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Been a carer for DD for 7 years, now she's much better I feel lost

(19 Posts)
mrsnonsmoker Wed 14-May-25 14:36:02

I am worried I am making very bad decisions here - I am early 60s, she's 22. At one point she was housebound due to a neuropsychiatric disorder. She suffered so much, I neglected older DD, I delayed my divorce which has had far reaching financial consequences, and I have just pulled out of a house purchase so as to remain near to her at her university.

So I am in limbo I sort of still need to be her carer; many of my friends like to say "oh she's better now then!" but if I step back too far the relapse could be devastating. But I also need to steer her to independence. At the same time, I am negotiating post divorce, and struggling to find somewhere permanent to live.

The other day it just hit me; having devoted every waking minute to her for so many years, I am scared to be without her. So now we are reducing contact, I feel physically sick. Is this something carers get? (Please don't come on if you want to talk about "letting her go" - she's going!) This is about me, from now on, are my feelings entirely natural or is there something worse going on with me?

Just for info I still work although I have no other family and have moved away from all my friends due to the divorce. I'm driving an hour each way to visit them! Older DD not local either but doing really well for herself smile

keepingquiet Wed 14-May-25 16:26:30

Change is challenging, but it's a part of life.
My advice is to not be so hard on yourself. You have a lot going on.
I don't think there is anything worse going on, whatever that might mean.
Find the things you enjoy and find time to do them. I don't know what they are but getting some enjoyment back in your life is vital- if I was your doctor that is what I would prescribe for you.

V3ra Wed 14-May-25 18:01:35

You're going to need to start to develop a social life of your own! 🙂
Do you have any interests or hobbies you would like to take up, preferably where you will meet other like-minded people?

It's no wonder you feel anxious after so many years of caring for your daughter, but it sounds like there's light at the end of the tunnel for both of you x

mrsnonsmoker Thu 15-May-25 18:02:14

Thank you both. Was thinking all this just today. @keepingquiet where I say "worse" I wondered if I had a mental health issue, I was so shocked by how bad I've been feeling. I spoke to another lady whose daughter has the same condition and she said she feels exactly the same.

I'm joining a carers' group for parents of people with similar conditions next week, I think I might see if they need volunteers too. Its all caught me entirely by surprise, when I divorced, determined to live alone, I think in my head I meant alone with my daughter and I was wrong to think like that.

Skydancer Thu 15-May-25 18:08:03

When you look after someone and they no longer need you it’s hard not to feel a bit lost.

Cossy Thu 15-May-25 18:23:29

Firstly, congratulations on playing a huge role getting your DD to this point.

I think when one has been a carer for so long it becomes like a comfortable (& comforting) habit and it take you time to adjust.

In terms of your older DD, have you spoken with her about how both you and she feel?

I don’t have answers, so just want to wish you and both your DDs well thanks

MayBee70 Thu 15-May-25 18:34:40

I’m sure that what you’re feeling is quite normal and understandable. I read once that people who have had to care for someone full time feel lost when they no longer have to do it even though they then have the freedom to open up their world. There’s also the worry of knowing that she might need you at any time if she has a relapse. Well done, though, for achieving what you and she have been aiming at for such a long time.

SaxonGrace Sat 17-May-25 14:31:06

I’ve only been a carer for my partner who lived around the corner to me for two years following two strokes, his family not me decided recently he needs to go onto a care home , they have had control of his finances etc most of that time. I’m now feeling a bit lost we did everything together and I must now start over. It’s not easy, so I sympathise but I tell myself every morning that I’m still breathing, mobile and not in a care home, I may be 75 but there’s still life left.

win Sat 17-May-25 15:13:13

I would say you are grieving the loss of being needed full time. It is very difficult for most carers to start what is essentially a new way of life. When your loved one dies after years of 24/7 caring there is an enormous void you have to fill. Caring relating visitors stop coming overnight it is all a massivechange,
Congratulate yourself on having got this far with your daughter, and although she still needs your support. This is your time to recover and enjoy life which eventually you will. You may always feel lonely in your home but I hope you will find lots of things to enjoy and perhaps even use all your learnt knowledge to support others. You are definitely on the right path, carers support groups are so beneficial to carers who despite their caring role often feel isolated, lonely and even depressed due to their 24/7 caring role. I wish you all the best with finding what you enjoy. flowers

Ph1lomena Sat 17-May-25 16:03:18

I've been a carer for my DD who has a severe chronic long term illness for 16+ years now and I do sometimes reflect on how lost I would be if a miracle happened and she recovered. I think in many ways you are mourning the change in your life, even though you still need to be on 'stand by'. It is recognised by carers support groups that ex-carers often suffer from feelings of loss and it will take you some time to come to terms with the changes in your life. It's important that you now do some things for you and put yourself first for a change. Perhaps you could also do some volunteering linked with your daughter's illness where you could put your expertise to good use? With regard to your other daughter, clearly it is a difficult situation and won't be resolved overnight. Why don't you right her a letter and explain your feelings and ask whether you could start to build bridges. Good luck.

