Walk a Mile in... Babs' Shoes
Babs cared for her late husband, her mother and latterly her neighbour. Over the years she has dealt with many different situations and challenges, including caring for 2 people who lived in different households and learning to communicate with her mother after she suffered a stroke. Hear Babs’ story including the good, the difficult, the rewarding, the sad and the funny side of caring.
Listen to Babs' story to find out what it's like to walk a mile in her shoes. You can also watch the short video where Bab's explain's how caring is hard work but equally has it's rewards.
You can also read her story below.
"I’ve been a carer for about 25 years. I looked after my late husband and, after that, my mother. Then, latterly for our next door neighbour. The last 4 years of my caring time I had assistance from my new husband. So 25 years or possibly even more.
"I think one of the first things is to realise that you actually are a carer. A lot of people just think ‘Oh, it’s my husband. I’d just look after him as normal and do these extra bits because he’s not very well or whatever.’ But there’s a lot more to it than that. Becoming a carer, as a full time carer, is very, very hard work. And it’s necessary to get a lot of support in doing that. Caring brings an awful lot of frustrations, a lot of challenges and equally a lot of joy. The challenges and the frustrations don’t come all at once, it’s a matter that evolves and you learn to cope with them as the days go by. There is no manual for being a carer. It’s like having your first child; there is no manual for parenthood. You have to learn as you go along. My first problem was that my husband became very ill suddenly while our son was 3 years old and this happened 3 weeks after I had lost my father. My mother, at that time, was nearly 80. Not only did I have to look after my husband and a 3-year old child who was borderline hyperactive but also my mother, in 2 separate households. This I did for about 5 years. It was very, very difficult because I had to deal with all the budgeting, the household management in general, physical care of both of them at a distance of 5 miles. At that time which is quite a number of years ago now, there was very little help out there that we could turn to. Fortunately, when my mother had a stroke, I was able to have carers coming in but this wasn’t until some years after losing my father and my husband becoming ill. Unfortunately my husband passed away 5 years later but the dual situation had lasted for about 5 years. During that time I learnt a very great deal about being a carer.
"There are quite a lot of physical challenges, for example coping with somebody in a wheelchair; problems with mobility - getting people in and out of cars, transferring them from one place to another even if it’s just a transfer on a chair. Walking in town - it’s amazing how many people see a wheelchair coming and won’t get out of the way. Taking people to hospital - you have to wait for a long, long time; you’re negotiating a lot of different departments, not just in the hospitals but lots of different forms need to be filled in throughout different organisations. At that moment there doesn’t appear to be much coordination; you have to keep giving this information out. Taking somebody to the bank for instance was a problem because my mother had a stroke and she couldn’t communicate. So if I was to take her to the bank which she insisted on doing and she wanted to talk to the teller, or the manager. Because she couldn’t communicate, I had to try to surmise what she wanted to say. But the very fact that she wanted to go to the bank would mean that it took almost a day to take her.
"In the early days, for me, about 25 years ago, there was a lack of support from public bodies and voluntary organisations. Fortunately, we now have something like Creative Carers who not only provide the mental help and support but there’s also the joy of meeting other people in an organisation; being yourself for two or three hours, doing some of things you want to do. One of the main frustrations, I found, was lack of money because carers’ allowance does not cover the expenses that are required to look after your caree, in addition to the money that they get, which means that you haven’t got very much money to spend on yourself. If, like me, you had to give up work, there is some drop in income and lack of contribution to pension and so on which has a knock-on effect. Now that I’m retired, I’m on a very, very low income. I’m managing, my husband and I are managing. We’re on a low income but if I hadn’t given up work, I would have had a good pension. So, that’s one of the frustrations.
