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

AFTD Educational Conference 2016 – New BFF’s!

On May 12, 13 and 14th, I was privileged to have the opportunity to attend this gathering for those who have been affected and care partners. There were over 300 people in attendance, 45 of them being diagnosed with FTD. For me, as an alum of this club no-one wants to be in, the best part was meeting up with so many virtual friends that I have made as a result of the bastard disease. (Ha! Take that FTD!)

I will share some of the highlights that jumped out to me and information from some of the presentations, but what struck me the most were the meetings with people, most of whom I had only “met” virtually before. I was touched by the immediate friendship and love that happened among people who, if it were not for Facebook and FTD, would never have come into contact at all. But more about that later.

In his Welcome Address to the Conference, Jary Larson, the AFTD Board Chair, spoke of his personal connection to FTD and about inspiration, advocacy, and spreading awareness. But by far, the most powerful illustration of all these attributes was offered by Susan Suchan. Susan is diagnosed with the PPA variant of FTD and is a tireless and charismatic champion of the cause. You can see more of Susan’s courageous and powerful story in “SUSAN’S STORY” but for now, take it from me that she is the funny, generous and staunch advocate that we all need. I know that many people gain comfort from her courage and the fact that she is willing to put herself out there and show the world what FTD is, what it does to people and their families and show that dementia of any kind, but especially FTD, changes a person’s abilities, but not who they are. 

After the opening, there were two excellent presentations by physicians –an overview of the various FTD disorders and subtypes by Dr Alvin Holm, followed by a presentation of advances in research and what is/will be happening to find out why and how the object of our misery comes about. Dr David Knopman spoke of small advances being made, but it is agonizingly slow progress, with clinical trials taking place over the next five years in longitudinal genetic studies.

One of the most exciting things that followed the medical information was the announcement by Dianna Wheaton from the the Association for Frontotemporal Degeneration – AFTD, of the implementation of an FTD Disorders Registry. This is a chance to tell your story! The Registry needs feedback via research but mainly from anecdotal “storytelling” from people like you which will enable the collection of data to contribute to further research. The Registry will pull together all the scattered pieces of information to provide a critical tool in research, funding and demographic data. The Registry will advance the science towards a cure, and your story will become part of the movement. You can join the Registry HERE and follow them on social media Facebook and Twitter

Following Dianna’s presentation, there was a Q and A session with the panel of physicians, most of which centered around genetic research and potential treatments. People were really interested in these things obviously, but sadly, there were few definitive answers and many “we don’t know”s. The good news is that more funding seems to finally be coming our way and there is great hope for progress, albeit slow.

During these presentations there were separate concurrent sessions for diagnosed people to attend. The topic was “Building Bridges”, presented by Matt Sharp and Teresa Webb from the AFTD. By all accounts, it was very informative and engaging.

During a nice boxed lunch, there was opportunity for networking and socializing with everyone that you hadn’t yet connected with. I had the privilege of meeting up with Susan Suchan and some other people who actually have FTD. They are such a shining example of never giving up, and working diligently to ensure that the word gets out. They fight the good fight for everyone else and never cease to amaze me with their good humor, humility and courage. It was so good to meet up with people I had only ever seen on Facebook and hear their stories in person. I also reconnected with a couple of old friends, both of whom I found through FTD – Geri Hall and Rebekah Wilson, who were presenting in the breakout sessions at the Conference. Geri is a renowned expert on FTD, although she is very humble and modest about it. She is a PhD and an Advanced Practice Nurse and Clinical Nurse Specialist at Banner Alzheimer’s Institute in Phoenix. Among other things, Geri has developed many programs of care strategies for people with dementia and sees people with complex behavioral needs. Rebekah is a Social Worker who works to provide education regarding dementia and dementia care standards. She has devoted much of her career to improving the quality of life for those with dementia and their care partners and in hospice support.  I first came to meet Geri and Rebekah when they co-facilitated FTD Support groups here in Phoenix. They were immensely helpful to me and many others during times of crisis and in helping manage behaviors and placement issues.

