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 – The cloak of Invisibility. Now you see me, now you don’t,

cloak of invisibility

Being invisible can have its advantages. You can get away with a lot of things if people can’t see you. Even if they can see you, being an invisible character in the story of life can be advantageous too. Middle-aged people are notoriously invisible. You see, they just don’t fit in with the beautiful people anymore. Wrinkles, sagging flesh, balding heads, droopy boobs and butts – well, they’re just not “de rigeur”. I find it amusing that in a crowded bar or club (which I don’t frequent that often these days), I become part of the decor. There, but not worthy of attention.

Screw that. I don’t care to be visible to the Kim K’s of the world anyway.

FTD is invisible. The only evidence of its presence is behavior. Behaviors that don’t conform to our well-ordered norms. Social morés dictate that most of the actions we see demonstrated by our FTD’ers will make them pariahs to all but the thickest-skinned observers. But when your FTD’er is behaving acceptably, they become invisible too. Another grey-hair in the midst of many.

FTD itself can only be seen by sophisticated technology. Even then, there’s no guarantee. Only after the bastard disease has completely decimated what remains of the person you have loved and cherished for so long can the damage be seen by those who make it their business to look. That’s the physical  damage of course. The damage that has been inflicted on everyone else around that lacy brain is immeasurable. Invisible. Felt only inside the hearts and souls of those that remain.

We remain, but we are also invisible. To everyone but those who are the very closest to us.

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The person who has FTD –your wife, husband, lover, friend, parent. They are invisible too. Or rather, the inner workings of their brain are. I firmly believe that there is, on some level, a degree of understanding within the FTD brain. A knowledge that they are here, but not with us. A certainty that they are, like unmanned boats, drifting away from their safe harbor. But, because it is invisible, there is no way to know. This must cause fear. I know it would scare me. Maybe that is what incites the behaviors. I know that the degeneration causes lack of insight and inhibition. I know that FTD takes over the brain like an invading army into an ill-prepared country. But the person? What about them? The very essence of what makes us – well, us. Do they scream for attention? Is that what we hear when we look at the OCD? The persistent stacking/folding/calling out in public/being rude?

Or am I giving them too much credit? Is it simply that FTD has destroyed so much that there is little left to cope? Does FTD destroy the soul? The essence of humanity? I know, such a lot of questions. Usually at this point in the article, I give you a list of possible solutions to your problems. A bulleted paragraph of pointers as to how to handle your life. Huh! Far be it from me to pontificate about your life. Only you are living it. I lived my own private despair and hope that I can share what I learned. Usually.

But today, I am more philosophical. Although that doesn’t really help you does it? How about if I share someone else’s words? A slice of how it was for someone who lived and died with FTD? Dr Bob Fay spoke at an Alzheimer’s conference in London in 2003. Here is an excerpt from his speech:

Pick’s is a sodder. It has changed me in subtle ways that outsiders find very difficult to understand, but are all too apparent to my wife and family, It has cut short my career as a General Practitioner; it has stopped me from driving; it has caused much grief and distress to my family. It has a name, but no known cause. It has a very unpredictable course, and it has no treatment. It’s a sodder, it’s a sodder, it’s a sodder. I am not seeking sympathy, but I hope that by conveying the truth about this disease, from my point of view, from the inside, you may be enabled to understand it better. Dementia has no dignity, no compensations: it continues day by day, year by year, to take and take and take, until death comes as a relief to all.

Dementia brings anxiety, anger and grieving to the sufferer. It may be bravely born, but it is not fun; it is not an acceptable alternative lifestyle. Our experience has been that in fact some psychiatrists, geriatricians and neurologists are fairly ignorant of some of the rare young-onset dementias like Pick’s, and if they have areas of ignorance in those conditions, then I suspect that most of the other health professionals who are involved with dementia sufferers, are similarly lacking in knowledge. That is quite understandable and I am not seeking to belittle, after all I was a GP only 8 years ago who was totally ignorant of any dementia that wasn’t Alzheimer’s.

Incidentally what a very unfriendly word “Dementia” is! Technically I must have been “dementing” for about 10 years. To me the term suggests INSANITY (and the dictionaries agree.) To be demented implies being frantic, overactive, out of one’s mind. I haven’t settled on a better term, but I usually either say I have Pick’s disease or that I have a degenerative brain disease. Sometimes I call myself “an old Dementonian” but then people think I’m claiming to have had an elitist education! I think the general public gets misled by the term dementia”.

You can read the rest of Dr.Bob’s talk at http://www.theatfd.org

Anyway. Invisibility. There’s no bulleted list I can write today. mainly because I don’t really know how to help you handle invisibility. I am invisible too, being a fifty-something person. I don’t have FTD (as far as I know). But I have had the misfortune to have seen the effects of the bastard disease on some of the brightest, most articulate and intelligent brains. Invisibly doing its dirty work, like a glass scalpel.

