Being in the situation of being a carer, especially since a bit of a crisis towards the end of last year, when everything got so much more difficult, I have been trying to write something about being offered help, and all the complexities around that. Not finding it easy to be very coherent, but here’s a few thoughts I’m trying to put a shape on.
Obviously, the main point is that I am the helper most of the time. It’s not easy being the helpee, when you are depending on others for all sorts of things you used to be able to do for yourself. In the past I had the experience of actually being abused by a disabled partner, who took out on me his frustrations at being so dependent. I suspect this is a lot more common than people let on – none of us wants to complain when we know the disabled person has so much more to deal with than we do. I know that, for me, the lesson I have learned from this experience is that if I ever become disabled myself, I am quite sure I will find it unbearably frustrating not to be able to do things for myself, but the challenge of that is to be able to bear the disability with dignity, and to give one’s care-givers their dignity too.
But it’s the others outside the situation who want to help, or who I need to help, to be a bit of support for me, give me a break, that I want to write about.
The point is that not all the help that’s offered, or available, is actually helpful. I’ve always known I’d reach a point where I’d need professional care-givers to come in and help me out with my mother. I’d started this before it was strictly necessary, with the plan that I’d have something in place when an emergency struck. It also meant that my mother would be used to having strangers in her house and have learned to accept them, as I know this can be difficult. I didn’t expect it would be so difficult to find this kind of help. But when the emergency struck, the care company I’d been using chose that moment to fall apart.
You’d think that, as at that time I was being woken up 3 or 4 times a night by my mother calling me to help her, and having to physically lift my mother during the day in order to transfer her from bed to chair and back, that I’d really need as much help as I could get, whatever was offered. Yes and No. What I actually needed was very different from what was offered. I needed, above all, to know that if people were coming in to do something that they would turn up at the specified time and not at some random time that could occur within a window of around 3 hours. This was what was on offer from the NHS Care Team, who are amazing people but so overworked that they are never able to plan anything to specific times. So, lovely as they were, they were no help at all. In fact, when the NHS sent an OT to see what they could offer, she was worse than useless. Her whole remit seemed to be to tell me what they couldn’t do - mainly, actually lift a patient. When she got to the point of telling me that the £1000 special electric bed I had just bought for Mother would not have the right mattress and she’d inevitably get bedsores, I had to just shut her up and get her out of the house. And then burst into tears. So much for the NHS.
I’ve written elsewhere about the difficulties of having to cope with having carers coming in - the need to keep track, and make sure everything is set up for them when they come. Of the difficulties of having family members taking over while I go away for a few days’ break. It means that for everything I do that requires carers to come in and help, I need to do a cost-benefit analysis – not money cost, though that is a factor, but cost in terms of the mental effort it takes to set up the carers and keep everything going with them. I had 2 care companies providing all I could cope with – one was unreliable, but flexible in terms of hours etc. The other was totally reliable but insisted on a minimum time of one hour per visit, which was quite unnecessary but at least they came when they said they would and there was consistency. But they were unable to provide a carer on weekends, which is when I needed them, as well as Wednesdays. Sigh! It makes me want to give up on this article just thinking about all this. It’s tedious.
I now have the weekend care-givers I need, so I get both Saturday and Sunday off each week. This means I have to plan Mum’s meals in advance, buy the right stuff and have it out of the freezer, ready for the carers to prepare for her. I’m usually pretty organized about advance planning of meals anyway, but, today, I’ve had to do a weekly grocery shop in between helping Mum have a shower, cooking lunch and getting ready to go out for the evening to a dance class I’ve recently got back to. Plus adding a break or two in there and time for a shower for myself. The kitchen is a mess with dishes unwashed from lunch, and if I don’t get them washed before I go out later, they will still be there tomorrow when the carer comes. I’m like most women, in that I don’t want to leave a mess in the kitchen for the carers, even though I know they’d be only too happy to clean up for me. Hmmmm, maybe I’ll leave the dishes for them. This time.
But then there’s friends and neighbours, right? They want to help, don’t they? Well- true to some extent. Having friends to come in to sit and have a chat and cuppa tea with Mum is nice, and I wish some of her old friends would remember she’s still here and drop in more often from their busy, active lives. Having friends to come and help Mum to the commode is not really something most are prepared to do. ‘It’s a boundary too far for me,’ as one of my friends, who used to come in and make lunch for Mum said to me.
Also- having volunteers to come in and help means that they will only come when it suits them. So I’d have to call them up each week to see if they were coming. This is way more trouble than having a paid professional who can be relied on to come in without prompting.
So- what I’m trying to say is that, much as help is needed, it isn’t always as easy to accept as the people offering, or suggesting, it think.
Recently a friend of mine expressed frustration with someone she knew who was looking after a partner with Parkinson’s and who would never accept her offers of help. I understood this. When you are completely overwhelmed you just don’t have the spare capacity to factor outside help in. I have only been able to arrange extra care sessions in the past couple of weeks because things had settled down a bit and I suddenly realized I was going crazy because I was unable to take part in activities that were important to me. But I had spent so many months in emergency mode, just getting through each day as best I could, that I’d lost the ability to relax and step back from it all. I was lucky that the reliable care company had just got a new member of staff who could work weekends. Even more lucky that Mother liked her immediately.
I’d like to say to those of you who would like to offer help to a friend or neighbour who’s struggling with a disabled or sick family member, do offer help. Don’t be offended if the help is turned down. Just keep in touch and think of specific things you can do. Like – doing some grocery shopping for them, or just calling by to chat. Don’t expect your helpee to be able to drop things without prior notice, to go out somewhere. Even when I don’t need to get someone in to look after Mum I am quite tied to a routine which is only slightly variable.
Above all - PLEASE DO NOT lecture your intended helpee on her inability to accept help and imply that she has some kind of psychological problem for turning down your kind offer. This really is the lowest blow, and can really hurt if you are already feeling crap about yourself from exhaustion and the feeling that no matter what you do, it will never be enough.