FTD -Living with Dad

Happy Father’s Day to all those men out there who are dads, granddads, stepfathers, foster dads, and those who step up when dads are absent, including the many mothers who do double duty.

Today, we honor those men who are or have been in our lives to guide, teach, support and love us. For those of us whose father is no longer with us, it is a day filled with memories, hopefully good ones, and love. My fatherly experience was very good. My dad was a hard-working, dignified, decent man who loved his family. He died in 2000 at the age of 68 from the lung cancer that had been growing, despite his smoking cessation fifteen years before. My father-in-law also met the same fate at the age of 44. My husband was 19 when he died and had been looking forward to spending his adult years sharing good times with his dad. My brother-in-law was 11. His dad’s death at such a young age had a significant effect on his life. So, our Dad longevity track record is not very good. My husband loved his boys. Although they were grown men when FTD made its appearance, it still had a devastating effect on them, as it does on all of us.

My Dad aged 17

“Dad” memories for me are filled with Christmases – all of us in his and Mum’s bed on Christmas morning, him trying on a new gifted hat in his pajamas. With summer vacations, candy and comics on a Friday night (payday). Walking half a mile down the road to meet him from work, just so I could get a ride home on the back of his motorcycle. The “What time d’you call this?” nights. The “yes, I suppose I’ll come and get you” midnight response to my pleading phone calls when I missed the last bus. (I was banking on the fact that by the time he got to me his fury would have subsided, which it always did). The memories of my dad include family Sunday dinners and early morning breakfasts together, just the two of us, then he would take me to meet my ride for work. Happy times. I was shielded from a lot of the ugliness in the world and will always love him and my mother for ensuring that my brother and I had such a happy childhood.

He made some mistakes my dad, which meant that we did not see each other as much as I would have liked when I was older. He married another woman after divorcing my mother to whom he was married for over twenty-five years. I was married and in my own home by that time, but the realization that he wanted something other than “us” was shocking to me. We saw each other of course, but it was difficult for me get over the fact that he had wanted to destroy our family unit and be a part of someone else’s. But he did and I accepted it because it made him happy. It was hard to watch and be part of but I did it.

When your father has FTD, he becomes like mine did – absent. Thankfully my dad did not “disappear” during my formative years, but after I was grown, but it was still hard. Having your dad at home while having FTD is painful. It makes you angry and resentful. Why can’t you be like other dads? Even though my sons were adults, it was so difficult for them to watch, I know. My elder son, Chris, was living in another state at the time, so he lived it vicariously through his brother and I. He would call and talk to his dad, and as time went by the conversations became more and more one-sided. But Alan so loved the calls, even though he could not speak very well. Just the contact made him feel “normal” again I think. My younger son, Adam, lived just around the corner from Alan and I, so he was much more involved in the day-to-day aspects of FTD care. He watched as his dad disappeared slowly into the abyss, feeling helpless. He was very protective of me. We would talk about what was coming next and how we would handle the increasingly bizarre and agitated behaviors. He has told me since that he would dread every text or call from me – anticipating that some dreadful event had taken place. We discussed how cruel it is to watch someone you love go through FTD and that there is no way out until the disease decides it is time.

Our boys had a close relationship with their dad – one of the ties being football. After we moved to the U.S., we would gather at the weekends, sometimes at 4am, to watch our beloved team play as the game was broadcast live from England. Chris is most like him, but Adam and Alan shared the passion for football the most. It broke Adam’s heart when, as the disease progressed, Alan could no longer sit and focus on the game, getting up and leaving the room to attend to laundry or some other imagined matter more important. His responses to the game would be to repeat comments by either Adam or the commentators. He had lost his passion for the game and the very essence of who he was. It was hard for Adam to see and it was hard for me to watch as their relationship faded against their will. FTD unremittingly takes every last drop of passion and volition.

If you are a child, living with a father who has FTD must be strange to say the least. Protecting one’s children is a priority, so those women who are in this position have to do double duty. Trying to ensure that the children have as “normal” an upbringing as possible, and caring for a partner who has no insight into the terribleness that is being wrought upon the ones they love has to be the most difficult thing they will ever do. It’s doubly heartbreaking for them since they know that their children’s father will never see the dance recitals, track meets, swim meets, weddings and grandchildren that are to come. FTD knows no bounds. Fathers become children before their children become fathers. The slow regression must be, for the children, like welcoming a new baby into the family. But how hard is that explain to your friends? How strange to have to explain your dad’s behavior to your friends. How uncomfortable for you to have your friends over and have your dad act all weird. Some kids of course, take it all in their stride, at least on the surface. They accept and accommodate with the resilience that we know kids have. But the resentment, for which they feel guilty of course, is bound to come. Other kids have parents who divorce, or have cancer, or die in an accident. But these kids of FTD have to live with changing behaviors every day, with no end in sight for several years. They may have to move, change schools, give up things due to financial constraints and lose some of their family or friends because they just don’t understand and fade away. Their dad is around, but unable to go to graduation. Present but unable to contribute at the PTA meetings. At home, but needs a babysitter. Alive, but no longer with us.

So, this Father’s Day, I wish all dads a lovely day. But I send the FTD kids a special wish that somehow, their life will be enriched by the experience of being forced to care. That they will one day understand how important they were in their dad’s life. And that they will be able to celebrate future Father’s Days with fond memories from better times.

FTD – The 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.

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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.

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

FTD – Only the Lonely Know The Way I Feel Tonight

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“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.

Breathe.

Return to the scene of the FTD crime!

After 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. 

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…..

FTD – R and D? Finally! Happy New Year Arnold!

So here we are. 2015. Happy New Year! I hope that FTD is kinder to you this year. It seems like we are finally seeing a little money being made available for research into defeating the invader into our lives – FTD. Check out this link to further details:

http://www.healthline.com/health-news/nih-grants-30-million-to-study-frontotemporal-dementia-011015#1

As you may know, Arnold Pick is arguably the most famous person to describe a premature kind of dementia that we now know as FTD. He called it “Dementia praecox” In 1891, Dr. Pick described rapid cognitive disintegration, often beginning in the late teens or early adulthood.  Nowadays, frontotemporal degeneration refers to a group of conditions. But at the end of the nineteenth century, work was just beginning on discovering more about this group of disorders, which originally were thought to be psychiatric in nature.

There had been many other physicians, neurologists and psychiatrists all the way back to 50 B.C.E, when a man called Lucretius used the term  “dementia” to describe “being out of one’s mind”.

So, after two thousand and sixty-five years, it’s probably about time for some some money to be put into research, since so much is still unknown about this demon that we battle every day. We hear about Alzheimer’s Disease ad nauseum. I truly understand that caring for anyone with any kind of cognitive disorder is draining,  deflating, soul-destroying. Believe me I know. But the powers that be really need to wake up to the fact that the vast majority of people who develop Alzheimer’s Disease are elderly and require a completely different kind of care to those amongst us who have three children under the age of ten, or teenagers who are grappling with the fact that their parent is not their parent anymore.

Awareness is paramount to the cause of those young men and women who are the partners, wives, brothers and sisters of those afflicted by the bastard disease. Those people who have had their lives snatched away, chewed up and spit out so that their loved one is now an infantile version of their former self. Those beloved ones who are thirty-some, forty-some and fifty-some years old and who will never again understand their role in life. It’s not as rare as one might think or be led to believe by the article above.

Lucretius knew. Arnold knew. They just didn’t really know what they knew then. I would love for them to be spirited to the here and now and see how epidemic their discoveries have become. Of how millions of lives are affected. I wonder what they would think of the vast array of technologies and advances available to us now and despite our knowing much more than they did then, we still don’t know enough to make it go away. Maybe we would know more if we dedicated more time and resources. If we threw everything we had at the bastard disease. If politicians were less concerned about where their next “business’ trip is coming from (or going to). If big pharma were less focused on making money selling their wares and more focused on finding cures. If governments (and not just ours) were dedicated as if it were their own spouse that needed the help.

The zeitgeist needs to change. If you have loved or even just met someone for whom FTD is a reality, you know that social perception and awareness is light years behind the reality.

FTD is occurring globally on an ever-increasing scale. Social media groups are popping up all over the place, with more and more new members seeking support from one another. There are scant resources to help them. They only have each other. The lack of knowledge, the guilt, the resentment, the love. It’s all there. People don’t know which way to turn. There are people who gladly share their knowledge or experience, but sometimes it all seems so futile, Is this what it was like for those people who experienced those things of which we are now so accepting but were the FTD of their day? HIV/AIDS?  Unwed mothers? Homosexuality? I realize that those things also carried (carry?) social stigmas, but FTD can do that too.

Friends, or those we once thought were friends, shy away, not calling or coming to visit. Making excuses not to go out together. It all comes down to fear. Fear of the unknown, of the “I don’t know what to say”. Of feeling embarrassed.

Sometimes I wish someone famous would develop FTD. Then maybe people would sit up and listen. Not that I would actually wish the bastard disease on my worst enemy of course, but anything that would bring a huge public eye-opening about what is happening would be a major breakthrough.

We’ve all heard of Arnold Pick, but most people have not. If he were here now, more glamorous and in a position of power, people would really sit up and listen, right? Right, dream on. I guess there are too many people and groups with vested interests in too many other things.

I always think it’s sad that money dictates how much attention, time and resources are dedicated to one thing or another. If we are humanists, shouldn’t we be doing these things for the greater good? Of course, the researchers all have families to feed too, so I can’t begrudge them that. Just don’t want to line any fat cats already-bulging pockets. Anyway, not to be ungrateful, I think it’s wonderful that $30 million is dedicated to our cause.

To end on a lighter note,  here’s a little dementia humor…….

 

 

Thanks to FTD – (un)Happy Birthday! Cheers! (with just a little dash of sarcasm)

Birthdays don’t have the same meaning once FTD takes a hold. For you or your loved one. Somehow the apathy, lack of insight and total indifference to anything once joyous overwhelm all concerned. Despite best efforts, it is difficult to enjoy those high days and holidays (more to come on that topic in the next couple of weeks).

Anyway, tomorrow is my birthday. My birthday three years ago was a significant turning point in our lives. Not least my husband’s. It was the last day he spent at our home. At three o’clock that afternoon, after waiting around the house all day making phone calls, faxing papers and hiding my anguish, I took him to an inpatient psychiatric unit where I left him, never to return.

So, as hard as I might try, it is difficult for me to “celebrate” the day of my birth anymore. The day comes tinged with sadness and a sense of disbelief that it was three years ago. A feeling of shock that I actually went through with it and took him. Despair (still), that I had to do it for the sake of all our safety, not least his. You may come to (or already have) a similar point in your FTD journey.

It is such a personal, individual moment, just like a birthday really. It belongs to you and you alone. Your feelings as you take those steps to changing your lives forever will be unique to you. Painful, baffling, fearsome, but unique. For me, that turning point shaped the next three years and still does to a certain extent.  If you have been together for a long time, as many of us have, or your FTD’er is your parent, making the decision to move them out of your home is devastating. Then, once the decision is made, you have to actually do it. That’s the kicker. Physically taking them and knowing they are not coming back. They are blissfully unaware of course. Well, if you have played your cards right and not told them. Please don’t tell them. Don’t discuss it with them. Don’t ask them. They are no longer your partner in these kind of decisions. You have become a parental figure and must make these agonizing choices for them now.

They won’t like it of course. Anything that changes their routine, their comfort zone, will not be popular.  That’s why you are not going to run it by them for approval. It’s like choosing your child’s elementary school. You don’t really consider their preferences when they are five after all. It’s the same for your FTD’er. Not capable of making informed decisions or good choices.

You may find it hard to find a “good” place. Of course “good” is an entirely subjective term. A psychiatric inpatient unit is only a temporary measure. After that you will need to find a more permanent residence.  One of the most difficult things is not having the person who previously shared these decisions with you at your side. Hopefully, you have a family member or good friend who will help you. Someone who can remain objective and is not swayed by the emotion of actually doing what you’re doing. Rushing around town to look at suggested places is, at the very least, stressful.

