FTD -Living with Dad

Happy Father’s Day to all those men out there who are dads, granddads, stepfathers, foster dads, and those who step up when dads are absent, including the many mothers who do double duty.

Today, we honor those men who are or have been in our lives to guide, teach, support and love us. For those of us whose father is no longer with us, it is a day filled with memories, hopefully good ones, and love. My fatherly experience was very good. My dad was a hard-working, dignified, decent man who loved his family. He died in 2000 at the age of 68 from the lung cancer that had been growing, despite his smoking cessation fifteen years before. My father-in-law also met the same fate at the age of 44. My husband was 19 when he died and had been looking forward to spending his adult years sharing good times with his dad. My brother-in-law was 11. His dad’s death at such a young age had a significant effect on his life. So, our Dad longevity track record is not very good. My husband loved his boys. Although they were grown men when FTD made its appearance, it still had a devastating effect on them, as it does on all of us.

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My Dad aged 17

“Dad” memories for me are filled with Christmases – all of us in his and Mum’s bed on Christmas morning, him trying on a new gifted hat in his pajamas. With summer vacations, candy and comics on a Friday night (payday). Walking half a mile down the road to meet him from work, just so I could get a ride home on the back of his motorcycle. The “What time d’you call this?” nights. The “yes, I suppose I’ll come and get you” midnight response to my pleading phone calls when I missed the last bus. (I was banking on the fact that by the time he got to me his fury would have subsided, which it always did). The memories of my dad include family Sunday dinners and early morning breakfasts together, just the two of us, then he would take me to meet my ride for work. Happy times. I was shielded from a lot of the ugliness in the world and will always love him and my mother for ensuring that my brother and I had such a happy childhood.

He made some mistakes my dad, which meant that we did not see each other as much as I would have liked when I was older. He married another woman after divorcing my mother to whom he was married for over twenty-five years. I was married and in my own home by that time, but the realization that he wanted something other than “us” was shocking to me. We saw each other of course, but it was difficult for me get over the fact that he had wanted to destroy our family unit and be a part of someone else’s. But he did and I accepted it because it made him happy. It was hard to watch and be part of but I did it.

When your father has FTD, he becomes like mine did – absent. Thankfully my dad did not “disappear” during my formative years, but after I was grown, but it was still hard. Having your dad at home while having FTD is painful. It makes you angry and resentful. Why can’t you be like other dads? Even though my sons were adults, it was so difficult for them to watch, I know. My elder son, Chris, was living in another state at the time, so he lived it vicariously through his brother and I. He would call and talk to his dad, and as time went by the conversations became more and more one-sided. But Alan so loved the calls, even though he could not speak very well. Just the contact made him feel “normal” again I think. My younger son, Adam, lived just around the corner from Alan and I, so he was much more involved in the day-to-day aspects of FTD care. He watched as his dad disappeared slowly into the abyss, feeling helpless. He was very protective of me. We would talk about what was coming next and how we would handle the increasingly bizarre and agitated behaviors. He has told me since that he would dread every text or call from me – anticipating that some dreadful event had taken place. We discussed how cruel it is to watch someone you love go through FTD and that there is no way out until the disease decides it is time.

March 1999 leaving EnglandOur boys had a close relationship with their dad – one of the ties being football. After we moved to the U.S., we would gather at the weekends, sometimes at 4am, to watch our beloved team play as the game was broadcast live from England. Chris is most like him, but Adam and Alan shared the passion for football the most. It broke Adam’s heart when, as the disease progressed, Alan could no longer sit and focus on the game, getting up and leaving the room to attend to laundry or some other imagined matter more important. His responses to the game would be to repeat comments by either Adam or the commentators. He had lost his passion for the game and the very essence of who he was. It was hard for Adam to see and it was hard for me to watch as their relationship faded against their will. FTD unremittingly takes every last drop of passion and volition.

