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

Return to the scene of the FTD crime!

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

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

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

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

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

Well, I have decided go back.

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

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

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

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

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

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

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

HeartHome

Thanks to FTD – (un)Happy Birthday! Cheers! (with just a little dash of sarcasm)

eeyore birthday

Birthdays don’t have the same meaning once FTD takes a hold. For you or your loved one. Somehow the apathy, lack of insight and total indifference to anything once joyous overwhelm all concerned. Despite best efforts, it is difficult to enjoy those high days and holidays (more to come on that topic in the next couple of weeks).

Anyway, tomorrow is my birthday. My birthday three years ago was a significant turning point in our lives. Not least my husband’s. It was the last day he spent at our home. At three o’clock that afternoon, after waiting around the house all day making phone calls, faxing papers and hiding my anguish, I took him to an inpatient psychiatric unit where I left him, never to return.

So, as hard as I might try, it is difficult for me to “celebrate” the day of my birth anymore. The day comes tinged with sadness and a sense of disbelief that it was three years ago. A feeling of shock that I actually went through with it and took him. Despair (still), that I had to do it for the sake of all our safety, not least his. You may come to (or already have) a similar point in your FTD journey.

It is such a personal, individual moment, just like a birthday really. It belongs to you and you alone. Your feelings as you take those steps to changing your lives forever will be unique to you. Painful, baffling, fearsome, but unique. For me, that turning point shaped the next three years and still does to a certain extent.  If you have been together for a long time, as many of us have, or your FTD’er is your parent, making the decision to move them out of your home is devastating. Then, once the decision is made, you have to actually do it. That’s the kicker. Physically taking them and knowing they are not coming back. They are blissfully unaware of course. Well, if you have played your cards right and not told them. Please don’t tell them. Don’t discuss it with them. Don’t ask them. They are no longer your partner in these kind of decisions. You have become a parental figure and must make these agonizing choices for them now.

They won’t like it of course. Anything that changes their routine, their comfort zone, will not be popular.  That’s why you are not going to run it by them for approval. It’s like choosing your child’s elementary school. You don’t really consider their preferences when they are five after all. It’s the same for your FTD’er. Not capable of making informed decisions or good choices.

You may find it hard to find a “good” place. Of course “good” is an entirely subjective term. A psychiatric inpatient unit is only a temporary measure. After that you will need to find a more permanent residence.  One of the most difficult things is not having the person who previously shared these decisions with you at your side. Hopefully, you have a family member or good friend who will help you. Someone who can remain objective and is not swayed by the emotion of actually doing what you’re doing. Rushing around town to look at suggested places is, at the very least, stressful.

You don’t really know what you’re looking for or at. mazeYou don’t really want to do it, so you still hang on to the faintest hope that even now, there may be, just may be, the possibility that it will all be ok and you can take them home after all. Depending on where you live and how much financially you have to contribute, there are other stressors too. Finding $6-8,000 a month is no mean feat. And believe me, not everyone has your best interests at heart. Don’t assume that because they claim to be healthcare facilities that they actually care about you or your FTD’er. It’s big business, residential care.  Choose carefully and don’t give in or give up. Don’t believe everything you are told and don’t settle. Make it very clear from the outset that you know what’s what (even if you don’t, you will find out). Speak authoritatively and make it clear that you are the one in charge of your FTD’er’s care and they are merely working for you. Which they are. And for $6-8,000 a month, they’d damn well better be good.

So, now you’ve actually got them to their new digs – now what? What does that mean for you? Thanksgiving 2011 was a quiet affair in our household. We spent the day at home, each of us internalizing what had happened and thinking about how things were going down at the psych unit. I called of course, but my husband was still raging and unable to understand what was happening. He was quite dangerous at that point, throwing furniture and trying to escape at every opportunity. After a few days of medications, we were able to visit and talk to him on the phone. But he never understood that he would never come home again. So, for the person with FTD, the transition from home to residential care means change, uncertainty, fear and insecurity. All the same things it means to you. Your life has taken on new meaning. New horizons.  A different life.  Regardless of your relationship before, moving your FTD’er into care is unsettling for everyone. But it has to be done sometimes for safety, for peace of mind.

So, my birthday brings mixed emotions. My husband’s birthday is ten days after mine. This year he would have turned sixty. The fact that many of our friends are celebrating this milestone too over this past year and into next brings feeling of envy and sadness. The parties, the cruises, the trips and other celebrations all serve to remind me that we will never experience those things together again. I am happy for them of course and don’t begrudge them any of it.  I just miss my darling at this time of the year more than any other. From October to January, we had our anniversary, both our birthdays, and his favorite time of year – Christmas and New Year. So, I approach this upcoming holiday season with more than a little heaviness in my heart. It’s my favorite time of the year too, at least it used to be. I still like it but it no longer holds the same excitement.

