I read comments, posts, news articles, medical journals, research articles. They all tell me the same thing. The inexorable march of FTD continues. But we are no closer to a cure or even any kind of treatment to relieve us of this scourge. It could be likened to a new plague. The current stats are that 15-22 in every 100,000 people will be affected by a non-Alzheimer’s dementia during their life. That’s a lot.
Having lived through the nightmare of FTD and caring for someone, both at home and in residential care, I realize I may have a different perspective from someone who is currently living in the maelstrom. It is so difficult not to look at what they are doing and saying without feeling a strange detachment. Oh, I remember all too well the pain, the anger, the frustration. It still hurts even two years down the road.
But I have become more philosophical. Yes, losing my husband to the bastard disease was the single most life-changing event I have ever experienced. Yes, I still feel disappointed about not having my partner of almost forty years still here to share another thirty. But when I look at the experiences that others are now going through in the FTD world, I want to say “Toss the books and the research. Stop trying medications that may ‘slow’ the progress of this bastard disease. Don’t even think about physical therapy, speech therapy or any other kind of freakin’ therapy. Because it’s all futile. It’s all for nought.
Well,not really nought. Because selflessly giving your love and life to the care of someone who needs it is never for nought. As thankless a task as it sometimes seems, the real person who was your loved one would appreciate it. I think channelling our energy into researching therapies and medications is an attempt at trying to fix things. Even though we know we can’t, we just will not accept that. I’m not being critical, I was just the same way. But obviously, I see it from a different perspective now.
Just do what you have to to keep them and you safe and comfortable. Just do what it takes and then just focus on loving them and savoring every last minute. Every last tantrum, every last angry word. Because however many years it takes, FTD will take them. It will take their soul and yours, swish them around and spit them out. Yours will be tattered and torn. Your loved one’s will be gone altogether. No trace remaining of the darling you loved and cherished. Except in your heart.
You will be caught between hope and closure. No chance of recovery, no final event. At least not until you have been beaten and pushed to the limits of your strength, courage and dignity. We try to hold on to the ‘normal’ for so long, even when normal is a different thing than it has ever been before. Normal can be something different every day.
But speaking of hope, what is it about us –humankind, that clings on to the slightest glimmer of it? Hope, springing eternal, can deceive you into wishing it wasn’t all real. Trick you into pretending that it’s not really happening. Soothe you into comfortable denial.
That actually works for a while. Even when you know what you know. Knowing is not believing. Understanding facts and research does not take away your need to hold on. To stretch for something that was there, but is slowly slipping away. Because you don’t want to believe it. Even I, as a nurse, had moments of frustration where I would beg my husband to “fight it” Fight it! How ridiculous! He could no more fight it than I could fight Manny Pacquiao.
Sometimes things seem so hopeless that you don’t even have the energy to hope. But it’s still there. Niggling away at you. Because deep down, deep inside, you just cannot bear the truth. Cannot accept the inevitable. Until it comes that is. And even then it takes a while.
I don’t wish to sound bitter. I’m not bitter. I’m not even angry about it anymore. I want to channel my energies into making things better for those who still soldier on through this bastard disease. My contribution may be infinitesimal in the grand scheme of things, but I am willing to listen, learn and empathise. And it seems to help. I haven’t forgotten what happened to us. I can just set it aside at times and do something productive about it.
I can’t cure FTD. I think that will be a long time coming.
But I can give it a good run for it’s money. I can help to prevent it from taking more than one victim at a time.I can show people the way through the minefield. If all else fails I can hold their hand.