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

TGIF! – Not in the world of FTD…….

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

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

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

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

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

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

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

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

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

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

FTD – Life in the Past Lane

 

My post today is not really about FTD. More about what has happened in the post-FTD era. Your experience will be vastly different to mine. Perhaps my sharing will help you. But I think it will help me more. FTD has shaped my life in ways that are somewhat indescribable, but I will do my best.

Last September, I had cause to get together with family members and many old friends for the first time since the bastard disease took my husband. I was able to successfully coordinate seeing many people in the space of 2 weeks during a visit back to the UK.

My husband had died a year before and I had not seen most of them in the interim. I expected it would be emotional and it was. More for all of them than me. I had had a whole year in which to begin reshaping my life. They all said I have not changed. But I am changed. I think for the better. I have a life that my husband and I started together. A different life than the one I envisaged six years ago, but still a life. A life that we filled together with stuff, people, and love. Only now I am enjoying it without him.

People never cease to amaze me. Their perception of widowhood is varied. Of course, I am not the only widow they know. There are many women much younger than me who have arrived at widowhood unexpectedly under much more tragic circumstances.

One of the things you ask yourself when newly widowed is “Who am I?” You have been someone’s daughter, wife, mother, sister/son, husband, father, brother your whole life. Figuring out who you’ve become in the interim is not easy.

Then you realize that you haven’t become anyone else. You’re still you. All those little things you never liked about yourself are still there. Ha!

But, here’s the thing. The new you is the old you with a new view on the world. It’s as if you can see things more clearly somehow. When you’re part of a couple, a partnership, you tend to like the same things, move in the same circles. That’s why you’re a couple —right? You even do things just because you know it pleases the other person. When you don’t have to that anymore, it feels weird. You don’t really know what to do.  But then you begin to see things from an entirely different perspective. Instead of seeing the world as one of a pair, and what it means to both of you, a collective being like the Borg, you see it as a single entity. What it means to you, not what it means to us. That’s not to say that when you were part of a couple you didn’t have independent thoughts and opinions. Just that somehow, those things are less important than just being us. Couple on the beach

Of course, you miss all the old things. The sharing, the affection, those small things that were only funny or meant something to the two of you. That happens while they are still alive. But acceptance brings a power from within you. A power that you didn’t even realize you had. It’s the power of you. Not pleasing someone else brings freedom. Not the kind that you would have wished for necessarily. But the freedom to have opinions, make decisions, do things that you may never have even considered before.

Ours was not the kind of relationship where one partner had dominance over the other. Not the kind where either told the other one what to do. It was built on the respect for one another’s feelings and sensitivities that develops over many years of watching and experiencing life’s trials and tribulations together. Years of success and failure, tears and joy. You may not always like your partner, but you always love them. Even when you don’t like their behavior, opinions or decisions. You still love them, if your love is true and unbending.

So the freedom that widowhood brings is bitter sweet. You are free to say, think, do whatever you please. But often you don’t want to. Or you have forgotten how. Or maybe you never even knew.

I went from my parents house to being married, other than a short period where I lived away from home with friends. So complete independence was somewhat of a mystery to me. I had never lived alone, never been financially independent, never owned my own home. Never did any of the things that young, single women take for granted these days.

I was born into an era of building and rebuilding lives that had been irrevocably changed by World War II. My own parents and their families had been affected in all the ways that wars cause to people. They had lost family members, been bombed in their homes and lived off government food rations for years. My paternal grandfather survived the D-Day landings. My maternal grandfather was captured and taken as a prisoner of war for years. My mother never got over that. He was gone during some of her most formative years. She learned to be independent, take care of her little brother while her mother went to work. factory women

In the absence of another provider, there was little choice. Learn how to do it, or live in abject poverty My grandfather was appalled when he returned home after the war that my grandmother knew how to change an electrical plug and do other home repairs. Before that she had been a housewife, relying on the breadwinner to care for her and their children. He wanted to know who (what man) she had in the house to show her how to do all those things. But there was none, she just figured out what she had to do to survive.

When I was born, ten years after the end of the war, things were beginning to improve. There was more food, a better infrastructure and just an overall feeling of hope. The 1950s and 60s were a re-awakening of everything good that had been destroyed for many people.

The fighting spirit instilled in my mother by her parents and their experiences has somehow been passed to me. Whether it’s genetic or not, I’m not sure. My grandfather survived three years of starvation and god-knows-what in prisoner-of-war camps in Italy and Germany. He never spoke of it, but whatever it was that kept him going is most certainly present in my mother and has been passed on to me.

