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Please help, need advice - got respite for dm but need permanent

(52 Posts)
ZaZathecat Thu 29-Sep-16 14:44:12

Well things seem to have come to a head and I know I should have forced dm to go into a care home when I had the chance. Now she's got to the stage where she's pulling the emergency cord regularly because she's distressed and wants me (happened in the night once and they had to send the paramedics round because I slept through the phone ringing). Today I got a call from them just an hour after I'd left as she couldn't find the toilet, and I found the kitchen floor flooded for the 3rd time in 2 weeks. She's confused (dementia), has trouble seeing anything and she has fractured pubic bone making her mobility very poor. She has 4 carers a day plus me but still, this is it isn't it?

I have been looking at local homes and the most suitable one has no permanent vacancies at the moment but can do respite for a few weeks - which at least would cover my one week holiday in October. I think I'm going to take it and hope a permanent vacancy comes up there in the meantime.
What if it doesn't though? I will get back from holiday the day before her respite finishes. Please tell me what to do, I'm feeling a bit desperate!

crispandcheesesanwichplease Thu 29-Sep-16 15:37:17

My heart goes out to you OP. Her needs do sound to have gone beyond remaining at home.

This is such a difficult decision and none of us wants to have to make one like this. However she is clearly too vulnerable to stay at home.

Although taking the respite will probably cause your mum some confusion it's only right that you are able to have a break away without the worry of what is happening to her at home.

You need a bit of space and time to think without constantly having to respond to crises.

But yes, sad as it is, I think permanent care is probably the safest option now.

CMOTDibbler Thu 29-Sep-16 15:43:06

Yes, take the respite place, and look at the other places and decide what your preference would be. Would the place she's going to extend the respite placement so you can relax on holiday?

You are doing the right thing - your mum will be safer with 24 hour care

ZaZathecat Thu 29-Sep-16 16:00:00

Thank you both. CMOT, they only have this respite slot available at the moment so she'd have to leave at the end unless either the next person booked in cancels or a permanent room becomes available. I was thinking perhaps I should try to book another respite somewhere else after and maybe another to follow that while waiting for a permanent place.

CMOTDibbler Thu 29-Sep-16 16:25:26

Why not book a slot somewhere else so if gives you a buffer and hope for a permanent place somewhere locally. Get her name on the waiting list for places that you like, and then phone regularly to check the situation so they remember you.

Have you got a laundry pen to mark her clothes?

ZaZathecat Thu 29-Sep-16 16:37:29

That’s what I'll try to do. And I'll add a laundry pen to my shopping list!

whataboutbob Thu 29-Sep-16 19:31:50

Just words of support from me. I bowed to the inevitable with dad back in December, with a heavy heart but now when I visit I have no doubt he is in the right place. Sadly with dementia there comes a point when being at home is no longer manageable unless there's 24 hour care, and that is not an option for most. Sorry you are going through this but she could well be a lot happier once settled in with sensitive care. And your stress levels would go down a lot too.

ZaZathecat Fri 30-Sep-16 08:16:40

Thanks Bob. The respite place is not available until a week and a half's time so I'm hoping she'll hold out until then. Another call from paramedics this morning as she'd pulled the emergency cord because she was confused. They were very kind but I know it can't go on.

ZaZathecat Fri 30-Sep-16 10:49:41

Oh God! Just spoke to the manager of the respite place (who wasn't available yesterday) and am told they can't take dm as their respite room is not in the dementia unit and therefore not suitable.

After panicking for a while I had a phone call from the hospital saying the paramedics have brought dm in and for me to answer some questions about her. She hadn't fallen this time but had pulled the emergency cord because she was confused and afraid. Tbh it was a bit of a relief as the doctor seemed more than convinced that dm is not safe at home and they will likely admit her. I'm hoping that means SS will be motivated to help me now.

Sosidges Fri 30-Sep-16 11:43:16

I do think it is easier to get a dementia sufferer admitted to care after hospital stay than from home. I hope you will forgive me for being blunt, but, as a home won't be readily available, your mum will probably have a longer stay in hospital. In my experience, the longer the stay the more likely that the dementia will worsen. With the best will in the world, nurses cannot give the high level of care needed for a dementia patient. It will be hard to see your mum not getting the complete care she needs in the short term, but it will allow the hospital Scocial Worker and the OT staff to fully assess her. Something that is impossible when the patient is In Her own home. In my experience OT staff are very good at protecting the elderly from being sent home too early.

Sorry you are going through this. My mum spent 5 years in a lovely council homes. Within a few months of being admitted, after 5 weeks in hospital, everyone was remarking how much better and younger she seemed. Regular food, regular medication and stimulation from staff and other residents had an outstanding effect on her.

Needmoresleep Fri 30-Sep-16 12:32:27

Zaza, nothing to add, other than my hope that it will all work out.

