If you care for your parent, what do you on a daily basis?

Re: if you can’t visit/need a respite for a holiday, a carers association may be able to help you. I think this is one the things my local association offered to help with but I don’t qualify as I’m an unpaid carer/earn too much. Again, my experience is that there are big variations from region to region in what help is available. Ultimately, if your mum is so bad she can’t go day to day without assistance, you’d need to think about respite care in a care
home. You could also try asking for temporary care from a care agency however, I have to say that of the two agencies I have used, neither would offer that.

Maybe try asking one of the less present siblings? Personally, i don’t go away much, never for more than a week and every holiday is topped and tailed with a day at my parents. this means I need to take extra holiday to get my holiday. The helicopter sibling refuses to commit to any given date when they will visit (either me holidaying around them or them visiting when I have something booked and they never check that my parent has someone to be with at Christmas) so I’m not able to go anywhere for a fortnight. I bitterly resent them for that and their commitment free life-style. They don’t get it at all. If you can get one of your siblings to assist, even if it’s for less time then you’d be there normally, it would be ideal as they can see what you do and how hard it is.

I'm a social worker in a carers team. Not all local authorities have them but they all have to offer you a carers assessment. Ask for one. They will check you know what local support there is etc and may give you a one off ( yearly) payment for a break/ something that helps. We have links to benefits advice too. Your mum can also have a care needs assessment herself. If she is assessed as eligible for care you could be her paid carer with a direct payment. But you'd need benefit advice first to see if you'd be better off. I would decide some boundaries now as well as ime cared for people can expect more and more from their carers.

Hi faulty(you are not in any way!) I understand your difficulties and how hard you may be finding it. Well done for persevering and doing what you feel is right. Every person has different needs including the oldies in our lives. I apologise now if I offend you, I have to use a lot of humour to get through every day. I am 36 and have an 8 year old, we moved 200 miles away from our home and life in April to look after my nan. Yes it is bloody hard at times but I do not regret it. She is my nan, she looked after me when I was young and my parents needed to work, I will be there for her now. She does not need a nursing home as she does not need nursing care, we can manage at home and there are no local care homes.

My day goes like this...

5.30am get up as her dog is barking to go out (he also has dementia!)

Me time until 6.30am

6.30am my cat wants human attention!

Sort house out, empty dishwasher etc

8am get my son up for school etc

8.30am get nan out of bed, toilet, tea and breakfast. Put washing on as she is incontinent

8.45am school run

9am carer arrives to do wash/shower (I used to shower nan but carer does it now)

10am get nan drink and go to toilet

12.30 carer comes to heat up a pre made lunch I've made and check her pad and any personal care etc

1pm more washing

2pm give nan another drink and do toilet run/change pad etc

3.30pm school pick up and spend time with my boy

4pm another drink and toilet

6pm carer comes to give nan her pre made dinner and toilet etc

8pm final toilet trip before bed. Get nan ready for bed, put cream on etc

8.30pm bed time for my boy.

Put final wash on for the day

9pm my bed time!

In between these times I'm cleaning, doing washing, gardening, talking shit to my friends on the phone!!

I wish you lots of love and hugs, it's not easy xx

@MarvelMrs it’s definitely worth ringing Age Uk however their offering varies per region. Mine doesn’t do trusted trader. I so wish it did as finding help, especially when you don’t live in the same area that trades would cover, is massively time consuming and worrisome.

@FaultybutFabulous you said somewhere upthread that previous in home care when your mum was ill/recovering had t worked out very well. Companies like Home Instead offer very different care - minimum one hour time slots and staff who cook, clean, chat - basically whatever you ask them to do within safe limits.

I still think you have painted yourself into a corner with the UC. 35 hours care is a lot to justify a small uplift. The day to day grind seems to be dragging you down but on paper (and possibly from your mum’s and siblings view) you aren’t doing the hours necessary to keep that credit so it would be hard to justify buying in additional services to give you a break. Sorry if I’ve got the wrong end of the stick here - I’ve only got what you yourself have said in this thread to go on re: visiting 3 hours a day and UC expecting 35 hour care to justify that element.

Is money an issue? Can your mum be left alone for any length of time?
There are organisations in most places in the UK that provide paid for support and companionship services. Search for your local Age UK office and contact them for details. They also have trusted tradespeople for all areas so you could find another gardener through them.

www.simpleonlinepharmacy.co.uk/medications/dosette-box/

This service delivers the medicine prepared in days/times sealed and reorders automatically. It would at least save you
one job in sorting your mum’s medicine needs.

Oh, I meant to add, I registered as an (unpaid) carer with my parent’s GP. That automatically got me registered with a carers association who have been quite helpful. I was really down and depressed at one point before I’d manage to identify additional assistance and accept the sibling is selfish and useless, and it helped to know that they were there and bothered enough to call me and offer to seek financial help for me - I’m actually not entitled to anything with working full time and wasn’t after money but to be honest I was pretty low and it made a difference to know that someone was bothered!

I spend 3-4 hours on the phone a week and about 6 hours at the house, plus the 1.5 drive to get there and back. Parent owns their own home so all issues with that fall
to me, plus bills, banking, any admin requiring the internet. I also garden, though there is a gardener too, do all the food shop (delivery not possible due to mobility issue), replace and mend the things that break, attend emergencies, buy gifts and do correspondence. Any services needed I have to research, find and organise eg gardener/carer who come
x2 a week. I also work full time but compressed hours so I am seen as having a ‘day off’. My own home and garden have gone beyond the point of no return. I also have a youngish child. I didn’t spend a lot of time with them prior to this assistance. They were the best parent they were able to be to me if that matters. I also have siblings who helicopter in occasionally at their convenience with no thought to how they could arrange a visit to give me a break.

