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Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.
I can say nothing of any comfort or help , just I am thinking of you and hoping you hear soon.
Thanks @Woohoo no place yet. But mum has calmed since the weekend so I am lucky. Had a couple of peaceful nights no wandering
@canary I can only say I agree, its shocking, no one else would get this other than someone with dementia
Palerider, I agree with, this waiting game is ******* appalling, no one should be treated the way some people with dementia or their carers are treated. You shout very loudly to the authorities, rant to them, make a nuisance of yourself until they get their finger out! I would! Sometimes those who shout the loudest get the attention.
Have you contacted your MP? I recently emailed my mums local Councillor about her bin collections ( totally petty compared to your current worries but still taking up my time trying to talk to her very dementia unfriendly council) and it was amazing how quickly we reached a solution with her help.
The current funding situation is a joke, each LA or SS dept seem to operate by different rules and we need a degree to understand it! I know this country cannot afford to pay for the care of everyone who needs it without means testing but there needs to be a universal fairer system which is transparent to all. Those who do have some funds subsidise the LAs by paying higher fees so that care homes can break even with the low rates LAs pay - what is all that about!
My mum will be self funding when the times comes to consider residential care but for how long before her money runs out? I have a friend in that situation right now, her mum has paid for her own care for nine years but now the money has run out. She approached the LA six months ago but is still waiting to be told where her mum can live - her current care home will not accept the amount that the LA will pay so without top ups from my friend ( not possible) a move is on the cards. In the meantime, there are three months of outstanding fees and this really upsets my friend.
Grrrr, sorry for going on but it makes me so cross when I see people like you Palerider and my friend struggling against incompetent gvt departments. I hope things get sorted out soon, what would happen if you have a breakdown with the stress and could not be there for your mum? And it's not fair on your mum either.
Hopefully you will hear something very soon so that you can get your life back. Take care and remember, sone of us on here are not too far from you if you fancy another lunch meeting.
glad to hear mum is calmer , and you have had some peaceful nights , fingers crossed it continues . Wishing you continued strength. X
I am very stressed at the moment and have reached the point I just want this all to stop, I can't describe how I feel right now. Its bad enough dealing with the guilt trip of placing mum into respite and then on top of that waiting and waiting not being able to do anything until that step has been taken. If she hadn't become so agitated and started wandering I would say forget the whole thing and we'll carry on, but that isn't workable anymore as things are now.
Its intense at the moment, and I can't sit in peace for five mins to collect my thoughts and resolve some of the guilt I feel at what needs to happen now. Mum is constant non-stop, and that is now hard going, she wasn't like this a few weeks ago, so its a big change.
I think a lunch and chat would be great, but when this is sorted. I wouldn't be able to leave mum alone now. I have my nieces wedding next week and I don't know how I am going to attend if mum is still here, as she cannot be left alone
So sorry to hear nothing has progressed yet but glad to hear that your Mum has calmed
That's a plan then, once your mum is in a safe place, I'll arrange a Meetup and you can vent as much as you like! Or we can talk about other lovely things such as holidays, cooking, music and books. And I'll bake a cake!
Just remember, you will get through the stressful situation, there is a life when all this is over and you deserve a happy one. In the meantime, keep fighting the system in the loudest way you can, get your voice heard.
I hope things are a little better today.
Thanks @Bikerbeth, I'm glad too that she is calmer at the moment, fingers crossed she remains calm
Thanks Anne, its hard to realise life does go on when in a situation like this.
Its hard going, still haven't heard anything and its now Friday. I am beginning to give up on this plan now as I am the only person that seems to be stressing. The SS haven't even called me to update me, I have to chase them and my brother hasn't been near all week, nor offered help, despite saying he would come and visit at least.
What is the point?? I should have stayed at work, and allowed this situation to reach crisis point
Oh my lovely my heart goes out to you. The unfairness of the situation ... no words can express it. Only other option open to you is when your poor Mums next agitation period happens call 999 or 111! 999 will get a quicker response but I know myself that’s a hard choice to make
the system is broken beyond belief, the franchising of care has led to this situation & we are left to struggle on.
I had to walk away from Mums care & let crisis after crisis happen. Horrid experience!
Bless her and all the great grandparents, grandparents, mums, dads, husbands, wives, sisters, brothers, children, friends, acquaintances neighbours - everyone we know, don’t know and are yet to meet. We care, worry and howl in the night when no one can hear. Try and keep going dear friends, it’s tough, so very tough, but we are strong and have to keep going for the weak and weakened. Hopefully inner strength will come. At the end of the day it can happen to any one of us - there but for the grace of God. As charge nurse said yesterday ‘ I hope my wife would fight as hard for me as you have for your husband’. Don’t give up, keep fighting, at the end if the day they only have us. My love and prayers xx
It must seem that way . I think you have done your very best for your lovely mum and even this plan that you have started to try and get in place is the best for her too as you have tried to head off a crisis and save her any unnecessary stress. Hang in there , hopefully won’t be much longer fingers crossed . Not a shock about your brother , is he burying his head in the sand or always been this way ? My sibling is much the same .
sometimes I’m really grateful I’m an only child!!
I sometimes wished I was I get no help just criticism , that is more to do with their own failings I feel .
I feel your frustration @Palerider . I had the same problems with SS last year when I was trying to get care sorted out for my dad. They seem to have no sense of urgency.
In his case it did end up as a crisis...
It’s easier for some to pass criticism than step forward. Yes that’s there failings, I have tried ignoring it & rising above it ...grrrrr......is the best description I have to express the emotion that brings!
I even tried - well if you can do better then please feel free to..........yes then the excuses flow !!!!
so I now say very bluntly - it’s easy for you to say but you aren’t willing to put your words into practice! I then hold my hand up & say no please no excuses, if you can’t support me then don’t comment!
yep it’s a sure way of leaving that annoying opinionated person with an open mouth ...but I recommend running shoes for a hasty retreat!
All very good responses . Unfortunately situation deteriorated so I no longer have any contact . Would like to say that it’s easier now but it’s not, hey ho on we go.