June 2014 Update on the Efficacy of Non-Pharmacologic Interventions for Agitation in Dementia

Deborah Thelwell:

Interesting – just jump to the plain English version on page xvii as suggested. Maybe something to try?

Originally posted on Info & Resources for FTD Caregivers from Dr. Chow:

Livingston et al. have created a slightly daunting 256-page systematic review of the latest evidence to support interventions like light or aromatherapy for agitated patients with dementia. They have brought the scientific inquiry to a higher level by stratifying the results of the interventions by the severity of the agitation. This level of specificity hasn’t been investigated before across interventions. Unfortunately, there haven’t been enough trials published for them to use quantitative analysis except on light therapy (bright lights to reduce sun-downing or confusion). But they try to compensate for this by performing a qualitative analysis to report on the efficacy of the other types of interventions available. Of interest, whereas aromatherapy and light therapy were at one time the interventions that tested well, time has told on these results: aromatherapy and light therapy will not work (as caregivers I’m sure could avow) on patients with severe agitation.

Training staff…

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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.

FTD – How to fight like Manny Pacquiao

HopeThe more I read, the more I feel like I have to bite my tongue. Since my journey through FTD is over and I have come out the other side, I am now on a different journey altogether.

I read comments, posts, news articles, medical journals, research articles. They all tell me the same thing. The inexorable march  of FTD continues. But we are no closer to a cure or even any kind of treatment to relieve us of this scourge. It could be likened to a new plague. The current stats are that 15-22 in every 100,000 people will be affected by a non-Alzheimer’s dementia during their life. That’s a lot.

Having lived through the nightmare of FTD and caring for someone, both at home and in residential care, I realize I may have a different perspective from someone who is currently living in the maelstrom. It is so difficult not to look at what they are doing and saying without feeling a strange detachment. Oh, I remember all too well the pain, the anger, the frustration. It still hurts even two years down the road.

But I have become more philosophical. Yes, losing my husband to the bastard disease was the single most life-changing event I have ever experienced. Yes, I still feel disappointed about not having my partner of almost forty years still here to share another thirty. But when I look at the experiences that others are now going through in the FTD world, I want to say “Toss the books and the research. Stop trying medications that may ‘slow’ the progress of this bastard disease. Don’t even think about physical therapy, speech therapy or any other kind of freakin’ therapy. Because it’s all futile. It’s all for nought.

Well,not really nought. Because selflessly giving your love and life to the care of someone who needs it is never for nought. As thankless a task as it sometimes seems, the real person who was your loved one would appreciate it. I think channelling our energy into researching therapies and medications is an attempt at trying to fix things. Even though we know we can’t, we just will not accept that. I’m not being critical, I was just the same way. But obviously, I see it from a different perspective now.

Just do what you have to to keep them and you safe and comfortable. Just do what it takes and then just focus on loving them and savoring every last minute. Every last tantrum, every last angry word. Because however many years it takes, FTD will take them. It will take their soul and yours, swish them around and spit them out. Yours will be tattered and torn. Your loved one’s will be gone altogether. No trace remaining of the darling you loved and cherished. Except in your heart.

You will be caught between hope and closure. No chance of recovery, no final event. At least not until you have been beaten and pushed to the limits of your strength, courage and dignity. We try to hold on to the ‘normal’ for so long, even when normal is a different thing than it has ever been before. Normal can be something different every day.

But speaking of hope, what is it about us –humankind, that clings on to the slightest glimmer of it? Hope, springing eternal, can deceive you into wishing it wasn’t all real. Trick you into pretending that it’s not really happening. Soothe you into comfortable denial.

That actually works for a while. Even when you know what you know. Knowing is not believing. Understanding facts and research does not take away your need to hold on. To stretch for something that was there, but is slowly slipping away. Because you don’t want to believe it. Even I, as a nurse, had moments of frustration where I would beg my husband to “fight it” Fight it! How ridiculous! He could no more fight it than I could fight Manny Pacquiao.Manny Pacquiao

Sometimes things seem so hopeless that you don’t even have the energy to hope. But it’s still there. Niggling away at you. Because deep down, deep inside, you just cannot bear the truth. Cannot accept the inevitable. Until it comes that is. And even then it takes a while.

I don’t wish to sound bitter. I’m not bitter. I’m not even angry about it anymore. I want to channel my energies into making things better for those who still soldier on through this bastard disease. My contribution may be infinitesimal in the grand scheme of things, but I am willing to listen, learn and empathise. And it seems to help. I haven’t forgotten what happened to us. I can just set it aside at times and do something productive about it.

I can’t cure FTD. I think that will be a long time coming.

But I can give it a good run for it’s money. I can help to prevent it from taking more than one victim at a time.I can show people the way through the minefield. If all else fails I can hold their hand.

 In the end

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.

Caregiver Coping Strategies: Managing Stress in Minutes

Deborah Thelwell:

Wonderful and practical examples of how not to let the stress of what you you do get to you. And written so well, it doesn’t feel like someone is preaching at you.

Originally posted on The Long and Winding Road...:

I’m extremely pleased to bring you a 3-part series entitled The Dangerous Dance with Stress and Guilt, by Mara Botonis. Mara is the author of When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Care and is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com

In Part 1 of the series, Mara shares some surprisingly simple ideas for managing stress. The beauty of these tips is that they don’t require you to leave your house, ask anyone else for help, or spend any money.

Caregiver Coping Strategies Part 1 of 3: Managing Stress in Minutes

We’ve all heard the numbers, we live them. We know that according the Alzheimer’s Association’s latest Facts and Figures Report (2014), nearly 15.5 million family and friends provided 17.7 billion hours of unpaid care to those…

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World Cup 2014

The World Cup

On Thursday June 12, 2014, the footballing world will come together to rejoice in our passion. The beautiful game will be in all its glory in Brasil.

We have waited four years for it to come around again. We have waited for our teams to qualify, we have watched as they prepared for what, for some of the players, will be the last opportunity to play for their country on the world’s stage. For others, it will be the first. A time to show the world what they’ve got. A chance to move up to the next stage of their career.

England’s national team was once a mighty, formidable force. Every Englishman truly believed that every four years, we had the chance of repeating our success in 1966. We won the World Cup in 1966. Against the Germans. 4 – 2!! Yeeeesss!! Sublime victory was ours. We dined out on it for forty years.

Sadly, our more recent form belies that glittering past. No longer do we have a solid national pool of players capable of beating the world. Most clubs are made up of international superstars who all go back to play for their own country when the world cup comes around.

My husband was an avid football fan. Eat, breathe, sleep football. He watched it, he played it, he coached it. My sons inherited his passion, so I have it too. Cheering on your country at the global level is an experience not to be missed. Kind of like the Olympics only better. The tribal nature of football extends to extreme rivalry between local clubs, which is only overlooked when the same players play for your country. Steven Gerrard, of Liverpool, hated and despised by millions of fans of rival clubs in England, will be the hero of the hour if he scores for England’s national team against Italy next Saturday.
England football fansI will be among the crowd at an English pub here in Phoenix, screaming with my countrymen that the referee is a wanker, or that Balotelli should be sent off for diving. I will cheer when (if) Gerrard scores. Because he’s English and so am I. But once the season begins again in August and he goes back to being our rival, we will revile him. Ha ha !

Anyway, pardon my digression. My point today is that my husband’s passion for football was slowly eroded by the bastard disease until nothing was left. A piece of his very being –his love for football in general and Manchester United in particular, was eaten away until no trace or memory of it remained. It was a sad sight to see. He would get up and wander around the house in the middle of games. He could not focus for more than about five minutes on his beloved team.

This was a man who could tell you who scored against West Ham in the 23rd minute of the FA Cup Final in 1967. (I just made that up because I have no idea who was even IN the FA Cup Final in 1967). But you get my drift.

The last World Cup was in 2010. My husband had been diagnosed three years earlier with FTD. He was still able to enjoy it and appreciated the spectacle, the skill, the passion.

In FTD, passion is overcome by obsession. But not obsession for the past passion, obsession for the minutest of things upon which your FTD’er will focus on for hours at a time. TV, laundry, eating, cleaning, sleeping, dividing food into minute pieces. Whatever it is, they will pursue it with a passion until it drives you crazy. Until the clothes they are wearing/washing etc wear out. Until all the candy is gone. Until you are exhausted with the sheer persistence of their obsession.

As with all things FTD, this too, generally speaking, will pass. It’s a phase. Don’t you get sick of hearing that.? Kind of like with your kids, biting, kicking, whatever the bad behavior is. “It’s a phase”, “It’ll pass”. well, it usually does in FTD too, only to be replaced with another, sometimes even more annoying/disgusting/upsetting phase. I’m just keepin’ it real here.

