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Coping with additional needs in family

2 replies

notagadoo · 16/03/2020 05:59

How do you ? I am a full time carer to two relatives and have a third in full time residential care . One has severe MH issues that require round the clock care, the other is very elderly and the other has severe autism and learning difficulties (in residential).

I’ve accepted that if relative with MH difficulties has a crisis/meltdown I’m not going to be able to get any help whatsoever , but that does mean she should be confined to the house? She takes non epileptic seizures which frequently requires an ambulance as she often takes them when outdoors - in the road, for some reason just now - and I’m not sure how to handle that . I can’t lift her when she goes down (literally) . If she’s outdoors countless people stop to help and clearly that’s not good now . She’s also asthmatic . So should she just stay at home - indefinitely ? How long before her mental health goes down the drain altogether ? Have been told all her services - community mental health team, multiple consultants and psychiatry etc - will be stopped completely .

Relative with autism - carers are doing their best but she’s phoning me round the clock, told all her services have stopped until probably September time and she’s now indoors in a very small flat, no garden with no real windows that they can open . Flatmate has Down’s syndrome and is also struggling as she now has nothing too - just the TV . They have upwards of 25 different carers a week but not sure how long that will last - and they’re both very, very short of food as no real storage space . Carers are trying to make light of it by telling them it’s an adventure and making disinfecting the house fun, ‘letting them have cake for tea etc and singing Disney songs ... said they will try to get them some basic food but said if worst comes to the worst they’ll be reliant on goodwill from local groups set up to give elderly/disabled food packs .

Elderly relative - has a jam packed freezer and I’ve changed her bed last week so she’s sorted for a month there . Can do most things but not all by a long shot . Very breathless already and reliant on GTN etc - CHD . I’ve tried to tell her she can’t go out but she’s determined she needs the papers and to go to Mass . She will also run out food within the fortnight . Rang me and asked me to buy her various foods which I’m happy to try to do - I’ve booked delivery slots as far as I possibly can into the future and will check that situation on a daily basis, but I don’t know if that will work. Have ordered a Tesco delivery today and honestly not expecting to get a single thing . If that happens week after week we will starve, very quickly .

Wider family are very much ‘I’m alright Jack’ and haven’t said much . Did phone me to ask me to take responsibility for sorting everyone - including food shopping, pharmacy runs and trying to coordinate everyone’s care - but I’m struggling already without COVID19 as this is my usual life, I’m used to being a carer - except now I can’t really help any of them - I’m living with one, but the other two (elderly and autism) I’m not and I’m not sure how I can sort things . I’m spending 90% of the day trying to calm everyone down .

At the back of my mind as well 2 out of three are fully reliant on benefits as am I right now and I’m guessing that they won’t last much longer either - I would have thought if the economy goes then surely disability benefits and pensions will be the first to disappear . And then what?

It sounds awful but I’m feeling totally desperate and worried that one way or another we won’t be here for much longer . What do I do ?

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sleepismysuperpower1 · 16/03/2020 17:20

could you check with your local church, and see if they have a list of people who may require any extra help during the coming weeks, and put your elderly relative down on the list? that way she can receive help with shopping/cleaning etc so whilst you can still help her, you would at least have the knowledge that she is looked after food wise. you could also try and set up a newspaper subscription for her, deliver my newspaper does it and whilst you do have to go to the local shop to set it up, once it is done the paper comes straight to the house so would be one less reason for her to leave the house.

do you have a garden? if so, i would try and keep your relative that lives with you at home as much as possible. she can still go outside, maybe do some gardening? but that way if she has a seizure there aren't so many people and its in a safe environment. is there any way the MH team could organise video call sessions, via skype or some other media?

with your relative in residential care, do the careers have any suggestions? are there any parks close by that they could possibly walk her and her flatmate to, so that they aren't stuck inside 24/7? if not, could you possibly send things over such as a jigsaw or a cd player, to try and give them something else to do aside from tv? if you find a church list, perhaps you could put their names down too so that they can receive food shopping (is there any storage room under beds etc)?

i don't know much about the benefits side, sorry.

all the best x

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sleepismysuperpower1 · 16/03/2020 17:21

oh, and if by pharmacy runs you mean prescriptions you can get them delivered by signing up online x

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