FTD – The cloak of Invisibility. Now you see me, now you don’t,

cloak of invisibility

Being invisible can have its advantages. You can get away with a lot of things if people can’t see you. Even if they can see you, being an invisible character in the story of life can be advantageous too. Middle-aged people are notoriously invisible. You see, they just don’t fit in with the beautiful people anymore. Wrinkles, sagging flesh, balding heads, droopy boobs and butts – well, they’re just not “de rigeur”. I find it amusing that in a crowded bar or club (which I don’t frequent that often these days), I become part of the decor. There, but not worthy of attention.

Screw that. I don’t care to be visible to the Kim K’s of the world anyway.

FTD is invisible. The only evidence of its presence is behavior. Behaviors that don’t conform to our well-ordered norms. Social morés dictate that most of the actions we see demonstrated by our FTD’ers will make them pariahs to all but the thickest-skinned observers. But when your FTD’er is behaving acceptably, they become invisible too. Another grey-hair in the midst of many.

FTD itself can only be seen by sophisticated technology. Even then, there’s no guarantee. Only after the bastard disease has completely decimated what remains of the person you have loved and cherished for so long can the damage be seen by those who make it their business to look. That’s the physical  damage of course. The damage that has been inflicted on everyone else around that lacy brain is immeasurable. Invisible. Felt only inside the hearts and souls of those that remain.

We remain, but we are also invisible. To everyone but those who are the very closest to us.

Invisible-man-007

The person who has FTD –your wife, husband, lover, friend, parent. They are invisible too. Or rather, the inner workings of their brain are. I firmly believe that there is, on some level, a degree of understanding within the FTD brain. A knowledge that they are here, but not with us. A certainty that they are, like unmanned boats, drifting away from their safe harbor. But, because it is invisible, there is no way to know. This must cause fear. I know it would scare me. Maybe that is what incites the behaviors. I know that the degeneration causes lack of insight and inhibition. I know that FTD takes over the brain like an invading army into an ill-prepared country. But the person? What about them? The very essence of what makes us – well, us. Do they scream for attention? Is that what we hear when we look at the OCD? The persistent stacking/folding/calling out in public/being rude?

Or am I giving them too much credit? Is it simply that FTD has destroyed so much that there is little left to cope? Does FTD destroy the soul? The essence of humanity? I know, such a lot of questions. Usually at this point in the article, I give you a list of possible solutions to your problems. A bulleted paragraph of pointers as to how to handle your life. Huh! Far be it from me to pontificate about your life. Only you are living it. I lived my own private despair and hope that I can share what I learned. Usually.

But today, I am more philosophical. Although that doesn’t really help you does it? How about if I share someone else’s words? A slice of how it was for someone who lived and died with FTD? Dr Bob Fay spoke at an Alzheimer’s conference in London in 2003. Here is an excerpt from his speech:

Pick’s is a sodder. It has changed me in subtle ways that outsiders find very difficult to understand, but are all too apparent to my wife and family, It has cut short my career as a General Practitioner; it has stopped me from driving; it has caused much grief and distress to my family. It has a name, but no known cause. It has a very unpredictable course, and it has no treatment. It’s a sodder, it’s a sodder, it’s a sodder. I am not seeking sympathy, but I hope that by conveying the truth about this disease, from my point of view, from the inside, you may be enabled to understand it better. Dementia has no dignity, no compensations: it continues day by day, year by year, to take and take and take, until death comes as a relief to all.

Dementia brings anxiety, anger and grieving to the sufferer. It may be bravely born, but it is not fun; it is not an acceptable alternative lifestyle. Our experience has been that in fact some psychiatrists, geriatricians and neurologists are fairly ignorant of some of the rare young-onset dementias like Pick’s, and if they have areas of ignorance in those conditions, then I suspect that most of the other health professionals who are involved with dementia sufferers, are similarly lacking in knowledge. That is quite understandable and I am not seeking to belittle, after all I was a GP only 8 years ago who was totally ignorant of any dementia that wasn’t Alzheimer’s.

Incidentally what a very unfriendly word “Dementia” is! Technically I must have been “dementing” for about 10 years. To me the term suggests INSANITY (and the dictionaries agree.) To be demented implies being frantic, overactive, out of one’s mind. I haven’t settled on a better term, but I usually either say I have Pick’s disease or that I have a degenerative brain disease. Sometimes I call myself “an old Dementonian” but then people think I’m claiming to have had an elitist education! I think the general public gets misled by the term dementia”.

