Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was just to say happy New Year, but those words were rapidly followed by “So which day do the decorations have to be down by?”. He is only 7 years younger than me but at times the questions he asks makes him seem much younger. I had actually been sitting watching Eastenders when the phone rang, by the time I crossed the room to pick it up, it had shifted to answerphone, I still picked it up but I couldn’t see the number on the display screen because it had switched over. I was sure that I actually saw Teressa’s name on the screen before it vanished, so I found her number and called, she seemed a little surprised to here from me, especially as it wasn’t her that called. We spoke for a few minutes but as we had talked last week for a long chat, we wished each other a happy New Year and I returned to trying to work out who called. Our phone like almost all these days has a display, but I couldn’t get it to show what the last number was that called, I pressed all the different buttons but none gave me a number that I could be sure had been the last to phone here. Adam was in the kitchen washing some glasses, so I took it to him feeling silly as I was beaten by phone, another to add to my list of, I just can’t do. It took him less than a second to find out it was Jake and I left the kitchen as sheepish as I went in.

Tasks like that are so simple but when your brain won’t answer your questions, your eyesight fuzzes up what is there to be seen, and your fingers press a collection of buttons and not just one, what chance do you have? I hate to think what might happen if you dumped me in a lift or in front of a bank machine, I think others would quickly have enough of me and just shove me to the side. It really are those sort of everyday simple tasks that I learned long ago that it was best not to even try, the results are all clearer in my mind than the processes are. Joking a side though, it is those simple things that quickly pile in on us and make it clear you just wouldn’t be able to manage the world out there by yourself. Living isn’t just about being pain free, it is about being able to be independent in the wider world, I have often wondered where I would be now if it wasn’t for Adam, he long ago took over that side of my life, in the truest meaning of the world I haven’t been independent for years. If I was on my own, I would need so many helpers just to get through a normal week that it would be a nightmare with carers coming and with the best will in the world not doing what I really want doing in the way I want it done. It is all very well government going on about independent living, it just isn’t possible for everyone and it probably extremely dangerous for many.

I expect that most people see independence meaning the big things, but in reality independence is all the little things. The things that most people don’t even think about as they do them daily, how do you open a door when you can’t remember which way a key turns or you can’t even get the key in the lock. When you find yourself not knowing where a dirty plate should go as you know it isn’t the sink, but can’t remember buying the dishwasher. Independence means not having someone follow your every move, ready to jump up if you fall. It means not being left feeling as though you have become the stupidest person to ever live, because you can’t do today, what yesterday would have been simple and no matter how much help you have, you will never be independent again. I can’t exist for any length of time now without someone there to help me, be it with a phone, a door or a thought process. I’m luck as the person is someone I know and I love, and also knows me and loves me, I have the support I need and also accept that I need it. I really don’t see how any government can replace what I have, maybe they should stop calling it independent living and call it supported living instead, I don’t think it would sound so much like a threat and more like a gift.

3 thoughts on “Independent or Supported

  1. it is a horrible part of the disease to feel your independance taken like that isnt it I know that I am going through that more and more lately I hate that I have to depend and rely on Jen (the wife) more and more lately. HUGS

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  2. I have learned to let go of the big things, my husband now has to do a lot as I can no longer cook or clean. It is the silly little things that get frustrating and painful to ask for help with. Being defeated by a phone is a perfect example and I guess you understand that from what you have said. Independence I think is actually an individual problem, we all have our own level of acceptance and our own levels where we dig our heals in and just won’t let others help us with, until we have no choice. It can be hard to get past those points 🙂

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  3. Hi, once again your thought provoking post makes me stop and realise what life is like for you, and what things I take for granted. I’m glad you have the support you need (and want) rather than, as you say, a procession of carers that roll and out, not knowing you really. A neighbour of mine is much like yourself and has carers. The thing that strikes me is that his life is open to all who walk through the door. Nothing is sacred or private for him. Anyway, thanks for sharing your day. 🙂

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