4allweknow Sat 17-May-25 16:05:17

Your DD is becoming less dependent on you. you seem to be becoming dependent on her now. Probably all down to devoting so much time to caring. You'll have to learn to live a bit more for yourself

Allsorts Sat 17-May-25 16:08:33

You have been selfless and helped your daughter. You have been given good advice. What you feel is normal, now with little steps start to make a life if your own. I looked after all my grandchildren every weekend, was needed, saw family every day, now I have the odd phone call.

Allira Sat 17-May-25 16:21:40

Well done for devoting yourself to your DD and getting her to this point. I hope she continues to do well.

You will now have to learn to live a different kind of life, caring for your own needs, making a social life for yourself, perhaps pampering yourself too. It will take time but small steps at a time will get you there.

Chaitriona Sat 17-May-25 17:01:50

My daughter and I both contracted ME when I was middle aged and she was a teenager. She was bedridden for about twelve years and I cared for her though ill myself. Neither of us fully recovered but she became well enough to live independently and then met a partner whoi is very caring towards her.
What you are feeling is completely natural. And your daughter too will have to deal with the emotional issues of becoming better.

People will think you should just be happy. And of course you are. But there are many emotions to deal with. Grief for the pain and loss you have both experienced. Fear of relapse and the uncertainty and anxiety that brings. When you are a carer, however hard your own life is, you suppress it and you can have no doubt that the way you are living your life is necessary. Now questions arise. Who am I? Am I worth anything?
It is traumatic to see your daughter suffer so. You are now feeling delayed shock. And in your case you have extra issues with your divorce and your other daughter.
There are practical and financial issues.
You have to experience these feelings. Work your way through them. It is normal. You will be able to do this. It may take a little time and you may be suffering now but they will pass and you will gradually build a new life. I know it is hard. Counseling might help if you can access it. You have done well in caring for your daughter. You are a strong woman. My best wishes to both of you.

mrsnonsmoker Sat 17-May-25 21:19:10

Thank you all some lovely messages here, and accounts of caring and the loss when it's over, one way or another. I have seen carers whose relative has died be devastated they don't have the onerous responsibility any more but I'd associated that with older people with physical illnesses so now you are all saying its very similar it makes complete sense.

I am scared though. It feels like a loss as some have said, yes I can't just "get on" with things as she still needs me sometimes. I do have a counsellor, can only afford to see her once in a while but definitely needed.

mrsnonsmoker Sat 17-May-25 21:20:41

flowers for SaxonGrace and to others on this thread who have been caring for their DDs.

win Sat 17-May-25 22:55:30

mrsnonsmoker

Thank you all some lovely messages here, and accounts of caring and the loss when it's over, one way or another. I have seen carers whose relative has died be devastated they don't have the onerous responsibility any more but I'd associated that with older people with physical illnesses so now you are all saying its very similar it makes complete sense.

I am scared though. It feels like a loss as some have said, yes I can't just "get on" with things as she still needs me sometimes. I do have a counsellor, can only afford to see her once in a while but definitely needed.

Do your surgery have a social prescriber, they often have a free counsellor attached to them which would give you a minimum of 6 free sessions and more if required, you can make a donation if you wish, but basically it is free. Ours is fantastic She may also refer you to suitable group you can join to begin your new life. Baby steps and you will get there.

sazz1 Sat 17-May-25 23:48:20

I had one of my DAC living with me while at Uni and then as a single parent to DGC. I got to a state where I just couldn't cope with the demands and abuse anymore. Up until 3am proof reading essays, lifts to and fro uni, catering for OH DAC, DGC and the boyfriend, hundreds of arguments around childcare and constantly babysitting day and night wore me down. OH working 12 hour days was no support. I used to talk to my dog who was always there for me (the only one that was) sat in the garage to get away from it all.
Fast forward we moved 100 miles away and DAC moved out to their own home. Our relationship is great now most of the time. Boyfriend is now ex and DAC is so much happier, coping well, has a gd job, lots of friends and is a much nicer person. We stay with each other at least once a month and get on really well. I'm making a new life here and getting myself back to the confident person I used to be. Take an interest in local groups, join a few, do voluntary work, meet people and enjoy the freedom. Best wishes

Rocknroll5me Mon 19-May-25 10:16:29

You’ve done really well haven’t you. She’s better. Fantastic. Of course you feel a bit lost and unneeded but you are also extremely insightful. I thinks it’s all normal. Normal pain that life gives. I think this is part of the process that will end up with you finding meaning and purpose in something else. All achieved with a bit of pain. Never off the shelf. Or maybe you will find you are just enough. Certainly for now. I just love your spirit.