AFTD Educational Conference 2016 – New BFF’s!

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

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

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

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

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

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

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

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

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

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

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

The four breakout sessions for the afternoon were:

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

 

 

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

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

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

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

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

 

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

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

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

 

FTD – Bringing New Horizons

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

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

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

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

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

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

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

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FTD -Ever Decreasing Circles

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

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

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

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

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

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

 

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

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

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

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

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

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

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

FTD – Mission Impossible!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

TGIF! – Not in the world of FTD…….

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

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

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

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

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

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

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

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

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

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

FTD – No Need To Explain!

I could really write this post in three words –

STOP.  EXPLAINING.  YOURSELF.

But let me elaborate.

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

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

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

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

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

Explanations leave you vulnerable to “No” .

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

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

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

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

You explain because it makes sense to you.

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

Because you love them.

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

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

Just don’t explain why.

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

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

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

Stop explaining.

When you’re down and confused…….

Love the one you’re with 🙂

FTD –the Guilty Party

Let’s just get one thing straight. Guilt is not something people can tell you not to have. How the hell can you erase guilt? It’s an emotion over which you have no control.

“Don’t feel guilty about going for a manicure/taking some time for yourself/eating your dinner”

That’s all well and good, but one voice in your shoulder says “Yes! You deserve it!. Go ahead and do something for you for a change”. The other voice says “What? You’re doing something for yourself? Are you kidding me? You’re a caregiver, for God’s sake. What about him/her? Come on, you shouldn’t be doing that. You’ve got (substitute any caregiving task here) to do”.

So clearly, telling you not to feel guilty isn’t going to work is it? One half of you wants to do what you want to do, because, well, you haven’t done that in a long, long time. The anger and resentment feeds  the part of you that needs, yes needs, something dammit. The other half, the rational side, wants you to do what you do for the other twenty-three hours a day/seven days a week. The stuff that you do for other people. Because let’s not kid ourselves here. You don’t just take care of your FTD’er. Oh no, you feel it necessary to take care of the rest of your family too. Granted if you have small children or teens, then you have to somehow figure out how to give them time and what they need too. But if you have no children or they are grown and gone, then they and your other relatives and friends need to figure out for themselves how they are handling this issue of FTD

Sure, you can help them to understand what is happening and help them to come to terms with it. But you can’t do it for them. They have to figure that out for themselves. That’s where the guilt comes in. You feel guilty about not being able to make it right for everyone else. You feel guilty that you can’t fix your husband/wife/friend/partner. You feel guilty -well, just because. There doesn’t need to be a reason. People can try to make you feel guilty. But actually only you can allow that to happen. You can explain till you’re blue in the face what’s going on. But at the end of the day, the guilt can either break you, or lead you to a way of thinking that will make you a little more free.

Accepting that the guilt belongs to someone else and not to you is a breakthrough. If you can reach that understanding, your life with FTD may be a little less fraught. A little less heavy. Because guilt certainly is a heavy burden, that’s for sure. It can make you yield to suggestions or actions that you don’t really think are right. But pressure from other people can do funny things to you. The heaviest pressure of all is from yourself. Your expectations of how you think you will manage the bastard disease will never come to fruition.

FTD is cunning and clever. It can give you delusions about your abilities. It can make you doubt yourself a thousand times a day. But guilt? Guilt is one of the jewels in the crown of the bastard disease.

FTD, while affecting the mind of your love one, will do its best to guilt you into becoming a cooperative partner in its dirty deeds. It will try to take your independent thoughts and replace them with FTD-centric ones. It will scream “Me, me!” and guilt you into not going to the wedding/party/spa/vacation. just so you can spend more time acceding to its every demand. It’s not your loved one making the demands, it’s the bastard disease.

I can now see how guilty I felt every minute of every day. Every time I enjoyed something my husband would have enjoyed. Every time I held our grandchildren. Every time I watched a movie that I know he would have liked, or laughed at or cried at. I felt guilty, but now I see it was because I was afraid. Afraid of what I knew was to come. Enjoying things without him, living without him.

Of all terminal diseases, FTD can be one of the most cruel. For so long, there seems to be little that has changed. Then one day, you have to remind someone how to put their pants on one leg at a time. You have to order their food in a restaurant because they can’t get their tongue around the words. You have to buy adult diapers for your 45-year old husband/wife. You have to hide the car keys. Guilt blossoms because you feel like it is you that is taking everything away. You that is depriving your loved one of whatever it is.

