A willing carer?
Mopping floors this morning and trying to divert my mind I found myself thinking about this new role of mine. It's a role I would never have volunteered for, never have thought I'd be any good at and never have imagined myself to have the patience for but here I am and here I'll stay for as long as it takes.
But why? some people will ask and I've thought about this too. About the difference between 'willingly' and 'selflessly' and which applies to me; about whether I'm selfish as some people might think when my life doesn't revolve entirely around Ash and how balancing it all makes life better for us both.
So first of all, do I do it 'willingly'? Yes, absolutely. Never for a moment have I thought of giving up or leaving Ash to it not even in the early days when he could still look after himself. We're in this together and I'll do the best I can while I can.
Do I do it 'selflessly'? Absolutely not. I had to look the word up just to make sure I'd understood what I was asking myself and, just in case you didn't know, 'selflessly' means 'in a way that is concerned more with the needs and wishes of others than with one's own'. That's not me and I think if it was I wouldn't cope with any of this. I do put Ash first because that helps make life easer for both of us but I also have a need to find ways in which I can make life just that little bit better for me and I do that because if I'm feeling good then, again, life is easier for both of us.
The next question I asked myself is 'if I'm not doing this selflessly does that mean I'm being selfish?' Here I would say 'absolutely not' because all the things I arrange for me are arranged around Ash's needs. And now we come to the things I have to consider when I make those arrangements.
I would never leave Ash on his own for a whole day but that doesn't mean I can't have a whole day out, I just need to find a carer. So I look for a carer but it has to be the right one because I couldn't leave him with just anyone and, as we've discovered, he's very choosy.
I can stay away overnight but the carer has to be someone who he's very, very comfortable with, who doesn't mind staying out in the countryside without streetlights and who can cope with an aging dog and an open fire.
I can stay away for several nights but the carer has to be someone with no ties who can give those days up because Ash would be confused by a mix of people.
I can have a morning out but only if he's having a good day. This morning a friend came down to me because Ash was struggling and I didn't want to leave him.
Those then are the ways I can have time out of the house but what of the other ways I can 'escape' from being a carer?
I have my treadmill and travel the world while listening to podcasts to keep my brain active; I have the table and chairs up in my bedroom where I can sit in silence or listen to the radio; I have my laptop and cordless, noise cancelling headphones so when I finally can't take any more of the quiz shows I can watch something of my choice without disrupting Ash; I have my Sunday afternoon pamper sessions; I have my friends without whom none of this would be possible and I have Jake and the eight year old who take my mind off it all.
Someone asked on the blog a few days ago what treats Ash had to look forward to and just in case anyone else is wondering I'll tell you that Ash's idea of a treat nowadays is a walk with Max and his camera; a warm cheese scone (available to him every day of the week because I've learnt to make them); a cup of tea at one of around six local cafes where he feels comfortable and a chat with one of the many friends he sees on his walks around the village. Anything else makes him anxious so, if something comes up that I think he'll like, I cannot present it as 'something to look forward to', instead I arrange it to look accidental and then watch to see if I think he's happy. If he isn't then we leave, it's as simple as that.
So that's the difference between willingly, selflessly and selfishly and I like to think I have it fairly well balanced. At least I can say quite confidently that we're still both in one piece.
I really don’t think my partner now ‘looks forward’ to anything. I just don’t think his brain works in that way. Although we can still go on holidays I cannot get him to show any interest in them until we actually get there and then we just have to keep it simple and take each day as it comes. I think that when living alongside dementia you can only do the best you can each day - and you certainly can’t do that without somehow managing to make time for yourself to recharge your batteries. I find it so useful to hear from you and others on your blog about how you all do manage to juggle that time - and I don’t think any of us should ever feel we are selfish in doing so. Xx