Just joined and saying hi - carer for my mum with Parkinson's

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Hi everyone, I’m Rachel, and I moved in with my mum, who has Parkinson’s disease, two years ago when my dad died. My husband is here too, and I have two brothers, but everything care-wise falls to me.

We are very lucky in that my mum owns her own home and has savings, but care is also so incredibly expensive. She is going in to respite care in two weeks time, which she doesn’t really want to , but I am so tired.

I work from home, I don’t go out unless it’s with her for her appointments. It’s more intense now because she has started to have incontinence - of the smelly kind. So even if I had more carers coming in to free me up, she might end up sitting in her own excrement for hours on end, which would be distressing all round. I feel trapped.

I know I am more fortunate the many, but also I’m autistic, so dealing with people all the time and never having time alone is really hard. I like to read and love arts and crafts, but I’m just not doing anything any more. Really trying to count my blessings, but it’s getting increasingly difficult.

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Hi @Ro1980 Welcome to the forum, lovely to see you here. You’re definitely come to the right place - you’ll find a lot of lovely friendly people that you can connect to, at your pace and when you want to. Here’s a link to Roll Call - a part of this space where we post general daily comments like a neighbourhood community centre or chat over the fence: https://forum.carersuk.org/t/roll-call-july-2026/128662?u=victoria_1806

I’m sorry to hear about your Mum - I now what that incontinence is like, I left work abroad to return to help my Mum care for my Dad who had a lot of different issues like heart failure, rheumatoid arthritis, bladder cancer and vascular dementia…the cancer and related operations made toileting difficult.

You’re doing amazing things considering everything you’re going through. Please don’t feel the need to silver line things - every person here has a painful experience and we get it.

Well done on orchestrating respite care - the coordination AND recognising how much you need the break. None of that is easy.

How’s your Mum’s mental health, are you able to communicate and feel understood?

I can understand how everything’s falling on you - I hope your brothers don’t complicate things for you.

Sending you hugs. Glad you’re here. You’re amongst friends.

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Welcome to the forum. Well done for organising respite for your Mum.

My Mum is due to go for respite in September to allow my husband and I to go on a nice holiday. She doesn’t want to go either! However, she does understand we need a break. She promised she would go. I’ve had a few comments about the room not being suitable. My response is, you promised to go and we’ve spent a lot of money. She said I know I promised. Still hoping she will go, but really hope she won’t refuse at the last minute. Last year she had decided to go permanently to a different home and backed out at the last minute.

I hope both of us get our Mums to go for respite! Fingers crossed!!

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Welcome to the forum.

A few questions to start with, to set the scene.

How old are you all?

Does anyone have Power of Attorney for mum?

Is she receiving Attendance Allowance?

Exemption from Council Tax?

If you are doing all the work, is mum paying you for what you do?
Would you like mum to have carers at home, or move into permanent residential care?

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Thank you so much for the warm welcome. It’s so good to be here among people who just ‘get it’. I feel like I’ve been saying to so many people that I’m struggling - my husband, my brothers, even my mum, and there’s just nothing there other than platitudes. But then I had no idea what it is like for people before I was in it myself.

Wow, that’s a huge life change you made too; it sounds like you’ve been through so much.

It has taken months of doing things really slowly and bit by bit to arrange the respite care!! People keep asking me if I am going to go away, but I just tell them I don’t have capacity for that. To put my mum’s name in everything, pack for her, organise her meds, pads etc to go with her… there’s nothing left for me to be able to think about organising a holiday! But I will have the most amazing time just being free for 12 nights. Not knowing what time it is (not needing to know for tablets), going to bed early, or having a lie in if I feel like it!! Bliss!

My mum is not the person she was by any means, but she doesn’t have dementia. She doesn’t have any appreciation of what I’ve given up or how hard it is for me. Maybe that’s for the best. But you know, she’ll say to someone visiting, “I always tell people if there’s something you want to do, go and do it! Because you never know what’s round the corner - look at me!” And I’m standing there thinking, where would you be if I took that advice?! Oh, and the other one I love is her saying to me how good everyone is to her, how wonderful my brothers are. Are they?! I must have missed that!
Sorry, this is turning into a rant :laughing:

But thank you. Big hugs right back at you. x

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Ahhh yesss @Ro1980 non-carers don’t quite get the simple ‘no clock watching’ thing. like I said BRAVO on getting all that organised…regardless of what others say/don’t say you’re taking care of yourself and WE all know how important and essential that is.