You don’t really know what you’re looking for or at. You don’t really want to do it, so you still hang on to the faintest hope that even now, there may be, just may be, the possibility that it will all be ok and you can take them home after all. Depending on where you live and how much financially you have to contribute, there are other stressors too. Finding $6-8,000 a month is no mean feat. And believe me, not everyone has your best interests at heart. Don’t assume that because they claim to be healthcare facilities that they actually care about you or your FTD’er. It’s big business, residential care.  Choose carefully and don’t give in or give up. Don’t believe everything you are told and don’t settle. Make it very clear from the outset that you know what’s what (even if you don’t, you will find out). Speak authoritatively and make it clear that you are the one in charge of your FTD’er’s care and they are merely working for you. Which they are. And for $6-8,000 a month, they’d damn well better be good.

So, now you’ve actually got them to their new digs – now what? What does that mean for you? Thanksgiving 2011 was a quiet affair in our household. We spent the day at home, each of us internalizing what had happened and thinking about how things were going down at the psych unit. I called of course, but my husband was still raging and unable to understand what was happening. He was quite dangerous at that point, throwing furniture and trying to escape at every opportunity. After a few days of medications, we were able to visit and talk to him on the phone. But he never understood that he would never come home again. So, for the person with FTD, the transition from home to residential care means change, uncertainty, fear and insecurity. All the same things it means to you. Your life has taken on new meaning. New horizons.  A different life.  Regardless of your relationship before, moving your FTD’er into care is unsettling for everyone. But it has to be done sometimes for safety, for peace of mind.

So, my birthday brings mixed emotions. My husband’s birthday is ten days after mine. This year he would have turned sixty. The fact that many of our friends are celebrating this milestone too over this past year and into next brings feeling of envy and sadness. The parties, the cruises, the trips and other celebrations all serve to remind me that we will never experience those things together again. I am happy for them of course and don’t begrudge them any of it.  I just miss my darling at this time of the year more than any other. From October to January, we had our anniversary, both our birthdays, and his favorite time of year – Christmas and New Year. So, I approach this upcoming holiday season with more than a little heaviness in my heart. It’s my favorite time of the year too, at least it used to be. I still like it but it no longer holds the same excitement.

So, Happy Birthday to both of us. I’m sure that wherever he is, he is raising a glass of something in a toast.

The Dance

I am very happy to announce that the story of our journey through frontotemporal degeneration is now published and is now available from the Amazon bookstore.

Writing and publishing it has certainly been a journey in and of itself. I used my journals from the time when my husband was first diagnosed and set the story into a context which describes our early life together. I had wonderful memories upon which to draw. Our letters, mementos and musical memories all contributed to the overall picture. I hope that this serves to illustrate how much our life together was changed by the bastard disease.

Of course, during the writing of the book, I had to go over and over the story many times. The living of it was painful and the writing of it was equally so. I cried almost as much writing it as I did living it. Even now, two years after my husband died, I still want to share with him the sense of accomplishment I feel at having got it all down on paper. But of course, it isn’t all of it. Each time I read it, I think of little things that happened in between the experiences in the book. About things he did and said, things I did and said. But the book isn’t really about me. It is about how this disease causes brain degeneration and ultimately, life degeneration. Our lives were broken down, one brain cell at a time.

Even though my life was irrevocably changed by our experience, my husband’s was changed and ended by it. So it isn’t about me. It’s about our love. It’s about the life we shared. It’s about what it did to him and vicariously, to me. Most of all, it’s about us. Who we were, and who we became.

I speak with other people who are caregivers for loved ones with FTD all the time. I see how their lives are changed too. Daily, weekly, monthly. But the big change is forever. We are forever changed by our experience and what FTD brings to us and takes away from us.

There are many cliches about losing someone you love. So yes, there is a hole in my heart. Yes, a piece of me is missing, never to return. And yes, I will never “get over it” (and yes, I know that’s not grammatically correct, but you take my point). “Getting over” your whole life is probably impossible. I’m not even going to try. I have been through it, around it, got stuck in what was left of it and have somehow reached a place where I can handle it.

FTD made the holes in my life and my heart. The scar tissue that has grown over the holes is a fine, permeable barrier that sometimes lets sadness in and out. The FTD is gone now. It left my life but it touched me in such a way that I cannot let it go completely. I even wrote an article called “Enough”. I have not published it because I am not yet sure that it is completely over for me. Touching the lives of people who are still battling with the bastard disease remains important. Maintaining contact for what is happening to those people who are in the throes of FTD, or just beginning their journey seems like the right thing to do for now. How long that desire will last, I don’t know. I just know that right now, it still feels a little like a thread of a connection to what happened to us.

