Do you remember the time?

Alzhiemer's, death, Dementia, grief, Louis Theroux, multiple myeloma, Spoken Word, writing

I’ve been in my feelings today.

After a recent succession of bad luck with unrelated, unfortunate circumstances that have lead to multiple insurance claims, police reports and major financial hits, I decided to curl up on the sofa and unlock my emotions by watching back to back episodes of Louis Theroux. I did this because A) Louis is the greatest B) I needed to cry and C) I wanted to be reminded that there’s more important things to focus on in life than having to pay £200 for a broken spring in your car. (Although, honestly, when I got that news this morning bringing the ‘money I need to pull out of nowhere’ total to £1500 I wanted to drive straight in to the Hollow Ponds amongst the Sunday boaters and be done with it. The car, my bank account, life, everything).

*a car alarm has literally just gone off outside as I write this. It’s properly mine. I hope they take it.

I really enjoy watching Louis. He manages to report on the weirdest, scariest, most painful aspects of human existence whilst remaining completely calm and nonchalant. His empathic responses are small but meaningful – a few words reflecting what someone has said, and a pat on the shoulder. I really could of done with a pat on the shoulder today.

I started with the first ep from his new Altered States series in which Louis explores the world of Pollyamourous relationships, in which, as my friend pointed out, someone is always getting a ‘raw deal’. If you watch the ep, you’ll meet Jerry and you’ll understand. Jerry is getting a raw deal.

I then moved on to his Extreme Love series and watched the ep on autistic children. Its a lot. The reality of raising a child so trapped in themselves that you cannot connect or communicate is hard to comprehend. And seeing the strain on all the relationships – parent to child, sibling to sibling, parter to parter through the daily routine of physical restraining, tantrums, miscommunication and heartache. All but one of the parents said that they wished they could take their child’s autism away, that they wished things were different. What a painful and brave thing to admit. There were touching moments of love and humour, but I couldn’t help but feel an overwhelming sense of relief not to be in their situation, and a guilty sense of fear that I actually could be one day if I have children.

There is an episode in the Extreme Love series that I have always avoided. It’s about dementia.

My first real experience of dementia was with my good friend’s grandmother. She was the image that tends to come to mind when we think of dementia – an old frail person with white hair who no longer remembers what year it is and confuses their family members. I remember the thing that really hit me was that her daughter, my friends aunt, had sadly died a few years earlier from cancer and she would continually ask where she was. The family would tell her and the shock and grief would hit her as new each time. How awful, I thought, how awful for them all. I guess after a while they probably started to lie to her about it.

Lying. Generally seen as a bad thing, to be dishonest, to not be truthful, especially to someone you love. When caring for someone with Alzhiemer’s or dementia you end up having to tell lots of ‘white lies’. You have to go along with the person’s illusions and say whatever you need to in order to keep them from panicking, feeling paranoid or scared in their confusion. It’s really hard. Imagine my friend replying to her grandmother, reassuring her that her daughter, my friends aunt, is just at the shops. How painful it must be to tell a lie that you wish was true.

My dad was diagnosed with Alzhiemer’s the year before he died of cancer. I couldn’t bare the thought of him not knowing who I was, or not knowing who he was. The person you know starts to slip away. It’s gradual, it’s scary, and it’s wierd.

For many years dad had been forgetful and we had all become increasingly frustrated with him repeating himself. I would snap at him when he was relaying information or retelling a story he had already told that week, or day. And he would snap back feeling dismissed and unheard. Forgetting and repeating things is a normal part of aging, dad was in his late 70’s, but things started to develop in ways that didn’t feel normal. He couldn’t seem to retain the information of my job, where it was and what I did. He would often refer to it as my new job even though I’d been there for two years. He also started telling stories from his past that when I asked mum about she’d never heard before. They were fantasies he’d made up and believed to be true.

The first moment that the reality of the disease really hit me was when dad called me in to the living room one Sunday evening. He was very frustrated because the TV was ‘on a loop’ again. It wasn’t, of course. He was sure that the same scene had been playing over and over again on the program he was watching. At this point I didn’t know that when someone with Alzhiemer’s is having an episode you have to play along with it. I tried desperately to reason with him, showing him the listing in the TV guide and the time, clicking each channel to show that it matched. I think I was doing this in the hope that he would snap out of it, that the Alzhiemer’s would just disappear completely he would be my dad again. He kept saying “See! I told you! I’ve seen this scene already!” he got really angry with me. With every chanel change “I’ve seen this exact program 10 times this week! It’s stuck!”. We were both stuck, no one else was home. The irony was that in this Alzhiemer’s moment I didn’t know who he was, I didn’t recognise him. I distracted him with the Guardian crossword (which I learned today is called ‘redirecting’) and went upstairs. I felt lost, so I wrote a poem about the experience to evidence what had happened. It didn’t even seem real. Later that night when mum came home I drove to a poetry night in South London, got on stage and read what I had wrote in front of a room of strangers. It was filmed and put online along with the other performances from the night, I asked that the video be on private. I’ve never shared it until today, you can watch it here.

In the Extreme Love ep one women visits her husband of 26 years who is living in a dementia care home. He doesn’t remember that she is his wife and when Louis takes them for lunch, her husband’s girlfriend from the care home comes with and they walk hand in hand as lovers. Louis asks the women if it’s difficult for her to accept this and she says no, that she understands it’s the disease and her love for him is “unconditional”. It’s hard to understand. But I get it. As challenging as it gets you’ll keep caring for that person no matter how hard it is because of the dementia, the autism, the cancer. You’ll keep caring because of the love. The small moments of humour, recognition, closeness.

Dad died 6 days after the video of my poem was put online, about a month after that Sunday evening where the TV was on a loop. In our grief me, mum and my brother shared in the relief that we had all been spared, dad included, the horror of living with full dementia. Our brief experience with the disease has left me with a deep fear of anyone I know developing it. I don’t know if this will resonate or reflect the experience of anyone I know reading this. If you are caring for someone with Alzhiemer’s or dementia, all I can do is tell you how sorry I am, and pat you on the arm.

Two weeks before dad died we were in the front room doing the crossword and listening to the radio. Dad complained that the radio was on a loop. I agreed with him, unplugged it and told him I’d get it fixed or even buy a new one. He thought that was a good idea.