So, Happy Birthday to both of us. I’m sure that wherever he is, he is raising a glass of something in a toast.

love champagne

FTD – No Need To Explain!

I could really write this post in three words –

STOP.  EXPLAINING.  YOURSELF.

But let me elaborate.

By the time your loved one reaches the middle stages of FTD, they are, generally speaking, often beyond comprehension of most of what you are saying. That’s not to say they don’t understand the individual words.But their understanding of what they mean all joined together and in context is very skewed.

Blackadder-Confused-Look

Their grasp on the social niceties for example, is almost non-existent. So asking them to speak quietly, or stop staring will fall on deaf ears most of the time. You see, it’s not that they don’t know what you said, it’s just that they don’t understand why it’s important. They think that they have as much control over their behavior as they always did. And therein lies the problem. They have the ability to make you think that too.

As I have discussed before, we tend to give our loved ones the respect and consideration that we have for the last twenty, thirty or forty years.  It’s a natural thing to do. It’s the same if the FTD’er is your parent. Any relationship based on love and respect falls back on these things during times of stress. You have an invisible understanding that you just don’t do or say certain things. FTD takes that away.  The FTD brain has so many holes caused by the degeneration that appropriate and seemly behavior become a thing of the past. But not to them. Not to your loved one. They behave just as their FTD Taskmaster tells them to. It’s like having that little devil sitting on your shoulder. “Go on, do it!”. But now there is no angel on the other shoulder – their conscience, telling them not to. Everything is fair game. Even to the point of hurting, physically, mentally, emotionally. grotesqueringmaster

The bastard disease is the Ringmaster in the circus that has become your life.

So, if you accept that your FTD’er is no longer capable of deciding what’s best, you must come to the conclusion that you know what is. Yes, I know it’s not the position you want to be in. Deciding someone’s fate is overwhelming. But one of you has to make decisions and that someone has to be you. Here’s the thing. Once you accept that, you must also accept that your decision is final. No do-overs, no “well maybe’s”, no “we’ll see”. You can say those to your children. Your children can tell when you are undecided. But when it comes to decisions for you and your loved one’s safety, you cannot compromise and dither. The ultimate end to this is that you must not stop to explain. Explaining leaves room for choices. You know that your loved one can’t choose. They think they can, but when they do, it’s often a poor choice. Why else do we have advance directives? Because at the time the person makes those decisions, they are have a clear mind and are making rational decisions.

Explanations leave you vulnerable to “No” .

Explanations offer a chance for the person with FTD to make a poor choice.

Explanations answer the “What?” with “Because” and the because will probably be unacceptable.

Because they don’t understand the “Why” or the “How”.

Because FTD has addled their brain and their thoughts can’t get through the tangled mess.

You explain because it makes sense to you.

Because you have done it for years. Because it’s respectful to give the “Why”.

Because you love them.

Yes No

Explanation can cause more confusion and provide fuel for outbursts of defiance. You’re explaining because it makes sense to you. I have said many times before – “Don’t ask -tell” and this tags on to explanation. Don’t ask a question, don’t give an explanation other than “we are going in the car”, or “Sit down. Put on your shoes”. Anything more complicated will illicit either a blank stare or “No”. If they do ask “Why?”, keep it simple. Say “We have to go somewhere”, or “We are going out”. Try to keep these conversations short, keep them busy but don’t hurry them or they will get flustered. Let them put their shoes on/take a shower/walk to the car at their own speed. Your frustration will rub off believe me. Just make sure you allow enough time for slow movement and bite your tongue.

Explaining comes naturally to us. We are accustomed to people needing to know why we want them to do something or what we are talking about. Your loved one with FTD no longer has the capacity to rationalize these things. For them, it’s about the here and now. You may have heard the term “WIFM?” – “What’s In it For Me?”. This is the perfect acronym for your FTD’er. They are not being selfish. Their sense of self is diminishing fast. Selfishness relies on a purposeful action that will benefit only one. FTD brings out instincts in a person that are usually controlled by social mores and respect for others. Filters and inhibitions are eventually so eroded in the FTD brain that thinking of anything other than mere existence is impossible. There comes a point when even that is gone and risky behaviors result. The concern for self-preservation deserts your loved one and it will be up to you to protect them. It’s a jaw-droppingly scary position to hold – Protector of the Vulnerable. But you can do it. You will make all the right decisions. Trust your love and your instinct.