BIG hugs

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Oh my goodness, you must be on countdown too?! How long will your mum be in respite for? Where are you going on holiday?
I find my mum ‘parrots’ things; so she tells people that “Rachel needs a break” and that’s why she’s going to respite, but she has no real appreciation for how tired I am.

We must stay firm and make sure they DO go!

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Hi, thank you!

I am 45, my mum is 78. Yes, I am next of kin and have Power of Attorney for her.

No, I haven’t filled in the forms for Attendance Allowance yet. I do know about it, but I haven’t been able to face the form filling yet. Maybe after respite… And as we live with her, (me and my husband) wouldn’t we still have to pay Council Tax anyway?

No, my mum doesn’t pay me, but she does pay for the food shopping, all the household bills etc.

She has a carer for an hour and a half Monday to Friday. It’s a really tricky balance (probably my autism) to not feel invaded by lots of people negating the benefits of having less to do, if that makes sense? But I am looking at more regular visits for a day or two a week, to allow me to go out and do things… but because of the faecal incontinence I don’t know how she would cope with that if she had an accident between visits. Honestly, I would love her to go into residential care, but it’s not what she wants. I genuinely think it offers so much more for her though, compared to being stuck at home just with me and the TV all the time.
She has savings that mean she wouldn’t be eligible for any financial help, and she owns the house. Obviously we don’t know how much longer she has left, but having to sell the house would be heartbreaking too. I also don’t want people (my brothers) to think I’ve manipulated anything just to get the house to myself, like some reverse cuckoo situation!!

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I had 2 useless brothers. You will find many here have similar relatives. I stay in a hotel in Crete just for single travellers. Bliss.

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Hi @Ro1980 and welcome to the forum. It’s been great to find a group of people who understand about being a carer, since I joined recently.

I care for my husband who has Parkinson’s disease, so your comment about clock watching resonated with me. We’re both in our early 60 s. J now has his PD meds 6 times a day, but at more frequent intervals later in the day, plus painkillers. It’s a lot to keep track of.

I find the “Parkinson’s mask” hard too. He used to have a big smile, but now he mostly looks blank or grim.

Well done for making respite happen, despite the resistance, and realising that your own mental and physical health is very important.

Wishing you well.

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The Department of Work and Pensions can arrange for a Visiting Officer to come and fill in the forms for you. I had one recently to do my own Attendance Allowance form. Nothing to fear, really well trained and pleasant and keen to help. You are missing out on a lot of money!

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Hi. Mum will be in respite for 2 weeks (minimum stay). We will be in Menorca for 9 nights and will have one night hear Bristol airport on the way out.

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Read up about NHS Continuing Healthcare - CHC. If in the future mum needed residential care, and qualified for CHC all her care costs would be entirely free, as it would be if she went into hospital. So you would not have to sell the house to pay for care.
There is another rule that might apply, called the Property Disregard.
As you are living in mum’s house, it’s likely that it’s value would not be considered.
Do your brothers live in mum’s house, or elsewhere?

If you Google Charging for Care you should find the .gov pages which are very clear.

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Thank you so much for all this. I will read up on it all.

No, my brothers live their own lives elsewhere, one local, one at a significant distance. They are essentially unaffected by any of this.

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Hi Hazel, it’s a really nasty disease, isn’t it? My mum doesn’t have dementia, but she is not the person I used to know at all.
She’s always been an anxious person, but this really magnifies her negativity, and it’s exhausting always trying to prop her up and be the positive one. I get that it’s awful everything that she’s going through, but as her world has shrunk she really doesn’t consider anyone else either.

Do you have any contact with Parkinsons UK, or go to a local group or anything? It’s not something we’ve done, as my mum was too scared to see people with more advanced Parkinson’s than hers, but I’m thinking of going on my own, to talk to other carers. x

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That makes the situation easier.

When you get a chance, have a look at the website for the Office of Public Guardian, and then look at paying relatives to care. If mum needs care and has over £23,000 in savings, but doesn’t qualify for CHC, then she will have to pay for all her care until she gets below that level.