"However, one of the joys of being a carer is to see the person thriving, to see them hopefully progressing, and to know that you’ve made a valuable contribution to that. One of the major problems for full time carers, is that it is a 24/7 operation. Very often I was up during the night and, latterly, when we were looking after our next door neighbour who was doubly incontinent, we’d have to go in in the middle of the night. He’d ring us and we’d have to clean him up, give him fresh bedding, do all his washing for him and make everything ready for the next day in case it was needed again. It’s exhausting, and this is where I would recommend that any carer makes a point of realising that they are actually more important than the caree. It sounds cruel to say that, but at the same time, if the carer goes down and there is no immediate support, the situation can implode and become considerably worse. If the caree knows that he or she is being cared for, and you know that there is some support there, that’s great. If the carer goes down and that support is not there, it opens up very, very many more problems which have to be picked up in emergency and crisis situations. So, it’s always a good idea to not only have support from official organisations but wherever possible from your own family. Another frustration of being a carer with a family is that there is an impact on the rest of the family as well. Whether you’ve got young children, elderly parents or a spouse, in some way or another they are going to be affected. So they have to be taken into consideration and it’s important, if possible, to get other members of the family, or friends, or some other official organisation to be able to provide that support, just in case the carer goes down.
"In the latter years, there have been a lot more organisations that can provide support, which has been absolutely wonderful. I was fortunate enough to meet somebody very special 7 years ago and married him. As it happened, he’s got considerable medical experience and we were both looking after our next door neighbour. I looked after him for 4 years before my new husband came along and after that I had a tremendous amount of support.
"There are so many joys of seeing someone improving, thriving or, at least, staying as they are and not getting worse. To see a smile on a caree’s face when they’ve been in pain; to see a smile on their face when they were frustrated and the problem’s been sorted out; to help them to do something that they desperately need to do but is so difficult for them; to be able to integrate them with the non-cared for-community; to make them feel that they are part of life still. My mother, having had a stroke, was unable to speak. She spoke in gobbledegook most of the time. There were some words that she did get out that were completely irrelevant to what we were trying to talk about. There were many times that she was demanding things and was so frustrated that she didn’t understand that I didn’t understand. Eventually we managed to work something out by gestures and facial expressions and noises that she was able to make. One funny time, and we made a lot of fun out of it as well, but lovingly not out of malice. We used to tease her about something. My son, having grown up at that time, was a dreadful tease for her and the carers would come in and it would just be hilarious. The fact she was part of the family, and part of a loving environment, made all the difference to us. One time, she was so frustrated and she was shouting at me in gobbledegook. She eventually managed to get out the words ‘I want a teapot on my head’ and, of course, obviously, I could get a teapot and put it on her head. But that probably wasn’t what she wanted. We eventually worked out, after about half an hour, that she wanted her handbag out of the wardrobe. This was one of the frustrations that we had to cope with but we turned it round and we made it laughter.
"As a carer, to stand back and see this happening and to see my mother laughing, even though she had such terrible problems; to see her relaxed and keep both of them at home, was a tremendous reward for me.
"There was another funny thing about my mother. We bought her a big teddy bear because she loved teddy bears. We bought her a huge teddy bear and what she didn’t know was that we put a camcorder on a table facing her because we knew she would pick this teddy bear up and cuddle it and talk to it in gobbledegook, just as a child would, and that’s something I’ve kept. It’s a very, very precious thing. I can’t put a price on that. That sort of reward is wonderful. There is no point in thinking that caring is easy because most of the time it isn’t. It’s hard work. You have to keep a sense of humour; you have to keep on top of things. Fortunately, there’s a lot of support out there. I go to Creative Carers on a regular basis. I have friends there, I’ve met some lovely friends there. They are able to do things free of charge which helps because we haven’t got money, being carers on a carer’s allowance and so on. There is support there; it’s like a pseudo family. There are plenty of organisations out there that are for specific disabilities. Creative Carers is all-inclusive. I would say to any new carer ‘seek out what help there is for you’. There is help all over the place. Sometimes you have to look for it; sometimes you can go to an organisation that can act as a hub and can signpost you.
"But don’t give up. Caring is hard work and it’s rewarding. I know, at the end of my life, I can look back and say ‘I did my best. It might not have been the right thing to do, but I did my best and I’m satisfied’. That is reward in itself."