on his behalf and he passed. However, he refuses to move and says he is absolutely fine. Pooing on the bathroom floor is just old age apparently. The GP will have no involvement ( spoke to 3 different ones) and said I just need to call social services for a needs and capacity assessment. If no capacity is found then I think next step is a best interest order or something like that.

Has anyone here been through this process. How long does it take from start to finish? I am
So worried the home near me is going to become full if this all takes so long.

Thank you!

 

[thistlejak]

The needs and capacity assessment can take a while so I would get onto Social Services first thing tomorrow morning. There are a number of phrases that appear to get their attention - ' vulnerable adult, at risk of harm, I have reached carer breakdown'
Another thing I would do is increase his carer visits - that should give you a bit of breathing space while waiting for Social Services. Your daughter needs you and her needs should be met before your Dad's - she is only little and , while she will understand some of what is going on ( possibly more than you realise if our 5 year old grandson is anything to go by ) , she won't understand it all.
MIL has vascular dementia and was deemed to have 'fluctuating capacity' - in my opinion the biggest cop out social services uses - and we had to wait until crisis point was reached before we could get her into care against her will, it was 8 months after social services got involved before the crisis came.
You say that he 'passed' the assessment you did on his behalf - has the care home actually seen him and do they have any idea what his needs are? I only ask that because when we were looking for a care home for MIL 2 of them wouldn't have her. Will the home put him on a waiting list while you get things sorted?
Sorry to paint a fairly bleak picture but , in our experience, it is not a quick process.

 

[Starting on a journey]

Maybe it’s time to be less available, try and increase carer calls and if there is an incident get the carers to clean up(obviously he will have to pay assuming he is self funding) .

Like others have said use the magic words, carer burnout and advise you are putting child first…..quite reasonably. Your dad would be better in a home so you could visit and enjoy rather than scraping poo off the floor. For many of us that’s our line in the sand.

 

[Jayne1962]

Hi Rach5 164
I had a very similar situation with my dad there was no way I could have moved in with him and to be honest I couldn’t do it -I like you was called upon at every minute of the day or night -it came to him trying to get out in the night -fortunately he couldn’t get the key to open the door
He had several falls and had to go to hospital and was a danger to himself.
I had a discussion with him saying I couldn’t cope and he needed care 24 hrs and he agreed.I chose a care home urgently as social services couldn’t offer immediate help-he had to self fund so I was able to get him straight in since then we have applied for financial assessment and have been assured that any over payments will be refunded
Our GP was no help either
We had applied previously for a power of attorney (which you should do ) then you will be in control of his finances and health and welfare (go on line to apply)
If you or he has the finances -for your and your families health and sanity get him there as soon as possible-you could tell him you can’t carry on and it’s like a holiday for him
Although you will feel a major guilt trip you have the rest of your life to live and truthfully I’m sure he wouldn’t want you to be upset and it affecting your own life
Good luck x

 

[Rach5164]

Thanks to everyone who has replied.

Dad was deemed to not have capacity, as I thought. I took him to see the care home last week (at his request). It was a total disaster- he hated it. But let me tell you , this home is absolutely gorgeous, like a 5 star hotel, brand new and literally a 2 minute drive from my house. It couldn’t be any more perfect. His existing carers still want to visit him and I think this will be great, so he will be taken out 3 times a week, plus seeing me and my daughter more & going out with us too.

He is now having toilet ? accidents at least 5 times a week and I cannot cope - he walks it all
Over the house!

He will be going in the home on 29 August but he still says he isn’t. I know I’m doing the right thing. To leave him rolling around in his own poo would be neglect. He is also so so confused and terrified alone at night. But like you say Jayne, I feel tremendous guilt. He has lived in our family home for 37 years and I feel absolutely dreadful . I think in the home he may settle eventually but the first few months I think will be awful and he is going to hate me for doing it to him.

Gosh, this caring game is so so heartbreaking ?

 

[Izzy]

I’m glad you’ve found somewhere suitable. Everything crossed for 29th. ?

 

[Rach5164]

Thank you ❤️

 

[canary]

Im afraid your experience of someone with dementia agreeing in principle to moving to a care home, but then when faced with the reality absolutely refuse, is typical of dementia. It doesnt matter how lovely it is, the default response is typically "no"

Im sure you are making the right decision and I hope all goes well.
xx

 

[Jayne1962]

Thanks to everyone who has replied.

Dad was deemed to not have capacity, as I thought. I took him to see the care home last week (at his request). It was a total disaster- he hated it. But let me tell you , this home is absolutely gorgeous, like a 5 star hotel, brand new and literally a 2 minute drive from my house. It couldn’t be any more perfect. His existing carers still want to visit him and I think this will be great, so he will be taken out 3 times a week, plus seeing me and my daughter more & going out with us too.

He is now having toilet ? accidents at least 5 times a week and I cannot cope - he walks it all
Over the house!

He will be going in the home on 29 August but he still says he isn’t. I know I’m doing the right thing. To leave him rolling around in his own poo would be neglect. He is also so so confused and terrified alone at night. But like you say Jayne, I feel tremendous guilt. He has lived in our family home for 37 years and I feel absolutely dreadful . I think in the home he may settle eventually but the first few months I think will be awful and he is going to hate me for doing it to him.

Gosh, this caring game is so so heartbreaking ?

Your definitely doing what’s got to be done my dad told people he hated it but he’s settled in well and I think realises he hasn’t got a choice-it will get easier for you -it’s best to try not to dwell on how long he’d lived there and he’s never coming back -it’s just upsetting for you -I know my dad had live there for 75 years -just give it time you can relax more knowing he’s cared for and you can be just his daughter not his carer xxx