FTD – The Empty Chair

empty chair

Back from a wonderful vacation, I am sitting here this morning, reading my email, checking my bank account, generally loafing around drinking coffee. I came across several new posts on a Facebook Support group page of which I am a member. The sadness, anger, grief and frustration reminds me of what once was for us and also how thankful I am that part of my life is over. I also noticed that since I joined the group over three years ago, the numbers have risen from a little over 400 to more than 2000 today.

The same issues and questions arise on a weekly basis – “my husband keeps escaping at night”, “my wife uses the ‘F’ word frequently in public”, “my mother does not acknowledge my new baby”, “how do I get my loved one to eat anything but Cheerios?”. It is tempting to comment about how the issue has been discussed previously in the group, but these “new” people don’t know that. They are caught in the maelstrom of just trying to get through every day. Fighting against apathy, fury, cursing, incontinence and constant pacing. It is hard to see outside of your cage when every fiber of your being is just focused on keeping everyone safe and surviving with your own sanity intact. The endless days morph into one long purgatory, all while watching your previous life disappear.

I conjure up in my head, some way to consolidate all the things we know. All the tips and tricks that the ingenious care partners come up with every day, in order to make their lives a little easier. To maintain independence and dignity for their loved ones as long as possible and to maintain comfort and safety, health and wellness for all concerned. It would be a mammoth task and would take someone far wiser and knowledgeable than me to write. I am not a clinical expert, nor did I face many of those challenges on my own journey with my husband. since every FTD patient’s path is different. It would be difficult to have the perfect guide. There are many, many tomes out there that talk about “dementia care” and “caregiving”. I have read some of them, but often find them a little patronizing and authoritative. I think what’s needed is practical advice for sure, but also incorporate the humor, humility and understanding of the sadness that accompanies taking care of someone you love.

I think that perhaps I would be a little reluctant to even take on this huge task because 1) there is a potential for rejection (I am only human after all ha ha!) and 2) I cannot even come close to pretending to know even one-quarter of what there is to know about FTD. So I guess I would really need to know from all of you, what would be the most helpful? Most caregivers have little time to sit and read a book or watch a video, so how can this information be best communicated? Quick-read lists? Page-a-day bullet points? I would love to know.

It occurs to me that in the three years since I started talking to these wonderful people in the FTD world, little has changed. Much has been discovered about the condition and physiology of FTD, but nothing about how we can treat or even cure it. Progress is slow indeed. So the focus needs to be on education and awareness, on talking endlessly about FTD and its effects. Susan Suchan, a courageous woman who is diagnosed with FTD and early Alzheimer’s disease, fights the good fight on a daily basis. She puts herself out there, faces her demons and talks openly about what her life is like with her constant companion, the bastard disease. I can only aspire to the level of strength and dignity she shows us.


My vacation was tinged with more than a little sadness. I traveled with my husband’s younger brother David, and his wife Lydia. We have a very close relationship, both before, during and after FTD slapped us in the face. Throughout the trip, I was very aware several times of the empty chair that was usually present at the table where we were enjoying drinks, a meal, or  show. Just laughing together as we always have. Tables are usually set for even numbers of people. Since there were three of us, or five if we were joined by another couple, I was acutely aware of the space where my husband would have been. I’m pretty sure David felt it a couple of times too. The four of us always had such great times together, it would be hard not to. It didn’t spoil the trip, we still had fun and laughed a lot. It made me smile that we carried him to that place in our hearts and included him in our conversation and jokes. People we met always asked where he (my husband) was, assuming I was separated or divorced until we explained our relationship.

Since I returned, I have reflected on the comments and responses I received from those people. They meant well of course. Sympathy and smiles usually. When I jumped back onto Facebook this morning and read the anguish and pain of those still in the trenches of FTD, I realized that sharing our journey is more important than ever. Sharing the frustration and hurt so that others understand, even though I still don’t. Of course, on vacation, that is not what people want to hear. They smile and nod politely when you explain that your husband died. I did not share the causes or reasons: or at least, I did not go into great detail –they don’t really want to know. Neither would I in their situation. But the experience reinforces that we exclusive FTD club members have to look to ourselves for support and help.

