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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Return to the scene of the FTD crime!

Home heartAfter three years in the wilderness (well, not really, but it sounds better than “after three years living somewhere else”). After three years away from my home, last weekend I took the plunge and returned to where it all began. My war with FTD that is.

Seven years ago, my husband was diagnosed with frontotemporal degeneration. We lived together in the home we had shared with our family for the previous seven years. Five years later, he died. Broken down into a myriad of confused pieces by the degeneration of his brain, he slipped away peacefully at the place he was living, ten months after he had left our home for the last time.

Last weekend, I went back. I had driven by, but never been inside since the day I left, about four months after he moved into a care facility. I couldn’t manage his behaviors at home any longer, not and work to support us both too. I left the house because, well, now I’m not really sure why. I just knew I couldn’t stay there. Maybe because I felt so alone, maybe because the house felt too big. I don’t really know. It felt like the right thing to do at the time. I have said several times that I didn’t think I would ever live there again.

But last Saturday, I changed my mind. It’s allowed, right?

I went back to look at the house since the lady who was renting it had moved on to pastures new. I knew some updating would be required, so I went to see just what needed to be done. All week, I had been going back and forth between the choices I had. Do I rent again? Do I sell? Or – do I go back?

Well, I have decided go back.

I am going back to live there because I found that it was not as emotionally disturbing as I thought it would be. Like most anticipated, maybe even dreaded events, it was not nearly as bad as I had imagined. It actually still felt like home. There were a couple of tearful moments, but certainly not the anguish I was anticipating. The tears came from good memories. From fun and funny times. From love. Love for my husband, love for my family. I realized it was not the house that gave me bad memories, but FTD. Home-Heart

FTD was the bad guy, not my home. Not the place where we laughed with friends, played with our grandchildren, relaxed in our pajamas and laughed at the stupid things that noone else would ever find funny.

FTD was the destroyer of all that, not the house. There are no do-overs with FTD. It’s done now, no going back.

But I can go back to the place where I feel at home.

Oh yes, it needs a little makeover and a new hairdo, but that’s good. When it’s done, it will look different. It will be different. A little like me. Changed forever but with the essence of what it is still intact.  My home.

My husband loved our house.  When we relaxed out by the pool, for a long time we had a favorite CD – Crowded House Greatest Hits. Our favorite track was “Don’t Dream It’s Over”. As I drove away from the house on Saturday it came on the radio.

Whatever you believe, the final decision was made and confirmed…..

HeartHome

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 – Happy Anniversary, you bastard

wedding photo

Today is the 38th anniversary of our wedding. In 1976, we were bright-eyed and eager to see what life had in store for us. I am so glad we didn’t know that FTD was going to invade our lives and destroy what we had built for thirty-six years.

I cried today. That’s not really unusual. I was sad and my dog brought me his bone. That made me cry. I guess it wasn’t far away, under the surface and that simple act of innocent kindness brought it out. It was then that I realized that our anniversary is still significant to me, even though my husband died two years ago. I realized that nothing –time, distance or circumstances will ever change that. People ask me if I’m dating – “You’re still young!” and look at me strangely when I say that it never crosses my mind and I don’t see a time when it ever will. Spending almost forty years with someone that you love so unconditionally and they you, makes that unthinkable.  The things one has to do and endure when caring for someone with FTD  have somehow made me more detached from reality. I can engage in the stuff of life – fun, laughter,smiles, sadness and joy. But I am so changed by my experience that I am almost a different person entirely than that hopeful, full-of-dreams girl that I was in 1976. People have been on the receiving end of this new person and are sometimes shocked I think, by how different she is from the old me.

FTD destroys lives and dreams. But it never destroyed my love. Somehow, I was able to separate the love from the horror. At times, it was as if everything that was happening was not happening to us. I have written about love and FTD many times. It was a driving factor in my FTD experience.  I cannot imagine how I would have coped without it. My own love for my husband, the love I knew that he still felt for me, even though it was masked by the bastard disease, and the love I had for our family as I witnessed their pain. The journey was like walking a path to a destination you never want to reach. As painful as it is, you know that reaching the end will be even more so. And there is nothing you can do to stop the relentless onward march towards your destiny.