Just don’t explain why.

There is another aspect to the explanations also. In a perfect world, your family would respect and understand why you do the things you do. Sadly, people in your family may not appreciate your now-seemingly bombastic approach to caring for your loved one. If they are not around FTD much, your behavior may seem akin to that of Attila the Hun. Their denial may lead them to the conclusion that you’re a know-it-all control freak, with Hitler-like tendencies. I have to say here that my own experience was not like this at all. My family and friends were nothing but supportive and helpful and for that I am eternally grateful.

Well, to hell with those people if they refuse to accept your explanation, demonstration, literature and.or pleading. They are human yes, but they should respect your decisions. They are not entitled to an opinion unless they are there 24/7, see what goes on in an FTD house and contribute to the s**tstorm that your day can be.This goes for those curious people at the grocery store too. I hear time and again about families who just flatly refuse to accept that it’s as bad as it is. But they don’t ever want to come over to your house and experience it either. I know of many people whose already effed-up lives are further disrupted by constant denial or even obstructive behavior such as encouraging ‘normal’ activities in an person with FTD who cannot possibly understand the why or how.

Don’t explain anything to them once you have come to the conclusion that they are ignoring your advice and wishes. Stop validating your actions with people who are ignoring the inevitable. It’s not worth the energy. They will either come around or they won’t. But you have enough on your plate.

Stop explaining.

When you’re down and confused…….

Love the one you’re with 🙂

FTD – Happy Anniversary, you bastard

wedding photo

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

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

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

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

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

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

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

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

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

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

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

Happy anniversary to us.

love champagne

FTD – You deserve it!

No, of course I don’t mean you deserve to have or deal with FTD.

No one deserves the misery that is wrought when the bastard disease comes a-knockin’ at your door. But you deserve the truth. FTD will steal your life. It will steal your loved one’s mental being and by doing so, take away all that you hold dear.

Speaking of what we deserve, it has been some time since I was in the thick of dealing with FTD. Two years in fact. But in the last two years, and for about two years before that, I over-indulged myself to try and combat the horrible feelings and emotions that FTD generated in me. Over-indulged not with food or alcohol, but things. Like having more things would somehow make me feel better. Shopping and indulging myself. Buying “something nice” for myself because my husband could no longer do that for me. There was a sense of entitlement -“you’re going through a rough time”, “treat yourself”, take care of yourself”. It was all ok. If your husband/wife/partner/friend/parent is mean to you because of their FTD, you have the right to eat/shop/spa/pediwhatever.

At least that was what I thought then. It continues, but I am getting better. shopping

I think twice now about buying things I don’t really need. Even begrudge paying money for things. It got to the stage where i would be shopping and I couldn’t even think of something to buy that I didn’t already have. How ridiculous is that? Not that I am a millionaire or anything. I only bought things I could afford. I wear all the clothes and shoes -honestly! I didn’t go into debt to buy things. 

The “deserving” even extended to my behavior. I felt like my irritability, or thoughtlessness, or sharp tongue would be excused by the fact that I deserved sympathy because of what happened to us. I was wrong. No one that I behaved that way towards deserved it. There are no excuses. I’m sorry.

But I do feel that in the midst of the crisis, you deserve a little leeway.

You deserve whatever smidgen of a smile that someone or something throws your way. Grasp it with both hands and hold on for dear life. It has been said that we cannot let each case of FTD take two lives – the one who has it and the  one who manages it. It will wear you down. you deserve better than that. Your loved one does too, but their needs are different now. You on the other hand, have to somehow maintain some kind of a life. Some kind of sanity amidst the maelstrom. It’s easy to get sucked in to the daily drama. The everyday battle between what you used to do and what is considered ‘normal’, and the reality that has now become your life. Constant accommodation of the needs of another is draining to say the least.

This accommodation is vital so that you can preserve some kind of order in your daily life. FTD’ers rely on habit and schedule. Sometimes they revert to old habits, but FTD has modified what they recall about their habits, so they might only partially do them in the same way, or do them completely differently. An example of this would be when my husband insisted on continuing to “maintain” (and I use the term loosely) our pool and yard. He had been taking care of the pool as it it were another of our children for many years. Once FTD took a good chunk of his brain, he kept the schedule but not the quality of the work. So, in order to accommodate his need to continue and maintain some kind of impression of independence and choice for him, I would let him continue his version of cleaning the pool. I would go out early on a Saturday morning while he was still sleeping and take care of the real work myself – sweeping, chemicals etc. so that he did not know I was redoing it. I would move inappropriately stored items from the kitchen cabinets and replace dirty items from the cabinets back into the dishwasher.

