I am 60 and have been caring 24/7 for my youngest daughter, now 25, for 21 years totally alone
She Has had chronic and untreatable Crohns since the first day and we have survived every type of horror, bad doctors, child protection when said doctors got it wrong, fighting every day to keep her alive.
Since her last surgery she is getting well thank God, but she is tearing me apart.
Every day a new criticism, every day I’m more stupid, more difficult, the reason for everything bad that has happened.
We just had the biggest row on the ward with everyone listening to whT a rubbish mum I am and a wise human being.
I found i have dyspraxia only 3 years ago and she goes on and on and on about how it messes up everything and caused her life to be so awful. Tonight i couldn’t take any more and walked away.
I’m sitting her feeling messed up, worrying about her op tomorrow but too sick at heart to face more of the same.
Hi Margaret and welcome to the forum.
That must be so very hard on both of you. I’m hoping that someone else on the forum will have some experience of either or both conditions, as I have none.
At the moment you re probably both scared and upset and have both endured so much for so long, although from different perspectives. Your own recently diagnosed condition may have made your daughter realise, at some level, that you are not the healthy, coping and completely capable supporter she has always known. You too are subject to ill health. That’s scary for her.
Everything combined, (and I am so sorry for her having had this painful condition all her life), has made her lash out and you are the obvious target because deep down she knows you are not going to desert her.
The walking out may have been a bit of a warning signal to her but maybe she will react badly again.
Once the current crisis is improved, I would like to suggest that you both need to have regular breaks from each other.
Does your daughter need 24 hour care and company.? (Please forgive my ignorance). Do either of you get out, meet with friends? What would need to be in place for that to happen, if not?
Have you considered or have anything planned for 10/15 years time, when you may be too ill yourself to care for her? I’m not wishing anything on you but who knows what the future holds.
If you’d like to explain a little more about what help, if any, you have in place, what support, if any, you have and what you would like or need to be put in place for you both, hopefully members can point you towards the way to obtain it.
In the meantime I hope the op goes well for her.
Right now she is safe and cared for, Try to sleep and relax for a while.
Kind regards
I’m sure you and your daughter are both sick and tired of all the stress and upset the Crohns has caused, but IT’S NOT YOUR FAULT!
It’s not your fault that you have dyspraxia either (my son has this too).
Is her dad involved?
Quite honestly, it’s time your daughter started behaving like an adult, I suspect that you have been forced to stay together far more than you would have done if she didn’t have this illness, but whilst she stays with you, that mother/child relationship is going to keep going, and it’s not doing either of you any good. It’s time the apron strings were cut.
I’ve had major surgery and know how tough it can be, but I managed to support my son with LD and an elderly disabled mum even when I had a new wound/scar right across my stomach! I’m NOT suggesting that you dump her, but you both need your own space now she is supposed to be an adult.
Maybe set a target, “a year from now” things are going to be very different. She needs to be in her own place, and you get some peace at last.
If my brain damaged son can live in his own flat with carer support, then so can your daughter.
The first part of this process is you recording her outbursts on your phone, so that you can play them back to her!
Are you getting any support from the hospital or Social Services?
Does your daughter receive any disability benefits.
We don’t have any support as her Dad left when she was a few days old. My mother used to but she passed away a few years ago, so we have been ‘us against the world’ for many years. I have never had a break but she has had periods when she worked a few hours a day, or went to lessons. I just sit and stare into space when I have the opportunity.
For the last three years she has needed round the clock care, and it has been an emotional journey too. Her struggling to make sense of having no life, and me struggling with exhaustion. For the last year she has been vomiting and in pain for most of the day and night. Since having strictures removed she is so much better, an amazing transformation, but that is when the third degree began!
I am empty and she seems determined to slice and dice me. For me to take all the blame, and she is so sarcastic and unkind. Sitting here knowing she has an operation tomorrow morning is a killer, but I just cant help any more. Is that cruel and wrong?