In 1976, I imagined my destiny to be somewhat different. White dress, first waltz, flowers and cake. Handsome husband, first home, fun, fun, fun. He only forgot once, after about 3 years. He remembered after he had dropped me off at work. I got the best bouquet and champagne dinner that day 🙂

A year before he died, FTD made him forget too. The bastard disease created another hole in his brain and our anniversary slipped through. That last anniversary we were together, our son came round with a card for us and my husband was devastated that he had forgotten. So my son gave him the card to give to me. That made him feel better that he thought I thought he’d remembered.  Even in the depths of his confusion, he felt the love. One month later, he moved into his first residential home and ten months after that, he died.

Of course, the thirty-eight years were not all fun, fun fun, even before the FTD. We had challenges, just like everyone does. At first, when FTD came along, we carried on as ‘normal’. As you know, the onslaught is so insidious, it is shocking at times to realize that things have changed. Then suddenly –Bam! Your groom/bride can’t speak properly anymore. Or they’re hiding things, or spending all your money. You are inexplicably broke and getting thrown out of your house. Or you are bailing your loved one of out of jail. Thankfully, those last two things did not happen to me, but they do to someone who cares for a person with FTD. The bastard disease has a blatant disregard for propriety, respect for others or socially acceptable behavior.

When you make those promises -“In sickness and in health”, wedding-rings-on-handswhen you’re twenty years old, you don’t really understand exactly what it is you’re signing up for. So when the ‘sickness’ is FTD, those promises are really put to the test. But for me, it was not something I had to think about. Maybe I have innate qualities that I didn’t know about, I’m not sure. But I really don’t think I did anything heroic, or anything that all of you are not doing for your loved one.

So what is the point of my blog today? Other than catharsis, I wanted to share how FTD has uncovered things about me that I didn’t know before. In 1976, I wasn’t a nurse, wasn’t a mother, wasn’t a wife until October 30th. I was twenty years old. No-one even knew what FTD was then. I’m glad I didn’t. I guess the point of my writing today is to try to impress upon you how important being in the moment is. Usually I try to offer some kind of encouragement and advice about how to handle your own and your family’s emotions amid the turmoil of FTD. I don’t think I can do that today. Because some experiences and emotions are so personal and unique, that to tell you how to handle them would almost be an insult. You are you, I am me. I just told you that I am not the me I was. I am irrevocably changed by experience. You will be too. The transformation has already started. Your metamorphosis into the post-FTD man or woman is already under way. You can’t stop it,  just like you can’t stop the FTD. All you can do is go with it. Watch in wonder as it appears. I wish I could liken it to a beautiful butterfly emerging from a chrysalis. But I can’t. I can’t promise you will be a more beautiful you –outside or inside. But you will be different, that I do know. Your life will emerge as something completely new. Post-FTD, without the stresses and strains of the practicalities of caring for someone with a debilitating, terminal condition, you will probably be baffled as to who and what you are.

I wish I had an answer. I may never know the answer. I don’t even know if there is an answer.  I am full of admiration for those of you who are still doing what I did every day. My heart breaks for you because I know what is to come. Now I know. I didn’t know in 1976, thank goodness. I was able to have a full and happy life and marriage. We had many champagne moments. I am so grateful for that. My life is still full. It’s full of sons and grandchildren and other family members. I have grown closer to all of them as a result of what we went through. Going back to an earlier comment ” Are you dating yet?”, all I can say is –why would I want to expose anyone else to what our family has been through? How could they possibly understand our pain. They weren’t there, they don’t know. It would not be fair to anyone, an outsider if you will,  to expect them to understand.

I make no apology for the somber tone in my post today. It’s a sad day for me. Tomorrow is a new day and I will bounce right back and be the new me again.  These days are a reminder of what once was. Of what I had, what we had and did. So it’s all good. I have wonderful memories. Even some of my FTD memories are good or at least funny. But there are many more non-FTD memories. From 1976 until 2012, it was a terrific ride. From 2012 until today, I have been able to reflect and rebuild.  FTD could not take that away from me. I may have been down, but never out. My husband loved the feisty me. She’s still around as everyone around me will attest. Bastard FTD. Ha! Couldn’t take that away.