Another way I accommodated his dignity and independence was to surreptitiously give money to the assistant at adult day care and she would ‘pay’ my husband for his help that day, as he was leaving with me. He always thought he worked there and was helping people less fortunate than himself It gave him a sense of purpose, pride and humanity to give back in this way.

Wanting the best for everyone is not altruistic, we do all really deserve the best we can give and receive. I’m not talking about designer handbags or Mercedes-Benz here. Just the peace of mind that letting go of what we have previously considered our just deserts brings. We all deserve that. Accepting what is and relaxing about chores not being done or your loved one wearing weird combinations of clothes (or none at all) will bring you much more of what you deserve – peace of mind.

Peace of mind is priceless in the FTD world. Letting go of the need to maintain the old status quo as far as being houseproud, appearance-centric or proud of material things pales into insignificance if you can just spend that time loving and accepting the new stats quo. Having accepted belts and ties hanging from the bedroom curtain rod and cowboy boots filled with rocks outside my backdoor, it was easier to focus on spending as much time with my husband as possible. Yes, having to redo things is exhausting, but believe me, when it’s over, you will wonder what to do with all this free time you have now.

Accommodation does not come cheap in the emotional sense of the word. It is exhausting, but it is less stressful if you place less emphasis on those things that have little or no value to an FTD’er. If you accept their standards instead of enforcing your own. Their standards are not so bad really. Well, anything involving poo is. Poo is not counted in accommodations. Just clean it up and move on would be the best advice.

Your FTD’er, as you have come to know, is not like a child to whom you can teach good behaviors. They have many years of learned habits and behaviors that are hard to break. You can teach your five-year old that it’s rude to point, or speak with their mouth full, or not interrupt. But your FTD’er? Not so much. Their capacity for learning is pretty much gone by the middle stages. Reasoning and rationalization won’t work either. They can’t do that anymore. So don’t frustrate yourself by trying to explain something.

Make a plan, do what you need to do and don’t try to explain in anything other than the simplest terms. And tell, don’t ask. Instead of “Let’s go the doctor’s/grocery store/restaurant”, tell them “We are going out in the car”. Instead of “Could you please shower/put on your coat/eat your dinner?”, tell them “Get in the shower”. Don’t ask –tell.

You deserve to have the smoothest life possible. FTD will throw every kind of wrench into your plans to divert you. Keeping things as simple as possible will give you some space to keep things moving smoothly.

You deserve to love and be loved. You deserve to have the highest quality time with your loved one as is humanly possible within the FTD environment. Don’t expect too much. Be happy with what is. And if over-indulging gets you through the dark days, so be it.

.Macy's bags

Chocolate or Macy’s, choose your poison.

indulgence2

FTD – The cloak of Invisibility. Now you see me, now you don’t,

cloak of invisibility

Being invisible can have its advantages. You can get away with a lot of things if people can’t see you. Even if they can see you, being an invisible character in the story of life can be advantageous too. Middle-aged people are notoriously invisible. You see, they just don’t fit in with the beautiful people anymore. Wrinkles, sagging flesh, balding heads, droopy boobs and butts – well, they’re just not “de rigeur”. I find it amusing that in a crowded bar or club (which I don’t frequent that often these days), I become part of the decor. There, but not worthy of attention.

Screw that. I don’t care to be visible to the Kim K’s of the world anyway.

FTD is invisible. The only evidence of its presence is behavior. Behaviors that don’t conform to our well-ordered norms. Social morés dictate that most of the actions we see demonstrated by our FTD’ers will make them pariahs to all but the thickest-skinned observers. But when your FTD’er is behaving acceptably, they become invisible too. Another grey-hair in the midst of many.

FTD itself can only be seen by sophisticated technology. Even then, there’s no guarantee. Only after the bastard disease has completely decimated what remains of the person you have loved and cherished for so long can the damage be seen by those who make it their business to look. That’s the physical  damage of course. The damage that has been inflicted on everyone else around that lacy brain is immeasurable. Invisible. Felt only inside the hearts and souls of those that remain.

We remain, but we are also invisible. To everyone but those who are the very closest to us.

