Just burst into tears having dropped Mum at care home for respite

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My Dad had not been coping at being Mum’s main carer so have sorted some respite care for two weeks.

Dropped her off this morning and have been in and out over the day and just want to go and get her and bring her home.

Not sure how well they’ve read the care plan or if I should have been more bolshy about the care plan but she managed to spill a whole cup of tea over herself as she needs a beaker. I’m not sure why my Dad didn’t ask for a beaker after lunch mind you and make sure they knew. But he’s all in a muddle and exhausted, hence the need for respite. We did press the call bell and it took a little while for someone to come.

She’s so vulnerable and I’m just going to be worried the whole time she’s in. She’s not one for falls normally but worried without the focussed care she might be, she’s blind so can’t always see what she’s doing and is not very mobile at all so falls aren’t usually a major risk.

Feels absolutely terrifying that we can’t get good care even paying what we are paying through the nose for this place.

I am possibly over thinking as it’s been less than 24 hours. And I should know what care homes are like and not be unrealistic about levels of care that are likely from other relatives. I think I kept telling myself she would be safe and now I’m not sure she will be.

I’m going back later to get her settled into bed but then worried my daughter is going to start freaking out I’m not at home. The prospect of 2 weeks juggling normal life and intense care home visiting is also bringing me straight back to when Mum was in hospital and that nearly broke me.

Not sure why I’m posting really - probably asking for some ‘buck up’ messages and also any tips for making sure all the staff are aware of what Mum need at least to prevent anything dangerous.

Aww mate, I've been there and it's so hard. The whole point of respite is to give you guys a break and a chance to decompress. That's you as well as your dad.
Your mum will always be at risk of falls, either at home, in respite or in hospital. See if you can get a physio referral as exercises and mobility aids might help.
My only advice would be to consider support services at home. Live in home care costs a lot less than we imagined.
It's so hard.

Your DF isn’t going to get any benefit from your DM being in respite if he’s there with her all the time. The constant coming and going of all of you is unsettling for her - you need to be brave and step back to let the staff look after her. In saying that, my DM was the same when my stepdad went in for respite except she ended up collapsing at home and ending up in hospital herself.

Thank you so much for your kind message! Out of curiosity how much was at home live in care? Unfortunately it’s a degenerative disease so Mum won’t get better and I was hoping to convince her care homes aren’t so bad with this stay.

So all future possibilities are worth thinking about. Trying not to write this off after less than 24 hours.

Kindly, you need to step back & let the carers work.

Have a rest.

You do need to step back and rest. The problem with the beaker will have been sorted out now.

Not an ideal start and I am sure that it's knocked your confidence in the place . Try to move past this and take advantage of the fact that it is a safe place and give yourself and your father a well deserved break . This first time is hard but she will get into a routine . If there are any other special things she needs especially being blind make a note if it and request it highlighted on her chart.

Maybe you could make some lamintaed posters for her room. Reminding that she needs a beaker, and that she is blind so please announce yourself

Or even one of the "about me" posters for her room. So when the carers go into her room, they can immediately see what she needs. Diet, continence, sensory issues and name.

I woupd also make sure you use a laundry marker on all of her clothes, as they will no doubt lose/forget which clothes are hers.

I think you need to make the most of it, and try to just visit once a day. Obviously keep a close eye during that visit that her needs are being met.

We found live-in care in the SE (SE England that is) for £200 a day - and if that's not needed, visits by the hour /2hrs for £20/ hour.. Someone coming in regularly to help - and crucially, share the responsibility, but from an experienced perspective, is invaluable. Would your dad consider "bringing in experts" for mum's sake? Would mum accept getting help so dad can rest a bit more (the carers we have coming to mum are really flexible and do laundry, cooking, wash mum, help her with physio, all sorts)

Mum doesn't like having to have them, but she does like them iyswim.

Im sorry, it's so knackering isn't it. I have felt on the verge of tears for weeks and i think it's as much tiredness as anything else. Takes me back to when the kids were tiny...

("live in care" at that price was around 12 hours "on" per day with a couple of hours off, and expecting not to be woken at night more than occasionally. But if your df is able to do some of the care still this would possibly work? And even 4 hrs per day is going to help him a lot if you can manage that?)

Ask them if they’re happy for you to install a little camera in her room for your peace of mind. I worked in a care home once and that would be my advice to anyone

I’m sure they’re lovely etc etc but I’d feel like you do

I go into care homes ad part of my job.
In your case I completely see why a beaker is helpful with visual impairment but in general its much better not to have a beaker and often it's the poor care homes that just give everyone a beaker to reduce spills. So I'm impressed that thay aren't giving out beakers. ( if that helps).
Agree with others that you need to step back if you can. But big hand hold

So sorry OP. What a horrible feeling. I’ve not been there but can only imagine how hard that it. But others are right and it won’t be respite if you’re there all the time.

Im hoping that after a few days they’ve have got to know her a bit.

as others have said - some easy read snap shot posters or pages of the key needs and what she likes.

“I’m blind and need you to….
”I prefer to have…..
”I must have help with….
”If I do/say XYZ you will need to…..
”I like my tea like (add a photo!)

