university /looking after mum (young carer)

[woodpeckers]

I don’t know what to do.

- My mum was diagnosed with with dementia in 2017.

- When she was diagnosed I was starting university in September and I had to commute (home and university not far from each other) back and forth from university and home to look after my mum/visit her in hospital (as she was going through psychosis).

- I couldn’t cope with it all (university, assignments, visiting my mum in hospital) so I failed my first year, didn’t make any friends,

- I was diagnosed with depression shortly afterwards.

- I suspended university because I wasn’t coping and I thought I could take the time to get better myself (with my depression) and see how I can manage/sort things out with my Mum.

- Right now things are at it’s worse. I’m finding it difficult living with my mum because I don’t like seeing how she is now. It makes me sad every time I think about how she used to be. All she does it just sit and watch TV all day and then goes to sleep. She will eat the same meal fried meal (chicken and chips) every day, which she orders from the takeaway so she’s now become overweight. Our house is horrible, no matter how many times I try to keep it clean or tidy it ends up a mess again, it smells because my mum doesn’t wash without prompting, and all the rubbish accumulating, it’s just horrible and a brief summary.

- I try to buy her new clothes or book her appointments to do her hair or encourage to see her friends but she always ends up cancelling the hair appointments, or cancelling seeing her friends and would prefer to stay inside and watch her programmes, again which makes me feel sad and guilty because I don’t know why, I hate her just sitting and being alone.

- I feel like I don’t have a way out. I feel like this is my life and there’s nothing I can do about it. I want to carry on with university but I don’t know how I can whilst caring and living for my mum. It’s difficult I can’t do it because I can’t cope with how she is now, and I get angry and frustrated all the time. I can’t concentrate on anything anymore, even taking my anti-depressants, I can’t take care of myself, can’t do anything anymore and my mum can’t take care of herself. I need someone to take care of me because I really don’t have the energy, strength or faith anymore to carry on.

-I want to move somewhere that’s far from where I live because I can be on my own, take care of myself and take my medication and get myself better and normal, and I’ll be able to concentrate on university and get my degree so I can start earning real money and support people properly, but whist doing all of this I’m still want to support my mum.

-She doesn’t want me to move or leave her so I don’t know what to do. And I even feel guilty for even thinking and looking but if I don’t then I’ll never have the life I want for myself e.g uni etc. so I really don’t know, I just feel im suppose to just care for my mum and not have my own life anymore and I just want some advice on what to do, I’m just at my last point now, even writing this I don’t know if it makes sense, if it’s enough, I’m just always worrying, always feeling like I’m going to have a panic stack, crying, feeling sick all the tome, just help.

again I’m sorry if this doesn’t make sense, and I hope you can help.

 

[Grannie G]

Your post does make sense @woodpeckers and it sounds as if your life is so demanding you really do need professional advice to help you start to try to make it better for yourself.

If you need to live with your mother it will make it harder than ever to bring some order into your life.

There are people here who have also faced insurmountable problems and I hope they will come forward to offer advice.

Meanwhile I can only suggest you phone the Helpline. They may be able to put you in touch with available help and support.



National Dementia Helpline

0300 222 11 22

Our helpline advisers are here for you.

Helpline opening hours:

Monday to Wednesday 9am – 8pm

Thursday and Friday 9am – 5pm

Saturday and Sunday 10am – 4pm

 

[kindred]

I don’t know what to do.

- My mum was diagnosed with with dementia in 2017.

- When she was diagnosed I was starting university in September and I had to commute (home and university not far from each other) back and forth from university and home to look after my mum/visit her in hospital (as she was going through psychosis).

- I couldn’t cope with it all (university, assignments, visiting my mum in hospital) so I failed my first year, didn’t make any friends,

- I was diagnosed with depression shortly afterwards.

- I suspended university because I wasn’t coping and I thought I could take the time to get better myself (with my depression) and see how I can manage/sort things out with my Mum.

- Right now things are at it’s worse. I’m finding it difficult living with my mum because I don’t like seeing how she is now. It makes me sad every time I think about how she used to be. All she does it just sit and watch TV all day and then goes to sleep. She will eat the same meal fried meal (chicken and chips) every day, which she orders from the takeaway so she’s now become overweight. Our house is horrible, no matter how many times I try to keep it clean or tidy it ends up a mess again, it smells because my mum doesn’t wash without prompting, and all the rubbish accumulating, it’s just horrible and a brief summary.

- I try to buy her new clothes or book her appointments to do her hair or encourage to see her friends but she always ends up cancelling the hair appointments, or cancelling seeing her friends and would prefer to stay inside and watch her programmes, again which makes me feel sad and guilty because I don’t know why, I hate her just sitting and being alone.