When we returned from the break, Susan Dickinson, the Executive Director for the AFTD, presented some information about upcoming events and news regarding funding and awareness. In August of this year, the 10th Annual International Meeting for Frontotemporal Disorders will take place in Munich, Germany. There will be research applications, advocacy and biomarkers initiatives. Raising awareness is key here too, and about 10 countries will be represented. World Awareness Week will take place this year from September 25 through October 2nd, with many Food For Thought events taking place. This year, there has also been the “#whoilove” campaign that took place in February, where several families, caregivers and diagnosed persons made short videos about their experiences and posted them on the AFTD website to encourage donation and awareness. Susan also spoke of the increasing number of support groups now facilitated by the AFTD and volunteers, both phone and “Zoom” online groups. 12 new groups were started in 2016, making 32 in all, with 41 group facilitators. the AFTD has been busy providing training in group dynamics, facilitation skills and current information. The focus is on high-quality and supporting challenges. There is also a helpline, email contact address and lots of information on their website http://www.theaftd.org/

Dr Alvin Holm presented a Care Paradigm for people with FTD, one which includes disease-specific therapies, wellness management, in addition to environmental support.  Dr. Holm’s described the physical, caregiver and expectational support needed for persons with FTD very accurately and with compassion and knowledge. One of the biggest takeaways of the day for me was when he said-

Environmental support is to someone with FTD what a prosthetic limb is to an amputee

The four breakout sessions for the afternoon were:

• “Supporting Each Other” – specifically for diagnosed persons
• “Movement Disorders” – for people interested in PSP, CBD or FTD/ALS
• “Language Disorders” for people interested in PPA
• “Behavior Disorders” – positive approaches to behavior changes at home and in the community
• “Residential and Facility Care” – for people considering residential care and how to promote a positive experience
• “Comfort Care and End of Life Considerations” for issues in advanced FTD, addressing end of life decisions and the value of hospice care.

 

 

When the groups reconvened in the main room, there was a presentation by Dr Darby Morhardt and a panel discussion on the various aspects of the impact of FTD on families. Two of the panel members were spouses of people with FTD and parents of younger children.There was a very moving video presentation made by the panel member’s children, discussing how their respective mother’s and father’s FTD had affected them over the last few years.

Next, Charlene Martin-Lille shared some techniques and practical tools for managing stress during your FTD caregiving. Charlene teaches classes in resiliency – stress management, mindfulness and positive psychology at the Mayo Clinic in Rochester, MN. She often works with and advocates for those with dementia and their care partners.

The keynote speaker for the conference was Nancy Carlson – a writer and illustrator of children’s books, who began a blog about her journey with her husband Barry as he battles FTD. You can read Nancy’s blog here. Nancy has written and illustrated more than 60 children’s books since 1979.  Her creativity is one of the things that helps her cope with so much loss in her life.

The conference provided a wealth of information in the lobby area for volunteering, regional information, grassroots events and group facilitators. Following the closing address by Jary Larson and Susan Suchan (more tears!), there was a lovely dinner reception hosted by the AFTD.

The conference was such a great opportunity for meeting, networking and socializing with people who truly “get it”.

 

Feedback on the conference was requested and I hope that the AFTD will use the comments and evaluations to make next year’s conference in Baltimore equally, if not more, engaging.

This week, I will work on getting the Conference program and resources into a pdf format, so that I can email it to you and you can explore and enjoy. There was lots of information and quite a few handy “checklists” that will be useful in various aspects of caregiving.

As I said at the beginning of this post, one of the greatest things about this conference was getting to meet so many people who had previously only been out there in the ether. There was a terrific sense of camaraderie and friendship almost immediately, largely due to our shared experiences, sense of humor and love of wine. It was an honor and privilege to meet you all and I hope to continue these friendships as we all travel this path, even though we are in different places, literally and along the FTD journey. Thank you so much to all, you have enriched my life more than you will ever know x

 

FTD – Bringing New Horizons

Since becoming a lady of leisure recently (hah!) I have been tackling some projects around my house. Just small things that I didn’t have time to finish (or the inclination when working 50 hours a week) following the big renovation last year.

