New here - The person I cared for is gone - Didn't know there were support groups for carers

  • 5 replies
  • 46 subscribers
  • 482 views

New account.

I was a full time carer for my mother for 4 years. She died just before Christmas. Funeral is in 2 days. I was searching for my suit and found a box containing various leaflets and a book I'd been given. Seemed useless now but I read through it. Contained lots of information I wish I'd known, but mostly just brought a wash of bad memories. 

My mother used her cancer support group a lot and seemed to find it helpful. I did not think there'd be one for carers. Family members come out of the woodwork to share their support but I find myself wondering where they were when she was alive. Everything they say just feels hollow. I had difficulty relating to people before and is harder than ever now. I thought perhaps talking to people with similar experiences might help like it sometimes did for my mother. Though I doubt I'd be very comforting to talk to or have much to offer in the way of helpful advise. 

  • Hi welcome to the forums. I'm sorry to hear about your mum that is a lot of time you have cared for her. Don't think you have nothing to offer in the way of support for others. You have lost your mum and you are still standing, still reaching out to find ways to move forward. 

    Some people on here will be facing the death of their loved one and have a lot of questions that you might be able to help with. You might be able to share how you coped with different events during her illness. 

    You will find the carers forums very friendly and supportive, you can say anything, rant, moan and someone will always have felt like you and be able to offer an ear. I hope you find some support and community on here. 

    Take care ♡

  • I'm sorry to hear of your loss and finding out about support belatedly. It's often the same with medical conditions and newborns. Hospitals years ago didn't offer any support, even putting you with mums with healthy kids when your baby is in special care. I've been there. Hope it's changed, improved. It seems we always have to Google everything and search for support when we are at our lowest points. 

    I'm in two minds about these forums. There may be people at different stages of the same or similar types of cancer who might become anxious, seeing too far ahead, with some of the information we share. Everyone is different and not all outcomes are the same. However, we can be there, listen, offer support, cry, shout, grieve together. No ties, history, usual family stuff, to get in the way. Appreciate not all will have the same family experiences, fallouts etc.

    For whatever reasons, many families lose touch, also been there, am there. I've just reached out to strangers, work colleagues, a distanced sister, a distanced brother today and cried like a baby. Sometimes people don't know that you need them, or just want some help. They have all been very supportive today. We lost our little dog yesterday, had to be put to sleep, in the midst of a cancer diagnosis and upcoming life changing operation. She was so supportive, funny, with such unconditional love. It's very raw. Sorry to rant.

    The point is, we need to reach out. Don't shut ourselves off. People are generally much kinder than we give them credit for. I laughed with my sister that our dad used to say we only see so and so at weddings, christenings and funerals. It's typical in many cultures, especially in the UK. 

    Be kind to yourself and you've already offered something to me and others. A shared experience of family relationships, the pain of loss, the lack of support sometimes.  We can only share what we know to try and change things and improve things for others. Helping others helps ourselves.

    Best wishes Heart 

  • Just wanted to send you a hug for what has been a very difficult time. You’re still going and know that you did your best for your mum that counts for a lot. Best wishes. 

  • I am so sorry for your loss. This is a great place for support. I didn't know of it either until MacMillan told me. I have felt comforted that I am not alone and I hope it can do the same for you. I hope your memories of the wonderful times  you had with your mum are comforting for you now. Please reach out if you need anything there is always someone on here I have found.

  • Got a call last week from 2 of my mums friends from college. They told me they're doing a run to raise money. I was annoyed at them. Kept the conversation short, once they hung up, I shouted. I wanted to say 'It's a bit late. Why are you even telling me?' Like did they expect me to say how great it was? How helpful? I wanted to tell them the only person I cared about with cancer is gone, they can do whatever to make themselves feel better.

    I'm looking after the dog now. He never understood what was happening. You hear about amazing dogs who seem like they always know the right thing to do. He wasn't like that. I think he knew she was sick and became hyper defensive. I arranged for him to visit her in hospital a week before Mum died, thinking he'd bring comfort. Instead he didn't recognise her, and panicked, accidentally pulled her cannula out. Now he just barks at me constantly. Like he remembers there used to be someone else here and he wants me to bring her back. It just feels like I'm constantly being shouted at. 

    I should probably avoid forums like this. Mum met someone on her facebook group with the same cancer and stoma that Mum had. Except she hadn't told anyone and was keeping it to herself. Mum had been so strong the whole way, I thought she'd be able to help the other woman so I encouraged her to meet them in person. The woman wasn't interested in anything Mum had to say. It seemed like she was in a hole and was more interested in pulling other people down with her. After that meeting, Mum didn't get out of bed for a week. I was annoyed at myself for encouraging her to go and have lunch with them, and more annoyed at the woman for being a drain on her energy.

    Now I think I'm the same way. At a time in their lives like this, people just want encouragement and good will and I don't have any left.