On national television recently I heard a woman who had been retrenched from her job make the comment I have lost the sense of who I am. This was very relevant to me as having to give up my paid employment, because of the symptoms of dementia, was very difficult. No-one ever asked me how it felt or if I had lost the sense of who I was, no-one ever asked me about the human cost of this event. Mostly, people said I was lucky to be retiring early! For many our work defines us, just as many years ago women who stayed at home and worked full-time as mothers and house keepers, felt empty when their children all left home, as if they had lost the sense of who they were. Wherever you go, if you meet new people, they almost always ask What do you do? If you only do dementia, then what do you tell them, and what value is your life perceived to have I wonder. This is probably why I speak out and blog, not just to create my memory bank, but to make sense of dementia, and to make sure my life feels valued, so that it feels as if I am doing something that is still meaningful and worthwhile. It is much more productive than sitting home alone facing the daily onslaught of the symptoms of dementia. I’m not sure it was the right thing to have given up work, to have taken the advice to disengage from my normal life, so quickly. The term career seems to carry an elitist connotation, and not having a career therefore is likely to disempower people. Much of the research says that working functions to fulfill three basic human needs: 1) the need for survival and power – in this sense power refers to the exchange of work for goods or services, 2) the need for connectedness – human beings are inherently social creatures, and 3) the need for self-determination – that is, deciding on our daily lives and futures. Working for the purpose of increased wealth is not the point I am trying to make, as research is showing that although there is increased prosperity in countries like the USA and Australia, the sense of happiness has not increased, and it is things such as meaningful engagement and social connectedness that makes people happy. Volunteering is one way of retaining the sense of having a meaningful career, and for people living with dementia, is a very positive way of staying connected and engaged.
The impact of not being able to work following a diagnosis of dementia may not have been considered in the past, as young people were not being diagnosed as often, but as this changes, the impact does need to be considered. For my family, it meant we went from a two income to a one income family, but with health and care costs that more than tripled. There is no compensation for this, as even a carer’s allowance is means tested, and the paltry means tested amount offered to carers per week does not come near to covering the additional financial burden being shouldered by that person. And this person is left to work as the lone supporter of his or her family, as well as become a carer, and then slowly becomes less able to put in the hours of a full-time job, as the burden of care increases. Perhaps if people with younger onset dementia were encouraged to stay at work for longer, and offered the same assistance to overcome the disAbilities of dementia or other compensations given like other disabled groups, not only would the burden placed on their partner and families be reduced, but the person with dementia would surely remain psychologically happier. They would also probably remain more physically well as the neuro plasticity exercises required to continue to function well in a career environment would be done every day, without having to think about doing them. It might also help the people with dementia who find the grief and loss too hard to stay positive, and the effort of learning or wanting to become engaged in other ways, by allowing them to find ways to overcome the changes brought on by dementia, rather than ignore or feel overwhelmed by them. Most importantly, the person with dementia would not lose the sense of who they are so easily or quickly, but merely modifying their current lives. They [we] would stay engaged, empowered, socially connected, be more financially secure, and stay in a position to continue to determine the direction of their [our] lives.
That is very relevant, I’m sure it is a major cause of much of the depression that comes along with alzheimers. Most people love to feel needed, valuable, useful, as though they are doing something good for someone.
My mum was a nurse, and worked in aged care. When she got her alzheimers diagnosis, her nursing licence was taken away from her within a few weeks of her diagnosis. She didn’t hear boo from the hosptial system that she worked for for over 30 years. No retirement party, no gold watch, no “thanks for your service”. Nothing, just took away her licence and silence.
They could have easily offered her some other role in the short staffed aged care facility she worked at, even if she wasn’t able to handle medications etc. Really sad, I can’t even imagine how she must have felt, when just dumped like a hot potato by them, then to only have to fight and struggle for 8-9 months, drowning in paperowrk, in order to get herself a health care card to help reduce some of her medical expenses. Appalling treatment from the hosptial and aged care places that she was working for at the time.
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so true, and such a sad truth about the reality of dementia and the stigma it obviously still endures… no-one from my last place of emplpoyemnt has contacted me since I left either, and no wonderful farewell party like I was given every other time I left a job…
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you are very brave and yes having ‘paid’ employment does empower one to feel important, but sometimes employment is not the be all and end all. There are times in everyone’s lives that one can feel lost in a system, trapped by debt and bullied into staying. It is like “i’m just an at home mother” gosh what a job that is. Unfortunately your Dementia is a full time job, keeping yourself active, keeping your mind working and sharing and blogging and and and. you are defined by being you and you have taught me that, the cover and the book are all different so we need to read it to pass judgement. I am not in your shoes and I do not covert them, I want to share them, tread next to you and help where I can, more people should do this
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yes, I agree with all you have said, except I now realise it is different when you can’t make the choice to work – or not to work. I do feel now though that I am in the swing of not doing paid work, and enjoy it, as well as my new role as advocate and activist! thanks as always for your support x
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Just thought I would write a little about the reaction of ones colleagues on departure.
I was made redundant 3 times, and each was managed differently, and the feeling within me and reaction of others was very different.
In my first, along with several other I was told I would be reallocated to other duties or transferred to another Gov’t dept. It took months. Those who were remaining just got on with their job, as if I wasn’t there. So although still present and in a middle mgt position, I was largely skirted around.
My second, a whole dept was told there would be redundancies, and kept this way for about 9 months. Everyone went inward. Communication was difficult, productivity hit the floor, motivation was frenzied at some times, and zero at others. No one was trusted. Mine was one of the safe posotions, but I was the first to be summonsed, thinking I was getting the hit list, to find I was the only one for that round! The 2 weeks that followed were very lonely.
The third, I was quite senior by then, I saw the symptoms, briefed my team about my expectations, asked the MD direct if it was appropriate for my team to draw up the depts own redundacny plan, which we did. The process was quick and clean. But the 2-3 weeks of waiting for the administration process to be finalised, resulted in the same loneliness of the first two, albeit with greater sensibility from the remaining staff.
Once they know you are going, it seems that human nature shifts to self preservation, ie, I have to learn to work without you, and best to start right now! I don’t think it was ever done with malice. But the loneliness and lack of appreciation was very hurtfull everytime!
Paul
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Thanks Paul, Thank you for sharing this painful part of your own journey. Your sense of loneliness is only heightened by other’s self preservation, which as you say was probably not done with malice. Painful though, as it is being told to give up work for medical reasons. The difference here could be that most people in this situation (with dementia or other terminal illlness) will probably never get the opportunity to be employed again, which in my opinion makes volunteering or other meaningful engagement even more important. Cheers.
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I can’t really imagine how it feels to be living your life, but I certainly feel for you in your sense of not really being ‘there’ when you no longer work for payment. I wish you a good life.
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Thanks Carolyn, I still have a very good life, albeit very different to the one pre dementia, and with the occasional clouds of deep sadness, which everyone gets anyway.
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I think your daily blog is essential reading. Very insightful and I actually think that if people’s true value is making a difference for the better this is the career that has been chosen for you.
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