MENTAL MONDAYS | Dementia & My Crazy Mum
My mother’s mental health was always delicate. I say this now only because I can see it looking back through an adult’s eyes; a mother’s eyes. I certainly didn’t see it at the time. Growing up, she was just Mum. Strict, occasionally emotional and at times, challenging. She was highly opinionated and fiercely protective of her brood (my older brother, me and my sister). She could be emotionally erratic and never suffered fools, almost to the point of being embarrassing to a young child or teenager, struggling to find her place in the world.
Family was everything to my mum and I was immensely proud of her. I mean, she could do anything. Literally. That woman achieved over and over again, never tiring of trying new things or attempting to do what to others might have seemed impossible or too much of a challenge. She was a brilliant woman. She was a brilliant mother.
And then things started to go wrong. Around 5 years ago, my mother’s behaviour became slightly tricky. She would snap at us for no apparent reason, even snapping at and criticising the grandkids, who she adored beyond reason. She seemed unhappy and cross with the world. It was a challenge knowing how to handle her, or to know which Mother would show herself; the emotional, needy one, or the acerbic, snappy one. She would either be clinging to us, crying that we were having to leave, or there would be an endless stream of snide comments that were completely unwarranted.
It got to the point where my dad asked me to have a word with her. She had stopped playing golf (because none of the other ladies were nice enough to ask her to play), she had stopped cooking (because she had spent most of her life cooking for others, so it was now time for my father to cook for her) and she had stopped driving (because Dad would criticise her anyway, so he might as well do the driving!)
I was visiting with my 3 kids and we all went out to the park. I headed back to the house with my mother, as my father took the kids into the town to the ice cream shop. We chatted about this and that and nothing at all. Then, as we were about to pass the petrol station near their house, I asked her if she had any crisps at home.
Now, I should point out here, that it’s a bit of a family tradition – a glass or two of wine with a few nibbles as we’re preparing dinner. The in-joke though, was that my parents only ever bought plain, ready salted crisps. For years, we had joked about it: “Why on earth would you not buy crisps that taste of something!?” was the general gist. Everyone usually laughed. Mum confirmed that yes, there were some Pringles in. “Are they plain ones though?” I joked. “Probably.” “Well, I’ll just pop in here and pick up some that taste of something,” I said laughing as I nudged her with my shoulder. “Nothing’s ever good enough for you, is it?” she snapped at me, with enough venom in her words to stop me dead in my tracks. I didn’t know what to say, so I went in and bought my cheap, tasty crisps and went back out. She was waiting, looking like thunder. It was now or never…
“You don’t need to say things like that, Mum,” I ventured gently. “It’s hurtful. Why do you do it?” “Do what?” “Make comments like that? There was no need for it, I was only joking and you know it.” “I didn’t mean it.” “But, I think you did. And for a while now you’ve been snapping and reacting and saying things that don’t need to be said and that are hurtful to your family. Why are you doing it? What’s going on?”
And, the floodgates opened. We walked home slowly and she cried. She cried about how she didn’t feel worthy and how she had always felt unloved as a child. She told stories of never having a birthday party, about listening to her mother tell the neighbour that her big sister was her favourite, about not feeling good enough or welcome any more at the golf course…..lots of stories that backed up her feeling of unworthiness.
I listened and I empathised but I kept telling her that her behaviour wasn’t right. Lashing out at the people who loved her most in the world was not the way to deal with it. She agreed and after another couple of hours of crying and talking about how rubbish she felt at everything in life, we agreed that perhaps she would get some help. Talk to someone about how she was feeling. Counselling or another talking therapy to help her kill off her demons. She cried. I cried. We hugged, and I felt like I’d made a difference. She was lighter for the next couple of days, more upbeat and positive about life. Dad thanked me. He thought it had helped.
I thought that was it. I left them there and headed for home, feeling f**king smug. Like I could change the world.
She quickly fell back into her depression and her moods. “It could be linked to the depression and trauma from her childhood,” Dad explained. “The psychiatric nurses are coming in every week now to chat to her and to see if they can help.” Mum was relieved. “I’m going to do all I can to get better,” she assured us all. “I’m going to work hard and do all they tell me to do.”
