We are resilient us humans aren’t we? We change, adapt, grow as our situations move around us. I believe that we subconsciously reassess what is acceptable or normal and reevaluate our lives and the things in it against these new parameters constantly. I suppose age has a lot to do with it (I would never have been seen dead as a teenager with my hair in a pony tail, now I couldn’t care less), as does experience. The value of things changes as we grow up and grow older. Things that were once important, are less so as we age, and things we had no time for (like our parents) become ever more precious to us.
Adaptability, I have found, is essential when dealing with dementia. The goals are permanently changing. You constantly have to change your view on what is a good day and what is a bad day. What you think is a good conversation and what is not. What you are able to deal with emotionally and what makes you falter.
Mum has been in hospital twice in the last 6 months. Once in September, when she went voluntarily to the local cottage hospital as her delusions and aggression were getting so bad, the GP and consultant thought Dad needed a break from her (often) violent behaviour. And, once in early December – to a specialist psychiatric unit in a hospital near Glasgow.
The first experience was pretty horrendous. I am a huge fan of the NHS and the majority of the people who dedicate their lives to it, but my personal experience of this cottage hospital and the staff therein left me feeling bewildered. Or maybe I overreacted?
She was admitted on the Thursday and I took the kids up with me on the Saturday morning, where, after a sandwich and a cup of tea, we all walked up to the hospital in the warm afternoon sun to see Granny and take her some grapes and recent photos of everyone. Dad had been advised to stay away for a few days, as her aggression and anger towards him was pretty explosive. But…he was desperate to see her and we agreed that he should come into the ward with me, his excuse being that he was showing me the way to the hospital – I didn’t want to get lost, did I, Mum?
As I walked into the small ward (it had only three patients, one of whom was my mum, the other two looked like they were corpses waiting to be taken to the morgue – I kid you not). Mum walked towards us, clearly happy to see the children (I think any children would have done to be honest, mine were not particularly dear to her this day). Then she noticed my dad, edging in behind me, head down, awkward in his stance, apologetic in his gait. “What is he doing here?” she said, pointing at him. “I don’t want him here!” I explained that he had shown me the way to the hospital, as the (lovely) nurse on duty ushered him out into the corridor to wait.
She could hear him though, chatting to the nurses throughout our visit. She never really focused on me or the kids, she kept glancing to the door, a cross look on her face, occasionally muttering about him pretending to be Stephen, or Stephen’s GP and no one else knew what was going on, but she did. She did.
Over the next few days, the paranoia slowly transferred from my dad to those in the ward and the nurses who helped her every day. I remember visiting late on the Sunday evening, my second visit of the day. I went alone, I left the three terrors at home with my dad. She was emotional and lonely and it broke my heart. It was so much easier when she was angry or aggressive, or confrontational, because then, I could get cross with her, I could feel angry with her for having this bloody awful disease…but when she was sad, like that evening, and fairly lucid with it, it was and still is the hardest thing to deal with.
She told me she was trying. She held my hand and told me she would go to classes to learn how to cook things again and would start her dance classes again.She was going to get her brain active and work so damned hard at keeping well. I believed her. We cried. We hugged. Then I tried to help her find her toothbrush and toothpaste (she kept packing and re-packing her things, moving them around the little cupboard at the side of her bed. Rummaging in the other patients’ cupboards too!) and I couldn’t find either. Don’t worry, I told her, I’d bring some more tomorrow and I’d ask the nurse for some tonight.
I did. Ask, that is. I interrupted what looked like a fun conversation in the nurses’ office at the end of the corridor, with three nurses and a Sister sitting comfortably drinking their tea. I explained my mum’s predicament….she’s misplaced her toothbrush and paste, I’ll bring some tomorrow, but do you have any spares or anything she can use for tonight? They explained quite clearly that they didn’t – and if I’d have thought about it logically, I’d have realised that due to health and safety and other rules that probably existed, of course they wouldn’t have spare toothbrushes to hand out – this wasn’t a bloody hotel was it? Stupid girl.
About to thank them and leave, I was shocked to hear one of them start laughing. “Sorry, but we don’t normally get asked that” she smirked, ” most of our patients don’t have their own teeth!” They all started to guffaw.
In books, you often read about how the main character feels like they have been punched -something shocking has happened and they feel winded and breathless. That is the first time I have ever felt like that. They were laughing! They found humour in the fact that my mum, at just 65, was in a geriatric unit with ladies who looked like they had already taken their last breath (honestly, I went in one afternoon and found one of them up and about and I nearly screamed with shock!), I don’t think I could have felt more sad or aghast in shock, in that moment.
Mum stayed in the local hospital for 10 days, until Dad marched up there and demanded she be allowed home. She had not been sectioned and was in there voluntarily and he missed her. Her paranoia was now totally directed at the nurses (who she thought were trying to kill her) and the other patients, which meant she knew my dad and cried every time she saw him. She missed him and wanted to be at home.
This paranoia though comes back….it is a sly, sneaky little bugger, it seeps back in and after a few weeks back at home it had started again. Dad, not being the right Stephen. There being other men in the house. Her aggression and anger. Her delusions and hallucinations. As my siblings and I sadly predicted, things eventually escalated and she was put into a specialist unit for several weeks in December through to the end of January. Again, her paranoia transferred to those she was “living” with and she ended up knowing my dad again and yearning to be with him.
Visiting her in this unit was hard. When we walked in to the waiting area, you could see into the patient’s lounge area and I spotted her, looking tiny and frail in a tall-backed pink faux-leather armchair, with wooden arms. The newspaper was laid out in front of her, but she was just staring into space, seemingly unaware of, or uninterested in anything going on around her. Dad and I spent a couple of hours with her that visit. We had Mabel, the Monster, with us too, which helped to divert our attention away from the misery of the whole situation. It was a nice distraction for Mum too, even though she was unable to focus on her for more than a few seconds at a time.
She came home several weeks ago, at my dad’s insistence. He wants to look after her for as long as he possibly can, even if this means she is vile to him, she is difficult to be around, she is aggressive and agitated, she is incapable of doing anything for herself. He just wants her home. So she is. For now.
I called her twice today and it has not been a good day. You always know when she is ‘bad’ or she’s gone ‘crazy’, as she answers the phone aggressively. “Who is this?”, or “Who am I speaking to?!” The gentleness from her voice has gone. The mum I yearn to hear when I call, is simply not there. Dad, however, is forever optimistic and positive. “Oh, yes, she’s fine” he will say when I call. “We’ve had a fairly good day, Mum’s been fine really, just a bit confused sometimes. Nothing I can’t cope with.”
Resilience, you see. We must adapt and overcome, or in my dad’s case – adapt and cope, dodging the unpredictable crossfire as he tackles each day afresh. I am thankful for him and worry about him in equal measure. I am also hopeful, that on some level my mum knows. I believe she must know, somewhere in the darkest corners of her brain what is happening, I see it sometimes in her eyes -the fear, the uncertainty, the vulnerability – and I know, that too is what my dad sees when he looks at her sometimes. He sees his Jane. The girl he fell in love with as a teenager (she had good legs, he says) and has dedicated his life to. The girl who never really felt worthy of him and of her blessed life with him. He looks for his Jane and, at moments through the day, I am confident that he sees her. That is why he adapts and copes. For those fleeting glimpses of her. That is why we all do.