You can read the rest of Dr.Bob’s talk at http://www.theatfd.org

Anyway. Invisibility. There’s no bulleted list I can write today. mainly because I don’t really know how to help you handle invisibility. I am invisible too, being a fifty-something person. I don’t have FTD (as far as I know). But I have had the misfortune to have seen the effects of the bastard disease on some of the brightest, most articulate and intelligent brains. Invisibly doing its dirty work, like a glass scalpel.

You can remove the cloak from yourself. You can make sure that the world sees what is happening. That is the only way that the bastard disease will ever be defeated. The sword and shields of love will help us. Love and a determination to make people sit up and listen. Become aware. They can ignore us. They can pretend we are invisible.

But we are here. As more diagnoses take place in our booming generation, as more people demand attention from governments, the CDC, society at large, people will want to know. We can tell them “We’ve been there, done that”. “What do you want to know?” “We’ve been waiting!”.

An invisible force. A veritable treasure chest of information. Resources that we are just beginning to realize are and will be necessary. That’s us.

Throw off the cloak. Speak up. Demand attention. Be visible and loud.

Together we are not invisible.

Minions

FTD –the Guilty Party

Let’s just get one thing straight. Guilt is not something people can tell you not to have. How the hell can you erase guilt? It’s an emotion over which you have no control.

“Don’t feel guilty about going for a manicure/taking some time for yourself/eating your dinner”

That’s all well and good, but one voice in your shoulder says “Yes! You deserve it!. Go ahead and do something for you for a change”. The other voice says “What? You’re doing something for yourself? Are you kidding me? You’re a caregiver, for God’s sake. What about him/her? Come on, you shouldn’t be doing that. You’ve got (substitute any caregiving task here) to do”.

Angel and devil

So clearly, telling you not to feel guilty isn’t going to work is it? One half of you wants to do what you want to do, because, well, you haven’t done that in a long, long time. The anger and resentment feeds  the part of you that needs, yes needs, something dammit. The other half, the rational side, wants you to do what you do for the other twenty-three hours a day/seven days a week. The stuff that you do for other people. Because let’s not kid ourselves here. You don’t just take care of your FTD’er. Oh no, you feel it necessary to take care of the rest of your family too. Granted if you have small children or teens, then you have to somehow figure out how to give them time and what they need too. But if you have no children or they are grown and gone, then they and your other relatives and friends need to figure out for themselves how they are handling this issue of FTD

Sure, you can help them to understand what is happening and help them to come to terms with it. But you can’t do it for them. They have to figure that out for themselves. That’s where the guilt comes in. You feel guilty about not being able to make it right for everyone else. You feel guilty that you can’t fix your husband/wife/friend/partner. You feel guilty -well, just because. There doesn’t need to be a reason. People can try to make you feel guilty. But actually only you can allow that to happen. You can explain till you’re blue in the face what’s going on. But at the end of the day, the guilt can either break you, or lead you to a way of thinking that will make you a little more free.

Accepting that the guilt belongs to someone else and not to you is a breakthrough. If you can reach that understanding, your life with FTD may be a little less fraught. A little less heavy. Because guilt certainly is a heavy burden, that’s for sure. It can make you yield to suggestions or actions that you don’t really think are right. But pressure from other people can do funny things to you. The heaviest pressure of all is from yourself. Your expectations of how you think you will manage the bastard disease will never come to fruition.

FTD is cunning and clever. It can give you delusions about your abilities. It can make you doubt yourself a thousand times a day. But guilt? Guilt is one of the jewels in the crown of the bastard disease. Jewel in the crown

FTD, while affecting the mind of your love one, will do its best to guilt you into becoming a cooperative partner in its dirty deeds. It will try to take your independent thoughts and replace them with FTD-centric ones. It will scream “Me, me!” and guilt you into not going to the wedding/party/spa/vacation. just so you can spend more time acceding to its every demand. It’s not your loved one making the demands, it’s the bastard disease.

