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.

Am I Regressing? 

childhood, grief, loneliness, Self love, soft toy, teddy bear, therapy, writing

Last night I slept with my childhood teddy bear Patchy in my bed. If I said that was the first night since I was a kid. I’d be lying. It’s been a few nights. Over the last few weeks. Possibly months..

I was given Patchy when I was two. He’s not your normal teddy. He’s pink with purple ears, a purple patch on his left eye and a pretuding purple belly button. He used to have a tongue but that fell out. Really wierd looking soft toy come to think of it. But I loved him. He might have been my first love to be fair. I always fall for weirdos.

He came everywhere with me, every trip or family holiday, every sleepover or party. He got left in shops, on busses, at picnics, once on the ferry from Dover to Calais. We always got him back.

patchy in minorca

Patchy, me, mum and my brother, Spain 1990.

patchy 2

Portrait of Patchy, by me 1992.

Patchy today, 2017

So why has this relic from my childhood made a reoccurring appearance in my adulthood?

I’ve felt lonely, really lonely, for a while now. I live by myself. Don’t get me wrong, I fully love living alone, enjoy my own company and am actually quite panicky about having to share a bed with someone else for ever, but night time can be quite hard. I don’t sleep well, never have, so sometimes I search for comfort in those hours. Of course, there’s my cat, who is a total don and fully affectionate, but she’s not one for actual cuddling and usually fucks off at night to survey the garden perimeters and chase foxes. Witness the savagery here.

I’ve never been one for inviting people I don’t know well or feel strongly about in to my space for comforts sake. Since reading the work of Nayyirah Waheed, Yrsa Daley-Ward, Rupi Kaur, Lalalaletmeexplain (seriously, follow and read these intelligent, brilliant women) I have felt empowered, strong and even amused by my loneliness and vulnerability so have been very mindful not to feed in to the insecurities and fears that lead to regretted action, though there have been some moments, and I forgive myself for them. I have known that no matter how much I want to feel the comfort of another body next to me at night, I want that person to be my partner, my best friend, an absolute don, who is up for cuddling AND chasing foxes away.

So I was wondering last night, is my want for a partner the reason I am reaching for something to hold at night? Or am I reaching for the relic of my childhood to fulfil some other need? I’ve had this weird looking bear nearly my entire life. A whole 31 years together. The same amount of years I had with my dad. Did my need to find my partner become stronger since losing my dad? Yes, of course. He was the first man to take care of me. He was the first man I took care of. I miss that care, both ways.

I was never the kind of girl, or women, to daydream about getting married and having a husband and kids. I was never particularly inclined either way. But now, I find myself wanting a child, a family that I’ve started, with someone I love who loves me back.

Kids are fucking mad and absolutely terrifying. Nearly everyone I’ve known from childhood/teen/twenties has kids now and some are on their second, and some are trying for their third. It’s amazing and surreal. I just heard that a girl I have known since nursery is now pregnant with her second child. This same girl came to my house when we were 5 stood in the middle of my room, cried and pissed herself for no reason. Kids are nuts. I want one.

Some of my friends are born mothers. They raised younger siblings and have wanted the dream husband and babies ever since playing at make believe weddings in year 5, hanging sheets off their heads like veils. I was once made to be the groom. I remember being really bored. For some it is devastating that they’ve made it this far in life, and still haven’t got there. Imagine longing for something for so long that you can’t be in control of achieving. Well, you can achieve it, even without the man, but for it to actually be right, with someone you love, seems to be a lot harder than first imagined. And there’s pressure of time, and biology, and there’s a longing, and something missing every day. I’m starting to feel this way, I never thought I would.

Anyway, back to the question, why am I tucking in at night with my childhood bear?

Yes I’m lonely, hugging something (albeit a poor substitute for holding a warm human body) feels comforting. Yes I want to meet someone fall in love and have children with them. Yes, I miss my dad. Yes, this alien teddy bear has held all my tears and secrets (especially as he no longer has a tongue) for my whole life. But actually, it doesn’t feel like he’s back for the adult that I am, it feels like he’s back for the child that I was.

I’ve done a lot of work on myself and my childhood experiences in therapy. It’s been painful but absolutely necessary. I had a good childhood, I was loved, there were shit times though, there always is.

Childhood is not actually a time of total innocence. My 3 year old goddaughter who is the absolute love of my life tells quite impressive lies and was already working manipulatively to get what she wanted out of her parents before she even had sentences strung together. Last time she stayed at my house she insisted on sleeping longways on the pillow kicking me repeatedly in the head throughout the night. She also stole a pebble off my shelf. So she’s a thief and a liar. Yesterday she told me that she had become famous on Facebook for her Irish dancing (actually not a lie) and cried because the balloon she had went behind the TV. Her brother who is 5, and recently obsessed with wearing my white leather platform boots every time he comes round, made citrus mascarpone cheese out of curdling milk with a lemon and straining it. It was actually really impressive. He also put granddads fizzy lemonade in the microwave. You’ve gotta love kids.

For my job I work with young people. Some of them are very vulnerable, at risk and with complex needs. I am made for this field of work, and I honestly love my young people as if I had actually given birth to all 50 of them, they are all amazing and have me simultaneously wanting to laugh, cry and tear my hair out almost every day. But I have realised something, I am fully committed to caring and supporting vulnerable people, mostly young people, the majority of them boys, and somehow this has transferred over in to my personal life. I seem to attract men, who are actually lost little boys. For a while the dynamic works because I get a lot of my self worth out of being the caretaker and enjoy the role within a relationship. It always gets challenging though when I become vulnerable, in need, difficult, throw a tantrum or behave in an insecure way. All of a sudden it’s two children fighting. There’s lemonade in the microwave and uncontrollable tears. With no parent to govern the situation, mediate the argument or distract with ice cream. These men need to heal, to look after the child in them, so that they are able to enter in to a relationship capable of giving the same amount of care that they receive.

