We had to get up so early to get To The Spencer Private Hospital Margate by 8.30 for rays Op
It was like walking into a hotel as James the Male nurse took ray up to his room. I was very impressed
Rays room was lovely with wallpaper on the wall behind the bed was a nice homely touch
After he had signed his permission for the Op he changed into the night-gown and sat in bed. This was then wheeled down to the Operating theatre.
With a TV for amusement I sat and watched the Sunday Politic program’s and was almost dropping of the sleep as he was wheeled back in wide awake put had hated the painful op. He had been given the choice of knock out drug but had been so brave in saying no, then wished he hadn’t been so brave.
When he got dressed to come home after a rest I could see the war wounds. The injections went in where the arrows are pointing.
A brave little soldier as he did feel so much better. He has to allow a few days for the steroid injections to soak in the nurse said. We went off and had a dinner in the Oyster Bed
Father Christmas came over and spoke to me and wished me a merry christmas and what did I want for Christmas. I said nothing I have had my present this year -My life!!.He gave me a hug and had his photo taken with me xx
I said I would put him in my blog but no one will recognise him as he is in disguise.
So that has started my Christmas off just lovely
Ray has come home and is now resting as the local anesthetic’s are wearing off so there is a pain again but not in the damaged area.
I must admit it has been the shoe on the other foot today and I became the carer. It is a hard job as you worry and just want to take the pain away from your loved on. I know now just how Ray has been feeling and so many times I have put him through the worry.
My brian worked overtime and I had planning in my head for if the op goes wrong and I have to go home on my own and then come back again tomorrow. We just can stop our minds going on with a what if story and how we will have to cope.
Than you sit there and Ray wasnt answering the questions properly as he hadn’t heard it right as the Doctor was from abroad and his accent was very strong. So I found myself butting in but the Doc didn’t want me to answer so he dint look at me. Now that something Ray was always saying that as a carer people glossed over his being there.
When you are a carer you spend a lot of your time focusing on someone else. It can feel unnatural to think about yourself and your needs. But it’s important that you look after your own wellbeing too. Taking positive steps to look after yourself can help you avoid physical and mental health problems. If you are able to stay well, you are more likely to be able to provide good support for longer, without getting too overwhelmed. So looking after your wellbeing is good for you and the person you care for. Here are some ideas about how to do this:
It can be really important to have someone to talk to, especially if you’re struggling to cope. Think about the people in your life you can turn to for support. You may have a family member who helps you relax, or a friend who is good at taking your mind off things.
You may find it hard to ask for help or tell people how you’re feeling. Time to Change has some ideas about how you can start the conversation. If you don’t have time to meet up with people, you could try to stay in touch by email or text, or use online video chat.
Lucky enough Ray is going to get better but what about all the Carers that look after a Mesowarrior
Try to take a break when you need it, especially if you are worried about your own mental health. Having some time away from caring can help you feel refreshed, and enable you to manage your own mental health.
It can be hard to make a decision about when to take a break, especially if you feel guilty or worried about what will happen to the person you care for while you’re not there. You may feel more able to take a break if you ensure that the person you care for knows what to expect and has any other support they need. This may mean asking the person you care for to find ways to cope without you for a while, or arranging for family and friends to help cover your caring responsibilities. If you need some help to organise a break, you could find out more about respite care (see section under How can I get help? to find out more) or ask your local social services for support.
The length of your break will depend on how you are feeling. You may only need an hour or two to clear your head, or a day to help you feel more rested. You could go out, take a bath or turn your phone off for an agreed period of time.
It may be helpful to build a regular break into your routine. This can help you make plans in advance, give you something to look forward to and ensure that the person you care for knows what to expect.
You may find that you need a longer break, especially if you are worried you might be becoming unwell. At this stage, you may want to think about respite care.
Make time for yourself
Spending quality time with your partner, family or friends can give you a break from your caring responsibilities, help you stay positive and boost your confidence. Try to make time for the things that you enjoy, for example going for a coffee or a short walk.
Take time to pursue hobbies and activities that interest you or make you feel fulfilled. Try to do something regularly, like a yoga class or going to the cinema with a friend.
I get up half an hour early to do my own thing and start the day as I like to.
Try to be organised
Finding a way to feel in control of your responsibilities can help you manage feelings of stress and anxiety. You could:
- Make a schedule or planner – keeping a schedule of the key parts of your day-to-day routine, such as bathing, cooking or taking children to school, can be very helpful. You could also plan in more detail, for example, by keeping shopping lists and a schedule of meals if cooking is part of your role as a carer.