Hence the desire to produce some kind of tangible assistance. We say that if you have met one person with FTD, you have met one person with FTD. The uniqueness and singularly different behaviors, conditions and attitudes means that there can never be a one-size-fits-all solution. Even in the heady, hoped-for days to come when there will be a cure, or at least some kind of treatment, it will never fit everyone. Our unique human DNA means that no single solution will help everyone. So, right now, the best we can hope for is better understanding and awareness, and better resources with which to manage the daily horrors and heartfelt misery which sometimes, often — engulfs the FTD caregiver.

I feel so very thankful and fortunate that I can take vacations and generally enjoy life, different though it is from how I thought it would be.

AZStateCapitol

Yesterday, Sunday June 12, I had the honor of speaking at an event at our State Capitol building. An Awareness vigil to bring FTD to the forefront as we are part of the “tsunami” of dementia – Alzheimer’s, FTD, CBD and all the other sub-types. Our Governor has declared June 2016 as “Alzheimer’s Awareness month” in Arizona. The Capitol building will be lit up in purple for the whole month. Hopefully, this will be an annual event. Governor Ducey made an official Declaration to that effect. The Mayor of Tempe, Mark Mitchell,  has declared his city as a “dementia-friendly community”. Progress indeed. As different as we know FTD is to Alzheimer’s for many reasons, we are such a small number, relatively speaking, that the only way we can bring attention to ourselves is to be a part of a much bigger effort to combat all types of dementia – young and older-onset. We FTD people can be a little precious sometimes about our sub-type. “It’s not like other dementias”, which is definitely true. However, we cannot isolate ourselves from the potential publicity, funding and general awareness that must surely come. I plan to keep moving forward with that goal in mind, always aware that the empty chair is the one that will bring me the most power and the courage to speak out.

The empty chair needs to be filled with love and understanding in honor of our loved ones’ fight against the bastard disease and others like it. Awareness is everything. The behaviors and challenges that arise from dementia seem insurmountable at times. Overwhelming for those who are constantly struggling to keep it together -raise children, care for aging parents, hold down full-time work, pay bills, hold on to their own sanity. Feeling the burn from family members and friends who desert you can be the ultimate insult. Shunning by members of a less-than-educated society can make the isolation one feels even worse.

So what if someone points at you in a restaurant? So what if someone is speaking louder than is usually considered appropriate? Hell, people without dementia do that all the time! People chat loudly on their cell phone in public like they were in their own house, even at the movie theater. FTD’s childlike behavior is regarded with uncomfortable sideways glances, table manners suddenly become the focus in public -like everyone eats with etiquette anyway these days. It can seem as though every little foible that develops from FTD is a reason for others to regard someone as inferior. Caregivers have to develop a pretty thick skin to ignore that. The shame and embarrassment of public outbursts, incontinence or inappropriate behavior is constant. Let them stare. let them tut-tut. Let them sit in your chair for a day. Then let them tell you how they “had no idea!” That they did not understand what you are dealing with on a daily basis. Then and only then do they even come close to having a right to an opinion.

I would swap the empty chair at my table for being able to stand proud and give rebuttals to remarks or just give an onlooker “the look”. You know, the look you used to give your kids when they were about to start doing something in public that they shouldn’t.

The empty chair at my table is reserved for those with understanding, empathy and love. It is not for the faint-hearted, not for the weak.  It is built  with strength to love and support those who go on, fighting every day for awareness and understanding, for resources and education. Many people sit in the chair. They can never replace the one who left it, to whom it will always belong, but the new people who briefly sit there bring me hope and strength.