One of the things I noticed while painting, sanding and stenciling, was that if I made a small mistake, or got paint somewhere it shouldn’t be (mostly on me), it didn’t matter. Doing a half-assed job really didn’t matter. As long as it looks mainly ok, that’s alright. That’s something new for me. It began while caring for my husband at home. Standards of housework, appearance and status became a poor second to ensuring that my darling hubs had what he needed and was safe and comfortable,

Treading the FTD path brings out things in you that you didn’t know were there, but more importantly it puts things into perspective. When I lost my job, I went through a myriad of emotions, mostly because that place had been one of my sources of support through the FTD years and now it’s no longer available to me. I am banished. But what was eventually revealed to me over the last few weeks is that the job is not who I am, it’s what I did. That’s a little contradictory to what I have preached throughout my nursing career. I used to always say that nursing is not what you do, it’s who you are. The ability to empathize, bear the pain of others and make compassion a daily practice comes from inside. It is who you grew into as an adult, not what you were taught in school. So, although I am a nurse at heart and I have those necessary qualities, the place I demonstrate them is not really important. When the banishment happened, I told everyone – “Don’t worry, I’ll be fine, it’s not the worst thing that’s ever happened to me”.

And that is true – it’s not. FTD trampling over my love and my life was definitely the worst thing that ever happened, and I survived that. I am still here to tell the tale and hopefully, help others to weather the storm that FTD throws at us.

Learning to adapt and compromise is one of the basic tenets of handling FTD. I wrote about acceptance and resilience here, discussing how important you are in this whole equation. This thing has invaded your life and, despite its best attempts, you are more than capable of pushing back. Lately, I have become more involved in local attempts to influence legislation around dementia support. It’s a huge task and it will take many people and longer than any of us would like to influence progress. But I have the luxury now of fighting for others. I can fight FTD on a different front. You are in the trenches, fighting hard to maintain some kind of quality of life for you and your family. That’s hard. Harder than anything you will ever do. That’s why I think I can now afford to be half-assed about stuff. Because my priorities have changed. I know that the stencil on my laundry room floor is not as important as finding my husband a safe place to live when I couldn’t take care of him anymore. I know that if the paint dripped on my patio pavers is cleaned up less-than-perfectly, my life will not fall apart. I know that as lucrative and comfortable my high-flying job was, it was not the definition of me. 

Now, I am more likely to have a pet-friendly sofa, a grandchild-demolished bathroom and days without make up or showers. But it’s because I am calling the shots, not FTD.

My new work involves advocating for others and helping them to navigate the complexities of our funky healthcare system. Not that I know everything about those things of course, but I hope to bring some relief to people struggling to find their way through the FTD  maze. I hope that, in time, such advocacy for those of us who are otherwise occupied with FTD and its dubious charms, becomes mainstream and not just for those who can afford it. It is my hope that the healthcare system will wake up to the dementia tsunami that is upon us, sooner rather than later, but like most things in government, the wheels “grind exceeding slow” to quote our old friend Euripides, who was actually speaking of the ways the gods work, but you get my drift. In the meantime, I will do my best to advocate, navigate and support those I can to weather the storm and come out the other side as I did. If one person’s journey is a little easier for a little time, then I will consider myself successful. And I won’t do a half-assed job of that, believe me.

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FTD -Ever Decreasing Circles

As one who has passed through the weird “Looking Glass” of FTD and back again, I now have a different perspective on the day-to-day oxymoron of “frantic meanderings” through tantrums, crises, tears, laughter and frustration that comprises those days.

As your life turns in ever-decreasing circles towards the inevitable end point, you become completely caught up in all aspects of the caregiver life that has been thrust upon you. Your world becomes smaller, more focused upon the minutiae of feeding, cleaning and keeping your loved one safe. Everything gets smaller – your circle of friends, your sphere of social activity and even your one-to-one interactions with your spouse, parent, child or partner. In fact, your entire world becomes one specifically centered around ensuring that everyone is safe and as comfortable as possible. This is almost im-possible when it comes to FTD. The degeneration of the brain can be imperceptible on a daily basis, then all of a sudden, they can’t do something that they could do yesterday. Or won’t eat something that was the only thing they would eat yesterday. But sometimes, there are things that persist all throughout the course of the disease process without fail.

Lately, I have been hearing a lot about “pacing”. This was something my husband did all the time, even up to about a week before he died. He was weak and frail and did not eat or drink for the last eight days of his life, but by God, he could still pace. Eventually, he was so weak that he spent more time in bed than he did pacing. Not for lack of trying though. He would still struggle and try to get up even when he physically was no longer able. He struggled right up until the last two days of his life and even then, sedated and pain-free, he moved his legs in the bed as if he was running, running for his life, which he was. Pacing was the one thing that relieved the anxiety that persisted throughout the latter half of his FTD ride. He was not an easily “soothable” man, but the physical exertion was the only way he could relieve the pent-up energy that was still generated in a young(ish), fit man.

