Who am I?

My father and siblings (and my late grandmother) have been caring for my mum for 25 years. She has multiple sclerosis so to start with it was when she relapsed but it’s been progressive MS for at least 10 years and she needs us for absolutely everything. We have carers for some of the time but her needs dictate my life and my fathers life in particular. In the last few years she has regressed mentally to a mental age that we guess is around the same as a toddler in many ways which has really exacerbated the whole situation.

I have been supporting my parents financially, with my time, my physical health, my mental health (which feel irreversibly damanged) and putting my own future on hold for a long time.

I feel my future cannot start until my mum dies and my dad has her on a diet and exercise that might keep her here with a low quality of life for decades to come. This fills me with despair and then guilt.

I always wanted to be a mother and now I can’t imagine having another human being for whom I am responsible so I don’t even know if I want to have children any more.

I often wish I would die so I don’t have to face this indeterminate period of time when my life is hijacked by my mum’s illness. I’ve been to therapy on and off but whenever I have to come and look after her (especially longer than a weekend), it triggers my anxiety, depression and wish to die or for my mum to just pass on.

I have lost my compassion and resent and hate her. I’m not certain exactly how I’ll feel when she eventually dies but I suspect relief will be a significant part of it but guilt plays a huge part in my life now. I struggle to find joy much of the time, feel negative and cynical about the future and honestly believe I am likely to kill myself at some point because its too much or that I’ll end up with an illness myself that requires someone to help me at some point and decide to kill myself before I become a fraction of the burden she is to anyone else.

I want a partner in life but struggle to date (in all other respects I shouldn’t struggle except that my outlook has been so negatively altered because of long term caring and I constantly feel I have to keep giving to my parents). I try to set boundaries but there’s always a need and my siblings have ‘lives’ and families that give them the perfect excuse to do far, far less than me. I genuinely believe I would have found my own life partner by now if my mum was healthy and I really hate her for it.

The only boundary that works is to put continents between me and my family but I am scared about how I will be viewed by my big Indian family (and all the elder care and values that come with it) if I do that and if I can live with the guilt of it. I want to run away 99% of the time. It feels like the only out is if either me or my mum are no longer here

Welcome and thank you for such an honest and moving post; it must have taken a lot of courage to write it.

I can see your situation from both sides of the coin, so to speak (I was my Mum’s carer up until she died, still am my husband’s carer, and have health problems of my own) including the bit about wishing for the caree to no longer be here (and all the guilt that goes with that), to wishing that you yourself were no longer here (and all the stigma that goes with that). So I do relate to everything you’ve said here.

You said you’ve been in therapy on and off, how helpful did you find it? Did you have a good relationship with the therapist? What kind of therapy did you try? You don’t need to answer all these questions here, it’s more to give you something to think about. Perhaps the type of therapy/the therapist wasn’t the right fit for you. Maybe look around and see what else is out there. Just because one type didn’t work, doesn’t mean that another won’t.

Have you discussed how you are feeling with your GP? There is absolutely no shame in feeling depressed and anxious about a situation over which you have little control. Perhaps anti-depressants might help, or a course of CBT, or mindfulness… all things to consider.

It sounds as though you have a large family who are all involved in your Mum’s care. Would you feel able to take a bit of a step back, as it’s not all on you? Just to take a breather and recharge your batteries so to speak.

I don’t know how near end of life your Mum is with her progressive MS, as you say, some people live with this for many years before passing. But you could look into pre-bereavement counselling, as a way of helping you understand and come to terms with what you are going through.

Please keep posting here if it helps. We are all here to support each other.

You cannot go on like this. You are burned out, rightly so. You’ve all done too much for too long.

You say “she needs us for everything”. WRONG!

She needs someone, a nurse or experienced carer can do what you and your family do.
If you or dad became ill, she would need residential care, there would be no other option, surely it’s better to have extra care now to avoid that?

Has your GP ever discussed “NHS Continuing Helathcare”? Google this, and look at the “assessment checklist”.
Then ask the doctor to arrange a proper assessment.

Hi Sparky,
Welcome to the forum!

It’s so brave of you to be so open and honest about your feelings, emotions and caring situation. I do hope that you find this forum a useful support network. Please know you’re not alone, we are sure that many on here will understand exactly how you feel and offer support. Have you looked into the specific services in your area that may be able to support you? Perhaps your GP might be able to offer some advice to help support you. Also do you think having an open conversation with your siblings might be beneficial so that they can take over more caring responsibilities to give you that much needed break.

Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

Carers UK can provide information and guidance to unpaid carers. This covers a range of subjects including:
Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions

Also, Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.

You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK
Share and Learn: Share and Learn | Carers UK

I do hope that you find some of this information useful Sparky. Please reach out and ask questions.

Best wishes