I can now see how guilty I felt every minute of every day. Every time I enjoyed something my husband would have enjoyed. Every time I held our grandchildren. Every time I watched a movie that I know he would have liked, or laughed at or cried at. I felt guilty, but now I see it was because I was afraid. Afraid of what I knew was to come. Enjoying things without him, living without him.

Of all terminal diseases, FTD can be one of the most cruel. For so long, there seems to be little that has changed. Then one day, you have to remind someone how to put their pants on one leg at a time. You have to order their food in a restaurant because they can’t get their tongue around the words. You have to buy adult diapers for your 45-year old husband/wife. You have to hide the car keys. Guilt blossoms because you feel like it is you that is taking everything away. You that is depriving your loved one of whatever it is.

It’s not you. Just like the behaviors and the speech problems and the mobility issues are not your loved one, they are not you either. The bastard disease, while chipping away at the brain, likes to chip away at yours a little too. Whittling away at your resolve and strength. Piling on the guilt, as if it’s all your fault. Well I’m here to tell you that it’s not. Can you control guilty feelings? No. But maybe you can accept them. Maybe you can see them for what they really are. Feelings. Guilt is only one of a myriad of emotions that you are experiencing as you travel this FTD journey. I can’t tell you not to feel it. Even if I did, you couldn’t. But maybe you can keep it subdued. Maybe you can let other feelings override it a little. Feelings like pleasure, comfort, sadness, anger. It’s not easy.

I talk a good fight, but I felt guilt too. Guilt about “therapeutic fibs. Guilt about taking away the car keys, money and all kinds of independence which had become dangerous to my husband. Guilt about placing my husband in residential care. Guilt about going out to a nice dinner, or the theater or a trip. I couldn’t not feel it. But I found a way around it. A way that allowed me to say “I deserve it”. You do too. But no amount of me telling you that will work. You have to be able to tell yourself that. You do deserve it. Really.

 Spa

“The Dance” – a memoir of FTD

Today I am excited to announce that my book – “The Dance” is very close to its publication date. It has been a labor of love for the last two years. If you are dealing with FTD, our story is probably not that much different to yours, but I hope that it will throw some light on the topic of FTD for those who may not be familiar with the bastard disease.

It was a journey, that’s for sure. A rocky road of pain and heartache with a few laughs thrown in along the way. Well, more than a few actually.

I know my husband would be very proud of me for sharing our story with you. He was always my toughest critic, but in the nicest possible way. I am very proud of it too. Not just because it’s about us, but because the writing of it was so cathartic. Sometimes, the constant editing and rewriting seemed arduous. Re-reading such painful experiences was almost masochistic. I referred to the many journals I had kept over a five year period. Sometimes I even shocked myself with the things I had written and forgotten about.

I hadn’t forgotten about the pain of course. That’s still around. But I have a handle on it now. Can keep it subdued so it doesn’t come back and bite me in the ass, as it is wont to do. It still does sometimes though. When I’m driving and a song comes on that reminds me of him or a time we shared.

I have learned a lot in the last seven years. Everyone does of course. We have to learn in order to survive this mortal coil. I know I’ve learned one thing for sure –you never know enough.

Anyway, just wanted to share my news. I hope you will consider reading our story. It will be available on Amazon in paperback and a Kindle version very soon.

Thank you for following my blog, it means a lot to me that anyone is prepared to listen to my “tell-it-like-it-is” babbling. I appreciate your indulgence :)

frontcover

 

 

Resolution

Deborah Thelwell:

Stirring words. So true, so raw. Great job Jeremy Farmer – the Boy Poet!

Originally posted on The Boy Poet:

Resolution

Anger and rage burn,
burn inside, eating away at the senses
until common sense is all but forgotten
and flames ignite the pain of hurt feelings
lost feelings
alone
unwanted
as the thoughts invade
and words cut deeper than any knife.

Silence
as no words cut even deeper
irritating raw senses
like salt on an open wound
as thoughts imagine without evidence
the hand that embraced love
is holding another heart.

Yet senses calm in the serenity of time
equilibrium returns
and unvoiced thoughts wither in a kiss
a kiss
the strength that is love
enduring love
that survives disagreement.

© JG Farmer 2014

Form: Free Verse

Copyrighted.com Registered & Protected  0YZI-XNQT-K70S-OMQH

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FTD – Disrespectful in the Extreme

hand kissing

I have been reading and listening to those caregivers who are finding it so very difficult to relinquish the grasp on their long relationships. FTD certainly takes its toll on those.

