When I started writing this blog last week my father was in the final stages of his journey with dementia. Now, after the battle for him and those around him he has passed away, it feels like a good time to stop and reflect back and to share the experience with anyone else who is in this position. This is also a perfect example of those unavoidable stresses that I talk about in my workshops; stress that we cannot cure, and we cannot avoid, one that we must find ways to live with.
Parental dementia is one of the most difficult things I have had to deal with in my life. My mother had suffered with dementia for 13 years before she died and for the past 6 years, my father had been on a downward spiral.
The emotional response to caring for another person, or even being around loved ones with dementia is a complex one. In my own case, there were family rifts in the management of my father’s care, a feeling of uncertainty as to whether I was doing right by him, uncertainty due to non-co-operation from him and the feeling of guilt that I couldn’t keep him safe or happy.
As much as I loved my father, he had a challenging personality and dementia made it so much worse. He burnt his house down and insisted on returning to the rebuilt house against our wishes. There were family conflicts over his care, desperate attempts to get the mental health support services to step in, exhausting confrontations with my father as we did our best to support him and the inevitable regular crises on return to his own home for another 2 years. Associated activities such as battling the A303 traffic jams to visit him or dealing with the consequences of his regular rejection of daily carer help and behaviour towards others, hurtful rejection of me as well, as well as constant worrying, they all elevated my stress levels beyond anything I had experienced before. There were moments of warmth, humour and enjoying activities together, but these aren’t the ones we struggle with.
With my Relaxation for Living and More training, I think I was more equipped than most to manage the associated stress but even so it was extremely difficult and my sympathy goes out to anyone in the same situation.
Obviously, you do what you can to support the person and look after them at whatever level you are able to do so which makes you feel better. This can include helping them to access something they enjoy, or even sharing a cup of tea and a chat. It doesn’t have to be you that interacts with them all the time either. In fact, it is good for them and for you to have a non-primary carer involved to help them lead a more normal and independent life.
But the biggest thing you can do for everyone involved is to make sure you focus on self-care, including accepting the fact that you are doing as much as you can; you can’t control everything. It is critical that you focus on taking breaks to allow you to dwell in your own thinking space, completely detached from your caring situation. I like to call this your pottering space and I found it essential to my ability to cope with the demands of looking after my father.
Self-pampering is also something that is highly effective. What kind of activities do you love and partake in to remove you entirely from a situation? Massage is one of the best relaxation techniques for me and I found I used massage more when I had higher levels of stress because of situations relating to my father’s dementia.
Also, reaching out to others can give you a huge sense of relief. Caring can be an isolating activity and whether it is a family member or a part-time carer who can give you support with looking after the person, any amount of pottering time will go a long way to restoring your mental energy. Someone other than you having a cup of tea or a chat with the person with dementia can relieve the pressure on you significantly.
There are also a number of support organisations and charities available for those who are experiencing dementia through a loved one. Talking to those with expertise in dementia can also help enormously. For example, they helped me to see how arguing or correcting my father was of no value, it just made it worse. When I stopped arguing it greatly improved our relationship and his happiness. People with dementia may not remember memories but they remember emotions; good and bad. Listed below are a number of organisations you can contact.
I hope you’ve found this useful. Like I say to my clients there are some sources of stress in life that are inescapable and cannot be easily reduced but there are many ways we can fortify ourselves to ensure we can handle them with less pain.
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Some reference sites: