The G-8 Dementia Summit

Although this was posted by the Alzheimer’s Association, it brings news of good things happening for all forms of dementia, including FTD, Finally, governments are beginning to sit up and take notice!

Georgia Chapter Blog

Earlier this month the Alzheimer’s Association President and CEO, Harry Johns, participate in the first-ever G8 Dementia Summit hosted by the United Kindom where world leaders acknowledged that the Alzheimer’s and dementia crisis cannot be ignored. All of the G8 countries committed to the goal of identifying disease-modifying therapies or a cure for dementia by 2025, similar to the goal laid out in the National Plan to Address Alzheimer’s in the United States. The Summit participants also agreed to “increase collectively and significantly the amount of funding for dementia research to reach that goal.”

It was clear that all nations must collectively confront the human and economic costs, and take advantage of the scientific opportunities that hold promise for better diagnosis, treatment and prevention. “The G8 Dementia Summit was an unprecedented opportunity to advance progress internationally — to make Alzheimer’s and dementia research a global priority and to promote increased global collaboration. Now we…

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Observe Unrealistic Expectations

Remember what I said about “Acceptance”? Here are some good examples of how to handle the changes that come with FTD…….

The Cathie Barash Blog

a expectation

Hope everyone has had a joyous holiday thus far! If not, then usually the culprit is unrealistic expectations of ourselves and others, which often leaves us feeling overwhelmed, disappointed, obligated, and stressed.

As long as we find ourselves thinking about what we and other people should be doing, thinking, or feeling, we are going to feel upset through our expectations. Therefore, as we go into the New Year, we can observe the shoulds we often live by, and look to embrace more of our wants, and what is authentically true for us instead.

Thankfully, we have the power to review our expectations and create our life the way we want it, without waiting for others to change. Instead of trying to coerce a family member, friend or spouse into changing themselves because of the way we feel; we can focus on what we can be doing differently, and make…

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

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

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

Ocean tide2

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

Then takes some of it away again. Permanently.

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

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

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

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

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

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

This year will certainly bring new behaviors.

New choices. New fears. New decisions.

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

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

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

You won’t need a list of tips.

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

Whatever that is.


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

FTD – Planning for Hope: Living with Frontotemporal Disease


From co-producers Susan Grant, an FTD patient, and her caregiver Cindy Dilks, “Planning for Hope” captures some of the most brilliant and passionate researchers exploring early diagnoses for this rare disease.

Frontotemporal Disease or Dementia (FTD) has been misdiagnosed along with other neurodegenerative diseases that cause dementia in young people in their 40s, at the peak of their careers and in the prime of their lives.

Most importantly, families have stepped forward in this poignant documentary to share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones.

Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families.

Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

This trailer introduces Frontotemporal Disease (FTD), a dementia second in prevalence to…

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F. T. D. – Fears, Tears and Dedication.


I cried today.

I cry pretty much every day actually.

I’m not asking for sympathy, just stating a fact.

It’s not always because I am sad. Sometimes it’s because something just makes me smile. Brings happy memories. Sometimes it’s because I am mad. (not in the psychiatric sense you understand).

Sometimes, it’s just because.

Today I cried at a pot of jam that someone had made and given to me. Ridiculous, right? I cried because she had made it on September 17th. My oldest son’s birthday and also the anniversary of my husband’s death.

Frontotemporal Degeneration does not just degenerate the physical brain cells. It degenerates lives, spirit and entire families.

F = Fear. Fear for the present, the future and everything in between. But fear is conquerable. Sometimes Fear brings out the best in people. It gives you the ability and strength to do things you never thought possible. Deal with things you never imagined. Fear does not always have to drive reticence or pain.

T = Tears. Tears of joy, of pain, of love. Tears can  be great healers.  A release, a solace in the darkness.  Whatever FTD takes away from your loved one, it cannot take your spirit, your love, your fight. Tears are our weapon against the bastard disease. Tears give you the strength to tackle each day, each hour and get to the next one intact. Sometimes, in an inexplicable way, tears can communicate to your loved one. Even when their communication skills are all but gone, somehow, tears get through. Even though they cannot speak or understand most of what you say, tears have a way of demonstrating your frustration, pain or love.

D = Dedication. Yours and those around you who cannot imagine anything else but their unconditional love. Love for your spouse/friend/partner/friend and you. The love that sees you through belligerence, incontinence, weird social behaviors, aphasia and physical disappearance. The dedication is not planned or discussed. It just happens. It may not happen for all your family or friends, but you will feel it. I felt it even through the magic of the internet. I felt every note, photo and sentence written on our Caringbridge page. I would highly recommend  the site ( It will enable your distant friends and family to send words of dedication to you. Your dedication can be seen by them too. When you have family on the other side of the world, as I do, it helps them and you to communicate what is going on and lend support to your dedication.

