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

AFTD Educational Conference 2016 – New BFF’s!

AFTD Conference 2016

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. IMG_2385Susan 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.IMG_2386

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:

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  • “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.

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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

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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.

 

FTD – Friends, Truth and Disconnection.

friends

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.

Shield maiden

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 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.

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FTD – For 10 points, your first question is……..

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At the end of 2013, I asked if there were specific questions to which you would like me to respond. The responses and subsequent questions and comments were interesting and varied.

Most people seem to want to know what it was like for me. How did I cope? What little things made a difference to me? What gave me strength?

I have also been asked – How long was my husband ill for? How did I know when to move him into residential care? What was that like for me?

Other people seem worried by what moving forward to the next stage will mean. For them, for their family, for their loved one.

There are a million questions it seems. Obviously I don’t have all the answers. No-one does, nor can they. The uniqueness of every person means that we cannot generalize. The general rarity of FTD in relation to other dementias like Alzheimer’s means that the answer for one person may not be right for another. It seems that no two people or their caregivers have exactly the same experience.

So I feel that all I can do, post by post, is to take each of the questions and give a summary of how I dealt with that particular problem, or how someone I know dealt with it. Hopefully, you will find ideas to create a solution to your problem of the day, week or moment.

Number One 10The first topic – what things made a difference for me? Made it easier to cope?

Well, mainly my family and friends. Without them I would have gone completely insane. Their unconditional love and ability to know when I just needed someone on the other end of the phone was uncanny. To just listen to my crying at the other end of the phone. Just to hold my hand without speaking. To go and look at Care Homes for my husband, even when they didn’t want to.

I consider myself lucky in the extreme to have them in my life. My coworkers were amazing. Every day. every week. Every month. Listening, covering for me. listening some more. Shoulders to cry on, hands to hold. Hugs to give.

For three years, I had to put my usual fierce independence aside and take the help that I had always eschewed in the past. I could not do it alone. Don’t ever think that you can. Don’t even try.

I know people who had to do much of it alone. They were not as lucky as me. They had no family to speak of. One woman would tell us at the Support Group that her in-laws would not believe what was happening to their son. They refused to accept his illness. They accused her of controlling his life and keeping him from them. But they never offered to have him stay with them or come over and stay at their house while she went out for a day. They would never accept that he was no longer capable of making his own decisions. Not until the end stages.

Once he could no longer walk or talk or feed himself independently. Once they saw that his wife had to call the local Fire Station to help get him up if he fell down. Once they saw the soiled bed she slept in next to him every night. Once he died in his own home after she had taken total care of him for three years. Sacrificing her life and her work for him. Without them.

Without them. With the help of friends and respite caregivers. Without his family’s help.

Everyone deals with things in their own way of course, but I doubt she will ever forgive them for being so cruel.

So rally your friends & family. Tell them everything. Pull no punches. It is what it is. It’s not your fault. It’s not your loved one’s fault. There will be unpleasant, painful, exhausting times ahead. Rally the troops and figure out a plan. If it’s early days, ask your loved one what they want. How they want to be cared for. By whom. And what they want for you.

Don’t leave it too late for those conversations. With your FTD’er and your family. Don’t put it off. It’s important.

I was asked what made a difference to me during the time I cared for my husband. It was people.

All the people that make up the circle of my life. They were with me then and they are with me now.  They are not just people. They are MY people. I love them.

They know who they are. They love me. When I have red eyes, when I’m sobbing, when I’m complaining, when I was just damn exhausted and could not go on. They helped me go on. They made it possible for me to get up every morning and do it all again.

Thank you.

All of you. I will never forget what you did for me.heart and hands

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

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

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

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

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

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

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

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

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

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

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

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

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

Boxing gloves

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

You want it to be over. Ding! Ding!

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

Over is painful in a different way.