Lack of respite care

Hi there,

I have just joined the group and was hoping I may find people in a similar situation to me! I was a paid personal assistant for my Brother in law, a 38 year old man with Down Syndrome, for about 5 years. Unfortunately my Mother in Law passed away 2 years ago and my brother in law came to live with myself and my husband and our 2 children aged 6 and 2. He tried to live independently twice before but got severe depression so we are hoping to keep him with us for a few years unti we can get him ready for independence. It is extremely hard work as you can imagine, but he was taken out by PA’s each day and one of them provided overnight respite a few times a month. Since lockdown we havent had any respite at all, as he is not allowed in their homes and they are not allowed in ours. My husband and I are finding it very difficult to cope, especially with 2 young children. My brother in law has very obessional behaviour and we are finding it so hard not to get a break from it. My husband is a teacher so is having to go in to work every so often, leaving me to cope with home schooling our 6 year old, a 2 year old diva and my brother in law. We are finding it so hard!!!


Hi and welcome to the forum. Although I don’t have any experience to offer you on respite care, I’m sure others will respond shortly.

This is an import point you raise and one that I think forum leader, Michael, would want to add to his list of issues carers are facing during this uncertain time.

One would think that respite ought still be available, with the appropriate safeguards. Unless the agency is now so short staffed… Is this just another way that unpaid carers are being short-changed?

Your brother in law is never going to be able to manage independently, so you need to start pushing really hard for Social Services to find a long term placement for him, ideally his own flat in a complex. Sadly he has probably already peaked and is now going to be going downhill, especially as there are chromosome links between Downs syndrome and dementia, which may develop early. All planning needs to bear this in mind. My own son lives alone with carer support, but I don’t think it will work without me.

Hi there,

Sorry, when I said independently, I meant living without his Mum or us. Didnt explain myself properly!! He has moved in to houses with other adults with similar conditions before with 24 hour care, but his Mum brought him back home because she felt guilty. I just dont know how much longer we are expected to go without a break!! I am nearly at breaking point because he is such hard work!!

Are you in touch with the Social Services Learning Difficulties Team? You CANNOT be forced to care for him.


With two young children of your own to look after this situation is impossible to sustain.

I myself am a parent of two young people aged 24 and 20 with autism and learning disabilities. There is no respite.

The best thing for you and your family is to ask social services to help find a supported living complex for him to live in…if you waIt for him to be independent enough to move sadly that wont happen.

Perhaps at this time due to covid a self contained flat might be the best thing with support rather than communal living .

Also make sure he is on the local housing register as well so that the council know what the local housing need is .

There is often a welfare form that you will need to fill in as well as the main registration.

Keep in touch

You need to start with Social Services, and be absolutely INSISTENT that the situation is URGENT.
Don’t be understanding when you hear all the excuses, they are the ones ultimately responsible, by law, for his well being. It’s a real shame this wasn’t all sorted out when Mum in law died, or years earlier.
Does he do any day service activities, these should be available as soon as lockdown ends, so start pushing for that too.
It would be helpful if you wrote your own “care plan” for him. Social Services should be able to send you a sample, and using the same headings, you could write down his background, health needs, family, what he likes, etc. etc.
What is his financial situation? Does he have over £23,000 in savings or inheritance?

Hi Claire,

I totally understand how 24/7 caring is stressful during Lockdown. Living and caring for someone is very different to providing day support. It’s my understanding, unless your brother in law is in the high risk group and has had a letter saying he must shield, the PA’s should be able to still come and take him our for a walk etc - they are able to provide support to a vulnerable person and he is vulnerable. Exercise is important for his health and wellbeing and this would give you a break. He could even go for more than walk one a day, maybe the staff could take him out for picnic or to buy his favourite food from the shop? If this isn’t possible then if you have a garden, could they spend time with him out there?

It sounds like you were working towards supported living for him and Covid-19 put a spanner in the works.


I am in a similar position. My Mum was unwell at the end of March and her carers, 4 visits a day, stopped attending. They were short staffed and thought she might have COVID19. She had a leg ulcer that was infected. I was offered 2 weeks respite but the care hone offered was taking untested patients from hospital. I brought her home with us but now feeling the strain. It’s obvious she can no longer live in her house unassisted. Just exhausting! I’d like some info on care homes. Are local homes COVID19 free? Do they have PPE? I feel guilty enough having to send my Mum to a care home but am I sending her into an unsafe environment. How can I find the information? Difficult to make a decision without reliable information.