In many ways, I’ve lived a very charmed life. I haven’t lost anyone close to me since I was a child, nor have any of my family members been struck by serious illness. I’m not saying this to be superior or self-satisfied. I am merely expressing that I know how extremely fortunate I am. And also to show how difficult it is for me to come to terms with what is happening to my beloved Nanna, and what has been happening to her for almost two years.
Dementia. What an absolute bastard!
Today my Nanna had another stroke, sending her to hospital for the third time in I think as many months. It seems now, if it’s not a fall it’s something else. It’s the tip of the iceberg in what has been a worrying time for us all. She had her first “mini stroke” in 2014, and we think that this was the start of vascular dementia. It was when her writing started to go off, and she began forgetting things. It was the first signs that something beyond old age was happening to Nanna. Since then, I’ve lost count of the times she’s been in and out of hospitals or care. Nanna was frustrated to begin with, and I don’t blame her. She was fiercely independent and stubborn.
This is the first issue I want to blog about. The use of the past tense when I’m talking about Nanna. She was independent. She used to do her own shopping. She’s not dead- yet I slip into this pattern of talking about her all the time. The past six months has seen us lose more of who Muriel was than since this whole thing started. I think this is why I’m writing this post. My blog sometimes touches on my own personal vulnerabilities, but this is more than any of that. I’ve always said that I post the good and the bad, and in this case the heartbreaking. Writing is how I work through my feelings (I don’t talk like normal people). My Nanna was (there’s that word again) a feisty little thing. She’d had a tough upbringing and was fiercely resolute as a result of that. Nanna would always speak her mind; sometimes that was upsetting but most of the time it was glorious. When someone like Muriel tells you she loves your or is proud of you, you know fine well it’s genuine. There has never been room for BS in her life, let me tell you!
Another tough aspect I’m finding with the dementia is the impact it has on my Dad and my sisters and I. The Wilson side of the family is small, just the three girls, Dad, and my Nanna who, let’s face it, is the centre of the gang! I was devastated when my Dad rang me to tell me what had happened today (Tuesday). I’m frustrated that there’s nothing we can do for Nanna. She’s never going to go back to being that gobby old woman who didn’t censor her thoughts. My Dad, god love him he is an amazing son, has to go into her house every day, not knowing what he’s going to find. Has she fallen and broken her leg? Again? Has she messed up her bed because she couldn’t make it to the toilet? Has something happened to her to take another piece of her mind and soul away? Is she going to be verbally abusive, or in some cases recently, borderline physically abusive? Is she going to be lost and confused? I didn’t realise just how hard dementia was on people. It’s not just a little old lady going a bit “mad”. It’s someone losing their own identity. It’s the strain on their loved ones who have to see them diminish before their eyes. My Dad is looking after my Nanna (she has carers, but my Dad still takes on so much responsibility- a lot more than a lot of “children” do, so I’ve learned), and working as much as he can around her. My sisters and I do all that we can around work and bringing up our own kids. I felt so selfish when Nanna was most recently in hospital. I hated seeing her in there, and didn’t know how to talk to her (my big sister Lucy is so much better at this). I’d either clam up or just talk nonsense. Useless. That’s how I felt and how I probably appeared. I got a grip and got over it. It’s not about how I feel, it’s about giving my Nanna a bit of happiness or a break from monotony in her day. She was home last weekend and I could take Noah to see her, which I think Nanna appreciated as he cheered her up no end. Noah was over the moon to get to see her too, as he had missed her during the stint in West Cumberland. Even through all of this she loves her visits from the Grandkids and Great-GKs.
Maybe I seem a bit melodramatic! Most of the time I can cope and I’m fairly matter-of-fact about Nanna’s situation. But tonight I’ll admit, I had a good cry. Jesus, I’m crying writing this. I’m thankful that my Nanna is still with us, but gutted that she’s not Nanna Mu anymore. Not really. I’ve been angry tonight too. Not in a “why me”, self-pity way, but in an angry at dementia as a whole way. It’s cruel and frustrating. My Dad made a comment about my Nanna which struck a chord with me. I asked if he was okay, and he said “Yes, but sad for Mam. If she was a dog we’d put her out of her misery. She’s got no quality of life.” Direct? Yep! But sad and true. And the whole point of why we feel angry and useless and despondent a lot of the time, whilst putting on a brave face so Nanna’s life is as normal as it can be now.
This post might seem a bit sorrowful, but it’s just how I feel tonight and I wanted to share this part of me with the few friends and family members (alongside those welcome strangers) who read this. I’m not after sympathy. I just want to put a bit of our story across. I didn’t fully get the implications of dementia until it clawed it’s ugly self into one of the people I love most on this planet. I’ll think twice about casually slinging the word “demented” about, or judging someone for seeming “crazy”. You never know whats going on with someone.
I’m going to end this post on a more positive note. Nanna’s still with us, and we just need to remember who she was pre-dementia. I’ll always remember the time she took me on holiday to Ambleside when I was about 10. I point the hotel out to Andy every time we drive by it. We went to the cinema to watch Sense and Sensibility, we attempted to feed the swans but I ran a mile, Nanna ordered me fish but it came with it’s eyes still in and I was terrified (much to Nanna’s vast amusement). I’ll remember the time she made a comment about me being fat (thanks Nanna), and my Dad told her off and Nanna and I both cried about it- no matter what gets said in our family, we still love each other no matter what. I will always prefer the phrase “To Halifax with you” than “To Hell with you”. I’ll always remember that she “never” swears, but regularly says “shite” and “bugger”. And I’ll always remember Sherry-ade, that she used to let my sisters and I drink during our 11am visits, especially in the run up to Christmas.
My Nanna might not remember these things sometimes, but I’ll make sure I remember them enough for the both of us.
Update- We’ve had our ups and downs since I wrote this post two weeks ago. I didn’t publish it originally as Nanna got very poorly, and we were told that nothing more could be done. It was a very tough time and hard on us all. Then, miracle of all miracles happened, and she’s turned herself around completely! She’s eating well, chatty and seems to be remembering life well. It’s a pleasure to see her this way. Long may it last!
For more information about Alzheimer’s and Dementia, and what we can do to help those suffering, visit www.alzheimers.org.uk