Caring for a loved one with delirium: raw truths

Imagine, if you will, a large battery that, when exposed to certain environmental factors, discharges rapidly until there’s no energy left in it. That’s me. One hour in the presence of my mother when her delirium is high, when every word spoken is nonsense and paranoia, with my heart bleeding at seeing her suffering, and I’m done. 

Each and every time I come away from my mum in that condition of madness termed delirium, I would welcome a bullet in my brain or a rope around my neck and a kicked-away chair. For the peace. For an end to my own torment of worry. You’ll only be shocked at this if you’ve never been a primary caregiver for an elderly and/or mentally-challenged loved one. Thoughts of suicide are extremely common among carers but, for my part, what happens with me, they aren’t suicidal thoughts. There’s a world of difference between the thoughts I have and an actual desire to kill myself, which I absolutely have no wish to do. I reiterate: I am not suicidal. 

We all die. That’s a fact. But when you’re caring for someone who is very old and falling apart in a most undignified, cruel way that demolishes any faith you once had in benevolent deities and humanity itself, you develop a terror of a slow mind-eating crawl towards your own end and hope, knowing hope is pointless because life just is and will do whatever, that your own end, when it comes, will be swift and frankly kinder to those you love than the obscene deterioration that modern medicine has enabled. Be aware that your doctors will do everything they can to keep you alive, no matter how lacking in quality and happiness that life is. They will only let you go if you die in your sleep unnoticed until the next day, or you suffer a heart attack and have prepared for that possibility by asking for a DNR (Do Not Resuscitate) notice to be put on your medical files. My mum has a DNR. It sits on her coffee table, a constant visual reminder, just in case a paramedic might otherwise accidentally go against it if it wasn’t seen by them. 

Too often I feel like I don’t know who or what I am any more. I don’t have a partner these days, so I don’t feel like a particularly sexual or connected being. I remember doing everyday things with a special someone, going to IKEA or the supermarket. Being held. Bickering over banal little details. The usual stuff of couples. No, what I am, when I’m not letting off steam like a dog off the lead, is an automaton: I exist to serve, to fulfil my sense of duty, obligation and conscience. I am the prisoner of all three in my own head. Others see this as laudable, heroic even – just as long as they have never done it. Those who have cared, they will understand the drag of it all. The utter tedium of what feels like a half-life. 

There is no self-pity in stating all this, only candour. What can you do to help? Nothing. I don’t see how anyone can help. Oh, there are support organisations that hand out leaflets and phone numbers and website addresses. I’ve got quite a collection building up. But ultimately, being in my position of one-to-one carer of someone with delirium is quite the loneliest thing to be. Because of my ever-present responsibility, I feel lonely everywhere and all the time. Company does not affect it. 

It will end, eventually. It doesn’t feel like it will. Delirium kills, as does old age. Life is, after all, fatal. And when it does end, the reward for all my care will be a crushing emptiness and extreme guilt for having wanted it to end. Bad son wishes his mother, who he is supposed to love, gone forever – when actually my mum is already historical in almost every way. I feel cold and dead even though the fact that my heart breaks every day proves I have feelings. Seeing my mum suffer, being powerless against the delirium eating her mind, destroys me over and over and over and over again. 

At some point I intend to write like this in longer form, a book about the mind of a carer and how it is tortured until you think you cannot bear your own suffering any longer. I already have C-PTSD but imagine most in my situation, as battle-damaged as any soldier in war, end up with the condition. Unless, as I often think, I am failing where others succeed. But I don’t think that’s true. There is no way you can win against the infirmity, disease, mental deterioration and eventual death of someone you care for and are sworn to protect as best you can. We are set up to fail. The game is rigged. The dice are loaded. Yet a feeling of being a total, irredeemable failure haunts me this evening having sat in my mother’s living room, ignored, while she conversed, laughed and argued with people who don’t exist. Her best friends are her ex-neighbours who chat with her, bring her pies and make her cups of tea. One died of Alzheimers about eight years ago; his wife, the other one, was loathed by my mother. I was shouted down for saying my best friend hasn’t broken his foot. The response I got when I asked if she was managing to do her full body washes at the bathroom sink (she will not allow anyone to help her bathe in the bathtub) was to snap that I wanted to look at her private parts. 

Day after day I am wiped out, broken down. There is no reward in doing what I do. Of course I don’t seek or crave it but we all, without knowing it, quest for balance. Equilibrium. There is none. Tonight I am utterly miserable and, as happens a lot, God strike me down dead if I believed in a deity that gave a shit, I will go to sleep wishing my mum could go peacefully in her sleep right now and be with my dad. She doesn’t want to be here. She constantly says she wants to die. And I think myself to be wicked in hoping she gets exactly what she wants. I don’t want to hold onto her. I have already, in my heart, let go. I love my mum so much. I do. I wouldn’t do and suffer if I didn’t. But watching her decline, trying to somehow manage it, is quite the most destructive thing to my own person I have ever experienced. If only the universe was merciful. Then, if it was, delirium wouldn’t be a thing.

myfibromyalgia book cover

Andrew’s latest book, myfibromyalgia: one man’s experience of living with chronic illness, is out now in all Amazon store territories the world over. The ebook is £5.99 and the paperback £8.99. UK Amazon link.

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