Matching The Carer To The Caree - Victoria Bartle
Choosing a care company is a difficult process. When I started receiving care I was sent a list from the local council of the companies that they use. I looked them all up online, read their websites and narrowed my choices down to a few that I thought seemed the best fit for me. After a few phone calls, I got it down to three companies that I arranged to meet with to discuss what they could provide and how they could respond to me needs.
This method proved unsuccessful as I had a number of problems with the first care company that I employed. When I then needed to find a replacement company I learnt about CQC (Care Quality Commission) reports, so I had some additional information to hand with which to make a more informed choice. I met with a couple of companies again and decided which to go with.
However, choosing the company is simply the start of the process. Next, you have to meet the individuals who are going to provide the care to you, make sure you get on with them, ensure they have the skills for the tasks that you need them to do as well as navigating the admin process of organising times, length, frequency etc for your calls, billing and payment as well as who to contact if anything goes wrong.
Organising care is exhausting
There’s so much more to organising a care package than you might first think, as, for example, the admin and office staff are just as important as the carers themselves.
Personally, I organised all of my care myself. I initially requested support through my local council, who start the process to see what help they can offer, both physically and financially. A Social Worker came to my house to meet me, discuss my needs and explain what they could offer. I had to complete a financial assessment and speak to someone in that department as well. When they determined that I didn’t qualify for financial support I decided to manage the process myself as if I’d relied on the council to organise the care I wouldn’t have been able to choose which company to use, and would have also had to pay them a fee to manage my care which I didn’t think I could afford. From a list provided by the council I decided which companies to use, managed the bills and payments, sent a requested rota through to the office to organise calls each month, completed all paperwork and managed any subsequent issues that arose. I didn’t require a particularly significant or complex package of care, so I managed to do it all myself, but it would have been so helpful if I’d had someone else who could have taken this responsibility from me. When you have chronic fatigue and anxiety, even something as simple as calling to see why a carer is late can feel like a huge task, and I’m sure people with other conditions also find it hard work to manage their care.
One friend of mine has direct payments (a system where the council pays the amount they determine you are entitled to to pay for care to the client themselves in order for you to choose who to use and how to organise the hours to make the care you receive more individualised) and manages her team of PA’s (Personal assistants is another term for professional carers which some clients prefer to use) with the support of a company, but that is still a big task for her to do. It is especially difficult for her at times when her symptoms are bad and affecting her physical and mental health. When you’re already dealing with a challenging condition, the last thing you want to have to do when simply trying to get through the day is additional admin, managing people or dealing with the financial aspects of engaging care companies. When things go right, it does make life so much easier having care and support, even when there is some added admin to do to make it all happen. But, when things go wrong, it can exacerbate existing conditions, cause flare ups and even put people off receiving care altogether.
My issues with the first company I employed were mainly around the admin of care. I would have missed calls, carers who were rota’d in for times when I had said I wouldn’t be home and incorrect bills. I felt as if I was constantly emailing or calling the office to try and sort things out. I couldn’t take the extra stress and additional tasks that I had to do and ultimately changed companies to one where the admin side of the business was much more organised so, instead of adding to my stress, the care actually reduced it and provided the support that I needed.
Having someone you don’t know in your house is weird - high levels of empathy and understanding are needed.
Obviously, you need to get on with the people providing care for you or your family members and sometimes you just don't click with someone. This is a very personal thing and doesn’t mean that a carer is good or bad at their job. However, in these instances, it’s worth making a change quickly. Other times it might take a while to figure out that you're just not compatible. I found that the carer who didn’t say hello to my cat and give her a stroke when she arrived started to annoy me. It sounds a bit silly I know, but my cat tends to sleep on the back of the sofa near the dining table, so my carers had to walk past her to clock in, get my file and start the call. So I really noticed when someone didn’t pay her any attention. I liked the fact that the others always paid her a bit of attention and it made me feel more comfortable and started the call off on a positive note. It also gave us the opportunity to talk about pets and build a rapport over something we had in common.
