I can’t help but draw a parallel between being a caregiver to a parent with dementia and what I experienced in the early 90’s tending to my best friend with AIDS.

Back then I felt lost. Drowning in a sea of unanswered questions. In great need of something that could help me navigate a foreign land. As it so often happens, I found my “compass” in a book, And the Band Played On – by Randy Shilts.

Within its pages I found answers to questions that, up to then, doctors seemed unable or hesitant to respond to. Despite the pain that accompanied reading, I found comfort in knowing I wasn’t alone. It was my bible that accompanied me wherever I went.

Deja-vu all over again. A different disease, yet no different a journey.

With both have come anguish, terror, rage, denial, and painful suffering. There is the pain of friends watching over a loved one sink slowly to their death. And the growth of fear in whole communities.

And just as many unanswered questions. Thankfully, once again, I’ve been rescued with the recent publication of two books that, finally, approach the subject of dementia, not from the perspective of sufferers, but of those who care for them.

My Father’s Brain by Sandeep Jauhar and Travellers to Unimaginable Lands by Dasha Kiper.

People who care for those living with dementia, says Dasha Kiper, are its “invisible victims”, rarely discussed in the research literature and given little support.

Caregivers quickly discover there is no perfect guide. No one advises you on how to cope when someone you love becomes a different sort of person. Not one Doctor I dealt with, and I dealt with many, suggested a reading list to help understand my father’s needs or how to take better care of myself.

According to the World Health Organization, dementia (or dementias, since it is really an umbrella term covering multiple conditions including Alzheimer’s and vascular dementia) is now the seventh leading cause of death globally. Cases are rising dramatically across the world along with the rise in ageing populations. The odds are quite high that you, or someone you are close to, will become a caregiver. I’m hoping you will pass this along to help ease their burden.

My Father’s Brain is a son’s story of his father, a world-class geneticist in his 70s, and his steady decline through the “seven stages” of Alzheimer’s. Even the author, an acclaimed cardiologist, could not escape the anger, frustration, disbelief, denial, isolation and immense sadness of the disease.

Coming across stories of caregivers making the same mistakes I had was a source of comfort in knowing I was not alone in my feelings of helplessness, the nagging uncertainty and incessant questioning if the decisions you made were the rights ones and what should be the next steps. You really don’t know how to behave or respond the first time something happens. You find yourself in a situation where you must cobble together your own ‘how to guide’.

Most importantly, I discovered that I wasn’t alone in misjudging my dad’s illness and took it as the normal aches and pains of aging. Knowing this was a common error went a long way to ease the guilt of “I should have known better.”

Both books will be a blessing to anyone on the journey into this “unimaginable” territory and provide the compassion that caregivers are so in need of.

“There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” ― Rosalyn Carter