As we round off this week, I have been gratified to see the growing support that seems to be occurring all over the world. It seems that our voices are beginning to be heard and advocates are popping up all over the place! Hooray!

Of course our biggest advocate and voice is that of the Association for Frontotemporal Degeneration -the AFTD. I was privileged this week to talk to some of the wonderful people there and hope to be working with them very soon.

Amidst all the clamor of publicity and as much as we all want the word to be out there, there is great competition. Competition from other, equally devastating conditions to those who are forced to endure them. We cannot forget those causes either. But those of us who have been touched – no, assaulted by FTD know that we will not rest, despite the compassion we have for everything else going on, until treatment and eventually a cure is found.

Personally, I want to thank my local peeps for organizing two Food For Thought events in the Phoenix area – Cheryl Johnson and Kathy Ritchie, who both lost beautiful, bright, intelligent loved ones to FTD. These two women are carrying on their fight with love, honor and loyalty and I salute them both.

The last word of this momentous week goes to those people for whom the fight is personal. Those people who are doing everything within their power to raise awareness, provide relief and bring some light into the dark days for their fellow FTD’ers. This video was made by the AFTD to demonstrate the wonderful work going on by those people.

Thank you for all your support and generosity this week and always.


I was wondering how I could bring another picture of Brad Pitt into my post this week,but I could not find a connection with which to do that – say, of Brad Pitt painting. Oh well.

Since moving back into our family home in March, there has been much remodeling, painting, construction (oh, the dust!) and moving things around.  I am finally getting to the end (well, not just I.  I had help of course. Thank you Tim and Chris). Anyway, I am getting towards the end (does it ever end?) and am now working on the laundry room, new windows and replacing the patio roof. Good grief! when is she going to get to the part about FTD, I hear you ask. Be patient, my friends.

During the renovations, the painting was all done by Tim, a much more expert person than I. Tim worked tirelessly on our our house for many weeks, painting, sawing, filling, sealing, building, plumbing and wiring, until we arrived at an extremely livable state, where I have been very happy to finally relax a little. The laundry room, however, was the final resting place for many things that had made their way from all the other rooms. One by one, as we cleared, cleaned and rearranged, the rooms became organized and comfortable. The laundry room became the repository for all things that had nowhere else to go. So this week came the day of reckoning. Time to clear it out and paint. It’s a small room, so I decided I would do it myself. And there begins my FTD tale for this week.

Throughout our 36-year marriage, I have always been the DIY-er. The fixer of things, the painter, the floor sander, the tiler. I loved to do it. My husband hated it, so it worked well. This week, as I began to spackle, sand and paint, my mind went back to those times when we had embarked on various projects over the years. Me up a ladder, him coming into the room periodically to check on progress. Always the backseat decorator, he would pass comments like “You’ve missed a bit over there”, or “I’m not sure I like that color”, or even “that doesn’t look very good”. Very inspiring as you can imagine. Sometimes it would just be a kook of disapproval. As anyone who decorates knows, you can’t make an omelet without breaking eggs, as they say. So, until the project is finished, for some people without vision it’s hard to see how good it will be. But he was always pleased with the results and would tell me he didn’t know why he doubted my judgment or ideas, because it aways turned out alright in the end.


The last time we painted anything together was in 2005, two years before his diagnosis. We had just moved back to the house after living in California for a while. We spent six weeks going from room to room, painting and repairing. Once it was done, there was a great feeling of satisfaction and we enjoyed the house immensely once more. As I was up the ladder painting in the laundry room this week,(oh, all those nooks, crannies and pipes!) the memories came flooding back. The ceiling turned out a little patchy, and I could imagine him standing there, looking up and saying  “That’s going to need another coat”.