- I feel like I don’t have a way out. I feel like this is my life and there’s nothing I can do about it. I want to carry on with university but I don’t know how I can whilst caring and living for my mum. It’s difficult I can’t do it because I can’t cope with how she is now, and I get angry and frustrated all the time. I can’t concentrate on anything anymore, even taking my anti-depressants, I can’t take care of myself, can’t do anything anymore and my mum can’t take care of herself. I need someone to take care of me because I really don’t have the energy, strength or faith anymore to carry on.

-I want to move somewhere that’s far from where I live because I can be on my own, take care of myself and take my medication and get myself better and normal, and I’ll be able to concentrate on university and get my degree so I can start earning real money and support people properly, but whist doing all of this I’m still want to support my mum.

-She doesn’t want me to move or leave her so I don’t know what to do. And I even feel guilty for even thinking and looking but if I don’t then I’ll never have the life I want for myself e.g uni etc. so I really don’t know, I just feel im suppose to just care for my mum and not have my own life anymore and I just want some advice on what to do, I’m just at my last point now, even writing this I don’t know if it makes sense, if it’s enough, I’m just always worrying, always feeling like I’m going to have a panic stack, crying, feeling sick all the tome, just help.

again I’m sorry if this doesn’t make sense, and I hope you can help.

I am so glad you have come onto this forum. This is not your life and there are things you can do about it. I speak from experience similar to yours.
Please see your GP as soon as you can, and maybe even take a copy of your post with you because it sets the situation out clearly, including your despair.
Even the smallest of small steps towards your future is worth taking. Ask the GP who can help you to find a way forward for yourself and your mum, whereby your mum is taken care of, and you are free to be part of her helping picture but not all of it. Do you have the finances to actually move out and live at a distance and work for a while, while you wait to get back into University?
I am thinking initially of help from social services as your mum is a vulnerable adult and I know you love her and are a wonderful daughter, but it is not your job to take care of her in such a way that your own life is lost like this. You do not need to be sacrificed to this situation.
with warmest wishes, Kindred.

 

[Duggies-girl]

@woodpeckers you clearly cannot go on like this. You don't say how old you or your mum are but if you were attending university I would suspect you are young, early twenties perhaps and if this is so then your mum is probably relatively young for someone with dementia and if so this could go on for many years.

You also don't mention a dad or siblings so I am guessing that it is just you looking after your mum and sadly it's a fact that she will let you carry on looking after her as long as it is needed. She can't help that, it is the nature of dementia and your mum will become more and more self-centred as the disease progresses.

It is too much for you and as a mother I feel that you should not have to be doing this as a young person. I look after my dad but he is nearly ninety years old and it will end sometime sooner or later but I still find it hard to cope. I am not surprised that you want to run away as I often feel like that and there is no shame in that.

You must get help now by doing as others have suggested, see your GP, ring the help line and get on to social services today or tomorrow.

This is your life and you have to make the best of it. Don't let your mum's illness stand in the way of your chance of university and a good job in the future. I am sure your mum would not want that if she only realised.

 

[woodpeckers]

When I saw all your messages (and even an email) I actually cried. Since all of this begun, I’ve felt so alone. I’ve felt that this is my life now and everything I wanted to do I can no longer do; but reading your messages has given me some sort of comfort. I want to thank you all for caring enough to comment and help me, - really thank you, don’t know how all this means to me.

 

[woodpeckers]

@woodpeckers you clearly cannot go on like this. You don't say how old you or your mum are but if you were attending university I would suspect you are young, early twenties perhaps and if this is so then your mum is probably relatively young for someone with dementia and if so this could go on for many years.

Yes, I’m in my twenties and my is 54 and she’ll be turning 55 this autumn.

You also don't mention a dad or siblings so I am guessing that it is just you looking after your mum and sadly it's a fact that she will let you carry on looking after her as long as it is needed. She can't help that, it is the nature of dementia and your mum will become more and more self-centred as the disease progresses.

I’m an only child and so don’t have any siblings. I don’t have any relatives that live near by (they all live abroad) and I’m not that close with my father.


It is too much for you and as a mother I feel that you should not have to be doing this as a young person. I look after my dad but he is nearly ninety years old and it will end sometime sooner or later but I still find it hard to cope. I am not surprised that you want to run away as I often feel like that and there is no shame in that.


You must get help now by doing as others have suggested, see your GP, ring the help line and get on to social services today or tomorrow.

My mum has a social worker but in the past I’ve had such bad experiences with social workers and getting my mum help and support, but I will talk to the social worker my mum has now and tell her how I feel. When meetings happen, I don’t like to talk about myself or how I’m feeling because they’ve come to see my Mum, not me, lol that’s how I feel.

