Return to the scene of the FTD crime!

Home heartAfter three years in the wilderness (well, not really, but it sounds better than “after three years living somewhere else”). After three years away from my home, last weekend I took the plunge and returned to where it all began. My war with FTD that is.

Seven years ago, my husband was diagnosed with frontotemporal degeneration. We lived together in the home we had shared with our family for the previous seven years. Five years later, he died. Broken down into a myriad of confused pieces by the degeneration of his brain, he slipped away peacefully at the place he was living, ten months after he had left our home for the last time.

Last weekend, I went back. I had driven by, but never been inside since the day I left, about four months after he moved into a care facility. I couldn’t manage his behaviors at home any longer, not and work to support us both too. I left the house because, well, now I’m not really sure why. I just knew I couldn’t stay there. Maybe because I felt so alone, maybe because the house felt too big. I don’t really know. It felt like the right thing to do at the time. I have said several times that I didn’t think I would ever live there again.

But last Saturday, I changed my mind. It’s allowed, right?

I went back to look at the house since the lady who was renting it had moved on to pastures new. I knew some updating would be required, so I went to see just what needed to be done. All week, I had been going back and forth between the choices I had. Do I rent again? Do I sell? Or – do I go back?

Well, I have decided go back.

I am going back to live there because I found that it was not as emotionally disturbing as I thought it would be. Like most anticipated, maybe even dreaded events, it was not nearly as bad as I had imagined. It actually still felt like home. There were a couple of tearful moments, but certainly not the anguish I was anticipating. The tears came from good memories. From fun and funny times. From love. Love for my husband, love for my family. I realized it was not the house that gave me bad memories, but FTD. Home-Heart

FTD was the bad guy, not my home. Not the place where we laughed with friends, played with our grandchildren, relaxed in our pajamas and laughed at the stupid things that noone else would ever find funny.

FTD was the destroyer of all that, not the house. There are no do-overs with FTD. It’s done now, no going back.

But I can go back to the place where I feel at home.

Oh yes, it needs a little makeover and a new hairdo, but that’s good. When it’s done, it will look different. It will be different. A little like me. Changed forever but with the essence of what it is still intact.  My home.

My husband loved our house.  When we relaxed out by the pool, for a long time we had a favorite CD – Crowded House Greatest Hits. Our favorite track was “Don’t Dream It’s Over”. As I drove away from the house on Saturday it came on the radio.

Whatever you believe, the final decision was made and confirmed…..

HeartHome

The Dance

frontcover

I am very happy to announce that the story of our journey through frontotemporal degeneration is now published and is now available from the Amazon bookstore.

Writing and publishing it has certainly been a journey in and of itself. I used my journals from the time when my husband was first diagnosed and set the story into a context which describes our early life together. I had wonderful memories upon which to draw. Our letters, mementos and musical memories all contributed to the overall picture. I hope that this serves to illustrate how much our life together was changed by the bastard disease.

Of course, during the writing of the book, I had to go over and over the story many times. The living of it was painful and the writing of it was equally so. I cried almost as much writing it as I did living it. Even now, two years after my husband died, I still want to share with him the sense of accomplishment I feel at having got it all down on paper. But of course, it isn’t all of it. Each time I read it, I think of little things that happened in between the experiences in the book. About things he did and said, things I did and said. But the book isn’t really about me. It is about how this disease causes brain degeneration and ultimately, life degeneration. Our lives were broken down, one brain cell at a time.

Even though my life was irrevocably changed by our experience, my husband’s was changed and ended by it. So it isn’t about me. It’s about our love. It’s about the life we shared. It’s about what it did to him and vicariously, to me. Most of all, it’s about us. Who we were, and who we became.

I speak with other people who are caregivers for loved ones with FTD all the time. I see how their lives are changed too. Daily, weekly, monthly. But the big change is forever. We are forever changed by our experience and what FTD brings to us and takes away from us.