Invisible-man-007

The person who has FTD –your wife, husband, lover, friend, parent. They are invisible too. Or rather, the inner workings of their brain are. I firmly believe that there is, on some level, a degree of understanding within the FTD brain. A knowledge that they are here, but not with us. A certainty that they are, like unmanned boats, drifting away from their safe harbor. But, because it is invisible, there is no way to know. This must cause fear. I know it would scare me. Maybe that is what incites the behaviors. I know that the degeneration causes lack of insight and inhibition. I know that FTD takes over the brain like an invading army into an ill-prepared country. But the person? What about them? The very essence of what makes us – well, us. Do they scream for attention? Is that what we hear when we look at the OCD? The persistent stacking/folding/calling out in public/being rude?

Or am I giving them too much credit? Is it simply that FTD has destroyed so much that there is little left to cope? Does FTD destroy the soul? The essence of humanity? I know, such a lot of questions. Usually at this point in the article, I give you a list of possible solutions to your problems. A bulleted paragraph of pointers as to how to handle your life. Huh! Far be it from me to pontificate about your life. Only you are living it. I lived my own private despair and hope that I can share what I learned. Usually.

But today, I am more philosophical. Although that doesn’t really help you does it? How about if I share someone else’s words? A slice of how it was for someone who lived and died with FTD? Dr Bob Fay spoke at an Alzheimer’s conference in London in 2003. Here is an excerpt from his speech:

Pick’s is a sodder. It has changed me in subtle ways that outsiders find very difficult to understand, but are all too apparent to my wife and family, It has cut short my career as a General Practitioner; it has stopped me from driving; it has caused much grief and distress to my family. It has a name, but no known cause. It has a very unpredictable course, and it has no treatment. It’s a sodder, it’s a sodder, it’s a sodder. I am not seeking sympathy, but I hope that by conveying the truth about this disease, from my point of view, from the inside, you may be enabled to understand it better. Dementia has no dignity, no compensations: it continues day by day, year by year, to take and take and take, until death comes as a relief to all.

Dementia brings anxiety, anger and grieving to the sufferer. It may be bravely born, but it is not fun; it is not an acceptable alternative lifestyle. Our experience has been that in fact some psychiatrists, geriatricians and neurologists are fairly ignorant of some of the rare young-onset dementias like Pick’s, and if they have areas of ignorance in those conditions, then I suspect that most of the other health professionals who are involved with dementia sufferers, are similarly lacking in knowledge. That is quite understandable and I am not seeking to belittle, after all I was a GP only 8 years ago who was totally ignorant of any dementia that wasn’t Alzheimer’s.

Incidentally what a very unfriendly word “Dementia” is! Technically I must have been “dementing” for about 10 years. To me the term suggests INSANITY (and the dictionaries agree.) To be demented implies being frantic, overactive, out of one’s mind. I haven’t settled on a better term, but I usually either say I have Pick’s disease or that I have a degenerative brain disease. Sometimes I call myself “an old Dementonian” but then people think I’m claiming to have had an elitist education! I think the general public gets misled by the term dementia”.

You can read the rest of Dr.Bob’s talk at http://www.theatfd.org

Anyway. Invisibility. There’s no bulleted list I can write today. mainly because I don’t really know how to help you handle invisibility. I am invisible too, being a fifty-something person. I don’t have FTD (as far as I know). But I have had the misfortune to have seen the effects of the bastard disease on some of the brightest, most articulate and intelligent brains. Invisibly doing its dirty work, like a glass scalpel.

You can remove the cloak from yourself. You can make sure that the world sees what is happening. That is the only way that the bastard disease will ever be defeated. The sword and shields of love will help us. Love and a determination to make people sit up and listen. Become aware. They can ignore us. They can pretend we are invisible.

But we are here. As more diagnoses take place in our booming generation, as more people demand attention from governments, the CDC, society at large, people will want to know. We can tell them “We’ve been there, done that”. “What do you want to know?” “We’ve been waiting!”.

An invisible force. A veritable treasure chest of information. Resources that we are just beginning to realize are and will be necessary. That’s us.

Throw off the cloak. Speak up. Demand attention. Be visible and loud.

Together we are not invisible.

Minions

FTD – Disrespectful in the Extreme

hand kissing

I have been reading and listening to those caregivers who are finding it so very difficult to relinquish the grasp on their long relationships. FTD certainly takes its toll on those.

