Superstar

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My mum died yesterday. This is a way of remembering how glorious she was.

Most of the people who will read this in an idle moment didn’t know her. She was an ordinary woman from an ordinary family. And yet, she was a superstar.

My mum had a great life. She was an inspiration to many people, from those who borrowed books from the library where she worked, to the school kids she helped with their reading at the local primary school, to those she led on fundraising adventures for Dr Kershaw’s Hospice, to the writers in her writing group, to her friends and her family.

She made everybody welcome. She was the giddy extrovert in a family of introverts. We hung on the coat tails of her love for life.

My mum wasn’t very well for the last 6 years. She had dementia. She struggled with her loss of independence. We struggled with the loss of her.

I would be lying if I said it wasn’t a relief. To see a person change from the joy of the world to a shell imitating the person we once knew has been the hardest thing I’ve had to deal with.

R.I.P Mum.

Does it ever happen…

Does it ever happen that you start out doing one thing, and then are surprised by a reminder of the person your loved one with dementia used to be?

I was hunting out something I wrote back in 1999 for a publication put together by my local library service, celebrating women authors for International Women’s Week. Staff and customers of the libraries were asked to write a short essay about who their favourite woman writer was. My mum and I both had essays chosen for the booklet. I wrote about Margaret Atwood. My mum wrote about Betty Neels. For those unfamiliar with Betty, she was a romantic fiction writer. In the UK she published exclusively with Mills & Boon. In the US her work was published by Harlequin. My mum loved her books. She would hoot with laughter when she read them, and read passages out to me.

This is what mum wrote in her essay:

Betty Neels is the kind of writer to make me think of large, fresh, squashy cream cakes. Imagine a sunny afternoon, washing flapping on the line, a salad in the fridge, fresh strawberries soaking in sugar, a large tub of thick Devon cream ready to spoon out over them. A long cool drink, sun-lounger, sunglasses, phone off the hook, door-bell disconnected. Bikini clad, you sigh and relax as you pick up your shiny new Betty Neels book.

Betty’s heroes are always large, strong, silent, mature. Usually Dutch, usually a doctor, built like the door of a castle, and just as wooden.

Her heroines come in a variety of shapes and sizes. Frequently statuesque, voluptuous even. Sometimes tiny with a sterling character. Occasionally meek and submissive and worn away by life. Eyes may be thickly lashed and downcast in shyness, noses strongly shaped, denoting character, or daintily reposing above a wide mouth. Hair glossy or mousey or a glorious rich cascade. Always English in origin and usually a bit put upon, often in straitened circumstances our heroine can guarantee that she will never go hungry with our Betty at the helm. Taken out for gargantuan meals her healthy appetite is admired and noted with pleasure. Her ability to rustle up a nourishing snack at a moment’s notice can only be a source of inspiration for the less gifted amongst us.

There is always hope for us, after a small tension is introduced into the minuscule plot, that we too will triumph over life’s often rather nasty ways. There will be a wealthy family, a wedding, a large mother-in-law, a granny, a feast beautifully and lovingly described in detail, and the happiest of family circumstances. Food on every page and a happy ending.

What could be more pleasing or escapist?

Good old Betty, I say!

Reading it again is bittersweet. Remembering when mum still had enough concentration to read. Remembering her wicked sense of humour, her cheekiness, her delight in a good turn of phrase.

Guilt

I haven’t wanted to post on here much recently. I’ve been having anxiety and depression struggles of my own. It has been difficult to keep a sense of perspective.

Most of my anxiety comes from my work situation. There have been some big changes already over the past year, and more are in the pipeline. I have been lucky for 21 years to be able to do a job that I love and am good at, at a number of different places. Recently, though, I haven’t been able to enjoy what I do and I haven’t felt that my experience and abilities are valued by my employer.

I’ve reached a stage where I feel sick at the thought of going into work and I’m close to handing in my resignation with no back up plan in place.

