Thanks @Denis_1610 for reminding me - I meant to say @ontheverge this seems to be happening periodically to members. Email membership@carersuk.org so they are aware and can sort this out for you.
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Sorry all. It asked me to change my password on my laptop which I did. Then it wouldn’t let me log in again so I changed the password a few more times but it still wouldn’t work. In the end, I emailed the membership email and am waiting for a response.
Strangely enough, I can still get on when I’m on my mobile. Unsure how that works but at least I can reply.
Will reply to your other messages once
I can get on using my laptop. Apologies for any spelling mistakes and grammatical errors.
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Thanks @Melly1 for helping me get back on here. Much appreciated.
I hope you are all keeping well.
Mum is struggling to stand up from the sofa so I have to be on hand to help her up and then I’m her walking zimmerframe. It’s really hard work and it’s bad when I have to go into the office once a week. I have to leave her at home with “shouty” (the brother who is very abusive to her).
The occupational therapy appointments have ended. They’ve said she is absolutely fine 
We had another appointment at the arthritis clinic. They’ve said her right knee has lots of fluid in it and want to give her injectable steroid. She flat out said no. I’ve tried speaking to her since but she’s just refusing. They said they could give her some higher dose drugs (one is something they use on cancer patients) but she said no to both.They would need to do regular blood tests and Mum can’t go to the GP. Going to the hospital was bad enough. It took us 30 minutes to walk from the house to the taxi which is at the end of the street. What a nightmare.
She’s not eating much which is stressing me out.
I am still changing the diapers every other day, and she’s had a few more accidents in bed. Those bed protectors and those other things are not too good as it seems to flow right through and onto all her other bedding. I got into an altercation with “shouty” because he keeps yelling at her when she has an accident. I’ve told him, don’t you do anything if it’s too much hassle, I will do it.
“dopey” (lazy sister) and “queenie” (queer brother) do absolutely nothing. They are fixated in their own little worlds and do absolutely nothing.
Sometimes I feel very suicidal. I feel like a failure and I have no life.
Sorry, this is not a pity post. I’m just so fed up and so tired. Boohoo!
@ontheverge
You most certainly are not a failure. You have been failed by your family and OT.
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Time you went on a week’s holiday and left it to them, or better still 2 weeks. Lazy rotten so and so’s.
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You are simply burned out. Mum isn’t the only one who has the right to say No. Mine was the same. Does your mum have a lightweight wheelchair? I had to get very fierce with my mum. She asked me to go with her for a hospital appointment. I’d just had a gynaecological repair, then on arrival she told me to get a hospital wheelchair for her! The only one I could find needed the tyres blowing up, mum was a big woman like me, I was so worried about ruining the surgery I’d just had. Mum knew about it, was I just a chair pusher to her? Once home I refused to take her out ever again until she had her own LIGHT WEIGHT chair. You have an equal right, and must use it before you are too ill to carry on. If you don’t stick up for yourself, no one else will!
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Hi @ontheverge
it never seems to get any easier does it?
Helping your Mum up off the sofa and being her Zimmer frame is no good for your joints and back. If your Mum struggles to get off the sofa she needs a chair that she can get herself up of and she should be using a Zimmer frame not you to move around. This IS the remit of the OT - tell them your Mum has deteriorated and needs another assessment.
@Chris_22081 knows more about floods and flood barriers than me, have you tried his many layers approach. I think your Mum would flood less if she changed her pads more frequently. I’m with @bowlingbun on this one - I think you need to try being firm. Tell her it’s not fair on you as if she doesn’t change them more often you have to strip the bed and do all the washing. I know you don’t want to upset her - but your wellbeing as important as hers.
A light weight wheelchair would be a good idea for getting her to and from places and might be a good way to persuade her to attend necessary appointments.
I agree you need a break - how about a night or two in a travel lodge like you used too? I know you worry about your Mum but if you have a breakdown she will be at the mercy of your siblings/ need care workers for a lot longer.
If you feel suicidal please contact the Samaritans Contact Us | Samaritans
We know this isn’t a pity post - you are just stating how it is.
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My mum had a “rise and recline” recliner arranged by an OT. Her back was desperately bent, the worst OT’s had ever seen, so the OT arranged one with three “waterfall” cushions horizontally across the back of the chair. With stuffing adjusted, mum had support for her neck and lower back, and space for the curvature of the spine. Mum used it until the day before she died. Whenever I saw her use it the words of the kids song came into my head. “Tip me up and pour me out”. As mum stood up she could stand and reach for her wheeled Zimmer frame, which had a basket across the front for glasses, tissues etc.
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Hi @ontheverge @Melly1 mentioned my ‘many layer’ way of dealing with floods.
