FTD – The Empty Chair

empty chair

Back from a wonderful vacation, I am sitting here this morning, reading my email, checking my bank account, generally loafing around drinking coffee. I came across several new posts on a Facebook Support group page of which I am a member. The sadness, anger, grief and frustration reminds me of what once was for us and also how thankful I am that part of my life is over. I also noticed that since I joined the group over three years ago, the numbers have risen from a little over 400 to more than 2000 today.

The same issues and questions arise on a weekly basis – “my husband keeps escaping at night”, “my wife uses the ‘F’ word frequently in public”, “my mother does not acknowledge my new baby”, “how do I get my loved one to eat anything but Cheerios?”. It is tempting to comment about how the issue has been discussed previously in the group, but these “new” people don’t know that. They are caught in the maelstrom of just trying to get through every day. Fighting against apathy, fury, cursing, incontinence and constant pacing. It is hard to see outside of your cage when every fiber of your being is just focused on keeping everyone safe and surviving with your own sanity intact. The endless days morph into one long purgatory, all while watching your previous life disappear.

I conjure up in my head, some way to consolidate all the things we know. All the tips and tricks that the ingenious care partners come up with every day, in order to make their lives a little easier. To maintain independence and dignity for their loved ones as long as possible and to maintain comfort and safety, health and wellness for all concerned. It would be a mammoth task and would take someone far wiser and knowledgeable than me to write. I am not a clinical expert, nor did I face many of those challenges on my own journey with my husband. since every FTD patient’s path is different. It would be difficult to have the perfect guide. There are many, many tomes out there that talk about “dementia care” and “caregiving”. I have read some of them, but often find them a little patronizing and authoritative. I think what’s needed is practical advice for sure, but also incorporate the humor, humility and understanding of the sadness that accompanies taking care of someone you love.

I think that perhaps I would be a little reluctant to even take on this huge task because 1) there is a potential for rejection (I am only human after all ha ha!) and 2) I cannot even come close to pretending to know even one-quarter of what there is to know about FTD. So I guess I would really need to know from all of you, what would be the most helpful? Most caregivers have little time to sit and read a book or watch a video, so how can this information be best communicated? Quick-read lists? Page-a-day bullet points? I would love to know.

It occurs to me that in the three years since I started talking to these wonderful people in the FTD world, little has changed. Much has been discovered about the condition and physiology of FTD, but nothing about how we can treat or even cure it. Progress is slow indeed. So the focus needs to be on education and awareness, on talking endlessly about FTD and its effects. Susan Suchan, a courageous woman who is diagnosed with FTD and early Alzheimer’s disease, fights the good fight on a daily basis. She puts herself out there, faces her demons and talks openly about what her life is like with her constant companion, the bastard disease. I can only aspire to the level of strength and dignity she shows us.


My vacation was tinged with more than a little sadness. I traveled with my husband’s younger brother David, and his wife Lydia. We have a very close relationship, both before, during and after FTD slapped us in the face. Throughout the trip, I was very aware several times of the empty chair that was usually present at the table where we were enjoying drinks, a meal, or  show. Just laughing together as we always have. Tables are usually set for even numbers of people. Since there were three of us, or five if we were joined by another couple, I was acutely aware of the space where my husband would have been. I’m pretty sure David felt it a couple of times too. The four of us always had such great times together, it would be hard not to. It didn’t spoil the trip, we still had fun and laughed a lot. It made me smile that we carried him to that place in our hearts and included him in our conversation and jokes. People we met always asked where he (my husband) was, assuming I was separated or divorced until we explained our relationship.

Since I returned, I have reflected on the comments and responses I received from those people. They meant well of course. Sympathy and smiles usually. When I jumped back onto Facebook this morning and read the anguish and pain of those still in the trenches of FTD, I realized that sharing our journey is more important than ever. Sharing the frustration and hurt so that others understand, even though I still don’t. Of course, on vacation, that is not what people want to hear. They smile and nod politely when you explain that your husband died. I did not share the causes or reasons: or at least, I did not go into great detail –they don’t really want to know. Neither would I in their situation. But the experience reinforces that we exclusive FTD club members have to look to ourselves for support and help.

