Being a carer can be rewarding, but it may bring lots of new and unexpected challenges. At times it can be difficult to look after your own needs as well as someone else’s, especially if their diagnosis has changed some things about the person.
In this topic we explore ways to look after yourself, in the hope that it will be easier to cope with difficult times. In the video below, Judi shares her experience of carer’s guilt.
What do you do as a carer?
Starting in a caring role may mean doing things you have not done before like…
- Home chores,
- Finances,
- Giving medication or,
- Paying bills.
Your friend or relative may be capable of making decisions now. However, depending upon the diagnosis, this MAY change.
Depending upon the needs of the person you are looking after you may be doing a range of activities such as:
- Organising appointments,
- Taking someone to appointments,
- Cooking for someone else or,
- Helping to shower the person.
Have a think about how your role may have changed. What sort of carer activities do you do? You may want to find out what Steve, Alice or Hattie have to say about what they do.
Carer stories: Steve
“It has been a difficult year, but we try to be optimistic and live as ‘normally’ as we can, whatever that means. The surgeons said that most of the tumour was removed but they are monitoring Kelly to check that it does not grow back. Straight after the operation she had lots of problems understanding what was said and struggled with speech. This got a bit better over the months, but there are definitely still problems. I have cut down on my work days to look after Kelly and Margo, our daughter. Kelly’s Mum comes and helps three times a week, so I feel guilty if I ask for more help to get some time to myself on the weekends. However, the psychologist I see believes I may be a better carer if I look after my own needs too, so I’m thinking of a regular golf morning on the weekends.”
Carer stories: Alice
“Our lives have changed dramatically since Jack’s diagnosis. What we find important has changed. We had lots of plans for when the children left home, but that has changed now that Jack has moved back home. It is rare that we leave him on his own. He’d mainly be okay I guess, but I worry about the seizures. With the weakness in his arm and leg he can’t move around as easily as he used to. Possibly, the most difficult adjustment though, is coming to terms with his mood and behaviour. He used to be very upbeat with so much zest for life, but now he has mood swings and his attitude to life is quite different. Although at times, it feels like I’ve gone back to being a mother to a younger child, on the whole I cherish our time together. I want to do everything possible to keep him well and happy, but it’s hard at times”
Carer stories: Hattie
“Since her surgery, Kirra needs a walker to get around. She gets tired very easily. I help her to get in and out of the shower. I do most of the cooking, but we do have meals on wheels twice a week to give me a break. Kirra also struggles to talk now, and often sounds very confused. So at times it’s hard to work out what she is asking for. I make and attend all of her medical appointments and make sure she is taking her medication properly. It is quite exhausting at times and I don’t get a lot of time to look after the house and garden. We had an appointment with a hospital social worker who is helping us to get some extra help.”