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

[FaultybutFabulous]

I am the sole carer for my lovely mum but it's tiring and not helped by the fact I don't drive. Walking there and back takes an hour if I go from home. If I go after taking ds to school it's 50 minutes walk there and all uphill! I was wondering what other daughters/sons do in their caring roles? I cook, clean shop, sort prescriptions, appointments, all the admin side of things, banking, gardening, and lots of emotional support. Mum has a physical disability and a few other medical conditions that I help her to manage but she is cognitively fine and mainly frustrated she needs help with anything yet at the same time leans on me a lot.

I don't mind doing things but I need a break sometimes and not to be doing it all. Now the dc are back at school I go during the day so I'm not having to do dinner at mum's.

I find employed work difficult because I'm autistic as is my eldest that's at home.

Mum can attend to all her personal hygiene needs except her nails, can cook and prepare food, and put the washing on and hang it out but she really shouldn't. Because of her disability if she were to fall it would be catastrophic so she can't hoover or clean or shop and she shouldn't do the washing. She can't go out on her own. However on bad days she is reduced to hygiene needs and getting dressed and that's it. It can be very variable. She's sharp as a tack but won't do internet shopping or online banking beyond checking her balance although she sometimes pays for things over the phone. If she has a delivery she can't take it into the house. She walks with a trolley with shelves inside.

DM is 80, house bound (would never leave the house alone as she can barely walk and cannot walk unaided). She’s full of arthritis, in generally poor health.
I’ve just been there five hours gardening- doing little things her gardener doesn’t do to her specifications. Little jobs she can’t reach or would find very difficult. She does try to pay me, she is very comfortable but I don’t take it as I work and earn well.

DM is in constant pain, but she will do all she can to keep active. She gets up and into the bathroom, takes her two hours to bathe and get ready. (She would never let me help her with personal care if she can help it).
She does her own washing, will run the vacuum over, wash up, these tasks will take her literally hours to complete. She will rest throughout the day. She won’t just sit around, even though movement is painful.

Could your DM do a little more than she does OP?

Would she have to move in to residential care if you could no longer care for her?

Our experience of carers has been poor on the three previous occasions when she has had care needs but for a limited time due to illness or injury. The morning visits were too early and she wasn't awake yet. The teatime ones were too brief, no meals done or anything and they wanted her in ged at 6pm. She can get herself up and to bed now so doesn't need that from anyone. Visits were for half an hour and not worth having so I did it instead. She has care call for if she needs anyone at night but tends to call them if she is feeling unwell and they send an ambulance out who confirm she's fine and it's just anxiety.

I think you are right that she is too dependent on me on a daily basis. I feel like a mother instead of a daughter at times and she hates that as much as I do.

I must add that I am very close to my mum and we enjoy spending time with each other. Even before she became disabled we saw each other several times a week and spoke daily. She's always been very involved with my dc and we holidayed together, shopped together etc. I know mumsnet finds that odd but we both enjoyed spending time together especially since we are both on our own as far as adult company goes. We have our own friends of course but I'm not a people person and prefer my own company most of the time.

Well good luck with getting advice from Mumsnet op. You've put up a barrier to every single suggestion. Perhaps you just wanted a good old moan.

My question was asking what other people do for their parents.
I will see what social services can offer but going off past experience it will be next to nothing or nothing that's suitable. I don't know if private care is any better? Maybe our past experiences weren't typical. I also need to think about what mum will accept in terms of help. The gardener is crap so she needs to find a new one.

I think you are doing way too much. Surely you could buy ping meals for your Mum and she could heat them in the microwave?

She could use the attendance allowance to pay for a cleaner and gardener.

If she is still mental active, she should be arranging her own appointments.

It sounds as though she is happy to lean on you with absolutely no thought to your quality of life.

Plenty of people grow old without a daughter to come every day and spend hours doing stuff.

For example, I have three ds who each have their own needs.

I will not be asking anything of them as I age as they have their own lives. I would far rather go into a home and not be a bloody burden to them.

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. 💐

No, you haven't upset me, don't worry. I'm just trying to work out what to do for the best. Yes, I do feel like I have to put in the hours. I know I won't be asked to prove it but it would feel like a lie to do less. Although I did 11 hours a day for several weeks after she'd had a nasty illness and then did less hours per day as she recovered and didn't even know about carers allowance then. Then I did the same again, twice with other illnesses. She's quite healthy now considering but on opiates for pain and some days are really bad for her and she needs a lot of support. Other days she's fine..

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

But to get the carers element if universal credit 35 hours minimum of care is specified. So that's me personally doing 35 hours. All for £167 a month. I'm rich I tell you, rich!

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?

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.

Oh, I didn't know I'd be exempt from work commitments if I'm a carer. UC are not very forthcoming with information on being a carer and the ins and outs of what I need to do and what I can claim. It took ages to sort out. I could also claim carers allowance but then my mum would lose her pension credit and something else so I didn't apply. I have the forms but when I was told she'd have money deducted it didn't seem worth it.

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

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 ?

She could, yes. I don't like to take money off her though which I know is daft.

I think she gets about £50 a week extra on pension credit and she gets the higher rate of AA.

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?

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.

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.

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.

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?

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!

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.