I need some perspective

[IthinkIsawahairbrushbackthere]

I am carer for my disabled, widowed mum. She lives in a self contained annex in our garden. Our house is designed with all the living areas upstairs and there are steps to all the entrances.

Mum has little to no mobility and is in a wheelchair so is unable to come into our house at all. I have done all her meals and cleaning for years, since before my dad died.

Mum's condition has deteriorated over the past few years and in the summer she was taken ill with a perforated ulcer and sepsis. After nearly a month in hospital she came home with a reablement package. She hated having the carers coming in - she would never know when they would come in the morning so she started getting up ridiculously early so they had nothing to do and they would come in the early evening - sometimes as early as 6.00 p.m. to put her to bed so she started getting ready for bed at 4.00 p.m..

She was most relieved when the care package came to an end and she was left with me. Since then her mobility has deteriorated so she can no longer walk from her bedroom to the living room or from the living room to her bathroom so I have to take her every time.

My normal day looks like this:

7.00 a.m. - Get up with my daughter for school
9.00 a.m. - Go to mum, give her breakfast, sort her tablets, clean the kitchen and living room.
Sometime in the next couple of hours she will phone and say that she is ready to get up. Sometimes she will be dressed, sometimes I need to dress her and then take her from the bedroom to the living room.
1.00 p.m. - Go out to her and make her lunch/sort medication.
3.00 p.m. - She will phone and ask me to take her to the toilet.
5.00 p.m. - Another toilet trip, turn on the lights (she can't walk to the light switch)
7.00 p.m. - Take her dinner out. Then she will want me to stay with her until bed time.
10.00 p.m. - Take her to bed and help her undress etc.
11.30 p.m. - Husband comes home from work and I do his supper
12.30 a.m. - Bed

And at least another three visits through the day because she can't find her glasses/the tv "won't work"/ the mail has arrived/ she would like a drink "but don't rush - I can wait"!

After six months of chasing we have finally had a care assessment from Social Services and they feel she should have carers coming in twice a day. And she is furious! She has said she will NOT be having carers. Everything is fine. She doesn't need any help. But I DO!

I am up and down stairs to her at least ten times a day. She never wants to be alone but I have a husband and family and home of my own. My husband works various shifts so if he is on an early I really want to spend time with him. But I also have a teenage daughter who needs me. She can't bring her school work out to my mum's - mum has the tv on loud and will keep talking to her over the top of it! I don't want her to be left all on her own every evening. She already spends most of Saturday on her own because I promised mum I would spend Saturdays with her at a time when she was very depressed after dad died. I know there is nothing anyone can do to help with the loneliness - she has become totally dependent on me and I have to deal with that - but I feel that if I had a little less responsibility I could cope better with all that.

Am I being unfair to insist she has these carers? I am at breaking point trying to balance her needs with the needs of my husband/daughter/my own needs. The Social Worker says that she can not see me coping much longer without a breakdown and if we don't have carers mum will end up in a home. I don't mind doing the washing/cleaning/meals and could easily spend an hour with her in the evenings but not three/four hours every single night and all the visits during the day.

Oh and I have tried spending the afternoons with her but she still expects me to eat with her in the evenings and complains if I go home early, even if she has someone else with her.

I'm really sorry to read how trapped and exhausted you feel. You could also Ask the social worker to arrange a carers assessment for you. Thats your time to talk and explore how it is impacting in your life and others in your family. You can also arrange a Young Carers assessment for your DD who is helping, if you wish.

You sound a wonderful caring daughter and a lovely family. This is a situation that is played out across the country, that a person needs care help and refuses it, expecting relative to fill the gaps and continue where they are struggling.

It's very hard and the social worker cannot force your DM to have external care support. It has to come from family member taking a deep breath and saying to Cared for Person "No, this is what I can do, my DC also need me and I'm exhausted by x y z care tasks" It's about your mum hearing you, the SW sounds like a/he is already trying to help you with FOG issues and saying what feels unsayable to your DM. The good news is that You don't get one shot at this, you can go back to adult services anytime as a carer to say, I can't do this part anymore.

If it helps, re enablement carers don't give times as it's high volume constant new clients discharged from acute hospitals that they have to fit in at short notice. Ongoing carers wouldn't be like that, the care agency can usually give better more reliable times & regular carers that she gets to know, once care is bedded in. Your DM could also talk to SW about having Direct Payments (if financially entitled) so that you can recruit personal assistants and be in control. I'm sure the SW will explore that with you and DM.

That's if she's entitled to LA care, and her client contribution (everyone pays towards their social care), as you mentioned owing her money. That might be an asset taking her over savings threshold to make her full cost/ self funding, depends on a number of factors including whether it is tied up in her home or not. They'll do a financial assessment and let you know as these things can be complicated. If she is self funding, you /she can arrange private care help and use AA, her income and savings to do that. She can't take savings with her when it's her time, so using it to secure her support and comfort now, and your current time with growing family, is a good use of it.

