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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you.

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

FTD – bringing you the ghosts of Christmases Past.

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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?”

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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 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.