FTD – Painting, Execution and Dragons – what a combo!


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 look 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.

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.


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