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. Susan 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” !But 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. George. 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.