Hence the desire to produce some kind of tangible assistance. We say that if you have met one person with FTD, you have met one person with FTD. The uniqueness and singularly different behaviors, conditions and attitudes means that there can never be a one-size-fits-all solution. Even in the heady, hoped-for days to come when there will be a cure, or at least some kind of treatment, it will never fit everyone. Our unique human DNA means that no single solution will help everyone. So, right now, the best we can hope for is better understanding and awareness, and better resources with which to manage the daily horrors and heartfelt misery which sometimes, often — engulfs the FTD caregiver.

I feel so very thankful and fortunate that I can take vacations and generally enjoy life, different though it is from how I thought it would be.

AZStateCapitol

Yesterday, Sunday June 12, I had the honor of speaking at an event at our State Capitol building. An Awareness vigil to bring FTD to the forefront as we are part of the “tsunami” of dementia – Alzheimer’s, FTD, CBD and all the other sub-types. Our Governor has declared June 2016 as “Alzheimer’s Awareness month” in Arizona. The Capitol building will be lit up in purple for the whole month. Hopefully, this will be an annual event. Governor Ducey made an official Declaration to that effect. The Mayor of Tempe, Mark Mitchell,  has declared his city as a “dementia-friendly community”. Progress indeed. As different as we know FTD is to Alzheimer’s for many reasons, we are such a small number, relatively speaking, that the only way we can bring attention to ourselves is to be a part of a much bigger effort to combat all types of dementia – young and older-onset. We FTD people can be a little precious sometimes about our sub-type. “It’s not like other dementias”, which is definitely true. However, we cannot isolate ourselves from the potential publicity, funding and general awareness that must surely come. I plan to keep moving forward with that goal in mind, always aware that the empty chair is the one that will bring me the most power and the courage to speak out.

The empty chair needs to be filled with love and understanding in honor of our loved ones’ fight against the bastard disease and others like it. Awareness is everything. The behaviors and challenges that arise from dementia seem insurmountable at times. Overwhelming for those who are constantly struggling to keep it together -raise children, care for aging parents, hold down full-time work, pay bills, hold on to their own sanity. Feeling the burn from family members and friends who desert you can be the ultimate insult. Shunning by members of a less-than-educated society can make the isolation one feels even worse.

So what if someone points at you in a restaurant? So what if someone is speaking louder than is usually considered appropriate? Hell, people without dementia do that all the time! People chat loudly on their cell phone in public like they were in their own house, even at the movie theater. FTD’s childlike behavior is regarded with uncomfortable sideways glances, table manners suddenly become the focus in public -like everyone eats with etiquette anyway these days. It can seem as though every little foible that develops from FTD is a reason for others to regard someone as inferior. Caregivers have to develop a pretty thick skin to ignore that. The shame and embarrassment of public outbursts, incontinence or inappropriate behavior is constant. Let them stare. let them tut-tut. Let them sit in your chair for a day. Then let them tell you how they “had no idea!” That they did not understand what you are dealing with on a daily basis. Then and only then do they even come close to having a right to an opinion.

I would swap the empty chair at my table for being able to stand proud and give rebuttals to remarks or just give an onlooker “the look”. You know, the look you used to give your kids when they were about to start doing something in public that they shouldn’t.

The empty chair at my table is reserved for those with understanding, empathy and love. It is not for the faint-hearted, not for the weak.  It is built  with strength to love and support those who go on, fighting every day for awareness and understanding, for resources and education. Many people sit in the chair. They can never replace the one who left it, to whom it will always belong, but the new people who briefly sit there bring me hope and strength.

The keynote speaker at our Awareness vigil yesterday spoke of the statistics and data surrounding dementia; of the sheer numbers of people who will be affected by dementia in the years to come.  Those diagnosed and those who will care for them. Shouting about it now may help to deal with it all, but we have to do it now. This is not something that can wait. It’s here, it’s already started. Without adequate resources for care, entire families will succumb to hardship. We cannot let that happen. I for one will use my knowledge and strength to raise the banner of awareness. To quote Maya Angelou,  I hope I can –

Be a rainbow in someone else’s cloud

Rainbow cloud 3

Put Your Dukes Up! Put ‘Em Up, Put ‘Em Up! Five Strategies for Fighting the Good Fight When FTD is Your Opponent

Put Em Up 21. People. As in any fight, it takes a team. It’s hard work. Not only being a caregiver, but getting used to all the new things that your loved one will be doing, saying and acting out. You need a team of great people who love you and them for what you are. Warts and all. Not some fair-weather friend who flakes on you at the last minute. You and your FTD’er need a reliable group of people who will absorb you and do whatever it takes to make life run as smoothly as possible. Friends, sitters, doctors, nurses, social workers, attorneys, family, support groups. The more people you can get in your corner the better. Because there will be many, many rough days.

