I am about to leave work to become a full-time carer. If anyone has done this how easy or problematic is this process?
FormerMember
Hi Millie-roase
I've just popped in here from the Bowel Group. I cared for my husband through his lung cancer - although I was already caring for him due to other health conditions, and a couple of years ago I was the main carer for a close friend when he was diagnosed with small cell lung cancer.
You haven't given us much info about you or who you are caring for and their condition, so it is hard for me to say much BUT the one thing I feel I must stress is that you have to look after yourself as well as the one you care for. Get in touch with your GP and ask if you can have a carers' assessment. It is doubly difficult during this crisis but try to have a little break - even a walk around the garden for ten minutes - it helps.
Caring is not always easy, but you do learn to cope and you will find that there are good times along with the difficult ones. I was able to set up good support services for my husband and for my friend to help me in my caring role, but I don't know how things are working at the moment.
Take care, and keep safe, and I'm sure others from the group will be in touch with you soon.
Hi Joseph I had to read through some of your previous posts and now realise that you are thinking about becoming a full time carer to your wife who has had head and neck cancer and had surgery to remove lymph glands and tumour removed from her pallet and a "flap" was put in.
It is a life changing event for you to become a full time carer, 24 hours per day.
The assessment will look at everything your wife needs to make life easier for your wife and will discuss any home adaptations and financial benefits that might be available to your wife.
This assessment is to make sure you are being supported as a carer and receive information on all help available.
Normally assessments are carried out face to face but in the current Covid situation these have been suspended but nevertheless you should contact that Adult Social Care Team and get yourselves on the radar.
You do not need referrals from anyone you just apply
You should register with your GP as being a carer, most surgeries make special arrangements for carers with regard to appointments etc.
You may find that your local hospital runs some form of carers club where you can get discounts on things like parking, cafes etc.
You are already acting as carer to your wife whilst you are in full time employment but the transition to being a full time carer can be something else with being responsible for everything your wife needs, washing, eating, taking medication and a thousand and one other things all of which will put a strain on you and you might have to consider someone coming into give you some respite. Fifteen minutes in a quiet room or a walk round the block once or twice a day will be just the thing to recharge your batteries.
I hope that this gives you some information on being a full time carer but my real hope is that some of our friendly members will follow this shortly with their real life experiences of being a full time carer.
Joseph, whilst this site is a great place to learn about the experiences of others we do serve another purpose and that is when you are down and need to let off steam about anything this is a very safe place to express your feelings knowing that only people like yourself will hear your and above all understand you for the very simple reason they are all exactly like yourself, and any response you get will be heartfelt but never judgemental.
Please keep in touch with the group, we are here for you when you need us and if we've nothing to say we'll send you a big hug to show we care.
Ian
Carers Only Group CC
By clicking on any of the green text above will open up new pages for you
Thank you VickiLynne. I am about to start and get all my finances sorted first, my wifes P.I.P. and my careas allowence and any housing/council tax benifit etc.....nightmare i've been putting off for the longest time.
I know just how you feel, I've been there - sorting out my husband's care plan - but you do feel so much better and less stressed once you've done it.
Perhaps do one application a day per day.
I see you haven't filled in your profile. When you're less busy and have more time think about doing it as it helps us to understand a little more about you and also your wife.
Wishing you luck with it all,
Take care, and remember to look after yourself as well as your wife.
I was my late wifes full time carer for 7 1/2 years. Becoming a full time carer is certainly challenging - you wiull constantly find yourself yanked out of your comfort zone and doing jobs that you never thought you would have to do. At the beginning, I found the most daunting thing was that I didn't even know how much I didn't know. The two best bits of advice I got early on was to 1) become a lot more organized in every facet of our lives and 2) ask questions and learn whatever you can about the relevant medicines, treatments and side effects you may be confronted with. The unknown is the greatest incubator of fear - learn whatever you think will be of assistance to you and your partner.
While I was caring for my wife, I learnt so much - about myself, about cancer, about caring, about us (as a couple).
Looking back, caring has made me a better person, but it has been a long road to recognize this in myself.
The first steps down the cancer road can be, for the carer, horrifying and stupifying. Medical terms you're not familiar with, treatments no-one fully explains, schedules that seem impossible to meet - the list goes on.
I've posted several answers here on varying topics. Below are titles and links to those answers, but please bear in mind that everyone's cancer journey is unique.
The "Planning Ahead" post may seem a bit cold hearted or pre-emptive, but, for me, it was the one thing I did early on that provided the most benefit when I needed it the most.
I truly hope there is something of value to you and your wife in these. If not, please don't hesitate to reach out to the others on this forum. There are some remarkably compassionate and wise heads in here. Don't be afraid to ask.
Hang in there.
Ewen :-)
The day after your carers journey ends, the sun will still rise.
I am sorry sorry to hear your latest news. It is so hard at first to cope and come to terms with news like this, and it must be even more so during this crisis. See if you can speak to her Cancer Specialist Nurse to find out whether they have been able to discuss a treatment plan for her, but I expect they will want to deal with this unrelated condition before they make plans for her cancer treatment.
Macmillan has a great help line. The number is 0808 808 00 00 and it is available from 8:00 am to 8:00 pm 7 days a week and you will able to speak to someone who will be able to offer support and listen to you.
I am sure that everyone will do their best to care for your wife and I hope that you will soon receive better news.
I know that many carer organisations are arranging telephone support for carers at this time, if you haven't been referred for a carer assessment, contact your GP he/she may be able to put you in touch with a service that can help support you at this very difficult time.