My mum’s will initially divided her estate up equally, but since I provided all the care, she changed it so I was given more and they were given less.
Had she not done this, my brothers would have been given the same amount as me, although they had done absolutely nothing for years!

Remember that every week you keep mum out of residential care you are saving her an awful lot of money! The more care mum has at home, the longer she can stay home. Think about the jobs that you need to do, and the jobs that can be done equally well by someone else. Cleaning and food preparation, and laundry especially.

Don’t feel guilty about going on holiday for a complete break. I now go to Crete for 2 weeks every September. Although my brain damaged son doesn’t live with me any more, I do lots of things for him. I’ve had lots of health issues, for 2 weeks I can switch off and just be “me”. When I get back to the hotel, I shower and make myself a cup of tea and sit on my balcony reading a book in absolute peace and quiet, before dinner. I used to think it was a “waste of time” but now I think of it as peaceful healing time.

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@Ro1980 welcome to the forum .if you are going to look up CHC you go to the caretobedifferent.co.uk website it is all on there . It is not based on the illness or diagnosis but on your mums primary health needs. You have to have primary health needs and pass a checklist to be able to get an assessment for it. Look at the criteria and the checklist on the website that will give you an idea. I’ll be honest it is not easy to get . Also if your mum ends up going into residential care the council could say that you moved in with mum to deprivation of assests. I’m only telling you this to make you aware of how the council is. The care that she has 1.5 hours a day I would think about if that is being used efficiently.you could employ someone to do the cleaning. You could employ someone to sit with her for 2 hours so that you could go out then for that time. Think about what would work best.

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@Ro1980 Yes we have been to a cafe meeting of one local Parkinson’s uk group. I had emailed the organiser beforehand and she welcomed us and introduced, us to a few people. Then we visited the other local group, where they were about to expand to a bigger venue. So I would recommend making contact and checking the venue and dates on the website are up to date. Hopefully it will be helpful to meet other carers.

J was always anxious and a little paranoid, but it’s worse now. One of his meds caused hallucinations and he was hearing voices outside the bedroom planning to harm us! Even going outside with a torch to check. Fortunately the team stopped that drug and the voices have mostly stopped. His memory is getting worse, and he keeps asking where his phone is. He doesn’t need it, just wants to know where it is.

Yes it’s an unpleasant disease. It must be difficult for you, working from home while caring for your mum, plus the incontinence. Plus the challenges of autism.

Hey ho. But we just carry on, one day at a time, don’t we.

It struck me that, on a positive note, the respite might be beneficial, if she enjoys the extra company and activities, fingers crossed. She could become more open to going to a care home in the future.

We also care for my mum a few hours a week. She’s almost 90. My dad died 4 years ago and she was on her own 100 miles from me with no support, drinking heavily and falling often. I managed to get her into an Independent Living flat 2 years ago, with carers on hand if needed, and she had several falls and admissions, a gangrenous toe (!) and then a stroke last year. She hadn’t been taking good care of herself and her hygiene. She now has carers calling in twice a day. She keeps trying to cancel the calls saying doesn’t think she needs it, as “they don’t do anything” and she tells everyone that I organised it. We had to blame it on the hospital staff, as a condition of discharging her home, as that seemed to be hard to argue with.

It’s such a relief to not be solely responsible for her welfare now, and be able to discuss issues with the carers who know her. I hope you start to get more support for you mum and yourself. This forum is really helpful to me, helping me feel less alone.

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It’s opened my eyes to the plight of unpaid carers, that’s for sure. Yes, one day at a time is a favourite phrase of mine, along with ‘the only way out is through!’ And I don’t even know really what that means :laughing:

I have high hopes and low expectations about the respite!! She has had some awful experiences in hospital, so she has that in her head, even though I keep telling her this is a completely different situation. But we’ll see.

Gosh, you have a lot on your plate with your mum too. I hope they both know how lucky they are to have you.

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@Ro1980 I forgot to say, I had that same fear of going to the Parkinson’s group and seeing people in a worse condition. But actually I find that virtually everyone looks better than J. I guess it goes to show that you can’t tell what challenges people are facing at first glance.

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