Care giving relationships (particularly unpaid) when caring for disabled people can be difficult to manage for both people in the relationship. For the disabled care receiver it requires a trust and a vulnerability to allow yourself to receive care, and for the care giver it can feel as if you have too much responsibility. Having been, in some ways, on both sides of this relationship, and having seen other care giving relationships in the past, I want to talk about some ways to balance, or at least keep an eye on what can be a tricky dynamic.
Something that I have noticed that comes back often, when something goes wrong in a care relationship, is that the disabled person often receives a lot, if not all of the blame. I think this is because we live in a society which, even if not explicitly, sees people with different care needs as needy and a burden. Therefore, the caregiver is seen as self-sacrificial in the care that they give – sometimes almost to the extentent that they can do no wrong. But of course it takes two to tango in a relationship; there’s no relation without two, and therefore I think it is really important to acknowledge where and how relationships require both people to actively work on them – especially when they involve tricky dynamics like care.
Communicate, communicate, communicate
As we hear, time and time again, good relationships require continuous, open communication. I cannot emphasise enough how important good communication is in a care giving relationship. I feel this is the point where most relationships go wrong.
It can be very tricky to communicate openly in a care relationship because often pesky emotions get in the way. As a carer, guilt in not being able to help as much as you may want, or not being there all the time, can become a really big problem. A lot of people respond to this by ignoring their own needs and not speaking up. But in the long run this isn’t sustainable. Care-giver guilt can make it incredibly hard to be honest about how you are feeling about your role as caregiver. However, in order to sustain a relationship, and give the person you are caring for the respect they deserve, it is really important to communicate your emotions to them.
For somebody being cared for, it can also be difficult to be honest, due to the feeling that you are a burden, to guilt about needing the help that you do, and also to shame about needing to ask for help. It is notoriously difficult to ask for help, particularly when you require ongoing support, and that can make it very difficult to be honest about your needs.
At the end of the day, a care relationship only works well if there is total trust between you. Being able to communicate your needs and emotions very openly allows you to build the level of trust required for such a relationship.
Set boundaries and expectations
In a good care relationship, it is important to set boundaries and expectations about what care is possible, how regularly, and how that will work. Not only do these boundaries need to be set early, they need to be regularly revisited and upheld. It can be easy on both sides to overstep each other’s boundaries, and that needs to be addressed at the time, otherwise it can grow into resentment. Sticking to these boundaries, respecting them and enforcing them kindly but firmly affirms the trust that needs to be there and allows it to grow.
When boundaries and expectations have not been explicitly spoken about and set, it is also important to realise that these are implicitly set through the way that you interact with each other. If you cook dinner for someone five nights a week for a long period of time, it is a very fair and normal assumption on their behalf to expect that you will continue to do so and you are okay with that.
If you say you will do something, do it.
This might seem quite obvious, but if you say you will help someone with something, do it, or let them know in advance. You would be surprised at how many nice, caring people seem to forget this one. It used to happen fairly often to me at university. Someone would offer to cook me dinner because they knew I was really sick, I would say ‘yes please’, and then spend the whole evening waiting for that person to come and cook for me. They would then message, quite late in the evening, saying something along the lines of ‘sorry I ended up doing thing x’. Ultimately, that meant that I would go without dinner because I was too sick to cook or go and get groceries, or I would have to call someone as an emergency – not fair on either me on that other person. If you can’t reliably do it, don’t offer – and if you have said you will do it, do it.
Changes in boundaries should be communicated early
It is only natural that, over time, with long-term care relationships, boundaries will change. The caregiver might get a new job, a new partner, or a thousand other things may happen to change how much time and energy someone can give to caring. Although this may be hard to accept, because it can be scary and hard to learn to trust a new carer, it’s important to let someone do this without feeling guilty.
At the same time, when you have been consistently giving a certain type of care, you need to plan in advance as much as you can for any change in situation. How can you hand over your care responsibilities? What can and will you still be able to do? Leaving someone without care, very suddenly, is not only irresponsible, it can also be very dangerous. Particularly when you add in the fact that many people with unpaid carers are in that situation because they cannot afford to throw money at their care. So finding someone to take over your responsibilities is not something that can happen immediately (even if money was abundant – and certainly, with the care crisis in the UK for example, nothing moves fast). Once more, this comes down to good communication.
Carer burnout
Carer burnout is very real but is something that can usually be avoided through keeping and maintaining good boundaries and maintaining communication. As a carer, it is so important to keep aware of your mental and physical health, and not keep pushing it back “for the sake of the person you are caring for”.
In reality, burnout is the build-up effect of consistently ignoring your needs and failing to set or keep to your boundaries. Sometimes it can be hard to avoid it, when real life is happening and there are a billion things to do at once, but what is important, once again, is that if you feel you are beginning to burn out, communicate with the person you are caring for. Let them know, and together you can figure out how to address both your needs and reduce your load. But letting it build up and build up without communicating will inevitably lead to problems that will significantly hurt both you and the person you are caring for, and potentially leave them in a very vulnerable, even dangerous position with no care.
Many people who need care have had carers just up and ditch them without prior warning and this can be very traumatic. The more this happens, the harder it is for a disabled person to feel they deserve the care they need, the more they feel like a burden, and the harder it is to trust the next person who cares for them. If this is dealt with in a mature and empathetic way, this doesn’t need to be the case – which is obviously better. Whilst a carer can heal from carer burnout and not need to re-enter that sort of relationship again, when you require help with care, you do not have the luxury of taking time out to heal from suddenly being rejected. So, on both sides, it is just better if things are communicated openly and dealt with together.
Care should not be weaponised
What do I mean by this? If you argue – as occasionally happens – a person’s care should not be used as a bribe to force them into agreeing with you or doing something they want; nor should threats be made to remove care, in order to win a fight. In fact, even if you are fighting, it is still not an excuse to refuse to carry out any care you have promised to do. When you are responsible for someone’s basic needs, whether you are angry at them at that moment or not, those needs should be met in some way or another. It can be tempting to wield that power over someone but, in reality, this is actually an abusive act. Care relationships involve trust, and if you start using the power of being carer to get your own way, that trust is being hugely abused.
Remember that you have a relationship beyond any issues of care
Sometimes, when care relationships get tense and stressed, it can be difficult to remember that you have a relationship beyond that of the care giver-receiver dynamic. It is important to try to cherish, feed and allow the friendship or lover aspect of a relationship to flourish as well. Try and plan in time to do the things you enjoy doing together, show gratitude towards each other for being in each other’s lives and, in general, remember to still do the things that friends/lovers do.
At the end of the day, a good care relationship comes down to respect, communication and trust – and this must always run both ways, if the relationship is to thrive.
If you enjoyed this post feel free to have a peruse of my blog, or join the mailing list to get each new blog post straight to your inbox. If you are able to I have a Ko-Fi where you can either give a one off donation to cover my next coffee, or you can sign up to a monthly subscription where you will receive amazing rewards such as copies of my disabled fairy tale series.