It is hard to let go of the care you and your father have given her and trust strangers to do it. I do get it, as went through this very recently.

My own dad went into respite in July and has now become a permanent resident - mum just couldn’t look after him anymore at home even with carers coming in. They didn’t have a spare room for a live in carer so we felt the next best option was a nursing home (dementia & mobility problems). I felt guilty, and also felt the staff didn’t do things the way we would’ve at home. Mum would cajole and nag dad about eating/drinking etc whereas the carers have a different relationship with dad and will listen and support but respect his wishes.

You do need to step back and trust the carers to do their job. They won’t be 1:1 all the time like you/your dad can be, that’s not realistic, but they need the time to get to know her and build a relationship with her and build trust. It’s very important too that you and your dad get a break or you risk putting your own mental and physical health at risk.

Sorry I was midway replying to this before I pressed send. I do know this and you’re right, I think the trouble is just Mum making herself heard - she can’t see or move or shout so really needs her buzzer and even that seems to be a bit of a challenge for the staff at the moment! I did say that we’d rather they’d let us know if they can’t meet her needs and I need to just keep reminding myself it’s two weeks and she’s safe. I think it’s the idea of her wetting herself or something because she couldn’t get to the bell. But equally Dad is exhausted and I hope is asleep now and home.

The labelling I have at least done to a ridiculous degree 😂. The only things I couldn’t work out how to do were her socks and bought new ones that can be lost if needs be.

So we currently do have carers coming in morning and evening, but then Dad does the rest with me providing some support once a week and ad hoc. He absolutely needs a possible sleep in service though and we’ve discussed this, I cleared a room, he filled it with junk again. After Mum comes out from this respite that’s my priority as he just can’t cope being woken up and not sleeping through at 75 with his own health needs.

It is so so tiring, you are right!

That’s interesting and the care manager does seem really good. I think my main concern about this is Mum is possibly more on the extreme end physical needs within the home if that makes sense. She doesn’t have any dementia which I know is a whole other type of complex needs. She also doesn’t need nursing care specifically as is quite healthy about from being blind, unable to move and with a very very faint voice bless her - an incredibly cruel rare disease.

Interesting, luckily Mum will be able to tell me if there’s any mistreatment, but I will think about it.

Just want to send you love and solidarity, going through something similar with my 84 year old dad….my mum is dead and I’m an only child….my husband and friends are wonderful but it’s very hard and bloody lonely with stress that’s off the scale , so I feel for you I really do….take care and try and relax, hard as that is xx

Thank you for this and and sorry about your Dad - it reaches a point where you have to do what is best and safest for everyone. You are right as some of her current drop in carers have become so trusted and supportive so I’m hoping she finds that here. She was so tired I think she’d almost fallen asleep and she was nervous about going in so hadn’t been sleeping. So I just hope she and my Dad can both have excellent night’s sleep.

Honestly thank you for everyone for your support and advice - this board is the best!

I fear "waking nights" may cost more than live-in sleep-in (which is what we had when mum was first home from hospital). I got the impression most were ok with being woken once, but only once (which was enough.luckily) though some would possibly accept more wakenings and take more time in the day to catch up on sleep.

Your Dad is presumably struggling with everything including decluttering the spare room...can you persuade him that needy families/the recycling centre could make much better use of the junk than he can.....?

Does the disease she has have a uk charity / support association?
If so you could contact them to see if they have any resources or training for care home / carers. I have arranged this before and most carers find it really helpful. And the info coming from an outside source makes it easier as well?

I know it's not the same as he's not elderly but it takes a while to build up trust. My little boy goes regularly to our local hospice for a couple of nights so I can catch up on sleep and it is only on the last few stays that I have learned to relax when he's in. I agree that some form of passport can be really useful in this situation, we have a short, simple document hanging on the back of his wheelchair that could be photocopied and blutacked on to the wall/door of his room when he's in for a stay.

I labelled my Mums socks. I sewed just the short edge of the label to the top of the sock on the outside. So when the carers put them on and fold them over they can tuck the label under the cuff. This way the label doesn’t rub against the skin.

I hope that makes sense.

Oh OP - I feel for you.
My DD had very occasional and sporadic one night respite care from a hospice before they decided to cut her off as she doesn’t meet their criteria for care.
The first 2-3 times I didn’t sleep a wink. I think she had about 8 nights in total over the years but by about occasion 4 I slept so hard I felt sick from decent sleep. By the last occasion I slept til 9am. I couldn’t believe that was possible.
It takes time for the staff to get to know each person, which is kind of good if you think about it - they aren’t just treating her as a number but are seeing what she can do.
Maybe some things will go a bit wrong initially but she will be safe in the most important way and your dad will get more used to it as the days go by.
These little respite windows will ultimately be a thing you all look forward to - my DD absolutely loved her little bit of independence (I’m a bit weepy tonight from other disability bashing threads and having yet another horrible meeting about what she can’t do tomorrow and just thinking about how much she loved those nights might set me off again!).
Wishing you all the best and a good rest.