Don’t be disheartened. You’re only human. Your best is good enough. (Unless you’re Steven Gerrard). At least it’s never boring having FTD in your life. I’m sure you have figured or are figuring out coping mechanisms by now. Just accept that it is out of your control. FTD is awesome at coming up with some new thing get to you.  It is picking apart your life, piece by piece. It’s a disease. You have something powerful to help you cope.

Love.

Love and memory.

Love for all you are and do. Love for your FTD’er. Whatever they do or say.

Undying, indefatigable love.

Memory for what you had and what you have lost. Memory you can hold in your heart forever.

It might not seem like much right now, for you are having a hard time just getting through the day. One day at a time.

Spend a little time in your bed at night, thinking of good things. Things you shared, things you laughed at, things you loved. The World Cup. Just a few minutes is all it may take to put your head in a better place. It will give you the courage you need to face the next day. Just when you think you can’t take any more.

 

English Flag

Believe me, if you’ve ever seen England play lately, you will know the meaning of true, blind dedication and love.

FTD – World Champion Life-Stealer.

Priorities and Perspective

Your perspective on life is generally formed by the nature and nurture process.

Your personality dictates how you perceive the glass. Half empty? Or half full?half-full-half-empty2

Your outlook changes throughout the various stages of the life cycle.

As in all things FTD, your priorities change from day-to-day, week-to-week, month-to month. Sometimes from minute to minute.

Once a diagnosis (such as there is) evolves, there are certain things that hindsight now tells me that need to be done. Some quickly, some over the early weeks/months. But they need to be done. I have previously written here about the paperwork that you will need as your loved one’s illness progresses. (http://deborahthelwell.wordpress.com/2014/01/22/decisions-frontotemporal-decisions/

That’s all well and good if you know this right at the beginning of the symptoms or diagnosis. Of course, everyone should have a group of Advance Directives. But the reality is that very few do. The one thing I would emphasise here is that somewhere down the road of FTD, you will need some kind of paperwork that let’s you do what you need to do. So, that’s a priority. But here are some other things that you will need to prioritize. They’re not in any particular order. The order will shift as time goes by. One week it will be Advance Directives, the next, how do you explain to your family what’s going on. Choosing a place when you are faced with a decision to have your FTD’er live somewhere else. So, here are some things to think about:

  1. Legal representation and paperwork. If you don’t have power of attorney of your loved one’s healthcare, mental healthcare and financial (durable) interests, you may have to apply for guardianship. Not a pleasant process. At the moment, “Elder Law” attorneys seem to be the most well-versed on Federal and State Laws around your rights as the spouse/child/partner of a person with any kind of mental incapacity. That’s because they have been dealing with Alzheimer’s patients’ children and family for many years now. They can tell you how you stand as far as assets, liabilities, legal rights, Disability and State healthcare/VA assistance. But shop around. One lawyer told me that I would have to divorce my husband so as not to have my income/assets counted when I applied for State Long Term Care Benefits. This was not true.
  2. Discuss the long-term effects and outcome of the disease with anyone you love and who loves you and your partner. This will be vital later as you will need all the help and support you can get.
  3. Tell your employer. Be honest. tell them it’s a terminal illness that may require you to take FMLA or  personal time at frequent intervals. They will be much more understanding than if you keep calling in sick.
  4. Write, tell, or show your spouse/partner/friend/parent how much you love them. It might not mean much to them later, but it does now. It will be something to draw upon later, when they are no longer aware or care.
  5. Accept. I have said this many times before, but it really is the key to getting through. Accept that they will not be aware. Accept that the disease is terminal. Accept you have to do and deal with the unthinkable. Accept that not everyone you know will understand. You may lose friends. Your family may be in denial. You may feel alone. You’re not. There are millions of us out here, you just have to look for us. Accept the reality and don’t pretend its not true. Oh, it will work for a while, but eventually it will come crashing down around you. That comfy world of “it’s not really happening”. It is. This cruel, indiscriminating bastard of a disease will drag you down if you let it. Don’t let it. Accept.
  6. Make time for what you want. Well, I know that what you want is for it to go away like it never happened. But that’s not going to happen (see item 5). above). You have to learn to want different things, in addition to your changes in need. You need support. You need him/her back. You want them back. But you can’t have that. So, look for something that will take you away (literally and figuratively) from the storm that your life has become. Even if you have never tried yoga, meditation, pedicures, massage. Whatever it takes to remove your mind and soul from the horror, just do it. (I seem to be quoting Nike a lot just lately, but it’s so appropriate!)