If you are a child, living with a father who has FTD must be strange to say the least. Protecting one’s children is a priority, so those women who are in this position have to do double duty. Trying to ensure that the children have as “normal” an upbringing as possible, and caring for a partner who has no insight into the terribleness that is being wrought upon the ones they love has to be the most difficult thing they will ever do. It’s doubly heartbreaking for them since they know that their children’s father will never see the dance recitals, track meets, swim meets, weddings and grandchildren that are to come. FTD knows no bounds. Fathers become children before their children become fathers. The slow regression must be, for the children, like welcoming a new baby into the family. But how hard is that explain to your friends? How strange to have to explain your dad’s behavior to your friends. How uncomfortable for you to have your friends over and have your dad act all weird. Some kids of course, take it all in their stride, at least on the surface. They accept and accommodate with the resilience that we know kids have. But the resentment, for which they feel guilty of course, is bound to come. Other kids have parents who divorce, or have cancer, or die in an accident. But these kids of FTD have to live with changing behaviors every day, with no end in sight for several years. They may have to move, change schools, give up things due to financial constraints and lose some of their family or friends because they just don’t understand and fade away. Their dad is around, but unable to go to graduation. Present but unable to contribute at the PTA meetings. At home, but needs a babysitter. Alive, but no longer with us.

So, this Father’s Day, I wish all dads a lovely day. But I send the FTD kids a special wish that somehow, their life will be enriched by the experience of being forced to care. That they will one day understand how important they were in their dad’s life. And that they will be able to celebrate future Father’s Days with fond memories from better times.

Daddy and me

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 – Bringing New Horizons

Lounging lady

Since becoming a lady of leisure recently (hah!) I have been tackling some projects around my house. Just small things that I didn’t have time to finish (or the inclination when working 50 hours a week) following the big renovation last year.

One of the things I noticed while painting, sanding and stenciling, was that if I made a small mistake, or got paint somewhere it shouldn’t be (mostly on me), it didn’t matter. Doing a half-assed job really didn’t matter. As long as it looks mainly ok, that’s alright. That’s something new for me. It began while caring for my husband at home. Standards of housework, appearance and status became a poor second to ensuring that my darling hubs had what he needed and was safe and comfortable,

Treading the FTD path brings out things in you that you didn’t know were there, but more importantly it puts things into perspective. When I lost my job, I went through a myriad of emotions, mostly because that place had been one of my sources of support through the FTD years and now it’s no longer available to me. I am banished. But what was eventually revealed to me over the last few weeks is that the job is not who I am, it’s what I did. That’s a little contradictory to what I have preached throughout my nursing career. I used to always say that nursing is not what you do, it’s who you are. The ability to empathize, bear the pain of others and make compassion a daily practice comes from inside. It is who you grew into as an adult, not what you were taught in school. So, although I am a nurse at heart and I have those necessary qualities, the place I demonstrate them is not really important. When the banishment happened, I told everyone – “Don’t worry, I’ll be fine, it’s not the worst thing that’s ever happened to me”.

And that is true – it’s not. FTD trampling over my love and my life was definitely the worst thing that ever happened, and I survived that. I am still here to tell the tale and hopefully, help others to weather the storm that FTD throws at us.

Learning to adapt and compromise is one of the basic tenets of handling FTD. I wrote about acceptance and resilience here, discussing how important you are in this whole equation. This thing has invaded your life and, despite its best attempts, you are more than capable of pushing back. Lately, I have become more involved in local attempts to influence legislation around dementia support. It’s a huge task and it will take many people and longer than any of us would like to influence progress. But I have the luxury now of fighting for others. I can fight FTD on a different front. You are in the trenches, fighting hard to maintain some kind of quality of life for you and your family. That’s hard. Harder than anything you will ever do. That’s why I think I can now afford to be half-assed about stuff. Because my priorities have changed. I know that the stencil on my laundry room floor is not as important as finding my husband a safe place to live when I couldn’t take care of him anymore. I know that if the paint dripped on my patio pavers is cleaned up less-than-perfectly, my life will not fall apart. I know that as lucrative and comfortable my high-flying job was, it was not the definition of me. 

Now, I am more likely to have a pet-friendly sofa, a grandchild-demolished bathroom and days without make up or showers. But it’s because I am calling the shots, not FTD.

