FTD – The Empty Chair

empty chair

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

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

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

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

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


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

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

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

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

AZStateCapitol

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

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

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

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

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

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

Be a rainbow in someone else’s cloud

Rainbow cloud 3

FTD – Bringing New Horizons

Lounging lady

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.

map and compass

 

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.
Looking Glass gif

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.

Frustration

  • 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.

Powerwalk

 

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.

Love drop

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.

donald trump

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.

 

Return to the scene of the FTD crime!

Home heartAfter three years in the wilderness (well, not really, but it sounds better than “after three years living somewhere else”). After three years away from my home, last weekend I took the plunge and returned to where it all began. My war with FTD that is.

Seven years ago, my husband was diagnosed with frontotemporal degeneration. We lived together in the home we had shared with our family for the previous seven years. Five years later, he died. Broken down into a myriad of confused pieces by the degeneration of his brain, he slipped away peacefully at the place he was living, ten months after he had left our home for the last time.

Last weekend, I went back. I had driven by, but never been inside since the day I left, about four months after he moved into a care facility. I couldn’t manage his behaviors at home any longer, not and work to support us both too. I left the house because, well, now I’m not really sure why. I just knew I couldn’t stay there. Maybe because I felt so alone, maybe because the house felt too big. I don’t really know. It felt like the right thing to do at the time. I have said several times that I didn’t think I would ever live there again.

But last Saturday, I changed my mind. It’s allowed, right?

I went back to look at the house since the lady who was renting it had moved on to pastures new. I knew some updating would be required, so I went to see just what needed to be done. All week, I had been going back and forth between the choices I had. Do I rent again? Do I sell? Or – do I go back?

Well, I have decided go back.

I am going back to live there because I found that it was not as emotionally disturbing as I thought it would be. Like most anticipated, maybe even dreaded events, it was not nearly as bad as I had imagined. It actually still felt like home. There were a couple of tearful moments, but certainly not the anguish I was anticipating. The tears came from good memories. From fun and funny times. From love. Love for my husband, love for my family. I realized it was not the house that gave me bad memories, but FTD. Home-Heart

FTD was the bad guy, not my home. Not the place where we laughed with friends, played with our grandchildren, relaxed in our pajamas and laughed at the stupid things that noone else would ever find funny.

FTD was the destroyer of all that, not the house. There are no do-overs with FTD. It’s done now, no going back.

But I can go back to the place where I feel at home.

Oh yes, it needs a little makeover and a new hairdo, but that’s good. When it’s done, it will look different. It will be different. A little like me. Changed forever but with the essence of what it is still intact.  My home.

My husband loved our house.  When we relaxed out by the pool, for a long time we had a favorite CD – Crowded House Greatest Hits. Our favorite track was “Don’t Dream It’s Over”. As I drove away from the house on Saturday it came on the radio.

Whatever you believe, the final decision was made and confirmed…..

HeartHome

FTD observations – “Oh, THOSE people”

“Those people”. You know those people who ruin your life. The ones who, when you have FTD, tell you that you can’t drive, go out alone, cook anything, use sharp scissors and pretty much anything else you want to do.

Angry-Red-Smiley-Wagging-Finger-107x107

Those people are the pits aren’t they? When you have FTD, they make you take a shower and change your clothes when you don’t want to.

Those other people – the ones who don’t live at your house, but somehow seem to control your life, they take away your driver’s license, tell you that your new debit card is in the mail and block your internet.

Those people at the supermarket, they count out your change, but you’re not sure if it’s right or not. Those people at the airport, they tell you to walk through the little tunnel thing and then tell you to stop when it beeps.

If only your mouth worked properly, you’d be able to explain that you’re not a child or an imbecile. It’s just that your brain gets mixed up.

cookies and ice cram

Those people keep hiding the cookies, damn them. And the chips and the ice cream. When you put your boots in the freezer though, you found the ice cream. And ate it. All of it. Yum.

