Bob de Marco wrote recently on The Alzheimer’s Reading Room, “I lost track of how many times Dotty said, ‘get out, I don’t need you here, I can take care of myself’. This was particularly hurtful because I had dropped out of the world to take care of Dotty full time. Twenty four hours a day, seven days a week. She had never said anything like this to me before, so I knew it was the Alzheimer’s speaking. It did not matter. It hurt every single time.” As a person with dementia, I can also report it hurts every single time someone says something mean to me, or doubts I have dementia, or blames me for forgetting things, or tells me having dementia is why we can’t be friends the way we used to. Yes, every single time. Sure, I get over it, but the hurt stays inside my heart for ages, making it harder to fight against the symptoms of dementia, harder not to just give up and give in. I read or listen daily about the hurts and hardships caused ‘to a carer’ by the challenges of ‘caring for’ someone they love with dementia. I admire Bob de Marco greatly. He definitely learned to turn things around, and found ways that enabled his beloved mother Dotty who died recently to have a happier life, and in the process he rose above blaming her, or her dementia for his own hurts and challenges, finding ways to improve the experience for both of them.
Someone wrote this to me a while ago, via email, and as I do get the occasional ‘hurtful or challenging to read or hear’ comment, here or in person (well-meaning I am sure), I thought I’d share it here as it shows yet another side of the coin; “I wanted to kneecap that ‘friend’ who claimed you only wanted praise and to be surrounded by sycophants, where it’s clear to anyone who has read your blog regularly, that is emphatically not what you are about. Christ we all need affirmation but you don’t invite it, even subtly, and in fact you show a great deal of tolerance for different views. Life is hard for everyone at some stage, and we need to be kind to each other; that obviously doesn’t equate with slavishness or insincerity. It does mean thinking about one’s motives before, if ever, delivering a punch in the ear. I once valued wit and intellect more than kindness and cheerfulness but I think these latter qualities come with maturity and the knowledge that most of us are wounded souls doing our best. Your ‘friend’ is being a pain. It may be temporary, let’s hope so, but she doesn’t do you or anyone else any service by being mean-spirited.” I don’t think the friend who wrote to me about being surrounded by sycophants was meaning to be mean, but it is interesting to see how someone else interpreted it. Even my own recent interpretation of the experience where I thought I was being accused publicly of being ageist was wrong; the person was not accusing me of that at all as we have discussed it since; and yet another person then highlighted they thought some of my recent blogs could be interpreted that way. Confusing for sure!
My friends, the ones I know in person, and the ones I now have online, the ones who leave me comments on my blog or by email, I feel sure don’t ever mean to be mean-spirited. Maybe they just want me to see things another way, maybe they say things because they actually have little idea what it is really like for me to live with the diagnosis of dementia (quite likely), or maybe there are other reasons, like misinterpreting something. I do like the richness of the vast variety of thoughts and opinions out there, which is why I add most of the comments, even though sometimes it hurts to read or hear them. I do wonder sometimes if I was writing a blog about for example, how tough it is coming out about being gay or being someone from the Stolen Generation, or blogging about a devastating cancer journey, or sexual assault, or domestic violence, whether so many people would be quite so judgemental or outspoken, which my husband also suggested recently. This blog has not been written to encourage sympathy for me, or distress to others, merely to put across a few ideas. My life continues to be interesting, busy and very fulfilling, in spite of dementia and I strive to learn more every day, and to try to make it a better place. The world is full of millions of people, all of us with differing viewpoints, political persuasions, sexual persuasions, religious beliefs (or not), all based on our own experiences, interests, passions, education, childhood, profession, and so on. For me, that is what makes life so very interesting.