Little did we know at that point that the depression wasn’t the problem. Her depression was a symptom of something much worse…
She was diagnosed about 10 months after our little “chat”. After she had started to hallucinate and see scary men around the house. After she had spent months calling my brother, me and my sister every hour to complain that my father had gone missing and that there was a strange Stephen living in the house, pretending to be her husband. After she had run out into the snow, armed with a knife, thinking my dad was trying to harm her. After he found a kitchen knife under her pillow. After….after……after…… the stories are endless and many are simply too painful to re-live.
The scans showed a reduced blood flow to the front temporal lobe. Vascular Dementia. That was the name of the thief that stole her away. Shit. F**k. That sounds bad.
And it was.
5 Months after diagnosis my mother was in hospital due to her delusions and aggressive behaviour. She misplaced her toothpaste and toothbrush. I asked the nurses if they could help, they laughed at me. “We don’t normally get asked that – most of our patients don’t have their own teeth!” I was too stunned at their insensitivity to respond. The fact Mum came home with a bag full of old ladies’ vests made us all laugh – Mum had turned into a midnight pilferer!
8 months after diagnosis she was in a psychiatric unit in a hospital 70 miles away from my father, as this was the only place that could cope with her behaviour. She stayed for just over a month and was there for Christmas that year.
9 Months after diagnosis she needed Carers who came in twice a day to help with her tablets and to help get her dressed and undressed, washed and cleaned up for the day, or night ahead.
13 months after diagnosis, Mum went missing. The police were called and after 3 hours the heat-seeking helicopter was launched. She was found stuck in a fence. She couldn’t figure out how to undo her shoe, which had got stuck as she tried to climb a fence and walk across a farmer’s field. She lay in a ditch for 3-4 hours. Luckily it was July and not the middle of winter.
18 months after diagnosis, my mother needed round the clock care. She needed help going to the bathroom and with cutting up her food. She spent all her days walking around her home, searching for my father who was there with her all the time. She talked to the bin and the tea towels, thinking they were children. She paced from room to room, sometimes all night, looking for something that she could not find; something to offer her comfort in her terrifying world. She never found it.
27 months after diagnosis, Mum went into a care home. My dad had damaged his back trying to lift her and was no longer coping at home. Mum didn’t understand. She was vacant and uncommunicative. She knew none of us. We decorated her room to make it look like home. We took her favourite CD’s and played them for her. She just sat and stared out the window.
32 months after diagnosis my mother needed a wheelchair to get around. Her legs buckled under her when she tried to walk and so she needed help to move from her bedroom to the dining room, then the lounge and then back to her bedroom again. A hoist permanently hovers above her bed, like a giant claw, ready to help the nurses manoeuvre all 7 stone of her.
44 months after diagnosis I went to see my mother. It was Christmas 2018 and I took the kids in to see her. She was slumped over in an armchair and seemed to be fast asleep. I stroked her hand. I tucked her hair behind her ears. I patted her legs gently and told her all our news. Mabel and I sang her some songs and did “round and round the garden” on the palm of her hand. We got nothing back. Her eyes remained tightly shut. Her head lolled to one side. I then told her it was time for us to go and she started to cry, her face crumpled up in grief. I could hear quiet, strangled sobs in the back of her throat. I held her tight and told her I loved her. I explained she was not alone and would never be alone. I told her it wasn’t fair – that none of it was fair. And, together we sobbed.
Dementia is a mental illness. It strikes at the very core of what makes a person individual and strips them of all the things that matter; their memories, their joy, their talents, their smile and their ability to do everything and anything. In its place – in the early stages – it leaves fear, anxiety, terror, vulnerability and unpredictability. In the late stages, it simply leaves a shell.
We don’t know if Mum knows where she is or how her life has turned out. I hope she has no idea. I hope she is in a state of calm bliss inside her head. I hope she is dreaming nice dreams and re-living happy days. She was a dancer, a ballroom and Latin dancer, it is how my parents met; she taught that gangly, tall, socially awkward teenager to dance. The fact her face crumpled up and she sobbed when I told her we were leaving has shaken me to the core. The only way I was coping was by telling myself that she had no idea what was going on and was in her own world, unaware of anyone and anything. Now I am not so sure. All we can do is hope it was a coincidence. That perhaps in her distorted reality something went wrong at that precise moment and caused her to react physically. I bloody hope so.
I hope that inside her muddled brain and the thoughts that make it through her distorted and tangled wiring are good ones. I hope she is dancing in all her dreams. I hope.
Follow Sarah and her mum’s heartbreaking journey over on her blog – My Crazy Mum: https://mycrazymum.com/
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