 

When you spoke to those people in the bar, they smiled and nodded. Then moved away slowly. When you asked someone a question in the bookstore, they turned and walked away. Perhaps they were foreign and didn’t speak English?

When you went into the bathroom, those people helped you take off your shorts and underwear. But what is that white round thing on the floor? What do you mean, sit down? You’re standing there half-naked. But what are you supposed to do now? Pull up your shorts and go out of the room. Oh, so frustrating, they just don’t get it, those people.

When you have FTD, those people just don’t get it.

Blackadder-Confused-Look

Frontotemporal resourcefulness – get crafty!

At first, this post was just going to be an uploaded pdf file [find that here –  FTD Resources] – a list of excellent links  for FTD caregivers.

However, this week, many new FTD people have come into my life. With a multitude of issues going on for them, it seems like an endless supply of problems for which there are scant resources.

Although I have the list of links, websites, books etc. it seems that what people need is a particular, down-to-earth, list of how to stay sane in this maelstrom of FTD. I don’t have an exhaustive list of course. Far be it from me to be the FTD guru. (Although I know someone who probably is).

Guru

I don’t presume to know even a minute amount of all there is to know about FTD. Just my own experience and what I see and hear from other people traveling the same path.

You do have to get “crafty” though. Even though it may go against everything you’ve learned in your relationship thus far. You’re in unchartered territory here as far as behavior and handling it goes. You’ve probably never seen some of the things you’ll be or are seeing. FTD the bully makes people do things.

  • Your loved one may behave in ways you never thought possible.
  • They may say things you never thought you would hear coming out of their mouth
  • You will have to do things you never imagined yourself doing.
  • This includes creative fibbing (otherwise known as lying), pretending something is what is not, and getting crafty about your own behavior.
  • You will have interactions with people that once may have made you embarrassed but now are a matter of survival.
  • Your love will be tested to the limit

The key here is love. Love for the person you knew. Love for yourself. Love for what is right.

Love treeUnfortunately, unrequited love is harder to handle.

TEN IDEAS FOR NOT GOING AROUND THE BEND YOURSELF

  1. It is VITAL, d’you hear me? VITAL that you listen to your own body, your own mind, when they tell you to stop, slow down or walk away. It could literally mean life or death. Sometimes, in an aggressive FTD person, walking away is all you can do. As heartbreaking as it is, you have to mentally walk away a long time before you may physically have to.
  2. Take a break. I mean it. Get a respite grant (www.theaftd.org) and have someone else do the caregiving for a couple of days. I know, you have no-one. No-one else understands. No-one else can do it….There’s a million reasons why you can’t. Find just one reason why you CAN. You have to go on. What’s the worst that can happen? They are angry at you for going away? So what? You won’t be there and once you’re away, they won’t care. There is often a genuine fear of abandonment in FTD, but that can come just when you go out to the car or the store. Since time is often irrelevant, two hours or two days, it won’t make any difference.
  3. Get help.There is something for everyone out there. It may take some time and effort, but it’s there. Get someone to help you. Research – call, write, email whatever. Get everything that is due to you. There are agencies that just do that. Match you up with the right services.
  4. Accept. Accept that nothing will ever be the same. Accept that he/she is going or gone. Once you do that, you can cope more easily. If, like I did, you try and keep things normal long after normal is gone, you will become frustrated and bitter. These two emotions will interfere with your ability to cope. Acceptance is not resignation. Acceptance is the strong response to an unchangeable situation.
  5. Don’t try to rationalize. Your loved one is not the brilliant engineer/artist/doctor/financier that he/she once was. For me that was one of the hardest things to understand. I am not known for my ” glad sufferance of fools” shall we say. Not that my husband was a fool, quite the reverse in fact. Like many people afflicted by FTD, he was intelligent, articulate, and quick witted. But it was very hard for me to talk with the child he became.
  6. Agree. Agree with everything they say. You can always back out or change your mind – even minutes later. They won’t realize what you’re doing (see, crafty!)
  7. Blame someone else. I found that “those people” were very useful in taking the blame for just about everything that happened that my husband didn’t want. The bank, the DMV, the government, the doctor, anyone that was fairly anonymous that my husband didn’t know well. The ambiguous “people” at the bank were idiots because, when he lost his debit card (for the third time) they took ages sending him a new one. In fact, it never arrived. Perhaps because I hadn’t ordered it. After my telling him it was on its way about three times, he forgot all about it. Moved on to the next gripe. Probably how many dirty dishes there were for just two people.
  8. Lower your standards. Yes, I know, you like your house, yard, clothes to look nice. But let’s face it, there’s not much point in having a lovely redecorated house if someone’s going to trash it, poop on it, rearrange it or generally abuse it now is there? Better to spend the time helping them get through the day with the minimum of fuss. The mess may drive you nuts at first, but once you feel the benefit of not having to repeat yourself multiple times daily, you will be less stressed.
  9. Respect. When you have been in a healthy relationship with someone for several or many years, you develop a comfortable pattern. This established security is severely threatened, then demolished by FTD. But is difficult to let go. Difficult in the extreme. How can you stop giving your loved one the reverence they deserve and have had for so long? Well, you can’t of course. But the respect and love now have to be of a different priority. You still have them but they are trumped by the practical needs. The cleaning, the dressing, the prompting, the directing. It’s weird to have to show or tell your partner of many years which leg to put in his pants first.
  10. Independence. One of my top priorities was that my husband maintain as much independence as possible for as long as possible. When it was no longer possible, I pretended he still had it. He believed me. And that was the most important thing. That he never felt like he wasn’t doing things on his own, even when he wasn’t. I never let him believe that he relied on me for anything until he was no longer aware of how much he actually did. The only thing that was an issue for a while was money. He could never get used to the fact that he had no income of his own. It made him feel less than a man. But even when I gave him an allowance every week, he would lose it or hide it, then say I hadn’t given him any. A no-win situation, but it passed.

And that’s the secret really. This too shall pass. Everything passes. Each stage or phase within a stage passes to the next, sometimes with barely a day in between for you to catch your breath. But you must. You must catch your breath. The bastard disease cannot be allowed to claim more than one life at a time. There is so little to combat it, but the one thing you cannot do is allow it to claim you too.

Be crafty. Invent new ways of handling it. Get creative and make your life easier. The hardest part is changing from the life you once knew. But you can do it. You really can. Use all your tools.

Love, honesty, respect, kindness, laughter, and tears.

They all help. Somehow you will get around the obstacles and on to the next challenge. Your solution will be crafted with love and so it can do no wrong.

quilled hearts

 

FTD – Can You Feel It?

FTD – Can You Feel It?

indiana04

Love.  It’s all You Need, according to Lennon and McCartney.

It’s All Around, according to the Troggs and Wet Wet Wet.

I have spoken of it many times on these pages. I speak of it frequently in my life.  It’s in my head all the time. There’s no getting away from it.

Even in the deepest throes of FTD, somehow it survives – thrives even.

I happened upon this interesting article about a letter written by John Steinbeck to his son, away at boarding school. The son had written to his father about his deep love for a girl in his class. Asking advice about how he should handle his feelings. His father responded:

“There are several kinds of love. One is a selfish, mean, grasping, egotistical thing which uses love for self-importance. This is the ugly and crippling kind. The other is an outpouring of everything good in you — of kindness and consideration and respect — not only the social respect of manners but the greater respect which is recognition of another person as unique and valuable. The first kind can make you sick and small and weak but the second can release in you strength, and courage and goodness and even wisdom you didn’t know you had.

Glory in it for one thing and be very glad and grateful for it.

