I saw this quote the other day and it stopped me in my tracks with its raw and painful truth. She did teach me so much my beautiful mum and she is still teaching us – teaching us about the darker side of life; the pain and the hurt, the loss and the fear, but she is also teaching us to be strong and to never assume, to enjoy each other more, to value the good things more, to love each other more, to live better, to be better.
Mum has had a very bad few days – Dad rated Saturday a 3.5 out of 10 – I think last night and this morning might be down to a 1 or a 2. She is agitated and unsettled and it is very difficult to make any sense of what she is saying. The words are all jumbled, her subject matter seems to jump around from one obscure, strange thing to another, the only common thread seeming to be that none of what I can catch on the phone is true. “He’s going off to Canada,” and “this is my house, he says its his house. It’s my house!” being common phrases this morning. I really don’t know how my dad keeps going some days. It is truly terrible what he is having to live through, day in, day out, each hour bringing with it a new challenge or throwing him a completely new and hard curve ball he brightly and positively expects himself to catch. I keep expecting him to drop the ball every now and then, but so far, he has coped – juggling countless hot-potato balls whilst at the same time trying to catch a number of eggs that are constantly being aimed at his head, oh…. while standing on one leg. That’s how I see his daily struggle and his efforts and his uncomplaining goodness just leave me in awe.
My amazing dad.
My brother text me last night after speaking to The Crazy for about 20 minutes. None of what she said made any sense he said, and he had no idea if Dad was in the house or not. Even when we have the courage to ask, more often than not her answer is unintelligible. None of the words make sense, not put together in a sentence anyway. It really is like trying to understand a foreign language – one you may have studied at GCSE, so you know a few of the words and a few of the phrases (“Ich bin dreizehn jahre alt” – I was thirteen the last time I did German!) but when you hear a native speaking it, you get completely lost trying to keep up. Every so often you hear a word you know and your brain automatically makes sense of the conversation and you fool yourself into thinking you are following the conversation well, that you are keeping up admirably. Only to realise, as you are handed a coffee and a bun, instead of a 3-course Michelin starred meal how completely off the mark you were. That is how my conversations now go with my mum. I have to try and guess what she is telling me, I have to try and keep up, and most of the time I get it wrong, or it is so confusing that there is simply no way I could make sense of it anyway.
My granny had Alzheimers, my mum’s mum, but she was well into her 70’s by the time it had taken hold of her and into her 80’s before she needed full time care. My parents adapted our house when I was a teenager, making room for her to come and live with us, but soon after I think they realised it wasn’t going to be possible, she needed too much help – more than we were able to give. I remember my mum was so wonderful with her – oh, she lost her patience at times and would get frustrated with Granny , but she always did her best for her and tried really hard to do her daughterly duty. “If I ever get like that, just shoot me,” she used to say. “Stash some pills, crush them and put them in my dinner,” she said more than once. We would laugh and tell her not to worry, we would be quick to help her on her way out. Oh, the arrogance of youth!
I know my mother would be utterly ashamed and devastated by the strain her illness is putting on our family. She would be horrified by her behaviour, her actions, her meanness to those she loves. A part of me is so glad she does not know, I don’t think she would cope with that knowledge at all. She would have done anything for us, my mum, and so I know that if she could, she would have done her utmost to not get to this point now and I know, as the illness was in its early stages, she battled bloody hard, keeping it at bay for a lot longer than any of us realised. But, we are at this point, where that is I am not entirely sure. I know it is somewhere very far away from where our normal used to be, but I think not yet close to the end point, with a lot of challenges, hurdles and stinking, festering pits of shit and doom to get around, get over and wade through. It is a place of uncertainty and fear, of constantly changing parameters and moving goalposts. Oh Mother, if you only knew, you would be so very sad by it all.
So, we cannot crush up some pills and send my mum off to whatever afterlife she does or doesn’t believe in…for one, it’s illegal and two, she’s still Mum, on some level anyway. She looks like Mum and wears her clothes (albeit, sometimes back to front or upside down or in the wrong order), she still has some of Mum’s old habits – like constantly tidying the kitchen and wiping down the kitchen surfaces, even when there is nothing on them or always wearing a lovely scarf around her now constantly cold neck – so it is sometimes easy to forget that it is in fact a stranger in her body. A rude, aggressive, unhappy stranger who does not want to be with us, who wants to be anywhere it would seem but in the happy home she has shared with my dad for many years. I think we all strive to see or hear her, the real her, if only for a fleeting moment, and those moments are becoming fewer and more infrequent as the weeks pass and this bastard disease grips hold of her ever tighter.