The keynote speaker at our Awareness vigil yesterday spoke of the statistics and data surrounding dementia; of the sheer numbers of people who will be affected by dementia in the years to come.  Those diagnosed and those who will care for them. Shouting about it now may help to deal with it all, but we have to do it now. This is not something that can wait. It’s here, it’s already started. Without adequate resources for care, entire families will succumb to hardship. We cannot let that happen. I for one will use my knowledge and strength to raise the banner of awareness. To quote Maya Angelou,  I hope I can –

Be a rainbow in someone else’s cloud

Rainbow cloud 3

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 – Only the Lonely Know The Way I Feel Tonight

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“I have lost the one person with whom I could share everything. I still talk to him like he understands but he just looks at me. Lonely doesn’t begin to describe this feeling. My biggest fear is that I have not cultivated enough close friends to sustain me when he is physically gone. There will be a lot of empty hours to fill” – Christina, caregiver to her husband.

These are the words of someone who is caring for a person with FTD. Sometimes, when you get caught up in the day-to-day life of a caregiver, you lose sight of yourself and reality.

Dealing with constant observation and supervision, food fights, diaper changes and walks keep one busy. Akin to the life of the parent of a toddler, one often yearns for a little peace and quiet. But after all that, after the night comes and calm is present for a short while, the pain of not having your partner to bounce the day off sets in.

Wanting to take advantage of time when you are not needed to guide what can often seem like a military exercise is natural of course. A little time to yourself, quiet time to just sit and do nothing seem like a pipe dream. But when it happens, you don’t really want it. All you want is to have those times back when you sat and talked About nothing, about everything. You just want it back.

“Conversation, I think that is worst. I spend all day talking to someone who never answers me back. Or seems to understand what I’m saying. And then when I do get her to bed and have my quiet time is when it sets in. Oh well the life of FTD” – James, caregiver to his wife, Peggy.

The quiet brings different feelings too. Pain, anger, sadness. Left to your own devices, you begin to dwell on how things might be different if it weren’t for the damn FTD. Conversations about your day, your work, your kids, your friends. The vacation you’re planning, the honey-do list.

Fear and dread overwhelm you. Fear of what you know is to come. Dreading the end result of this bastard disease. But still you endure. Still you go on, because – well, what else can you do? This mission that you have accepted has no defined beginning or end. It just morphs into a total disruption of your life. Eats up your love like an insatiable demon and forces you to think of the unimaginable.

“I’m always torn between being grateful for the peace and quiet so I can relax from the responsibility/demands for a bit, then the lonely crawls in and takes over.” – Lynn, caregiver to her husband, Len.

Guilt can be a powerful emotion during these times. You long for the times when you felt “happy”. Remember those? Happy is hard to define until you don’t feel it any more. Then you know. You know exactly what is is once its gone. And if you do happen to have a smiley moment, the guilt will jump up and slap you in the face. “How dare you feel anything but duty, loyalty and subservience at this time?”  Laughing? Don’t you dare! The FTD guilt police will be after you!

All the negative emotions you feel – guilt, loneliness, emptiness, are far surpassed by what you are achieving every day as someone who fights this evil disease. Yes, you’re fighting. You know you can’t win, but you will give it a good run for it’s money. Being alone when you are with someone is absolutely soul-destroying. A form of torture in my opinion.

“That was my worst feeling. Being lonely even though my husband was right there.” -Michelle, caregiver for her husband.

Even commenting on something you are watching on TV, or see in the street returns little to no intelligible or understandable response. It’s like solitary confinement, except you are allowed to go out. Those little private jokes you shared belong only to you now.  Even menial things around the house can become a trigger for loneliness. The chores that your other half always did suddenly don’t seem to get done anymore. It takes you a while to notice, but one day, the plants in the yard are all dead, the pool isn’t cleaned, or the laundry isn’t done, or you have no dinner when you get home. It comes as quite a shock, that they don’t remember how to do those things anymore.  It’s not important to them. Not as important as where (and when) their next meal/snack is coming from, or where their money is. How did that happen? Their ability to think of anyone but themselves drives your loneliness. As they withdraw into their FTD world, so do you into yours. You have no choice.

‘The other night our dog started barking. I had to wake up Ian to tell him I thought someone was outside. He ever so slowly got dressed, went to the toilet then strolled out and then asked me what I wanted him to do? I sat alone crying because it made me realise how truly ‘on my own’ I am now.”  – Vicki, caregiver for her husband, Ian.

