The impact of a loved one's life changing illness
There are times in life, when unexpected things happen; where it feels as if any control that you had over your life suddenly disappeared and went out of the window, alongside plans and hopes for the future. You may have been experiencing life, with its ups and downs unaware of life-changing events, about to impact on the way that you live, think and feel.
When my spouse had emergency, life-saving surgery hours after he walked into A&E, I went into auto pilot. I was trying to balance his needs with those of the rest of the family. I was in shock, terrified that he might not survive surgery and feeling helpless. Although I had support of family and friends, I felt alone in my battle to cope.
When a loved one is suddenly taken ill, with a life changing condition naturally people rally round to support them and take care of their physical and emotional needs. Initially, this might involve surgeons, doctors and nurses, as time moves on this support may also come from family, friends and maybe carers. As the spouse or partner of the patient you may be trying to do the best that you can to help them to accept and adapt to their new way of life.
There is a wealth of information available on how to support family members who have serious medical conditions or sudden onset disabilities, but extraordinarily little advice on how to look after yourself when you are the person supporting the patient. It is important, if you are in this position that you also make sure that you look after yourself.
While your loved one is in hospital, friends and family will be keen for updates on the patient’s recovery and it is likely that after returning from hospital visits, exhausted and hungry, the telephone calls and text messages will be relentless. You might feel obligated to answer the phone and share information, retelling the same story over and over. You will probably go to bed exhausted, but unable to sleep because you are worrying, and can’t stop your mind from spinning. It is easy to become overwhelmed and put your own well-being on hold while this is going on.
It is important to remember that your health and well-being is important too. You need to make sure that you have got time to eat, rest and take care of your physical and emotional needs. When I was in this situation, I found it helpful to nominate a few friends and family members, who I gave regular updates to, and asked them to share the information with others. Doing this, was the only way that I managed to have time to eat. I also chose to not answer the phone or reply to messages after 9.30pm, allowing myself time to wind down at the end of the day, reflect on the day’s events and give myself space to feel.
This might be something that you could try or maybe you can find another way to ensure that you keep some time for you.
As time goes by and your spouse/partner comes home from hospital, you might find that you have taken on a new role as a carer; either whilst they are recovering and adapting to the change in their health or learning to live with a new disability. It is easy to find yourself consumed by the role, putting your own needs aside, whilst focusing on doing the best that you can to make life easier/better for your loved one.
Emotionally, your spouse/partner may be struggling to come to terms with the changes that they are experiencing. It is likely that they may be feeling a mixture of emotions and expressing them in ways which are unfamiliar to you. It might be that they show more anger/ frustration or low mood than previously and as the person who is closest to them you are likely to be the person who is on the receiving end of their changing moods.
When this happened to me, I would often feel helpless and confused. There was nothing that I could do to make the situation go away. Nothing that I did could change my husband’s feelings and I was confused over his behaviour towards me. I felt as if I had no right to struggle with the emotions that he was showing, I felt that it was my role to support him and it felt as if I was letting him down when I didn’t feel able to do this. Often, I felt overwhelmed, anxious about his recovery and our future. I felt irritable, worried, and emotionally fragile; often crying late into the night.
I’m sharing this because I think it might be reassuring for other people to know that it’s okay to “not be okay”. Feeling stressed, anxious, and overwhelmed are natural responses when life changing events happen.
Beating yourself up because you feel this way can lead to guilt, frustration, anxiety, and low self-worth. It can be helpful to talk to other people about how you are feeling. If you don’t feel able to discuss this with friends, family or your partner; you might find it useful to arrange some counselling sessions.
I realised that I needed to fit in time for self-care, whether that involved a visit to the hairdresser, having a bath, going for a walk, or spending time with friends. Taking time out for myself helped me to keep a more positive outlook and cope better with the changes to my life.
If you’re in a similar situation, remember that it is still important to take time out to be “you”. Think about the things that you liked doing before your partners’ illness. (Maybe an activity that you enjoy or friends that you spent time with) or maybe something new. Plan when you will fit these activities into your new routine and consider whether you might want to sort out some respite care so that you can enjoy your activity without worrying about your partners needs being met.
Doing something, just for you, might feel selfish, but think about the kindness that you would show to a friend in the same position. It’s likely that you would appreciate how tired and stressed they are and encourage them to take a break. It might help if you think of this as being a way to recharge your batteries, to refresh yourself so that you can continue to be the best version of yourself.
There are no right or wrong emotions to feel when you experience life changing events. Try to talk about your experiences. Talking to friends and other counsellors helped me to understand that although the illness did not happen to me, I have also experienced trauma and changes to my life. I have been through a lot and am adjusting to the changes in my life.
I am lucky in that I have people who I can talk to, who have listened and supported me at this difficult time. I have learned to be kinder to myself, and more accepting of the range of emotions that I experience. I try not to beat myself up when I am having a tough day, because I know that when I show myself some compassion, and acknowledge my feelings instead of fighting them, I become more resilient and feel more able to cope.
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