It’s tough, I know. You live with someone for thirty, forty years and, if there is love, there is some degree of respect. Respect for the person. Not just the outer being that everyone sees, but for the true inner soul that you met, fell in love with and spent at least half of your life with. We have respect in varying degrees for a variety of people in our lives. Parents, teachers, any kind of authority. This is what we are taught if we have good parents and role models. At various points in our lives, we challenge the authority, but in general, we come back around to believing that anarchy just won’t work for us. You can be a hell-raiser for a while, but most people follow a path that holds other people in esteem and tolerates human frailties.

The respect within a loving couple –that indefinable desire to please and honor the other’s wishes and needs –that is a whole different ball game. It begins in the early stages of a relationship when you realize that this person likes you, loves you even, for exactly who you are. Not because they’re your mother, father, sister, brother etc. Not because they have to. Well, they kind of do if they’re your family -right?

This new person that you met, they like you because they think you’re funny, kind, generous, hot. Especially hot if you’re in the throes of teenager/early twenties-hood. Not that hot goes away, just gets replaced by an understanding that it’s not the most important thing. Anyway, respect. Respect is built over the years as you go through triumphs and tragedies together. It is founded on love, bolstered by familiarity and chipped away at sometimes by behavior.

holding hands

And there’s the rub. Once the behaviors of FTD kick in, that’s when the challenge begins. The respect you built over all those years is stood up to by FTD. The bastard disease is no respecter of anything really. Your love, your strength, your once-held firm beliefs that you could stand together and conquer anything.

FTD respects nothing. Not your heart, love, home or family. The respect that you hold so dear is now so severely tested that you will need to find new ways of holding on to those ideals and values that you have built over the years.

  • Stop trying to handle things the same way as you have all your life together. Your joint life is somewhat over. Face it. Your joint life, bank accounts, tax returns, trips, dinners. Joint anything is now so changed beyond recognition that you have to face up to the fact that you are doing this alone. You may have family and friends, but the two of you? That’s done.
  • There will be a time, in the early stages, when you can get your ducks in a row, have your loved one sign advance directives as to their wishes, get your other household affairs in order and so on. But as the bastard disease does its heinous work, you will start to notice that your loved one still thinks that they are capable of making those decisions with you. They’re not. Don’t kid yourself.
  • The decisions you make will be based on what they told you during those early stages. Those times when you sat and cried together about what was to come. Those times when you were in disbelief about the hand you had been dealt. The times when you respected your loved one’s opinions, choices and decisions. Because you always had.
  • The time comes when you have to use that knowledge to guide you through the middle and late stages. And that’s painful. Because you respect them. Or rather, you respect the person they once were and the decisions they did, or would have made. Painful because you don’t want to do it alone. But alone you are, and alone you will decide. You will respect what they wanted. I had a very supportive network around me, family, friends, coworkers, medical professionals. They all respected my decisions because I was very clear about what my husband and I wanted. But I still felt alone.
  • The one person you have always relied upon to support and guide you through life’s bumps can no longer help you. But you still respect them. You still need their input. It is very hard to put that aside and make the leap yourself.
  • Stop asking their permission. They can’t choose anymore. They will say no to just about everything – day care, home caregivers, travel plans, clothing and food choices. Sometimes it seems they say no just for the hell of it. So, don’t ask, tell.
  • Respect their dignity, humanity, personhood. But not their decisions. Five-year-old husbands or wives rarely make good choices for themselves. Drinking, driving, risky behaviors. Reserve the respect for the person you knew. the person you love, but not the choices they try to insist upon.
  • Stop second-guessing yourself. You’ll do the right thing. Good old FTD will make your loved one tell you you’re a bitch/bastard, you’re ugly, you don’t care, you’re having an affair, you’re withholding money/food/pleasure from them. They will spend your money, crash your car, upset the neighbors (who cares about that?). They might even try to divorce you, sell your house, grope a friend, try illegal drugs. They’re not them anymore remember? Don’t sweat it. The FTD would like you to give it everything and then some. It’s already taking everything you hold dear, so don’t give it respect, save that for your loved one’s pride and dignity.
  • Respect yourself. That’s one of the biggest accomplishments you can make in the FTD typhoon.