My new work involves advocating for others and helping them to navigate the complexities of our funky healthcare system. Not that I know everything about those things of course, but I hope to bring some relief to people struggling to find their way through the FTD  maze. I hope that, in time, such advocacy for those of us who are otherwise occupied with FTD and its dubious charms, becomes mainstream and not just for those who can afford it. It is my hope that the healthcare system will wake up to the dementia tsunami that is upon us, sooner rather than later, but like most things in government, the wheels “grind exceeding slow” to quote our old friend Euripides, who was actually speaking of the ways the gods work, but you get my drift. In the meantime, I will do my best to advocate, navigate and support those I can to weather the storm and come out the other side as I did. If one person’s journey is a little easier for a little time, then I will consider myself successful. And I won’t do a half-assed job of that, believe me.

map and compass

 

FTD -Ever Decreasing Circles

As one who has passed through the weird “Looking Glass” of FTD and back again, I now have a different perspective on the day-to-day oxymoron of “frantic meanderings” through tantrums, crises, tears, laughter and frustration that comprises those days.
Looking Glass gif

As your life turns in ever-decreasing circles towards the inevitable end point, you become completely caught up in all aspects of the caregiver life that has been thrust upon you. Your world becomes smaller, more focused upon the minutiae of feeding, cleaning and keeping your loved one safe. Everything gets smaller – your circle of friends, your sphere of social activity and even your one-to-one interactions with your spouse, parent, child or partner. In fact, your entire world becomes one specifically centered around ensuring that everyone is safe and as comfortable as possible. This is almost im-possible when it comes to FTD. The degeneration of the brain can be imperceptible on a daily basis, then all of a sudden, they can’t do something that they could do yesterday. Or won’t eat something that was the only thing they would eat yesterday. But sometimes, there are things that persist all throughout the course of the disease process without fail.

Lately, I have been hearing a lot about “pacing”. This was something my husband did all the time, even up to about a week before he died. He was weak and frail and did not eat or drink for the last eight days of his life, but by God, he could still pace. Eventually, he was so weak that he spent more time in bed than he did pacing. Not for lack of trying though. He would still struggle and try to get up even when he physically was no longer able. He struggled right up until the last two days of his life and even then, sedated and pain-free, he moved his legs in the bed as if he was running, running for his life, which he was. Pacing was the one thing that relieved the anxiety that persisted throughout the latter half of his FTD ride. He was not an easily “soothable” man, but the physical exertion was the only way he could relieve the pent-up energy that was still generated in a young(ish), fit man.

Pacing, if overruled by medication in the form of anti-psychotics or anti-anxiolytics like Ativan,  can often lead to uncontrolled screaming and agitation because the anxiety that persists has to come out somewhere. Pacing is not the cause of anxiety, but a symptom of it. Yes, medication can help, but in addition, a less stressful course of management can be bouts of physical activity balanced with periods of rest. This will enable your FTD’er to use up that energy and sleep during the day, hopefully encouraging a more restful sleep at night – especially for you. I hear constantly about the exhausted caregiver who cannot sleep at night because their FTD’er is up and around, rummaging in drawers, or kitchen cabinets, or just pacing. It’s difficult to prevent this behavior but there are some things you can do to alleviate your frustration with it.

Frustration

  • Mental and physical activity is vital. Not to the point of exhaustion, but to let out energy.
  • Remember that “stimulation” is not what you are aiming for – that can cause more frustration – but rather a use of the faculties that are still remaining can bring a degree of satisfaction, especially in those still high-functioning FTD’ers.
  • Don’t rule out anything that you feel may be an insult to their dignity. I was the biggest proponent of maintaining as much independence as possible for this very reason. But remember, that as the disease progresses, so does the mental development age. So, those distractions that would amuse an 8, 5, or even 3-year old may suffice for a short time. Jigsaw puzzles, age-appropriate children’s books, coloring (be careful they don’t eat the crayons!), or a simple ball game.
  • Think about how “dignity” looks in a 3-year old. They are much less inhibited and conscious of social norms and it is likely that your FTD’er will be too. Often it is your own embarrassment or humiliation that prevents you from offering activities that you may consider “childish” or inappropriate for a man or woman of 40+.