This has made it harder to cope with seeing mum week in week out and feel positive. When you are in a bad headspace about yourself, about your worth and your abilities, loving and caring for someone who rarely remembers who you are becomes even harder. Especially when that person is the one who you used to talk to most when you were struggling with life. Especially when you know that she would have loved you unconditionally and told you everything would be okay, and you would believe her.

Added to that, I’ve been having some toxic thoughts. I’ve been visualising the day we took mum to the first care home, how she put a brave face on it and tried to accept that we were doing the right thing. I’ve been visualising how diminished she looked. I’ve been feeling guilty that I wasn’t able to do what she wanted me to do at that point in time, which was quit work and care for her full time so she could stay in her own home. I know logically that it would have destroyed our relationship, that I would have ended up resenting it, but perhaps the knowledge that I’m now so unhappy at work and thinking about quitting is making me feel guilty that I didn’t do it 3 years ago. For mum.

A friend who also had a parent with dementia was recently bereaved. Her parent passed away due to other health issues, but all I could think about was what a release it must be, both for the person with dementia to escape that long slow death of the brain and for the person who had to watch that decline and grieve for a person daily because they were still physically there. I don’t think I felt jealous as such, but I certainly had more than a few moments where I wished my mum’s decline was over.

The brain is a strange thing. I know I’m not a bad person for having these thoughts or for making the choices I have, so where does that voice come from that tells me I’m vile and worthless? And why is it sometimes harder to fight than others?

I’ve been losing myself in reading. I’m currently reading Howard Sounes’s biography of Charles Bukowski. In the foreword he describes how he quit his job as a tabloid hack one day so he could focus on the writing he wanted to do. I don’t actually want to stop doing what I do for a living, though. I just don’t want to work where I work. But there aren’t any jobs doing what I do that don’t involve leaving the north and consequently leaving mum.

It’ll work out. It’ll get better. Mum would have told me that. I miss her.

I only come here to moan

Things have been, thankfully, quiet with Mum. An old friend of hers, who hadn’t seen Mum in over a year, visited a couple of weeks ago and said she could see a lot of improvement in Mum.

Mum is more engaged with the world. She remembers more frequently who we are. She is aware a lot of the time. She laughs, and smiles, and tells us stories from her reality. Sometimes we share the same reality for a brief moment.

Yesterday, though, after enthusiastically eating her midday meal, Mum gave a little burp. “Oh, excuse me,” said my real Mum’s voice, the Mum I miss, not the one occupying her frail body now. It was weird. I miss her so much.

Today came the cause for moaning. I got home from work to two answering machine messages. A social worker from Age UK was ringing me at home, despite knowing that I work full time and prefer to be contacted by mobile phone, to tell me it was okay that I’d missed the review meeting with Mum, she understood if something had happened. A patronising telling off through the guise of forgiveness. Trouble was, I hadn’t been invited to the meeting. Something she acknowledged in her second answering machine message, after she’d spoken to my brother who, she said, had given her some feedback. I can imagine.

Mum is fine. The care home staff are excellent. I understand that they need to be monitored, but I’d rather they were monitored by an organisation that was fit for purpose, instead of the succession of idiots we seem to be lumbered with. If they spent less time on courses that taught them how to sound insincerely sympathetic and more time doing their jobs properly, it would be a start.

Projecting Anger

I have noticed that, even when visits to see Mum are positive and we have a good time, the underlying stress of the situation (the need to be upbeat and find positives when all I can see is my Mum disappearing from view) makes me hyper sensitive to even the mildest of irritations:

•The staff not actually speaking to me about restocking Mum’s toiletries, but leaving a note for me to find by chance on the tv in her room.

•The local council closing the road that is the only access route to the car park for four weeks and apparently blocking access to the road the care home is on, without any clear indication on road closure signs, or the downloadable map that shows the diversion route, that access for residents, employees or visitors will be possible.

•The selfish parking on my street at home where neighbours take up two spaces so that I have to park far enough away from the house for it to niggle.

