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 – Friends, Truth and Disconnection.

One of the hardest things for the caregiver of a person with FTD has to handle is the withdrawal of friends and family from the day-to-day happenings in your world.

“My best friend who does call me or I call him several times a day is the only one and he doesn’t want to come here cause he doesn’t like seeing Peg the way she is. So hurts sometimes”.

– James, caring for his wife.

It’s not enough that you are living in an environment of silence, anger, pain and downright belligerence at times, but you also have to suffer the “slings and arrows of outrageous fortune” . To “take arms against a sea of troubles” is more than you can bear to do. Putting this into perspective (and in non-Shakespearean language to which we can all relate!) – you don’t have the energy or the time to persuade, cajole or help other people to come and see someone they have previously professed to love and respect.

What’s more is that, not only do friends sometimes abandon your loved one, they abandon you too. It’s sad and painful.

“I don’t blame those that distance themselves. Not sure how I would handle it if the roles were reversed. This disease makes people very uncomfortable”.

– Roger, caring for his wife.

You will get through the most harrowing experience of your life with or without them. And there will come a time, much later, when it will no longer be important. They have their own stuff going on. Their own problems, their own domestic issues. Their own fears and failures. I don’t think that makes it alright that they abandoned you in your time of need, but bitterness is a useless emotion. Revenge is not sweet.

You will attain a plateau of indifference. Not that you don’t love them as friends anymore, but afterwards, the shield that you built to protect yourself from the “slings and arrows” of FTD will also protect you against the absence of something that was not as robust as you may have thought anyway.

“I think if we can help people overcome their fears, let them know it’s okay to feel awkward, say something stupid, stutter or act like an idiot, at least it’s interaction, and maybe the next time won’t be quite so awkward. Of course everything makes more sense in hindsight, and it’s nearly impossible to change other people. So even though I’m pretty sure I know why they do it, I’m not sure the change will ever happen if we leave them to their own devices.

– Rip, caregiver to a loved one with FTD

Rip is right, you have to let them know it’s ok. Whatever level of support they can offer. If that’s an occasional phone call, then let that be ok. If that’s dropping you from a circle of friends completely, then let that be ok too. You’re in control only of you. The most oft-used saying in the FTD world is:

“It is what it is”

That is never more true than in every FTD day. And so, the friendless situation is the same. You’re not friendless. It just feels that way sometimes. What it is is different. Different people that you have come to know, those who get it. The ones who are going through the same things as you. Not exactly the same, but relatable experiences. Different daily routines, different perspective. Those things that you always took for granted are different now. Like friends and conversation. It’s like starting a new job. everyone seems strange at first, but familiarity ensues and you make friends with people that you never would have found if it wasn’t for FTD.

It has to be said that friends can also be your rocks, your place of retreat. Those that stick around and hold your hand – physically or metaphorically, can do it from next door or thousands of miles away. They will take your call or tears at any time. One lesson I learned from my experience with FTD was that the people who were around just took to the situation without any request or discussion. They just did it. They behaved no differently towards my husband, treated him with respect and love just as they always had. They still do, even now he’s gone. He had less-than-perfect behaviors even before the FTD and they knew that. We all did. We all do. There’s the rub. We all do. None of us have perfect characteristics or behaviors, with or without FTD. Some people are just “not comfortable” with those things that lie outside social norms.

If I’m honest, maybe I was not either before my run-in with the bastard disease. Maybe I was less than tolerant of the frailties of others. Even without the presence of a terminal, devastating illness, my own behavior could have been better. It probably still could at times. I am laughing right now as I write. Since the FTD circus left town and I said my last goodbye, I have become much more introspective. FTD took almost everything from me, but in fairness, it gave me some things too. I learned more patience, tolerance and how much love I had inside me. I also learned how to not think less of people who are not like me. A hard lesson and a humbling one.

Now, I view friendships and relationships much differently. Or even indifferently. Not for what they bring to me, but for what I bring to them. I am working on taking things a lot less personally and trying to see things from a more objective point. Although, in contradiction to this, my own defiance and defensiveness were the very things that helped me fight for what was right for my husband, so they did come in handy there. I had a very strong shield. The shield was reinforced by the love and support I received from the people who did stick around.

So, to quote the song “You gotta have friends”. You really do. They just might not be the ones you expect.  Lending a hand comes in many forms.

 

 

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.

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…….

 

 

TGIF! – Not in the world of FTD…….