One memory I have of that room is from a night in 2011, four years after diagnosis and the year before Alan died. He was into the later stages of his FTD and about to start going to adult day care, since he could no longer stay at home safely alone during the day. My sister-in-law, Susan, was visiting and we were all about to turn in for the night, around 11pm. Suddenly there was a loud, gushing sound from the laundry room. we rushed in to find that a water pipe has burst and there was gallons of water pouring into the small room. burstpipe2Susan and I, being the practical nurses that we are, immediately went into “damage control” mode, catching the water and tipping it into the nearby washing machine. Alan stood there, watching. His FTD meant that his executive function was almost entirely broken. He was unable to figure out how to help. We asked him to go and fetch more buckets, bowls etc from the kitchen, but he was unable to follow the commands. He shrugged and went off to bed. And so, Susan and I stood there up to our ankles in water, baling the never-ending stream into the washer. I’m sure it was an hilarious picture, but at the time of course, it was not funny at all.


Eventually, I broke off from baling to look for the shut-off valve, an unsuccessful venture.So I called a plumber and all was resolved.

Alan’s apathy, lack of urgency and total lack of understanding of the situation is one to which I am sure many of you can relate. One time, also in 2011, when our air conditioning decided to take a break, we had to sleep and live in our adjoining guest suite for several days until it was fixed. The room had an separate AC unit so, being July in Arizona, we luckily had a place to go to get away from the stifling heat in the rest of our house. We could watch eat, sleep, shower, watch TV and go in and out through a separate entrance without too much bother. Anyone without FTD would have found it an inconvenience, but for Alan, it was baffling and upsetting. He would keep going back into the main part of the house to wander, as he did all the time, and come back pouring in sweat. He could not understand why he could not pace the house like he always did. It was his habit to just wander the house, checking in all the rooms (I have no idea for what) and returning to wherever I was to make sure I was still there too. He would come back into the room we were staying and indicate (his speech was pretty much gone by this time) that it was really hot in the house. He would get up in the night to go and look in the house, then come back to bed and go right back to sleep.

This dysfunctional behavior is classic  in FTD. Things disappear – the “start” button often doesn’t work for example. The person cannot initiate actions, such as in the example above of not being able to fetch a bucket. The other side of the coin is that some behaviors cannot be stopped, because that “button” is broken too. The inability to end an action can result in OCD-type behaviors such as pacing, drawer-opening and closing, repetitive questioning or word salad. Some of my husband’s dysfunction included being unable to discontinue habits that had been formed over a long time, such as cleaning the pool. He continued his habit time-wise, day of the week, time of the day etc., but would not complete the task. So the pool was never really clean and the backwash would be left on all night so that the pool was almost empty in the morning. It is apparent once this inability to complete tasks develops that the person cannot be left alone, since danger could soon be around the corner. This could manifest itself in things like leaving stove tops burning, leaving faucets running, leaving a car running in a closed garage, crossing a street without looking.

You now have to think of your adult child as someone who can no longer make appropriate decisions for safety. This can be very difficult, since you are trying to maintain independence and dignity for as long as possible. You respect and love your spouse/child/parent/friend and would never do anything that would humiliate or shame them. But there does come a time when you absolutely have to draw the line. As painful as that is, and as much protest as you may encounter from your loved one, it is vital that you make the parameters and don’t compromise anyone’s safety or well-being. Driving, being responsible for taking medications, using tools or weapons. Ask yourself if you would you let your five-year old do any of these things. It is one of the hardest things to accept that you now have sole responsibility for the actions of a mentally disabled person. It’s not what you signed up for, I get it. Your FTD’er doesn’t like it either and they will be sure to let you know that. Loss of independence is for an adult, one of the most difficult things to endure. In FTD, it unfortunately often comes when the person is still somewhat cognizant of what is happening. The lack of execution is not mirrored by their lack of desire until much later in the disease. Life becomes a constant battle and, although compromise seems like it may be a solution, the apathy and lack of insight makes this almost impossible. Because FTD blocks the ability to learn, and compromise is all about making concessions, your loved one may agree to the “new” way of doing something, but it seems that they will always feel that they have given something up and that you are getting your way all the time. As my husband once famously remarked to my brother -in-law on the phone “She thinks she rules the f**king world” !evilqueenBut at that point, I actually did rule his world.  And that’s what you have to be and do. The queen/king who rules their world. Paint a picture, say how it’s going to be  and live it. It’s not what you imagined your marriage, or parenthood or friendship would be like, I’m sure.  But it is what it is. Your FTD world has to become one of armor, drawbridges and ruling with an iron fist. It’s horrible. Being a dictator when you were once part of a partnership, a democracy, is not easy. It’s heartbreaking and soul-destroying. It moves you to tears and you weep for all you have lost, all that you will never have. Your strength will be drawn I hope,  from others like me who have gone before you. Those of us who have faced the dragon of FTD with swords of spirit and shields of love. We could not slay the beast, but we gave it a damn good run for its money. Someday, the beast will be slain, and it will be because of you and me, who watched and fought and cared.