Pacing, if overruled by medication in the form of anti-psychotics or anti-anxiolytics like Ativan,  can often lead to uncontrolled screaming and agitation because the anxiety that persists has to come out somewhere. Pacing is not the cause of anxiety, but a symptom of it. Yes, medication can help, but in addition, a less stressful course of management can be bouts of physical activity balanced with periods of rest. This will enable your FTD’er to use up that energy and sleep during the day, hopefully encouraging a more restful sleep at night – especially for you. I hear constantly about the exhausted caregiver who cannot sleep at night because their FTD’er is up and around, rummaging in drawers, or kitchen cabinets, or just pacing. It’s difficult to prevent this behavior but there are some things you can do to alleviate your frustration with it.

• Mental and physical activity is vital. Not to the point of exhaustion, but to let out energy.
• Remember that “stimulation” is not what you are aiming for – that can cause more frustration – but rather a use of the faculties that are still remaining can bring a degree of satisfaction, especially in those still high-functioning FTD’ers.
• Don’t rule out anything that you feel may be an insult to their dignity. I was the biggest proponent of maintaining as much independence as possible for this very reason. But remember, that as the disease progresses, so does the mental development age. So, those distractions that would amuse an 8, 5, or even 3-year old may suffice for a short time. Jigsaw puzzles, age-appropriate children’s books, coloring (be careful they don’t eat the crayons!), or a simple ball game.
• Think about how “dignity” looks in a 3-year old. They are much less inhibited and conscious of social norms and it is likely that your FTD’er will be too. Often it is your own embarrassment or humiliation that prevents you from offering activities that you may consider “childish” or inappropriate for a man or woman of 40+.

One person I know keeps her husband so busy, he doesn’t have time to “get into mischief” so much. Long walks, jumping in puddles, hot tub baths, large toys, craft activities, she is very imaginative. I know, I know, being this creative can be exhausting for you, but you will reap the rewards in a different way if your loved one sometimes rests in the afternoon and sleeps at night.

 

If they are a pacer, let them pace. My mantra was always “If it doesn’t harm him or anyone else, it’s ok”. Walking with a purpose or end goal is not the point here. Just the act of walking can be enough to soothe a troubled soul. Everyone is different. Some high-functioning people are able to go shopping, visit the park, spend time in social situations for a long time into their illness. But, eventually, these skills will diminish too and you will have to think of new ways to occupy those long days, especially if they are physically fit and healthy.

It’s important to remember that what you consider to be boring or mundane, may seem like the most important thing in the world to someone with FTD. The obsessive- compulsions, or repetitive behaviors like tapping or humming, may drive you crazy, but they are self-soothing mechanisms by which the person with FTD is trying desperately to hold on to some sense of control. As difficult as it is to ignore, your own sense of frustration will lessen if you can switch off from anything that is not destructive or harmful. It’s a little like when you have kids, you have to change your priorities and what you would like to be done and perhaps lower your standards of how tidy your house needs to be.

Rest for all is equally important. Not necessarily sleeping, but sitting quietly and doing nothing. My husband would only do this if I was sitting next to him, which was frustrating since I could think of a million things I could be doing once he was sitting down. But, the minute I moved, he would become restless again. The only way he would sit calmly was if I would sit calmly too. Looking back, that was not necessarily a bad thing. Those little enforced breaks meant that I had moments to treasure later. Moments when it was just the two of us and I could pretend that FTD was not holding us hostage. Although it did mean that laundry and housework didn’t get done. Oh well.