2. Patience. Even if you don’t have to deal with anger, aggression, violence or verbal abuse, you may (probably) have wandering, getting lost, incontinence, pure stubbornness, inappropriate social behaviors and garbled speech or total silence to deal with. Or a combination of any or all of the above.  You may not usually be the most patient person in the world. (I’m definitely not). It may take an act of supreme strength to hone the skill until  you can be entirely selfless and do what needs to be done. And then you can’t feel like a martyr.

3. Flexibility. To handle everything that is happening to you both. Go with the flow. Accept the inevitable. We’ve talked about this before. Pick your battles. Don’t waste your energy fighting “IT”. You can’t fight FTD per se. No matter how much you believe in mind over matter. It doesn’t matter to FTD what you have in mind. Being flexible will help you deal with everyday changes. Your routine may only last a few days before you have to change it again. Or it may last months. Who knows. You just have to be able to change your plans without notice.

4. Humor.  A highly developed sense of one too. You will see the honor in the most horrible situations. Macabre almost. Sick even. Sometimes things are so ridiculously outrageous you just have to laugh. At yourself. At the things FTD makes your loved one do. At the reactions you get from people who are so wrapped up in their own “Glee-like” dramas. Humor in unpleasant things. Humor in things you’ve never even considered before.  Ignoring that your house needs cleaning when it looks like a tornado went through. Even your kids didn’t make this much mess. And being ok with that. Or conversely, having to tell your loved one “I live here too you know!” when they are obsessively cleaning and tidying behind you everywhere. Humor in going to buy a bicycle pump even when you know he isn’t going to ride the bike anymore. But doing it anyway.

5. Love. Always love. Love the harsh words and sounds. Love the seemingly unloving behavior. Love what is left of them. Love yourself. Love the treasured memories.

Love every minute until there are no minutes left. Ding! Ding! Go to your corner please.

Never let your guard down. Ok I suppose that’s six strategies. But I mean it. Just because you have known and loved someone for forty years, does not mean they will not turn on you. It’s not ‘them’ anymore remember?

Put up your dukes and fight the good fight. Not physically. Metaphorically. Heroically. Fight for them. Fight for you. Give it your best shot. It will make you feel better. And get your team onboard too.

FTD is a fearsome contender. Advocacy is a fantastic defense.

But don’t make yourself your own worst enemy. Go with the flow. Relax.

Love! Love! Love! It will be over sooner than you would like.

Boxing gloves

That’s the old one-two. The sucker punch.

You want it to be over. Ding! Ding!

But wait, you don’t want it to be over.

Over is painful in a different way.

Caught in possession of FTD – Objets d’alan

Wish in a bottle Stuff, possessions, belongings, things – shiny objects.

Clothes, jewelry, books, papers. Treasured pictures of a lifelong hero.

Stupid stuff like a tatty old messenger bag.

A Target tee shirt – no value but one of the last things he wore.

No intrinsic value.

What has value now?

Family – children, grandchildren, brothers and sisters.

Friends – old and new.

But the Target tee-shirt – why can’t I throw it away? I bought it long after his diagnosis, there are no really good associated memories. It’s washed-out, shabby and smells of the last Care Center he was in. Doesn’t even smell of him. It was in a drawer, washed and folded.  Clean. It ended up in the box of belongings I brought home.

One thing I have never been able to find since he moved out to residential care has been his wedding ring. He wore it on a chain around his neck for years. But in the middle stages of his illness, while still at home, he would roll it off over his head if it was irritating him.

He would hand it to me with a grunt as if to say“Here, take care of this”. So I did, I treasured it. If he handed it to me while we are out, I would put it into my handbag. Then when we got home, I would transfer it to the jewelry box for safe keeping until he asked for it back.

Once I got home from work to find all my handbags (and I have many) strewn across the room. I asked what happened and he could not tell me.

I eventually got that he was looking for something (after a long game of Charades) and by a sequence of elimination, I realized what it was. The ring.

I took it out of the jewelry box and handed it to him.

That was the last time I ever saw it.

In the day-to-day melee that followed, I never noticed that eventually he was not wearing it any more. It was only when I sorted his things out after I had moved him into a facility that I realized I hadn’t seen it for ages. I felt so bad about it. Still do.