CMOTDibbler Fri 30-Sep-16 12:42:52

Oh no Zaza! OTOH, the point at which your mum is in hospital (and therefore Their Problem) is unfortunatly the strongest position you can be in to get social services to find her a bed in a home.

Do not accept any promises of anything they will do when 'your mum is back at home' because it won't happen. Keep repeating that you believe she is not safe at home, you can't care for her at home, and you believe the only place she will be safe is in residential care. Be firm and imagine the MN EP group behind you xx

Sosidges Fri 30-Sep-16 12:45:53

I second that. Do not be afraid to use tears and being at the end of your resources. This is all about getting your mum the best possible outcome from this hospital stay.

thesandwich Fri 30-Sep-16 13:00:13

Oh ZaZa I am so sorry. Adding my support to the EP MN group - cmot is spot on. Do not be fobbed off and they will have to act.
And please don't beat yourself up for not" forcing " her into a home - you could not have done that without major trauma all round- if at all. We just do the best we can which us all we can. You have done so much for so long. flowers take care and you know there is support and wisdom here.

ZaZathecat Fri 30-Sep-16 13:00:49

Thanks for the words of support. You are both right and I will not be accepting any flannel about her being better off at home any more, and I don't think I'll need to make any special effort for the tears if I have to fight!
I guess I've been the only one able to see the full picture up until now and it was easy to be swayed by doctors saying she's better off at home because I knew that to go home was what she wanted. I'm beyond that now though. I honestly think there is absolutely no option but a care home - I just hope she doesn't vegetate in hospital too long before something can be found. I'm encountering long waiting lists in the homes I've tried but I guess they are the most desirable ones.

ZaZathecat Fri 30-Sep-16 13:04:01

Thankyou Sandwich

CotswoldStrife Fri 30-Sep-16 13:06:10

Sorry to hear this, I was coming on to say what Sosidges has already said unfortunately. A hospital admission seems to be the trigger for a few posters.

ZaZathecat Fri 30-Sep-16 13:25:24

Thank you Cotswold

CMOTDibbler Fri 30-Sep-16 18:54:54

Any news from the hospital ZaZa?

ZaZathecat Sat 01-Oct-16 09:19:47

Well she finally got on to a ward late yesterday afternoon, but which time she was much more like her old self and demanding to go home and insisting she wasn't going to stay in hospital or go to a 'home'. She had been on a drip all day for dehydration and also had a UTI as I had suspected. The antibiotics couldn't have worked instantly so I guess it was the dehydration that had caused a lot of her high level confusion.
It was good to see her looking better, but selfishly, I feel a bit let down because now I feel I will have much more of a fight on my hands both with her and Social Services if I want to get her into residential care.

Last night it was too late to see any doctors or OTs and now it's the weekend. Do OTs work on the weekend, or Social Services in hospitals?

Oh one thing I did find out last night, from a nurse, was that dm is very sore in places where she doesn't get cleaned properly. She can't get in a bath or shower at home so she strip-washes with the aid of a carer. Obviously it's not done properly and I can't say I'm surprised as the morning carer is given 45 minutes so get her up, washed, dressed, eat breakfast and take medication (she has to take the meds after she has eaten).
And the dehydration must be because she either forgets to drink what is put in front of her or can't see it. When I'm with her I always have to remind her to drink her tea, and sometimes help her to pick it up. Carers make tea but it's just left in front of her - of course they don't have time to sit and watch her drink it. When I arrives there's nearly always an un-drunk cup on the table - or sometimes a cup on the floor when she's knocked it over.

whataboutbob Sat 01-Oct-16 11:29:39

ZaZa Dad went to a care home from hospital, where he was admitted because his dementia had made a step change and he was no longer manageable at home even with all day care and my brother living . They found the home. It is very difficult for you I realise, because if she does rally round a bit she'll be demanding to go home and coming across better than she usually is at home. That might lead to a capacity assessment and discussions with the discharge co ordinator/ social workers in the hospital about maximum possible care a t home etc. But remember they have a duty to ensure safe discharges.

thesandwich Sat 01-Oct-16 20:48:10

Oh zaza- glad she is better but I hope it doesn't make your challenges harder. It is awful tha she is sore- - - but does that strengthen the case that this arrangement isn't working? Same with dehydration etc?
Stay strong.

CotswoldStrife Sat 01-Oct-16 21:41:11

As thesandwich says, surely the fact that even with a carer she is struggling is an issue? She should have a named nurse so you could check with them if it is possible to speak to the OT/social worker yourself. The OT should assess her before she comes out.

This can't be easy for you either flowers

ZaZathecat Sat 01-Oct-16 21:41:30

There's no one around to speak to until Monday so I'll be trying to gather the strength to make my case! Thanks for the messages, your support is invaluable.

thesandwich Sat 01-Oct-16 22:15:52

Make notes. Be firm- use facts and data. [.Flowers]

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