There are many cliches about losing someone you love. So yes, there is a hole in my heart. Yes, a piece of me is missing, never to return. And yes, I will never “get over it” (and yes, I know that’s not grammatically correct, but you take my point). “Getting over” your whole life is probably impossible. I’m not even going to try. I have been through it, around it, got stuck in what was left of it and have somehow reached a place where I can handle it.

FTD made the holes in my life and my heart. The scar tissue that has grown over the holes is a fine, permeable barrier that sometimes lets sadness in and out. The FTD is gone now. It left my life but it touched me in such a way that I cannot let it go completely. I even wrote an article called “Enough”. I have not published it because I am not yet sure that it is completely over for me. Touching the lives of people who are still battling with the bastard disease remains important. Maintaining contact for what is happening to those people who are in the throes of FTD, or just beginning their journey seems like the right thing to do for now. How long that desire will last, I don’t know. I just know that right now, it still feels a little like a thread of a connection to what happened to us.

And I still need it. I’m not quite ready to say “Enough”.

I hope that you enjoy the book. It was written from the heart, as is all my work. I felt the need to get the story out there, not because we’re important, or because I am vainly seeking attention. But because when it happened to us, so little was known about FTD. So few people were being diagnosed, and so many were and are still struggling every day. I receive comments from some that my blog sometimes lifts their spirits and that is all I need – to know that maybe it was not all in vain.

That maybe our battle was just a skirmish that will contribute to winning the huge war on all kinds of dementia. I have to hope that it is possible. I have to hope that every little thing we went through was for something. I don’t know what it is yet and I may never know.

I hope your FTD days are as peaceful and calm as possible. That you are able to find a way to handle the terrible days with love and humor.

Shakespeare Love

FTD – Happy Anniversary, you bastard

wedding photo

Today is the 38th anniversary of our wedding. In 1976, we were bright-eyed and eager to see what life had in store for us. I am so glad we didn’t know that FTD was going to invade our lives and destroy what we had built for thirty-six years.

I cried today. That’s not really unusual. I was sad and my dog brought me his bone. That made me cry. I guess it wasn’t far away, under the surface and that simple act of innocent kindness brought it out. It was then that I realized that our anniversary is still significant to me, even though my husband died two years ago. I realized that nothing –time, distance or circumstances will ever change that. People ask me if I’m dating – “You’re still young!” and look at me strangely when I say that it never crosses my mind and I don’t see a time when it ever will. Spending almost forty years with someone that you love so unconditionally and they you, makes that unthinkable.  The things one has to do and endure when caring for someone with FTD  have somehow made me more detached from reality. I can engage in the stuff of life – fun, laughter,smiles, sadness and joy. But I am so changed by my experience that I am almost a different person entirely than that hopeful, full-of-dreams girl that I was in 1976. People have been on the receiving end of this new person and are sometimes shocked I think, by how different she is from the old me.

FTD destroys lives and dreams. But it never destroyed my love. Somehow, I was able to separate the love from the horror. At times, it was as if everything that was happening was not happening to us. I have written about love and FTD many times. It was a driving factor in my FTD experience.  I cannot imagine how I would have coped without it. My own love for my husband, the love I knew that he still felt for me, even though it was masked by the bastard disease, and the love I had for our family as I witnessed their pain. The journey was like walking a path to a destination you never want to reach. As painful as it is, you know that reaching the end will be even more so. And there is nothing you can do to stop the relentless onward march towards your destiny.

In 1976, I imagined my destiny to be somewhat different. White dress, first waltz, flowers and cake. Handsome husband, first home, fun, fun, fun. He only forgot once, after about 3 years. He remembered after he had dropped me off at work. I got the best bouquet and champagne dinner that day 🙂

A year before he died, FTD made him forget too. The bastard disease created another hole in his brain and our anniversary slipped through. That last anniversary we were together, our son came round with a card for us and my husband was devastated that he had forgotten. So my son gave him the card to give to me. That made him feel better that he thought I thought he’d remembered.  Even in the depths of his confusion, he felt the love. One month later, he moved into his first residential home and ten months after that, he died.