You can feel silly asking people to do things in a specific way - patience and attention to detail are essential.
Everyone does things differently and if you have a chronic illness you tend to get into specific routines and habits in order to save energy. I have my cupboards arranged very specifically so that I know where everything is and that makes life easier for me. Chopping food is another thing that stood out for me early in my experience of receiving care as I eat very similar meals every day and I wanted the carers to chop up my fruit and carrots for me. I have an apple and a pear as a snack and a bowl of fruit salad after my tea everyday, and I eat lots of roasted carrots as they go with pretty much anything and are nice and healthy. So it was a job that I thought that the carers could do easily for me, however, I soon realised that I cut things up in a specific way, and I like how I do it as it makes it easier for me to eat.
Asking someone to chop food seems self explanatory, but I like my apple and pear chopped into segments - avoiding the core, but getting as much fruit as possible, with skin left on and any brown bits chopped out. But that’s just me. I know that my mum likes her apple peeled then cut into bite sized segments, for example, so I appreciate that we are all different. I did explain to my carer how I wanted my fruit cut up, but I felt utterly ridiculous asking a carer to chop fruit in a very specific way! Then I moved onto my melon, cut into “smiles” with the skin left on, some strawberries, with the stalk cut off and chopped in half, and some grapes, about the same number as the strawberries. The next job I wanted done was to prepare my carrots for roasting. Chopping carrots is generally a straight forward job where you peel them, cut off both ends and slice into little discs. For roasting however, I like a big chunk, kind of like a potato wedge, so I had to explain this process in detail as well. This was just my food prep! I did feel embarrassed and very particular when I asked for my food to be prepared in such specific ways, and apologised a lot when I was explaining the process to the carer, but then I had to tell every new carer who came to assist me how to do it. I imagined I was the topic of conversation at the next meeting as they all laughed about how obsessive I was about chopping! I’ll not even go into my issues with hanging washing on my clothes horse...I had to ask for one carer not to come back as she just wouldn’t do it how I liked it, which meant that it wouldn’t dry as quickly and needed more ironing, so ultimately I was saving time and energy in the long run, but I felt absolutely awful explaining that to the office team as it seemed so petty.
Teaching someone to do things is exhausting - life skills are an essential part of being a carer.
If you can’t cook, but the client, like me, needs someone who can make a more substantial lunch rather than having a sandwich or microwaved meal, then it’s not going to work. I was able to get my carers to cook me one pot meals such as a curry, chilli or a stir fry for example, but this was because they already had the basic skills. They knew how to chop an onion, what the different herbs were and how to tell when things are cooked properly.
A friend of mine has a carer who doesn’t know how to cook eggs in any way other than hard boiled or scrambled in the microwave. This would be fine if she had the energy to stand with her in the kitchen and teach her how to make an omelette or fried egg, but she also doesn’t know how to tell if something is cooked or not so it wouldn’t be a quick explanation and my friend doesn’t have the energy to deliver a full cookery lesson. Not having the time and energy to teach people things isn’t limited to cooking either. I had a carer who had no idea how to hang laundry on a clothes horse and after two attempts at explaining how to do it I gave up and asked for someone else. When you’ve got limited energy and short care visits, using that time and energy to teach people things isn’t a realistic and beneficial use of anyone’s time. So some basic skills, or the ability to learn quickly may be a requirement for some people when choosing carers.
We all have our own preconceptions, stereotypes and ideas around who we will and won’t get on with. Don’t take it personally, it’s me not you - resilience and a thick skin are a benefit to working in care.
When you work with the public you learn quickly to adapt your vocabulary, tone and speech patterns to create empathy, rapport and develop relationships. But even so, sometimes, it just isn’t going to work.
Before I started to receive care I had made some assumptions about the age of the carers that I’d prefer to help me and therefore asked for carers who were about my age. I thought that I’d find it difficult to ask people who were older than me to help me as I’d feel as if I should be doing it. I also thought that I’d be judged and would feel embarrassed getting them to hang out my laundry and help with personal care. I thought that I’d struggle with younger carers as I felt that they wouldn’t be able to understand chronic fatigue and invisible illnesses and might just think I was lazy.
