A daughter’s experience; living with dementia

Written by Laura Hodgson

Laura Hodgson

Laura Hodgson

How can I describe who my mother is? To say succinctly who she is, who she was, who loves her, who she loves and what she values is a heart-wrenching exercise and feels strangely intrusive. My mother can no longer write nor can she easily articulate her thoughts and needs and certainly cannot share memories. I must do that for her. When my mother finally had to move out of the home she had shared with my father for over forty years into her new home, a residential care home for people with dementia, I tried to say who she was in preparation for her move. When the decision to move someone finally comes it is out of necessity and there is very little time to prepare.

My mum was moved five years after her diagnosis and after my dad had heroically looked after her with the support of carers, family and friends. Finally however her condition reached the stage where she needed professional nursing care. The Friday before she moved I wrote a simple profile of my mother. This was something which I instinctively felt I needed to do to make the transition easier. Without insight into who my mum is I worried that she would be a stranger in her new home. What does she like? Above all, chocolate, but also strong coffee, weaker tea with no sugar. Cats and small children. Wine with her meal. Who are her friends? There have been many over the years but Ros, Michelle, Al, John and David would all be visiting her. What does she enjoy? Gardening and cooking and being with her husband. What will annoy her? Intrusion, over-familiarity, aggression, a lack of respect for her personal space. What does she value? Intelligence, manners and humour. Did she have a sense of humour? Yes, and it is still there if you take the time to find it. All these things I tried to capture in her profile. Briefly and simply it gave an insight into a very fragile woman suffering with advanced dementia. Of course a profile cannot prevent her irritability or her completely uncharacteristic, but now frequent, temper tantrums born out of frustration with the hideous illness that she still tries to fight, but her profile does go some way to explain what might cheer her up, calm her down, engage her or relieve her distress.

A profile is not a panacea but it will provide the foundations for the new relationships which my mum will need with her carers for a more fulfilling future life. It will provide insight into who they are cleaning, feeding and talking to but most importantly it brings greater dignity to my mum and contributes towards a much more meaningful and dignified life where both these things are too often scarce.

You can learn how to create your own one-page profile and read more stories of people that have used them from birth to end of life at http://onepageprofiles.wordpress.com

Dignity and respect?

Written by Sally Percival

Sally Percival

Sally Percival

My mum has always been very independent. A few years ago she took a fall at home whilst moving a piece of furniture and broke her leg. It wasn’t diagnosed for a year and in that time she had countless Xrays and hospital visits as her circulation started to fail and her mobility suffered more and more. By the time the doctors picked up the break she was almost unable to walk and the hospital insisted that she was discharged to a care home where she could receive additional support.  By this time it wasn’t just her physical health that was deteriorating but she was acting differently too. I know now that these were the early stages of dementia but at the time it just seemed that mum was becoming a bit more forgetful and seemed less bothered about what she said and who could hear her! She would comment loudly about what people were wearing and how they looked – well within earshot and apparently without concern that they might be offended. I knew something was very wrong when one day I visited to find her complaining about not being able to get the mobile phone to work only to realise later that it was the TV remote control she was trying to speak into. It was obvious then that she needed more support but being discharged to a care home did not sit well with either of us.

In fact, mum hated it and I hated seeing her there. I know that there are some very good care homes but this was certainly not one of them. The staff seemed totally disinterested in her needs or in treating her with dignity and respect – they would leave her alone in bed for hours at a time and had taken to hiding her emergency buzzer so she couldn’t call them; “she is a very naughty girl” they told me “always buzzing for no reason”. I’d regularly visit to find they had put her to bed for the night at 4pm in the afternoon and they seemed to do the same with the other people living there too – out of sight out of mind.

I know about and have successfully used one-page profiles with my son for years. He has a diagnosis of autism and using his profiles has helped immensely (in particular in school and to aid his transition) to direct his own support and ensure that people recognise and appreciate his special talents and gifts rather than focusing on his condition. When I introduced the staff team at mums care home to her one-page profile they were totally disinterested. I explained that it detailed what was important to her and how best they could support her in an easy to read way – perfect when there are lots of people involved in care. Instead of embracing the tool and using it to support mum well, they would hide it away in her draw and continue along the routines that suited them.  In truth I think they thought I was a bit of a hippy and didn’t consider how using a one-page profile could benefit them or my mum. Every visit I would take it out of the draw in mum’s room and display it prominently and every time I left they would put it away again.

It came to a head when I arrived one afternoon to find her alone in bed and choking on her own vomit. She was on her back and couldn’t adjust herself to clear her airways. The emergency buzzer was nowhere to be seen; hidden away from my mum so they didn’t have to respond to her needs. It was terrifying . When I finally was able to stop my mum from choking and settle her down I went to find help. It took me 20 minutes to get someone to assist me. I have never been so enraged in my entire life.  I called the social worker and told her I wanted to move her immediately and arrange for a personal care plan and budget for my mum. The social worker told me that individual budgets are not for older people so I made a complaint and got a new social worker. It wasn’t easy but we fought for my mum until we got her the support she so desperately needed.

Mum is now back at home. She pays for her own personal assistants and care agency with her individual budget and is back in the driving seat where she belongs. She had lost 5 stone in the care home but after being home for just a few months she put the weight back on and her health and happiness improved dramatically.

Mums one-page profile is now used by her staff team and we update it whenever we need to communicate something new. It even helped us to  employ the right people because  we had already identified the things that were most important to my mum and how best to support her which meant we could match the right people to the role.

There are many reasons that the care home was not suitable for my mum but I believe that how they reacted to her one-page profile was a clear indication that they had little interest in treating her as an individual, celebrating who she was and supporting her to do the things that were important to her. My mum is happy and well again and loving being back at home. She may be older and more frail and she may be forgetful and even confused at times but  she is still an independent strong woman and she is still my mum and deserves to live her life the way she chooses and direct her own support.

Tips for using a one-page profile well with people with dementia:

1)      Involve the person, family and friends when creating the one-page profile. You can learn so much my talking to each other and by combining everyone’s experience. When creating my mums, myself, my sister some friends and my mum sat down together and had good conversations about her life, her passions and what was important to keep her healthy and well as well as happy and in control.

2)      Don’t over complicate your one-page profile, keep it simple and concise.

3)      Always ask the person what colours they like, colours are really powerful, my mum was very specific about the colours that she wanted, it wouldn’t have felt like her profile if it was red or orange.

4)      Don’t forget photos, they are vital, take time to select ones that are meaningful to the person.

You can learn more about one-page profiles, find further examples of their use and get help to create your own by visiting www.onepageprofiles.wordpress.com