This is your life and you have to make the best of it. Don't let your mum's illness stand in the way of your chance of university and a good job in the future. I am sure your mum would not want that if she only realised.

Thank you, that’s all I want it a good job/career and a happy future where I can look after everyone and everyone to be happy. I just feel like I’m not destined to have that happen to me.

 

[Duggies-girl]

When I saw all your messages (and even an email) I actually cried. Since all of this begun, I’ve felt so alone. I’ve felt that this is my life now and everything I wanted to do I can no longer do; but reading your messages has given me some sort of comfort. I want to thank you all for caring enough to comment and help me, - really thank you, don’t know how all this means to me.

@woodpeckers Talking Point is a safe and good place to come, you can rant and say whatever you feel. I know it is only words that you read on here but it does help and can make you feel less alone. Everyone on here has there own story but still they will find time to try to help others because we all know how hard it can be and it is good to just share your feelings with others who understand.

Do keep posting and please do try to get some real practical help because you sound as though you are reaching the end of your tether and that is no good for anyone.

 

[woodpeckers]

I am so glad you have come onto this forum. This is not your life and there are things you can do about it. I speak from experience similar to yours.
Please see your GP as soon as you can, and maybe even take a copy of your post with you because it sets the situation out clearly, including your despair.
Even the smallest of small steps towards your future is worth taking. Ask the GP who can help you to find a way forward for yourself and your mum, whereby your mum is taken care of, and you are free to be part of her helping picture but not all of it.

Do you have the finances to actually move out and live at a distance and work for a while, while you wait to get back into University?

As it stands now, no I’m as broke as ever lol. I haven’t been able to work with everything going on, as I would find it difficult maintaining a job. But if I do go back to finish university, i’ll have student finance to help me with living costs etc.

I am thinking initially of help from social services as your mum is a vulnerable adult and I know you love her and are a wonderful daughter, but it is not your job to take care of her in such a way that your own life is lost like this.

My mum has had various social workers. Most of them haven’t been great and haven’t done anything to help improve the situation. My mum has a new social worker at the moment, I will talk to her about how I’m feeling when she next come. To be honest, it’s been my fault because I’ve been let down and disappointed with social services so many times, I’ve de attached myself and whenever they’re around I just avoid them and go out or stay in my room.

You do not need to be sacrificed to this situation.
with warmest wishes, Kindred.

 

[Duggies-girl]

I have just read your reply @woodpeckers and 54 is no age for your mum to have dementia and as I said before she could go on for years slowly getting worse. That is no life for you and nobody should expect you to do all the caring.

Yes you must tell your mum's social worker how you feel or she won't know. From what I have read on here the social services will be happy to just let you carry on caring for your mum as long as you are able too because it makes it easier for them and it is cheap.

I am guessing that your mum has had a care assessment but I think that you are also entitled to an assessment as a carer and if you get one you need to make it clear that you cannot go on. It is not your responsibility to look after your mum or even your duty as a daughter. Some people can manage but you sound as though you can't and it is perfectly okay to not want to do it. I don't want to do it but as I said dad is old and it will come to an end sometime so I plough on because I am able to at the moment.

You will have to be strong and insist that help is put in place for your mum. You say that you don't get on with your dad but does he still live at home with your mum, if he does he needs to take the responsibility from you, if he doesn't then I don't suspect he will be of much help.

Take all the practical advice given on here and make sure that they understand that you cannot and importantly, will not carry on with this.

You count too.

 

[Woo2]

Hi @woodpeckers . I can only agree with what everyone else has said , you must talk to someone to get some help , you can’t go on as you are and nor should you be expected to, I would not want that for my daughters , you have a life to live . Please do ring the helpline , also the Admiral nurses were great for me . This is a fab site , everyone is helpful and encouraging and if there is nothing practical that anyone can do they listen and understand. Thinking of you and hoping you can get something sorted soon. Sending you a big hug ,you aren’t alone here . X

 

[witts1973]

Hi @woodpeckers I'm sorry to hear about the situation that you find yourself in,I'm sure you will find some help and find a way forward,it's awful looking at a loved one that has changed in this way it's very sad,I wish you all the best,you will find better days,I hope your GP and social services will be able to offer you some support,I believe there are charities/groups of people that you can approach as a young carer and will find somebody that you can talk things through with,I wish I could do more for you,all I can say is that I'm touched with what you have written today,probably more so than anything I have ever read on here.
Before my mother got any help I was looking after her single handed and stopped talking to my friends,lost 2.5 stone,unplugged the home phone,switched off my mobile and was on the verge of a breakdown ,once I got help for her I was able to breathe again,although it was easier for her to get help as she lost her mobility.
I'm glad that you have joined this forum for help,you're still young and you have your future,universities will be sympathetic when you find the right time and they hear what you have been through.

Best wishes...x