“Those people”. You know those people who ruin your life. The ones who, when you have FTD, tell you that you can’t drive, go out alone, cook anything, use sharp scissors and pretty much anything else you want to do.
Those people are the pits aren’t they? When you have FTD, they make you take a shower and change your clothes when you don’t want to.
Those other people – the ones who don’t live at your house, but somehow seem to control your life, they take away your driver’s license, tell you that your new debit card is in the mail and block your internet.
Those people at the supermarket, they count out your change, but you’re not sure if it’s right or not. Those people at the airport, they tell you to walk through the little tunnel thing and then tell you to stop when it beeps.
If only your mouth worked properly, you’d be able to explain that you’re not a child or an imbecile. It’s just that your brain gets mixed up.
Those people keep hiding the cookies, damn them. And the chips and the ice cream. When you put your boots in the freezer though, you found the ice cream. And ate it. All of it. Yum.
When you spoke to those people in the bar, they smiled and nodded. Then moved away slowly. When you asked someone a question in the bookstore, they turned and walked away. Perhaps they were foreign and didn’t speak English?
When you went into the bathroom, those people helped you take off your shorts and underwear. But what is that white round thing on the floor? What do you mean, sit down? You’re standing there half-naked. But what are you supposed to do now? Pull up your shorts and go out of the room. Oh, so frustrating, they just don’t get it, those people.
When you have FTD, those people just don’t get it.
Livingston et al. have created a slightly daunting 256-page systematic review of the latest evidence to support interventions like light or aromatherapy for agitated patients with dementia. They have brought the scientific inquiry to a higher level by stratifying the results of the interventions by the severity of the agitation. This level of specificity hasn’t been investigated before across interventions. Unfortunately, there haven’t been enough trials published for them to use quantitative analysis except on light therapy (bright lights to reduce sun-downing or confusion). But they try to compensate for this by performing a qualitative analysis to report on the efficacy of the other types of interventions available. Of interest, whereas aromatherapy and light therapy were at one time the interventions that tested well, time has told on these results: aromatherapy and light therapy will not work (as caregivers I’m sure could avow) on patients with severe agitation.
My post today is not really about FTD. More about what has happened in the post-FTD era. Your experience will be vastly different to mine. Perhaps my sharing will help you. But I think it will help me more. FTD has shaped my life in ways that are somewhat indescribable, but I will do my best.
Last September, I had cause to get together with family members and many old friends for the first time since the bastard disease took my husband. I was able to successfully coordinate seeing many people in the space of 2 weeks during a visit back to the UK.
My husband had died a year before and I had not seen most of them in the interim. I expected it would be emotional and it was. More for all of them than me. I had had a whole year in which to begin reshaping my life. They all said I have not changed. But I am changed. I think for the better. I have a life that my husband and I started together. A different life than the one I envisaged six years ago, but still a life. A life that we filled together with stuff, people, and love. Only now I am enjoying it without him.
People never cease to amaze me. Their perception of widowhood is varied. Of course, I am not the only widow they know. There are many women much younger than me who have arrived at widowhood unexpectedly under much more tragic circumstances.
One of the things you ask yourself when newly widowed is “Who am I?” You have been someone’s daughter, wife, mother, sister/son, husband, father, brother your whole life. Figuring out who you’ve become in the interim is not easy.
Then you realize that you haven’t become anyone else. You’re still you. All those little things you never liked about yourself are still there. Ha!
But, here’s the thing. The new you is the old you with a new view on the world. It’s as if you can see things more clearly somehow. When you’re part of a couple, a partnership, you tend to like the same things, move in the same circles. That’s why you’re a couple —right? You even do things just because you know it pleases the other person. When you don’t have to that anymore, it feels weird. You don’t really know what to do.But then you begin to see things from an entirely different perspective. Instead of seeing the world as one of a pair, and what it means to both of you, a collective being like the Borg, you see it as a single entity. What it means to you, not what it means to us. That’s not to say that when you were part of a couple you didn’t have independent thoughts and opinions. Just that somehow, those things are less important than just being us.
Of course, you miss all the old things. The sharing, the affection, those small things that were only funny or meant something to the two of you. That happens while they are still alive. But acceptance brings a power from within you. A power that you didn’t even realize you had. It’s the power of you. Not pleasing someone else brings freedom. Not the kind that you would have wished for necessarily. But the freedom to have opinions, make decisions, do things that you may never have even considered before.
Ours was not the kind of relationship where one partner had dominance over the other. Not the kind where either told the other one what to do. It was built on the respect for one another’s feelings and sensitivities that develops over many years of watching and experiencing life’s trials and tribulations together. Years of success and failure, tears and joy. You may not always like your partner, but you always love them. Even when you don’t like their behavior, opinions or decisions. You still love them, if your love is true and unbending.
So the freedom that widowhood brings is bitter sweet. You are free to say, think, do whatever you please. But often you don’t want to. Or you have forgotten how. Or maybe you never even knew.
I went from my parents house to being married, other than a short period where I lived away from home with friends. So complete independence was somewhat of a mystery to me. I had never lived alone, never been financially independent, never owned my own home. Never did any of the things that young, single women take for granted these days.
I was born into an era of building and rebuilding lives that had been irrevocably changed by World War II. My own parents and their families had been affected in all the ways that wars cause to people. They had lost family members, been bombed in their homes and lived off government food rations for years. My paternal grandfather survived the D-Day landings. My maternal grandfather was captured and taken as a prisoner of war for years. My mother never got over that. He was gone during some of her most formative years. She learned to be independent, take care of her little brother while her mother went to work.
