Never Say Never

I did say ‘never’. More than once. Actually I said it repeatedly for about 20 years. That’s a long time to say ‘never’ but I was sure of myself. I was sure that I never wanted to do this again. I’d been, got burnt several times, and wasn’t going to go there ever again.

About six months ago I had my first inkling that perhaps I had said ‘never’ with a little too much certainty. But I had never pictured myself in this situation, ever. While I was still saying ‘never’, I was starting to realise that I might have to change my mind sometime in the future.

I can tell you that I hate that! Having been adamant for so long, having been sure that this would never happen, and now because of a number of decisions I had made over recent years, I knew that I should never have said ‘never’. Never say never, Cate!

I have shared in past posts that my mother has Alzheimer’s Disease. It’s a cruel disease. Everyone says that but I had little idea just how cruel it was. I had seen my grandmother’s journey through Alzheimer’s. An uncle’s journey more recently. And one thing that’s sure is that I’m nowhere near the end of this Alzheimer’s journey yet. I know now that contrary to past thinking, it’s a much worse experience for my mother than it will ever be for me.

I remember being told “at least they don’t know what is happening to them”. That was a somewhat comforting thought. Just yesterday someone told me “they’re really already dead” (ouch!). But research has now found that patients do know. It’s just they don’t know what they can do about it. It’s a good reminder to me that no matter how hard this is for me, it is much worse for my mother. That’s enough for me to never say ‘never’.

For all of her life, my mother has gone to church. It has been central to her life as a child and as an adult. She was married to a minister. Now it continues to be a key aspect of her life, although she is more limited in the extent of her church activities. Apart from perhaps when she has been in hospital (rarely) I can’t think of a time when she didn’t go to church on Sunday.

When mum had to give up her driver’s licence and so couldn’t get herself to church, we set up a system where another brother (who went to the same church) would pick her up and take her to church. I would be waiting outside church at the end of the service to take mum home. Many times I have been invited to go to church with her, but I was saying ‘never’… quite firmly. I had absolutely no intention of going. But the system we had set up worked.

For a big chunk of my life, I had gone to church. I had grown up in a minister’s family so church was central to our family activities. As an adult, I had continued to go to church.

Several things happened in my teens and twenties. They dulled my enthusiasm, although I never said anything and I kept up my participation. When I was first diagnosed with a mental illness, in my late 20’s, a number of statements made to me by a few unwise people, left me concluding that church was no longer the place for me. I felt judged, and I felt uncared for. To the extreme perhaps, people who had hurt and abused me were somewhat more important to some church people than I was. My needs for safety and protection were seemingly unimportant. My experience was that church was not the compassionate and accepting place they said it was.

And so I stopped going to church… about 20 years ago.

Until now.

My thinking has driven me further away from the church. But just sometimes, it’s necessary to put that aside. My mother now needs someone to be with her when she goes to church, otherwise she probably wouldn’t be able to go for much longer.

I made a choice. I would go to church with her until the point where she can no longer go (with me).

Aside from my own beliefs and thoughts, I’m not ready to see mum unable to go to church. It is very important to her, even with her disease. For some reason that I don’t fully understand yet, I’m prepared to help her keep it in her life.

Ok, so I have only been once so far. There is little that has changed in 20 years, except some of the music. It wasn’t somewhere I felt comfortable, but my comfort was not what this exercise was about. I don’t call myself a Christian, and suspect that will continue. I didn’t agree with everything that was said. It is a middle-class church and I wondered where the inclusion of others was.

But I will be there, with her, again this Sunday. And the Sunday after. And for as long as Mum can make it.

This is about being there for my mother. Making sure that something so important to her remains in her life, and setting aside my own thinking, I hope, for her sake,  that we can keep doing this. You see, when we can’t keep going, a very large chunk of mum’s life will have been taken away by Alzheimer’s. And that will be tragic.

It’s going to be a hard road for me. But I am willing to do it, not because I love her but simply because I hate to see this disease swallow up someone’s life before it has to.

Thanks for reading

 

Cate

“looking at my reflection, in the window opposite, hollow and translucent, I see a woman disappearing. It would help if I looked like that in real life – if the more the disease advanced, the more ‘see-through’ I became until, eventually, I would be just a wisp of a ghost. How much more convenient it would be, how much easier for everyone, including me, if my body just melted away along with my mind. Then we’d all know where we were, literally and metaphysically.”

― Rowan Coleman, The Day We Met

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7 thoughts on “Never Say Never

  1. Sometimes there is no other way but to be there for others regardless of ourselves, just as there is the fact that if you live alone ain’t nobody going to wash the dishes or clean the bathroom, but you!

    So… is it love? Is it the fact the job needs to be done and ain’t nobody else going to do it? Does it matter? The thing that matters is that you know you want to do this, or need to do htis, even though it fills you with as much enthusiasm as cleaning a toilet? 😀

    I do understand. I never was in a church-going family, but I lived in a very conservative Christian country in my teens and early adulthood where my lack of church-going made me a freak. So every now and then I’d go with friends and feel utterly wrong. I trust my heart to be my connection to God, so if it feels WRONG = it’s wrong for me. BUT it might be right for the hearts sitting next to me. I have no problem with that. Sadly… too many people did have a problem. I’ve had far too many people try to “convert” me thinking I was lost when in actual fact I was always exactly who I was meant to be.

    You respond to your mother because you know this is her heart – where she is meant to be. And in that understanding you are taking her to where her heart belongs, because you would hope for that same understanding and respect for your own heart truths.

    And that is more than love, it is Agape. 😉

    1. Thanks MC. To be honest I’m not sure what it is, and I’m not sure I even want to work it out. I’ll stick to your cleaning the toilet analogy. 🙂 Beyond that, it just has to be done.

  2. I remember doing the same thing for my Grandmother years ago. Now that she’s gone I’m really glad I did it. It didn’t convert me but made me realize that you don’t have to be a Christian to have compassion.

    1. That’s a really good point JC, and too many people think that compassion is the domain of Christians. Actually I also think that for me, and bearing in mind the relationship I have had with my mother, that it is more an act of compassion rather than love. I guess it might be different for different people.

  3. Pingback: Me And Mum – Infinite Sadness… or hope?

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