Basically I have a waterproof mattress cover on the bed - on top of this I put a disposable bed pad - then the normal sheet. Next a washable bed pad (not that cheap to start with but saves lots as things go on) Then one or two disposable pads. G sleeps with a pad as well but sometimes his flood overwhelms this completely. Last night was a case in point and was the worst in AGES, resulting in a complete change. Oh we also have a waterproof cover on the duvet so if the cover gets damp/wet that protects the duvet itself. Today even that cover went in the wash…
All that sometimes seems a bit of overkill, but the top pads don’t need replacing unless there is a problem so they last at least a few days (washable one about every four days or even a week). The lower ones only get replaced if disaster strikes.
Hope this explains the way I manage things.
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Oh I completely flipped out today. I’m tired, exhausted and can’t cope. Other than “shouty” who helps a hit, no one else does a thing.
I feel really bad for my Mum as I will eternally feel sorry for her due to her abusive husband (sorry, I will never call him Dad, he was an evil monster) but there is only so much one person can carry.
There are four of us at home and Mum. Mum is more or less a cabbage. She can’t do a thing on her own. Her arthritis in her hands has knackered them and the arthritis has made her more or less immobile. She can’t hear properly and she is slowly losing her mind.
“shouty” will do things but he will shout at Mum and me and everyone else. He has a long term health condition so I generally give him some slack but recently, he has just carried on a bit too much. I have to rely on him when I have to go to work so he does support me in that way but he does shout at Mum a lot.
“dopey” lives here and does the bare minimum - I’ve always suspected she may have some form of autism or a learning difficulty but even then, she will do things she wants to do and enjoys but acts like a re*ard when it’s something that involves her actually doing anything. Like today, she went shopping and to the library and what not - absolutely fine, go out and enjoy yourself. She then came home, rushed up to her room and didn’t come down until it was time to eat and then shot right back up. I’m not saying she needs to do as much as me but she just refuses to do anything. She sits there and looks into space or just acts silly. I know people have different forms of illnesses and I am not minimising anything but you can’t miraculously become silly when it comes to anything housework related. She normally goes and stands in the corner of a room when it comes to cleaning so she doesn’t have to do anything. It’s like she is playing musical statues when it comes to housework. She’s close to 50 I believe and hasn’t cooked a meal in her life. Mum and I have carried her all her life. She is not “general needs” as we say at work. I wish we could put her in some form of supported living and I never have to see her again.
“queenie” set me off today. They don’t live here but come to eat and spend most of the day here. They shout at Mum, are generally really nasty and whinge and complain about everything. They recently went to meet numerous men in London and they have some men they see in Manchester. They are off on another sex-scapade abroad and it set me right off. They come here, do absolutely nothing and act like they are the best thing since sliced bread. Mum is petrified of them and I believe there is some form of domestic abuse. They are capable of doing everything but refuse to do a thing. What they do in their spare time is up to them but ffs, help out a bit at home and stop shouting at Mum. We are not allowed to say anything against them, Mum always jumps in. I don’t understand the dynamic. They abuse her and she sticks up for them. I’m sick of carrying them. I told Mum today that if they go abroad again to meet men and then expect to come back home and return to the “routine”, I am moving out. They will do nothing at home, and I don’t think “shouty” will be able to cope so I’ve told her you better think about getting some carers booked because I am not running around after you anymore. She started tearing up and I felt awful but I am not the male version of Cinderella and it’s not just for me to do everything (help her up, put her socks on, massage her legs and feet, cut her nails, brush her hair, help her up, help her sit down, cook, clean, wipe her, help her to the toilet, take diapers on and off, help her dress, take her to the GP and hospital, hold her hand when she is stressing out, do her washing, check her bed if she has had a doofer, buy her hand warmers / clothes / tena massage thing / food she can eat or drink, change her if she has an accident - I could go on and on and on) for her whilst others sit around and do nothing. Sorry not sorry. I’m fuming!
Do you remember the downstairs bidet/shower we have had planned for the last few months? None of the siblings will pay for it and told Mum she would need to pay. I stepped in and I said I would foot the bill but I am not getting involved in anything else. “queenie” was supposed to take charge after we had a family meeting. They did nothing. They passed half of it onto another sibling who does not live with us (he had to go and order everything and get plumbers/decorators to come and look and give us quotes) and the remaining went to “shouty”. During that time, “queenie” went on two sex-scapades. They can plan things when it benefits them but when it comes to anything not about them, they don’t care.
PS. Before anyone starts, I am not homophobic or transphobic. My best friend is gay and he told me shoving penises into your mouth is delightful. “queenie” can pop as many into their mouth as they want (or wherever else) but they can’t come here and throw their weight around and act like a little girl. I’m not having it anymore. Either they go or I go.
Today I feel bad because Mum is now distraught. I thought I won’t do anything for her today and she’s really struggled. Whilst she was trying to get to the commode, she fell and hurt herself. She then fell again and no one put her feet up between 5pm and 6pm on the recliner sofa.
“queenie” did nothing but mince around and finalise their trip abroad. They do not give two hoots about Mum. It’s all me me me and the men they are carrying on with.