I know that you know all this if you are or have been a caregiver of someone with FTD. I don’t have any magic answers, but I do have the advantage of hindsight. Although I can’t tell you how not to feel, I can tell you that with each phase and stage of FTD, as your loved one’s behavior and level of withdrawal changes, so will your resilience. Your strength will come from those of us who have gone before you and survived. Think of it as a marathon, with some runners just finishing and some just beginning. You will get to the finish line in the end. It’s not the end you want, but it is an end. You will handle the cramps and blisters along the way, because you are travelling with someone you love and they need you to help them reach the finish line. If you don’t love them, then I admire you even more, because this is not a journey for sissies. This marathon is only for the stout of heart and those with levels of determination that would defy gravity.

The loneliness of the long-distance runner cannot be underestimated. Take heart from the people on the sidelines, cheering you on. They may be people you know, or total strangers, but they are there, waving their flags and handing out cups of water.

As you escape into your quiet world tonight, when the tumult of the day has finally fallen into a calmer place, close your eyes, breathe deeply and exhale the loneliness. Feel it leaving your body and just enjoy the peace. For tomorrow will bring new challenges, new belligerence, new meanness.

You can do it. I know you can.

Breathe.

Spa

TGIF! – Not in the world of FTD…….

So, Friday has rolled around again. The weeks go by so quickly, it’s hard to keep up sometimes. When you’re floundering around in the quagmire of FTD, one day flows into the next, with little difference between Tuesday and the weekend. So, just like the Dowager Countess from “Downton Abbey” you don’t even really know what a weekend is anymore. Of course, her excuse was that she had never worked her whole life, so there was no reason for a division between the days of the week. For you, living with someone who doesn’t even know what day of the week it is, will make you feel that it is irrelevant too.

Time is often irrelevant in our FTD world. It is meaningless to our FTD’ers, and our own timekeeping is reduced to when the next meal/diaper change/toileting rendezvous is to take place. Even though I continued to work outside the home when I was caring for my husband, once I was back in the safe confines of our house, my world was completely different. It was important to him to maintain his world so that he felt he had control. As the disease progressed, his control and obsessive behaviors became a lifeline for him. He clung to familiar routines and patterns because they brought him comfort. But although he would “tidy” the house, most things were not in the right place. I didn’t mind. The state of my house was never quite as important to me as the state of my husband’s mind.

Since I work in a hospital, I am well-accustomed to orderly chaos. We refer to our work as “predictably unpredictable”. All the things we love about it – the wide variety of people we meet, the multiple skills we are required to use on a daily basis, the “no-two-days-are-the-same” part are also all the things we dislike about our work. It’s an amazing dichotomy of a love-hate relationship. Of course, it’s all about control. Nurses are no different to anyone else in that regard. But our world is changing fast, and as healthcare consumers (pretty much everyone) are becoming more knowledgeable, so we must change our approach to caring for them. No longer can we say “just take this pill/do this/go here” anymore, because people ask “Why?”. I think it’s a good thing, but it’s hard for some nurses who have been around a long time. Nurse Ratchett

People should be more inquiring. People –you –should want to know everything you can about things that affect you. When it comes to FTD, you probably know more than most of the clinicians you meet. So, when it comes to trying to make sense of what has now become your new “work week”, and the trials that it brings, it is necessary to define exactly what now divides up your time.

If you still work, you may have to find a daycare center for your loved one to attend, or someone to come into your home. If you are able to stay at home, you will need to have a plan as to how you will maintain some kind of order among what will at times be chaos.  A schedule to organize and help your FTD’er to maintain some kind of control for him/herself. Holding on to dignity and a little control will go a long way to helping them to feel respected and valued. Even when they may not be able to talk well any longer, holding on to the last vestiges of something they understand and feel comfortable with will help you too. As the FTD progresses, this will become more and more important to both of you.