The patron saint of my country is St. GeorgeGeorge and Dragon. His day is celebrated on April 23rd.

George slayed the dragon who was preventing a city from accessing a water source upon which they depended. (You can read the full story here ) St. George was fearless in his defense, just as you have to be. I know that sometimes you want to give up, to make it all go away and not have to deal with stupid FTD anymore. But don’t martyr yourself  as St.George did. You are you. You were once part of a partnership, or a friendship, or a family and that has been taken away by the bastard disease. There is no right answer. Your fight is not mine or anyone else’s. But you will get through and win a victory of sorts. You will win and not let FTD take two souls instead of one. You will win because you understand that champions sometimes have to take one for the team. You will carry your team mate in the painted memories in your head forever.

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.


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


This enlightening blog is written by Cindy Odell. Cindy has FTD.

Cindy writes thoughtfully and honestly about her diagnosis, her life and her frustration as FTD slowly dissolves everything in her life. I am so in awe of her spirit and determination not to let the bastard disease off lightly. I am also saddened that such bright, articulate and intelligent men and women like Cindy are so cruelly struck down by FTD. 

I admire the fact that Cindy is able to articulate her ups and downs. She fights with every word she writes. Cindy has courage, tenacity and retains a good sense of humor too!

The human spirit is stronger than anything that can happen to it.

                                        — C.C Scott

With FTD, there are no flowers, no accolades, no prizes.

But the human spirit blooms proudly, despite what FTD tries to do.

Beautiful strength

FTD – Friends, Truth and Disconnection.


One of the hardest things for the caregiver of a person with FTD has to handle is the withdrawal of friends and family from the day-to-day happenings in your world.

“My best friend who does call me or I call him several times a day is the only one and he doesn’t want to come here cause he doesn’t like seeing Peg the way she is. So hurts sometimes”.

– James, caring for his wife.

It’s not enough that you are living in an environment of silence, anger, pain and downright belligerence at times, but you also have to suffer the “slings and arrows of outrageous fortune” . To “take arms against a sea of troubles” is more than you can bear to do. Putting this into perspective (and in non-Shakespearean language to which we can all relate!) – you don’t have the energy or the time to persuade, cajole or help other people to come and see someone they have previously professed to love and respect.

What’s more is that, not only do friends sometimes abandon your loved one, they abandon you too. It’s sad and painful.

“I don’t blame those that distance themselves. Not sure how I would handle it if the roles were reversed. This disease makes people very uncomfortable”.

– Roger, caring for his wife.

You will get through the most harrowing experience of your life with or without them. And there will come a time, much later, when it will no longer be important. They have their own stuff going on. Their own problems, their own domestic issues. Their own fears and failures. I don’t think that makes it alright that they abandoned you in your time of need, but bitterness is a useless emotion. Revenge is not sweet.

Shield maiden

You will attain a plateau of indifference. Not that you don’t love them as friends anymore, but afterwards, the shield that you built to protect yourself from the “slings and arrows” of FTD will also protect you against the absence of something that was not as robust as you may have thought anyway.

