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 -Ever Decreasing Circles

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

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

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

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

Frustration

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

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

Powerwalk

 

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

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

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

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

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

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

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

Love drop

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

eeyore birthday

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. mazeYou 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.

love champagne

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.

Blackadder-Confused-Look

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. grotesqueringmaster

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.

Yes No

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 – You deserve it!

No, of course I don’t mean you deserve to have or deal with FTD.

No one deserves the misery that is wrought when the bastard disease comes a-knockin’ at your door. But you deserve the truth. FTD will steal your life. It will steal your loved one’s mental being and by doing so, take away all that you hold dear.

Speaking of what we deserve, it has been some time since I was in the thick of dealing with FTD. Two years in fact. But in the last two years, and for about two years before that, I over-indulged myself to try and combat the horrible feelings and emotions that FTD generated in me. Over-indulged not with food or alcohol, but things. Like having more things would somehow make me feel better. Shopping and indulging myself. Buying “something nice” for myself because my husband could no longer do that for me. There was a sense of entitlement -“you’re going through a rough time”, “treat yourself”, take care of yourself”. It was all ok. If your husband/wife/partner/friend/parent is mean to you because of their FTD, you have the right to eat/shop/spa/pediwhatever.

At least that was what I thought then. It continues, but I am getting better. shopping

I think twice now about buying things I don’t really need. Even begrudge paying money for things. It got to the stage where i would be shopping and I couldn’t even think of something to buy that I didn’t already have. How ridiculous is that? Not that I am a millionaire or anything. I only bought things I could afford. I wear all the clothes and shoes -honestly! I didn’t go into debt to buy things. 

The “deserving” even extended to my behavior. I felt like my irritability, or thoughtlessness, or sharp tongue would be excused by the fact that I deserved sympathy because of what happened to us. I was wrong. No one that I behaved that way towards deserved it. There are no excuses. I’m sorry.

But I do feel that in the midst of the crisis, you deserve a little leeway.

You deserve whatever smidgen of a smile that someone or something throws your way. Grasp it with both hands and hold on for dear life. It has been said that we cannot let each case of FTD take two lives – the one who has it and the  one who manages it. It will wear you down. you deserve better than that. Your loved one does too, but their needs are different now. You on the other hand, have to somehow maintain some kind of a life. Some kind of sanity amidst the maelstrom. It’s easy to get sucked in to the daily drama. The everyday battle between what you used to do and what is considered ‘normal’, and the reality that has now become your life. Constant accommodation of the needs of another is draining to say the least.

This accommodation is vital so that you can preserve some kind of order in your daily life. FTD’ers rely on habit and schedule. Sometimes they revert to old habits, but FTD has modified what they recall about their habits, so they might only partially do them in the same way, or do them completely differently. An example of this would be when my husband insisted on continuing to “maintain” (and I use the term loosely) our pool and yard. He had been taking care of the pool as it it were another of our children for many years. Once FTD took a good chunk of his brain, he kept the schedule but not the quality of the work. So, in order to accommodate his need to continue and maintain some kind of impression of independence and choice for him, I would let him continue his version of cleaning the pool. I would go out early on a Saturday morning while he was still sleeping and take care of the real work myself – sweeping, chemicals etc. so that he did not know I was redoing it. I would move inappropriately stored items from the kitchen cabinets and replace dirty items from the cabinets back into the dishwasher.

Another way I accommodated his dignity and independence was to surreptitiously give money to the assistant at adult day care and she would ‘pay’ my husband for his help that day, as he was leaving with me. He always thought he worked there and was helping people less fortunate than himself It gave him a sense of purpose, pride and humanity to give back in this way.

Wanting the best for everyone is not altruistic, we do all really deserve the best we can give and receive. I’m not talking about designer handbags or Mercedes-Benz here. Just the peace of mind that letting go of what we have previously considered our just deserts brings. We all deserve that. Accepting what is and relaxing about chores not being done or your loved one wearing weird combinations of clothes (or none at all) will bring you much more of what you deserve – peace of mind.

Peace of mind is priceless in the FTD world. Letting go of the need to maintain the old status quo as far as being houseproud, appearance-centric or proud of material things pales into insignificance if you can just spend that time loving and accepting the new stats quo. Having accepted belts and ties hanging from the bedroom curtain rod and cowboy boots filled with rocks outside my backdoor, it was easier to focus on spending as much time with my husband as possible. Yes, having to redo things is exhausting, but believe me, when it’s over, you will wonder what to do with all this free time you have now.