You can still have that Friday feeling. You may need to tailor the events of your week a little, but you can make new rituals to share –having special coffee or foods only on Saturday and Sunday, for example. A walk in the park, or going to church as long as your loved one’s behavior will permit. Just find something special that you both enjoy. When it comes to food of course, it is likely that you are going through a phase where your loved one will only eat one kind of food. And that’s ok. Give them their M&M’s or their ice cream, or whatever it is. But make sure that whatever it is they’re having, you’re having your special “Saturday treat”.

Le weekend, as the French say, has long been revered by the working classes as a special occasion. Not having to go to work for two whole days is a treat indeed. But when you care for someone at home, the pleasure of that break is denied you. When you live with someone for whom days of the week no longer has meaning, it takes a special effort to stop the days from running into one another.

To Do  Imagine having nothing to do. Nothing! I’ll bet you can barely remember what that’s like. Before FTD, lazy Sundays reading the papers in bed, strolling aimlessly, calling in at the pub. All seems like a long-forgotten dream now. Your FTD days are full. Your FTD weekends are full too. Try to make them at least a little bit full of something for you. If you can make them full of nothing by having your loved one visit someone else, even better. Spending time alone in my own house is a pleasure that  I longed for many times when in the throes of FTD. Just being alone in my own house. Heaven.

Anyone who has never had that feeling cannot even imagine the yearning to just be in your own space. Alone. It can be draining. The 24-hour vigilance. The 24/7/365 “attendance”. The constantly being on call at every hour of the day and night. We need help. Don’t ever turn it down, even if you’re feeling ok today. Because tomorrow you might be in your yearning mood again. Grab every offer with both hands and run. And don’t look back, at least for a few hours anyway. Your loved one will survive. Even if they’re upset, it won’t last long. They’ll get over it and quickly. And if the person who offered is enlightened by their experience, they may offer again. (Or not!)

Even though you know it won’t last forever, you are only human. You need to time to yourself now. I know from personal experience that there will come a time when you will be by yourself, sometimes more than you would like, even yearning for those chaotic FTD days. It’s a double-edged sword.

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 🙂

Frontotemporal resourcefulness – get crafty!

At first, this post was just going to be an uploaded pdf file [find that here –  FTD Resources] – a list of excellent links  for FTD caregivers.

However, this week, many new FTD people have come into my life. With a multitude of issues going on for them, it seems like an endless supply of problems for which there are scant resources.

Although I have the list of links, websites, books etc. it seems that what people need is a particular, down-to-earth, list of how to stay sane in this maelstrom of FTD. I don’t have an exhaustive list of course. Far be it from me to be the FTD guru. (Although I know someone who probably is).

Guru

I don’t presume to know even a minute amount of all there is to know about FTD. Just my own experience and what I see and hear from other people traveling the same path.

You do have to get “crafty” though. Even though it may go against everything you’ve learned in your relationship thus far. You’re in unchartered territory here as far as behavior and handling it goes. You’ve probably never seen some of the things you’ll be or are seeing. FTD the bully makes people do things.

  • Your loved one may behave in ways you never thought possible.
  • They may say things you never thought you would hear coming out of their mouth
  • You will have to do things you never imagined yourself doing.
  • This includes creative fibbing (otherwise known as lying), pretending something is what is not, and getting crafty about your own behavior.
  • You will have interactions with people that once may have made you embarrassed but now are a matter of survival.
  • Your love will be tested to the limit

The key here is love. Love for the person you knew. Love for yourself. Love for what is right.

Love treeUnfortunately, unrequited love is harder to handle.