The object of love is the best and most beautiful. Try to live up to it.It sometimes happens that what you feel is not returned for one reason or another — but that does not make your feeling less valuable and good. “

– John Steinbeck , 1958

John certainly had a way with words didn’t he?

I especially like the parts about

“an outpouring of everything good in you”

and

“ (it) can release in you strength, courage and goodness and wisdom you didn’t even know you had”.

He could have written it to the caregiver of someone with FTD.

For myself, the love I had for my husband was probably the only thing that got me through those often very difficult times. Once you relinquish the fight and accept the inevitable, your love will give you the strength to handle tricky, embarrassing and downright scary situations.

If, for some reason you have lost the love you once had for them, take courage and strength from the thought that I and many other nurses like me, are able to offer compassion, caring and assistance to those that we don’t “love” in the same way as we do our families. But we love them all the same.

We love the privilege of caring for another human being. We love sharing some of their most private moments. We find the strength to overlook their unpleasantness and rudeness, which we know is driven by fear and vulnerability.  I hope that even if your love for your spouse, parent or friend has waned, you can find it in your heart to do that most selfless thing and care for another person for what will probably be a relatively short episode in your life.

I know that not everyone aspires to be a nurse. I’m not saying everyone can do it. It’s not easy.

It’s not easy even when you love them.

You also have to love yourself enough to know when you can’t do it anymore. There’s no shame in that. You’re human.  Not Superhuman. You’re scared. You’re angry and frustrated. That’s alright. You have my permission to scream, run away, punch the wall.

The last sentence of the Steinbeck quote leaves an indelible mark on me –

“ It sometimes happens that what you feel is not returned for one reason or another — but that does not make your feeling less valuable and good”.

In other words, keep doing what you do – loving and caring. Your FTD’er will probably not reciprocate in a way you would want. Although even up to the end of his life, my husband would randomly kiss me, or make some kind of gesture of love. Well, I like to think so anyway. Maybe he would have kissed anyone who got that close!

When he still had occasional lucidity, he would tell me he loved me with a sadness in his eyes that broke my heart. I really believe that some part of him knew what was happening. The moments were fleeting and became less frequent as the disease progressed.

Keep your love close. It will see you through the darker times. Sometimes it’s a little hard to see and recall, but it’s still there.

Like a little firefly in the dark.

Glowing.

Firefly1

FTD – New Year, New Phase? 5 tips for moving forward.

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The ever-changing landscape of what FTD looks like today in your house. It is temporary. It changes day-to-day, sometimes minute-to-minute.

The impending New Year brings uncertainty, other than that phases will come and go. Each one is completely different to the last. Sometimes, behaviors from one phase carry over to the next, sometimes disappear completely.

Ocean tide2

The ebb and flow of FTD is like the ocean. The tide brings in all kinds of flotsam and jetsam.

Then takes some of it away again. Permanently.

To be prepared for such drastic change, you need to protect yourself and family from the feelings of helplessness and frustration.

1. Accept.  Accept that the changes are inevitable. Accept that they may be here today, gone tomorrow. Accept that there is nothing you can do to alter the course of the disease, only your attitude towards it. Acceptance of “It is what it is” will really help you to handle inappropriate and strange behaviors.

2. Don’t argue. Arguing with a person with absolutely no logic or reasoning is fruitless and frustrating. Going back to (1) above, you have to accept that your loved one has no insight or sense of reason anymore. Sometimes however, I have to admit that arguing feels good, even though you know it’s useless. It helps get out your frustration. Your loved one will look at you as if you have two heads because to them, you are the unreasonable one.

3. Be kind to yourself. When it’s all over, no-one ever says “I wish I’d waited longer to get help”. Or “I wish I had not taken a respite break when I had the chance”. If it is at all possible for you to get away for a few days, do it. Or even just a pedicure, dinner out with friends or day at the beach. You can’t go back and redo it.  In my experience, being afraid to do something of which you think your loved one would not approve or want you to do (leave them for a day) is purely one-sided. a) They won’t even know what it is that you’re doing and b) you don’t actually have to tell them. See item 4) below.

