I was recently asked to speak to a large group of second-year nursing undergraduates. They were from diverse areas of nursing including mental health, paediatrics and general medical. They had gathered for events to raise awareness of dementia. I had been asked to speak to them in my role as a full-time carer.
I looked around the lecture theatre at my audience, who comprised mostly young people. After a brief moment wondering whether I would be able to hold their attention, I started talking.
After I had finished speaking, I could see some of the students were in tears. I know I’ve said it before, but many people have a dementia story. The disease touches so many lives.
Hopefully, my presentation helped the students to understand how their own experiences can positively inform their behaviour towards, and treatment of, people with dementia.
Among the questions I was asked was, “How do I cope with the constant pressure of being a carer?” I told students one of my strategies is to take antidepressants. I could see some shocked faces.
I explained to them it was a rational response to an irrational and, sometimes stressful, situation. I have spent some time discussing my situation with my GP, in whom I have confidence and with whom I can talk freely and honestly.
She does not judge, but helps me to reach a decision that is right for me.
In the end it came down to the fact the drugs would help me to achieve what Tony and I both want: that he will be able to continue to live at home, at least for longer.
As the disease progresses, I now understand more clearly, and am more willing to accept this may not always be the case.
I find coping with the demands of Tony’s downward spiral more and more difficult. In the past month or so, the dementia has really taken a grip and he is clearly deteriorating.
Aricept, the drug which helped in the early stages, is no longer having an effect. He now takes Memantine.
When it was prescribed I was told by the consultant psychiatrist there was no guarantee it would be helpful as it does not work for all dementia sufferers.
Fortunately, and I touch wood as I write this, it appears to be having a positive effect. At the moment, Tony is much less verbally aggressive and agitated.
I can quite understand people may be shocked by my decision to take the drugs. Like dementia, admitting a need for antidepressants is also shrouded in shame and embarrassment.
However, the day-to-day reality of living with someone with dementia has a wearying impact on a sole, full-time carer. When there is the opportunity for an extended and locally based family group to share the responsibilities, the impact, although tough, is obviously not as great.
For most people, our work defines us. It is one of the ways we introduce ourselves to new people. Now I am no longer in full-time, paid employment, I struggle to maintain a sense of self.
The antidepressants also help me to cope with the panic that sometimes sets in if I think too much about all of that. They help me to retain a level of personal equilibrium in the face of a life and marriage increasingly bounded by the needs and demands of dementia.
Dose of the miseries
From as far back as I can remember, I have occasionally suffered from a dose of the miseries. They last about three days, during which the best thing I can do is keep my head down, not make any important decisions and try not to be the world's most irritable person. They go as suddenly as they descend.
Of themselves, the glooms are not worthy of anything more than patience and sympathy, but combined with everything else going on, it can now be a tough few days.
Tony is no longer capable of understanding or supporting me so the low days are that much harder to get through. That’s another reason the chemical crutch of antidepressants is useful.
Tony and I are now in a much better place than we have been for some time. Tony is more able to enjoy company and to cope with social expectations.
Number two son and his partner, who live in Paris and are getting married in August, came to visit us recently. They wanted to discuss wedding plans.
I am charged with organising and arranging the wedding flowers. Tony’s contribution is he will wear a suit and not make too much fuss.
Of course, he will forget all about the promise, but at least he showed willing when asked.
Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer’s disease.