Of course, the thirty-eight years were not all fun, fun fun, even before the FTD. We had challenges, just like everyone does. At first, when FTD came along, we carried on as ‘normal’. As you know, the onslaught is so insidious, it is shocking at times to realize that things have changed. Then suddenly –Bam! Your groom/bride can’t speak properly anymore. Or they’re hiding things, or spending all your money. You are inexplicably broke and getting thrown out of your house. Or you are bailing your loved one of out of jail. Thankfully, those last two things did not happen to me, but they do to someone who cares for a person with FTD. The bastard disease has a blatant disregard for propriety, respect for others or socially acceptable behavior.

When you make those promises -“In sickness and in health”, wedding-rings-on-handswhen you’re twenty years old, you don’t really understand exactly what it is you’re signing up for. So when the ‘sickness’ is FTD, those promises are really put to the test. But for me, it was not something I had to think about. Maybe I have innate qualities that I didn’t know about, I’m not sure. But I really don’t think I did anything heroic, or anything that all of you are not doing for your loved one.

So what is the point of my blog today? Other than catharsis, I wanted to share how FTD has uncovered things about me that I didn’t know before. In 1976, I wasn’t a nurse, wasn’t a mother, wasn’t a wife until October 30th. I was twenty years old. No-one even knew what FTD was then. I’m glad I didn’t. I guess the point of my writing today is to try to impress upon you how important being in the moment is. Usually I try to offer some kind of encouragement and advice about how to handle your own and your family’s emotions amid the turmoil of FTD. I don’t think I can do that today. Because some experiences and emotions are so personal and unique, that to tell you how to handle them would almost be an insult. You are you, I am me. I just told you that I am not the me I was. I am irrevocably changed by experience. You will be too. The transformation has already started. Your metamorphosis into the post-FTD man or woman is already under way. You can’t stop it,  just like you can’t stop the FTD. All you can do is go with it. Watch in wonder as it appears. I wish I could liken it to a beautiful butterfly emerging from a chrysalis. But I can’t. I can’t promise you will be a more beautiful you –outside or inside. But you will be different, that I do know. Your life will emerge as something completely new. Post-FTD, without the stresses and strains of the practicalities of caring for someone with a debilitating, terminal condition, you will probably be baffled as to who and what you are.

I wish I had an answer. I may never know the answer. I don’t even know if there is an answer.  I am full of admiration for those of you who are still doing what I did every day. My heart breaks for you because I know what is to come. Now I know. I didn’t know in 1976, thank goodness. I was able to have a full and happy life and marriage. We had many champagne moments. I am so grateful for that. My life is still full. It’s full of sons and grandchildren and other family members. I have grown closer to all of them as a result of what we went through. Going back to an earlier comment ” Are you dating yet?”, all I can say is –why would I want to expose anyone else to what our family has been through? How could they possibly understand our pain. They weren’t there, they don’t know. It would not be fair to anyone, an outsider if you will,  to expect them to understand.

I make no apology for the somber tone in my post today. It’s a sad day for me. Tomorrow is a new day and I will bounce right back and be the new me again.  These days are a reminder of what once was. Of what I had, what we had and did. So it’s all good. I have wonderful memories. Even some of my FTD memories are good or at least funny. But there are many more non-FTD memories. From 1976 until 2012, it was a terrific ride. From 2012 until today, I have been able to reflect and rebuild.  FTD could not take that away from me. I may have been down, but never out. My husband loved the feisty me. She’s still around as everyone around me will attest. Bastard FTD. Ha! Couldn’t take that away.

My husband loved champagne. We drank it at every opportunity. I will be having some later.

Happy anniversary to us.

love champagne

FTD – Life in the Past Lane

 

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. Couple on the beach

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. factory women

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.jump drives

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.

That’s life.