Wish I could find it. I keep hoping it will turn up someday.

I have no idea how that will happen since I have moved house and downsized pretty much everything since then.

wishng ring 2

  ……just wish I could find it.

FTD – the Number One Spirit Stealer.

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It has been over a year since my husband died as a result of Frontotemporal Degeneration. The last two years of his life were stressful for all of us and that’s putting it mildly.

I have been a little perturbed lately by the many FTD blogs I follow and a Yahoo FTD Support group I am involved in. In the midst of my own desolation over the last two years, it seems that many other people have now started on that same journey. They tell their tales here and on the pages of books now available on Amazon and iTunes. In libraries and bookstores. Some of the stories are almost unbelievable. But I believe them because I too have experienced many of the episodes they describe.

“Odd” behavior doesn’t even begin to describe it.

Challenges in social situations. Even with the most mundane of household tasks and necessities.

It’s not that I have forgotten what I did, just that I cannot believe that I actually did it. Handled things I mean.

I’ve always been pretty strong and been able to cope with just about anything. But, going through the day-to-day challenges of FTD  – well frankly, I’m still a little gobsmascked. The saddest thing of all was that the one person who would have helped me cope with such ordeals on a daily basis was the one person who could not help me. We went through so much together before FTD- but no more than anyone else really. You know, the usual ups and downs of everyday married life with kids.

But we were always there for one another – someone always had your back. The toughest part for me since he died is not actually being anyone’s “Number One” anymore. My kids have their spouses and kids, my in-laws have each other. Seems like everyone has someone who puts them first. so that is the hardest thing for me right now.

Number One 4I’m my own Number One!

Being a nurse, mother and wife,  I am used to prioritizing and putting the needs of others before mine. It’s quite a new sensation when you don’t have to do that anymore. Strange.

Anyway, watching all these other people go through such similar experiences moves me in different ways. Angry obviously, that the bastard disease takes such a toll in such a cruel, insidious way. Touched by the humility and acceptance of many of the caregivers. Frustrated that I cannot help very much. I can offer to relate my experience but would never dream of giving ‘advice’. Every person is unique. Every person with FTD is unique. The bastard disease attacks the very soul of its victims, it seems.

 Darth Vader

  The destroyer of dignity, spirit and freedom reigns supreme.

Hang in there folks. You can’t stop it taking your loved one but you can stop it taking you.

I have no magic pill for either you or your loved one. You will come out the other side of the tornado changed. Broken but still strong. Sadder but wiser.

Hanging on a rope  As Franklin D.Roosevelt said:

“When you get to the end of your rope, tie a knot in it and hang on”.

Listen! They’re playing our song! 10 Loving Thoughts in the Midst of the FTD Maelstrom

tornado 1

1. Music. That one (or more) song that makes you smile every time because it reminds you of a happy time. One of mine is Crowded House’s “You’d Better be Home Soon”. It reminds me of lazy Sunday afternoons sunning ourselves out by our pool. Swimming and just generally hanging out. Sometimes with friends sometimes just us two.  Everyone has an “our song” too. Or maybe several as you traverse the years together. One from the 70’s, 80’s, 90’s etc. songs you remember as markers in the passage of time.

2.  Watching. That TV show or movie that you both loved or hated. During the middle stages my husband could only follow shows that he had watched many times. “Two and a Half Men” and “M.AS.H.” were favorites. Short, funny, familiar.  Before that though we shared laughs and tears watching shows on PBS that reminded us of our U.K heritage. Along with “Shawshank Redemption”, “Calendar Girls” and “Love Actually”.  I can’t watch any of them right now.

3.  Football. (Insert the sport or pastime of your choice in here). On Saturdays or Sundays nowadays, my sons and I watch our team, Manchester United. This habit developed over the years. First when our sons lived at home. We would get up at 430am to faithfully follow our team and watch the live games. Enjoyed our “Full English” (breakfast) with friends and family. It was quite the occasion almost every weekend. Happy times.

Of course as the bastard disease took over, my husband lost focus and could no longer sit for 90 minutes or even follow the game. He would echo comments on the game that were made by everyone else. Eventually he would get up and wander around the house. Unable to concentrate on his beloved Man. U.

4. Walking. We both loved to walk. Around our neighborhood. Up the mountain trails across the street. We walked for exercise. We walked for fun and enjoyed the time together away from the hurly-burly of the work week. We walked early in the morning. After dinner. At the weekend.

