Making a new life: 17 months on and it's not like I expected

For anyone who is bereaved or no longer providing care.
Hi

I'm new here and just wondered if anyone has any pointers for me or has gone through similar.

My lovely daughter was diagnosed with advanced cancer (a total shock) at age 28 in Dec 2011. She became immediately bedridden and I was her sole carer 24/6 until I got ill (and she got better temporarily from chemo), then the cancer came back (we knew it would) and I could only care 4 days a week to protect my health (other people and social services helped) but I could never switch off 24/7. I didn't want to "enjoy myself" or smalltalk with people. I couldn't, she could die any minute and maybe I wouldn't be there. We were very close before anyway.

She died Sept 2013. I decided to take a year of doing nothing, resting, looking at what I might want to do in future. I somehow ended up starting my own business which I really like and enjoy. But, I've become "workaholic". I work 60-80 hours a week and have no other life. I still feel the same as I did back then, that there's something serious "left behind" and that having fun is trivial and shallow. I'm still a bit haunted by seeing her die and it replays over in my mind often. All my birthdays/christmas's feel ruined as she always helped me organise them and it feels like I have lost my "family" as those ocassions just don't really exist anymore.

I've tried to get back in touch with friends but they all knew my daughter and were all shocked and still feel awkward around me. I don't feel I can laugh in front of them as they'll think I'm over it or have no feelings for my daughter anymore.

Its not just caring for my daughter I miss, but that I was really important to someone (she told me often) and I'm not anymore. Social events feel empty without her being around to tell her stuff or her being there as we socialised a lot together.

I've joined groups but to be honest, I just want to be the person I was before: happy, social, popular and carefree, not focussing on what I've lost but rebuild a new future. I am now the opposite of who I was, I feel. I'm just a dull workbody who doesn't care about anyone (not as much as I did before) because their everyday problems seem so petty.

I really don't like this me I am now. I miss myself.I miss my life and I'm 52 and have aged somewhere along the line.

Anyone else?
Never been through this pain, but others here have, and they describe similar feelings. All I know is that "this too will pass" and wishing you the best in overcoming what must seem like an irreparable loss. It can take a year or three, but it only dulls the pain. Take gentle care of yourself: your memories and love are what sustains the meaning of her life, and you would be letting her down if you didn't learn - in due course - to enjoy and live life to the full without her.
I'm 61 now, and when think of who I am, most of my identity is related to the last five or ten years of my life, not the rest, though it is good to reflect. We are human, we move on.
I've had an awful 15 years. As well as having a son with severe learning difficulties, I've lost all four parents and my husband. I've had major surgery for a very serious illness, then had a head on accident which wrote off a Range Rover and left me disabled for five years. I thought the old "me" had gone forever. Then I had a wonderful holiday in Crete last year, at a hotel with just 33 rooms, but two swimming pools, specifically designed for single people. Many turned out to be former carers, although this only gradually came out when I chatted to others. At the time, my mum had moved into a nursing home, I was exhausted. So get away from it all, away from everyone who knows you, everything which reminds you what you have lost. We are not allowed to advertise here, but feel free to send me a PM. I first went in May, then decided to have two more weeks in September. Two more holidays booked there this year. I promise you, the old "you" is still there, let the genie out the bottle!!!
Its not just caring for my daughter I miss, but that I was really important to someone (she told me often) and I'm not anymore. Social events feel empty without her being around to tell her stuff or her being there as we socialised a lot together.
that resonates so strongly with me - but in my case it was my Mum who passed away; she was my best friend until Alzheimer's took away my Mum and left a stranger in her place. She died in March 2012 and I'm still coming to terms with the fact that no-one really 'needs' me any longer. To try and overcome that feeling I volunteer at a local charity and I'm hoping to be taken on as a volunteer teacher's assistant at my great-niece's school.

Perhaps you could use some of your work related skills to help a local charity ? If the thought interests you perhaps have a look at this website https://do-it.org/ ?
Hi Terry and welcome. No words of wisdom as such, not really, just my thoughts as a fellow parent who has experienced loss, albeit in different circumstances.
To lose an adult child causes a strange mix on top of the normal grief. It is different from losing a parent or a partner because there is nurture there, these are the children we held on our arms, looked out for, protected and raised to become adults. We talk to them as adults, as equals, yes? Friends. We plan and celebrate and commiserate and share our lives and theirs. And when they are gone, however they go, some part of it will replay over and over because the mind won't let go, no matter how much we want it to stop looking back and look forward.

It is natural Terry, you already know that, doesn't make it any easier. Grief has probably given way to memories of other sorts but maybe that is the brain adjusting, allowing time? Maybe this is something that can't be rushed. I don't think the exact "old" you can come back again, the experience of loss of a child doesn't allow. But the old you is still you, only altered by what has happened - you're still the same person and you will still be able to move forward naturally, even if you have to do things differently for the moment. Memories bind us, many may be good and bittersweet but others may hurt like crazy and I think we should be able to be open, to admit that there is anger that we are bound like this, bound to pain. At least in my case - I'm angry my mind keeps going back to the hardest parts regarding my son's death 9 months ago, instead of concentrating on the years we had with him. He was 28 and died unexpectedly.

