The disease runs its course with as much rush as it does pain because of the old and new symptoms. Adapting and learning is the watchword of each day. Living through hard months is already a habit.
Tiredness gives her no respite and long walks are no longer an option. Now we have to make do with several short walks a day. With this disease there seems to be no respite and much less routine.
We have had to change Oralis's diet because she no longer has the ability to use cutlery, chew and swallow certain foods. The only independence left to her in this sense is one or another food that she can hold with her hands, however, she can only eat soft and easily digestible foods.
Among the most painful and frightening changes are seizures. The first time it was two episodes on the same day, needing hospitalization. That day is only comparable to the one in which we received the diagnosis and learned what FTD is and its consequences. And even though I already know what to expect, I am never prepared for something so devastating and painful.
The worry that another episode could happen and she could get hurt is a shadow that haunts me every day and from which I can't escape.
The FTD doesn't let up, but neither does loneliness. Medical visits have made me understand that there is a huge lack of knowledge about Frontotemporal Dementia in the health system and, even worse, a lack of empathy. Since when does ignorance justify indolence? Doctors and nurses alike give poor treatment to people who suffer from this disease.
Oralis has lost weight, has humor swings and mood swings, gets very exhausted and practically wants to sleep most of the day. The speed with which certain symptoms that we expected have appeared has been heartbreaking. She began to forget and confuse certain names and faces.
It is incredible what it means to meet someone and realize that even though language disorders are becoming deeper every day, a sound or a gesture is enough for me to understand her. We have always had good communication and being a talkative woman is something that has not changed. I enjoy listening to her and talking with her as much as the first time.
We spend our days between laughter and sadness, always looking for a way to make that sadness fade as quickly as possible. Yes, sometimes it is exhausting, but when I see her smile again, every effort is worth it.
She has tough and dark days, days when she feels alone, depressed and forgotten; days when she says “this was not the life I wanted”, “I just want to sleep and nothing else”, “I don't have friends anymore”.
On those dark and sad days, Bella is always by her side to fill that space, doing something that makes her smile or filling her with serenity just with her presence. Bella has been the best gift for Oralis on this horrible journey, her best companion and one of her greatest supporters. Another great support for her has been the family, who even from a distance are watching her, keeping her company, even for brief moments, moments that make her happy. In short, it is the small joys of life that make those days of fear and restlessness last as little as possible.
FTD is a disease that can be very lonely, and those who call themselves friends often disappear without realizing that Oralis, even with its limitations, is still Oralis and that a simple phone call can make a difference.
I don't know how I would have coped twenty years ago, but now social media support groups have been an important bastion of learning as Oralis continues to experience physical and emotional changes.
I have had to learn to be patient and understand every step we take, to laugh even when what I want is to cry. It hasn't been easy and I'm sure it never will be, but I have to keep going.
I feel an immense sadness and a deep pain that I don't know how to ignore. How could I, if every day that passes I am losing a piece of her, the accomplice I chose for this and every day. The pain doesn't let up either. I desperately cling to the consolation of living each day with her as if it were the first day of our lives; making her happy, laughing together and giving her everything she needs to make her feel comfortable and happy.
This journey that we did not want to start does not stop. Oralis continues to fight for her and against her. I fight for her, for Bella and to keep the end of this trip at bay, because I already know how it is and I swear I don't want to live it.