A traumatic time for families
Like the impact of younger onset dementia on children, it is as traumatic for families. After sharing my diagnosis with family and friends, there were few friends who found the courage to face the disease with us. But parents, partners and children have no choice, and the impact on them emotionally, and as carers for us is magnified by the fact we lose the support of many of our friends.
Our relationships with them change, as we change; there is very little they can do other than modify their own behaviour to fit in with the changes brought on by the symptoms of dementia.
Defined by our symptoms
The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning ‘madness’; no wonder we struggle against the myths! And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties. It is a tragedy that so many just see our deficits. The impact of this also deeply affects our partners and elderly parents.
The impact on carers
Shirley Lockeridge and Jane Simpson [i] found in a study of six carers: ‘Four major themes were evident: (1) ‘this is not happening’: the use of denial as a coping strategy; (2) ‘let’s not have any more of this demeaning [treatment]’: stigma in young onset dementia; (3) ‘I’ve had to fight every inch’: struggling to maintain control of events and emotions; (4) ‘what will become of me?’: carers’ adaptation to loss.’ Studies clearly illustrate the potentially negative impact of young onset dementia on our partner’s emotional relationship with the person with dementia and the profoundly disturbing emotions younger carers may experience as the relationship changes. The negative impact, and the physical and emotional burden on our children, our partner and our older parents, as care givers, becomes significant, and carer burden is a major issue in families.
My parents sadness at my diagnosis
In 2009 my mother was I interviewed for a story in Link disability magazine and whilst this was very sad to read, it was insightful. My parents who live in the country about a six hour drive from where I live, where there is very little support for them, have struggled accepting their daughter has dementia. It has been very hard for them to consider I could be looking for a nursing home for myself, rather than for them.
In the interview, Mum said: 'I was horrified and angry when my daughter told me she had dementia. It was an anger that I had never felt before.'
She then said: 'There was nothing I could do. I felt so helpless. Then the anger subsided and I was left with a feeling of deep, deep sadness. I try to enjoy shared times together, remembering our bright energetic little girl. I cannot contemplate what lies ahead for her.'
I'm not sure how my father feels, as it is not something he has ever talked to me about. I do know he was uncomfortable about me being so open and public about the diagnosis, coming from the generation who generally don't share personal things, sometimes not even with close family. I have never heard him say the word dementia, and suspect the stigma of it upsets him greatly, especially realising his daughter has been diagnosed with it.
My husband's fears for the future
My husband lives with an increasing fear and anxiety of what is ahead. Our intimacy and sex life has changed; our socialising has decreased as I now struggle with groups and large crowds. Going to the movies is futile as I can no longer keep up with a fast moving story, no longer cope with a scary one, and no longer watch my favourite European movies as by the time I’ve read the subtitles, the screen has moved on. My husband lives with an ever deepening sorrow, as he watches from the sidelines, trying to support me without ‘minimising’ me. He tries to hide or block out his grief as we strive to live the best way we can, but I can see the intense sadness in his eyes, feel it in his hugs, see it in the way he sometimes sits and holds his head in his hands or stares at me when he thinks I am not looking.
My husband wrote in an email between us - ‘I know I am losing you and am afraid of what the future holds.’
A couple of years ago I gave my husband the nickname ‘BUB’ meaning Back up Brain and we find this terminology far easier to live with than carer. We think of a back up brain as being the same as the hard drive in a computer. He said recently, it empowers him to be by my side and with me, rather than to ‘care’ for me, a very subtle but significant difference. Our philosophy is to try and live in the now and be happy and enjoy every single moment, to hang onto our love rather than waste our time now being sad and fretful. There will be plenty of time for that later on!
[i] Lockeridge S. & Simpson J. (2013), The experience of caring for a partner with young onset dementia: How younger carers cope, Dementia, 12: 635, originally published online 15 May 2012.