And I still need it. I’m not quite ready to say “Enough”.

I hope that you enjoy the book. It was written from the heart, as is all my work. I felt the need to get the story out there, not because we’re important, or because I am vainly seeking attention. But because when it happened to us, so little was known about FTD. So few people were being diagnosed, and so many were and are still struggling every day. I receive comments from some that my blog sometimes lifts their spirits and that is all I need – to know that maybe it was not all in vain.

That maybe our battle was just a skirmish that will contribute to winning the huge war on all kinds of dementia. I have to hope that it is possible. I have to hope that every little thing we went through was for something. I don’t know what it is yet and I may never know.

I hope your FTD days are as peaceful and calm as possible. That you are able to find a way to handle the terrible days with love and humor.

FTD – No Need To Explain!

I could really write this post in three words –

STOP.  EXPLAINING.  YOURSELF.

But let me elaborate.

By the time your loved one reaches the middle stages of FTD, they are, generally speaking, often beyond comprehension of most of what you are saying. That’s not to say they don’t understand the individual words.But their understanding of what they mean all joined together and in context is very skewed.

Their grasp on the social niceties for example, is almost non-existent. So asking them to speak quietly, or stop staring will fall on deaf ears most of the time. You see, it’s not that they don’t know what you said, it’s just that they don’t understand why it’s important. They think that they have as much control over their behavior as they always did. And therein lies the problem. They have the ability to make you think that too.

As I have discussed before, we tend to give our loved ones the respect and consideration that we have for the last twenty, thirty or forty years.  It’s a natural thing to do. It’s the same if the FTD’er is your parent. Any relationship based on love and respect falls back on these things during times of stress. You have an invisible understanding that you just don’t do or say certain things. FTD takes that away.  The FTD brain has so many holes caused by the degeneration that appropriate and seemly behavior become a thing of the past. But not to them. Not to your loved one. They behave just as their FTD Taskmaster tells them to. It’s like having that little devil sitting on your shoulder. “Go on, do it!”. But now there is no angel on the other shoulder – their conscience, telling them not to. Everything is fair game. Even to the point of hurting, physically, mentally, emotionally.

The bastard disease is the Ringmaster in the circus that has become your life.

So, if you accept that your FTD’er is no longer capable of deciding what’s best, you must come to the conclusion that you know what is. Yes, I know it’s not the position you want to be in. Deciding someone’s fate is overwhelming. But one of you has to make decisions and that someone has to be you. Here’s the thing. Once you accept that, you must also accept that your decision is final. No do-overs, no “well maybe’s”, no “we’ll see”. You can say those to your children. Your children can tell when you are undecided. But when it comes to decisions for you and your loved one’s safety, you cannot compromise and dither. The ultimate end to this is that you must not stop to explain. Explaining leaves room for choices. You know that your loved one can’t choose. They think they can, but when they do, it’s often a poor choice. Why else do we have advance directives? Because at the time the person makes those decisions, they are have a clear mind and are making rational decisions.

Explanations leave you vulnerable to “No” .

Explanations offer a chance for the person with FTD to make a poor choice.

Explanations answer the “What?” with “Because” and the because will probably be unacceptable.

Because they don’t understand the “Why” or the “How”.

Because FTD has addled their brain and their thoughts can’t get through the tangled mess.

You explain because it makes sense to you.

Because you have done it for years. Because it’s respectful to give the “Why”.

Because you love them.

Explanation can cause more confusion and provide fuel for outbursts of defiance. You’re explaining because it makes sense to you. I have said many times before – “Don’t ask -tell” and this tags on to explanation. Don’t ask a question, don’t give an explanation other than “we are going in the car”, or “Sit down. Put on your shoes”. Anything more complicated will illicit either a blank stare or “No”. If they do ask “Why?”, keep it simple. Say “We have to go somewhere”, or “We are going out”. Try to keep these conversations short, keep them busy but don’t hurry them or they will get flustered. Let them put their shoes on/take a shower/walk to the car at their own speed. Your frustration will rub off believe me. Just make sure you allow enough time for slow movement and bite your tongue.