It can only last so long. Being the humans that we are, we are capable of constantly moving changing both ourselves and how we live our lives. Yet we worry what others will think of us, if we laugh, we're "over it". Nope, but you're living with it and living means laughter, it's part of getting back the bits of you that seem to have gone AWOL. Allow yourself to feel Terry, no right's or wrongs, and you'll be moving forward. Sounds trite but you carry a part of her with you anyway, don't you? You will have the sense of importance again but that is one you will have to figure out for yourself. You enjoy work but that's a crippling workload and there really is no place to hide, no matter how many hours you work. There's nothing been "left behind" Terry - you've done it all, and now it's safe to let go and look at putting some time aside for yourself and discovery of what feels right, what brings a spark.

I'm no sage lol, I struggle too. I refuse to immerse myself in the pain of loss and blame him for not living my life, it's up to me to live it, he's not holding me back. I've had cancer myself this year, his twin has her own serious health issues and some days I succumb to anger and despair. But it has to get better hasn't it? Patience I think, and trying different things, make new memories and acknowledge that is life now. You are important and always will be, you looked after your girl. That job is done and it's time to look after you.

With my best wishes.
I can relate to what you say. I was the sole carer of my mum who had spinal cancer and like you I could not turn myself off. When my mum died on Christmas eve 1992 I decide to take time out but was put straight back in to the caring roll of my cousin who came to live with me and still does. He has brain damage and learning issues and is insulin dependant and has a few other health problems.

I still worked around the clock until a few years ago I contact carers uk and they helped me. I still run my own company and I'm still a carer but talking to Carers UK on 08088087777 was the start of a healing process for me.

I now do voluntary work with Carers UK and try to make a difference for other carers and get involved in other ways.

I'm still a carer and running my own company but now spend less time working and I see a different me. Before all this the me I seen I did not like.

The loss of your daughter is hard to come to terms with and it something that remains with you always. The pain just get more silent as time goes along. I could say I fully understand but I can not as your loss would have been more painful as you don't expect to out live your kids.

Talk to the help line they might help you find the answer you are looking for and there number is 0808 808 7777.

I am here if ever you want to chat.

What about replacing some of the work with meeting with friends or doing voluntary work for a few hours. Carers UK have a lot of volunteering roles and in these role you could meet someone who because of your help feel better and able to deal with what they need to do.

I am a local ambassador and I have used this to help other but also to make people aware of stuff and in doing so I have tried to make a difference.

Take time out for yourself. Meet with friends more and get out and do other things. It will never be easy for you but in time things improve. I buried myself in work and found myself going down the route your going down now.

I contact the carers centre, and carers help line and both of them helped me make a fresh start. I am 52 years old and I owe them a lot more than I can repay. Even as a former carer you can use the local carers centre in your area.

I highly recommend the helpline too. 0808 808 7777

Feel free to contact me.

Gorden
Hi Terry,
Everyone takes differing amounts of time to come to terms with this.
Hubby passed away aged 55 after living 20 years with syringo myelia (spinal cyst from top to bottom) and I was his carer for the last 12. That was 2 and a bit years ago and the first Christmas was spent alone at home, spurning all family and friend invitations to join them, in an absolute state of alcohol induced paralytic-ness. Then a few months later I suddenly realised that he must have 'been watching' me get so paralytic and would be so sad about it (curtains would be drawn, phone off the hook, music blaring and glass always full most days). It kind of made me think that I didn't want him to 'see' me like that, destroying myself, so I got myself a bit together, started sorting all the financial stuff out/bungalow went on the market etc etc etc. Made me cope so much better. I decided that I should get happier, at least a little bit, to cheer hubby up (if not myself) and actually in doing so, I DID make myself happy at the same time, not just doing it for his sake.
Your 17 months has been spent with you still 'coping' and feeling bad if you get happy. Do you want your daughter to see you so unhappy that you're cramming your life full of work and not thinking about yourself ever? Not ever any more???? Have a think about what you're doing, how you're spending your life and what you'd LIKE to be doing. Ignore, totally ignore those who think you're doing things too soon. It's your life and only you know how you feel and what you want to do. Sorry to ramble, but I feel so strongly about people who say the words 'too soon',(as my bro in law did with me, when I met up with an 'old friend' and became a couple). You do what YOU want to do. Live your life happy, it's the only one you have.
Hugs, Fran
dear terry,
i am so sorry for your loss
i lost mr bigbear august 2013.
sincere condolences,
yours in solidarity
big bear x ;) :)