TEN IDEAS FOR NOT GOING AROUND THE BEND YOURSELF

  1. It is VITAL, d’you hear me? VITAL that you listen to your own body, your own mind, when they tell you to stop, slow down or walk away. It could literally mean life or death. Sometimes, in an aggressive FTD person, walking away is all you can do. As heartbreaking as it is, you have to mentally walk away a long time before you may physically have to.
  2. Take a break. I mean it. Get a respite grant (www.theaftd.org) and have someone else do the caregiving for a couple of days. I know, you have no-one. No-one else understands. No-one else can do it….There’s a million reasons why you can’t. Find just one reason why you CAN. You have to go on. What’s the worst that can happen? They are angry at you for going away? So what? You won’t be there and once you’re away, they won’t care. There is often a genuine fear of abandonment in FTD, but that can come just when you go out to the car or the store. Since time is often irrelevant, two hours or two days, it won’t make any difference.
  3. Get help.There is something for everyone out there. It may take some time and effort, but it’s there. Get someone to help you. Research – call, write, email whatever. Get everything that is due to you. There are agencies that just do that. Match you up with the right services.
  4. Accept. Accept that nothing will ever be the same. Accept that he/she is going or gone. Once you do that, you can cope more easily. If, like I did, you try and keep things normal long after normal is gone, you will become frustrated and bitter. These two emotions will interfere with your ability to cope. Acceptance is not resignation. Acceptance is the strong response to an unchangeable situation.
  5. Don’t try to rationalize. Your loved one is not the brilliant engineer/artist/doctor/financier that he/she once was. For me that was one of the hardest things to understand. I am not known for my ” glad sufferance of fools” shall we say. Not that my husband was a fool, quite the reverse in fact. Like many people afflicted by FTD, he was intelligent, articulate, and quick witted. But it was very hard for me to talk with the child he became.
  6. Agree. Agree with everything they say. You can always back out or change your mind – even minutes later. They won’t realize what you’re doing (see, crafty!)
  7. Blame someone else. I found that “those people” were very useful in taking the blame for just about everything that happened that my husband didn’t want. The bank, the DMV, the government, the doctor, anyone that was fairly anonymous that my husband didn’t know well. The ambiguous “people” at the bank were idiots because, when he lost his debit card (for the third time) they took ages sending him a new one. In fact, it never arrived. Perhaps because I hadn’t ordered it. After my telling him it was on its way about three times, he forgot all about it. Moved on to the next gripe. Probably how many dirty dishes there were for just two people.
  8. Lower your standards. Yes, I know, you like your house, yard, clothes to look nice. But let’s face it, there’s not much point in having a lovely redecorated house if someone’s going to trash it, poop on it, rearrange it or generally abuse it now is there? Better to spend the time helping them get through the day with the minimum of fuss. The mess may drive you nuts at first, but once you feel the benefit of not having to repeat yourself multiple times daily, you will be less stressed.
  9. Respect. When you have been in a healthy relationship with someone for several or many years, you develop a comfortable pattern. This established security is severely threatened, then demolished by FTD. But is difficult to let go. Difficult in the extreme. How can you stop giving your loved one the reverence they deserve and have had for so long? Well, you can’t of course. But the respect and love now have to be of a different priority. You still have them but they are trumped by the practical needs. The cleaning, the dressing, the prompting, the directing. It’s weird to have to show or tell your partner of many years which leg to put in his pants first.
  10. Independence. One of my top priorities was that my husband maintain as much independence as possible for as long as possible. When it was no longer possible, I pretended he still had it. He believed me. And that was the most important thing. That he never felt like he wasn’t doing things on his own, even when he wasn’t. I never let him believe that he relied on me for anything until he was no longer aware of how much he actually did. The only thing that was an issue for a while was money. He could never get used to the fact that he had no income of his own. It made him feel less than a man. But even when I gave him an allowance every week, he would lose it or hide it, then say I hadn’t given him any. A no-win situation, but it passed.

And that’s the secret really. This too shall pass. Everything passes. Each stage or phase within a stage passes to the next, sometimes with barely a day in between for you to catch your breath. But you must. You must catch your breath. The bastard disease cannot be allowed to claim more than one life at a time. There is so little to combat it, but the one thing you cannot do is allow it to claim you too.

Be crafty. Invent new ways of handling it. Get creative and make your life easier. The hardest part is changing from the life you once knew. But you can do it. You really can. Use all your tools.

Love, honesty, respect, kindness, laughter, and tears.