I am not comparing the experience I went through in caring for my husband and his dementia for five years to my grandfather’s imprisonment. Not at all. But I came to understand a different kind of incarceration. One of the spirit. The kind that beats you down so many times, you often wonder if you can survive it. It’s not a physical beating; there are no visible scars. It is emotional bruising that takes a long time to get used to. I say that because it doesn’t go away. You get used to it, but it doesn’t go away. It’s like a permanent deathmark. A port wine stain of the soul. No surgery could take it away.

You feel like your port wine stain makes you stand out. Being by yourself in the midst of a crowd of people, feeling different, is a strange experience. I wouldn’t call it loneliness. I don’t feel lonely. I miss my husband, of course I do. I miss the familiarity, the everyday grind of normality. But I often wonder what we would be doing if things had taken a different course. I don’t dwell on it too long because it’s not a very productive way to think. It’s hard to describe your thought process when experiencing losing someone close. It’s different for everyone of course. No one had what you had. No one shared what you shared.

It’s so easy to slip into Clichéland —“I’ve lost half of me”, “I feel like part of me is missing”. All true of course, but so inadequate when trying to describe how you really feel. I’ve read many books, articles, newsletters sent by Hospice and the funeral home for the first year after my husband died. They are well-intended and actually sometimes food for thought. But still, there is this indescribable hole inside me that defies illustration.

Truth is, sometimes you forget what’s happened. You get on with the day-to-day stuff. Your lost one pops into your mind frequently of course, but you have to work, sleep, eat, see people, so the experience becomes even more personal. Even less worthy of sharing. Because really, no one want to know. They don’t want to see it, hear about it, have to remember it. I’m not being self-pitying here, just realistic. People tell me their own woes. Hospital visits, deceased parents, sick kids. It’s all just life.

I accept life. I accept that shit happens. Most people fall into two categories. They were part of what happened. They saw the anguish, the pain, the screaming, the tears. Or they weren’t. So the only point of reference they have is how it affected them. How close they were to the proceedings. How much they were involved. Other than that, it’s all mine.

Seeing people who remind me of my marriage and life with my husband is often painful. But there is a kind of numbness that exists. Psychoanalysts would probably say that it is my brain trying to protect itself from the pain. But I have faced the pain. It’s there. I can’t ignore it. I have embraced it just like someone who has to inject themselves with insulin every day. I accept that it is a part of me that will never go away. Having pain doesn’t mean I can’t be happy with my lot in life.

It is what it is. An overused saying but oh so true. So, as my life is not what I envisaged before the bastard disease took hold of it, I don’t really envisage any more. I take moments, days and keep them in my new memory bank. I have put the other one onto a virtual jump drive in my mind, where I take it out frequently and look at it. Sometimes every day, sometimes less often. It’s like a photo album that catalogues all my experiences for thirty-eight of the first fifty-six years of my life. For all I know, I could have another fifty-six left to go yet. I’ll need another jump drive.jump drives

I have other albums from before. From happy childhood days. From teenage years. I look at those too. But this new album that I’m working on; this new jump drive that is my widowed life is a little different. Because the pictures are superimposed on the pictures from all the other albums. So, sometimes, the pictures are out of focus. Blurry. Unclear as to what they mean or symbolize.

I quite like it. The blurriness. I can see what’s happening, I can see what happened before. Some people around me can only see this album. Only see today’s pictures. It takes a special kind of vision to be able to sort the images from one another.

So, where to from here? I’m not making any plans. I like the day-to-day. I find that when you make plans, something usually comes along that presents another path. Sometimes it’s better than the original plan. I like that. And if it’s not, well, so be it, It’s just another file on the jump drive.

FTD was an experience in my life. Not one I would have chosen, but one that came along anyway. “It” took away what I had become, what my husband was to me. Then, eventually, it took his physical entity. If you are the type of philosopher that believes everything happens for a reason, then I am still waiting to find out what that reason is. But it’s not been that long. I can wait. Until FTD came along, my life, our life, was ticking along quite nicely, just like everyone else’s. Ups, downs, but mostly in between.

That’s life. That’s how mankind has moved through thousands of years of existence. Doesn’t help when life/FTD/cancer/people step in and change it, but no one ever said that you could have everything you wanted.

That’s life.