However, I was completely wrong in my assumptions. I found that I had two carers that I had to ask not to be assigned to me as I felt uncomfortable with them. One lady, who was a bit older than me, reminded me of my granny which I found really challenging. This woman was really nice, warm and lovely but I felt as if I was asking my granny to wait on me when I was asking her to do things. I felt really uncomfortable and just couldn’t do it. I kept wanting to get up and help her, or make her a cup of tea so it really didn’t work as the visits were making me really stressed and upset.
The younger carer that I asked not to have any more was for other reasons. She had lots of empathy for me and my conditions, she asked lots of relevant questions and was keen to help however she could, but I couldn’t cope with her speed. She did something, then stopped while we chatted and seemed incapable of multitasking which I found very frustrating. I kept wanting to tell her to get on with the jobs whilst we were talking, which felt really rude, so it felt better all round if I just asked for her not to be assigned to me anymore.
It’s embarrassing not being able to do things for yourself, and you can feel open to judgement from carers - having an open mind, treating everyone as you would like to be treated and not judging is vital for carers.
I was brought up to be independent and believing that relying on others for help was a negative. It shouldn’t be seen this way, and it is something that I’m working on - to try and be more open to asking for and receiving help – but nonetheless, I always felt that being able to look after yourself completely on your own was the goal. So having to ask for and receive help from strangers was really difficult for me. I felt embarrassed, nervous, emotional and very anxious about needing to have carers. However, the attitude of the people who provided my care was amazing, they put me at ease and made me feel as if it was a natural, normal and essential thing to receive care.
Having a fluctuating, invisible condition only made my issues bigger for me, as the carers knew that I went out, spent time with family and friends, did fun things and had a good social life. This made me feel like a bit of a fake asking them to do jobs for me that I technically could do, to some extent, but if I did do them all I wouldn’t have any quality of life as they would take me so much longer to complete. So, having people do the basic, essential tasks around the house meant that I could continue to enjoy my social life as I wasn’t using all of my energy on the day to day things. I still worried that they’d be judging me, though, so any mention of benefit frauds or negative views on disabilities pricked my attention and made me worry about what that person thought about me. I never felt like the stereotypical person who received care, which was entirely derived from my own stereotypes and preconceived ideas. I wasn’t old, I wasn’t terminally ill and I wasn’t fully housebound, so I even asked the care companies that I interviewed if they had clients with similar conditions and situations to me so that I wouldn’t feel judged or worried about people thinking I was faking due to my fluctuating conditions. The fact that I never really “look sick” was also a concern for me, but once I’d got to know my carers a little I realised that they really weren’t bothered about how I looked, if I had make-up on, or if I was going out after they’d been for my call. They just wanted to help and do their jobs well.
If you’ve already been providing care for a child, friend or family member then you’ll be able to appreciate the complications involved in organising care, the feelings and emotions that are raised when receiving care, as well as the life skills needed to be able to support someone to remain independent in their own home.
I think that having some personal experience of care makes for an ideal care worker, as you’ll be able to empathise, communicate with and appreciate the challenges faced by the person receiving care, as well as the challenges faced by their own support network of family and friends who may also be finding the process difficult to come to terms with.
I’ve received care myself, delivered it to a family member and supported a friend to organise her care so I have a few different perspectives on the whole experience. In my mind, the ideal care worker is kind, considerate, practical, efficient, empathetic, non judgemental and able to put people at ease. They also have life skills, are proactive, fun and committed to delivering an often uncomfortable service to the client in a positive and empowering way. It’s a very challenging, exhausting and emotionally draining role, but ultimately vital to the individual and society as a whole. It’s also extremely valued by all of us receiving it, as well as our friends and family, so gives the carer a great sense of satisfaction and pride at delivering such an important role.