“I think if we can help people overcome their fears, let them know it’s okay to feel awkward, say something stupid, stutter or act like an idiot, at least it’s interaction, and maybe the next time won’t be quite so awkward. Of course everything makes more sense in hindsight, and it’s nearly impossible to change other people. So even though I’m pretty sure I know why they do it, I’m not sure the change will ever happen if we leave them to their own devices.

– Rip, caregiver to a loved one with FTD

Rip is right, you have to let them know it’s ok. Whatever level of support they can offer. If that’s an occasional phone call, then let that be ok. If that’s dropping you from a circle of friends completely, then let that be ok too. You’re in control only of you. The most oft-used saying in the FTD world is:

“It is what it is”

That is never more true than in every FTD day. And so, the friendless situation is the same. You’re not friendless. It just feels that way sometimes. What it is is different. Different people that you have come to know, those who get it. The ones who are going through the same things as you. Not exactly the same, but relatable experiences. Different daily routines, different perspective. Those things that you always took for granted are different now. Like friends and conversation. It’s like starting a new job. everyone seems strange at first, but familiarity ensues and you make friends with people that you never would have found if it wasn’t for FTD.

It has to be said that friends can also be your rocks, your place of retreat. Those that stick around and hold your hand – physically or metaphorically, can do it from next door or thousands of miles away. They will take your call or tears at any time. One lesson I learned from my experience with FTD was that the people who were around just took to the situation without any request or discussion. They just did it. They behaved no differently towards my husband, treated him with respect and love just as they always had. They still do, even now he’s gone. He had less-than-perfect behaviors even before the FTD and they knew that. We all did. We all do. There’s the rub. We all do. None of us have perfect characteristics or behaviors, with or without FTD. Some people are just “not comfortable” with those things that lie outside social norms.

If I’m honest, maybe I was not either before my run-in with the bastard disease. Maybe I was less than tolerant of the frailties of others. Even without the presence of a terminal, devastating illness, my own behavior could have been better. It probably still could at times. I am laughing right now as I write. Since the FTD circus left town and I said my last goodbye, I have become much more introspective. FTD took almost everything from me, but in fairness, it gave me some things too. I learned more patience, tolerance and how much love I had inside me. I also learned how to not think less of people who are not like me. A hard lesson and a humbling one.

Now, I view friendships and relationships much differently. Or even indifferently. Not for what they bring to me, but for what bring to them. I am working on taking things a lot less personally and trying to see things from a more objective point. Although, in contradiction to this, my own defiance and defensiveness were the very things that helped me fight for what was right for my husband, so they did come in handy there. I had a very strong shield. The shield was reinforced by the love and support I received from the people who did stick around.

So, to quote the song “You gotta have friends”. You really do. They just might not be the ones you expect.  Lending a hand comes in many forms.

friend hand



FTD – Only the Lonely Know The Way I Feel Tonight

“I have lost the one person with whom I could share everything. I still talk to him like he understands but he just looks at me. Lonely doesn’t begin to describe this feeling. My biggest fear is that I have not cultivated enough close friends to sustain me when he is physically gone. There will be a lot of empty hours to fill” – Christina, caregiver to her husband.

These are the words of someone who is caring for a person with FTD. Sometimes, when you get caught up in the day-to-day life of a caregiver, you lose sight of yourself and reality.

Dealing with constant observation and supervision, food fights, diaper changes and walks keep one busy. Akin to the life of the parent of a toddler, one often yearns for a little peace and quiet. But after all that, after the night comes and calm is present for a short while, the pain of not having your partner to bounce the day off sets in.

Wanting to take advantage of time when you are not needed to guide what can often seem like a military exercise is natural of course. A little time to yourself, quiet time to just sit and do nothing seem like a pipe dream. But when it happens, you don’t really want it. All you want is to have those times back when you sat and talked About nothing, about everything. You just want it back.