They all help. Somehow you will get around the obstacles and on to the next challenge. Your solution will be crafted with love and so it can do no wrong.

quilled hearts

 

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

Offended? I don’t really care!

Angry-Red-Smiley-Wagging-Finger-107x107Angry-Red-Smiley-Wagging-Finger-107x107Angry-Red-Smiley-Wagging-Finger-107x107

So apparently, I have made a huge faux-pas and not ‘credited’ someone in my retweets and reblogs. Despite the fact that my reblog clearly stated “reblogged from……” And my retweets clearly showed the source. Because it was a RE-tweet, right?

Well, I’m very sorry. Sorry that you’re offended. Not because of what I did.  Because that’s your problem and not mine. If you have nothing else to do all day but constantly be tweeting and writing articles, I’m very happy for you, In my world, life is not about taking the credit for what you do, but understanding how much someone else benefits from what you do. Your inflated ego is of no interest to me whatsoever. I don’t care about Twitter ‘etiquette’ – give me a break!

I am educated and understanding of the fact that true, evidence-based writing is valid and deserving of referencing. but please, a blog on a niche topic about which you profess to know all (but are not legitimately qualified in) and deign to share your ‘advice’ with the rest of the world is not really of academic stature is it?

Anyway, rant over.

My actual topic is around people being offended.

Offended by your loved one behaving strangely or inappropriately.

Offended by your apparent blase attitude when it happens.

Offended simply by the fact that they are embarrassed for you and by your loved one.

Don’t care. Please don’t care. If your FTD’er isn’t hurting anyone or themself, social embarrassment is the problem of the observer, not you or your spouse/friend/parent.

I experienced many occasions when my husband’s behavior was just not okay. But he wasn’t stealing, or being rude or hurting anyone. He was just being himself. The new him that I loved just as much as the old him. Just doing what comes naturally. Usually, our social norms and mores take over and dictate how we behave. In FTD though, the development of these skills not only diminishes, but disappears altogether. Until we are left with a 3-year old version of the man/woman that we have loved for so long.

Imagine taking a 3-year old to the movies, or the supermarket or a friend’s house. You don’t expect them to behave perfectly the whole time you are out do you? No, you make allowances. And so do other people. But when your 3-year old is disguised as a 55-year old man, the allowances tend to disappear. As if somehow,you can control your 3-year old Boomer and stop the bad behavior.

It’s just ignorance. Lack of awareness of what’s going on out there. The typical societal response. “If it’s not happening to me , then it’s not happening”

You’ll notice I said “societal response”, not human response. Humanity is not the same as Society. We (especially women) are conditioned to never offend others, be respectful, be “nice”. But our very ‘humanness” is what enables us to take care of our loved ones – through thick and thin, “In sickness and in health, til’ death us do part”. Not societal edicts.

The ignorance is astounding, yes. But what is worse is that even when there is knowledge and information, ‘people’ still want to look the other way. It makes them uncomfortable, seeing ‘less-than-perfect’ human beings. Any parent of a handicapped child will tell you that. Anyone in a wheelchair will tell you that. Sometimes I am ashamed to be part of this race we call ‘human’.

Our society is obsessed with perfection. But perfection is conjured up by human frailty and inadequacy. As a defense against it. The fear of being, seeing or experiencing anything less strikes the fear of God into the hearts of many people.

I don’t care. I don’t care that they think my husband, grandchild, friend, parent, whoever is offensive.

I think they are offensive. Offensive to the true human race. Not the fake one. Not the Hollywood/TV/music world one.

The real one.

The one where people actually love other people for who they are. No matter what happens to them. No matter how their disease forces them to behave. No matter what affliction they have been handed.

So, if my love offends you? Guess what?

I don’t care! Tongue

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.

Inner_Peace_by_mcbadshoes

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

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

“DON’T CRY BECAUSE IT’S OVER – SMILE BECAUSE IT HAPPENED”  – DR. SEUSS

 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:

http://www.youtube.com/watch?v=wJ_c2UaccJE

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 (http://greatergood.berkeley.edu/topic/happiness) 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.

HappySky