Children are self centred and when we haven’t looked after the child inside (especially when the child wasn’t actually looked after when growing up) this can become a presenting behaviour in adulthood. I was once in a long term relationship where I was allowed to be the child. It was a very complex time, my dad was dying, I needed looking after, but I became a total brat. My behaviour became totally unacceptable at times and it was a very unhealthy dynamic. Weirdly, the opposite issue happened here, when I became stronger, less vulnerable, he couldn’t cope and became very difficult. I think he knew that once I realised I didn’t need him, I would realise I didn’t want him. He was right. We went round in circles for 4 years. I will always be grateful to him for his care, I would say he saved my life more than once, but thinking of the relationship now makes my stomach twist. It was very messy. I learnt a lot.

So, Patchy means a lot to me. He represents home. The home that I grew in. The home that I lived in until the day I moved in to my flat. The home I missed when we went on holiday. The home I would come back to after living away in America. The home where dad first got sick when I was at University in Bristol. The home dad was last in before going to the hospice that night. The home my mum has just put up for sale.

He has taken care of my comfort needs since I was a kid and I have kept him safe from any Blue Peter jumble sale, charity clear out or childhood ‘swapsies’ agreement (how bad was the immediate regret after swapping toys with your best mate?! I always got bumped!). He is literally the oldest thing I own, and I will keep him safe.

Until I have a child of my own to take care of, If I ever do, I will take care of the one that I was, that sometimes, I can still feel that I am, and from time to time I will allow the comfort that Patchy brings.

Some words about grief.

cancer, death, grief, multiple myeloma, writing

This Saturday will be two years since my dad died.

I feel compelled to write, although I am struggling to. It isn’t easy I guess.

Death is inevitable, part of our nature, and accepted as such. But it is so weird. It is the surrealist thing I have ever experienced, and also, the realist.  Me, my mum and my brother were with dad when he died. I still cannot comprehend what happened in that moment, where one minute there was a life, and the next it was gone. He was gone.

There was a body. It wasn’t my father.

If you have experienced death, seen it, you may know what I mean. But, it is not for me to say, no two experiences are the same. I cannot know what my mum or my brother experienced in those minutes. Nor them I. All I know, is it was the single most present moment of my entire life.

Writing about death is fairly easy I think. There is death in many great works of literature (and not so great). Death is explored and represented in the creative arts. It is written about in religious texts, and biological text books. It is almost, popular.

Writing about grief is not so easy. Grief is the ugly aftermath. It is not heroic, tragic or romantic. It is brutal, it is complex, it is forever.

It is also unpredictable.

In the days that followed my dads death, I danced. It was an uncontrollable urge. I would listen to music, usually through my headphones, mostly house or RnB and I would dance in my flat. Sometimes it was manic, sometimes it was weary, sometimes it was for hours at a time. It was weird. I tried not to judge it.

Grief can be private. I consider myself a very open person, those that know me would probably agree, those that really know me would definitely vouch for my honesty, particularly when it comes to my feelings. I am not afraid to feel or be vulnerable. Though this grief, this loss, is so huge, so completely incomprehensible at times, I can’t share it. I find myself locked in, unable to open up, even with my closet friends. Wanting to protect it. It is disabling and because of this, it is isolating.

My dad was sick for 11 years with a rare type of blood cancer called multiple myeloma. I had always imagined that when he died me and my family would pull together and be comforted in the shared devastation. There were moments of this, but I wasn’t prepared for how alone I would feel. We had lost the same man, but we had all lost a unique relationship, we were not experiencing the same loss, and we were not using the same coping mechanisms. In the immediate days after, my brother panelled the hallway and built a shed from scratch. Mum was either oddly hyper and chatty, or wailing. I went in to myself, unable to be around either of them. It was really hard to connect. We were all grieving in different, and at times conflicting ways. Moving around each other in a fog. Trying to keep breathing. I lost friends. I’ll never really know which ones left and which ones I pushed away.

The reason I write this, is not to make a social comment on how society conditions us to deal with (not deal with) grief, or get angry about the blatant disrespect of the 5 days compassionate leave policy (five days ffs). Nor is it to offer advice or a positive message, if you’re grieving, I can’t ease the pain. But I can hope that someone reads this, and finds even a small part of their experience reflected back. And that they might find comfort in that. I found a description of grief online last year, written by an anonymous writer. He likened the experience to that of a shipwreck with everlasting waves. It resonated with me strongly, you can read it here.

I have learnt so much in these two years. It has been the weirdest, saddest, most destructive, most progressive, ugly, beautiful journey. I have wanted to heal the world, I have wanted to end it. I have been lost, and found. And lost again, and found again.

I understand love greater. And my own strength.

Perhaps it isn’t so hard to write about grief after all. Perhaps.


(Dad writing. Corbieres, France, 2012)

*I would just like to acknowledge those people who held me. Brought me food. Sent care packages, sent flowers, sent emails, sent texts. Called. Kept calling. Still call. Took me on walks. Made me join the gym. Made me go to the gym. Danced with me. Cried with me. Listened. Thank you.