One person I know keeps her husband so busy, he doesn’t have time to “get into mischief” so much. Long walks, jumping in puddles, hot tub baths, large toys, craft activities, she is very imaginative. I know, I know, being this creative can be exhausting for you, but you will reap the rewards in a different way if your loved one sometimes rests in the afternoon and sleeps at night.

Powerwalk

 

If they are a pacer, let them pace. My mantra was always “If it doesn’t harm him or anyone else, it’s ok”. Walking with a purpose or end goal is not the point here. Just the act of walking can be enough to soothe a troubled soul. Everyone is different. Some high-functioning people are able to go shopping, visit the park, spend time in social situations for a long time into their illness. But, eventually, these skills will diminish too and you will have to think of new ways to occupy those long days, especially if they are physically fit and healthy.

It’s important to remember that what you consider to be boring or mundane, may seem like the most important thing in the world to someone with FTD. The obsessive- compulsions, or repetitive behaviors like tapping or humming, may drive you crazy, but they are self-soothing mechanisms by which the person with FTD is trying desperately to hold on to some sense of control. As difficult as it is to ignore, your own sense of frustration will lessen if you can switch off from anything that is not destructive or harmful. It’s a little like when you have kids, you have to change your priorities and what you would like to be done and perhaps lower your standards of how tidy your house needs to be.

Rest for all is equally important. Not necessarily sleeping, but sitting quietly and doing nothing. My husband would only do this if I was sitting next to him, which was frustrating since I could think of a million things I could be doing once he was sitting down. But, the minute I moved, he would become restless again. The only way he would sit calmly was if I would sit calmly too. Looking back, that was not necessarily a bad thing. Those little enforced breaks meant that I had moments to treasure later. Moments when it was just the two of us and I could pretend that FTD was not holding us hostage. Although it did mean that laundry and housework didn’t get done. Oh well.

In residential care, Alan became an expert pacer, forcing his caregivers to follow him down the long hallways, complete a circuit of the pool table and then trot back down towards his room at the end of the hall, to begin the process all over again. I was amazed at their patience and tenacity, along with the fact that they never questioned it, or tried to stop him until they could see he was becoming exhausted; at which point they would try to distract him with food or something, in an effort to get him to rest. Sometimes they were successful, sometimes he would almost fall asleep while walking, at which point they would skillfully guide him back to bed for a nap. He paced when I was there too, and I would follow him and guide him around obstacles, which at that point, he could no longer maneuver. Thankfully, he never fell, which is a miracle in itself. As boring as it was to walk those halls, he would hold my hand and walk ahead as if showing me around the place. We would stop and talk to the staff, sometimes he would try and go into other people’s rooms, but was easily redirected. As weird as it may sound, we made some fond memories under horrible circumstances and I am grateful to the staff there for making the last weeks of Alan’s life as pleasant and comfortable as it could be. It was a time of great reflection for me, living alone for the first time and working without worrying about what he was up to at home. Although I became exhausted in a different way – emotionally – having the time to reflect on what our life together had become and what the future would be for me.

So – pace yourself! The ever-decreasing circles of your life will take stamina and determination. Those days when you are utterly exhausted and tired of being the nice guy will make you weary. Do whatever it takes to make it less so. I slept in a different room for the last two years my husband was at home. It’s amazing how a good night’s sleep can improve your outlook. I used to hear him sometimes, shuffling around, opening and closing drawers, rearranging his closet until late at night. Once I knew he could not get out of the house or into my room, I could rest easy and let him do his thing. Eventually he would fall asleep after wearing himself out – sometimes sleeping on the floor in his room. The upside of this was that he slept in in the morning, leaving me the time I needed to get ready for work, before I woke him to get ready to go to adult day care. If it’s possible to have someone come and be at your home overnight and be prepared to attend to your FTD’er while you sleep, you should definitely take them up on it.

