FTD – Hello, it’s been a while.

Arnie - I'm back

I’m back! Firstly, I’m sorry it’s been so long.  I have not written here since April. Somehow, I feel a little guilty about that. As I have tried to distance myself from the bastard disease, it has become apparent that proximity is not the issue. What has happened to me is that as I have been able to distance myself from my own experience, I have become more attuned to the experience of others. I thought I could leave it behind, but I find I can’t after all.

I was done, but I was done with feeling what it had done to me, but not with doing something about it. It seems funny now that I have had a hiatus from being so deeply involved, it looks different, feels different.

There is so much happening in the world of FTD. Sadly one of those things is that the Facebook group for which I am an administrator –“Frontotemporal Dementias Information and Support”, has grown from 400 members in April of 2014 to almost 2,000 today. The group is comprised of a wide variety of people –caregivers, spouses, adult children, writers, parents, friends, professionals and not least, those afflicted with the bastard disease. Every day, more new members are added. I don’t know if it’s that more cases of FTD are being recognized, or there really are more cases. My thought is the former. This is a good thing in that if more cases are being identified, it means that more professionals are becoming knowledgeable and familiar with the devastating effects of the disease on patients and their families. More cities are forming support groups to help somehow explain and assist with the progression of this devastating illness. I can now look into what’s happening, rather than being entrenched in it. I have a new perspective and I hope that will enable me to ease the way of others who are just beginning to try and navigate the storm.

If you have not read my work here before, some of my earlier articles may help you if FTD has reared its ugly head into your life. I’m not bragging on my writing, just want to help in any way I can to ease your way through the quagmire of confusion in which you will undoubtably find yourself as you travel the path. Some of my earlier work was written in the months following my husband’s death in 2012. I was shocked and unhappy, even though I had known for five years what the ultimate ending was for our life together. The FTD years were a culmination of the forty we had spent together. We married fairly young, and like many of the men and women I met along the FTD way and since my husband died, we spent all of our time during the first three years after diagnosis when he was still highly functioning, in a state of disbelief.

Disbelief is a very common experience at the start. Shock, sadness, anger, denial -all very common, especially in those closest to the diagnosis –spouses, children, parents.

disbelief

Once acceptance arrives, most people start thinking about the practical things –what will happen? What will I see? How long can he/she stay at home/drive/care for themselves? For many people, just the not knowing what to do is overwhelming. Eventually, you muddle through somehow, since there are just so many things that cannot be planned or anticipated. That’s where support groups –both physical and online can be a boon. Just sounding off to someone who understands and is going through the same kinds of things as you can be so comforting. Even if, like me, you are not really a “self-help group” kind of person and have never done anything like that before.

There are so many variables. Every patient is different, every experience different, because every person is different. But there are some similarities. The earlier characteristics and personality that you know and love so well often change. Dramatically. People who were once gentle and calm become raging beasts with seemingly no thought for anyone else. Apathy and indifference are classic traits of FTD in the early stages but often there have been symptoms for years before anyone really notices that maybe something is not quite right.

Everyone in the Facebook group can tell you their story about driving, food issues (either too much or too little), incontinence, sleeping, screaming, aggression, apathy, crying, and a myriad of other things. Some people have all of these, some people have one or two. There are people in the group from every continent in the world. The variation in experiences is the one consistent thing, as oxymoronic as that sounds. What I can tell you from my own experience is that FTD is predictably unpredictable.

Medical professionals are often baffled, ignorant, condescending or arrogant about FTD. I know that because I am one. Until FTD touched my life, even as a nurse, dementia patients were largely an anathema to me. During and since FTD, I have a whole new perspective and respect for those of us who are touched (which is much too gentle a word for the bastard disease) by the group of dementias known as Frontotemporal Degeneration.

