Living in fear of dementia as a transgender woman

At 71-years-old, Shoshana Pellman  is terrified of being diagnosed with dementia in her older years.

It runs in her family. Her mother was diagnosed four years ago, and her late father had it too. 

But for Shoshana, as a transgender woman, that fear comes with added layers of anxiety around losing her memory, her sense of self, and her ability to care for herself. 

"As a trans person, especially one who transitioned later in life, my short term memory would go...you don't remember that you transitioned.

"Will I be called by my female name? Will I be allowed to dress the way I felt comfortable...as a woman?," says Shoshana, when referring to the type of care she'd receive. 

"That's the hard part. Not knowing will I be respected as a human being later in life?"

Robert Nelder of the Senior Pride Network and Egale, a Canadian human rights trust, gives cultural competency workshops around LGBTQ issues for those who work with seniors.

"Actually, some personal support workers have gone to their own managers and said, 'I am not going to bathe that person. I refuse to bathe that person.' And in some situations, they just change the personal support worker around instead of changing the attitude...," says Robert.

"I want to be safe. I want to be able to know that if someone looks at my body, they won't say things, disparaging things. They won't insult me. They won't make fun of me," says Shoshana.

She also notes that some health care providers understand the issues she faces, but many don't.

"I'm dealing with it now. I've already had some emotionally hard experiences with service providers in the health field...

"In some ways I'm torturing myself because I don't know, I really don't know what's going to happen. And will the system be ready to deal with me and with others in our communities with respect?"

This story originally aired on October 8, 2017. It appears in the Out in the Open episode "Ageing*".