MOTHERS AND DAUGHTERS
An article by Maureen, about her mother, Jean
In memory of Jean
Mum died 15 months ago. She was 77.
I first noticed Mum’s ‘forgetfulness’ when she and Dad came to help me settle into my new flat in Edinburgh - she got unusually mixed up with orders for tea and coffee, and Dad looked worried. She was only 68. Mum was a bright intelligent woman who held down responsible positions in finance all her life, a fantastic cook and homemaker, a loving mother and grandmother. She had the driest wit and could be formidable at times too!
My dad, George, was her devoted partner and the love of Mum’s life. He cherished her and cared for her (much more than we knew) until he was taken ill with cancer – we had 5 weeks from his diagnosis to our final goodbye with him, just the week before Christmas 2005.
The next part of the journey was about to begin; it took us through grief, despair, frustration, anger, and loss.
Mum became unable to live on her own, despite a combination of homecare services and family input and after a crisis was admitted to a secure psychiatric ward in the local geriatric hospital. My sister was relieved (she felt Mum was now safe), and I was devastated (I felt that Mum had lost her freedom) – 2 completely different viewpoints, but both valid in the circumstances.
During this journey, people came and went. Some said things like, ‘she’s a poor soul’ (not helpful), ‘it’ll be a blessing when she goes, she’s not your mum anymore’ (extremely unhelpful and hurtful), ‘we don’t go to visit because we prefer to remember her as she was’ (a cop-out) and so on.
Things finally settled and after 9 months we found a suitable Care Home for Mum where they were happy for us to make a big contribution to her care. Mum had a visit from a family member on most days of the week, and her little room soon became a happy, homely place. Sometimes I would just sit beside Mum, holding her hand and maybe looking out at the birds in the garden, other times we would giggle together, tidy out her wardrobe together, walk together, listen to The Three Tenors or Frank Sinatra, or eat home-made scones with jam and drink tea from her own china cups (Mum’s favourite afternoon tea)! In the end, the precious moments seemed to ease the tough ones out.
One day, very recently, I met an amazing woman from my academic role in life (thank you, Fiona) who shared an article in relation to the Human Condition with me which touched my heart. The following is a short excerpt;
‘Our identity is partly shaped by recognition or its absence, often by misrecognition of others and so a person or group of people can suffer real damage, real distortion if the people or society around them mirror back to them a confining or demeaning or contemptible picture of themselves. Non-recognition can inflict harm, can be a form of oppression imprisoning someone in a false, distorted and reduced mode of being’ (Taylor 1994)
I wish I could paste this quotation in every hospital and Care Home from Land’s End to John O’ Groats!!
So in summary; do I wish that things could have been different for Mum and our family? You bet! Would I go through those years with Mum again if I had the chance? In a heartbeat.
Taylor C. (1994), ‘The politics of recognition’, in A Gutman (ed.),Multiculturalism: Examining the Politics of Recognition, Princeton, NJ: Princeton University Press
Hugs and Cusses
Della is a carer at a distance for her mum who’s had dementia for 6 years.
Mum lives several hundred miles away and with the aid of supportive neighbours and one quick check visit each day from an agency, she manages to maintain her independence. Her neighbours pop in daily, help with her shopping and cook her hot meals a few times a week; I don’t know what we’d do without them, but am becoming increasingly concerned that they’re taking on far too much and that mum really should be having either more daily visits from social care agencies, or we should be looking at alternative options. Mum has refused to sell her home and to move closer to me.
Mum’s neighbours go on holiday 4 or 5 times a year and that’s when I go to stay with her. Over the past year, maintaining a long distance relationship has become more tricky; mum struggles to communicate by phone and has also been plagued with sales calls (despite being registered with the TPS) to the point where she dreads answering her phone. Often when I call her it’s clear she doesn’t know who I am, or thinks I’m a cold caller and it’s becoming very difficult to have a meaningful conversation with her. I have talked to her neighbours and friends, and we’re going to change her phone number – which will be a temporary solution.
I’ve started sending her little postcards and small presents as another way of engaging but she forgets that I’ve sent her something and then accuses me of lying when I ask her if the flowers or chocolates or card have arrived.
My visit early in the New Year was very challenging and there were several times when I had to walk away, to leave the room and put some space between us. I’m finding it difficult to cope with the continual repetition of questions Mum asks me or to listen to the same anecdote over and over again. Sometimes we have the same conversation 20 times over – within the course of an hour. At other times she can be very hurtful in what she says, almost abusive. She’s also started being quite manipulative in order to get what she wants, and she’s becoming a little disinhibited which means I’m always tense when we go out in case she does or says something which upsets other people. I tell myself this is all due to the dementia and try not to take it personally but to be honest I really struggle on the difficult days.
We can go from mum shouting and cursing at me, to having a loving cuddle within the space of a few minutes, which is really difficult to get used to. Of course mum’s short term memory is very poor which means she almost immediately forgets an argument whereas I have to work very hard to put it behind me and not to feel resentful or angry when I’m still smarting at the comments she’s made.
Mum’s become a creature of habit; she visits the same coffee shop and has the same pastry each time she goes there. She watches only 2 channels on her TV – a mind-numbing diet of reality TV and quiz shows. When I’m visiting, she still insists on watching and wants me to “enjoy it too”.
I realised during my visit that little things are slipping – she forgets to brush her teeth, dirty clothes are put back into the wardrobe, and there’s never any food in the fridge.
The worst thing is that I’ve begun to doubt myself. I always thought I was a kind and caring person, but there are times when I really dislike my mother and resent having to give up all my spare time to take care of her. I’m her only child so I can’t share the responsibility with anyone else – apart from her lovely neighbours who could at any point say that they can’t continue to support her.
I discovered Twitter when I came back from my last visit and a friend recommended that it may be a place to find other carers who’re in the same position. It’s all still very new to me but it’s good to know I’m not the only one who struggles to care from far away and who still needs to come to terms with the changing circumstances and my new responsibilities. I know I need to work hard to understand how best to cope with Mum – and I certainly need to learn not to take things to personally. The website has been very useful in helping me to understand how to communicate with mum and how to deal with some of the difficult situations.
At the end of the day, Mum’s still mum – and a cuddle and a laugh with her makes up for the difficult times.
There is a page on Distance Caring which may be useful if you're in the same situation as Della