In residential care, Alan became an expert pacer, forcing his caregivers to follow him down the long hallways, complete a circuit of the pool table and then trot back down towards his room at the end of the hall, to begin the process all over again. I was amazed at their patience and tenacity, along with the fact that they never questioned it, or tried to stop him until they could see he was becoming exhausted; at which point they would try to distract him with food or something, in an effort to get him to rest. Sometimes they were successful, sometimes he would almost fall asleep while walking, at which point they would skillfully guide him back to bed for a nap. He paced when I was there too, and I would follow him and guide him around obstacles, which at that point, he could no longer maneuver. Thankfully, he never fell, which is a miracle in itself. As boring as it was to walk those halls, he would hold my hand and walk ahead as if showing me around the place. We would stop and talk to the staff, sometimes he would try and go into other people’s rooms, but was easily redirected. As weird as it may sound, we made some fond memories under horrible circumstances and I am grateful to the staff there for making the last weeks of Alan’s life as pleasant and comfortable as it could be. It was a time of great reflection for me, living alone for the first time and working without worrying about what he was up to at home. Although I became exhausted in a different way – emotionally – having the time to reflect on what our life together had become and what the future would be for me.

So – pace yourself! The ever-decreasing circles of your life will take stamina and determination. Those days when you are utterly exhausted and tired of being the nice guy will make you weary. Do whatever it takes to make it less so. I slept in a different room for the last two years my husband was at home. It’s amazing how a good night’s sleep can improve your outlook. I used to hear him sometimes, shuffling around, opening and closing drawers, rearranging his closet until late at night. Once I knew he could not get out of the house or into my room, I could rest easy and let him do his thing. Eventually he would fall asleep after wearing himself out – sometimes sleeping on the floor in his room. The upside of this was that he slept in in the morning, leaving me the time I needed to get ready for work, before I woke him to get ready to go to adult day care. If it’s possible to have someone come and be at your home overnight and be prepared to attend to your FTD’er while you sleep, you should definitely take them up on it.

Throughout this exhausting process, be sure to do a few things to take care of you. If you have someone who can sit in your house for a few hours, go out and do something you like. Guilt is not an option. (There’s a whole other blog post on that!). You need to recharge your own batteries. Believe me, I know what it is to drive yourself into the ground caring for someone else. As the old saying goes, “If I knew then what I know now………”. You get my drift anyway.

There comes a point where you have to make ever-increasing circles without them, even before they are gone, but especially in preparation for after. I think about all of you out there every day, believe me. I know it’s the hardest thing you’ve ever done or probably will do. My heart hurts for the things you are going through. I feel a personal connection with all of you, even though we have never met.

FTD – Mission Impossible!

“It always seems impossible until it’s done.” – Nelson Mandela

Work – it means something different to everyone. What is it anyway? I have written about it here before, about what it means to someone with FTD. It represents having control over one’s life, contributing to life, liberty and the pursuit of happiness. As much as we all say “Oh God, it’s Monday already?”, work gives context to our lives, it gives us purpose and drive. If you’re lucky enough to love what you do, then it isn’t “work” in the true sense of the word.If you have a calling, a vocation, then your work is the very meaning of your life.

Three weeks ago, I went into my job of more than ten years as usual. It was the place where I had received a huge amount of support during our FTD years. The place where I felt safe from the ravages of the bastard disease, if only for a few hours. Work was my savior on those days when my world was closing in and FTD commanded my every waking moment. In a responsible, high-level position, I had to focus on other people and their needs, instead of mine and those of my husband. It gave me a wonderful sense of pride and humanity to be in a place where only those closest to me knew what was happening in our lives and those I served had no clue.

Three weeks ago, I went there as usual, bright and early. Two hours later, I was in my car on my way home from that place for the last time. Ten and a half years finished and over. My supporters and antagonists left behind to move in the “different direction” that, it had been decided, did not include me or my position. It’s ok. I tell you this not to glean sympathy or pity. I tell you this because I am happy that I am healthy enough, mentally and physically to understand what freedom this new turn of events will offer.

It has given me fresh perspective. I don’t think that the decision was intended to please me, or make me happy, but it actually did and does. Now I have the time and energy to devote to –well, whatever I damn well please. Now, I have the benefit of knowing that I have spent the last ten years working towards this moment. Five of those ten years have been spent in grief and loss. But those people, that place, gave me the strength to get through whatever FTD had to throw at me. My work sanctuary sufficed to give me the stability I needed to survive the last five years and I did.