You can remove the cloak from yourself. You can make sure that the world sees what is happening. That is the only way that the bastard disease will ever be defeated. The sword and shields of love will help us. Love and a determination to make people sit up and listen. Become aware. They can ignore us. They can pretend we are invisible.

But we are here. As more diagnoses take place in our booming generation, as more people demand attention from governments, the CDC, society at large, people will want to know. We can tell them “We’ve been there, done that”. “What do you want to know?” “We’ve been waiting!”.

An invisible force. A veritable treasure chest of information. Resources that we are just beginning to realize are and will be necessary. That’s us.

Throw off the cloak. Speak up. Demand attention. Be visible and loud.

Together we are not invisible.

Minions

FTD – Frontotemporal Tastes and Delights

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 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

Nominated for The Liebster Award – I’m flattered!

liebster2_thumb-copyThanks to Wendy at http://yellowmumblog.wordpress.com for her faith in my work.

Although I don’t really think of it as work. I get an idea in my head and somehow it makes its way onto the page. Sometimes I’m not even sure how it happens. The words come tumbling out and arrange and rearrange themselves into some semblance of order.

There have been so many words over the last two years I have finally pulled them all together into a book – “The Dance” – which tells of our journey through Frontotemporal Dementia. The book will hopefully be published in April – watch this space for more details!

Here are the rules for the Liebster Award  :

1. Each nominee must link back the person who nominated them.
2. Answer the 10 questions which are given to you by the nominator.
3. Nominate 10 other bloggers for this award who have less than 200 followers.
4. Create 10 questions for your nominees to answer.
5. Let the nominees know that they have been nominated by going to their blog and notifying them.

So here are the questions I have to answer in response to my nomination for the Liebster Award:

1) If you had to go and live on a desert Island, what 3 things would you take with you? 

If life-sustaining things like water and food are assumed then here are my three things……

i) My laptop! But then of course, to make it work – well, keep it charged anyway, so I would also need a generator. Does that count as number 2)? I’m taking a liberty and saying no!

Having a laptop would give me all the things I love – music, contact with my family, images and the ability to communicate.

ii) A comfy bed – can’t beat a good night’s sleep. Anything is possible with a few good zzzz’s under your belt!

iii) Bug spray – hate being bitten by those buggers.

2) What makes you weep with laughter?

Actually not too much anymore. I smile and giggle, but have not laughed till I cried really for quite a while. The last time I remember was before my husband died. A very childish incident at a Planetarium with my sister-in-law while discussing Uranus……you can use your imagination to figure out how immature we were being!

3) Would you describe yourself as introverted or extroverted?

Introverted. Which will surprise many people as I have a lot of bravado which may give the illusion of an extrovert. In fact, like an iceberg, there is much more that is not apparent above the surface. I think and believe things by which some of my friends and coworkers would be quite shocked I think.

4) Do you like mayonnaise? (I have to ask this, as I can’t stand the stuff)

Yes, but not thickly spread – just a thin layer on a sandwich, or as a flavored side element of something to dip in it.
5) If this was you last week on earth, how would you spend it?

With my wonderful family, at the beach.
6) Do you prefer the city or countryside?

The city for the vibe – people, noise, traffic, bars, the theater, music, good food. The country for peace and quiet, clear air, the smell of cut grass, relaxing in a garden listening to the birds and breezes in the trees. I want it all!

7) Do you have any phobias?

Hmmm no, not really phobias. There are things I choose not to experience, but would not completely freak out if I had to. Being in the pitch black dark is not my choice, nor would be eating anything disgusting like they do on “Fear Factor”.
8) What’s your favourite hobby?

Right now, Zumba! It’s my favorite form of exercise – it’s like a party. The music is intoxicating and it’s a great workout that doesn’t feel like one.
9) Can you roll your tongue?     Yes.

10) What single quality do you most appreciate in people?

Sincerity. I don’t care if you don’t like me – just don’t pretend you do. Being polite and professional is one thing, but ingenuity stands out a mile to me.

So there you have it – the answers to the  questions.

Here are the blogs I nominate:

http://terry1954.wordpress.com

http://dawn7238.wordpress.com

http://myhusbandhasftd.wordpress.com

http://fuckdementiatodeath.wordpress.com

http://alzheimershopeandhelp.wordpress.com

http://wp.me/3cTu0

http://lynnbowerdementia.wordpress.com

There are supposed to be 10 but as one of the criteria is that the blog has to have fewer than 200 followers, it was difficult.  some blogs don’t show how many followers they have. I actually don’t follow that many blogs.