Throughout this exhausting process, be sure to do a few things to take care of you. If you have someone who can sit in your house for a few hours, go out and do something you like. Guilt is not an option. (There’s a whole other blog post on that!). You need to recharge your own batteries. Believe me, I know what it is to drive yourself into the ground caring for someone else. As the old saying goes, “If I knew then what I know now………”. You get my drift anyway.

There comes a point where you have to make ever-increasing circles without them, even before they are gone, but especially in preparation for after. I think about all of you out there every day, believe me. I know it’s the hardest thing you’ve ever done or probably will do. My heart hurts for the things you are going through. I feel a personal connection with all of you, even though we have never met.

Love drop

FTD – Mission Impossible!

“It always seems impossible until it’s done.” – Nelson Mandela

Work – it means something different to everyone. What is it anyway? I have written about it here before, about what it means to someone with FTD. It represents having control over one’s life, contributing to life, liberty and the pursuit of happiness. As much as we all say “Oh God, it’s Monday already?”, work gives context to our lives, it gives us purpose and drive. If you’re lucky enough to love what you do, then it isn’t “work” in the true sense of the word.If you have a calling, a vocation, then your work is the very meaning of your life.

Three weeks ago, I went into my job of more than ten years as usual. It was the place where I had received a huge amount of support during our FTD years. The place where I felt safe from the ravages of the bastard disease, if only for a few hours. Work was my savior on those days when my world was closing in and FTD commanded my every waking moment. In a responsible, high-level position, I had to focus on other people and their needs, instead of mine and those of my husband. It gave me a wonderful sense of pride and humanity to be in a place where only those closest to me knew what was happening in our lives and those I served had no clue.

Three weeks ago, I went there as usual, bright and early. Two hours later, I was in my car on my way home from that place for the last time. Ten and a half years finished and over. My supporters and antagonists left behind to move in the “different direction” that, it had been decided, did not include me or my position. It’s ok. I tell you this not to glean sympathy or pity. I tell you this because I am happy that I am healthy enough, mentally and physically to understand what freedom this new turn of events will offer.

donald trump

It has given me fresh perspective. I don’t think that the decision was intended to please me, or make me happy, but it actually did and does. Now I have the time and energy to devote to –well, whatever I damn well please. Now, I have the benefit of knowing that I have spent the last ten years working towards this moment. Five of those ten years have been spent in grief and loss. But those people, that place, gave me the strength to get through whatever FTD had to throw at me. My work sanctuary sufficed to give me the stability I needed to survive the last five years and I did.

Actually, I did more than survive. Because, despite the best efforts of the bastard disease, I not only survived, I thrived. I thrived because I had the support, the love and the salvation that I needed to get through it all. All those things that you are going through are survivable. I’m pretty sure you don’t think so, I never did. Actually, I never even really thought of it in that way, I simply got through the day-to-day, just like you do. But now, on the other side, I can see that everything I had in place – my family, my friends, my work, were all just crutches that were available to help me. I know that some of you feel that you have little or no support., your families, or those of your loved one having abandoned you in some way, or they just don’t get it. But, even though you may feel alone, be patient, because someone, somewhere will be coming along I am sure. Not in the romantic sense, but a person or persons who will be a support and comfort to you.

Along my journey, not long after Alan died, I met a woman, a minister no less, who had also lost her husband to FTD. The chances of this happening are pretty random, but meet we did and share we did. She was just in my life for a very brief time before our paths parted, but I believe she came into my life for a reason and I am very grateful for that. She was part of my “life in progress” situation.

The FTD path is never easy, and I mean , never. You all have a different story to mine and to everyone else who is caring from someone with FTD. Some of you work outside the home in addition to caring for your FTD’er and that is challenging indeed. At the various stages, some of which only last for a few days, you come up with ways that will ease your path and get through this particular stage.

For example, when my husband’s sense of time was slipping, I would leave for work before he was awake,  prepare his breakfast, leave a note out on the counter to tell him his lunch was in the fridge and put a note on his sandwich in the fridge saying “Lunch”. Phew!  One time my son went over to check on him at 10 am and he had already eaten his lunch. Hm. So my devious plan didn’t work then.

