Dear Manager,

 

Today a physiotherapist spent fifteen minutes at the care home with my mum. Then your nurse  called me to inform me of his diagnosis. This turns out to be that my mum, 'lacks motivation.'

 

At the weekend you informed me that my mum had been, 'difficult' because she would not eat.

 

You asked me today if my mum has ever had, 'a stubborn streak.'

 

You say you've called the doctor to discuss further medicating her 'low mood.'

 

Let me tell you about my mum.

 

She is quiet, cheerful, considerate and hard working. She's clean and tidy, supportive, unassuming, caring, modest and delightful. She's devoted to her family, adored by her six grandchildren and a fantastic cook and loves gardening. She is brave and determined, yet quite shy. My mum is the loveliest, the kindest, most giving person I know and I'm not just saying that because she's my mum, but because it is true.

 

Before her serious stroke she was independent. She could still drive and would go down South on her own in her seventies,  when I know people half her age who won't even go one junction on a motorway. She loved to read and be busy and get out and about and had a great sense of humour and she gave to charity and did everything a good person should do.  All her life she has behaved as society expected and did everything she could for her family and friends. Nobody has been less bother to other people her entire life, nobody has been less 'difficult' or 'stubborn', nobody more pleasant. More to the point, nobody has wanted to be less of a bother than my mum. Her worst nightmare is this horrible dependency she finds herself in now. Paralysed down her left side, unable to think clearly, sometimes unable to speak.  Whether or not she's fully aware of what is going on, this is what she was dreading,  ending up like this, living a kind of half-life horror story, the type of which horror films like Saw or Zombie Apocalypse don't even touch on.

 

In the last six months she's lost her mobility, eighty percent of her right brain function, her independence, her privacy and her home. But she doesn't complain.

 

Since being admitted to hospital and been labelled as doubly incontinent (though I have my doubts and keep expressing them and keep being ignored) and has had no choice but to go to the toilet in adult nappies. Humiliating or what? This smart, clean, modest and private woman. My poor mum.  But she doesn't complain.

 

She has to put up with being pawed and stroked like someone's pet dog, and patronised by people she's only just met in homes and hospitals. But she doesn't complain.

 

She isn't deaf and loud noise disturbs her, but frequently she now gets people talking to her in a loud voice, putting their faces inches from hers,  because of her inability to gather her thoughts. Imagine the frustration and stress for this previously articulate person.

 

She has to sit and sit and sit and sit and lie and sit and lie and sit and lie and wait and wait and wait and wait and wait and wait and wait and wait and wait and wait some more. Then she  has to lie and lie and lie and sit and sit and sit and sit and sit some more. Then wait and wait, wait ,wait, wait, wait and wait in places that are not her beloved home. But she's only cried twice.

 

She is lifted and cleaned and handled by people she hardly knows, who may, or may not, forget 'little things' like brushing her teeth.  She has no way of changing out of the less than clean clothes someone may or may not have put her in the morning. She cannot wipe her face when there is food on it, nor control a cup of tea properly. When she is thirsty she has to wait. When she needs her pads need changing she has to wait. When she is hungry or tired she has to wait. She cannot move to a comfier position . She listens to people talk about how they are looking forward to  a day off work, a day away from caring for her, when she gets no day off from all this misery and injustice.  But still, I have not heard her complain once.

 

Is it any wonder she has a 'low mood? Can it really be seen as 'difficult' if she doesn't lift a spoon or she 'lacks motivation?'  This makes me so angry and upset to hear these terms . It's so judgemental and unfair. Her reactions are NORMAL in the face of what she is experiencing, not 'difficult'. I'd like to see if some of the people labelling her in this way could confront the situation she has found herself in, with even half of the dignity, stoicism and patience  that she has shown.

 

And as for motivation, even fit and able people 'lack motivation' to do things, They sit in front of the TV when they could be out running. They stuff themselves with food when they could diet. They don't make the most of their able bodies and alert minds, instead choosing to gawp at X Factor on TV and mindlessly watch soap operas, when they could be experiencing some of the wonders of life. They throw alcohol down their throats or inject themselves with substances to get a high, not realising that one day they could be forced  to take chemical medicines just to stay stable like my mum, a woman who never wanted to take an aspirin.

 

Now my mum is at the mercy of a system that medicates low mood. Her only crime is not to be cheerful or cooperative enough. Is it not enough that she hardly ever asks for help? Is it not enough that she doesn't complain? Now, because she doesn't wake up singing  Zip-a-dee-doo-dah and launch her one mobile arm and leg into a series of physical movements , she's labelled,  'unmotivated' Let's see how motivated the physiotherapist would be in this situation.

 

And the frustration that I cannot care for her myself is unbearable.  I listen to others say they'd never put their mum in a home, while I think about how mum needs moving every two hours, day and night, by two people. I think about my  three teenage children who are doing important exams,  who have had to watch the transformation and deterioration of their grandma. I think about what happens if she has another stroke and this all gets even worse.

 

And I have to give instructions over and over and over and over again. To every different care staff member and nurse. They write it in a book, then say they know about this that or the other, then I have to tell them again and again and they look at me as if somehow I'm responsible for them not knowing what they've already been told ten times. And this is a good care home, heaven help those in the bad ones.

 

Perhaps I've only just accepted that she's ill.  She's so ill. And if her illness means she doesn't do every single thing the staff want at the appropriate time, I thought there would be more understanding than for her to be found at fault, to be blamed for having the wrong personality traits. And dammit, if mum doesn't want to chat or to feed herself sometimes, is it any surprise?

 

And I visit every day because I refuse to give up on her. I phone various departments: Orthotics, GP's,  Social Services, Help the Aged, Consultants, Hospitals, The Stroke Association, Physiotherapists, Speech and Language Therapists, Safeguarding. I am  always seeking help, understanding and advice. I ask questions about her care because I care.  I check her care. Then, I apologies regularly for doing this, aware that if I step out of line, or seem to interfering, my mum could be the one to suffer. I walk a tightrope of diplomacy, inwardly angry , despairing or depressed, yet trying to be outwardly rational and reasonable. Every day I wish I could bring mum home. Every day I wonder if this is the day I'll get, 'the phone call.'

 

So, I will not go down the route of blaming my mum and criticising her behaviour. I won't collude in any assumptions about her, to justify any difficulties with or lack of care . I simply will not do it. My mum deserves better. The descriptions I'm hearing about her now simply break my heart and I will not stand for it. I will defend her as if she were my child and I the mother. She may have had to enter a home but this doesn't mean my responsibilities end there. I'm going to look out for her because to me she is still the mum I knew. My mum is not stubborn, or difficult or lacking motivation, she is disabled and ill.

 

And I know that somewhere under those blank expressions and closed eyes and that right hand that grips mine like she never wants to let go, I know that somewhere is the old mum. And that is and will always be the mum that I see.