Our family and friends were touched by it too. People came into and went out of our lives. People stepped up, people stepped down. While all that was happening, our family soldiered on. Meeting every crisis head-on, battling every demon that crossed our path. It was overwhelming and infuriating. There seemed to be no-one who really understood. I think now that things are a little better. That there are people all over the world who get it. Awareness is blossoming and people whose lives are and have been affected by FTD are joining together and doing things. The media is finally waking up to us and many people are writing and communicating about the affect the FTD has had on their life and the lives of their families and friends. The governments of the world (even though they often lump us in with Alzheimer’s) are finally waking up to what has been described as a “tsunami” of mental degeneration in one form or another. There is action beginning, if only in a small way. It’s better than what was happening eight years ago when mine and my husband’s journey began. There were four people in the support group I first attended. Now, that group has swollen its ranks to around 100, which is both disturbing and comforting at the same time.

Dichotomies seem to be the order of the day. On the one hand, no-one wants to be in “the club”, but on the other, it is necessary to  commune with people who get it. Previously civil, calm gentle people turn into raging bulls. Raging bulls often turn into pleasant, tranquil people. It’s a mystery. What happens to all the FTD patients I have even know is that there is a strange kind of “Benjamin Button” effect that takes you and your loved one on a journey back through time, culminating in their infant-like dependence on a very exhausted you. FTD will most definitely take a toll on you and the relationships you have with other people, including your loved one. You will experience emotions that you have never felt before. You will do things you never thought possible.

“You can be as mad as a mad dog at the way things went. You could swear, curse the fates, but when it comes to the end, you have to let go.”

–Benjamin Button, The Curious Case of Benjamin Button

And there it is. You will do things you never thought possible. Just like I am now. Carrying on a life without the one person who was the center of my life for thirty-eight years. I am not a different person, but I am irrevocably changed as I have said before. As you battle FTD, as fearsome as an opponent it is, you will discover qualities that are in you that you have never seen before. They were there all the time, you just didn’t know. 

Now that I am writing again from a different perspective, I hope to bring you the power that comes from knowledge. Knowledge and acceptance are two powerful things for your arsenal. Acceptance is not merely giving in to the inevitable, it is seeing that “It is what it is” and forging ahead anyway. Acceptance is a tool that you can use to guide you through the many upsetting, infuriating, frustrating and sad things you will have to do every day. It is not just taking everything at face value and thinking it’s ok. It is questioning everything and realizing that there are some things you just cannot change. It’s not to say that new things shouldn’t be tried, or tips learned to help you deal with the everyday. The enormity of what you are doing is not always apparent while you are doing it.

You are weighed down with love. Love, and emotions like guilt, resentment, anger, sadness. They are heavy loads to carry. especially when you know that there is only one outcome to all your hard work and dedication. That’s when you realize that love is the thing that saw you through. Love is the life jacket that kept you afloat. People an be lifejackets too. You will find them. They will find you. They will present themselves, you just need to keep an eye out for them. They pop up in the strangest of places.

So, it’s good to be back in the FTD world. (What a weird thing to say!) Perhaps that’s what my purpose is –to use what I learned to ease the way of someone else. Sounds a bit airy-fairy, I know, but we’ll see how it goes. I lost the dearest thing to my heart, but the loss built something too. Resilience, battle scars, call it what you will. My husband would like that. He always said I was tougher than him. Maybe he was right.

Benjamin, we’re meant to lose the people we love. How else would we know they’re important t us?

–Mrs Maple, The Curious Case of Benjamin Button.

Or perhaps I am just using the “Benjamin Button” analogies to look at pictures of Brad Pitt? Hmmmm…………………

Benjamin Button

12 thoughts on “FTD – Hello, it’s been a while.

  1. I am interested that, even though you have done everything, lived with FTD, lost your husband to it, written about it and helped others come to terms with it, you find that you cannot walk away. Since my (very fit) father died in his nineties, I have been researching Far East prisoners of war who worked on the Thailand-Burma Railway. I have contemporary letters and first hand accounts, not only from my parents, but from about 70 very ordinary women to my mother. I feel it is my duty to get this story out there. I have a publisher and next year, in a sense, my job will be done. BUT I am already agreeing to give talks (something I dread), I am continuing to read about the cruelties and the deprivations (something I am longing to stop) and fielding questions from other children of Far East POWs. I suspect this will now be something I do for the rest of my life. I hope I have your fortitude.

