Advice, or something like it….

I remember my granny having Alzheimer’s in her late seventies and eighties and in its later stages she would confuse me with one of my cousins. I didn’t mind – my cousin was older than me, very gorgeous and in my mind very exotic as she lived far away in Canada. I had two beautiful Canadian cousins – one looked like a prettier version of Karen Carpenter and the other one looked like a blonde Belinda Carlisle. Their school photos adorned my granny’s wall and I would stare at these pictures imagining being as mysteriously beautiful as these two sophisticated teenagers. I remember correcting her; (feeling secretly chuffed) telling her “No, Gran, I’m Sarah. Hazel isn’t here just now,” and that would be fine. She’d smile and the prompt would then make her recognize me. “Oh, yes, Sarah – how lovely to see you.”

This was my earliest experience of dementia.

One of the first times I witnessed my mum not recognizing my dad will haunt me forever. It had happened so quickly, her decline that I just wasn’t ready for it. None of us were.

Dad had mentioned it happening on the phone a few times and I’d had conversations with my mum where she’d ask me if I’d seen my dad, who I could clearly hear was in the room with her. But, seeing it for the first time; being in that surreal moment was truly devastating.

I thought I could rationalise with her. I thought I could explain that it was her mind that was confusing her and that this was why she’d been seeing the doctors. I thought I could show her photographs and that simple logic would overcome and she’d turn to me and say, “of course, you’re right. I’m being silly!” and we’d laugh about her being a bit muddled, just like I’d done with my granny years earlier.

I tried all these things: I joked with her, I got cross with her, I became frustrated, I tried ignoring it…..nothing worked. She was adamant that the man there with her was not her Stephen and he certainly was not my father, whatever he may tell me.

I remember that was the first night I went to bed and sobbed like they do in the movies: An involuntary noisy, snotty, guttural wail that wrenches your body in deep and painful waves of emotion. I have cried a few times like that since, but never before then. Before then, my world was a safe and steady place; but in that moment I knew my life was changing forever and the future I had envisioned before me for myself and all my family had been shattered; splintered into tiny shards of uncertainty, pain and loss by the devastating force of dementia.

Fifteen months on from that incident and I am more used to it now, but, it is still difficult, I mean, what on earth do I say when she asks where Stephen is? What do I tell her when she gets upset because she thinks he’s left her, or has run off with other women? What the hell do I say when she gets angry and cross at the Stephen who is there with her, because he has taken her car without asking? My instinct is to defend him, this poor man who is trying to shoulder so much of this on his own, who would never leave her and even now is not ready to consider full time care for her, feeling that it is his job to look after her despite all the challenges that brings. I want to shout at her that he has taken the car because it is his bloody car! I want to tell her to stop being so mean (because she is, all the time), I want to tell her that if she’d just listen to me, or open her eyes she’d see her husband there – he’s standing right in front of her!

I don’t say these things. I did. I have done. They don’t work.

All the advice that I have read (and I have read a lot) tells you to redirect, distract, agree and then move on to another topic of conservation and I am sure that when you work with people who have dementia and you can distance yourself from it, this is perhaps the best advice. But, when it is your mother – when you are emotionally entrenched in this living hell – it is almost impossible.

She still looks like my mum (albeit smaller and frailer and less well-kempt), she still wears my mother’s clothes (albeit the wrong way round, or upside down, or inside out) and so when I look at her, I am flooded with memories of what she was, who she was, what we did together, what she could do, what she sounded like, what she would laugh at, what she would be upset about, what she would enjoy doing. Despite my logical self knowing that that woman is gone, there is a part of me that still hopes for a glimpse of her, a flicker of the mother I used to know. Perhaps that is the way I cope with it, perhaps that is a safety mechanism for me. I don’t know. So, I sometimes still get cross, or frustrated, or tell her she’s wrong. I can’t help it. I want my mum back.