So with FTD, your new mission, should you choose to accept it, is to invent and reinvent new ways in which to keep your FTD’er alive and well. Every single day. If you’re lucky, you may get through a few weeks, or even months, without a significant change. But change will come, as sure as the sun rises in the morning. It will keep you on your toes that’s for sure. Reinvention of yourself and your routines and schedules is the only way to cope.

  • A sense of humor will keep you sane. Laugh at the ridiculousness of it all. Cry at the futility of everything, then laugh again in the face of FTD and give it the bird.
  • No matter how ridiculous a solution seems, give it a try. You never know. Chocolate ice cream for breakfast? If it gets you out the door to work and them to day care, what the hell? Puddle jumping in wellington boots? Sure. Reruns of “Two and a Half Men” on a loop? Heck yes, if it gives you 10 minutes of uninterrupted time to do something you want to do. Fake ID/credit card? Thank you. When it doesn’t work?- “Oh those things are hopeless, I’ll call the bank/DMV tomorrow and complain”. Kid’s toy paper money? Oh yes.
  • Flexibility with work schedule is a godsend if you can do it. I used to go in at 4am so I could be home at noon. Since my husband rarely rose before 8am, it worked. I realize that’s not for everyone, but it doesn’t hurt to ask.
  • “Therapeutic fiblets” are invaluable. “The car is in the shop”, “I will call _______ tomorrow”, “That door lock is broken”, “The store is closed” etc etc.

As you can see and you know, being an FTD caregiver is in itself a full time job. Being inventive and creative about your life is a necessary part of it. Don’t be too hard on yourself is probably the single most important thing. No-one ever died from not getting a shower today, or eating vanilla ice cream for three meals a day, even with diabetes. Co-morbidities, or other illnesses that your loved one may have in conjunction with their FTD, become insignificant once you’re faced with the inevitability of FTD. Keeping them healthy is a poor second to keeping them safe.

One of the hardest things sometimes is to do what everyone urges you to do – “cherish every moment”. Good advice indeed, but sometimes that takes work too. Sometimes all you want to do is lie down and sleep, even if it means missing a momentary spark of lucidity. There comes a time when you have to give in to your own emotions and exhaustion and give yourself some succor. Being an inventor is exhausting. You come up with a million ideas, but only one of them works. It’s worse than being on Shark Tank. Your efforts will be dissected and rejected. Your FTD’er will give you that glazed-eye look and your plan will bite the dust. Oh well, on to the next thing.

The constant need for change is defeating too. You are trying to keep all the balls in the air – work, home, children, school, aging parents, and that annoying ticking noise in your car. And then come up with a solution for how to hide that bag of Doritos in a place where it cannot be found – again. If you are like me, your job is a haven of non-FTD related stuff. The people there are demanding in a different way and, for some reason, don’t seem to be nearly as much trouble as the one you have at home. The separation is bliss. Of course, many FTD caregivers don’t have the luxury of going out of the house alone every day. For them, life is a constant loop of invention and distraction, cleaning and hiding. You people are warriors of a different nature. Hardened to the sights, smells and sounds of your love slowly drifting away. I for one feel that I got off lucky in some respects. Going out to work saved me from my own insanity. I salute you for being there 24/7 and giving your all. Caring for someone with FTD is definitely not for wimps and Mission Impossible is handled every day.

This message will self-destruct in one minute. Make sure that you don’t.

 

FTD – Friends, Truth and Disconnection.

friends

One of the hardest things for the caregiver of a person with FTD has to handle is the withdrawal of friends and family from the day-to-day happenings in your world.

“My best friend who does call me or I call him several times a day is the only one and he doesn’t want to come here cause he doesn’t like seeing Peg the way she is. So hurts sometimes”.

– James, caring for his wife.

It’s not enough that you are living in an environment of silence, anger, pain and downright belligerence at times, but you also have to suffer the “slings and arrows of outrageous fortune” . To “take arms against a sea of troubles” is more than you can bear to do. Putting this into perspective (and in non-Shakespearean language to which we can all relate!) – you don’t have the energy or the time to persuade, cajole or help other people to come and see someone they have previously professed to love and respect.