“dopey” sat in her room as she always does.
“shouty” made her a cup of tea and told her off for some reason.
I couldn’t be bothered cooking and no one else flinched so in the end, I got a takeaway for me, her and “shouty”.
Once I move out, I’m assuming she will need carers. How do we get the ball rolling?
On the one hand I am devastated because I do everything for her and I feel like I am neglecting her but at the same time, I am being mentally, emotionally and financially abused and I’m not doing this anymore. I read that post about the lady whose Mum died and I will be torn if anything were to happen to her and I wasn’t around but I’m stuck, and I need to escape.
Nothing will change until you force change I’m afraid. The rest of them sound utterly useless.
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After my meltdown the other day, Mum’s fallen three times and just sits quietly and doesn’t talk. Looks like my thoughts of escaping have gone. I’m trapped for life!!!
Ontheverge, does she need checking over.
It’s time to have a Needs assessment for her, professional carers coming in to help with her personal care, witness your hopeless siblings and take some of the pressure off you.
I know it’s not what she wants - but she might actually find she prefers professional carers doing her personal care to her son doing it.
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How much do I need to pay you to come and convince her? In her mind, she still seems to think she can do it but she can’t. Mention carers and that’s it, she just completely closes off and ignores me.
I had to change her upper underwear today. It was embarrassing for us both but I guess that’s what you have to do when you have two idle useless sisters.
I wish there was something we could do to slow down her arthritis because she is finding it harder and harder each day. I even have to brush her hair.
Sorry about my meltdown last week. Everything got too much for me and I lost it. Why did I have to end up with the most selfish idle siblings!!!
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It’s time to start making a list of everything you are doing for mum, and keeping a diary.
Talk to the “Continence Nurse” at the GP practice about mum’s “accidents”, repeatedly falling over.
Does mum live in a rented property, or does she own the house?
Mum clearly has what I call a Selective Memory, remembering some things, not others?
What will happen after mum dies to your mum’s home and your siblings?
Has she made a will?
I know these are difficult issues but they clearly don’t want to help her, but live there for nothing?
Hi BB. She was discharged from the continence service because her accidents were not as severe to trigger anything. We had to do a diary of her #1s and #2s but it wasn’t good enough.
Mum owns the house. She has got a will. She is a Muslim so will be sharing it out two portions to the boys and one portion to the girls. I’ve told that if the oldest sister (estranged and doesn’t do a thing for her, lives 5 minutes away and has not been over in 15 years) or the gay/transgender one (completely useless, he has just got penis on his brain and chases around after older men doing everything and sundry for them) get a single penny, you can remove me from the will, I don’t want anything and I won’t accept anything.
When Mum passes, I will pack my bags and run and never come back. The siblings are all over 45 so will need to fend for themselves. The dopey sister with possible autism is going to be well and truly f*****. She’s had years and years to learn from Mum - cooking, cleaning but she just can’t be bothered. None of my siblings give a hoot about her so she will really struggle but that’s on her, she’s close to 50.
As awful as this sounds, I’ve already packed most of my things. I don’t expect Mum to go in the next year or two but when it does happen, oh I will RUN!
Mum is like an old toddler and acts like a brat at times. There have been times when I have just wanted to give her a good shake and / or slap her but have had to calm myself down.
Forgot to say, the downstairs toilet/shower renovation is finally done. The gay/transgender one was meant to be in charge but decided to go to Turkey for another sexcapade a few weeks ago, so me and the “shouty” one had to be at home when the builders came.
Mum’s petrified of using the bidet but is reluctantly giving it a go. Now I need to convince her to have a shower although how that’s going to happen is beyond me.
Does anyone have any suggestions to encourage Mum to let me change her diaper every day? Currently she only allowed me to change it once every two days but the day it’s not changed, it’s soaked. The smell goes into all her clothes, the throws (or is it throes?) on the couch, on the couch and everywhere else. I’m going through two to three Febreeze/Airwicks a week.
At night time, after she’s been to the loo, she puts the soaked diaper on (on the day it’s not been changed) and then it leaks all over the bed. I’ve no idea why she does this. I would rather she just do a fresh wee in bed, the smell is so much easier to get out. We are burning through loads of disposable bed liners and the washable ones still smell of urine after they’ve been washed thoroughly.
Any suggestions or advice? I can’t speak to the incontinence clinic because they discharged her. It’s not serious enough they said!
Hi @ontheverge does your Mum still have mental capacity in your eyes? If so, I’d tell her what you’ve told us here.
Do you know why she is refusing to change them regularly? Is it perceived cost, or because she thinks she is saving you time by not having to help her change them every day or because its difficult/painful to change them or some other reason?
This is where professional carers would likely have more luck than you, if changing her pull ups daily was in her care plan. They would come in, and get her change them whilst helping her with getting up and her personal care. I know she doesn’t want carers, but she needs them and so do you to take some of the pressure off.