On having a “carer”

By now I am a veteran at completing application/review forms for Employment and Support Allowance (ESA) and Personal Independence Payment (PIP). ESA is for people who are too sick to work, while PIP is to cover extra expenses associated with being disabled and can be claimed whether working or not. The standard suggestion by advice agencies is to explain your condition in terms of your worst day. A “mustn’t grumble” traditional British attitude, or answering questions on a good day while pushing the horrible times to the back of your mind, will make you look like there is nothing much wrong with you, and means you are unlikely to get the money that you deserve.

Because my condition is very complex, for each question about daily living I have to answer in four ways:

  1. How I can or cannot cope on a depressed day
  2. How I can or cannot cope when hypomanic
  3. How I can or cannot cope in a mixed mood state
  4. How acute anxiety affects my ability to cope.

I always have to stress in every question that I am a rapid cycler, so that in addition to perpetual anxiety I could wake up any day depressed, hypomanic or mixed. That is the most disabling aspect of my condition, and the one that makes me unable to take on a job.

For each activity, I have to say whether I need supervision or “prompting” to manage daily living on a given day. For example, when I am hypomanic I may need prompting to stop and eat, and I may need supervision to cook because I am so distractible I do things like leave the gas on. When I am mixed and suicidal I need prompting to take diazepam, undertake distracting activities and tell professionals what is really going on, and I need supervision around meds and going out alone for my own safety.

Who does the prompting and supervising? Tom, of course. One of the most depressing things about filling in the forms is that it highlights just how often my husband becomes my carer. Neither of us want that. I don’t think he actually sees himself as my carer, and when I thank him for looking after me, he looks a bit baffled and says, “You’re my wife!” But right I do feel like he is my carer, because I need so much prompting to do daily things and protection from myself. I’ve been depressed for days now and fighting urges to overdose, so now Tom is holding onto any meds that could harm me. Today I woke up again feeling low from the get-go and within a few minutes, I was crying. I really needed to wash my hair, but I just couldn’t. Right now a bath feels comforting but washing my body is difficult, and washing my hair feels like a step beyond what I cam capable of. When Tom offered to wash my hair for me, I cried harder, because of his kindness.

In the end I was able to wash my hair with the “prompting” of him being in the room as encouragement, but drying it was just impossible. So he blow dried it for me, something he has never done before. It was kind of relaxing, but also kind of depressing because he had had to step in like that. I cried all the way through. Next, he helped me pick out some clean clothes to wear. I managed fresh knickers myself but he helped me find a clean vest top and a jumper, so that I will be warm and comfortable today. This gave me the courage to find some clean socks (I had been wearing the same one for god knows how many days).

This afternoon I have a podiatry appointment. It’s at the general hospital, where I have never been before, and I have to find the right department. Although on a good day I could take the bus to the hospital by myself, right now that feels like too much, and the actual hospital part would probably be beyond what my anxiety would allow on any day. So he’s taking me there. He’s already taken me to physio this week and is taking me to Emotional Coping Skills group tomorrow. All of these are things that I should be able to access on my own by public transport, but right now I just can’t. Left to my own devices I would’ve ditched physio and certainly not shown up for podiatry, which seems like the least important of all the things I need to do this week. I would, of course, regret that decision later.

I need help cooking and avoiding a diet which is just crisps and Coke. We have just received a Tesco order full of things that are easy to make – pizzas, tortilla wraps, jacket potatoes – but lately I have found myself grinding to a halt during simple tasks like chopping vegetables for salad. Anyone who follows me on Twitter will know that normally I love to cook, so eating oven chips feels like a defeat, let alone having to hand over food prep to Tom. It also engenders guilt. He looks after me in so many ways and one of the key ways I look after him is meal planning and preparation.  When I can’t produce nice, nutrious food I feel like a failure.

So today he is my carer and I hate it. I’m getting good support from the Community Mental Health Team – my Community Psychiatric Nurse came yesterday and is coming again tomorrow, mainly to flag me up with the Crisis Team in case I need to access them over the weekend. I’m being encouraged to make good use of diazepam, something Tom mostly has to prompt me to do, and today I need him to drop me off at the GP surgery so I can put in a request for more (I’m getting through it at a rate of 2-3 x 5mg a day, rather than one or two a week). Whether the request will be granted is, of course, another thing for me to feel anxious about, although I know my CPN and consultant will get involved if the GPs are funny about it.

I hate this. I hate having to be prompted, I hate having to be supervised, I hate needing a carer. I hate being the person I have to describe in my ESA and PIP forms. I want to be strong and independent and able to look after myself. But I can’t and I’m not, and yet again the suddenness and severity of this episode has taken me completely by surprise, just as I describe in the forms. It’s nice to be cared for, but it’s not nice to need a carer. There’s a big distinction there. I feel very disempowered and very pessimistic. What if I didn’t have Tom? What if he wasn’t around to be my “carer”? These worries feed into my suicidal thinking, which of course makes me need to depend on me more. What a catch-22 the depressive mindset is.

Image shows a person with unwashed hair covering their face with their hands and is taken from Flickr. Commercial use and modifications are allowed. Image by viviandnguyen_



About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
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