reaching out?
A page in the diary "Sue's thoughts on life"
Written by suew Saturday, 13 March 2010 00:26
Here is something that has been bothering me for a while.
I am sure a lot of people who are looking after someone with dementia be it a parent, spouse or sibling are not getting any help at all. I wonder if it is the old stigma of mental health, “they will think we are all crazy”, if it is a problem of denial “if no-one knows then it isn’t happening” or if caring for someone in the family who has a dementing illness is thought to be a private matter and “no-one’s problem but ours”.
Whatever the reason some carers are doing all the hard work without the support they need. It is not easy supporting someone even in the early stages of dementia, whatever form it takes. And if you are someone reading here for the first time and think the person you are looking after had dementia then you would be better off with some help and support.
I was unaware of the attitude –‘ no-one’s problem but ours’ until recently. Our dementia support has carers and family members come in for the first hour to be given the basic steps of what dementia is and how to look after people with behavioural problems like those found in dementia. I was aware that a friend’s husband had dementia so invited her to come along. She said she didn’t think it would be a good idea and then said: “It’s really no-one’s problem but ours.” I must admit I didn’t really know what to say except for her to give me a call if she wants to talk about it.
We all know denial; most of us were there for a while. We knew “something” was happening to our loved one, we made some discreet enquiries or looked it up on the net, or asked a friend with a medical background. Then we sat and worried for a while, and finally we plucked up the courage to ask our GP and then asked for some investigations to be made until a final diagnosis confirmed what we already knew.
And will they think we are all crazy? Well I think you are crazy if you suspect that someone you love has dementia and are just sitting and worrying instead of getting the tests done and the consultation process started. Your GP should refer your loved one to a neurologist or a gerontologist or someone similar to start some investigations. There are medications that will help, not solve the problem but help.
We all say that we are isolated from our friends but I do wonder how we contribute to that ourselves by making a mystery of the illness that affects our care recipient? I know I have always told whoever asks what is going on. Why should I hide it? Ray has had strokes; Ray now has vascular dementia as well. I know some so-called friends will pull back and “not cope” but that is life, some people avoid you if you have a broken leg or a broken heart so dementia is just a “broken brain” to me. If people deprive themselves of our company it is their loss for sure.
This forum and a few others are here to provide support. We either avail ourselves of support or we don’t. If we don’t reach out then we are poorer for that and maybe less able to cope also because of isolation. And not having support leads to stress and stress leads to burnout. And who will look after your loved one if you burn out?
So you need to think about reaching out, asking for some help and what form that could take. If you come on here and chat we will listen to you and help if we can. We all understand, as we are carers together, not here to push you but here to support you. If you do come on board you can just read but then maybe make a diary entry or tell your story. If you tell your story we are not able to put a comment on it as we can if you make a diary entry.
I am here to tell you - you are not alone, you are just one of a mighty band of carers of dementia sufferers. We are like all the other carers for someone who had a need, a disease or an illness. We are all doing our best under unfortunate circumstances, with the little training we have.
Just please make sure you get the help you need. And maybe one day you will be glad you did.