It’s not you. Just like the behaviors and the speech problems and the mobility issues are not your loved one, they are not you either. The bastard disease, while chipping away at the brain, likes to chip away at yours a little too. Whittling away at your resolve and strength. Piling on the guilt, as if it’s all your fault. Well I’m here to tell you that it’s not. Can you control guilty feelings? No. But maybe you can accept them. Maybe you can see them for what they really are. Feelings. Guilt is only one of a myriad of emotions that you are experiencing as you travel this FTD journey. I can’t tell you not to feel it. Even if I did, you couldn’t. But maybe you can keep it subdued. Maybe you can let other feelings override it a little. Feelings like pleasure, comfort, sadness, anger. It’s not easy.

I talk a good fight, but I felt guilt too. Guilt about “therapeutic fibs. Guilt about taking away the car keys, money and all kinds of independence which had become dangerous to my husband. Guilt about placing my husband in residential care. Guilt about going out to a nice dinner, or the theater or a trip. I couldn’t not feel it. But I found a way around it. A way that allowed me to say “I deserve it”. You do too. But no amount of me telling you that will work. You have to be able to tell yourself that. You do deserve it. Really.

 

Offended? I don’t really care!

So apparently, I have made a huge faux-pas and not ‘credited’ someone in my retweets and reblogs. Despite the fact that my reblog clearly stated “reblogged from……” And my retweets clearly showed the source. Because it was a RE-tweet, right?

Well, I’m very sorry. Sorry that you’re offended. Not because of what I did.  Because that’s your problem and not mine. If you have nothing else to do all day but constantly be tweeting and writing articles, I’m very happy for you, In my world, life is not about taking the credit for what you do, but understanding how much someone else benefits from what you do. Your inflated ego is of no interest to me whatsoever. I don’t care about Twitter ‘etiquette’ – give me a break!

I am educated and understanding of the fact that true, evidence-based writing is valid and deserving of referencing. but please, a blog on a niche topic about which you profess to know all (but are not legitimately qualified in) and deign to share your ‘advice’ with the rest of the world is not really of academic stature is it?

Anyway, rant over.

My actual topic is around people being offended.

Offended by your loved one behaving strangely or inappropriately.

Offended by your apparent blase attitude when it happens.

Offended simply by the fact that they are embarrassed for you and by your loved one.

Don’t care. Please don’t care. If your FTD’er isn’t hurting anyone or themself, social embarrassment is the problem of the observer, not you or your spouse/friend/parent.

I experienced many occasions when my husband’s behavior was just not okay. But he wasn’t stealing, or being rude or hurting anyone. He was just being himself. The new him that I loved just as much as the old him. Just doing what comes naturally. Usually, our social norms and mores take over and dictate how we behave. In FTD though, the development of these skills not only diminishes, but disappears altogether. Until we are left with a 3-year old version of the man/woman that we have loved for so long.

Imagine taking a 3-year old to the movies, or the supermarket or a friend’s house. You don’t expect them to behave perfectly the whole time you are out do you? No, you make allowances. And so do other people. But when your 3-year old is disguised as a 55-year old man, the allowances tend to disappear. As if somehow,you can control your 3-year old Boomer and stop the bad behavior.

It’s just ignorance. Lack of awareness of what’s going on out there. The typical societal response. “If it’s not happening to me , then it’s not happening”

You’ll notice I said “societal response”, not human response. Humanity is not the same as Society. We (especially women) are conditioned to never offend others, be respectful, be “nice”. But our very ‘humanness” is what enables us to take care of our loved ones – through thick and thin, “In sickness and in health, til’ death us do part”. Not societal edicts.

The ignorance is astounding, yes. But what is worse is that even when there is knowledge and information, ‘people’ still want to look the other way. It makes them uncomfortable, seeing ‘less-than-perfect’ human beings. Any parent of a handicapped child will tell you that. Anyone in a wheelchair will tell you that. Sometimes I am ashamed to be part of this race we call ‘human’.

Our society is obsessed with perfection. But perfection is conjured up by human frailty and inadequacy. As a defense against it. The fear of being, seeing or experiencing anything less strikes the fear of God into the hearts of many people.

I don’t care. I don’t care that they think my husband, grandchild, friend, parent, whoever is offensive.

I think they are offensive. Offensive to the true human race. Not the fake one. Not the Hollywood/TV/music world one.

The real one.

The one where people actually love other people for who they are. No matter what happens to them. No matter how their disease forces them to behave. No matter what affliction they have been handed.

So, if my love offends you? Guess what?

I don’t care! 

Decisions, frontotemporal decisions……..

One of the best things you can do when you first see the symptoms of any cognitive change (or preferably before that)  is to sit down with your loved one and have them write exactly what their wishes are. One piece of paper can save you from a world of hurt down the line.

Your love will be tested enough.

Have the dreaded discussion.  If you don’t, even if you know what they would want, when it gets to the time when they can no longer make those decisions for themselves, there are a million (well a lot anyway) legal and moral hoops to jump through. The hoops are mostly made of ‘red tape’. But not having the right paperwork will seriously inhibit your ability to take care of your loved one’s best interests.