Actually, I did more than survive. Because, despite the best efforts of the bastard disease, I not only survived, I thrived. I thrived because I had the support, the love and the salvation that I needed to get through it all. All those things that you are going through are survivable. I’m pretty sure you don’t think so, I never did. Actually, I never even really thought of it in that way, I simply got through the day-to-day, just like you do. But now, on the other side, I can see that everything I had in place – my family, my friends, my work, were all just crutches that were available to help me. I know that some of you feel that you have little or no support., your families, or those of your loved one having abandoned you in some way, or they just don’t get it. But, even though you may feel alone, be patient, because someone, somewhere will be coming along I am sure. Not in the romantic sense, but a person or persons who will be a support and comfort to you.

Along my journey, not long after Alan died, I met a woman, a minister no less, who had also lost her husband to FTD. The chances of this happening are pretty random, but meet we did and share we did. She was just in my life for a very brief time before our paths parted, but I believe she came into my life for a reason and I am very grateful for that. She was part of my “life in progress” situation.

The FTD path is never easy, and I mean , never. You all have a different story to mine and to everyone else who is caring from someone with FTD. Some of you work outside the home in addition to caring for your FTD’er and that is challenging indeed. At the various stages, some of which only last for a few days, you come up with ways that will ease your path and get through this particular stage.

For example, when my husband’s sense of time was slipping, I would leave for work before he was awake,  prepare his breakfast, leave a note out on the counter to tell him his lunch was in the fridge and put a note on his sandwich in the fridge saying “Lunch”. Phew!  One time my son went over to check on him at 10 am and he had already eaten his lunch. Hm. So my devious plan didn’t work then.

So with FTD, your new mission, should you choose to accept it, is to invent and reinvent new ways in which to keep your FTD’er alive and well. Every single day. If you’re lucky, you may get through a few weeks, or even months, without a significant change. But change will come, as sure as the sun rises in the morning. It will keep you on your toes that’s for sure. Reinvention of yourself and your routines and schedules is the only way to cope.

• A sense of humor will keep you sane. Laugh at the ridiculousness of it all. Cry at the futility of everything, then laugh again in the face of FTD and give it the bird.
• No matter how ridiculous a solution seems, give it a try. You never know. Chocolate ice cream for breakfast? If it gets you out the door to work and them to day care, what the hell? Puddle jumping in wellington boots? Sure. Reruns of “Two and a Half Men” on a loop? Heck yes, if it gives you 10 minutes of uninterrupted time to do something you want to do. Fake ID/credit card? Thank you. When it doesn’t work?- “Oh those things are hopeless, I’ll call the bank/DMV tomorrow and complain”. Kid’s toy paper money? Oh yes.
• Flexibility with work schedule is a godsend if you can do it. I used to go in at 4am so I could be home at noon. Since my husband rarely rose before 8am, it worked. I realize that’s not for everyone, but it doesn’t hurt to ask.
• “Therapeutic fiblets” are invaluable. “The car is in the shop”, “I will call _______ tomorrow”, “That door lock is broken”, “The store is closed” etc etc.

As you can see and you know, being an FTD caregiver is in itself a full time job. Being inventive and creative about your life is a necessary part of it. Don’t be too hard on yourself is probably the single most important thing. No-one ever died from not getting a shower today, or eating vanilla ice cream for three meals a day, even with diabetes. Co-morbidities, or other illnesses that your loved one may have in conjunction with their FTD, become insignificant once you’re faced with the inevitability of FTD. Keeping them healthy is a poor second to keeping them safe.

One of the hardest things sometimes is to do what everyone urges you to do – “cherish every moment”. Good advice indeed, but sometimes that takes work too. Sometimes all you want to do is lie down and sleep, even if it means missing a momentary spark of lucidity. There comes a time when you have to give in to your own emotions and exhaustion and give yourself some succor. Being an inventor is exhausting. You come up with a million ideas, but only one of them works. It’s worse than being on Shark Tank. Your efforts will be dissected and rejected. Your FTD’er will give you that glazed-eye look and your plan will bite the dust. Oh well, on to the next thing.

