Coming back to the world

Gently does it.

This is my first post for a long time and first public writing since losing my mother two months ago. I have written about my parents before, about their disabilities and about grief, but in the last few years I have learned a whole lot more about being an adult child of a frail elderly parent. There is plenty to share but as it’s very personal and still raw I need to do that carefully.

So here is a start. There is so much about the experience of elderly care that is invisible. For most of us, most days, residential and nursing homes are just buildings that we pass during the course of our busy lives. And care at home is the glimpse of a sign-written vehicle or a uniformed carer letting themselves into a home. None of us want to think about whether our relatives will need this type of care or even whether, in time, we will need it ourselves. It isn’t an attractive subject so it’s easily ignored.

Until it happens to us.

It’s a terribly painful situation to be in, to realise that your elderly parent, who may be frightened or confused, needs care beyond what you can provide. Especially if you have been their carer up to this point. It’s upsetting and there may be anxiety and guilt.

And there is the aloneness. It is easy to feel we are the only one experiencing difficulties with the system, exasperation with the care (which, by the way, is unlikely ever to be good enough in your eyes) and worry for your relative. This life is exhausting, because your work and family responsibilities will continue as usual. You will probably sacrifice ‘optional extras’ like leisure activities and a social life. You may also be going through the grief and loss of your parent becoming increasingly confused and more dependent on you. Let’s not underestimate this. It is all very hard.

It’s not fair.

The social care system is at best imperfect.

This is not like caring for a child – things are likely to get harder still.

Your friends and others who care, who have the best of motives, will tell you to look after yourself. This is good advice but most of the time it will be difficult or impossible to follow.

Do not add this to your list of things to feel guilty about.

Accept what help is offered if you can, but don’t feel guilty if you can’t.

Those of us dealing with elderly care situations will never ever feel that we have done enough. Most of the time we don’t know what is the best course of action or whether our decisions have been right. We make mistakes while trying to juggle all the elements of our lives. We get grumpy and unwell because we are tired and worried.

All this is normal. If I can find the courage and strength I will, in time, get to some of the stories, the difficult issues and perhaps even some of the lessons I’ve learned. But for today just this – know you are not alone in this.