I was going to say that you are going too much and it was very mean what she said about ‘you are meant to be my carer’. The UC allowance requiring 35 hours maybe changes my view a little, though the extra money doesn’t justify the emotional price being paid. It’s so hard to dial down though isn’t it? There a lots of good suggestions on here re: getting extra help however, I guess the UC carer allowance means that it is actually you who is meant to be picking this up? Sorry, I don’t mean to sound unsympathetic as I know how hard it is but that may also be the view of your mum and siblings. Could it be time to say, look I need to get a job, I can’t do this anymore, the money is too little for my family?

Have you thought about companionship for your mum?

It sounds like you're doing an amazing job of looking after her and your family. Perhaps an hour or two a week of companionship for your mum would give you the chance to have a break, knowing that someone is there and putting a smile on your mum's face and for your mum to connect with someone new that they get along with.

There are plenty of companionship providers out there depending on where you live.

Reading your post made me feel so panicky - I could have written something very similar. My mum lived in our garden so no travelling between my house and hers although it was downstairs, across the garden and back up the drive to her door! Not fun in the rain!

So rather than travel/a few hours care/travel it was in and out 10 times a day. Mum had two care visits a day - to get her up and give her breakfast and to help her to bed. I did everything else so my day would be like this:

11 o'clock ish mum would phone to say she was up and wanted to see me.

I would have to go back around noon to put the tv on and sometimes I would watch tv with her.

If I hadn't watched Bargain Hunt I would go back out at 1 to take her to the toilet and make her lunch - about 45 minutes

2.30 ish - back to take her to the toilet

4.00 ish - toilet (each toilet trip would take 30 mins)

5.00 ish - watch Pointless with her then take her to the toilet.

7.00 ish - take her dinner and stay with her until the carer came at 9 ish.

While with her in the evening I would sort her clothes for the next day and put on the tv in her bedroom so she could watch in bed.

She would often phone me around midnight to say that she had been to the toilet and couldn't get back into bed, or she thought it was lunch time and the carer hadn't been and she wanted lunch.

In between those visits I would get calls to say that she wanted a drink, she couldn't get the phone to work (yet she could call me to tell me), there was a problem with the tv (she could not work the remote), she couldn't find her hanky, she thought there was someone in the garden, she had heard someone outside calling my name - call after call.

Plus I would do her cleaning, laundry, shopping, finances, facilitate her social life. She hated having carers and felt that I should do everything because:

"Well you are supposed to be my carer" and that annoys me because I do so much and feel like she doesn't realise I need time to do my own things at home.

We were very close (I am an only child, dad died 10 years ago) and I sort of fell into the role of carer from being the one who pushed her wheelchair and cooked her meals to doing everything my dad would do when he died and then being her hands and feet with no option of a life of my own. I could not leave the house without having to see her and check on her before I went and when I came back and towards the end I was unable to leave the house unless my (married) daughter was able to sit with her. My husband and I couldn't go on holiday without arranging for someone to stay with her or for her to stay with my cousin.

Now she is in a home and I am slowly getting my life back.

I've never done anywhere near this, no. Never been more than a weekly visit except when she was either in hospital or just home from an operation.

I think it's great that you like spending time with your DM. But thats different from caring, and this sounds extremely tough.

Would she consider buying you an electric bike? Just a thought, they aren't cheap but it would save you a lot of walking time.

I think you would benefit from finding a local Carers Support organisation and taking advice from them. Why can't your mum have a hot meal delivered daily. Could she attend an Age UK for some company and a meal?
She will not lose her Attendance Allowance but I have no idea about your UC. You could do some of your caring from your own home looking after her finances and appointments etc. You need time at your home too. Could she get a taxi to yours one day each week so she could see you but you could get on with some of your own jobs?

Your mum will be getting the extra sdp on her pension credit of £69.70 and AA even at the lowest rate is £61.85 per week., so over £130 extra a week for being disabled and needing help. Could she pay you some of that each week ?

If she gets severe disability premium on her pension credit she would lose that if you claim UC carers element also I think.

Have you had a Carer's Assessment from SS yet? You are entitled to support in your role as carer, you do have to fight for most things unfortunately. I am live in for my father and do everything except cleaning and gardening. It can be relentless and exhausting, but I am happy to do it. I am fortunate in that my father is, on the whole, appreciative.

Yes but you won't just be getting that will you ? Presumably you get the other elements of Uc also and have no work commitments because you are exempt as a carer?

She doesn't need to have 35 hours care to get Attendance Allowance, she just needs to have difficulties with personal care.

I enjoy spending time with mine too. I have a young DD, DH works a lot. When he has time off we go away.
DM can manage day to day- to a degree. She just likes to know I’m around. I’m there when she needs me. I have a family of my own, you don’t have a child so they can care for you…

Do you think that claiming carer allowance is making you feel you have to put in 35 hours? You really don’t have to put in the exact hours.
No-one knows what’s your mum really needs, but you sound like you need some respite? SS provide that if requested.

Once a week we take DM out, shopping and a meal. She values this way more than me doing things. I don’t know the extent of your mum’s disabilities. My DM suffers more with pain - nothing can be done.

I hope I haven’t upset you and didn’t mean to. 💐