The constant need for change is defeating too. You are trying to keep all the balls in the air – work, home, children, school, aging parents, and that annoying ticking noise in your car. And then come up with a solution for how to hide that bag of Doritos in a place where it cannot be found – again. If you are like me, your job is a haven of non-FTD related stuff. The people there are demanding in a different way and, for some reason, don’t seem to be nearly as much trouble as the one you have at home. The separation is bliss. Of course, many FTD caregivers don’t have the luxury of going out of the house alone every day. For them, life is a constant loop of invention and distraction, cleaning and hiding. You people are warriors of a different nature. Hardened to the sights, smells and sounds of your love slowly drifting away. I for one feel that I got off lucky in some respects. Going out to work saved me from my own insanity. I salute you for being there 24/7 and giving your all. Caring for someone with FTD is definitely not for wimps and Mission Impossible is handled every day.

This message will self-destruct in one minute. Make sure that you don’t.

 

FTD – World Awareness Week 2015

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

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

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

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

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

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

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

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

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

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

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

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

One memory I have of that room is from a night in 2011, four years after diagnosis and the year before Alan died. He was into the later stages of his FTD and about to start going to adult day care, since he could no longer stay at home safely alone during the day. My sister-in-law, Susan, was visiting and we were all about to turn in for the night, around 11pm. Suddenly there was a loud, gushing sound from the laundry room. we rushed in to find that a water pipe has burst and there was gallons of water pouring into the small room. 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.

FTD – Hello, it’s been a while.

I’m back! Firstly, I’m sorry it’s been so long.  I have not written here since April. Somehow, I feel a little guilty about that. As I have tried to distance myself from the bastard disease, it has become apparent that proximity is not the issue. What has happened to me is that as I have been able to distance myself from my own experience, I have become more attuned to the experience of others. I thought I could leave it behind, but I find I can’t after all.

I was done, but I was done with feeling what it had done to me, but not with doing something about it. It seems funny now that I have had a hiatus from being so deeply involved, it looks different, feels different.

There is so much happening in the world of FTD. Sadly one of those things is that the Facebook group for which I am an administrator –“Frontotemporal Dementias Information and Support”, has grown from 400 members in April of 2014 to almost 2,000 today. The group is comprised of a wide variety of people –caregivers, spouses, adult children, writers, parents, friends, professionals and not least, those afflicted with the bastard disease. Every day, more new members are added. I don’t know if it’s that more cases of FTD are being recognized, or there really are more cases. My thought is the former. This is a good thing in that if more cases are being identified, it means that more professionals are becoming knowledgeable and familiar with the devastating effects of the disease on patients and their families. More cities are forming support groups to help somehow explain and assist with the progression of this devastating illness. I can now look into what’s happening, rather than being entrenched in it. I have a new perspective and I hope that will enable me to ease the way of others who are just beginning to try and navigate the storm.

If you have not read my work here before, some of my earlier articles may help you if FTD has reared its ugly head into your life. I’m not bragging on my writing, just want to help in any way I can to ease your way through the quagmire of confusion in which you will undoubtably find yourself as you travel the path. Some of my earlier work was written in the months following my husband’s death in 2012. I was shocked and unhappy, even though I had known for five years what the ultimate ending was for our life together. The FTD years were a culmination of the forty we had spent together. We married fairly young, and like many of the men and women I met along the FTD way and since my husband died, we spent all of our time during the first three years after diagnosis when he was still highly functioning, in a state of disbelief.

Disbelief is a very common experience at the start. Shock, sadness, anger, denial -all very common, especially in those closest to the diagnosis –spouses, children, parents.

Once acceptance arrives, most people start thinking about the practical things –what will happen? What will I see? How long can he/she stay at home/drive/care for themselves? For many people, just the not knowing what to do is overwhelming. Eventually, you muddle through somehow, since there are just so many things that cannot be planned or anticipated. That’s where support groups –both physical and online can be a boon. Just sounding off to someone who understands and is going through the same kinds of things as you can be so comforting. Even if, like me, you are not really a “self-help group” kind of person and have never done anything like that before.

There are so many variables. Every patient is different, every experience different, because every person is different. But there are some similarities. The earlier characteristics and personality that you know and love so well often change. Dramatically. People who were once gentle and calm become raging beasts with seemingly no thought for anyone else. Apathy and indifference are classic traits of FTD in the early stages but often there have been symptoms for years before anyone really notices that maybe something is not quite right.

Everyone in the Facebook group can tell you their story about driving, food issues (either too much or too little), incontinence, sleeping, screaming, aggression, apathy, crying, and a myriad of other things. Some people have all of these, some people have one or two. There are people in the group from every continent in the world. The variation in experiences is the one consistent thing, as oxymoronic as that sounds. What I can tell you from my own experience is that FTD is predictably unpredictable.

