Mum is getting more and more demanding and I’m becoming a person I don’t like. I’ve found myself shouting at her - sometimes in a complete rage. I need her to go into respite to give me a break, just a week, but she refuses and social services have said because she still has capacity they can’t force her. I’ve had almost 3 years without a full nights sleep and it’s taking its toll. Sorry to come on here just to let off steam but I have no other outlet and my mental health is going downhill fast.
Talk to your GP about how you are feeling, asap. Have Social Services completed a formal Carers Assessment for you, and Needs Assessment for mum? If you would like to tell us how much care she needs, and demands (may be very different!) we may be able to offer some suggestions.
It’s OK to say “I’ve had enough” here. I know that feeling too well, myself. I have met my own breaking point, so have others here.
Does mum really have capacity?
My GP I’d a complete waste of time but I’ll try again.
Mum needs 24x7 care. She’s had a needs assessment and they put me down as her main carer but provided morning visits to wash and dress mum and initially evening visits to get her ready for bed but I cancelled those as they kept turning up at 11pm which was far too late.
Mum has capacity in terms of knowing what day of the week it is and how much she has in the bank but she can’t seem to realise that it isn’t right to shout me to help her to the commode then as soon as I’ve sat down shout that she needs her glass filling then 2 minutes later shout me to tell me (not ask) to move the empty glass. She’s been using the commode then 10 minutes later saying she needs it again - day and night. District nurse has referred her to bladder services but it’s an 18 week wait at the moment.
I’ve got so angry but then sat down and cried. I know if anything happened to her after I’d been so vile I’d never forgive myself but I’m struggling to control it.
Thanks for listening.
It sounds like you are understandably suffering from compassion fatigue.
If your Mum cannot be persuaded to go into respite, could respite come to her? Increased care visits. Perhaps for a weekend first whilst you are away. This could be enough to persuade her she’d be better in respite with 24/7 care.
Have asked for that but the local council don’t provide waking nights anymore and have said their only help would be via respite.
I looked into paying for a few days privately but the cost was prohibitive.
We are all human at the end of the day. It very much seems like you need your needs assessed asap, it is your right as a carer to get some much needed support. You need respite to charge your batteries and will do you good to get that rest you so deserve. Can social services come in to take care of her while you take a break from care, sending lots of support your way you arent alone.
Oh referrals are a joke im waiting on about 3 in the last 6 months
They told me two years ago the needs assessment was an 18 month waiting list … I’m still waiting to n the words of Diana Ross.
Oh i didnt know that all thou it doesnt surprise me milev1. Its a terrible situation and there really should be more support out there, but there are always barriers. All here for you.
Hi milev1, I know what you have been through, best thing when seeing the gp, tell the truth and tell them that you feel like you’re going to hurt yourself but also that you could lose your job or feel like if you are afraid of falling asleep at the wheel if you drive. I know it sounds wrong but sometimes you need to tell a few home truths to get help to make them understand and maybe chat to the police for help as well.
Yes i agree you really do have to lay it on thick and tell them exactly how it really is, i had my carers assessment a few weeks ago and i just laid out the bare true, it has taken me along time to say…im not ok and i need support, you have to be your best self and look after you aswell as your loved one, (i really do need to take my own advice" says the women that NEVER puts herself first.
Ask again for a Carers Assessment. Point out how long you’ve been waiting and that the Local Government Ombudsman has made it clear that it should take no more than 6 weeks. It might help a bit.
Hard to add anything to what has been said but thinking of you . Being constantly on call with no respite long term must be exhausting.
I am sorry you did not have much help from your GP . Is it worth trying to see another one and stress how exhausted and close to breaking you are? Even say that you are going to book a weekend away, and that they have a duty of care to make sure your mother is safe. If you have a local Carers Support group, may be worth talking to them and I think sometimes they MAY be able to expedite things with Social Services but it will vary from area to area.
I agree care visits at 11pm are a total nightmare. Please let us know how things are going as many if most of us have come close to breaking and we wont judge and will understand.