Explaining comes naturally to us. We are accustomed to people needing to know why we want them to do something or what we are talking about. Your loved one with FTD no longer has the capacity to rationalize these things. For them, it’s about the here and now. You may have heard the term “WIFM?” – “What’s In it For Me?”. This is the perfect acronym for your FTD’er. They are not being selfish. Their sense of self is diminishing fast. Selfishness relies on a purposeful action that will benefit only one. FTD brings out instincts in a person that are usually controlled by social mores and respect for others. Filters and inhibitions are eventually so eroded in the FTD brain that thinking of anything other than mere existence is impossible. There comes a point when even that is gone and risky behaviors result. The concern for self-preservation deserts your loved one and it will be up to you to protect them. It’s a jaw-droppingly scary position to hold – Protector of the Vulnerable. But you can do it. You will make all the right decisions. Trust your love and your instinct.

Just don’t explain why.

There is another aspect to the explanations also. In a perfect world, your family would respect and understand why you do the things you do. Sadly, people in your family may not appreciate your now-seemingly bombastic approach to caring for your loved one. If they are not around FTD much, your behavior may seem akin to that of Attila the Hun. Their denial may lead them to the conclusion that you’re a know-it-all control freak, with Hitler-like tendencies. I have to say here that my own experience was not like this at all. My family and friends were nothing but supportive and helpful and for that I am eternally grateful.

Well, to hell with those people if they refuse to accept your explanation, demonstration, literature and.or pleading. They are human yes, but they should respect your decisions. They are not entitled to an opinion unless they are there 24/7, see what goes on in an FTD house and contribute to the s**tstorm that your day can be.This goes for those curious people at the grocery store too. I hear time and again about families who just flatly refuse to accept that it’s as bad as it is. But they don’t ever want to come over to your house and experience it either. I know of many people whose already effed-up lives are further disrupted by constant denial or even obstructive behavior such as encouraging ‘normal’ activities in an person with FTD who cannot possibly understand the why or how.

Don’t explain anything to them once you have come to the conclusion that they are ignoring your advice and wishes. Stop validating your actions with people who are ignoring the inevitable. It’s not worth the energy. They will either come around or they won’t. But you have enough on your plate.

Stop explaining.

When you’re down and confused…….

Love the one you’re with 🙂

FTD – Happy Anniversary, you bastard

Today is the 38th anniversary of our wedding. In 1976, we were bright-eyed and eager to see what life had in store for us. I am so glad we didn’t know that FTD was going to invade our lives and destroy what we had built for thirty-six years.

I cried today. That’s not really unusual. I was sad and my dog brought me his bone. That made me cry. I guess it wasn’t far away, under the surface and that simple act of innocent kindness brought it out. It was then that I realized that our anniversary is still significant to me, even though my husband died two years ago. I realized that nothing –time, distance or circumstances will ever change that. People ask me if I’m dating – “You’re still young!” and look at me strangely when I say that it never crosses my mind and I don’t see a time when it ever will. Spending almost forty years with someone that you love so unconditionally and they you, makes that unthinkable.  The things one has to do and endure when caring for someone with FTD  have somehow made me more detached from reality. I can engage in the stuff of life – fun, laughter,smiles, sadness and joy. But I am so changed by my experience that I am almost a different person entirely than that hopeful, full-of-dreams girl that I was in 1976. People have been on the receiving end of this new person and are sometimes shocked I think, by how different she is from the old me.

FTD destroys lives and dreams. But it never destroyed my love. Somehow, I was able to separate the love from the horror. At times, it was as if everything that was happening was not happening to us. I have written about love and FTD many times. It was a driving factor in my FTD experience.  I cannot imagine how I would have coped without it. My own love for my husband, the love I knew that he still felt for me, even though it was masked by the bastard disease, and the love I had for our family as I witnessed their pain. The journey was like walking a path to a destination you never want to reach. As painful as it is, you know that reaching the end will be even more so. And there is nothing you can do to stop the relentless onward march towards your destiny.