To be honest, I find it hard to believe that some of the blogs I see have thousands of ‘Followers’. I find it fascinating (and sometimes a little dull) – the things people write about. Honestly, some of it is utter drivel. Maybe I’m just not seeing it, but writing about how depressed you are because your boyfriend packed you in is just not interesting to me. Perhaps its a generational thing, but it seems self-indulgent to expect sympathy from a group of complete strangers who don’t give a s**t about you or your life. To each his own I guess. Of course, I am not including any of my nominees in that statement, some of them are going through truly horrible times in their lives and I admire them immensely.

What do some of these people do all day? Don’t they have jobs? I am sometimes a little envious that I don’t get to sit home all day and just write. That would be heaven. Anyway, for now I will have to make do with writing in the evenings when I get home from work.

My nominations are meant sincerely and I genuinely feel something for each of the people whose work I read. They make me laugh, cry and think. They bring me memories – some good, some painful. But they make me feel something. And isn’t that why we all write? To demonstrate emotion?

So for my nominees – here are your ten questions:

1) Have you ever lived in another country? Where?

2) Do you meditate or do something else that is spiritual?

3) How do you like your eggs?

4) Which historical character (real or fictional) would you   like to meet and why?

5) What would you say if you were the first person to greet  visitor from another planet?

6) Favorite sport?

7) Do you use profanity? If not, why not?

8) How do you celebrate your birthday?

9) Why do you write?

10) How would you like to spend your days? (Choice not necessity)

Have fun. I am looking forward to reading your replies.

FTD? Next question please!

HeadQuestionMark

I have written on many topics in the last few months. Some poignant, some funny, some expressing anger.

So now, I would like to know – what kind of things would you like to read about regarding my experience with FTD?

Over the five years that my husband and I spent tackling this heinous disease, we went through many trials and tribulations. We experienced what it is like to move through a broken healthcare system. We saw love and compassion from complete strangers, we saw greed and indifference from others.Qestion mark purple

Obviously, my experience with Frontotemporal Degeneration was singular and unique. Yours will most certainly not be exactly the same. But what I -we- saw, did and had happen to us can hopefully paint a picture for you. You could perhaps, use it to help you decide on which path to take through this disease.

Some things that come to mind are practical issues-food, incontinence and sleeping. Or perhaps end-of-life-issues, about which I have some quite strong views and suggestions. Personally, the biggest challenges for me were not of a practical nature, more the emotional stranglings that take place when your spouse is slowly being dragged from you.

Anyway, please feel free to suggest whatever is on your mind. Have a wonderful weekend –

Heart eye 2treasure every minute……..

Holiday from FTD? Not Bloody Likely! Top Ten Tips for Handling the Holidays

pumpkinsThanksgiving, Hanukkah, Christmas, New Year,  Kwanzaa. Whatever your choice of end-of-year festivity, you may have your work cut out to retain your sanity.

It’s that time of year. For those of us who are deeply entrenched in FTD, it’s the beginning of a season fraught with even more stress that usual.

You have managed to get through the last twelve months of attending to your loved one’s every need and whim. He or she may have deteriorated significantly during that time. There will have been new ‘phases’ every week month or even daily.It’s a lot to deal with.

And now, you’re expected to deal with that and all the other things your family want you to do. The usual.

The usual traveling, cooking, shopping. Wrapping, eating drinking.

Of course, your FTD’er probably doesn’t care about any of that. To him or her , it’s just another day.

You so desperately want to do the things you usually do. The family traditions. The foods you eat, the gifts you give, the places you visit.

Of course, things may be so significantly different now that some of these things are impossible. Maybe they can’t or won’t eat their once-favorite meat, side dish or gravy. Maybe all they want is dessert.

Maybe they want cereal. At every meal.

Traveling may now be impossible. Shopping will require  small army of sitters to watch over your loved one while you go out.

Here’s the biggest tip of all:

Don’t do it.

I’m not saying don’t have Christmas or Thanksgiving or Hanukkah.

I’m just saying forget any ideas you may have about making the holiday like it’s always been. The minute you accept that it will be different, it will get so much easier.

  • Traveling at peak times will be almost impossible if your loved one is anywhere near the middle stages of the disease process. Truculent – (there’s a nice old-fashioned word!)  doesn’t even begin to describe how stressful it will be at an airport, bus station or in your vehicle. Don’t do it.
  • Having large, noisy family gatherings at your house isn’t a good idea either. Being unable to follow conversations, or join in the fun will only lead to frustration for all. Don’t do it.
  • Short visits to friends or family may be ok, as long as you go to them and can choose to leave whenever your loved one gets fidgety.
  • If you have a small family group over at your house, be sure to encourage a nap time for your FTD’er and provide a quiet space they can go to escape.
  • When you serve food, just give them what you know they will eat.
  • Your loved one probably won’t get the “Holiday spirit” idea. It’s just another day to them.
  • Try to keep the routine as unchanged as possible. Fit visits to your place of worship into their usual schedule. Carry on with walks or other forms of exercise that they normally do.
  • Buying expensive gifts for your loved one probably won’t be appreciated or recognized. Go for practical.
  • If you want to get in the spirit and go gift shopping or out with friends, arrange a reliable sitter and go for it.
  • You deserve a break. Don’t turn down invitations to go solo.

