When I hear the word dementia, I feel resentment.
For those of you who are not familiar with this term, dementia refers to a cognitive condition that is often irreversible and affects the memory and other thinking abilities, and it can be severe enough to interfere in the lifestyle of the person who suffers from it.
Also, for those of you who have never met someone with this condition, dementia means a painful and probably very extended process that not only affects the person who has it, but also the loved ones in his/her life. In my experience, it has been one of the most difficult challenges that my family and I have ever faced.
Anyone who knows me, also knows this: I absolutely LOVE my grandma. She truly is one of the greatest loves of my life, and I know for sure that I am one of hers. We have been sidekicks, and even partners in crime, for as long as I can remember. Our relationship is filled with joy, tenderness, laughter, complicity, witticism, learning, and lots and lots of love. Even today, when she is 91 years old, with and advanced state of dementia, she only reacts to my voice, and even now and then sings along with me. But I know, with a broken heart, that her condition will only make things harder for her, and even more for me. And this is when I could only wish there was professional, besides my personal therapist, who could be a support for her, and the family, through these difficult times…
Let me put it this way: in Mexico, mental health has not been a priority thus far. We do not have anything remotely similar to the NDIS or My Age Care, nor do we have any kind of monetary support from the government for people with disabilities. There is a public institution that oversees family affairs, but that is just it: a general approach to some very important needs.
So… when my grandma started to need a more special care, we had to figure it out on our own. We hired a private nurse, whom we pay from our pockets, and we split with her all the tasks that need to be done: bathing her, changing her, feeding her, etc. By the way, when I say ‘we’, I mean my 60-something-year old mom, and her older sister; yes, 2 female senior citizens, and one young adult who does not get any concession or license at work, to take care of our matriarch — without any professional nor economic support! Now, let me be clear: I am not complaining, but I need to say it, has not being easy!
If it was up to me, I would switch things around in my country to mirror and follow some of the social processes of developed countries like Australia. I’d like to live into a more inclusive, supportive system for all our citizens. In the meantime, I have been blessed enough to find emotional guidance from my therapist, spiritual direction from my pastor, and somehow, within my family, I have found a strong support. I can only hope that one day, with my voice and actions, I can make a contribution to achieve this dream: that no other family has to go through the terror of any illness, without the proper support. Until then, I will remain strong, believing with all of my heart that, in the case of grandma and I, all we need is love… and love conquers all.