Frontotemporal Degeneration. It’s just a relatively short period of your life. Doesn’t seem like it at the time, but when it’s over, you think -“Wow! That was five years? (or eight or ten). In the midst of the storm, time passes in slow motion. But afterwards, you wonder where it went.

It was swallowed up by fear, tears and dedication.

I dedicate this piece to all of you who are handling FTD right now.

FTD? Next question please!


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……..

Caregiver Study – Seeking Participants

The Long and Winding Road...

Posting for Laura Lewis, a doctoral student seeking current and former caregivers to participate in a research study she is conducting online. Details below.


Hey everyone, I am not currently a caregiver, but I am an oncology nurse and a graduate nursing student studying dementia after my experiences taking care of my grandmother at the end of her life. I am looking for help with a study I am doing for my dissertation and I am posting the information here…

Volunteers wanted for a Nursing research study on caregiving for a loved one at the end of life!

My name is Laura Foran Lewis and I am a doctoral student in the School of Nursing at the University of Connecticut. I am looking for individuals who may be willing to participate in a research study about family caregivers. The purpose of this research study is to explore the experience…

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Does FTD Preclude Happiness? Let’s See…………..


 Santa smokingIn 1984, there was a U.K. TV commercial that told us that  “Happiness is a cigar called Hamlet”. (I have  tried a thousand times to embed the video clip here, but apparently the person who posted it on YouTube and stole it from wherever, would like to keep it private for some reason only known to themselves. Why post on YouTube if it’s private? And not even yours?).

If you really want to watch it, here is the link:

Anyway, I digress. The series of commercials  – Sir Walter Raleigh placing his cloak over a puddle so that Elizabeth I would not get her feet wet and then her falling down the deep puddle hole. The parking garage barrier coming down on the head of a man showing off his Ferrari and flirting with a passing girl being just a couple of examples. The premise was that even under the most difficult of circumstances,  as long as you had a Hamlet cigar, you would be happy. The background music was always the same – J.S. Bach’s “Air on a G-String” – slow, soothing, mellow.

Of course that was before smoking was banned pretty much everywhere apart from the privacy of your own back yard. 

If only. If only smoking a cigar was the key to happiness.

Anyway, after the last couple of somber posts, I thought I would bring a lighter air to these proceedings and talk about happiness.

Christine Carter ( states:

“In addition to making us feel good, studies have found that happiness actually improves other aspects of our lives. Here is an overview of some of the good stuff that research has linked to happiness.

Ha! Check out bullet point #5!. Coping with stress!. Well, you’re good at that right? Anyone dealing with FTD in their family or a friend has to be good at that.

The 14th Dalai Lama:

“The fact that there is always a positive side to life is the one thing that gives me a lot of happiness. This world is not perfect. There are problems. But things like happiness and unhappiness are relative. Realizing this gives you hope”.

Wow, that’s deep, man.

Deep but relatable and true.

Related to FTD – the multitude of problems it brings are never positive. But there are humorous moments in even the darkest depths of the bastard disease. Somehow, those of us charged with watching over the FTD’ers can find humor and hope. A wry irony develops which sometimes makes you smile.

An example – my husband had an old pair of cowboy boots that he had not worn for years but would not part with. In the middle stages of FTD, he found a new use for them. He filled them with large river rocks and put them outside the back door. Simple really – what else would you do with them? Some people might think it sad or offensive that I would find it funny. But his old, practical self was at work, albeit in a nonsensical way. It reinforced the fact that he was still in there somewhere. And happy.

If I laughed at something he did or said, he would laugh too because he somehow knew it was funny, but not how or why. That in itself is a little funny too. Maybe he was just laughing because I seemed happy to him. Later, it didn’t matter to him if I was happy. So I am thankful for that ‘middling’ time when all was relatively calm.

Relatively. (Back to the Dalai Lama again).

The very ‘normality’ of some of his ideas and thoughts almost made me second guess myself sometimes! He was so adamant that he was doing something the only way possible that he could not understand how it could be any other way. Hanging all his belts and ties over the curtain pole for example. It didn’t hurt anyone and it made him happy – so what the hell?

Eleanor Roosevelt said:

Eleanor Roosevelt

“Happiness is not a goal, it is a by-product”

This is so true in FTD. It’s a by-product of everything else in your life. But mostly it’s a by-product of how you handle those things. Choosing to be happy whatever is going on. You can’t strive for happiness. Even on those darkest of days, happiness can be found in just being together and savoring those moments which you may never have together again – a new grandchild, Manchester United winning the Premier League title. Photographs of times gone by. Music. Movies. All happiness-makers. Just in a different way than before. Simpler somehow. But still of great value.