I am anxious all the time these days. It feels that I am separated from a meltdown by the thinnest of hair’s breadths. Stupid things enrage me. It isn’t healthy.

I’m sure there will be access to the road the care home is on, otherwise the carers won’t be able to get to work and they’d have to evacuate the residents. My anxiety creates a need in me to know for certain, though, to be in possession of the full facts. I can’t bat it away and tell myself to go with the flow and see what happens next time I go across. I don’t know why. My logic isn’t working. I feel enraged by it.

And so today I have left Mum early to make a flying visit to a supermarket to buy toiletries because I don’t know how long the note has been there and I’m anxious about the (admittedly unlikely) possibility of not being able to visit for 4 weeks. I’ve gone back to drop the toiletries off. I’ve not been able to park where I wanted to on my street. I’ve struggled to find an email address to ask the council to confirm that access to Mum’s road will be possible and how. And I’ve sworn like a sailor because I’m so anxious, frustrated and angry.

My Mum used to tell a story of how, when I was 5 and newly at school, I would kick the doorstep when I got home because I’d spent all day “being good” at school. As an adult, I understand better that it wasn’t that I was “being good”, it was that I didn’t feel in control of my day and that I had spent the day with 29 other children and 2 adults so my introversion was feeling offended. I remember the feeling well. It’s pretty similar to what I’m feeling right now.

Maybe I should go and kick the doorstep.

A better visit

Mum was more lucid today. She smiled when I arrived. She didn’t properly know me, but I wasn’t a threat or a total stranger, so she didn’t hide behind closed eyes.

I arrived in time to help her eat lunch. I asked if she was hungry and she said ‘A little bit.’ This means she’ll eat quickly and we’ll and, true to form, she relished every mouthful. I asked if it was good. Mum made the ‘Ooh, if I could tell you how good…’ face. ‘Lovely,’ she said, ‘a joy.’ I asked if it was delicious. ‘Absolutely,’ came the reply.

We talked about her job as a library assistant, and she remembered her first boss, who gave her a job when she left school and didn’t quite have the qualifications to follow her dream to be a nurse. She remembered that he was funny. I asked her about the librarian in charge of the branch library where Mum worked after she married and moved to my Dad’s home town. ‘She was very nice,’ she told me.

Mum was sleepy after her lunch, so I left her napping. As I left, one of the newer residents, M, was the cause of a conference in the corridor. Three staff and her daughter surrounded her, trying to persuade her to go with them to her room. M is quite early stage. She still gets angry and frustrated by her loss of independence. She has periods where she is mobile and can walk from room to room when the strangers in her house become too much for her. Today she was in her wheelchair, though, and frustrated that she had to rely on others to assist her. M wanted to know why she was being asked to do certain things. Why did she have to sit in the wheelchair? Why did she have to take her medication? Nothing the staff said was a good enough explanation. Poor M.

I remember Mum’s anger, when the memory messages still let through knowledge that she had a history of doing things for herself. She was most often angry with whoever was helping her because she truly believed she could do it herself. She has moved beyond that now, with her knowledge of her own past abilities locked away somewhere and the key lost. It is easier for us, and less tiring for her, but it also acts as a reminder that we’re losing her.

Sometimes

Mum has been doing pretty well. We’ve had some good times recently. She’s been chatty, cheeky, fun. She’s eaten well, told me that the food is excellent. She’s had her eyes open, responded to what was going on around her, interacted with me, the staff, the other residents.

Today, though, was one of those days when going to see her is more upsetting than feeling guilty for not visiting enough.

She was in her room, eyes tightly shut, rambling incoherently. I tried my best to engage her, reading out a card from her friend and a postcard from her brother. I made her laugh when I told her the postcard had a bicycle covered in onions on the front, but otherwise she was locked away inside her head.

She looked particularly frail today, her arms not much thicker than the bones beneath the skin, her legs the same.

Once, she said a familiar phrase in a voice that sounded like her old self. It’s those glimpses of who we’ve lost that are the hardest for me to take.