Feeling Distraught

I’m not new and some of you may remember me I joined whilst I was caring for my Dad post stroke in 2003 we lost him in 2013 but sadly during his period at home Mum was diagnosed with Vascular Dementia (2007)…it hasn’t been at all easy as Mum can be quite stroppy at times but we’ve managed to muddle through with her still living independent and me going every single day. However, she has had some sort of virus that has knocked her dementia for six and after three weeks of constant pressure I finally cracked and called the crisis team yesterday. I was an absolute blubbering idiot and they are sending someone out at 2pm today and I’m really scared anyone got any advice I just feel so helpless and unable to think at the moment Love J x

(((HUGS))) J.

You have always done your very best for mum, but clearly something is happening to mum that means at the moment, she needs full time care.
It sounds like you have become what I call a “Clapped Out Carer”, you have given your all, done your very best for TOO long, so there is nothing left. The time has come for mum to have full time care.

You haven’t failed, mum’s needs have increased to the point where she needs a TEAM of carers. I suspect when she goes somewhere, they will be amazed that you coped with her for so long.

Pack a bag for mum with toiletries, nightdress, slippers etc. Be sure to name them. Tell the Crisis Team that you CANNOT DO THIS ANY MORE. Your own health is top priority now. Be kind to yourself.
I’ve been in the same situation as you, it’s horrible, but the situation is not your fault and there is nothing to blame yourself for, or feel guilty about. It’s not just mum getting older, but you too. I used to have endless energy, but now I just about get through the day and have an early night, or go to bed and watch TV. Caring for my son with LD for just a few days is utterly exhausting.

Has she been checked for a urine infection?

My m-i-l was prone to them and always got decidedly weird when she had one, I could diagnose them with 100% certainty over the phone.

I’m glad you were a ‘blubbering idiot’ on the phone, as that shows how ‘desperate’ you are. As BB says, for now, you’ve reached the end of the line and Can Do No More.

Ideally, respite for your mum (at the least) would be a good idea, but that is probably hard to find this close to Christmas, and they won’t want to have her in hospital either, if they can help it (they are chucking folk out at the moment, to clear the beds for the holiday period)

As BB also says, this may be more than a ‘temporary collapse’ for you, it may signal that thing have to change completely in the way your mum is looked after.

In that respect, what is her financial situation? Does she own her own home, has she savings of over £23,500? That will determine how much ‘free’ help she can get, or if she has to pay for it herself.

The time has come - as it does, grimly, for ALL dementia patients as they worsen - to think about her NEEDS, not what either you, or she, may want…

Her needs, now, may have gone beyond your ability to care, or her ability to ‘muddle on’ any longer. Sad, but there it is. If ‘something else’ does not happen (eg, heart attack, stroke), then dementia will, grimly, simply at some stage ‘close her down’. My poor late MIL ended being bed-bound, doubly incontinent, and unable to speak or recognise anyone. Finally her brain just shut down what was left of her poor, poor body and mind. She died peacefully, thankfully, but in a care home - nothing else was possible.

Thank you all for your replies as ever I am so grateful …We had a lovely Social Worker come out this afternoon and of course Mum said point blank “NO THANK YOU” to " a temporary stay in a convalescence home" lovely way the lady put it to her… and although she said she can clearly see that Mums dementia is bad she has enough capacity to say no… so she said well in that case Im going to tell you and I’m not sure you understand fully but I am putting your dear Daughter at risk …she is nearing a full on nervous breakdown and I am going to insist along with her Doctor that she is to have complete bed rest for 2 weeks and if you still refuse a lovely stay in a lovely little nursing place then you will have to rely on care coming in to your home to allow your daughter to get better … Mum said I’m not going anywhere they will have to come here then and then promptly went back off to sleep.

She then concentrated on me she told me that no one can be safeguarded 24/7 even in care homes so with 4 care calls going in Mum was obviously going to be at slightly more risk but she probably would be in a care home but at least she would be regularly checked on and I must use this opportunity to take a step back …said she couldn’t force me not to go but she sincerely hoped I was taking it all on board.

I think basically what they’re trying to do is force a crisis so that Mum doesn’t have a say in it told me they were more concerned about me than Mum …Day at a time folks lets see how it goes right at this very moment I’m completely numb could be on this earth or fullers earth no quite sure but once again thank you all…Mum is self funding by the way has no savings but does get attendance allowance and owns her own home.