What’s more is that, not only do friends sometimes abandon your loved one, they abandon you too. It’s sad and painful.

“I don’t blame those that distance themselves. Not sure how I would handle it if the roles were reversed. This disease makes people very uncomfortable”.

– Roger, caring for his wife.

You will get through the most harrowing experience of your life with or without them. And there will come a time, much later, when it will no longer be important. They have their own stuff going on. Their own problems, their own domestic issues. Their own fears and failures. I don’t think that makes it alright that they abandoned you in your time of need, but bitterness is a useless emotion. Revenge is not sweet.

Shield maiden

You will attain a plateau of indifference. Not that you don’t love them as friends anymore, but afterwards, the shield that you built to protect yourself from the “slings and arrows” of FTD will also protect you against the absence of something that was not as robust as you may have thought anyway.

“I think if we can help people overcome their fears, let them know it’s okay to feel awkward, say something stupid, stutter or act like an idiot, at least it’s interaction, and maybe the next time won’t be quite so awkward. Of course everything makes more sense in hindsight, and it’s nearly impossible to change other people. So even though I’m pretty sure I know why they do it, I’m not sure the change will ever happen if we leave them to their own devices.

– Rip, caregiver to a loved one with FTD

Rip is right, you have to let them know it’s ok. Whatever level of support they can offer. If that’s an occasional phone call, then let that be ok. If that’s dropping you from a circle of friends completely, then let that be ok too. You’re in control only of you. The most oft-used saying in the FTD world is:

“It is what it is”

That is never more true than in every FTD day. And so, the friendless situation is the same. You’re not friendless. It just feels that way sometimes. What it is is different. Different people that you have come to know, those who get it. The ones who are going through the same things as you. Not exactly the same, but relatable experiences. Different daily routines, different perspective. Those things that you always took for granted are different now. Like friends and conversation. It’s like starting a new job. everyone seems strange at first, but familiarity ensues and you make friends with people that you never would have found if it wasn’t for FTD.

It has to be said that friends can also be your rocks, your place of retreat. Those that stick around and hold your hand – physically or metaphorically, can do it from next door or thousands of miles away. They will take your call or tears at any time. One lesson I learned from my experience with FTD was that the people who were around just took to the situation without any request or discussion. They just did it. They behaved no differently towards my husband, treated him with respect and love just as they always had. They still do, even now he’s gone. He had less-than-perfect behaviors even before the FTD and they knew that. We all did. We all do. There’s the rub. We all do. None of us have perfect characteristics or behaviors, with or without FTD. Some people are just “not comfortable” with those things that lie outside social norms.

If I’m honest, maybe I was not either before my run-in with the bastard disease. Maybe I was less than tolerant of the frailties of others. Even without the presence of a terminal, devastating illness, my own behavior could have been better. It probably still could at times. I am laughing right now as I write. Since the FTD circus left town and I said my last goodbye, I have become much more introspective. FTD took almost everything from me, but in fairness, it gave me some things too. I learned more patience, tolerance and how much love I had inside me. I also learned how to not think less of people who are not like me. A hard lesson and a humbling one.

Now, I view friendships and relationships much differently. Or even indifferently. Not for what they bring to me, but for what bring to them. I am working on taking things a lot less personally and trying to see things from a more objective point. Although, in contradiction to this, my own defiance and defensiveness were the very things that helped me fight for what was right for my husband, so they did come in handy there. I had a very strong shield. The shield was reinforced by the love and support I received from the people who did stick around.

So, to quote the song “You gotta have friends”. You really do. They just might not be the ones you expect.  Lending a hand comes in many forms.

friend hand

 

 

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

FTD – R and D? Finally! Happy New Year Arnold!