Mum now no longer knows any of us, I catch her looking at me sometimes and I can see a vague look of recognition, but there is also confusion too. She attempts to disguise her confusion though with saying the things she thinks we expect her to, asking the things she thinks she should ask. When I pluck up the courage to ask her if she knows who I am, her answer now is always, no.

I can cope with that though. What is more difficult is her not recognizing my dad and her constant agitation with him, her huge disappointment that she has been left with him, her constant desire to “go home” because she simply cannot stand being at “this place” with “that man!”

I cannot convince her that it is him, her husband of 44 years. The only thing I can do is try and help him; to be there for him as much as I can; to make him nice home-cooked meals for the freezer so he has one less thing to worry about; to support him with a daily phone call, trying to reassure him that he is not on his own; that we are in it together, as a family. Other than that, I try and block it out as when it does seep in, the pain is truly debilitating. Not just the pain of losing my mother, grieving for her when she is still with us, but the agonising pain of knowing what my dad is going through each and every moment of every day. What he has lost – his future, the love of his life, the happy retirement they had planned, the holidays they were going to go on, the places they would visit, the grandchildren they would enjoy together – all gone. His future changed beyond imagination. That is what upsets me most now.

I can’t do anything to help my mum. Not really. I can help her get a shower and get dressed. I can help her with her lunch and make sure she is comfortable, but I cannot make her better. She is a stranger to me, as I am to her.

The past 18 months have been hard, but I know more now than I did – I have learnt a lot about this disease and about myself. So, if I could give advice to myself when I was starting out on this dementia journey, I would say:

• Let the tears flow. They will come when you least expect them and sometimes they will be noisy and ugly, other times they will be silent and immensely private. They are draining and they are exhausting but they help, in that moment anyway, in how you feel right at that dreadful low point. The tears can be a release, don’t fight them.
• Get on with it. Allow yourself time to think about how awful it all is and grieve for what you have lost. The rest of the time, get on with your life – you do not want dementia to rob you of your life too – and be practical: What can you do to help your dad? Can you get involved in a dementia charity? (Yes I can – I am now a volunteer at a local dementia singing group and despite it being an emotional experience for me each week, I at least feel like I am trying to DO SOMETHING to help people with this awful disease). Can you raise funds for charity by running a marathon or hosting a tea party? (Yes – I am running the Great North Run in a few weeks and raising money for Alzheimer’s UK). Can you help others? Can you make a difference? (I have started a blog to try and raise awareness and share my story http://www.mycrazymum.com)
• Remember the good times. It’s hard this one and sometimes you will not be ready for the emotional rollercoaster of the ride, but it is important to remember how lucky you are, how lucky you have all been in life. Revel in your happy childhood, realise how fortunate you have been.
• Talk. Talk to whoever will listen. Sometimes it will be your family and close friends, other times it will be simple acquaintances who find themselves at the end of your long and emotional release of fear, pain, anger, and loss. They might look surprised, they may run a mile, but go for it anyway, if it is what you need in that moment, then don’t fight it.
• Don’t talk. Sometimes you will not want to talk about it and friends will ask, with good intentions but you will not want to open that door at that particular moment. Don’t be ashamed or frightened to simply say nothing about it, or to dodge the questions. You will know when you need to talk and when you need to block it out. Listen to yourself.
• Enjoy the surprises. This journey will open up opportunities and show you different sides of people, sometimes those you think you know best. Enjoy being closer to your dad than you have ever been. Enjoy being emotional with him – it will be unusual for you at first, but it will make you appreciate each other more. Follow the unexpected pathways that open up and quietly thank your mum for them.

I don’t know what the future holds; the past 18 months have been so surprising and so devastating that I take some comfort in the fact that we will no longer be caught off guard. We will no longer be resting on our laurels and expecting the best of what life can throw our way. No, we are ready and united as a family to tackle whatever hell is thrown at us next. It cannot possibly be more shocking and more upsetting than what we have been through already.

That is what I am telling myself anyway.