Its almost like she wants to blame the whole 20plus years on me, and I can’t take it any more. To walk away was the hardest thing ever.
I gave up work to care and get UC as does she, and PIP but only half because they said she is not as ill as she says. We have been to exhausted to fight that one.
You have reached the stage of being what I call a Clapped Out Carer.
You’ve done so much for so long there is, for the moment, nothing left. Do NOT ignore this feeling. It is time your daughter was cared for somewhere other than your place. I’m now 67, with dodgy health, my son lives 14 miles away, he comes home every other weekend, and we talk every day on the phone.
Your daughter should definitely receive highest PIP, she needs help to sort this out. NOT from you though. This must be part of her gradual total reliance on you.
Then, you need to tell the hospital they MUST NOT discharge her home until they have arranged a Reablement Package which does not involve you in any way. This isn’t asking a favour, they should do it without asking, only I expect your daughter will tell them “mum does that…”
Your age is now creeping up on you, and that is something you cannot control. I find it incredibly frustrating, but I just don’t have the stamina I used to. This, more than anything else, is why you must involve Social Services. Start by asking for a Carers Assessment and be honest about how desperate you feel.
I am so sorry to read about what you are going through. Being a carer, especially when you have your own health issues, can be so hard. You sound, compleltely understandably, worn out. You are doing your best in very difficult circumstances and regardless of what your daughter is going through she should respect you. Perhaps you both need a bit of space/time away from each other? Will the Council provide you with any emergency respite if you say how broken you are or is that simply not possible?
I don’t know if it helps but my father and two cousins all have Chron’s. My cousins (one in her 20s , the other 30) are managing to live relatively independent lives albeit with frequent hospital admissions and support from partners and/or family members. Work has been an issue but they are both fighters and very determined to try and get on with things as best as they can. As your daughter is still young I am sure this illness is very debilitating and depressing for her. Has she made friends with anyone else in a similar position? Has she talked to you or anyone else (a counsellor?) about her future plans ? Would she consider getting her own flat with care or is that not an option? Sometimes having a longer term plan makes the day to day more manageable?
I am so sorry you are going through this. It’s awful the pressure that illnesses can put on people and having no one there to talk to can make you feel awful. You have obviously been through such a lot together - I do hope things improve.
I know this won’t help Margaret, but remember the saying “We always hurt the ones we love the most”.
The first time my Mum (Vascular Dementia) told me she hated me, was when I told her I’d booked a chiropodist to cut her toe nails, she repeatedly told me how much she hated me in front of her carers, I went into my bedroom and cried. When I came back she was holding her hands out telling me how sorry she was, I think she knew how much she had hurt me!!
Your Daughter loves you, you’ve been her rock for so many years and now you are worn down she is scared.
Please take the advice from others and take a time out, maybe a few days apart will make your Daughter realise how much she needs you.
hello Margaret … I know what Crohns is but have no experience of it. I do, however, know PLENTY about adult daughters being hurtful and wearing you out. Some days my daughter ignores me completely. Other days she points out all my shortcomings, other days she wants everything in sight and she can ruin my day in minutes.
Last week she wanted to go clothes shopping and I agreed. Could have been a lovely day out but it ended with me saying “shut up, shut up” in a busy shopping mall. It all blew up because she tried some tunic tops on and they were too tight as she has put on weight so I suggested she tried next size up. She went off on one and was stomping around like a 12 year old. I came home drained so I know EXACTLY how you feel and I sympathise. She has learning difficulties, severe dyslexia and is on the autistic spectrum. Everything has to be on her terms or there’s trouble.
I don’t think I can offer you much in the way of advice only that I try and switch off when she’s like this and have learned that I can talk and explain, try to reason and stay calm but with her it doesn’t work. I know she can’t help it most of the time but sometimes i reach my limit and tellher to “shut up” but once I’ve said it I regret it. PM me if you like. Xx