Some of the written information may not be official paperwork. It may be just a handwritten summary of what they would like to happen. But at least you will know. At least you will be armed with their choices, their decisions. And not be forced into making them yourself.

Especially at a time when you feel least able to make them.

Having been a nurse for many years before the onset of my husband’s FTD did not help at all let me tell you. Having medical knowledge just makes you more angry at the morons (I’m sorry, I did think that sometimes) who purport to care for your loved one. Obviously they’re not all morons. Quite the contrary. The people who took care of my husband for the last four months of his life did a far better job than I ever could. They were wonderful. As the old saying goes “You have to kiss a few frogs before you get your prince”

Same principle, applied to caregivers. Unfortunately you don’t always have that much time to kiss the frogs. Or appease the morons. Even being in ‘the system’ did not help me. The minefield of decisions was just as terrifying for me. Even with my inside knowledge.

Often before you find the great place for your loved one to end his/her days, you will endure 101 requests for those vital pieces of paper. For example, before they can be admitted to any kind of facility for psychiatric evaluation you will need at least 3 copies of each. Pretty much every person you speak with will want to see them. Especially the Medical Power of Attorney. I thought it might be helpful to have a glossary of the various terms and paperwork that you will need to give you the power you need (no pun intended).

So here it is…….

Last Will and Testament.

I’m sure that you all know what this means, but I just want to make sure that you understand that this is most definitely NOT the same thing as a Living Will or Advance Directive. The Will is generally about documenting wishes in regard to belongings and property.

Advance Directives  are written instructions that document a person’s wishes in the event that they are unable to make decisions for themselves.

Advance Directives include:

Power of Attorney (POA) – this is the document that your loved one signs to say that, in the event of them being incapable of making their own decisions about their life, a designated person (usually the spouse or children or a close friend) has the authority to do so. The Power can be “Durable” –  meaning it  gives the designated family member of friend the power to advocate for the patient, or limited to a specific aspect such as Financial or Healthcare/Medical. In the United States, there may be variances according to State Law. For example, in Arizona, Healthcare (Medical) Power of Attorney must include Mental Health on a separate document. Good to know in relation to dementia.

Even with a signed Mental Health Power of Attorney, I still had to have my husband’s physician sign paperwork to say that he was not competent to make his own decisions before an in-patient psychiatric facility would admit him.

The Durable Power of Attorney gives the authority to make decisions, but does not specify what those decisions should be. Holding Power of Attorney may not give specific rights to a spouse or child if it does not include a Living Will or other Advance Directive. The Medical Power of Attorney and Financial Power of Attorney can be different people. Even if you’re not hugely rich, you need a Will and some Advance Directives, just so everyone knows what to do.

P.O.L.S.T (Physician Orders for Life Sustaining Treatment)

The POLST form is a set of medical orders, similar to a DNR order.  POLST is not an advance directive.  POLST does not substitute for naming a health care agent or durable power of attorney for health care. It results from considered, shared discussions with the doctor, family, spouse, other caregivers, and sometimes the patient to ensure that their medical wishes are clear to all concerned. It takes into account the personal desires of the patient, including religious values, beliefs and goals for their remaining life. This shared decision-making ensures clear and unambiguous care.

POLST  is for seriously ill or frail patients for whom their physicians would not be surprised if they died in the next year. POLST is not for everyone, it is not a Living Will per se. What the POLST does is give direction – doctor’s orders,  to health care providers – EMT’s, paramedics, ER doctors and nurses, in the event that your loved one ends up in an ambulance or the emergency room.

Click here to find forms for your state

Guardianship

If there is no POA – especially for Mental Health, in place at the time a person becomes declared incompetent, you may need to apply to the court to gain the Power of Attorney you need to access your loved one’s funds, healthcare records and make decisions that they are now unable to make. The guardianship process  can be long and drawn out and cost quite a lot. You will need to use a lawyer to help you through the process. Again, there are differences from state to state. When completed, you effectively become the guardian and advocate of your loved one’s interests.

The court will decide if you are fit to do so. So isn’t it better for your loved one to decide first? You can’t assume that it will automatically be conferred on to the spouse or next of kin. If there is no family available, the court will appoint their own Guardian to advocate for the person.

Living Will

This is an Advance Directive that specifies a person’s wishes in the event of a catastrophe that causes that person to be unable to make healthcare decisions. This includes a traumatic event – heart attack, stroke, or in our case, a debilitating illness affecting the mind. Even people who are not sick should have one of these. There is less ambiguity when it comes to the various family members agreeing (or often, disagreeing) on for example, a feeding tube, CPR or other life-saving procedures. If everyone knows what you want, there can be no ambiguity. In extreme cases, if it comes down to “pulling the plug” (sorry, that’s a horrible phrase, but one recognized by everyone) – if it is written and signed by the unconscious or incompetent person, then there should be no arguing among the family about whether it should be done or not.