Priorities. They change all the time throughout life. Normal life.

Priorities

Flexibility is the key to prioritizing in FTD. Be prepared to change your plans in a moment. If you have children, remember what it was like to get ready for a trip or even just a day out when they were small? A military exercise, right? If you don’t have children, think about how you would herd cats. Getting a person with FTD ready for something is much the same. So you have to prioritize. Do all the cats have to go? Do they all have to be ready at the same time? Do you have to take your loved one? Can someone stay with them?

Priorities2

Priorities. Is it absolutely vital that you go on vacation/to a restaurant/ that family wedding? We hold on to these things because we are desperately trying to maintain some semblance of normality. To continue doing what we would have done before FTD came to call. Because, deep down, we resent that our lives have been turned upside down for no apparent reason, other than the universe is conspiring against us having the life we thought we would have. We cling lovingly to the old ways. The old “us”. The old routine. That’s human nature. We desire stability and familiarity. So it’s very scary when those things are chipped away. Piece by piece, our lives as we have come to know them slowly disappear. So the priorities must change too. Now it’s important to savor every minute. Every moment before it is lost forever. Every smile, every kiss, even every grumpy exchange. For those will become precious too.

I will close with the telling of a story given to me in an FTD support group to which I belong. It tells of a breakfast. An egg and bacon breakfast. The chicken gives her egg willingly then walks away, satisfied that she has helped someone with her donation.

The pig is totally committed.

You are the pig.

All of us FTD caregivers are pigs. Totally committed to easing our loved one’s journey. Prioritize both of your needs. Go with the flow. Change on a dime. Love the one you’re with.

Be the pig. Oink! Oink!

pig bacon chicken egg

FTD Priorities and Perspective.

Touch

 

Fingers touch

“Touch has a memory.

 O say, love, say,

What can I do to kill it

    and be free?”

- John Keats

Touch is one of the earliest sensations that we experience.

Even in our mother’s womb, we feel warmth, comfort, security.

We feel movement of fluid. We feel vibrations of sound. We feel the movement of our mother’s body as she moves through her daily life.

 I like to think we even feel love.

Throughout our earliest days and on into childhood, most of us feel the loving touch of those who are tasked with watching over us. Holding us, stroking, hugging and kissing us. We touch things with our hands, our mouths, our feet. Things and people touch us. Touching is one of our ways of discovering the world.

Later, as we grow and mature, we experience touching in a different way -caressing, exciting, pleasing.

For what is a life without those tactile sensations that we can both give and receive?

Sometimes touch can be unwanted. Sometimes touch is confusing, painful and distressing. It can be cruel and physically painful.

But the touch of those we love is needed, wanted, yearned for even.

But back to Keats. Touch definitely has a memory. The memory of private moments, loving kisses, laughter and sadness. We touch each other for all those reasons. And when that time is done, the memory remains. The memory of a touch can definitely imprison one, making you want to be free of the pain it causes. But not free of the memory, just the pain.

This yearning for touch, the memory of touch, begins long before the physical departure of its source. The caregiver yearns for what is now lost. The lost one yearns for those infantile touches again. The hugs, the security, the warmth. Regressing to those comfortable days in the womb. Safe and cosseted.

In FTD, once cognitive skills decline, the primal senses become more acute. The simple hug or holding of hands becomes like a lifeline. In the very late stages, as with many other fatal illnesses, just being close or touching a hand, face, or head, can be soothing.

Touch 3In my profession as a nurse, a healing touch has been shown to be a real and evidentiary  thing. I have held complete strangers as they breathed their last. Knowing that one of their last sensations is that someone was holding their hand, soothing their brow.

 

 

Touch 2I have been the first person to touch a new body as it emerges into our world.

 

 

 

I like to think that there is a memory somewhere deep inside all of these souls that knows I consider those first and last touches to be a privilege of the highest order.

In my personal experience,  I can attest that the memory of those final touches at the end of our FTD journey will live within me forever. Holding our granddaughter is still branded in my touch memory three years after she died aged three months and seventeen days. Painful or not, the imprint of the touch on my heart, hands and face is a reminder of where we have been, who we are and what we have loved and lost.

Touch. “What can I do to kill it and be free?’. Thankfully I don’t want to. Killing the touch memory would be to kill everything that I hold dear. I can tolerate the pain. I can tolerate the longing. But losing the memories?

I could never tolerate that.