Accommodation does not come cheap in the emotional sense of the word. It is exhausting, but it is less stressful if you place less emphasis on those things that have little or no value to an FTD’er. If you accept their standards instead of enforcing your own. Their standards are not so bad really. Well, anything involving poo is. Poo is not counted in accommodations. Just clean it up and move on would be the best advice.

Your FTD’er, as you have come to know, is not like a child to whom you can teach good behaviors. They have many years of learned habits and behaviors that are hard to break. You can teach your five-year old that it’s rude to point, or speak with their mouth full, or not interrupt. But your FTD’er? Not so much. Their capacity for learning is pretty much gone by the middle stages. Reasoning and rationalization won’t work either. They can’t do that anymore. So don’t frustrate yourself by trying to explain something.

Make a plan, do what you need to do and don’t try to explain in anything other than the simplest terms. And tell, don’t ask. Instead of “Let’s go the doctor’s/grocery store/restaurant”, tell them “We are going out in the car”. Instead of “Could you please shower/put on your coat/eat your dinner?”, tell them “Get in the shower”. Don’t ask –tell.

You deserve to have the smoothest life possible. FTD will throw every kind of wrench into your plans to divert you. Keeping things as simple as possible will give you some space to keep things moving smoothly.

You deserve to love and be loved. You deserve to have the highest quality time with your loved one as is humanly possible within the FTD environment. Don’t expect too much. Be happy with what is. And if over-indulging gets you through the dark days, so be it.

.Macy's bags

Chocolate or Macy’s, choose your poison.

indulgence2

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”.

Angel and devil

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. Jewel in the crown

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.

 Spa

FTD – Disrespectful in the Extreme

hand kissing

I have been reading and listening to those caregivers who are finding it so very difficult to relinquish the grasp on their long relationships. FTD certainly takes its toll on those.

It’s tough, I know. You live with someone for thirty, forty years and, if there is love, there is some degree of respect. Respect for the person. Not just the outer being that everyone sees, but for the true inner soul that you met, fell in love with and spent at least half of your life with. We have respect in varying degrees for a variety of people in our lives. Parents, teachers, any kind of authority. This is what we are taught if we have good parents and role models. At various points in our lives, we challenge the authority, but in general, we come back around to believing that anarchy just won’t work for us. You can be a hell-raiser for a while, but most people follow a path that holds other people in esteem and tolerates human frailties.

The respect within a loving couple –that indefinable desire to please and honor the other’s wishes and needs –that is a whole different ball game. It begins in the early stages of a relationship when you realize that this person likes you, loves you even, for exactly who you are. Not because they’re your mother, father, sister, brother etc. Not because they have to. Well, they kind of do if they’re your family -right?

This new person that you met, they like you because they think you’re funny, kind, generous, hot. Especially hot if you’re in the throes of teenager/early twenties-hood. Not that hot goes away, just gets replaced by an understanding that it’s not the most important thing. Anyway, respect. Respect is built over the years as you go through triumphs and tragedies together. It is founded on love, bolstered by familiarity and chipped away at sometimes by behavior.

holding hands

And there’s the rub. Once the behaviors of FTD kick in, that’s when the challenge begins. The respect you built over all those years is stood up to by FTD. The bastard disease is no respecter of anything really. Your love, your strength, your once-held firm beliefs that you could stand together and conquer anything.

FTD respects nothing. Not your heart, love, home or family. The respect that you hold so dear is now so severely tested that you will need to find new ways of holding on to those ideals and values that you have built over the years.

  • Stop trying to handle things the same way as you have all your life together. Your joint life is somewhat over. Face it. Your joint life, bank accounts, tax returns, trips, dinners. Joint anything is now so changed beyond recognition that you have to face up to the fact that you are doing this alone. You may have family and friends, but the two of you? That’s done.
  • There will be a time, in the early stages, when you can get your ducks in a row, have your loved one sign advance directives as to their wishes, get your other household affairs in order and so on. But as the bastard disease does its heinous work, you will start to notice that your loved one still thinks that they are capable of making those decisions with you. They’re not. Don’t kid yourself.
  • The decisions you make will be based on what they told you during those early stages. Those times when you sat and cried together about what was to come. Those times when you were in disbelief about the hand you had been dealt. The times when you respected your loved one’s opinions, choices and decisions. Because you always had.
  • The time comes when you have to use that knowledge to guide you through the middle and late stages. And that’s painful. Because you respect them. Or rather, you respect the person they once were and the decisions they did, or would have made. Painful because you don’t want to do it alone. But alone you are, and alone you will decide. You will respect what they wanted. I had a very supportive network around me, family, friends, coworkers, medical professionals. They all respected my decisions because I was very clear about what my husband and I wanted. But I still felt alone.
  • The one person you have always relied upon to support and guide you through life’s bumps can no longer help you. But you still respect them. You still need their input. It is very hard to put that aside and make the leap yourself.
  • Stop asking their permission. They can’t choose anymore. They will say no to just about everything – day care, home caregivers, travel plans, clothing and food choices. Sometimes it seems they say no just for the hell of it. So, don’t ask, tell.
  • Respect their dignity, humanity, personhood. But not their decisions. Five-year-old husbands or wives rarely make good choices for themselves. Drinking, driving, risky behaviors. Reserve the respect for the person you knew. the person you love, but not the choices they try to insist upon.
  • Stop second-guessing yourself. You’ll do the right thing. Good old FTD will make your loved one tell you you’re a bitch/bastard, you’re ugly, you don’t care, you’re having an affair, you’re withholding money/food/pleasure from them. They will spend your money, crash your car, upset the neighbors (who cares about that?). They might even try to divorce you, sell your house, grope a friend, try illegal drugs. They’re not them anymore remember? Don’t sweat it. The FTD would like you to give it everything and then some. It’s already taking everything you hold dear, so don’t give it respect, save that for your loved one’s pride and dignity.
  • Respect yourself. That’s one of the biggest accomplishments you can make in the FTD typhoon.