Sorry, I didn't finish a sentence. ... that's if her weekly client contribution is less than a weekly direct payment from LA would be.

@thickwoollytights You ask why we sit in the car when I have free time - it started off as going out for lunch or a picnic but at this time of year picnics are off because of the weather so we drive somewhere scenic and eat and read. If we stay home she will be ringing to say the mail has come or she's dropped her glasses etc etc.

Someone mentioned a dog? She has her own dog - sort of! He was with her until she went into hospital although I was the one feeding him, taking him out etc then he moved in with us. There is no way she can cope with him now - he is very barky when he is with her but very relaxed and quiet with us. Also he is used to sleeping on her bed there is no way he will fit on her new single one.

He goes out to her for a couple of hours most days but he is too much for her on her own.

When she rings you, what do you do? If the mail has arrived 'I'll pick it up when I get in'. Dropped glasses - Can she have them on a string round her neck to stop her dropping them?

Otherwise even if you do have carers, she'll still get you going round there every 5 minutes.

I'm also in the business and hear a lot of 'my wife/daughter will do it' while in the corner the wife/daughter is trying not to cry. I tend to be very blunt that this is now more than a one person job, carers get breaks and holidays and to go home at night for unbroken sleep, and their wife/daughter is getting nothing, the wife/daughter generally also has other responsibilities or health problems of their own.

Yes, they may be upset but the carer has been upset for months usually and the patient often hadn't really given that any consideration at all.

It happens to us all, one day we will all need a carer, it is the circle of life. It's hard for your mum but it is the way of the world.

@Ithink
To be blunt, your DM is incredibly selfish and manipulative and you are far too nice and kind, it’s time for an honest chat with her.
I volunteer with elderly persons and I’d be rich if I had a £1 for each one that says I don’t need/want carers, whilst their daughter breaks herself caring for them!
Tell her that she is monopolising you’re whole life and your family needs you too, even write down the timetable you did here and ask her ‘when do I get a break? when donI see my family?’ people in her position do become entirely self centred, she clearly has capacity and a lot of what you say is her guilting you, be tough and tell her it’s carers or care homes.
Can she not walk with a walker? short distances? or is it easier to summon you?

Poor you OP, I moved into my dad’s house to look after him when he was too vulnerable to be alone due to dementia, it was the hardest thing I’ve ever done and I nearly lost my mind, completely understand what you are feeling and hope you can make some changes

My sympathies OP, you are having a hard time.

My suggestion is that you book a holiday and explain to your Mum that a) you need a break and b) you need to get some carers on board now so she can get used to them.

She won't like it, but keep repeating you need some time with your family and if she refuses to accept carers your only other option will be for her also to have a 'holiday' in a care home.

Stick to your guns and good luck

If we stay home she will be ringing to say the mail has come or she's dropped her glasses etc etc.

I thought it might be something like this

Then you temporarily block her number or take the batteries out of the intercom.

Your time is your time

Martyring yourself will help no one

I hate to sound like I’m hoiking my bosom, but ringing because the post has arrived or asking you to get her glasses, is appalling

@AutumnRose1 you have made me smile!

I was so nervous about posting here because I am sure there are a lot of carers who what I do or worse but don't get paid anything or receive any gratitude. I was fully expecting to be told that I was selfish and that to care for my mum was privilege etc. But you lovely lot have made me feel a lot better - even though the situation is still exactly the same to be told I am not a bad person for the way I feel is very freeing.

Today has been good - my daughters went out together first thing this morning and won't be home till bed time so no guilt there and I walked out of mum's at 6 p.m. as my husband was coming in from work. We are planning on a glass of wine and some silly tv. I don't actually mind going out and putting her to bed as long as that is all I have to do. And especially as I have at least 4 hours of uninterrupted time in my own house!

And I offered to take her into town for a walk but it was too cold!

Your DM wants don't trump yours, and without being unkind, she's had the best of her life. Now it's your time. Too many people are living far too long and I say that as a nurse of thirty years.
A DF of mine built an annex for her parents too, this has backfired massively as now nudging 90, they stumble on and on to the detriment of everyone else.
I often wonder what kind of upbringing people have had to be made to feel guilty not to want to care 24/7 for an ageing parent. And what kind of parent allows it. You have a choice. Time to get tough.

I never understand old people dictating what is going to happen to them Really? Don't you dictate what happens to you? Or do you let other people tell you how to run your life?

Agreed it's a different issue if someone is demanding that someone else should look after them. OP's mum doesn't have the right to demand OP does the caring. OP clearly loves her mother, but her load currently is unsustainable, and risks damaging the relationship between them. OP's mum doesn't realise it, but it's actually in her interests to allow someone else to do the mundane care, in order for her to be able to regain quality time with her daughter.

Too many people are living far too long and I say that as a nurse of thirty years. Yes, but they won't let us do anything else. Until we have legalised assisted suicide, and for dementia, not just "terminal illness with less than 6 months to live", a lot of us are going to be kept alive against our will and at our own expense. (And a lot of others will be kept alive fully in accordance with their wishes - not everyone comes to the same conclusion as to the balance between quality and quantity of life).