Walking was something we shared right up until he moved into institutional care. He would walk ahead of me then.  Turning to check now and again that I was still there. He loved being outside. The freedom of being unconfined. No talking was necessary. He could just march forward like the old days. No pressure.

5.  Dancing. Apart from the “our” songs, which are meaningful for different reasons, any opportunity to dance around the kitchen island made us laugh. If a familiar song from our teenage years came on the radio we would dance in the style we did then. Hilarious. Even when ironic humor was no longer understood, he could understand fun. For quite a while anyway.

6.  Friends.  It’s amazing how people unexpectedly surface or disappear during a protracted terminal illness. People step up. People step down. It’s quite surprising who those people are. Disappointing too. But people will do things you never expect at all. Sit at your house, cook for you, drive your loved one to an appointment.

Others make promises of things they think you want to hear. Things that you would expect of friends. Maybe their version and understanding of friendship is different than you thought.  Still you love them anyway because you sort of understand why they stay away.  Understand their excuses.

They can’t stand to see their friend in such a state. They can’t overcome their own pain to help you with yours. Or that of your loved one. Maybe they think your loved one won’t know that they have drawn away. But I think they do. Especially in the earlier stages. It is quite upsetting for them to know that their best buddy can no longer bear to talk to them. You can forgive maybe. But not forget the hurt.

7.   Photographs. Looking back at images from earlier in your relationship can evoke fond memories and loving thoughts. This may seem like a no-brainer. But when you’re deep in the midst of handling the bastard disease it can be good for the soul to remind your self of how it was. Instead of looking at how it is now.

8.    Food.  Favorites change once you get into the throes of FTD.  Clinically, it may be that the sense of taste diminishes. What it means for you is that old favorites turn into something no longer tolerated. A propensity for all things sweet prevails. But that’s ok because sharing a Starbucks Frappucino can become the highlight of a visit or your entire day. Just serving something that gives pleasure can be one of the few things that you feel you’re doing right. If it’s not nutritious so what?

At one of his residential Care Centers, my husband would pocket the chocolate chip cookies they gave him at snack time. Then when I came to visit, he would get them out of his pocket and share them with me. They were a little worse for wear – crumbled and melted, but he got great pleasure out of the simple act of sharing.

New favorites can become a source of satisfaction for both parties.  For you, feeling a sense of accomplishment at being successful in getting them to eat something. For them, the simple pleasure of taste sensation.

Feeding them love. Good for everyone.

9.     Sleep. Sex aside, just the simple act of lying next to a loving warm body evokes a feeling of comfort and security.  Sharing a sleeping space brings these things to both people.  Sleeping together is often the only ‘alone time’ you get together if you both work and/or have kids. You come to relish those late night/early morning whispered conversations. Don’t want to wake the kids/in-laws/guests!

We managed to sort out many of life’s problems in those stolen moments together.

There comes a point of course, when this may be no longer possible. I did move into a guest room eventually.  Mainly because the restlessness of one of you all night doesn’t go well with the other one getting up for work at 4.30 or 5am.  Sleeping itself is often a major factor in FTD.  Either not enough or a lot.

In the middle stages, while he was still able to stay home alone during the day, my husband would nap frequently. Then when I got home from work, he would sleep all evening after dinner. Then go to bed, potter around in the bedroom for an hour or so and sleep for eight hours.  Restlessly – up and down during the night, but still sleeping most of the time.

10. Trips. Traveling together was something we always enjoyed. Back to England. A short hop to Los Angeles or Las Vegas. A cruise. A beach here. A city there. London. Paris. New York. Greece. Spain. Started by my husbands naval history. But furthered by our mutual love of enjoying different places and people. We loved to ‘people-watch’.

The last “big trip” we took together was in 2010. Two years before the bastard disease put a stop to our travels. It was a stressful, anxiety-ridden time but worth the frustration. The last opportunity for a semblance of quality time together.

We traveled to the Caribbean to see an old friend. Relatively happy times. I’m glad we did it.

I have loving thoughts of all these things. It doesn’t really help with the pain sometimes. But remembering is comforting. At first it is hard to remember back to when FTD was not the intruder. Even though there were many years and happy memories before it came along.

All I can tell you is that there can be loving moments and smiles even on the darkest of days during and after FTD has taken what it wants from you.

The bastard disease can’t have it all.

So there 1

 

 

So there!