My husband loved champagne. We drank it at every opportunity. I will be having some later.

Happy anniversary to us.

love champagne

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 & Resilience. Get your Nikes on!

Running shoes

You’ve heard me talk about strength, courage, pain and love in my articles here.

Resilience

 

 

 

…………………Now that’s something completely different.

Imagine you are in the middle of running a marathon. You didn’t have time to train for it, someone just called you and said “Hey, the marathon is tomorrow, you’re in!”

No training, no diet changes, no education, no building up for it.

The marathon that is caring for someone with FTD is a little like that. It can start pretty slowly, innocuously. And you think, hmm this isn’t so bad. You try to pace yourself. everything’s under control. You see the first few miles go by, stretch the legs a little, take a few sips of water. After about 5 miles, you’re into it now. Rhythm, pace, -you know you can do it!

Those first weeks, months, even years for some people with FTD can seem quite manageable. You get a little routine going. You are able to continue many of the things you did before the diagnosis and/or suspicion. Going out to dinner, visiting with friends. Trips, movies, all the good stuff that life is all about.

Then, around mile 18 (or so I’ve heard) you hit what is commonly known amongst runners as “The Wall”.wall

The wall is a fearsome thing indeed. The wall in FTD comes around the middle stages.That time when your loved one begins to metamorphose into someone you don’t know. Then the race really begins.

running gif

You have barely got used to the very fact that something is different and changes will be coming, when bam! Here they are. The changes. The mood swings, the irrationality, the anti-social behavior and well, frankly, the meanness. Then all you want to do is run away. FTD is most definitely not a sprint, its a marathon.  A marathon you haven’t trained for. A marathon with no medal at the end. Sometimes you will have a team with you, other times you will be solo. Most of the time, you will be running alone. Coping with this requires the resilience of a marathon runner for sure.

Resilience is one of those spirits contained within humanity that helps us to endure pain, torture, loss and grief. Resilience is what has helped humans survive for millions of years. You CAN endure. You can and will overcome. I know, I’ve done it. You have what it takes contained within you. It’s all trained and ready to go. There’s no manual. No neat set of instructions. You know your loved one better than anyone. You know what they need. You know what you can give. And just when you think you can’t give any more, you will find a reserve within you that will help you go on.

Resilience. It helps the millions of marathon runners cross that finish line all the time. In the FTD world, the finish line is not one we really want to reach. We don’t want to get to that banner across the street that tells us it’s over. As painful as the race is, we don’t want it to be over.

Benjamin Franklin (not a man who ran many marathons) said:

“I didn’t fail the test – I just found 100 ways to do it wrong”

Your test, your assignment, (should you choose to accept it) is to run your marathon with the heart of a lion, the stealth of a tiger and the resilience of Nelson Mandela. Now there was a man who knew about resilience.  Your life as you knew it is changed forever, just as Nelson’s was. Acceptance is not the same as giving up. Accepting the results of FTD is not giving in to it. Accepting is not resignation. Acceptance is a tool that will help you win through, one battle at a time. One wall at a time. The finish line will eventually be in sight.

The banner across the road will read “Finish”. You will not receive a medal. But you will have the satisfaction of knowing that you did everything you could to carry you and your loved one across that line. Everything you could, despite the blisters in your heart, the pain in your soul and the sweat on your brow.

Medal of the heartHere is a medal for everyone who is caring for Frontotemporal Degeneration right now. I commend your bravery, your love and your resilience.

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

Decisions, frontotemporal decisions……..


DNR2

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

Your love will be tested enough.

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

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

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

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

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

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

So here it is…….

Last Will and Testament.

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

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

Advance Directives include:

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

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

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

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

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

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

Click here to find forms for your state

Guardianship

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

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

Living Will

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

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

DNR (Do Not Resuscitate)DNR

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

Life saving/preserving measures include:

Resuscitation (CPR)Resuscitation

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

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

Mechanical ventilation

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

Nutritional and hydration assistance.

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

Dialysis

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

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

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

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

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

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

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

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

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

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

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

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

Love drop

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

Question mark purple

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