Being a carer and looking after your loved one

This is a subject that I think is very much glossed over and is so important. When I was diagnosed in 2011 with cancer, before I knew it was terminal, my partner, now my husband, could have so easily walked away and said “I cannot handle this”, but he didnt. Bless him, he stayed and held my hand and has never let go. Paul has looked after me despite in the early stages of having carers in to take care of me when I was really ill. He has always been there in a sort of supervisory role I suppose.

We have so come a long way since those early days and learn t so much and grown closer as a result. It is not an easy path that you will take and there will be ups and downs but you can get through it. We did and came out the other side.

It made me realise in the early stages, that carers are not treated as well as they should be, especially if they are a member of your family or your husband or wife. Paul has been through hell and back so many times since my illness. I don’t know where he gets his strength from but it is amazing and I so admire and love him for it.

No doubt as carers, you have felt resentment, fear, depression, anger, guilt, frustration and even isolation. But the truth is you are not alone. Many carers are feeling the same out there as you are. Point is I am not sure how you can share your experiences to know you are not alone.

Talking to your carer about how you feel and what is going on gives a better understanding for you both and helps the carer to know what perhaps they can or cannot do for you. We all feel angry , resentful and guilty at some point, which is only natural. There is going to come a time when I will not be able to continue the jobs like running a home, cooking or looking after Paul. But we have Wills and POA’s in place to help us. It is important to try and be prepared for when things become too much. You should never feel guilty because your job is just as hard as the one you love who is going through the cancer.

Cancer can be very frightening. At the beginning, I felt that I didnt know enough about it and when I spoke with the Oncologist or doctors they always spoke in Doctor speak which was like a foreign language at the time. Paul and I soon learnt that you need to jot down questions and not be afraid of stopping them to ask for it spoken in English so you can understand it.

It can help to find a sympathetic person to talk to about your fears and worries. Just talking and getting your concerns out into the open might be enough to help you. Friends are always willing to lend an ear or speaking with McMillan or your Sue Ruder nurse which I always do when she comes to visit. It helps both Paul and myself to ask things and get a better understanding. I would hate to think Paul is quietly worrying about things concerning me and it is affecting his health as he has no one to ask.

There are bound to be times when you as a carer have an off day, as your tired and anxious regarding the person you care for. Whatever the situation, please do not feel you are letting anyone down, you are just being human. Remarkably enough, the patient has bad days too, so you are not alone.

When we were first told, it was an initial shock. We were angry and frustrated as we both wondered why me and why now and what am I going to do to sort this out. In the early days you can well get cross with your carer as you try to understand what is happening to you but try to see things from their point of view too. I hated seeing Paul so upset when he visited me in hospital and seeing how I was because at the time my prognosis was just 6 months. Yes, a scary thought indeed when I look back and marvel at where I am now - a true blessing indeed.

It sounds as though you and Paul have a really strong relationship. It’s understandable that the situation is really tough on him as well as you, but if you have good communication with each other, that must really help.

You mention that it can sometimes be lonely to be a carer. Do you think it might help Paul to join an online community himself? I know Carers UK have a good forum where he could share his experiences and get support from other carers.

Here’s the link: https://www.carersuk.org/forum

Thank you for your kind response to my article. Paul actually does not fall into that category thankfully as he is too busy with his work as he self employed to be lonely and he has many friends not only here on the marina but work colleague too that he goes out for a drink or meal with. What I was trying to get over is that some carers may become lonely as they spend their life 24/7 caring for the ones they love and feel that they have no respite to have time on their own. Paul and I make sure that we both have time to chill and relax. I wanted to air the point that it can be lonely being a carer if you are not careful. I apologise, I did not mean to refer that Paul was like that. I was trying to generalise to cover other people who may read this and to know they are not alone in how they may feel. I probably did not explain clearly. But thank you for the information and the link too.Cookie

No worries, I’m glad that you and Paul both have good support networks and make time for yourselves. :slight_smile:

Dear Cookie. I totally agree with everything you’ve said. Being a Carer is terribly lonely, extremely frightening and frustrating because you have to shoulder the responsibility for your loved one’s well-being. There’s an immense feeling of helplessness, it physically hurts to watch your loved one lose all that weight and see him get weaker day by day and know there’s absolutely nothing you can do to relieve the pain and discomfort.

You remind me so much of my husband. John was a very positive person he had a fantastic sense of humour and was so courageous. In the beginning we too were shocked and went through a depressive state but then we picked ourselves up and decided we would fight it. My perspective was - I was fit and healthy and if John could be positive and brave what did I have to be miserable about? John gave me that strength and determination to do what I had to do. People often asked “how do you do it?” I always said I couldn’t have done it without John’s positive attitude and love.

Cookie you say you don’t know where Paul gets his strength from – he gets it from you, your love gives him the courage, strength and perseverance and whatever he does for you is done out of love. If I had the option - lose John or look after him for a 100 years I’d have picked the later without any hesitation.
One word of advice if anyone finds it difficult getting up and down the stairs please, please, please ask your Macmillan nurse to organize a stair lift as soon as possible. John put it off when I first suggested it, in the end it was too late. I feel so guilty and angry with myself for not taking matters into my own hands and sorting it out before that bank holiday weekend…

I mentioned in my previous post John left me goodbye letter and a video which I find very helpful; if at all possible it would be good to leave something behind for those you love to help them through this most difficult and lonely period. I appreciate it will be very difficult to write letters or record the video and I dread to think what it must have cost John to sit and write/record, but I am eternally grateful to him, he knew these would be my lifeline.

I hope and pray you have a long and peaceful life. If you ever need to let off steam I’ll be here. Sorry I have rambled on a bit.
God Bless
Libby

Dear Libby

Thank you for your positive and loving message full of hope and kindness. From your message, I can detect such a lot of love, warmth and strength between you and your husband and you give a message full of hope which I thank you for from the bottom of my heart. I think it is a lovely thought to leave a letter or a video to your loved one and I have often thought I would love to leave a letter for Paul so he knew just what he meant to me by coming into my life and for having the strength to stay with me and not walk away.

Take good care Libby and thank you for taking the time to write
Cookie

Dear Cookie
Just wanted to say hello and let you know I’m thinking of you and praying for you.
How are you and Paul?
Take care.
Libby x

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