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    1. It is funny that FTD still remains part of my life. perhaps it is that it still gives me a connection with my husband, other than the love I still have for him. I’m not sure, but hopefully it will mean that I can help some other people through their terrible fated journey. I am speaking at a fundraiser here in Phoenix for FTD at the beginning of October, but am actually looking forward to it, sharing our story in a humorous and informative way I hope. I am very interested in your POW story. My grandfather was a POW, although not in the Far East – in Italy and Germany. He always said that because he was one of the older soldiers (he was 29 when he went into the Army), he felt that thinking about his wife and two children back in England, waiting for him was the one thing that kept him hanging on until the Allies arrived.i look forward to seeing the final result! Do you self-publish or have a publisher/agent?

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  2. Hi Debbie.
    Good to see you are still around supporting those of us who are still on the journey, and god knows we need all the support we can get.
    I can understand what you mean about supporting people when you are through the other side, though that’s not something you want to dwell on when you are still loving and supporting your person. Someone asked me recently if I had thought about what I will do when this is over and do you know I didn’t have an answer. I can think about what I need to consider as he worsens, which is happening now; but I have cannot seem to think beyond that. I just still need to take it ‘one day at a time’.
    I have been writing too, It helps. Sometimes manically, and sometimes I don’t look at it for weeks. I am not sure it will ever see the light of day but I am doing it for me as it helps some way in letting off steam.
    I wrote to my husband’s consultant a few weeks ago, the one he has only seen once in almost 6 years. I tried to tell him how we felt at the time of diagnosis and how the FTD Support Group has helped and could he pass on their details to people just starting on the journey. I told him I would be happy to be a listening ear should there be other people in our position – and guess what? not a word, not even an acknowledgement from his secretary. So much for support.
    The support we really need are people like you and the people at my FTD support Group and the lovely lady Jill who is the co-ordinator. That way I feel I can hopefully support other people too.
    I am a great believer in fate and I think that we are given certain tasks which we can ignore, or embrace and I like to think that I will continue this journey into the future as you and some of the people at the support group do. No longer because they need the support but because they know others need it and they are there to give, they are the people who have trod this road before us.
    Keep up the good work Debbie
    Love to you and your family.
    Jo (From Colchester in Essex)

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    1. Thanks so much Jo. It;s great that, even in the throes of your FTD experience, you can separate yourself mentally sometimes and take a different perspective. I think that is the key to survival without going under. I too, believe that there is a path mapped out and this, it seems, is mine. I appreciate your support and wish you love and peace as you travel this path that we have been shown. Debbie.

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  3. So glad you are back. You get it. My husband is in the 8th year since the diagnosis, 3rd year of being in a facility and I am weary. Thanks for being back. I hear you. Pat Harper

    Sent from my iPhone

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  4. Always look forward to your contributions to FTD and am thankful and appreciative of your time and skill to help us with our loved ones who suffer with FTD. You help because you’ve walked & completed this awful unforgiving road.. We rely on your feedback more than you know. Gratitude – Margaret! Moved to the USA in 1998 from SA. Husband has PPA 7 yrs – have grand daughter Madison Paige nearly 10 : D. Read The Dance and applaud you for the good job!

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    1. Thank you so much, Margaret. What a coincidence that your granddaughter has the same name as mine! Our Madison Paige would have been four years old this year. Still one of the saddest moments of my life and tough to get around. Thank you so much for the feedback on my back. Am working on a few other things right now too. I appreciate the support. Hang in there!

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  5. Thank you for sharing your story. Reading your posts make my experience just that little bit easier. FTD is a bastard disease as you put it. Your honesty is refreshing aND much appreciated.

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