I respect that you are making this journey. I respect that each of us is unique, our situations similar but different. I respect the differences and make no judgment as to what is right for you. Respect yourself as a wife, husband, father, mother, partner,friend. Respect yourself as a human being with flaws and an identity. Respect your loved one as the focus of what you do but not what or who you are.

Respect yourself.

 

 

FTD observations – “Oh, THOSE people”

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

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

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

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

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

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

cookies and ice cram

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

 

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

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

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

Blackadder-Confused-Look

FTD – Frontotemporal Tastes and Delights

oliver-twist-o

 Food, glorious food!

Food is such an important part of our lives.

Some of us have too much, some of us don’t have enough. Everyone has their favorite. Everyone has the stuff they hate.

The many variants and stages of FTD are related to food in so many ways. Like most phases, the food phase is insidious in onset. You suddenly realize that your loved one is raiding the kitchen cabinets, the cookie jar, the fridge, and eating everything in sight. If they are home alone for much of the day, it may take you a while to realize this. Many FTD’ ers develop an extremely sweet tooth and will devour ice cream, candy, chocolate, puddings and pies.

As is the habit of many of us who have hit the cholesterol and sodium awareness phase of our lives, we are accustomed to watching what we eat. We try to maintain a somewhat ‘healthy’ diet and exercise when we can. Many of our loved ones have always been fit and healthy and remain so throughout their encounter with FTD. So it rather goes against the grain (if you’ll pardon the pun) to rein those habits in and let someone eat and drink whatever they like.

I learned to deal with this via a mentor and expert in all things terminal, including FTD. Her philosophy is “chocolate is love to someone who is dying”. They don’t care if they eat healthily. They don’t even know what that means anymore.

Chocolate

The truth is, many of us are comforted by food. Not necessarily sweets either, although they seem to be popular with FTD’ers. We all have our ‘turn to” favorites. Mashed potatoes, mac and cheese, chicken soup – sometimes it’s something that evokes a comfortable memory or just a general feeling of security.

We are consumed with the preservation of life. But I am here to tell you that my husband would never have thanked anyone, including me, for extending his life one more day in the condition that he was. As healthy as he had always been, he would prefer to eat his candy and cookies and to hell with it.  I am sure that many people in the midst of FTD, if they could tell you, would say the same.

I listened to psychiatrists, psychologists and other people talk about “quality of life”. What the heck is that when you have an untreatable, incurable disease that no-one really knows much about? Comfort should be the only priority. If comfort comes in the shape of a Hershey bar, then so be it. Quality of life, like pain, should be what the patient believes it to be. This may be the single most important thing that you advocate for – what your loved one believed to be “Quality”, when they still understood their life.

Only you can hold out and give them what they want. If your goal is to make their last years, months, weeks, days as pleasurable and comfortable as possible, then, in the words of Marie Antoinette:

“LET THEM EAT CAKE!”

(I always imagine her saying this with “Daaahling” at the end, in a voice like Zsa Zsa Gabor)

Marie Antoinette

At least until they can’t anymore. Then you are faced with another decision. It may be easy for you, as it was for me. I knew, without a shadow of a doubt (and had it in writing), that the last thing my husband wanted was any form of life-extending procedure, such as a feeding tube. Our thoughts were simple. If you need a feeding tube to save or prolong your life and there is no hope of recovery from your dreadful condition, what exactly are we saving you for?