As you move forward into FTD, it will become very clear that your loved one absolutely cannot make financial or medical decisions (or even what they’re eating for lunch today) by themselves. You will have some tough choices to make. You will have to stand your ground and advocate for them. It will be so much easier if they have done it for you.

DNR (Do Not Resuscitate)

The Living Will should specify exactly what, if any, life-saving measures be taken in the events described above. DNR means that the person will be treated only to ensure a comfortable, natural death, without heroic intervention to prolong it.

Life saving/preserving measures include:

Resuscitation (CPR)

This is when the medical staff will attempt to restart  the heart when it has stopped beating (cardiac death). It includes chest compressions (someone rapidly pushing down on the heart firmly through the chest wall), ‘bagging’ – air being pushed into the lungs manually via a mask over the face and probable defibrillation – an electric shock delivered by a device to stimulate the heart back into action. It’s not pretty. And the outcome is not guaranteed.

Even in a hospital setting, with a witnessed event,  the chances of surviving are quite small. If there are more than about three minutes between the cardiac arrest and the start of resuscitation, there is a greater chance of brain death due to lack of oxygen.

Mechanical ventilation

• A machine that takes over your breathing if you’re unable to do so. This involves the insertion of a plastic tube through the mouth down into the lungs (intubation) You may hear this called an “ET tube”. This is the machine that is referred to when you hear TV reporters and newspapers talk about “Pulling the plug” The ventilator pushes air into the lungs at a prescribed rate and pressure. It is only used when the person is unable to breathe for themselves. While intubated, the person is usually sedated as they are unable to speak and they are often restrained – tied at the wrists –  to counteract the natural instinct to pull out the tube. Some people don’t realize that it is the machine keeping the person alive and not the person themselves. For example, there is a case in the news right now about a thirteen-year old girl who is brain dead, but because her heart is beating, her parents are convinced she is alive. She has no brain activity to tell her heart to beat. The machine is keeping her “alive”.

Nutritional and hydration assistance.

• Fluids and or food can be infused intravenously or via a tube inserted into the stomach. The tube can be inserted via the nose (NG tube) or through the wall of the abdomen (PEG tube). In FTD, this may be suggested to you when your loved one’s swallowing becomes more difficult and eventually goes away altogether. As the swallow reflex disappears, there is a chance of aspiration – the food or fluid gets inhaled into the lungs instead of being swallowed down the esophagus into the stomach. Obviously, this is not good. The resulting ‘foreign body’ in the lungs can cause an infection – pneumonia. Then you will have another decision to make. Antibiotics or not?

Dialysis

• This is a process that removes waste from the blood and manages fluid levels if the kidneys no longer function. If your loved one can’t remember or doesn’t want to drink or eat, they may become dehydrated and have some kidney failure. Dialysis involves the permanent insertion of a two-way intravenous catheter. One side for removing the blood and one for putting the clean blood back in. Dialysis takes about 3-4 hours, 3 times a week, attached to the machine that pulls out and pushes back the blood.

I’m not trying to scare anyone, but clearly, all of these procedures and processes require a great deal of forethought. Going through any of them for a person with FTD would be quite horrifying in my mind.

If people ever asked me about my husband’s DNR status, I would always say – “If we resuscitated him what would we be saving him for? More of the same? Worse?

If I’m very honest, I would have to say that my husband would definitely have preferred having a heart attack and being dead to suffering as he did for five years and then being dead anyway.

One other thing I would like to tell you that many people don’t know is to check your loved one’s life insurance policy. I found out that I had been paying premiums on my husband’s policy for two years and there was a premium waiver clause in the case of terminal illness. I only found out because I was looking for another clause – an accelerated death benefit.

The insurance company did refund the premiums I had paid since the time he was diagnosed.  I just had to send them a letter from his neurologist with the diagnosis and prognosis. Interesting that they had denied increasing his death benefit about a year before, due to his diagnosis but never told me about the premium waiver!

The accelerated death benefit can pay you part or the entire death benefit for documented terminal illness ahead of time. Good to know. Worth checking into.

There is also something called a “viatical settlement” in which you can sell part of the anticipated death benefit of the life policy to another company in return for cash, which you may well need now rather than in the future, to help with medical or caring costs.

You may also want to consider organ donation if your loved one is physically fit and healthy. Or think about donating the brain for research which could help to find out more about the bastard disease and find treatment and cure more quickly.

So there it is. Some things to think about. Rather a lot really.  It can seem quite overwhelming. Yu should also be sure to have your own set of Advance Directives, in the event that something happens to you before your loved one.

But do it sooner rather than later. You need to protect yourself and your loved one. No-one likes to think about it . Some people think it’s morbid.

It’s not morbid. It’s loving, caring and sensible.