Carers start tomorrow morning so I will be there for the first one cos they wont be able to get in Dads key safe has broken so shes ordered a new one xxxxxx

She is NOT self funding UNTIL she moves into a home permanently. How old are you??

I knew you’d be able to help BB…Social Worker said that because she own her home she would have to pay for care out of her AA but we have a finance guy coming after Christmas to sort all that out …first few weeks are free apparently…I was 61 in September xx

Are you living in your mum’s home? If so, at 61 yourself you MAY be able to go on living in it, and it won’t be taken into consideration for her fees.

BUT, on the other hand, I suspect the reason the SW is being so lovely to you (and I’m SOOOOO glad she is!), is doubtless influenced by knowing that moving your mum into residential care won’t cost the council!!

SO, my advice is to definitely check out your ‘rights’ (great you’ve got a financial adviser, but also make use of the excellent set of experts here - forum members AND the ‘officials’ at CUK - email them for an authoritative answer), because you may have to play a ‘cunning game’ with SS if you ARE entitled to stay on in the house and it NOT being sold to pay her fees.

If you ‘time’ it right you can get the SW ‘on your side’ (as she is - hurrah for now) to get your mum INTO care (if that initial period is paid for by SS anyway - no skin off SW’s back long term) but then once she is there and becomes ‘long term’ resident, THEN you play the ‘Oh, I’m 61 so I don’t have to sell her house to pay for care because I live in it!’…

As I say, DO get truly expert and authoratitive info here, as you may launch a battle royal with SS/council otherwise? (ie, they will love you if your mum is self-funding, and hate you if THEY have to pay).

All that said, thank GOODNESS the SW sees how collapsed you are - Mum really ‘hasn’t a clue’ any more, and it could well be that a DOLS (Deprivation of Liberty) is ‘put’ on her and she is moved into a care home whether she wants to or not.

So gla the SW spelt out that YOU are going ‘off sick’ and your mum either puts up with you NOT being ‘on hand’ OR she agrees to have at the least respite care (until she is fully residential)(don’t tell her that)!

No Jenny don’t live with Mum but feel as though I might as well do at the moment xx

In that case, then retreat to home and let the carers take over.
First though, remove any valuables from mum’s house, and lock any internal doors to rooms the carers don’t need access to. Does mum have a Key Safe so that they can get in and out without you?

Prudent advice. Can your mum still manage phoning you? if so, put it to answerphone and only phone back if it’s an ‘essential’ call. Not just a ‘COME HERE RIGHT NOW!’ call!!!

Yes there is a keysafe and I haven’t left any valuables at Mums for years… carers came this morning to sort all the paperwork and details and I have been TOLD by my family that I must recharge my batteries and leave them to it…did have the doctor visit today after telling them i wasn’t happy with their previous diagnosis…had Mums actual Doctor and not a locum and she was horrified that no one had instigated a dip urine test …Mum did a wee doctor dipped and it was bright red…now a course of anti b’s specifically for UTI…carers weren’t phased at all said it was really common I’m now at home trying to sort our own house for Christmas but I’m not sure how I feel 18 years is a long time and it will take some getting used to …Mum is really not happy !!! but hey oh I feel really drained xxxxxx

You’ve sacrificed 18 years to your mum. Time she started repaying that.

Tough if she’s not happy. Just tough.

YOU come first for a change.

Day 1:
Stay in bed till late, long bath, lovely smellies, recliner, good book. Meal in the local garden centre. Lazy evening, early night.


Oh how I love you guys I don’t post much but I very often pop on for reassurance and you certainly give it …thank you ladies xxxxx

We help to ‘show the way’ and reassure you that you do NOT have to be the perpetual victim here.

Standing up for ourselves is hard - it helps if you’ve got other folk (eg,. us!) pushing you upwards!!!

PLEASE recharge your batteries. I also came here in a desperate mess. Dad is now in a care home and Mum has carers in. Neither like it. But it is what is NEEDED for my sister and I to have some sort of normal life. 18months on life is much better. I have a job I love. I am no longer depressed. I am being a better mother to my kids. Someone on here (prob BB or Jenny??!) said be proud of what you have done and can do and not guilty about what you can’t. Sounds as though you have been doing a mighty amazing job. Hold your head high and enjoy some time off from it all totally guilt free.

Happy Christmas. xx