So, yes Mother, you taught me so much about life, about love, about the importance of family and what success really is. You taught me to value myself and aim high. You taught me that I was equal to the boys (and in some cases the teachers) at school and could do anything I wanted with my life. You taught me to make soup and a white sauce, which kept me vaguely healthy at university. You taught me to be tough and to fight for what I believed in. You taught me to be modest and graceful in victory, but to be competitive and to never give up. You taught me to be thoughtful and respectful of others and to care. You also taught me how to win an argument and how to dig my heels in over something I feel strongly about. You taught me to put my children first and to be fierce in my protection of them and to be ambitious for their futures. But, nowhere in your teachings did I ever learn how to get on without you. I remember occasionally having dreams as I was growing up about family members dying, or my pet rabbit starving to death as I sometimes forgot to feed him (he didn’t by the way, lived to a ripe old age of 11 despite testicular cancer!) and I would wake up bereft. The grief absolutely overwhelming, the tears soaked into my pillow, gasping for breath. I remember on the days after dreams like that, the sadness would stay with me for all of the next day and I would have trouble shaking the feeling that I had lost something so very valuable. It was an insight into the future, I see that now. It was a taste of what was to come, of the debilitating sadness and feeling of abandonment. The sense that you have been washed out to sea, on a tiny rowing boat without oars all alone and you are expected now to crack on and somehow find your way back to shore.
But, if she had have taught me to live without her, wouldn’t that sadness, of knowing what was inevitable have lived with me constantly? Wouldn’t her other teachings have been diluted by my fear – lessening their value and their impact up on my life. Wouldn’t I be a very different person now?
You taught me so much my darling mum, and no, you never taught me to live without you, and for that, I thank you.
I know your mom doesn’t have Alzheimer’s – but I read about a pill that reversed memory loss in mice. Rats? Don’t know. Anyway, besides wondering how they could tell what mice do and don’t remember, my main thought was – OH MY GOD, I can’t even imagine my dad’s memory coming back. How mortified he would be at what he’s been up to. You hit the nail on the head, there. As well as with the guessing. There’s so much guessing.
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Thanks for sharing such a beautiful post! I lost my mom in 2009 to pancreatic cancer and at the end, we really didn’t know her at all. she wasn’t even recognizable. Today, her sister (my aunt) suffers with Alzheimer’s and after several strokes does not speak but in the beginning, she displayed a lot of the same behavior as your mom. It is quite sad really that in spite of the valuable lessons I was taught, neither of these wonderfully amazing women taught me how to live without them. Hugs from my heart to yours, and especially to your dad.
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Thank you for your lovely comment Gale – I am sorry to hear about your aunt and your mum. Best wishes and keep strong x
Thanks for your touching post about lessons you’ve learned from your wonderful mother. My mother had Alzheimer’s, but continued to give me some valuable advice until her last days. Best wishes to you and your family!
Thank you Ron for your kind comment. Best wishes to you too
I can never decide whether to read your blog when our mutual friend Sian shares them on FB. I know I will understand every word because our situations are so alike, my Dr Dad is caring for my Alzheimer’s riddled mum, and our hearts are breaking for both of them. So when I read your words I inevitably shed some tears as I feel and share every word……but I also take some weird comfort and solidarity from your words. So thank you – I send understanding, sadness, shared dismay and hopefully some strength because we will both continue to try as hard as we can to support our wonderful Dads, and help our beautiful dearly loved mum’s to try and retain some dignity through this shitty shitty journey – keep blogging – it’s beautiful xx Jacqueline
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Oh no! I am so sorry to hear about your mum and the tough time your dad is having also. Sian mentioned you to me, not by name, but she hoped my blog posts were helpful to you in some small way. It is shit isn’t it? Some days are worse than others, sometimes for no real reason other than it just feels harder to cope. Keep strong and try to keep smiling and please get in touch if you ever want to rant or moan or cry down the phone to someone who is going through exactly the same thing (Sian has my number). And, thank you for reading my posts, I am so pleased they offer a little comfort. Best wishes to you and your family, Sarah xxx
Taking care of my mother with Alzheimer’s was a mixture of pain and joy, frustration and inspiration. Deep down I knew she could still hear, feel and love. All the best on your family journey!