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How do I cope? - Carers UK Forum

How do I cope?

Tell us a bit about yourself here.

I am in a weird position of being a former carer to my daughter, and the caree of my husband. I predominantly suffer from mental health problems.

I am really struggling at the moment, to the point where I am fighting suicidal thoughts (fusing all my usual aids; tslking to others, deals with voices, distraction bag etc.).

My 18yr old daughter suffers from Ehlers Danlos Syndrome, and Total Autonomic Failure. We have accepted in the abstract that she has a life limiting condition, but assumed she would have at least another couple of years. However, her condition has recently begun to deteriorate significantly, and apparently she is developing the early signs of 'Locked in Syndrome', which clearly is devastating for us all.

She is a very angry young woman (I understand that, she is in constant severe pain , and has missed out on all of those things that young women want to do, she inherited the faulty gene from me), she hasn't spoken to me since last autumn, and has informed my husband that despite everyone being aware that her time is very limited now, she does not and will not speak to me.

I am really struggling with this, it is having a huge impact on me, I had just started making some real progress in fighting severe depression, and now with the knowledge that my daughter is still rejecting me I am really struggling to cope, time has nearly run out for us. I can't describe the pain. How do you live knowing that someone you love so much is living in a hell (what could be worse than being cognitively alive and aware but with total paralysis except for the eyes).

I feel so guilty. How do other carers deal with the inevitable death of the caree?

Many thanks xxx
Hi Sally, I cannot answer your question I'm afraid, I care for a 34 year old son with severe learning difficulties and an elderly mum. Your situation is so, so difficult. Has anyone sat down and talked with you about your daughter's illness and how it makes your feel? Perhaps someone from a hospice, or a counsellor? None of us choose our genes, or know what we have inherited, we should not be blamed for what we pass on to our children.
((((((((hugs))))))))) Sally
What an awful situation to be in, it must be a nightmare for both you and your daughter. How is your husband taking this? Is there anyone else you can talk to? I assume that your mental health team know how hard you are finding this and are aware of your suicidal thoughts. I have recently been in the position of being blamed for my husbands condition and it comes as a terrible shock - even if you know its untrue its easy to believe it.
Please, please believe me when I say that you are NOT to blame for her condition, you didnt choose this and couldnt have known about it when she was born.
Hi Sally, I don't have any useful advice I'm sorry, but I just wanted to post and say how sad I am to read about your daughter and to tell you that you really should not feel guilty at all you are a loving Mum. Sending you hugs xx
Hi Sally,
I would recommend that both you and your daughter look at EFT, it is a system of tapping various acupressure points to relieve symptoms of both emotional and physical distress. Someone could tap on your daughter if she is unable to do it herself.

It sounds like you have all been through a lot of Truman and need to help yourselves now.

You obviously did not deliberately pass on the faulty gene to your daughter, so guilt in that respect would seem misplaced and very unhelpful to both of you.

Is there a support group for families experiencing these conditions?

You can do the eft right now, yourself, look it up on the Internet, it is very simple and effective.

Kind regards
just wanted to say welcome to forum.
Hi Sally,
How very dreadful for you. I just wish you strength to get through this. Can your doctor direct you to any professional help as your situation is so serious?