A basic misunderstanding

“You’re the client.” I have heard this said to me several times by care companies as an explanation of why the focus is mainly on me. Mary and I are a couple and the care allowance we have been granted was granted to benefit us both. It is to enable me to be washed and dressed, but also to give Mary a break. Both of those factors are mentioned in the care statement.

One of the biggest misunderstandings I have come across in care is the idea that I am separable from Mary in care companies’ dealings with us. This can cause huge problems and is the main reason we have seen certain carers as more suitable than others. A carer who ignores Mary is totally unsuitable. As with most people, I may enjoy being the centre of attention, but I don’t enjoy my wife being ignored. You would not believe how blatant and rude it can be. In the past we have had carers who have not even said hello or goodbye to Mary. They respond almost in monosyllables to questions she asks. We are a couple and even though I am the client, my care fully includes Mary. Any care for me must fully involve Mary. If she is in any way excluded or ignored or if her wishes are railroaded, the carer is unsuitable.

If a carer takes over our home, putting things where they think best, without asking Mary, that is only going to cause problems. Imagine coming back and trying to find your coffee cup only to find it has been put in a cupboard you never use, out of your reach. It can negate the benefit of a break if too much hassle is involved in finding everything when you return. It is always best to ask. Mary tends to say to carers “if you don’t know where it goes, leave it on the side, don’t guess.”  

Another area that is overlooked is Mary’s role as my main carer. Because of this role, she always asks the carer as they leave if everything is alright. The purpose of her question is the same as that of a handover in a care home. Are there any issues she needs to know about? You would be amazed how many carers have said to Mary “yes everything is fine.”, having just filled in their care notes details of a problem they’ve found, a mark or bruise that needs monitoring. Because they obviously mention it to me, Mary finds out from me. But if I had dementia she would be in the dark. It’s a big problem and one that some carers need to be more aware of. With couples, where one is the main carer for the other, that partner needs to be kept informed of any issues.

We are slightly unusual in terms of care. I am younger than many of the people the agency we use cares for. Perhaps if we were both much older things would be different, but I would assume even in that case the partner would want to be kept fully informed. I would also assume no one would enjoy having things moved to places they couldn’t find them.

Let me balance things now. The current carers we have are excellent. They fully include Mary and do not leave things in places where she can’t find them. They keep her informed and communicate well. That is why they are the carers we have stayed with; they are very good. There are previous carers we have had who have moved on to other companies who we keep in touch with. They were every bit as good and we miss them.

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Mary & I on a trip out

Author: Mike Nevin

I decided to write about the funny side of being cared for. I am a full time wheelchair user with daily carers. It's my experiences with my carers that inspired this blog.

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