Not getting out of bed all day: My daughter in... - Mencap

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Not getting out of bed all day

agiuga profile image
agiuga

My daughter in supported living will only get up when a particular more experienced carer is on duty. So 4 days of the week she refuses to get up. The organisation who cares for her keep coming up with plans but nothing changes and no plan lasts more than a week. The other young staff don't seem to be able to motivate her to get up. I have made suggestions "Let's go on a cat hunt etc" , but the staff don't seem to get through to her. I am really concerned for her health. She has had a bed sore recently.

She is under the care of a psychiatrist and learning support team from the County but months on nothing is changing. She lives about an hour and a half away from me. Not sure what to do next if anyone has had similar experiences and can offer advice.

11 Replies

I would speak to the cqc and I would speak to Mencap helpline and who ever the funders are to ask for an urgent review and make it formal.

agiuga profile image
agiuga in reply to Jofisher

Thank you. I will certainly do that

Ask manager or experienced staff to train them in waking her up and doing chores and activities

The experienced carer did have a chart with the other carers about what to do as she is on holiday for the next two weeks. I think I will have to keep them accountable and ring up to check every other day say.

Hello agiuga I am sorry to hear about your daughter. It is so difficult when you are so far from her. My friend's 32 year old daughter sometimes chooses to stay in bed all day, particularly if there's a carer she feels less comfortable with. It would be helpful to know what it is that gets your daughter up with the experienced carer. Is it confidence and trust in their relationship? I agree that it might help to make a clear plan, drawn up with the involvement of the experienced carer?

My son 31 who is autistic is similar. He also lives in supported accommodation. He gets up in the mornings has breakfast and then goes back to bed until late afternoon when he usually gets up for a few hours but sometimes doesn’t get up at all. I think the pandemic and lack of social opportunities has made him less motivated too. Could this be the case with your daughter?

The staff where my son lives also try hard to get him up but it’s challenging. Is your daughters mobility an issue? I only ask because you mentioned pressure sores - that’s a bigger issue if she’s left in the same position for lengthy periods. Definitely needs a discussion with the team around her.

agiuga profile image
agiuga in reply to Lindypops56

Definately covid has had an impacy. Six months ago she had a breakdown and was sectioned for a while. We have upped our visits to every two weeks. She is fine when we visit. My frustration is that the carers keep saying "We have a plan" as if that solves everything -but nothing changes

Lindypops56 profile image
Lindypops56 in reply to agiuga

I’m so sorry - you must be very worried. I know how that anxiety can take over abs dominate your own life. I hope as life gets back to normal her life quality improves too. Covid restrictions have been especially challenging for those with physical and learning disabilities 😞

Dear Agiuga. I’m not sure what part of the country you are in or the age of your daughter but my son has carers trained in applied behaviour analysis. ABA They are good at dealing with this sort of behaviour. It is no quick fix and does take time. Perhaps you can see if you have such an organisation where you live or a positive behaviour support team at the local authority. Good luck

Thank you. I will ask her psychiatrist about it.

Sarah_Mencap profile image
Sarah_MencapAdministrator

Hello

There are some good suggestions on here already. Please do call Mencap's helpline (mencap.org.uk/advice-and-su...) and have a chat through the options with one of our trained advisors. It is free and confidential.

Best wishes

Sarah

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