Medical professionals are often baffled, ignorant, condescending or arrogant about FTD. I know that because I am one. Until FTD touched my life, even as a nurse, dementia patients were largely an anathema to me. During and since FTD, I have a whole new perspective and respect for those of us who are touched (which is much too gentle a word for the bastard disease) by the group of dementias known as Frontotemporal Degeneration.

Our family and friends were touched by it too. People came into and went out of our lives. People stepped up, people stepped down. While all that was happening, our family soldiered on. Meeting every crisis head-on, battling every demon that crossed our path. It was overwhelming and infuriating. There seemed to be no-one who really understood. I think now that things are a little better. That there are people all over the world who get it. Awareness is blossoming and people whose lives are and have been affected by FTD are joining together and doing things. The media is finally waking up to us and many people are writing and communicating about the affect the FTD has had on their life and the lives of their families and friends. The governments of the world (even though they often lump us in with Alzheimer’s) are finally waking up to what has been described as a “tsunami” of mental degeneration in one form or another. There is action beginning, if only in a small way. It’s better than what was happening eight years ago when mine and my husband’s journey began. There were four people in the support group I first attended. Now, that group has swollen its ranks to around 100, which is both disturbing and comforting at the same time.

Dichotomies seem to be the order of the day. On the one hand, no-one wants to be in “the club”, but on the other, it is necessary to  commune with people who get it. Previously civil, calm gentle people turn into raging bulls. Raging bulls often turn into pleasant, tranquil people. It’s a mystery. What happens to all the FTD patients I have even know is that there is a strange kind of “Benjamin Button” effect that takes you and your loved one on a journey back through time, culminating in their infant-like dependence on a very exhausted you. FTD will most definitely take a toll on you and the relationships you have with other people, including your loved one. You will experience emotions that you have never felt before. You will do things you never thought possible.

“You can be as mad as a mad dog at the way things went. You could swear, curse the fates, but when it comes to the end, you have to let go.”

–Benjamin Button, The Curious Case of Benjamin Button

And there it is. You will do things you never thought possible. Just like I am now. Carrying on a life without the one person who was the center of my life for thirty-eight years. I am not a different person, but I am irrevocably changed as I have said before. As you battle FTD, as fearsome as an opponent it is, you will discover qualities that are in you that you have never seen before. They were there all the time, you just didn’t know. 

Now that I am writing again from a different perspective, I hope to bring you the power that comes from knowledge. Knowledge and acceptance are two powerful things for your arsenal. Acceptance is not merely giving in to the inevitable, it is seeing that “It is what it is” and forging ahead anyway. Acceptance is a tool that you can use to guide you through the many upsetting, infuriating, frustrating and sad things you will have to do every day. It is not just taking everything at face value and thinking it’s ok. It is questioning everything and realizing that there are some things you just cannot change. It’s not to say that new things shouldn’t be tried, or tips learned to help you deal with the everyday. The enormity of what you are doing is not always apparent while you are doing it.

You are weighed down with love. Love, and emotions like guilt, resentment, anger, sadness. They are heavy loads to carry. especially when you know that there is only one outcome to all your hard work and dedication. That’s when you realize that love is the thing that saw you through. Love is the life jacket that kept you afloat. People an be lifejackets too. You will find them. They will find you. They will present themselves, you just need to keep an eye out for them. They pop up in the strangest of places.

So, it’s good to be back in the FTD world. (What a weird thing to say!) Perhaps that’s what my purpose is –to use what I learned to ease the way of someone else. Sounds a bit airy-fairy, I know, but we’ll see how it goes. I lost the dearest thing to my heart, but the loss built something too. Resilience, battle scars, call it what you will. My husband would like that. He always said I was tougher than him. Maybe he was right.

Benjamin, we’re meant to lose the people we love. How else would we know they’re important t us?

–Mrs Maple, The Curious Case of Benjamin Button.

Or perhaps I am just using the “Benjamin Button” analogies to look at pictures of Brad Pitt? Hmmmm…………………

FTD – from someone who knows

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

http://www.ftdnoflowers.blogspot.com/

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

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

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

                                        — C.C Scott

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

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