So here we are. 2015. Happy New Year! I hope that FTD is kinder to you this year. It seems like we are finally seeing a little money being made available for research into defeating the invader into our lives – FTD. Check out this link to further details:

http://www.healthline.com/health-news/nih-grants-30-million-to-study-frontotemporal-dementia-011015#1

Arnold Pick2As you may know, Arnold Pick is arguably the most famous person to describe a premature kind of dementia that we now know as FTD. He called it Dementia praecox” In 1891, Dr. Pick described rapid cognitive disintegration, often beginning in the late teens or early adulthood.  Nowadays, frontotemporal degeneration refers to a group of conditions. But at the end of the nineteenth century, work was just beginning on discovering more about this group of disorders, which originally were thought to be psychiatric in nature.

There had been many other physicians, neurologists and psychiatrists all the way back to 50 B.C.E, when a man called Lucretius used the term  “dementia” to describe “being out of one’s mind”.

LucretiusSo, after two thousand and sixty-five years, it’s probably about time for some some money to be put into research, since so much is still unknown about this demon that we battle every day. We hear about Alzheimer’s Disease ad nauseum. I truly understand that caring for anyone with any kind of cognitive disorder is draining,  deflating, soul-destroying. Believe me I know. But the powers that be really need to wake up to the fact that the vast majority of people who develop Alzheimer’s Disease are elderly and require a completely different kind of care to those amongst us who have three children under the age of ten, or teenagers who are grappling with the fact that their parent is not their parent anymore.

Awareness is paramount to the cause of those young men and women who are the partners, wives, brothers and sisters of those afflicted by the bastard disease. Those people who have had their lives snatched away, chewed up and spit out so that their loved one is now an infantile version of their former self. Those beloved ones who are thirty-some, forty-some and fifty-some years old and who will never again understand their role in life. It’s not as rare as one might think or be led to believe by the article above.

Lucretius knew. Arnold knew. They just didn’t really know what they knew then. I would love for them to be spirited to the here and now and see how epidemic their discoveries have become. Of how millions of lives are affected. I wonder what they would think of the vast array of technologies and advances available to us now and despite our knowing much more than they did then, we still don’t know enough to make it go away. Maybe we would know more if we dedicated more time and resources. If we threw everything we had at the bastard disease. If politicians were less concerned about where their next “business’ trip is coming from (or going to). If big pharma were less focused on making money selling their wares and more focused on finding cures. If governments (and not just ours) were dedicated as if it were their own spouse that needed the help.

The zeitgeist needs to change. If you have loved or even just met someone for whom FTD is a reality, you know that social perception and awareness is light years behind the reality.

FTD is occurring globally on an ever-increasing scale. Social media groups are popping up all over the place, with more and more new members seeking support from one another. There are scant resources to help them. They only have each other. The lack of knowledge, the guilt, the resentment, the love. It’s all there. People don’t know which way to turn. There are people who gladly share their knowledge or experience, but sometimes it all seems so futile, Is this what it was like for those people who experienced those things of which we are now so accepting but were the FTD of their day? HIV/AIDS?  Unwed mothers? Homosexuality? I realize that those things also carried (carry?) social stigmas, but FTD can do that too.

Friends, or those we once thought were friends, shy away, not calling or coming to visit. Making excuses not to go out together. It all comes down to fear. Fear of the unknown, of the “I don’t know what to say”. Of feeling embarrassed.

Sometimes I wish someone famous would develop FTD. Then maybe people would sit up and listen. Not that I would actually wish the bastard disease on my worst enemy of course, but anything that would bring a huge public eye-opening about what is happening would be a major breakthrough.

We’ve all heard of Arnold Pick, but most people have not. If he were here now, more glamorous and in a position of power, people would really sit up and listen, right? Right, dream on. I guess there are too many people and groups with vested interests in too many other things.

I always think it’s sad that money dictates how much attention, time and resources are dedicated to one thing or another. If we are humanists, shouldn’t we be doing these things for the greater good? Of course, the researchers all have families to feed too, so I can’t begrudge them that. Just don’t want to line any fat cats already-bulging pockets. Anyway, not to be ungrateful, I think it’s wonderful that $30 million is dedicated to our cause.

To end on a lighter note,  here’s a little dementia humor…….

Return to Rita

 

 

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

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.