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Newcomer bereaved and isolated - Carers UK Forum

Newcomer bereaved and isolated

For anyone who is bereaved or no longer providing care.

This is quite a feat for me to do something like this and still I'm unsure but I have read many of your heartfelt stories over the weeks and feel a need to join. I was a carer for many years looking after my husband who had a number of conditions most predominately Parkinsons Disease- progressing to the advanced stage, Bowel Cancer- which he managed to beat after surgery, then 2yrs later he was diagnosed with Lung Cancer- given wks/mths to live - and miracously 3yrs on my husband passed away. That was 2mths ago but he was at home with me and died peacefully. I feel blessed for having that extra time but the loss is hurting. Even though my husband had cancer you are never prepared for the final moments. Every day was a precious gift and as much as we could we would enjoy it. My husband was a man of great character. With all his many ailments he never complained. Not once. He was quite a remarkable man with many artistic talents that he enjoyed doing at a local hospice with a number of his paintings being sold. He worked in the film industry and was a very sociable man but towards the end he lost his voice completely which was very frustrating for him. He was completely immobile a shell of the man he use to be which thankfully was only in the last 3mths of his life. My consolation, if any, is that he wasn't in any pain or distress. As a carer I went through many trials and tribulations, it's a harrowing experience but I did get the care he needed in the end. He received the support of 'continuing care' and with that came all the professional bodies one needed and only a phone call away. This was the first time I knew I was going to cope with it all. It gave me time to do things and not rush around in a blind panic doing the shopping etc. I had a little space to myself and thought it was heaven and that gave me energy again. However you never lose those days of running around like a headless chicken and those endless sleepless nights but what should save us all as carers of the endless hours we put into our work is the fact we need help ourselves. Now that I am no longer a carer to which I feel quite isolated and rather lost now that all the support has been withdrawn and my bereavement raw as hell, I'm left wondering how many of us actually do get support? Before and after? However this is probably not the place to start my rantings and ravings about the rights for carers although it would be interesting to know if carers are getting support for themselves like regular medical check-ups etc. What is actually out there for carers? Are we told what help we have available or do we have to seek it out ourselves? I am all too aware of the short change carers get and feel I need to do something about it and join a group to lobby somebody into action. I know it's all been done before but the more people the better. Does anyone have any suggestions? My heart goes out to all of you caring for your loved one and can only hope that your future will not only have to be you giving up your life for someone but that you receive the due respect you all deserve.
God Bless
Hello Wonder and welcome to the forum, I am so sorry for your loss, and reading your
story a lot of other carers on here have lost loved ones, and I am sure they will post
soon and help and support you.

Regarding the campaigning side of things, Carers UK campaign for carers, and so do
a lot of other organisations.
Carers UK http://www.carersuk.org/Newsandcampaigns.

Carers Poverty Alliance http://carerspovertyalliance.com/

There are a lot of others, which people on this forum support and they will give you
the details.

I do hope you find help and support and of course friendship

Kind regards

Hi Wonder,

Welcome to the forum. Quite a few members on here will relate to what you are going through, especially how the sudden amount of time on your hands is hard to cope with.
As well as wanting to campaign, wanting to raise awareness more of these issues, is there anything for yourself that in the last few years has been put on hold. A pastime/hobby that you gave up, any courses missed that interested you.

Further down the forum is a section re campaigning. Take time to read some of the links and then ask any questions. Maybe you have a suggestion that you would like support for. You mentioned rants and ravings , well you're in good company Image , the frustrations are many but if we harness it and remain focussed, we can make a difference.A slow process when you're banging your head against a brick wall, but one that we will continue.

In the meantime, I am sure others will be along to greet you too, and not a doubt in my mind that your own experiences will benefit others.Your hubby sounds like a remarkable man and I am sure he would be proud of you joining today and wanting to help take action.

x xx
Hi Wonder, I am so very sorry for your loss and the time of pain and grief that you and your husband have so bravely endured. I hope that you are able to draw some comfort and consolation from the commitment and care you were able to give him.

Welcome to the forum.
Hi Wonder and welcome.
I am so sorry for your loss. (((((((((((((hug))))))))))))))))
Hi Wonder, I am so very sorry for your loss and the time of pain and grief that you and your husband have so bravely endured. I hope that you are able to draw some comfort and consolation from the commitment and care you were able to give him.

Welcome to the forum.
I can't add anymore than Joybelle has said,

With love, Bluebird
Thank you for your welcome and messages. At the moment I'm browsing through all the websites I've found and trying to find my niche so-to-speak. I'm reading the links as you suggested Rosemary and their is so much! Concentration can be a problem. But I seem to want to lock my interests in carers rights and this forum seems to be in the forefront at present, it has so much to offer on valuable information as to how we feel.

Interestingly today I've had an email from Carers UK media office regarding a survey I did some time ago and if I would be interested in taking part for Carers Week. Of course I'd love to but I don't feel ready to face too many people at the moment. I need to get over this business of not stepping outside the door some days.

Krys your websites are interesting thank you I'm still looking through.

I'm going back to look at the forum to find out more about this formidable workforce we have out there. You! The Carers!

God Bless
I need to get over this business of not stepping outside the door some days.
Every journey starts with a small step. If you have a path, walk it each day till you get used to going out again. Once you have mastered that, walk to end of your street and back.I know they sound so basic, not amount to much, but it slowly helps you gain confidence to leave the house again. Some days you might bump into someone and have a few mins chat, others days meet noone. Just take your time ,you will find your own pace.

If you come up with any ideas re campaigning, feel free to share and ask for our support. They may/may not have been done before but it makes no difference. We have to continuosly chip away.

Rosemary your quite right small steps etc. Sometimes I just don't recognize myself and I want my confidence back I'm such a positive person even when I was caring.
The other day I went to the crematorium to arrange a memorial for my husband in one of their beautiful gardens and it being a happy and sad moment it was certainly fulfilling. Somehow it gave me a boost, of what I'm not too sure but it certainly shifted me a few degrees away from sorrow. I went with family couldn't do it on my own but that's ok the next step.....maybe will be on my own.

I'm on a learning curve about campaigning and ideas are playing around I'm getting the family involved as well it helps in their time of grief to be interested.

I've got to get off this computer I can't believe I've been on it all day!

Hello Wonder,

I'm so sorry for your loss.

I only found this forum and all the wonderful support, six days before I lost my Mam in January.

I was first and foremost my Mam's carer for so long, that when she passed away I felt just as you said .. lost and isolated. I had trouble concentrating, and had very little motivation to do anything, and I know what you mean about lack of confidence and not feeling like you could face people .. if I went out, I wanted to be invisible.

The time to spare I suddenly had seemed endless, and I didn't know what to do with it at all, but with support, friendship and lots of encouragement, I've enrolled in two classes and am doing some voluntary work. That's definitely helping to build my confidence back up, as well as having something to focus on .. some days will be better or worse than others I know, but keeping busy with things that interest you will make a big difference.

Take care,