I respect that you are making this journey. I respect that each of us is unique, our situations similar but different. I respect the differences and make no judgment as to what is right for you. Respect yourself as a wife, husband, father, mother, partner,friend. Respect yourself as a human being with flaws and an identity. Respect your loved one as the focus of what you do but not what or who you are.

Respect yourself.

 

 

FTD observations – “Oh, THOSE people”

“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.

Angry-Red-Smiley-Wagging-Finger-107x107

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.

cookies and ice cram

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.

Blackadder-Confused-Look

June 2014 Update on the Efficacy of Non-Pharmacologic Interventions for Agitation in Dementia

Deborah Thelwell:

Interesting – just jump to the plain English version on page xvii as suggested. Maybe something to try?

Originally posted on Info & Resources for FTD Caregivers from Dr. Chow:

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.

Training staff…

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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.

FTD – How to fight like Manny Pacquiao

HopeThe 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.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.

 In the end

FTD & Resilience. Get your Nikes on!

Running shoes

You’ve heard me talk about strength, courage, pain and love in my articles here.

Resilience

 

 

 

…………………Now that’s something completely different.

Imagine you are in the middle of running a marathon. You didn’t have time to train for it, someone just called you and said “Hey, the marathon is tomorrow, you’re in!”

No training, no diet changes, no education, no building up for it.

The marathon that is caring for someone with FTD is a little like that. It can start pretty slowly, innocuously. And you think, hmm this isn’t so bad. You try to pace yourself. everything’s under control. You see the first few miles go by, stretch the legs a little, take a few sips of water. After about 5 miles, you’re into it now. Rhythm, pace, -you know you can do it!

Those first weeks, months, even years for some people with FTD can seem quite manageable. You get a little routine going. You are able to continue many of the things you did before the diagnosis and/or suspicion. Going out to dinner, visiting with friends. Trips, movies, all the good stuff that life is all about.

Then, around mile 18 (or so I’ve heard) you hit what is commonly known amongst runners as “The Wall”.wall

The wall is a fearsome thing indeed. The wall in FTD comes around the middle stages.That time when your loved one begins to metamorphose into someone you don’t know. Then the race really begins.

running gif

You have barely got used to the very fact that something is different and changes will be coming, when bam! Here they are. The changes. The mood swings, the irrationality, the anti-social behavior and well, frankly, the meanness. Then all you want to do is run away. FTD is most definitely not a sprint, its a marathon.  A marathon you haven’t trained for. A marathon with no medal at the end. Sometimes you will have a team with you, other times you will be solo. Most of the time, you will be running alone. Coping with this requires the resilience of a marathon runner for sure.

Resilience is one of those spirits contained within humanity that helps us to endure pain, torture, loss and grief. Resilience is what has helped humans survive for millions of years. You CAN endure. You can and will overcome. I know, I’ve done it. You have what it takes contained within you. It’s all trained and ready to go. There’s no manual. No neat set of instructions. You know your loved one better than anyone. You know what they need. You know what you can give. And just when you think you can’t give any more, you will find a reserve within you that will help you go on.

Resilience. It helps the millions of marathon runners cross that finish line all the time. In the FTD world, the finish line is not one we really want to reach. We don’t want to get to that banner across the street that tells us it’s over. As painful as the race is, we don’t want it to be over.

Benjamin Franklin (not a man who ran many marathons) said:

“I didn’t fail the test – I just found 100 ways to do it wrong”

Your test, your assignment, (should you choose to accept it) is to run your marathon with the heart of a lion, the stealth of a tiger and the resilience of Nelson Mandela. Now there was a man who knew about resilience.  Your life as you knew it is changed forever, just as Nelson’s was. Acceptance is not the same as giving up. Accepting the results of FTD is not giving in to it. Accepting is not resignation. Acceptance is a tool that will help you win through, one battle at a time. One wall at a time. The finish line will eventually be in sight.

The banner across the road will read “Finish”. You will not receive a medal. But you will have the satisfaction of knowing that you did everything you could to carry you and your loved one across that line. Everything you could, despite the blisters in your heart, the pain in your soul and the sweat on your brow.

Medal of the heartHere is a medal for everyone who is caring for Frontotemporal Degeneration right now. I commend your bravery, your love and your resilience.