Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

advice for carers

Deco
Posted by

Hello to everyone out there.

I just wanted to start a discussion/advice post to all those out there who are having to care for a loved one who is suffering with this cruel disease.  My own mother passed away from pancreatic cancer last year only 3 months after her diagnosis.  I am an only child and my mother was a single-mum so it was really just the two of us that initially had to deal with all of this (and by this i mean dealing with the diagnosis, health issues, benefits/PIP, contacting the hospice/palliative care nurses, organising the funeral etc.).

I am no expert but I can offer my own personal experiences and advice as well as a friendly ear to any of you out there who are feeling overwhelmed, sad or angry (oh my I was SO angry with everyone when we got the diagnosis).  Feel free to post questions, advice for others or just moan and rant at the universe.

You may be feeling weak and useless but remember you are stronger than you think and you CAN get through this.

Big hugs to all out there xx

You are not alone. 

You are not alone. 
snj963
Posted by

Morning to you. Am so sorry to hear about your mum and my heart goes out to you.  I have found being a carer for a loved one is certainly a roller coaster ride of all sorts of emotions and feelings. We have to be strong for them but deep down you feel worthless and can't cope never mind the worry financially taking time off work not being paid and having to keep your head above water so as not to lose your home.

My husband was diagnosed with melonoma stage 2a in may this year. It's all very quick and he will soon be on his 6th operation as they found another mole that was cancerous. Results came yesterday.

Like yourself there is only my hubby and I.  I don't have any brothers or sisters or children. The only family I have are all in their 80s and not in the best of health themselves so I don't want to worry them. I just feel so alone sometimes and am anxious about the future.

My mum passed away from breast cancer in 1977 so it has brought all the memories back from when she was poorly and as a young girl I did a lot as my dad had to do 2 jobs to keep the money coming in. Am not after a sympathy vote here by any means it just helps me to chat about things as back in my childhood years no one chatted about it.

Thankfully now and thanks to all the wonderful and caring people who help it's a subject which is a lot more open to talk about and share feelings with others who are and have gone through the same.

I am glad you put your message up and anyone else who wants to join in with similar circumstances you all have my support and help if I can help in any way.

Take care and stay strong

Deco
Posted by

Thank you for your message snj963,

I'm sorry to hear about your husband, 6 operations!  That must take a toll both physically and mentally on the both of you.  For what it's worth, you are both in my thoughts.  I hope things get better for you both.

It is very tough caring for a loved one. I used to tell myself that my mum had raised me all on her own and made so many sacrifices and that now it was my turn to reply her kindness by caring for her and doing every little thing that she wanted me to do.  I even got up at 3am one morning to make her a full cream tea because she had woken up wanting one.  It still makes me laugh though, such a silly thing to be doing at 3am but life is ridiculous and you have to hunt for those little chinks of light amongst the shadows.

Do you get any time to yourself at home?  Are there any friends who can come round and make you a cup of tea.  You need to be the centre of the universe sometimes too!

Hugs

xxx

You are not alone. 
snj963
Posted by

Thank you for your message Deco 

It made me laugh about you making a full cream tea before 3 am but that's the kind of things we do as at least you feel you are helping them in some way  and sometimes we need to make light of a dark situation to help us carry on.

I have 2 big dogs that I take out for walks every day so that keeps me occupied. I do have a lot of very kind friends as well who keep inviting me for coffee etc and if I want to chat which is very kind of them. Unless you have been through it though I find a lot of them although very helpful don't really know how to react or what to say which I probably wouldn't either if I was them. 

How are you doing now? I hope you have managed to cope with it all and I think it's very nice of you to be helping other carers after what must have been a very upsetting and traumatic time for you.

Thank you again and hugs x x 

googlemuma
Posted by

I have been caring for my husband for the past two and half years. Most of that time on chemo and with all that entails plus weeks of not being able to do much. Since beginning of year when he stopped chemo as the cancer was still spreading my duties of carer increased and now with him confined to a bed downstairs I am now pretty much full time. 

I now have total and full admiration for those that care for loved ones continuously for years. I am exausted by the contsant demands for water, help with having a wee, trying to get him on and off commode. Moving him in the bed. He has very little strength but tries to help as best he can. Trying to decipher his confused ramblings. 

I used to be able to go out for a morning or so but now he doesn't / can't be left on his own . Fortunately my son works from home so can  Dadsit  when I really need to go out. 

My saddest regret is the change in our relationship. Maybe natures way of preparing for our eventual separation. I hardly remember our life before cancer, when  we would drink early morning tea in bed, rant at the news and put the world to rights. Go out for lunch, plan to meet up with friends or potter around the house together. I hardly recognise him as the man I love.

i feel I am no longer his wife.

on the plus side I have met lots of new helpful people from district nurses to hospice nurses. Without them I would never be able to have got this far. 

Love to all. Kathy. X

I walk around like everything is fine, but deep down, inside my shoe, my sock is sliding off.

Deco
Posted by

Pets really do help don't they!  I have a little noisy cat that keeps me smiling.  I don't live in the UK so when I went back to care for mum I had to leave my husband and cat and I found that very difficult.  Animals don't judge and they don't fear the unknown.  They live in the present and seem so happy for it.  They are some of the best teachers I have known!

I also understand your comment about some friends not understanding the situation because they themselves have never experienced it.  I was lucky enough to have a very good friend who lost a parent at a young age (not to cancer) and she really did give me some great advice about dealing with grief.  I don't know where I would have been without her.  She let me live at her place when mum was at the hospice as her house was only a 20 minute walk away.  She fed me and hugged me and came to get me from the hospice after mum had died. We cried together in the car.  In this respect I count myself lucky to have been able to reinforce my relationship with her during my mother's illness.  It's the tough times that show us who our real friends are.

When my friends (most of whom I have known since primary school) felt unsure of what to say they would tell me, "I don't know what to say or do to help".  I found this a great help because it meant that I could control the conversation.  If I wanted to talk about mum, I could and if I didn't then I could ask them about their lives.  Sometimes they would say that they felt silly talking about such small problems when I am watching my mother die but I would let them know that I needed to hear about "silly" problems, I needed to be reminded that the world was still spinning for others even though for me it had stopped.  They were and are all so good to me.  I hope one day I can repay them for their kindness.

One of the biggest things that I learnt from this life event is the power of clear communication.  I can't stress this point enough!  Talk talk and talk some more, keep a diary, join a forum such as this one, chat with the ladies at the supermarket checkout!  Talking reinforces living, talk even if no one will listen!  Just as our loved ones should not be defined by this disease and the last sometimes painful months of their lives but by all the memories prior to that, we carers should not define our existence solely as carers.  We are wives and husbands, daughters, sons, siblings and best friends and we will continue to be so even when our special person has passed.

It's important for your mental health to be able to look back at this awful time and think, "I did EVERYTHING I could possibly do to make everything as comfortable as possible for ....".  I feel that I did my mum proud by caring for her and aside from the pain that troubled her until the end I feel that we gave her the peaceful death that she wanted.  I have no regrets.

My heart goes out to everyone who has to deal with this.  Stay strong!  You CAN do it!

xx

You are not alone.