In 1976, I imagined my destiny to be somewhat different. White dress, first waltz, flowers and cake. Handsome husband, first home, fun, fun, fun. He only forgot once, after about 3 years. He remembered after he had dropped me off at work. I got the best bouquet and champagne dinner that day 🙂

A year before he died, FTD made him forget too. The bastard disease created another hole in his brain and our anniversary slipped through. That last anniversary we were together, our son came round with a card for us and my husband was devastated that he had forgotten. So my son gave him the card to give to me. That made him feel better that he thought I thought he’d remembered.  Even in the depths of his confusion, he felt the love. One month later, he moved into his first residential home and ten months after that, he died.

Of course, the thirty-eight years were not all fun, fun fun, even before the FTD. We had challenges, just like everyone does. At first, when FTD came along, we carried on as ‘normal’. As you know, the onslaught is so insidious, it is shocking at times to realize that things have changed. Then suddenly –Bam! Your groom/bride can’t speak properly anymore. Or they’re hiding things, or spending all your money. You are inexplicably broke and getting thrown out of your house. Or you are bailing your loved one of out of jail. Thankfully, those last two things did not happen to me, but they do to someone who cares for a person with FTD. The bastard disease has a blatant disregard for propriety, respect for others or socially acceptable behavior.

When you make those promises -“In sickness and in health”, when you’re twenty years old, you don’t really understand exactly what it is you’re signing up for. So when the ‘sickness’ is FTD, those promises are really put to the test. But for me, it was not something I had to think about. Maybe I have innate qualities that I didn’t know about, I’m not sure. But I really don’t think I did anything heroic, or anything that all of you are not doing for your loved one.

So what is the point of my blog today? Other than catharsis, I wanted to share how FTD has uncovered things about me that I didn’t know before. In 1976, I wasn’t a nurse, wasn’t a mother, wasn’t a wife until October 30th. I was twenty years old. No-one even knew what FTD was then. I’m glad I didn’t. I guess the point of my writing today is to try to impress upon you how important being in the moment is. Usually I try to offer some kind of encouragement and advice about how to handle your own and your family’s emotions amid the turmoil of FTD. I don’t think I can do that today. Because some experiences and emotions are so personal and unique, that to tell you how to handle them would almost be an insult. You are you, I am me. I just told you that I am not the me I was. I am irrevocably changed by experience. You will be too. The transformation has already started. Your metamorphosis into the post-FTD man or woman is already under way. You can’t stop it,  just like you can’t stop the FTD. All you can do is go with it. Watch in wonder as it appears. I wish I could liken it to a beautiful butterfly emerging from a chrysalis. But I can’t. I can’t promise you will be a more beautiful you –outside or inside. But you will be different, that I do know. Your life will emerge as something completely new. Post-FTD, without the stresses and strains of the practicalities of caring for someone with a debilitating, terminal condition, you will probably be baffled as to who and what you are.

I wish I had an answer. I may never know the answer. I don’t even know if there is an answer.  I am full of admiration for those of you who are still doing what I did every day. My heart breaks for you because I know what is to come. Now I know. I didn’t know in 1976, thank goodness. I was able to have a full and happy life and marriage. We had many champagne moments. I am so grateful for that. My life is still full. It’s full of sons and grandchildren and other family members. I have grown closer to all of them as a result of what we went through. Going back to an earlier comment ” Are you dating yet?”, all I can say is –why would I want to expose anyone else to what our family has been through? How could they possibly understand our pain. They weren’t there, they don’t know. It would not be fair to anyone, an outsider if you will,  to expect them to understand.

I make no apology for the somber tone in my post today. It’s a sad day for me. Tomorrow is a new day and I will bounce right back and be the new me again.  These days are a reminder of what once was. Of what I had, what we had and did. So it’s all good. I have wonderful memories. Even some of my FTD memories are good or at least funny. But there are many more non-FTD memories. From 1976 until 2012, it was a terrific ride. From 2012 until today, I have been able to reflect and rebuild.  FTD could not take that away from me. I may have been down, but never out. My husband loved the feisty me. She’s still around as everyone around me will attest. Bastard FTD. Ha! Couldn’t take that away.

My husband loved champagne. We drank it at every opportunity. I will be having some later.

Happy anniversary to us.