And, as always – expect the unexpected. A new phase can start any minute. But don’t live in dread of it. Embrace your family and friends with as much joy as you can. Enjoy the time with your spouse/partner/friend. Make the most of every minute.

As I always say, love, love, love.

The holidays are about love, whatever your choice of festivity.

Give thanks that  you are together for one more year.  holiday image 1

Frontotemporal Fun ? Oh no it isn’t!

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

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

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

The bastard disease doesn’t take a break.

Hotel Del

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

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FTD the magician, now you see them now you don’t. MIA but still here – handling the Black Hole.

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Perseus Black Hole

Photograph courtesy NASA/CXC/IoA/A. Fabian et al.

It has been a year now. A year of missing. Missing my husband, missing my life, missing what could have been. Should have been.

There is a hole in the fabric of my life. A hole where there used to be so much love. Love is still there of course, around the hole. Love from the rest of the people who fill your life.

But the hole seems bottomless. A deep dark hole. A Perseus galaxy – grade hole.

Not to be depressing but even after a year I’m not certain it can be repaired. I’m not depressed, just realistic. I’m actually quite happy considering. Not happy that he’s not here anymore, but okay with my life. Comfortable in my pain. I  can control it now. Can visit it whenever I like without it being overwhelming.

The hole starts to develop of course even before the end of life. My husband was MIA for quite some time before he actually left this mortal coil. The hole starts as a little fraying around the edges. Day by day a few more threads fall off. The speech, the emotion, the insight. Never the love though. At least not in our situation. The love continued until the very end. Even when the hole was huge, the love was still there.

The beginning of the disappearance was insidious and slow. A word here, a word there. An odd look or gesture. And so it began.

How you handle the decline relies largely on your relationship in the first place. If you learn about what is to come, it is still not pleasant, but at least you know what you’re dealing with. Don’t hide from it. It will find you. The bastard disease, as I came to call it, cares nothing for your love. Cares nothing for the hours, months and years you have spent loving, arguing, kissing, irritating, laughing. Cares nothing for history. Or for present or future. Just steals everything away. And puts it down the hole.

So many people tell you things. They tell you to “take care of yourself”. They mean it too. You want to, but the bastard disease gets in the way. Taking care of yourself requires effort and energy. These two things are in very short supply when you are taking care of and watching out for someone else’s interests.

Handling the Black Hole is tricky. So much depends on so many things. Finances, work commitments, family, your own weariness.

  • Once you succumb to the bastard disease and accept its power, you are able to move forward through hard times.Not easy, but doable.
  • You have to accept its omnipotence and inevitability. Your human spirit will still twinkle with the tiniest spark of something. Maybe hope, maybe denial. Just like a hole in the fabric of space.
  • Be realistic. Don’t expect too much of yourself. Heroism has no place in caregiving.
  • Don’t make yourself visit a facility just out of duty. Take a day off for goodness sake. Especially if your loved one doesn’t know you’re there.
  • Let go of guilt. That one’s easier said than done I have to admit.
  • The missing begins long before they are gone. It starts when they no longer call you by your name. I was “Wife” for quite a while. It happens on occasions that you used to enjoy together – holidays, sporting events, family gatherings.
  • You will miss even those irritating little things that you couldn’t stand but put up with because of love. You will miss just calling during the day to talk about how yours is going. Watching banal garbage on TV because you’re both too tired to care what you’re watching. Missing stupid stuff that doesn’t seem stupid at the time – just normal.

So, a year on, the feelings of  missing are still there. The bastard disease is gone, but so is my husband. The hole isn’t any bigger, but it isn’t any smaller either.

Last weekend, we had a small family gathering in celebration of our son’s 30th birthday which happens to coincide with the anniversary. I hate that he has to celebrate his life’s milestones on the anniversary of his Dad’s death. Our small family group did fun stuff and hung out together like families do. We played games, went out, enjoyed each other’s company. The hardest part was trying not to think about those last few days one year ago.

We were all aware of the hole. But we included our missing member by remembering and talking about him. Not in a morbid way, but lovingly. We have to think back a few years and remember the times when we were not missing anyone. Make fun of things he did before the bastard disease took over. It wasn’t easy, but these things never are.

We love you, we miss you, we will never forget you.