A Big River in Egypt

Mostly we are coping ok these days, it’s a little humdrum and we don’t get out much but we are staying sane.  We are using our enforced time at home to do a major amount of tidying and sorting. Jobs that have been put off for years are finally getting done.

On a day to day basis many of our frustrations comes from x and y’s utter state of denial. 

We  have more than a bit of boy scout about us. We are the sort of people who will have a look at what might be coming and prepare ourselves. We carry first aid kits, stash a few spare tins of beans  and keep a box of candles where we can find them. We are happy to research and face up the facts of a situation; it’s how we are and it makes us happy. We accept that ignorance does not stop something uncomfortable from happening.

X and Y on the other hand have adopted the 'blissful' ignorance approach. Neither would face up to their medical conditions and plan or tell us what they wanted us to do or not do for them. 

X was diagnosed with vascular dementia a good few years ago. Apart from attending a few memory classes which he deemed pointless and silly the subject was never brought up. He did and still does think that there is nothing wrong with him. We have had no clues what he wanted long term, what kind of care he would prefer if he got too much for us.

Y was diagnosed with Parkinson’s and refused to read any of the literature, talk frankly with the PD nurse or discuss her future. We did our research, we knew what was likely to happen to her and wanted to make plans for this but were met with a wall of resistance.

The result is that it is now too late to put in a wet room, this would have made showering and personal care simplistic. Everything has been done in a last minute panic when the needs have arisen The kitchen was not adapted so she has to rely on someone else for the simplest of tasks. If she’d been able to keep doing something (even just a bit of washing up) it might have given her a little sense of independence and kept her mobile for a little longer. 

So we now deal with them in an environment less than ideal for someone in a wheelchair and have no idea what care they would like as their conditions worsen. We have no idea if she thinks tube feeding is an acceptable treatment in the future. She doesn’t understand what is happening to her and refuses to take any responsibility for her care and management. This no mans land is uncomfortable for us and often leads us into conflict.

They still refuse to accept their own vulnerability which makes arranging care for them impossible, we cannot force them into accepting help. We worry and they don’t think we need to. We find ourselves making decisions on her behalf in an information vacuum. We carry the responsibility of their current care and the knowledge that it won’t get any easier. 

Please don’t feel sorry for us, this is not what this blog is for...

I’m asking you to be really, really honest with yourselves. If you are going to take on the care of another adult no matter how much you love them now and how obliged you feel to care for them you need to be truthful about who you and they are. You may run into a conflicts that changes how you feel about them and alters your ability to care for them.