Hi everyone

[JLB1989]

Hi everyone,

I have been reading through the forums for a long time, usually when a new problem arises but nothing is fixing the current situation.

I am employed via the direct payments scheme to look after my gran that has vascular dementia 10 hours a week - she lives next door and my grandad who has Parkinson’s disease also lives there - think he could possibly be getting dementia - he has no care package what so ever.

The agreement was that the 10 hours a week were to do all the house work, laundry, ironing, changing the bed, dusting, hoovering, ordering the online food shop, making light snacks, check medication was taken etc this was all that was needed 18 months ago. Now things are very different my gran no longer has any memory of anything, no present and no past. She no longer can remember to wash, change clothing or anything and also refuses to because she is washed and cleaned as far as she is concerned so this is how she lives in dirty clothing including underwear usually worn for months at a time so I’m very concerned about the infections she could get. No teeth get brushed, no hair gets brushed, have no idea if she uses the toilet ok as I never ever witness her needing to go to the toilet and the only time I hear her flush the toilet is when she’s trying to flush chocolate wrappers down it! My grandad is of no help in all of this - he is just as dirty, hasn’t showered in I wouldn’t like to know how long, years!! All be it he does remember to change his pants but that’s as far as his cleanliness goes! Neither of them eat unless given food which thankfully my mum does every evening after working a full time job every day! Probably not what she wants to realistically be doing when she doesn’t get home herself until 6.30pm! I have of course attempted to give them food myself but my grandad will always say they have eaten if I offer but the fact is he just wants the food my mum will cook when she gets home from work! Although I feel with no life of her own this will eventually become draining!
I try to go in every day and get everything I need to done in there but I agitate my gran so much trying to do anything that I find myself waiting for the one day she is in day care so no day off for me!
A social worker did come out this week and because my grandad was saying how much help he feels he needs she was offering lots of help but he kept saying no because neither him or my gran want anyone in to help them. Then she said she wanted to come back for a carers assessment with out my grandparents around. I’m assuming this is because she can clearly see there’s a problem and probably can smell it too!!
They are adamant to have no care and help and think me and my mum are able to do it all but where does it stop! Is it time for more help? Am I being too forceful? Other family members think it’s ok to just leave them dirty if they are happy. Is this the normal thing to do?
I’m struggling financially as you can imagine and at 28 I’d like to have a social life but I’m also the baddy to all family members because I won’t just shut up and do everything

Sorry for the long winded post!!

 

[karaokePete]

Welcome as a new member to TP, even if you have been reading the forum for a while.

It is a tough situation that has brought you here but my reading of the situation is that it is no longer a matter of 'want' but of 'need'. If you are already employed as a carer can you contact your Local Authority Adult Services for a reassessment of needs? That would be my first port of call.
I have no doubt that others with more experience that me will be along to advise you further. I wish you luck in the meantime.

Don't worry about pressure from family members they may be happy to sneer from the side lines as long as you continue to do everything. Keep posting.

 

[JLB1989]

Welcome as a new member to TP, even if you have been reading the forum for a while.

It is a tough situation that has brought you here but my reading of the situation is that it is no longer a matter of 'want' but of 'need'. If you are already employed as a carer can you contact your Local Authority Adult Services for a reassessment of needs? That would be my first port of call.
I have no doubt that others with more experience that me will be along to advise you further. I wish you luck in the meantime.

Don't worry about pressure from family members they may be happy to sneer from the side lines as long as you continue to do everything. Keep posting.

Thank you.

As far as I know the social worker does want a reassessment of needs done for them but with so much refusal from my grandad especially she felt a bit stuck in a rut. I also said to her that I wouldn’t want my hours to go any higher than 10 a week as I could never look after 2 elderly sick people on my own anyway, I couldn’t possibly bath either of them myself, they are both much heavier than I am so in terms of personal care it’s just not possible for me to do it alone.

Yes it’s amazing how much outsiders think they completely understand the situation and how they could do so much better.

 

[karaokePete]

I think that you should use terms like ‘vulnerable adults’ and ‘duty of care’ (theirs, not yours) to get SS to listen. It is their duty of care not yours and it isn’t really a matter of whether they want to do a reassessment or not, they have a duty. If they discuss the issues with you maybe a mutually agreeable arrangement can be put in place.

I don’t have any experience of this myself but I have little doubt someone who has had these problems in the past will be along to advise. Hang in there.

 

[geomack]

My wife remembers to change and attach panty liners but would never take a shower, or a bath or wash her hair unless I managed to cajole her into it which is difficult as she sees it as a personal intrusion and me as a bully or control freak. If I can get her into the shower I can whip around and put her out clean pants, bra ,and top and take the old ones to the washing machine and she wont even notice. Getting her to change her panties is still a problem as she keeps them on until she is about to step into the shower and puts them right back on when she gets out. I give her clean ones to take in but by the time she's had her shower she's forgotten about them. I have put a stack of clean undies on the shelf beside the panty liners hoping she will make the connection but no success yet.

 

[Lindy50]

Hi @JLB1989 and welcome to TP

It sounds to me very likely that the social worker is actually doing a needs reassessment, otherwise I don't know why she'd be making a follow up visit for the carers assessment? This will be an assessment of needs, not what your grandparents want, although their and your views will be recorded.....and they can't be forced to have their needs met, unless they are deemed to have lost mental capacity, ie are no longer able to make decisions for themselves. Assuming that the social worker has some experience, I think they really must be considering these issues.

I'd suggest that you contact the social worker and ask whether a needs assessment is being done - if it isn't, ask for one. Also make it clear that you can't do more than 10 hours a week, and also can't undertake certain tasks like bathing. You may find that the social worker suggests agency care for at least some of the necessary tasks, so be prepared for that and talk it through with your mum.

Also, can I ask.....do you actually want to continue with this responsibility? It seems that it's taking up a lot of your life, and at 28 it may not be the best thing for you. Think it through.....if you want to be employed somewhere else, or have more of a social life, you have every right to these things. Now is your chance to speak up, while a social worker is actively involved.

I wish you all the best of luck with this situation. Do keep posting, people on here will want to support you.

Lindy xx