What to say?

I received a lovely message this morning from an old friend. My old university friend, Sian, who I don’t see enough of these days and with whom I have shared some wonderful, funny, embarrassing and special times with over the past 20 or so years (one moment in particular when we chased Brad from Neighbours down an alley in Hull! Shameful!) She is one of those friends who I know I will be friends with forever. We learnt to Salsa together, she introduced me to Les Miserables, I had my first all day drinking session with her, oh, and my mum has always adored her. (I was looking for a photo of her and found one of the night before my wedding where I am in my comfy clothes surrounded by my amazing friends, including Sian – and my mum is there with us. Drinking wine, eating pizza, happy and content in each others’ company. I love that photo. I love seeing my mum with my friends, enveloped in our sisterhood.)

In Sian’s message, she asked whether it was okay that she had shared my blog, as she has a couple of friends who are going through the same thing and that, most of the time when she asks them how things are, they change the subject. She told me she had shared my blog, hoping it would offer them some comfort – and it seems it has. I am not sure how much comfort, it may only be a negligible amount, but however tiny that amount, it is better than no comfort at all.

Her message has resonated with me all morning. I know that feeling well, when people, very kindly and with the best of intentions ask how things are. The majority of the time you shrug it off, or change the subject, or roll your eyes and half-smile, showing them it is actually pretty bad, but that it’s not the right time to talk about it. Many, like my wonderful friend Sian, must find it hard to know what to do for the best. I know my hubby is the same, and actually most of the time, he waits for me to raise the subject and will happily and sometimes quite forcefully offer his opinion on what is best or what we should be doing to help my dad, or what needs to happen. In fact, he and my brother are similar in that way – perhaps it is a man thing. They want to take action, have a plan, make it right. Whereas, sometimes there is nothing to be done, there is only talking or listening or crying.

But, he can’t do right for wrong my poor hubby and he knows it! I started this blog just a few weeks ago and didn’t tell him about it. I don’t know why really, I think I just didn’t want to be put off or I didn’t want anyone else’s opinion. I felt I needed to do it for me, as an outlet for my thoughts and fears and grief. An outlet for my dad to be able to express his pain, whilst hidden from view. An outlet for us to share the bloody craziness of it all – the awful, sudden change that has pounced on us, shaking our foundations and putting into disarray all we had previously taken for granted. Changing the hierarchy in our family, adding responsibilities to some and taking away from others. Eroding memories that were still to be made and making more precious those memories that until this point, weren’t special at all. When things were ‘normal’ and Mum was infuriating because of her perfectionism or her overly loud, raucous laugh, not because of her misfiring neurons and aggressive delusions. When life was about making plans and looking forward to the future, not trying to block out what the future might now hold.

So, I didn’t tell him. Not because I thought he would think I shouldn’t do it, but because he is more practical than me. He is certainly more ambitious than me and I thought he would maybe advise me to do it differently, or better, or with more thought for where I wanted it to go. And, of course, he saw it and read it and loved it and is very supportive, in his quiet way. “You don’t mention my blog very often,” I have thrown at him before. “Have you read it?” Of course he has read it, and his response – telling me that he didn’t think I wanted to talk to him about it as I hadn’t even told him I was doing it -struck a chord.

It must be so hard for those around us to know what to say or to know how to act. Some days I am ready and (sometimes overly) willing to rant or rave or reminisce about my mum. Sometimes I want to be asked, as I need to get something off my chest and talking about it, or putting into words those emotions can sometimes disarm those feelings, it can reduce their impact on your day. The talking can swing the power back on to a more level playing field. That power struggle between your grief and the necessity to carry on as normal. Sometimes the grief wins, no contest. But, sometimes the old British upper lip wins out and we carry on as before. As I say to my kids “Don’t panic Mainwaring!” (which they happily repeat, unsure of its meaning or its provenance), in other words, as you were soldier. Carry on.

So, my dearest Sian, I will take the liberty to answer on your friends’ behalves; they are not doing great, but they are working their way through it. They take each day as it comes – some days they pretend it’s not happening and other days it will just engulf them like a heavy darkness. They will sometimes want to talk about it – but be prepared with lots of tissues, wine, chocolate and crisps – and other times they will not want to burden you as they will be well aware that you have your own life, your own concerns and issues, your own troubles to deal with. Many times they will change the subject because it is just too painful to go through at that particular moment, other times they will change the subject because they can see you are not really prepared for the honest truth and they want to save you the heartache of entering their world. Sometimes, it is self preservation, sometimes it is a way of protecting you. As a good friend, all you can do is keep asking and be prepared to either move on to a different topic of conversation, or have some tissues and a strong shoulder ready. There is no real rhyme nor reason for which response you will get, it is as much as shock to you as it is to those living through the exhausting battle of dementia when the explosions of grief occur. They will appear at the most inopportune moments and maybe a lot of the time, the change of subject is simply to bat away these eruptions of violent grief. Sometimes, that is the only way to get through.

I have been genuinely touched and overwhelmed by the messages I have received, the messages of love and hope, or of best wishes for my family, for my dad. Lovely memories of my mum, things I had not heard before and things that make me smile and cry at the same time, as it makes me yearn for more. I want to know my mum better, I want her, the real her to stay alive in my memory for as long as possible and I think the more memories, the better. They can only help can’t they? They can only add to the “Mum” box in my brain I am filling with every tiny detail I can remember, desperate to keep the lid on them, not letting any of them fall out or spill over the top, cramming as many in as possible, as they’ve got to last me a long time these memories. They have to last me forever and I have to use them to keep her alive for my children and then my children’s children. So, thank you for all your messages and memories, it was not the aim of my blog – that was to try and help others if I can, even a tiny bit through this bloody terrible bastard illness – but it is a beautiful result of it and believe me, it does help. So, even if I don’t show it, even if your friends Sian, seem like they don’t want to talk about it – when they change the subject, or when I appear not to have noticed kind words or caring glances, please be assured, that I have – that they have, and it helps. It really does.