So, Friday has rolled around again. The weeks go by so quickly, it’s hard to keep up sometimes. When you’re floundering around in the quagmire of FTD, one day flows into the next, with little difference between Tuesday and the weekend. So, just like the Dowager Countess from “Downton Abbey” you don’t even really know what a weekend is anymore. Of course, her excuse was that she had never worked her whole life, so there was no reason for a division between the days of the week. For you, living with someone who doesn’t even know what day of the week it is, will make you feel that it is irrelevant too.

Time is often irrelevant in our FTD world. It is meaningless to our FTD’ers, and our own timekeeping is reduced to when the next meal/diaper change/toileting rendezvous is to take place. Even though I continued to work outside the home when I was caring for my husband, once I was back in the safe confines of our house, my world was completely different. It was important to him to maintain his world so that he felt he had control. As the disease progressed, his control and obsessive behaviors became a lifeline for him. He clung to familiar routines and patterns because they brought him comfort. But although he would “tidy” the house, most things were not in the right place. I didn’t mind. The state of my house was never quite as important to me as the state of my husband’s mind.

Since I work in a hospital, I am well-accustomed to orderly chaos. We refer to our work as “predictably unpredictable”. All the things we love about it – the wide variety of people we meet, the multiple skills we are required to use on a daily basis, the “no-two-days-are-the-same” part are also all the things we dislike about our work. It’s an amazing dichotomy of a love-hate relationship. Of course, it’s all about control. Nurses are no different to anyone else in that regard. But our world is changing fast, and as healthcare consumers (pretty much everyone) are becoming more knowledgeable, so we must change our approach to caring for them. No longer can we say “just take this pill/do this/go here” anymore, because people ask “Why?”. I think it’s a good thing, but it’s hard for some nurses who have been around a long time. 

People should be more inquiring. People –you –should want to know everything you can about things that affect you. When it comes to FTD, you probably know more than most of the clinicians you meet. So, when it comes to trying to make sense of what has now become your new “work week”, and the trials that it brings, it is necessary to define exactly what now divides up your time.

If you still work, you may have to find a daycare center for your loved one to attend, or someone to come into your home. If you are able to stay at home, you will need to have a plan as to how you will maintain some kind of order among what will at times be chaos.  A schedule to organize and help your FTD’er to maintain some kind of control for him/herself. Holding on to dignity and a little control will go a long way to helping them to feel respected and valued. Even when they may not be able to talk well any longer, holding on to the last vestiges of something they understand and feel comfortable with will help you too. As the FTD progresses, this will become more and more important to both of you.

You can still have that Friday feeling. You may need to tailor the events of your week a little, but you can make new rituals to share –having special coffee or foods only on Saturday and Sunday, for example. A walk in the park, or going to church as long as your loved one’s behavior will permit. Just find something special that you both enjoy. When it comes to food of course, it is likely that you are going through a phase where your loved one will only eat one kind of food. And that’s ok. Give them their M&M’s or their ice cream, or whatever it is. But make sure that whatever it is they’re having, you’re having your special “Saturday treat”.

Le weekend, as the French say, has long been revered by the working classes as a special occasion. Not having to go to work for two whole days is a treat indeed. But when you care for someone at home, the pleasure of that break is denied you. When you live with someone for whom days of the week no longer has meaning, it takes a special effort to stop the days from running into one another.

  Imagine having nothing to do. Nothing! I’ll bet you can barely remember what that’s like. Before FTD, lazy Sundays reading the papers in bed, strolling aimlessly, calling in at the pub. All seems like a long-forgotten dream now. Your FTD days are full. Your FTD weekends are full too. Try to make them at least a little bit full of something for you. If you can make them full of nothing by having your loved one visit someone else, even better. Spending time alone in my own house is a pleasure that  I longed for many times when in the throes of FTD. Just being alone in my own house. Heaven.

Anyone who has never had that feeling cannot even imagine the yearning to just be in your own space. Alone. It can be draining. The 24-hour vigilance. The 24/7/365 “attendance”. The constantly being on call at every hour of the day and night. We need help. Don’t ever turn it down, even if you’re feeling ok today. Because tomorrow you might be in your yearning mood again. Grab every offer with both hands and run. And don’t look back, at least for a few hours anyway. Your loved one will survive. Even if they’re upset, it won’t last long. They’ll get over it and quickly. And if the person who offered is enlightened by their experience, they may offer again. (Or not!)

Even though you know it won’t last forever, you are only human. You need to time to yourself now. I know from personal experience that there will come a time when you will be by yourself, sometimes more than you would like, even yearning for those chaotic FTD days. It’s a double-edged sword.

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.