17
May 2017
Dementia: A Personal Account
Looking back, I remember the time 8 years ago when I realised that something was amiss with Mum, at first I wasn’t sure if it was just stress as Dad had been diagnosed with a terminal illness and she really didn’t cope well with that. They had been married almost 47 years and had spent as much time together as possible, completely inseparable in their retirement. Therefore, Dad being in hospital for extended periods of time brought things to light that he had been covering up, memory problems, the inability to deal with situations and such, it became clear over time that Mum needed more help than we had previously thought, however any mention of seeking help was met with resistance. I believe that this was largely down to the stigma of dementia, there was and sadly still in a degree of fear that comes along with the suspicion of or eventual diagnosis of dementia. This is something I have heard echoed many times when speaking to the families and friends of those with dementia.
As time passed Mum deteriorated and eventually was diagnosed with vascular dementia, during this time Mum spent more and more time at my home with my family and myself and we got on with things for a while. However, this was clearly taking its toll on us all as our children were young at the time, 8 and 5 when Dad passed away, and whilst trying to juggle our jobs and care for our children looking after Mum became harder, particularly when she would fly into a rage for no apparent reason or I would return home from collecting the children from school to discover her sitting on the garden bench in the rain as she was scared by something she thought she saw in the house. We now know that this was most likely due to her being confused which lead to fear, but explaining that to the children was very difficult. I felt torn between being a good daughter and a good mother, Mum would have days when she was almost like herself, sadly other days she was someone I didn’t recognise.
In time, we agreed that Mum would go for respite care at a local care home and whilst I felt as though I had let Mum down by not having her with us I also felt a degree of relief that I could offer my family more of my attention and let my children simply be children. I have since had conversations with people who felt the same sense of sadness and that they may not have done enough when a parent went into care but seeing the difference in Mum at the care home where she was surrounded by people rather than being alone for extended periods of time eased my distress. While it wasn’t a miracle cure she was in herself a happier person, much of her anxiety was relieved by having someone with her who could calm any fears before they took hold. Shortly after, she moved into permanent residential care and for quite some time was far happier than she had been over the previous 12 months.
During this time we would collect her on a weekend and take her out for a walk or for coffee and cake, she also went on trips with the Home, canal boat days, picnics etc, it became apparent that agreeing to her going into full time care was a good decision. It also impacted on our life at home and rather than the children being, to a degree, wary and sometimes even a little fearful of their previously loving grandmother they looked forward to us visiting her after school. Sadly, during some of our outings we were met with people who didn’t realise that Mum had dementia and on occasions we had to deal with people pointing, staring and openly laughing at her when she got confused or upset by something. Whilst there are no visible symptoms of dementia it saddened me that we live in a society that is sometimes unwilling to accept people’s differences and take a little time to consider how their actions affect those around them. That is one of the main reasons I chose to become a Dementia Champion, the Dementia Friends initiative is a social action movement to spread the message that you can live well with dementia and that your actions, no matter how big or small can have a huge impact on the lives of those living with dementia, their family, friends and carers. Sometimes a little compassion and understanding can turn a very difficult day into a much happier day.
If you have someone in your life who is living with dementia, remember on the days when things seem to be too much that you are not alone, and if you know someone who has a family member or friend with dementia don’t be afraid to offer them some support, be it a chat over a coffee, some words of encouragement or someone to let out their feelings to, dementia is not something to be hidden away or not spoken about, there should be no stigma, dementia is an illness that affects people at random and all we can do is stand together.
I am Sue Preece, this is my story and this is why I am a Dementia Champion.
#uniteagainstdementia
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