4. Therapeutic fibbing. This tactic may be the single most valuable tool in your arsenal throughout the course of FTD. You have to remember that your loved one, after a certain point, has no concept of time, place (other than your familiar home maybe) or situation. Sometime, they will just be argumentative because that is the phase of the disease they are in. I once asked a member of my support group why she was so concerned about telling her husband that she was going away for the weekend with a friend. She replied that he would not like it. I asked her “What will he do?”.  She replied that he would be grumpy and disapproving”. I said “So what?”. She was leaving him with a carer with whom he was very familiar. So she knew he would be safe and well-cared for. She told him she was going to see a sick friend, went on the trip and he was just fine. The carer said that he never even asked about her. When she returned he just said “Hi” and carried on with what he was doing. Like she had never left.

5. The voice of reason. You will probably give your loved one way too much credit for understanding what is going on. Because that is how it has always been. Each being deferential and respectful of the other’s needs. Other than keeping them safe, comfortable and loved, there is little else you can do. You cannot defer or appeal to their prior intellectual status. Not that you should treat them like an idiot of course, but don’t give them credit for making good choices or decisions. They can’t. Not anymore. You are now in the parental role of making all their decisions for them. That’s not to say you should dismiss what they say (or try to) but merely agree and then do whatever you were going to do anyway. Agreeing is one of the tools.

This year will certainly bring new behaviors.

New choices. New fears. New decisions.

For some of you, it will bring new status. Perhaps this is your loved one’s last year. Perhaps 2014 will bring the last stage.

I’m not trying to be morbid or scary. Just realistic.

You will know if it’s the last year. You will know what you need to do.

You won’t need a list of tips.

You will need all the love you can muster. But you will know that you have done everything you can do to ease the passage to the next phase.

Whatever that is.

Inner_Peace_by_mcbadshoes

I wish you inner peace, love and serenity for 2014.

Frontotemporal Fun ? Oh no it isn’t!

birthday images Today is my birthday. The second one that my husband has not been alive for, the third when he was not with me. Today is also the second anniversary of the day that he left our home for the last time. He went into a facility that would care for his new needs better than I could. A place where they would try new medications and deal with his physical needs. His frustration and combativeness. His lack of insight into the truth. The bastard disease had finally pushed him to new limits of mental anguish. Unable to fully understand what was happening, but alert enough to know that something was. Something that had previously been insidious but now was running rampant through his brain. It scrambled his thoughts and erased his prior life like some brainwashing machine.  Repeated confrontation and insult to an already dilapidated organ.

  • Pleasure takes on a different form in FTD. It becomes more basic. Those things previously enjoyed are erased.
  • Food often becomes a source of obsession. Sometimes the person will only eat one or two specific items for a while. Sweet things are always welcome however!
  • In earlier stages, things like jigsaw puzzles or games meant for pre-teens can capture their attention for a while.
  • People with FTD often enjoy physical activities like dancing, kicking a ball around or walking.
  • Lack of emotional insight can inhibit the ability to experience pleasure.
  • Aphasia or just the inability to express thoughts can lead one to thinking they don’t like anything.
  • Just keep trying different things to eat, drink, do.
  • There’s nothing to say YOU can’t still try to have fun.

Anyway, my blog topic  today was meant to be about fun. Nothing funny about FTD of course. There are moments of humor, but not really fun per se. As the responsible party of the group, you always have to be on the lookout for inappropriate behavior and frustration. It’s never-ending. You never get a break, even when you’re doing something fun, like a vacation or Christmas. Because your FTD’er is never on a break.

The bastard disease doesn’t take a break.

Hotel Del

So here I am at this beautiful hotel in California. Celebrating my birthday with some of my favorite people in the whole world. There are more favorites missing, but we’re still here to have fun. Fun means something completely different nowadays.

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