Caring Too Much?

Caring full time for someone is hard work. Really hard. It's not just the mundanity of it. Carers sometimes feel as though they're strong enough to handle whatever comes next. It's a duty. An obligation. Guilt may creep in for thinking that someone else could do a better job, so you stick with it. You step onto a path that looks solid and manageable. And so the journey begins.

I found out recently that dementia isn't a disease in itself, but a symptom of other diseases, cognitive decline being a key feature. Alzheimer's, Parkinson's, Lewy's Body, Vascular. All contributory conditions. Hard to detect in early stages. Some can bring on obsessive or addictive behaviours and are often misdiagnosed, or undiagnosed when a patient is in denial.

Caring for someone with an undiagnosed condition, with all the hallmarks of dementia, is frustrating. There's been a taboo, almost, about dementia for a long time. And behaviours can be uncomfortable to observe. Some are amusing, which probably isn't pc to say these days. Other issues are less so. They include verbal and physical aggression. Incoherence. Rambling. Ranting. Hallucinations. The list goes on.

Patients become confused, and in the case of my mother, she's aware of what's going on, as her brain isn't totally damaged. She gets frustrated at not being able to remember how to complete basic tasks. She can get dressed by herself, but sometimes finding the right clothes - or any clothes - is challenging.

She's given up cooking, cleaning, and her personal hygiene went down the pan a while ago, so I gently remind her to brush her teeth. She's scared of getting in the shower, seeing reflections on the perspex as something to fear, and I've adapted the process accordingly. I feel her pain. She's always been fairly independent, until her mid-forties and into her fifties. Menopause. Addiction. Depression. And, I wonder, if those were symptoms of something else, so intertwined it was difficult to tell.

One one level she's very aware of stuff around her, but her perception is often confused and she can't always find the right words to express herself. Communication is becoming harder.

Mobility is okay, though I've noticed frailty creeping in.

Most frustrating of all is getting help. She refused to be assessed for years because she drank heavily for over two decades, unwittingly enabled by me and other family, trying to pacify but only making her worse. She stopped drinking this last Christmas. I was so happy. Naively, I thought that would improve her condition. It has, to some degree, as she's had no more falls. But the damage internally has been done. Though I've no official diagnosis. There's a report somewhere, on some medical professional's desk, that's waiting to be processed. An action plan is imminent, I'm told. That was in May. I still don't know what the results of the CT scan are.

She has a roof over her head and someone living with her, so the memory team have marked her case as non-urgent. But it's become more urgent. I'm at breaking point. Years of emotional abuse, aggression, and esteem-destroying insults have taken their toll. I enabled that. I stayed. The loyal, self-suffering martyr, thinking I could help.

But I've become part of the problem. Our relationship has become toxic. I find it difficult being in the same house, let alone the same room. I'm now trapped because of the pandemic, and my own lofty idea that I could take care of everything myself. But I can't. Mum's needs and mine have diverged until we can't go a day without an argument or cross word. Her demands, because of her condition - and conditioning - are more imperious than ever. She forgets (selectively?) what she's said to me, and denies it.

Not long ago she threatened to call the police on me, saying I was keeping her a prisoner because she forgot that she'd just been out for a walk. I'll be honest, I nearly gave her the key and told her to walk! The key, by the way, is in plain sight. It isn't hidden. But she forgets. And she's frightened to leave the house alone. So the threat was to get me to take her out again. In her own inimitable way.

Burnout is common, I'm told. Yet the system that's in place, rightly so in most cases, puts the patient's needs first. In my opinion those needs, and that of a full-time live-in carer should have equal gravity. Without one, the other suffers. The realtionship breaks down. Tempers flare. Depression dips to dangerous levels. On both sides.

I wrote a letter to mum's GP today. An explanation and a plea. I'll deliver it in person to the clinic in the morning. I've had to make a decision to move on. I'm breaking a promise. I told mum I'd be with her, always. But being with her is causing so much distress and anguish. On both sides. So I'm not renewing my lease on our shared maisonette. I'm arranging further care for mum, in accommodation that's more suitable. Mum needs someone to talk to; to hear her; to understand. I need freedom, space, and a pathway to building a new life.

I'll always love her. Without question. But sometimes you can care too much. And that becomes the problem.