Years ago, when my siblings and I were teenagers, my mother sought to shield my father from our whining and complaints at the end of the day (or perhaps it was just from my whining and complaints…!) I think she felt he had a right to a bit of peace when he came home, at least until after dinner. I remember on occasions, home from school, presenting her with some problem, some upset from my day and she would listen. But if we were talking about it and his key was heard in the door, she would raise a finger to her lips and say, "Is everybody happy, then let everybody sing..."
This was my cue to shut up and present a happy smiling face and at least wait until after dinner to approach him, if ever. It was her way of protecting him, of setting the mood for a pleasant evening and I suppose, of making sure that he looked forward to coming home. He did like us all to be happy. But the reality was that we weren't always happy and it did sometimes make me feel like my feelings weren't so important.
I’ve been thinking about that recently. I’ve been thinking about how carers who are also spouses/partners/children sometimes have to put on the happy face to lift the mood of their loved one who is living with MND. It can feel difficult, it can feel like too much - a burden in itself, and it can make us feel like our feelings have to be hidden.
Don't you find, as a carer, that your mood sets the tone for the day? I remember one MND carer who told me how she made it her business to make her husband laugh before the first loo visit in the morning. I thought that was wonderful. I've probably mentioned it before. Her husband is dead now and I bet she's really glad that she was able to do that for him. That's real caring. I'm lucky if I can crack a smile myself before the first loo visit in the morning, never mind make Roch laugh. Here's the thing. If I'm feeling down, he feels down. The gloomier I get, the more he feels like a burden. I feel like I have no choice, I have to raise my game and set the mood. Sometimes it requires little or no effort, but sometimes it's a real struggle. I mean, carers have feelings too - right? Our feelings are important and we must be allowed to feel bad sometimes. But it's not too much to say that the carer has to maintain a certain level of positivity and cheeriness (as my mother felt she had to do, for her own reasons) in order to prove to their charge that they are not a burden.
So I’ve realised that my mood is key. When I manage to get organised, make a joke, be cheery and positive, get us out for a trip somewhere - of course he feels better. It helps him to feel that life is still worth living. I do manage to do that, by the way - but it's definitely getting harder. Sure, I can talk to him about how I’m feeling, but it isn’t going to help him much to know I feel like shit. That’s hardly going to lift the mood for the day now, is it?
It hasn't been such a problem before so what has changed? Well, here's the thing. We've talked about this, he and I. It's been four years now and I guess it’s getting me down. I don't want to jump the gun but it looks like we're in for the long haul (in MND terms, that is). More and more it looks like this is going to be our life together, perhaps for years to come.
He's getting worse, but slowly and yes, that's a good thing. But if we're in it for the long haul, I need to find a way to live this life without sinking into depression. Sorry but I've got to be honest about this. For his sake and for mine, I need to find a way to be happier in our life together, living with MND. We both deserve to be as happy as we can be in the circumstances. I have to find the strength from somewhere to carry us along, to have the emotional energy not just to look after him, but to make our life together worth living, for both of us. So what can I do to make myself feel better? There are times when I ask myself if I should perhaps be on anti-depressants? I know many carers are and it can be the answer. Maybe, before the end, I'll have to be on anti –depressants but it seems early days to me. I don't want to go down that road just yet. So I have asked myself some questions.
I started out by asking this one:
Q. What makes me feel good?
A. Lots of things - a good book, the smell of freshly cut grass, a walk through Autumn leaves, crisp white sheets, being out in the fresh air, Strictly Come Dancing, a good box set, a twix bar with a cup of tea...Yes, yes, okay. Stop now, that's all very well - so those are things I enjoy, but they are quick fixes and they don't last long (especially the twix bar and the cup of tea).
So, I asked myself another question:
Q. What might help me in the longer term?
A. Meditation – well, I’ve tried it, I’m pretty hopeless but I can try again. Counselling. Yes, I do still go to my Counsellor (probably not often enough). Support from other sources, like the local MND group or the MND Carers group. Yes, although it’s not always possible to make the meetings and although it’s always worth going, and helps at the time, it doesn’t see me through in between.
So then a better question occurred to me, and here’s where I think I’ve made a breakthrough:
Q. What makes me feel good about myself?
Want to know the last time I wrote anything or even tried to write anything? Well, I can't tell you because I don't remember and that makes me feel like shit.
Yesterday, I read an interesting blog post by a writer/blogger, who argues persuasively that being sad blocks creativity. Yes, he says, many successful writers have created from their own sad place in the world but, he says, sadness also blocks creativity. When we are sad or depressed, we start things, but we don't finish them, when we are low we don't have sufficient belief in ourselves to see the creative process through. I think he's right. In fact, I know he is.
I've said before that my default position is sadness. Well, that's not going to change, but I can take steps to help myself to raise my mood. I feel sad (bleats "...my husband has MND and life is so shit...") and so I don't write. I don't write so I still feel sad but now I feel bad about myself, and that makes me feel worse. So - I have made some new rules:
1. Get up earlier on my days off.
2. Back to my 'morning pages' and keeping a journal.
3. Write for an hour on every day off.
4. Write for half an hour on work days.
I hope that I will be a happier carer - a happier person if I can do some writing. Maybe I'll discover that I need anti-depressants anyway. Maybe I'll find that I need them to get myself out of bed in the mornings to do some writing. If I do, I'll let you know. I hope that by doing this thing for myself, it will make a difference to the quality of our life together. I need to remind myself that being a carer is only a part of who I am.All you MND carers out there - how do you do it? How do you stay positive for your MND partner?Do you feel it's up to you to set the mood for the day? Really, I'd love to know.
Q. What makes you feel good about yourself?