Mere in fairness, that whole comment is about dictating to others.

OP, glad I made you smile. It was hard work; to pervert the words of Matron Mama Morton, I deserve a lot of smiles for the effort it takes to hoik mah bosom 😂

Ruining your life won't fix her.

Get a professional in to insist on carers to her face. Alternative is the care home.

What sort of parent does this? And why could anyone be called selfish for refusing?

cptartapp “they stumble on and on to the detriment of everyone else”

Agree. And that’s even the case for the nice ones, but OP, all jokes aside, your mother’s behaviour is dreadful.

I'm a social worker and she's a four call a day to me if we take out any care you provide.

I'd start with 2 and then increase. Like PP said get a cleaner, befriender etc and take the strain off yourself.

Don't mention the circumstances and the letter when around the house when you support with the financial assessment as it muddies things and 20 years is a long way back they are unlikely to check,

@ammarry the promisory note was destroyed a long time ago as its only purpose was to protect my parents should life go pear shaped and we would need to sell/separate.

This morning she asked me to message her friend and cancel her visit tomorrow because she doesn't feel up to it sigh.

The more you do the more hopeless she becomes, she can contact her friend, in future say ‘mum you can do that’ does she have a walker? to get about at all?

I think they call it 'enabling'. It is often in abuse...to be honest some of her actions do sound a bit manipulative. I hope she is not taking advantage of your kind nature and love.

Is she unable to use the phone then? Maybe she could get one of those easy to use ones

This morning she asked me to message her friend and cancel her visit tomorrow because she doesn't feel up to it sigh. I used to find a brisk "yes, of course I will but I can't do it before Wednesday" worked quite well.

I think, rather uncharitably, that half the problem is having too much time so that you brood over little problems until they become big ones. But if you've lost your spouse and most of your friends, your mobility is impaired, and you're no longer being involved in big problems (whether they're the inadequacies of the treasurer of the club you belong to or the inadequacies of the government) it's very difficult not to let little things loom large. And you know your DD can solve the problem in 5mins flat, and you forget the extra time she'll lose by being disrupted in what she's doing, and actually coming round to help you, and the sheer stress of being always "on call".

It's difficult being a mother. For so many years you're so completely invested in your daughter's life, doing everything you can to give the a good start, feeling her pain more than you feel your own. It's hard to understand that they regard you as a nuisance periphery to their life. So not surprising that our mothers (and fathers) can assume we will give them a level of help which isn't actually achievable.

It sounds like attention seeking to me. I would try oh, dear can you not use the phone, maybe we can get you a different one.

What happens if you talk with her about it? Say that you're struggling with too much to do for too many people and it would be helpful to you if she had carers. That it doesn't mean that you love her any less or that you don't want to spend quality time with her. That it's not healthy for her (or you) to rely on only one person. That you need to spend time with your daughters and husband too, and run everything that goes with having two households.

How would that conversation go?

I think kind, gentle but firm boundaries are needed. "Right mum, I need to get you up and dressed at the same time as breakfast this morning." "I'm leaving you with this jug of water and a flask, so you won't need to ring me for a drink. I'll be back over at 3pm, okay?"

I'd also get your husband and tentatively your daughters doing some of it. Not the personal care side, but if she's dropped glasses? Daughter can you please go give granny back her glasses. Sometimes hubby can do dinner and a bit of a chat. If she refuses or asks for you, a brisk "mum's busy, you've got me for now".

Maybe she could have a "job" to do to give her some purpose in life. Can she knit for charity? Can she teach your daughter to sew, or be an audience for practicing presentations, or reading essays for spelling mistakes? Could she record her memoirs on a dictaphone for you?

I think she would just get the daughter running around after her too...

Seriously you are not alone! She’s just too bloody close for comfort, well your comfort.. hers is being met, so why would she want carers in n out who won’t do exactly as she asks (we’ve got to work to times and laws).

Be firm, get adaptive aids, jug on a little table for her so she always has a drink, glasses need a string so they can’t fall, get a post box outside her feckin door if it stops her seeing it, clothes sat out at bed time so if she fancies starting to get ready she can, Alexa or clappers for lights, there’s universal remotes that have less buttons so she can’t bugger it up as easily, note pad with instructions even like if tv does this you do this.. and phone numbers for her friends if she fancies a chat.

You say she can’t walk from room to room how do you transfer her? We had a our Nanas folding scooter sat next to her chair, she was able enough to plonk onto it n do a few short steps still from the bathroom door onto the loo and back.. that magically came out after we suggested a commode (not permanently sat next to her chair but if she needed to go and we weren’t able to get over).

Be firm, yes she doesn’t want the help but you need help so there needs to be some give and take.

Also she’s more than likely entitled to the higher rate of attendance allowance.. Definitely see if that could be reassessed, then cleaners for you and her, possibly having her medication delivered (you can buy a smaller dose box and decant them so she can pop morning open n take them etc).