Looking back, I found a perverse happiness in just taking care of the man I loved for so long. I was privileged to do it. It was my reason for being here, I think. As hard as it was to do. As hard as it was to lose him. I feel that I did the best for him. That I made him happy. So that made me happy too.

I will leave you with a few amusing quotes on happiness:

“Happiness? A good cigar, a good meal, a good cigar and a good woman…or a bad woman; it depends on how much happiness you can handle.”  – Unknown

“A man doesn’t know what happiness is until he’s married. By then it’s too late.” – Frank Sinatra

And my personal favorite:

“Happiness is like peeing in your pants. Everyone can see it, but only you can feel its warmth.” – Unknown

Light up a Hamlet. Who knows? It might just work.


FTD – bringing you the ghosts of Christmases Past.


Christmas Past……..

It was always a big deal in our house. Both my husband and I had great memories of childhood Christmases. We tried to do the same for our own children. I think we did a pretty good job too.  They have wonderful memories of our traditions.

Those little things that every family has and does that seem peculiar to other people. Foods, gifts, the timing of everything – different for every family but alike in its very uniqueness.

Before FTD, Christmas was a joyous occasion. We are not a religious family, but rather we enjoy the spirituality of our togetherness. We always made every effort to be together on that special day. Even when we moved out of state, our boys drove 3 hours one Christmas morning so that we could carry on our tradition. They have flown in on Christmas morning and flown out the following morning.

Even when our sons had families of their own, we somehow managed to incorporate the other families into our usual schedule and us into theirs. We embraced celebrating on Christmas Eve and Christmas Day. We continued our “Boxing Day” sports viewing and re-celebrating.

We never thought of spending it with anyone else or in any other way. We watched “Love Actually” & sang “Do They Know Its Christmas?”


But when the bastard disease came along, all that changed. It took a couple of years, but eventually we had to switch to non-alcoholic beer and wine and re-time some events to accommodate decreasing insight into what was happening.

To him. To all of us.

Christmas Present as we knew it was over.

He moved into residential care on December 9th, after 3 weeks in a psychiatric unit for evaluation. Our big family Christmas was not to be. We had thought it may be our last when we could all be together and had planned for family to fly in from two other states.

But it was not to be. We took it in turns to visit him at the Care Center, so that he would not be overwhelmed.

He had no idea it was Christmas. Not a clue. Just another day that the bastard disease had ripped from his mind.

We carried on our traditions of course. Cooked, ate, drank. Played board games, went for walks, went to the pub. Kept a stiff upper lip and soldiered on.

It felt weird without him.

I felt like “when he finds out he will be really pissed off”.

We were cheating somehow. He was around but not with us for the first time in thirty-five years. And he didn’t even know.

Last Christmas was the first one when he was no longer with us in body or spirit. So another weird one. We kept everything going for our grandchildren. But our spirits were deflated. Now he couldn’t even be pissed off for missing out on the festivities.

We didn’t really know what to do actually. We spent it quietly at home. Nothing joyous about it.

Christmas was always my favourite holiday. Our favourite holiday.  In England , it sometimes goes on for two weeks.

Now, even though I still love the spirit of the season, something is missing. Love actually 2

FTD – No Respecter of Life, Love or the Pursuit of Happiness

Today I got the news that one more person in my FTD support group had lost their spouse. It happened at 3am this morning. He was 58.

2 other members have their loved ones on Hospice care, preparing for the end.

I normally like to try and keep my posts upbeat, amusing and a little cynical. But today I cannot muster any of those qualities.

Yesterday would have been my husbands 59th birthday.
Had he been here.
Which he isn’t.
The old anger has erupted at today’s news. I am usually resolute. “It is what it is” But today for some reason I wept again like I have not done for a few weeks now.

My friend in the group has kept her chin up so well – organizing fundraisers, staying positive. She will be devastated today as was I a little over a year ago. It cannot be explained. It cannot be empathized with.
Because only you know how much it hurts YOU.

The pragmatism with which you have handled so much over the past couple of years deserts you. The long goodbye is suddenly over. The long desolation begins.

The frustration, the confusion, the incredulity takes over.

The love remains of course but is now unrequited. It may have felt that way for a while but you still retained a glimmer of hope that it was still there, hidden by the bastard disease.

R.I.P Doug. Your struggle is over. Cheryl’s is just beginning – again. A new struggle for identity, purpose and direction.

The bastard disease lives on long after it’s stolen away your life.

But it can never take your love