This may sound extreme or heartless, but believe me, saving someone and keeping them in what can only be described as a state of purgatory, with no hope of rescue, is a decision that many people come to regret. I see it every day in my work. Because making the decision to pour liquid down a tube into someone’s stomach, is only temporary. At some point in the not-too-distant future, the decision will need to be reversed. Then you have a completely different set of emotions to deal with.

It feels like you’re killing them, starving them to death. You yearn for the cake days. The days when they would only eat Cheerios or whatever.

As odd as it sounds, that happened to me quite often through our journey. As hellish as each stage was, the next was worse. I found myself longing for days when it was only the clothes-changing that drove me crazy. Or the washing of dishes, or filling boots with rocks. Every time a new, worse period began, I would have gone back gladly.

And when it was all over, I even found myself looking back fondly on days when we drove to Day Care, or I visited one of the different facilities where my husband eventually lived. Without me. Even the most hellish of days was missed. Still is.

Funny what you think is okay. It changes every day.

Cake is okay. Chocolate is okay. Respecting someone’s wishes is okay.

Doing the right thing is okay. The right thing for you. The right thing for the one you love.

It might not be the thing or things you want to do, but that’s okay too.

Your standards of okay are different now.

Whatever, whenever are the golden rules. Long may they reign!

candy cake

Frontotemporal Visitation – yes or no?

Prison barsTo visit or not to visit, that is the question?

You hate to see them that way, but you want to see them.
You feel guilty if you don’t go, saddened if you do.

Keeping a relationship going with your loved one with FTD is difficult at the best of times. Once they are institutionalised, you are faced with a whole new set of decisions.

Just making the decision to ‘place’ them somewhere other than your home is one of the most difficult things you will ever do.

If, like I did, you try to make their new place as ‘homely’ as possible, you may be very upset when they don’t even notice the favorite pictures on the wall. The photographs of your grandchildren. Or a memorable trip you took together.
They won’t notice the cashmere sweater you got them for Christmas.
Hell, they probably won’t even notice if you don’t visit.
That hurts.
It hurts that your efforts to overcome your grief, sadness and anger are often for nothing. It takes a superhuman effort to ‘keep it going”.

Superhuman effort to keep your needs under wraps.

We only try to ‘carry on’ for our own benefit. It’s not selfish, it’s self-protection. We use the practicalities of resolving issues to paper over the cracks of the situation.

It’s out of control. Often you feel out of control. You desperately hold on to everything you hold dear. Your routines and schedules. Your little habits. The things you did together.

The visit comes around and you fit it in to your routine. You have a new routine every week it seems. Your FTD life, albeit changed now that you deal with it outside your house, continues.

If you still work, you focus on that during the times when you’re not FTD’ing. It’s a welcome distraction. Anything so you don’t have to think about what you did. What’s happening in your life.

People marvel at your ability to cope. But it’s all a sham. Another superhuman effort to disguise the fact that inside you are breaking up.

The one person who would help you through such difficult times is the very cause of your anguish. But they can’t help you.

It’s like watching them drowning in sight of the shore, but your feet are in encased in concrete and you cannot run into the ocean to save them. The ocean of FTD is unrelenting. Its tide washes over everything, scooping up your life until it becomes flotsam and jetsam scattered over the sand of time.

Visiting can either be a relief – you are reassured that they are being taken care of physically so that you can share emotions (which they no longer have).Or it can be a trial of frustration and sadness because they no longer acknowledge your caring and love. Sometimes it’s both.

So it’s tempting at times not to go. Just not to go. The physical pain caused by the emotional anguish can just be too much. But then, the guilt comes. Guilt is a powerful soldier of the FTD General. It will follow you around, sit on your shoulder, peck at your head. Guilt is good at steering you back to what you don’t want to do.

But you do want to do it.

But then you don’t.

Yes, you do – oh wait, it hurts.

Visiting is such a dichotomy. You’re damned if you do and you’re damned if you don’t. I can’t tell you not to feel guilty if you don’t want to go. Sometimes you just feel like staying home and being ‘normal’. Relaxing and not doing anything in particular. But there goes that guilt again. “You shouldn’t be doing that! Not when your loved one is suffering so.”

The suffering is yours too. They don’t know they’re suffering. In a place with good care, their needs are being met. They don’t really have ‘wants’ anymore, just needs. And that is one of the things that is so hard to understand.  They don’t ‘want’ anything. They don’t ‘have’ anything. They don’t want their own stuff. They don’t ‘want’ their other life. They don’t ‘want’ you.

They don’t ‘miss’ anything.

And even though you know they are not doing that by choice, it still hurts.

Visits are overrated, I think.driftwood