I had no idea about the 6 weeks - will phone again Monday and use that tactic. Thank you.
One person cannot care 24/7 long term.
There appears to be an assumption by everyone involved that you are always available to care. No one can be forced to care, even a wife for a husband in the same house. You desperately need a break.
Can you explain a bit more about her disability and what she can/cannot do?
Thank you to all who have replied. Feeling a little better this morning although still down but I know I haven’t been. ‘Judged’ . I’ll let you know how things go with social services / GP. I know the district nurse is getting on to them as she saw me snapping at mum and said it was clear I wasn’t coping.
Just be careful snapping to much in front of other as they will get safe guarding team involved who should help you get some help than leave you to suffer depending who handles it, just don’t snap in front of them.
Mum is more or less bed bound. She also has limited vision and some hearing loss (but refuses to have a hearing aid). Her condition (non insulinoma pancreogenic hypoglycaemia) means that her sugar levels are almost always low and as she hasn’t eaten solid food since being admitted to hospital 3 years ago it means her calorie intake is all liquid which along with the water tablets she’s on to prevent fluid around the heart means she requires the commode almost hourly day and night. She has the commode by the bed but couldn’t manage anything by herself. During the daytime she can see enough to make out the lucozade bottle and fill the glass herself (bed table/trolley by the bed) but at night she needs me to do that too. If she sleeps for too long and doesn’t have enough lucozade it generally results in a hypo and she’s no longer hypo aware. That can result in seizures etc if not resolved quickly.
I think my own guilt over having gone to work the day she ended up on life support , even though I knew she wasn’t too good , has made me even more reluctant to seek more help.
It sounds as if your mother needs 24/7 care and you cannot be expected to provide this. You will have a total breakdown if you try to continue. It sounds as if she is not going to improve. TBH it sounds as if she needs to be in a Care Home. I realise this may not be what you want, but YOU matter too. With regard to her no longer being hype aware, this to me indicates she needs a nursing home and medical supervision.
I am glad you are feeling a little better today. It sounds as if the DN is on side? I really would urge you to look for your local Carers Group and talk things over with them.
What I’m about to say is going to hurt, I’m sorry but I really feel I need to speak up for YOU and say it…
from what I know (I’m not a medic but both my parents were doctors, and I’ve cared for Dad through to his passing) someone like your Mum who has that many issues, especially about ‘nutritional intake’ would benefit more from a Fluid line at night because she needs sleep but is unaware of how low her sugar levels get.
I’m sorry because I know you think this is about how ‘good or not’ you are about caring for her but in my humble opinion could this be your guilt making you think you should do it rather than ‘releasing your Mum’ to the care where she can receive overnight care that’s easier for BOTH of you, she can get sleep and so can you…I’m SO SORRY to put it like that but, I had to share that when I read about you giving her lucozade to manage her sugar levels overnight it seemed like a very small sticking plaster on a larger issue of unpredictable seizures which you said you know occur if she doesn’t get it…
Knowing what guilt can do to drive my own actions, I’m strongly urging you to REFRAME your situation to think about her needs and comfort in terms of facilitating quality, ease of her movement, and comfort of her daily living situation and LESS about your ability to do everything to keep her ‘safe’…
This is one of the hardest things to do. It also means change. Change is uncomfortable and can mean you decide not to do it. BUT investing and rethinking this COULD make things better for HER and you. Please do me the honour and peace of mind, to think about what I’ve shared.
@Milev1 I’m sending BIG BIG empathetic hugs, and I hope you’ll forgive me for that reframe. I had to speak up for you though. YOU need something to change for you, but YOU are self-perpetuating the situation thinking safety is the only thing she needs.
I’m not judging but offering heartfelt knowledge and experience
I just wanted to add - this may be a good way to reframe things to the GP and the DN and everyone else…for them to consider your Mum’s safety, quality of living everyday…in this way it’s less about what you CAN or are ‘willing’ or ‘should’ (all terms I hate) and more putting the focus on your Mum’s ability, safety and what ELSE she could get/do …