- Keep important information in one place – for example, emergency contact details and information about medication (see Self-help resources). You could make sure someone else (such as a social worker, friend or family member) also knows where this information is kept in case it is needed when you are unwell or not at home.
Be realistic about what you can do
It’s important to be realistic about what you can do. If you take on too much, you may feel like you never get to finish or achieve anything. You may want to make the person you care for better or take away the impact of their illness, and feel very upset that you can’t. This can lead to stress, anxiety, guilt or low self-esteem. Having a clear idea about what you can do, and accepting parts that you can’t change or do alone, helps to reduce this stress and can make you feel more able to cope.
You might find it helpful to:
- Make a list of the kind of support the person you care for needs – this helps to identify what needs doing and can give you a clearer idea of how much support the person you care for needs.
- Identify what you can do, and what you need help with. Work out a plan with the person you care for about who will provide the care you can’t. For example, you may need medical support or some professional care.
- Think about how you will be able to tell when things are getting too much and you need a break. For example, you may struggle to sleep when you’re feeling low and this could be something you notice as a sign that you need a break. You could write these signs down as a reminder to yourself (see Self-help resources). You may also want to share them with someone you trust and ask them to let you know if they recognise that you are becoming too stressed and need a break.
Make sure you have all the information you need
Making sure you have access to reliable, clear information can help you feel more in control. This could be medical information about any diagnoses the person you care for has, or advice about your rights. If you’re not sure where to find this, looking online or asking your GP are both good starting points.
Plan for appointments and take notes of things you want to talk about. This will help you remember what you want to say and to get the information you feel you need.
Medical language can be really complicated, so don’t be afraid to ask for further explanations if you don’t understand. You can look at the National Institute for Health and Care Excellence (NICE) guidelines which give official recommendations about treatment.
If the person you care for has a mental health problem, you could have a look at Mind’s information booklets, either online or in print. You could also look at the Mental Health Foundation and Rethink websites. The Carers Trust and Carers UK have lots of information specifically for carers, and forums where you can exchange ideas with other carers.
Find positives in your relationship
Being a carer can have a big impact on the relationship you have with the person you support. Sometimes you may feel very close and connected, while at other times you may feel distant or irritated with each other. It can help to talk openly and honestly to find ways of coping with these challenges together.
For example, you could try to:
- think of yourself not only as their carer but also as their friend, partner or family member
- talk to each other about how you will strengthen and maintain positive parts of your relationship
- see each other as whole people, with interests, characteristics and hobbies
- try to do nice things together, as well as carrying out day-to-day responsibilities – this will help maintain your relationship outside of being a carer, and help you connect on a different level
- think about what you get out of caring, and write down a list of positive things that you can look at when you are feeling frustrated or low
- recognise practical and specialist skills and knowledge you have gained, or people you have met that you wouldn’t otherwise get to know.
Focusing on these positives can help you feel that you have a deeper relationship and understanding of the person you care for, and appreciate that they may feel this way about you too.
I would urge anyone who is a carer to try to see the positives in your situation and to realise you are there out of love and respect for the person you are caring for.
Support the independence of the person you care for
Work with the person you care for to see how they can help themselves. Together you may be able to enable the person you care for to make some decisions about their care on their own, and identify times they can cope on their own. It is important to try to respect the opinion of the person you care for and help them have some control over their care. This could mean making sure their wishes are expressed to doctors, or letting them try activities on their own. You may find that this means taking a step back, or supporting decisions that are not what you would do. But this could help the person you are caring for feel respected and in control.
You may also find it helpful to talk about what support they would like from you. This may change over time, so it’s worth revisiting this conversation.
Make a crisis plan
If you are concerned about what would happen if you become unwell, having a crisis plan in place can help to reduce stress (see Self-help resources).
Thinking about the following things when you are well can help you feel prepared for a crisis:
- Discuss what will happen in an emergency with the person you care for, and agree a plan with friends, family or paid care workers.
- Write a list of who should be contacted in the event of an emergency and keep it somewhere easily accessible.
- Leave details about your caring responsibilities, such as medication you normally give and ongoing treatment the person you care for is having, and make sure someone else knows where this information is. This could be a friend, family member or health or social care professional.
You are all the unsang heroes in my eyes. You dedication for you loved ones is just wonderful and you patient does appreciate it even if they don’t say so. It’s not easy to watch a loved on suffer you can feel so helpless. Give a huge hug everyday and always keep telling them you love them.
We Mesothelioma Warriors Raise a glass to our carers and say a huge Thank You xx