Recently I was listening to a woman talking about the issues she was having looking after her husband who has some form of dementia, obviously looking after someone with this illness is difficult at the best of times. I was listening to her sharing her frustration about her lack of sleep, the fact that her husband keeps waking her up during the night as he keeps getting lost. The following day she ends up tired out, amongst other things she was sharing. She felt alone, abandoned, at her wits end, frustrated, angry, and most importantly trapped. I am certain her husband feels many of those things too, angry, frustrated, alone, confused and above all trapped. They are both trapped for different reasons, one for being ill and the other for being in the role of carer.
The thing that came into sharp focus for me is the thing that upsets them both the most, the one they both share is their loss of independence.
Independence to me is the ability to do anything without restrictions from others or circumstances. Well this begs a questions. What does independence mean to us? and do we value independence?
Sometime in the first year of my life it was discovered that my life would be different from that of others, my parents discovered I was blind. This meant some changes which would impact my life for good. My parents I’m sure wondered how I would get on in the big wide world, what adjustments would need to be made in order for me to live my life as independent as possible yes as independent as possible.
From the day we are born we are learning and are encouraged to become independent, to gradually learn to navigate our own way in the world, everything from feeding, clothing ourselves, to move around on our own, making important decisions about our future etc. We are forever progressing towards independence. But how many of us ever considered that there is a strong possibility that once we gain independence that we can lose it in an instant or gradually and how we would cope if that was lost, how many of us have really faced that possibility.
I’ve been in the position that although I have some form of independence, it is hindered. I can’t drive so I have to rely on a good transport system and have to plan my journeys more than most, accounting for time allowance, busy periods, cost, engineering works if it’s a train journey. I can’t go abroad on my own unless it’s to see my relatives, or an expensive travel service, other groups aren’t disability friendly the mobility problems are magnified if I tried to go on my own. In other words I do have to rely on others, services etc to be truly independent.
Anyway I don’t want to make it sound like my life is terrible it isn’t. The point is I VALUE the independence and freedom that I have, and I know some people have it worse.
I think that so many people don’t consider what it would mean to lose their independence, they take it for granted, and some particularly dare I say our Government see no problem in removing anything or anyone that helps people who are sick or disabled to live their lives independently.
When people lose their independence I find most people can’t handle it and few really come to terms with it. They’ve never thought it would happen to them or refused to face the fact it could happen to them.
When my lovely nan was unable to walk into town anymore, she had to rely on my aunt to get her shopping for her and would soon get upset if my aunt got her the wrong things, she couldn’t do her own shopping anymore, she didn’t have the freedom of choice she used to have and her frustration and resentment of not being independent would boil over.
For those who are independent now think about what you are free to do now on your own without having to rely on anyone else, think about what you would do if you lost it. Finally don’t take your independence for granted you don’t know how long you’ve got it for.
This is looking to become a 4 part series. The next blog entry will be addressing the irony of independence.