In the absence of another provider, there was little choice. Learn how to do it, or live in abject poverty My grandfather was appalled when he returned home after the war that my grandmother knew how to change an electrical plug and do other home repairs. Before that she had been a housewife, relying on the breadwinner to care for her and their children. He wanted to know who (what man) she had in the house to show her how to do all those things. But there was none, she just figured out what she had to do to survive.
When I was born, ten years after the end of the war, things were beginning to improve. There was more food, a better infrastructure and just an overall feeling of hope. The 1950s and 60s were a re-awakening of everything good that had been destroyed for many people.
The fighting spirit instilled in my mother by her parents and their experiences has somehow been passed to me. Whether it’s genetic or not, I’m not sure. My grandfather survived three years of starvation and god-knows-what in prisoner-of-war camps in Italy and Germany. He never spoke of it, but whatever it was that kept him going is most certainly present in my mother and has been passed on to me.
I am not comparing the experience I went through in caring for my husband and his dementia for five years to my grandfather’s imprisonment. Not at all. But I came to understand a different kind of incarceration. One of the spirit. The kind that beats you down so many times, you often wonder if you can survive it. It’s not a physical beating; there are no visible scars. It is emotional bruising that takes a long time to get used to. I say that because it doesn’t go away. You get used to it, but it doesn’t go away. It’s like a permanent deathmark. A port wine stain of the soul. No surgery could take it away.
You feel like your port wine stain makes you stand out. Being by yourself in the midst of a crowd of people, feeling different, is a strange experience. I wouldn’t call it loneliness. I don’t feel lonely. I miss my husband, of course I do. I miss the familiarity, the everyday grind of normality. But I often wonder what we would be doing if things had taken a different course. I don’t dwell on it too long because it’s not a very productive way to think. It’s hard to describe your thought process when experiencing losing someone close. It’s different for everyone of course. No one had what you had. No one shared what you shared.
It’s so easy to slip into Clichéland —“I’ve lost half of me”, “I feel like part of me is missing”. All true of course, but so inadequate when trying to describe how you really feel. I’ve read many books, articles, newsletters sent by Hospice and the funeral home for the first year after my husband died. They are well-intended and actually sometimes food for thought. But still, there is this indescribable hole inside me that defies illustration.
Truth is, sometimes you forget what’s happened. You get on with the day-to-day stuff. Your lost one pops into your mind frequently of course, but you have to work, sleep, eat, see people, so the experience becomes even more personal. Even less worthy of sharing. Because really, no one want to know. They don’t want to see it, hear about it, have to remember it. I’m not being self-pitying here, just realistic. People tell me their own woes. Hospital visits, deceased parents, sick kids. It’s all just life.
I accept life. I accept that shit happens. Most people fall into two categories. They were part of what happened. They saw the anguish, the pain, the screaming, the tears. Or they weren’t. So the only point of reference they have is how it affected them. How close they were to the proceedings. How much they were involved. Other than that, it’s all mine.
Seeing people who remind me of my marriage and life with my husband is often painful. But there is a kind of numbness that exists. Psychoanalysts would probably say that it is my brain trying to protect itself from the pain. But I have faced the pain. It’s there. I can’t ignore it. I have embraced it just like someone who has to inject themselves with insulin every day. I accept that it is a part of me that will never go away. Having pain doesn’t mean I can’t be happy with my lot in life.
It is what it is. An overused saying but oh so true. So, as my life is not what I envisaged before the bastard disease took hold of it, I don’t really envisage any more. I take moments, days and keep them in my new memory bank. I have put the other one onto a virtual jump drive in my mind, where I take it out frequently and look at it. Sometimes every day, sometimes less often. It’s like a photo album that catalogues all my experiences for thirty-eight of the first fifty-six years of my life. For all I know, I could have another fifty-six left to go yet. I’ll need another jump drive.
I have other albums from before. From happy childhood days. From teenage years. I look at those too. But this new album that I’m working on; this new jump drive that is my widowed life is a little different. Because the pictures are superimposed on the pictures from all the other albums. So, sometimes, the pictures are out of focus. Blurry. Unclear as to what they mean or symbolize.
I quite like it. The blurriness. I can see what’s happening, I can see what happened before. Some people around me can only see this album. Only see today’s pictures. It takes a special kind of vision to be able to sort the images from one another.
So, where to from here? I’m not making any plans. I like the day-to-day. I find that when you make plans, something usually comes along that presents another path. Sometimes it’s better than the original plan. I like that. And if it’s not, well, so be it, It’s just another file on the jump drive.
FTD was an experience in my life. Not one I would have chosen, but one that came along anyway. “It” took away what I had become, what my husband was to me. Then, eventually, it took his physical entity. If you are the type of philosopher that believes everything happens for a reason, then I am still waiting to find out what that reason is. But it’s not been that long. I can wait. Until FTD came along, my life, our life, was ticking along quite nicely, just like everyone else’s. Ups, downs, but mostly in between.
That’s life. That’s how mankind has moved through thousands of years of existence. Doesn’t help when life/FTD/cancer/people step in and change it, but no one ever said that you could have everything you wanted.
The more I read, the more I feel like I have to bite my tongue. Since my journey through FTD is over and I have come out the other side, I am now on a different journey altogether.
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.
FTD - Aspects and Experiences of Frontotemporal Degeneration 