It’s tough, I know. You live with someone for thirty, forty years and, if there is love, there is some degree of respect. Respect for the person. Not just the outer being that everyone sees, but for the true inner soul that you met, fell in love with and spent at least half of your life with. We have respect in varying degrees for a variety of people in our lives. Parents, teachers, any kind of authority. This is what we are taught if we have good parents and role models. At various points in our lives, we challenge the authority, but in general, we come back around to believing that anarchy just won’t work for us. You can be a hell-raiser for a while, but most people follow a path that holds other people in esteem and tolerates human frailties.

The respect within a loving couple –that indefinable desire to please and honor the other’s wishes and needs –that is a whole different ball game. It begins in the early stages of a relationship when you realize that this person likes you, loves you even, for exactly who you are. Not because they’re your mother, father, sister, brother etc. Not because they have to. Well, they kind of do if they’re your family -right?

This new person that you met, they like you because they think you’re funny, kind, generous, hot. Especially hot if you’re in the throes of teenager/early twenties-hood. Not that hot goes away, just gets replaced by an understanding that it’s not the most important thing. Anyway, respect. Respect is built over the years as you go through triumphs and tragedies together. It is founded on love, bolstered by familiarity and chipped away at sometimes by behavior.

holding hands

And there’s the rub. Once the behaviors of FTD kick in, that’s when the challenge begins. The respect you built over all those years is stood up to by FTD. The bastard disease is no respecter of anything really. Your love, your strength, your once-held firm beliefs that you could stand together and conquer anything.

FTD respects nothing. Not your heart, love, home or family. The respect that you hold so dear is now so severely tested that you will need to find new ways of holding on to those ideals and values that you have built over the years.

  • Stop trying to handle things the same way as you have all your life together. Your joint life is somewhat over. Face it. Your joint life, bank accounts, tax returns, trips, dinners. Joint anything is now so changed beyond recognition that you have to face up to the fact that you are doing this alone. You may have family and friends, but the two of you? That’s done.
  • There will be a time, in the early stages, when you can get your ducks in a row, have your loved one sign advance directives as to their wishes, get your other household affairs in order and so on. But as the bastard disease does its heinous work, you will start to notice that your loved one still thinks that they are capable of making those decisions with you. They’re not. Don’t kid yourself.
  • The decisions you make will be based on what they told you during those early stages. Those times when you sat and cried together about what was to come. Those times when you were in disbelief about the hand you had been dealt. The times when you respected your loved one’s opinions, choices and decisions. Because you always had.
  • The time comes when you have to use that knowledge to guide you through the middle and late stages. And that’s painful. Because you respect them. Or rather, you respect the person they once were and the decisions they did, or would have made. Painful because you don’t want to do it alone. But alone you are, and alone you will decide. You will respect what they wanted. I had a very supportive network around me, family, friends, coworkers, medical professionals. They all respected my decisions because I was very clear about what my husband and I wanted. But I still felt alone.
  • The one person you have always relied upon to support and guide you through life’s bumps can no longer help you. But you still respect them. You still need their input. It is very hard to put that aside and make the leap yourself.
  • Stop asking their permission. They can’t choose anymore. They will say no to just about everything – day care, home caregivers, travel plans, clothing and food choices. Sometimes it seems they say no just for the hell of it. So, don’t ask, tell.
  • Respect their dignity, humanity, personhood. But not their decisions. Five-year-old husbands or wives rarely make good choices for themselves. Drinking, driving, risky behaviors. Reserve the respect for the person you knew. the person you love, but not the choices they try to insist upon.
  • Stop second-guessing yourself. You’ll do the right thing. Good old FTD will make your loved one tell you you’re a bitch/bastard, you’re ugly, you don’t care, you’re having an affair, you’re withholding money/food/pleasure from them. They will spend your money, crash your car, upset the neighbors (who cares about that?). They might even try to divorce you, sell your house, grope a friend, try illegal drugs. They’re not them anymore remember? Don’t sweat it. The FTD would like you to give it everything and then some. It’s already taking everything you hold dear, so don’t give it respect, save that for your loved one’s pride and dignity.
  • Respect yourself. That’s one of the biggest accomplishments you can make in the FTD typhoon.

I respect that you are making this journey. I respect that each of us is unique, our situations similar but different. I respect the differences and make no judgment as to what is right for you. Respect yourself as a wife, husband, father, mother, partner,friend. Respect yourself as a human being with flaws and an identity. Respect your loved one as the focus of what you do but not what or who you are.

Respect yourself.

 

 

FTD & Resilience. Get your Nikes on!

Running shoes

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

Resilience

 

 

 

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

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

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

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

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

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

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

running gif

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

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

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

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

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

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

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

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