The Wholehearted Carer

What do I think I arsed up? I can get so grumpy having paid carers/personal assistants in my house sometimes … and I can’t hide that I wish they weren’t there … especially if I just want time in the house on my own or with direct family and friends.

Feeling : Lack of personal space, irritation, frustration, guilt at feeling any of this when they’re just doing their job and trying to support us!

Thought to self: ‘AAAARGH I JUST WANT MY OWN SPACE IN MY OWN HOUSE, I CAN’T RELAX!’ Quickly followed by , ‘these are good people doing the job they’re being paid to do and helping you have time out from caring for B. Be respectful. Be kind. Be patient. Swallow those negative feelings now.’

Reality Check ( aka ‘What I’d say to a friend in the same situ’): This isn’t normal. It’s OK to feel these negative feelings, own them, don’t swallow them, that’s never healthy. Most individuals don’t have to have folk beyond who they choose to live with, in their personal space, so regularly. It’s ok to want time alone or with direct family in your own house. This is to support not inhibit you. You may, for example, have a strong desire to spend the time out lying around bra-less, eating Nutella out the jar with a spoon and watching Hannibal at midday … without judgement. Paid carer’s may inhibit this freedom. This is an invasion of your personal space to meet B’s needs, but you need to weigh it up against the benefits to you and yours of getting time out from caring. These people are good people and they have shown care for you and B, and they will get it if you explain. That said it’s not ok to be grumpy or rude to them, so apologise if you were, but explain.

What I learn for next time : If I’ve been grumpy and/or rude I do need to apologise, but I also need to communicate with the carer’s and explain my needs or the wider families need for personal space in our own home. ‘Hi, I just want to discuss my freedom to lie around bra-less,eating Nutella out the jar with a spoon, watching Hannibal during your shift’ ;-). There may be a need for some compromise. We need to set boundaries that protects our space whilst meeting B’s needs and respecting the carer’s. We are lucky that since garage conversion there is everything the carer could need in B’s space. It’s OK to ask them to stay in that space so the rest of the family can feel free in their own home. Alternatively, I could suggest the carer takes B out and organise somewhere for them to go. Transport has been an issue in past as not all carer’s are willing or insured for Wheelchair Accessible Vehicle but maybe moving forwards that has to be a requirement for the post. If a carer doesn’t understand and isn’t willing to drive the WAV, go out or stay in B’s space, then that’s OK they’re just maybe not a good fit for us, find a carer who is ( I know, in this time of carer crisis, this is easier said than done, but time has shown me that carer’s need to be a good fit for everyone in the house, not just B).

And then like a Disney Princess ‘Let it go, let it go’