 

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

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

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

Guru

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

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

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

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

Love treeUnfortunately, unrequited love is harder to handle.

TEN IDEAS FOR NOT GOING AROUND THE BEND YOURSELF

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

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

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

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

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

quilled hearts

 

Frontotemporal resourcefulness – get crafty!

FTD – Frontotemporal Tastes and Delights

oliver-twist-o

 Food, glorious food!

Food is such an important part of our lives.

Some of us have too much, some of us don’t have enough. Everyone has their favorite. Everyone has the stuff they hate.

The many variants and stages of FTD are related to food in so many ways. Like most phases, the food phase is insidious in onset. You suddenly realize that your loved one is raiding the kitchen cabinets, the cookie jar, the fridge, and eating everything in sight. If they are home alone for much of the day, it may take you a while to realize this. Many FTD’ ers develop an extremely sweet tooth and will devour ice cream, candy, chocolate, puddings and pies.

As is the habit of many of us who have hit the cholesterol and sodium awareness phase of our lives, we are accustomed to watching what we eat. We try to maintain a somewhat ‘healthy’ diet and exercise when we can. Many of our loved ones have always been fit and healthy and remain so throughout their encounter with FTD. So it rather goes against the grain (if you’ll pardon the pun) to rein those habits in and let someone eat and drink whatever they like.

I learned to deal with this via a mentor and expert in all things terminal, including FTD. Her philosophy is “chocolate is love to someone who is dying”. They don’t care if they eat healthily. They don’t even know what that means anymore.

Chocolate

The truth is, many of us are comforted by food. Not necessarily sweets either, although they seem to be popular with FTD’ers. We all have our ‘turn to” favorites. Mashed potatoes, mac and cheese, chicken soup – sometimes it’s something that evokes a comfortable memory or just a general feeling of security.

We are consumed with the preservation of life. But I am here to tell you that my husband would never have thanked anyone, including me, for extending his life one more day in the condition that he was. As healthy as he had always been, he would prefer to eat his candy and cookies and to hell with it.  I am sure that many people in the midst of FTD, if they could tell you, would say the same.

I listened to psychiatrists, psychologists and other people talk about “quality of life”. What the heck is that when you have an untreatable, incurable disease that no-one really knows much about? Comfort should be the only priority. If comfort comes in the shape of a Hershey bar, then so be it. Quality of life, like pain, should be what the patient believes it to be. This may be the single most important thing that you advocate for – what your loved one believed to be “Quality”, when they still understood their life.

Only you can hold out and give them what they want. If your goal is to make their last years, months, weeks, days as pleasurable and comfortable as possible, then, in the words of Marie Antoinette:

“LET THEM EAT CAKE!”

(I always imagine her saying this with “Daaahling” at the end, in a voice like Zsa Zsa Gabor)

Marie Antoinette

At least until they can’t anymore. Then you are faced with another decision. It may be easy for you, as it was for me. I knew, without a shadow of a doubt (and had it in writing), that the last thing my husband wanted was any form of life-extending procedure, such as a feeding tube. Our thoughts were simple. If you need a feeding tube to save or prolong your life and there is no hope of recovery from your dreadful condition, what exactly are we saving you for?

This may sound extreme or heartless, but believe me, saving someone and keeping them in what can only be described as a state of purgatory, with no hope of rescue, is a decision that many people come to regret. I see it every day in my work. Because making the decision to pour liquid down a tube into someone’s stomach, is only temporary. At some point in the not-too-distant future, the decision will need to be reversed. Then you have a completely different set of emotions to deal with.

It feels like you’re killing them, starving them to death. You yearn for the cake days. The days when they would only eat Cheerios or whatever.

As odd as it sounds, that happened to me quite often through our journey. As hellish as each stage was, the next was worse. I found myself longing for days when it was only the clothes-changing that drove me crazy. Or the washing of dishes, or filling boots with rocks. Every time a new, worse period began, I would have gone back gladly.

And when it was all over, I even found myself looking back fondly on days when we drove to Day Care, or I visited one of the different facilities where my husband eventually lived. Without me. Even the most hellish of days was missed. Still is.

Funny what you think is okay. It changes every day.

Cake is okay. Chocolate is okay. Respecting someone’s wishes is okay.

Doing the right thing is okay. The right thing for you. The right thing for the one you love.

It might not be the thing or things you want to do, but that’s okay too.

Your standards of okay are different now.

Whatever, whenever are the golden rules. Long may they reign!

candy cake