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New and struggling - Carers UK Forum

New and struggling

Tell us a bit about yourself here.
Hi all,

Really not sure where to start. I'm 35 years old and still live at home with my 75 year old mum, 84 year old step-father and 47 year old sister.

Myself, mum and sister (to some extent) care for my step-father who has what we think is the beginning of dementia. He won't speak to a doctor to get this checked. He shakes very badly and can be very nasty when you try to help him. He also has type 1 diabetes and doesn't look after himself properly, leading to many hypos. Including whilst driving or having assisted falls and ambulance call outs whilst at the shops. Majority of the time they are in the middle of the night when I hear him pottering about on the landing trying to go to the toilet on the stairs or just having accidents. He also has quite a stoop, weak legs and trouble walking.

We have managed to get him to allow us to sort out a POA but he refuses to have it given to banks etc. It just sits signed in a box gathering dust.

After suggesting a trolley to assist with walking he berated us but bought one a few months later. Same with a trolley for in the house.

We've had to tidy up the house, the loft was full of rubbish and the floorboards were giving in. We had enough books to stock every library around us, but he never reads. We were told we took his soul away - that's the thanks we got.

I have never really got on with him, he was hard to tolerate before he aged suddenly, but he is even more intolerable. We have numerous arguments and to be quite honest I would rather stay off the same floor of the house as him.

If it isn't him having a hypo, being angry, swearing and slamming things or him rolling over my feet with his trolley it's something else and we are sick to the back teeth of it. I think and voice some really nasty comments, being childish really, but it's the only way to vent some frustration.

I've never moved out, unlike my sister's, but am moving out in a few months and feel guilty leaving my mum looking after him. She is 75 herself and although reasonably healthy, she is tired easily and I think mainly tired of him. My sister is on benefits, barely helps, sleeps all day and claims she can't do anything. How can I just leave and expect my mum to be ok? He will be the death of her. He is draining the life out of all of us.

I will be living over an hour away, another sister lives 40 mins away but doesn't see the problem and his soon lives the other end of the country and just laughs at what we have to put up with.

Sorry for the essay, I just needed to write this down before it consumes me. The hatred/resentment I feel towards him is sometimes just unbearable. I feel silly even posting this when others are suffering more.
Hi Claire, welcome to the forum. You have had to endure a horrible situation for a long time. I can understand your concerns about leaving your mum to cope with your step-father. But it was your mum's choice to have him move in with her and her daughters. It was not your decision. It is natural for you to leave home and to find your own place. Your mum is lucky to have had you at home with her all these past years. Things are going to get more difficult as his illness progresses. Once you've moved out it's possible that your sister will change and help your mum. But whatever happens you deserve your freedom. I'm sure others will agree with me.
Hi Claire
This may sound odd but get your Mum to change her will not to leave anything to step-Dad. It's not being mean, but as he will be needing care soonish, if, heaven forbid, she should sadly die before him, than all her money will go to paying his care. If she leaves it to,you it won't go to subsidise the Council (who will pay for him after his money runs out)

It's not ghoulish, just practical.

Kr
MrsA
Hi Claire,
Welcome to the forum. You will find a lot of support here.
You say that "he shakes a lot" and appears to be getting dementia. I'm not a medical person, but do know that shaking is a sign of Parkinson's Disease, and that can lead to something called Lewy Bodies dementia.
Mum is in a very difficult position, perhaps if you could investigate a bit about Parkinsons, she could have a conversation with the doctor. Whilst "patient confidentiality" means he can't tell her anything about his own medical situation, the doctor can listen and perhaps do a home visit on the pretext of "checking up on our senior patients we haven't seen for a while".
He should NOT BE DRIVING! Discuss this with the doctor too, and maybe tell the DVLA.
Clair, who owns the house your mum and stepdad live in? Do they rent or own?

If they own, then half the value has to be used to pay for your stepdad to be in a care home (where I suspect he will 'end up' as he worsens).

However, I wonder if the best thing would be for your mum to divorce him! How does she feel about him? I know it was 'her choice' to end up with him, but many women, alas, ended up with 'bad choices' and then felt obliged to stick with them....

Perssonally, I would say the 'ideal' solution would either for your stepdad to be moved into a care home (I think the council will pay his fees till he dies, then reclaim it off the value of the house)(if they don't own where they live it is much simpler, and the council will pay if he doesn't have more than £23500 in the bank - that's HIS money, not any he has jointly with you mum - ie, they can BOTH have up to £46k in the bank and not pay for residential care for either of them).

Do you think there is any chance your mum would leave him, and let the council 'take over'?

Is there any chance your mum would move WITH YOU, and leave behind her 7unpleasantuseless husband and even more useless elder daughter to shift for themselves??

I suspect, alas, your mum will stick by him, and her useless other daughter, and there will be nothing yo ucan do about it. In that sad event you just have to look after yourself, and be 'on hand' to help as and when your mum has finally 'had enough'.....

UI
PS - Others here will know better than I, but if he has signed the PoA, aren't you entitled to use it 'anyway' and simply access his accounts etc? At some point he will lose 'legal capacity' and then you will HAVE to administer his affairs, he won't have a choice any longer.