“Conversation, I think that is worst. I spend all day talking to someone who never answers me back. Or seems to understand what I’m saying. And then when I do get her to bed and have my quiet time is when it sets in. Oh well the life of FTD” – James, caregiver to his wife, Peggy.

The quiet brings different feelings too. Pain, anger, sadness. Left to your own devices, you begin to dwell on how things might be different if it weren’t for the damn FTD. Conversations about your day, your work, your kids, your friends. The vacation you’re planning, the honey-do list.

Fear and dread overwhelm you. Fear of what you know is to come. Dreading the end result of this bastard disease. But still you endure. Still you go on, because – well, what else can you do? This mission that you have accepted has no defined beginning or end. It just morphs into a total disruption of your life. Eats up your love like an insatiable demon and forces you to think of the unimaginable.

“I’m always torn between being grateful for the peace and quiet so I can relax from the responsibility/demands for a bit, then the lonely crawls in and takes over.” – Lynn, caregiver to her husband, Len.

Guilt can be a powerful emotion during these times. You long for the times when you felt “happy”. Remember those? Happy is hard to define until you don’t feel it any more. Then you know. You know exactly what is is once its gone. And if you do happen to have a smiley moment, the guilt will jump up and slap you in the face. “How dare you feel anything but duty, loyalty and subservience at this time?”  Laughing? Don’t you dare! The FTD guilt police will be after you!

All the negative emotions you feel – guilt, loneliness, emptiness, are far surpassed by what you are achieving every day as someone who fights this evil disease. Yes, you’re fighting. You know you can’t win, but you will give it a good run for it’s money. Being alone when you are with someone is absolutely soul-destroying. A form of torture in my opinion.

“That was my worst feeling. Being lonely even though my husband was right there.” -Michelle, caregiver for her husband.

Even commenting on something you are watching on TV, or see in the street returns little to no intelligible or understandable response. It’s like solitary confinement, except you are allowed to go out. Those little private jokes you shared belong only to you now.  Even menial things around the house can become a trigger for loneliness. The chores that your other half always did suddenly don’t seem to get done anymore. It takes you a while to notice, but one day, the plants in the yard are all dead, the pool isn’t cleaned, or the laundry isn’t done, or you have no dinner when you get home. It comes as quite a shock, that they don’t remember how to do those things anymore.  It’s not important to them. Not as important as where (and when) their next meal/snack is coming from, or where their money is. How did that happen? Their ability to think of anyone but themselves drives your loneliness. As they withdraw into their FTD world, so do you into yours. You have no choice.

‘The other night our dog started barking. I had to wake up Ian to tell him I thought someone was outside. He ever so slowly got dressed, went to the toilet then strolled out and then asked me what I wanted him to do? I sat alone crying because it made me realise how truly ‘on my own’ I am now.”  – Vicki, caregiver for her husband, Ian.

I know that you know all this if you are or have been a caregiver of someone with FTD. I don’t have any magic answers, but I do have the advantage of hindsight. Although I can’t tell you how not to feel, I can tell you that with each phase and stage of FTD, as your loved one’s behavior and level of withdrawal changes, so will your resilience. Your strength will come from those of us who have gone before you and survived. Think of it as a marathon, with some runners just finishing and some just beginning. You will get to the finish line in the end. It’s not the end you want, but it is an end. You will handle the cramps and blisters along the way, because you are travelling with someone you love and they need you to help them reach the finish line. If you don’t love them, then I admire you even more, because this is not a journey for sissies. This marathon is only for the stout of heart and those with levels of determination that would defy gravity.

The loneliness of the long-distance runner cannot be underestimated. Take heart from the people on the sidelines, cheering you on. They may be people you know, or total strangers, but they are there, waving their flags and handing out cups of water.

As you escape into your quiet world tonight, when the tumult of the day has finally fallen into a calmer place, close your eyes, breathe deeply and exhale the loneliness. Feel it leaving your body and just enjoy the peace. For tomorrow will bring new challenges, new belligerence, new meanness.

You can do it. I know you can.



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…..