My name is Kathlyn. I am 81 years old and I care for my husband. He started off last year with rheumatoid arthritis and was in the Royal and he was transferred to the community hospital. When he came out, he couldn’t walk. A care package was set up, but it was really just the basics. There has been a complete change in our lifestyle. I can’t stay away overnight or go away at the weekend anymore. I realised I don’t have my independence anymore. I’m very much on call. The change in our lifestyle led me to realise that I’m a carer now. I met Rowena (CoEL Hospital Link Worker) when my husband was in the Community Hospital. I hadn’t come across Carers of East Lothian before. It was great to have that information at that point.
Carers come in to support my husband 4 times a day and do the personal care. He has urinary incontinence, and he needs help getting to the commode. They are doing that side of things, but every other responsibility is mine. Everything…suddenly. The garden, the maintenance in the house, the bills, all of the practical side, the cooking. He used to cook a lot, he was very creative, but now I do it. We used to each have our own roles. It’s quite a shift. He was very active and spent a lot of time in his office and could deal with these things, but he has macular degeneration, and he can’t see the computer screen now. I do find it is a lot for me on my own. It is wonderful having carers, but you find that your house is not your own. They are wonderful, I would never say anything against them, but I think “oh my, here they are!” We have a core team of carers that we are getting to know very well. They are very friendly. They spend time with him and chat with him, which is good for his mental stimulation. I’d be completely lost without them.
When he first came home, he lived upstairs for 9 months. I had to go up and down the stairs many times a day. He’s moved downstairs now, and it has helped us both a lot because it’s much easier for him to move around the lower level of the house. He was cut off upstairs. He can eat at the table now and go into the garden. To try and get him walking, he uses a zimmer but I must follow him with a wheelchair because he is very worried about falling. You don’t have any choice but to cope. This is how it is. I just have to get on with it.
I like to go to events and have a change. It’s quite cheering. It is comforting knowing the support from Carers of East Lothian is there. It’s reassuring knowing that you’re not on your own. You realise you are speaking the same language, coming from the same viewpoint. I can call Rowena if I am feeling ‘help!’ I’m not isolated. It’s wonderful to have Rowena. She’s very supportive. We worked together to apply for attendance allowance and we completed an adult carer support plan together which led to us receiving a week’s respite* Because of that, I’ll be going away with my daughter.
I attend a walking group every Friday and a music group. If I am out walking, I quite like to cut off. When I am enjoying nature, going through the woods, or on the beach, I don’t really want to be talking about caring. It’s great relaxation, just to switch off. If you’re out in nature, you just open up to that. I like to go to concerts when I can, and I have a good group of local friends and I go to a yoga class. I am a member of the local history society and the antiquarians. It’s important for me to have mental stimulation. It’s only possible for me to do this because the carers come in during the day.
We can’t do things together anymore. He can’t really cope with a wheelchair, and I can’t really manage the weight of it either. If we wanted to go out, I would need the help of someone else with that. You’re always on duty. You’re never really free.
If I could give advice to someone who had just become an unpaid carer, I’d say that you have to look after yourself as well. You’ve got to keep your sanity, your happiness and try not to get bogged down or feel guilty about it. Otherwise, you are no use to the person that you care for. Don’t give up your life! And having someone that you can speak to who understands is important. It’s important for me to keep going, for my family and my grandchildren. I wouldn’t want to worry them. I want them to be able to come into the house and us all be able to smile together.
*ACSP was reviewed by East Lothian Health and Social Care Partnership. A need for a break was established due to the impact of caring upon the carer.
The photograph accompanying this story is of a ceanothus bush in Kathlyn’s garden where she finds moments of calm.