FTD observations – “Oh, THOSE people”

“Those people”. You know those people who ruin your life. The ones who, when you have FTD, tell you that you can’t drive, go out alone, cook anything, use sharp scissors and pretty much anything else you want to do.

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Those people are the pits aren’t they? When you have FTD, they make you take a shower and change your clothes when you don’t want to.

Those other people – the ones who don’t live at your house, but somehow seem to control your life, they take away your driver’s license, tell you that your new debit card is in the mail and block your internet.

Those people at the supermarket, they count out your change, but you’re not sure if it’s right or not. Those people at the airport, they tell you to walk through the little tunnel thing and then tell you to stop when it beeps.

If only your mouth worked properly, you’d be able to explain that you’re not a child or an imbecile. It’s just that your brain gets mixed up.

cookies and ice cram

Those people keep hiding the cookies, damn them. And the chips and the ice cream. When you put your boots in the freezer though, you found the ice cream. And ate it. All of it. Yum.

 

When you spoke to those people in the bar, they smiled and nodded. Then moved away slowly. When you asked someone a question in the bookstore, they turned and walked away. Perhaps they were foreign and didn’t speak English?

When you went into the bathroom, those people helped you take off your shorts and underwear. But what is that white round thing on the floor? What do you mean, sit down? You’re standing there half-naked. But what are you supposed to do now? Pull up your shorts and go out of the room. Oh, so frustrating, they just don’t get it, those people.

When you have FTD, those people just don’t get it.

Blackadder-Confused-Look

FTD – Can You Feel It?

FTD – Can You Feel It?

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Love.  It’s all You Need, according to Lennon and McCartney.

It’s All Around, according to the Troggs and Wet Wet Wet.

I have spoken of it many times on these pages. I speak of it frequently in my life.  It’s in my head all the time. There’s no getting away from it.

Even in the deepest throes of FTD, somehow it survives – thrives even.

I happened upon this interesting article about a letter written by John Steinbeck to his son, away at boarding school. The son had written to his father about his deep love for a girl in his class. Asking advice about how he should handle his feelings. His father responded:

“There are several kinds of love. One is a selfish, mean, grasping, egotistical thing which uses love for self-importance. This is the ugly and crippling kind. The other is an outpouring of everything good in you — of kindness and consideration and respect — not only the social respect of manners but the greater respect which is recognition of another person as unique and valuable. The first kind can make you sick and small and weak but the second can release in you strength, and courage and goodness and even wisdom you didn’t know you had.

Glory in it for one thing and be very glad and grateful for it.

The object of love is the best and most beautiful. Try to live up to it.It sometimes happens that what you feel is not returned for one reason or another — but that does not make your feeling less valuable and good. “

– John Steinbeck , 1958

John certainly had a way with words didn’t he?

I especially like the parts about

“an outpouring of everything good in you”

and

“ (it) can release in you strength, courage and goodness and wisdom you didn’t even know you had”.

He could have written it to the caregiver of someone with FTD.

For myself, the love I had for my husband was probably the only thing that got me through those often very difficult times. Once you relinquish the fight and accept the inevitable, your love will give you the strength to handle tricky, embarrassing and downright scary situations.

If, for some reason you have lost the love you once had for them, take courage and strength from the thought that I and many other nurses like me, are able to offer compassion, caring and assistance to those that we don’t “love” in the same way as we do our families. But we love them all the same.

We love the privilege of caring for another human being. We love sharing some of their most private moments. We find the strength to overlook their unpleasantness and rudeness, which we know is driven by fear and vulnerability.  I hope that even if your love for your spouse, parent or friend has waned, you can find it in your heart to do that most selfless thing and care for another person for what will probably be a relatively short episode in your life.

I know that not everyone aspires to be a nurse. I’m not saying everyone can do it. It’s not easy.

It’s not easy even when you love them.

You also have to love yourself enough to know when you can’t do it anymore. There’s no shame in that. You’re human.  Not Superhuman. You’re scared. You’re angry and frustrated. That’s alright. You have my permission to scream, run away, punch the wall.

The last sentence of the Steinbeck quote leaves an indelible mark on me –

“ It sometimes happens that what you feel is not returned for one reason or another — but that does not make your feeling less valuable and good”.

In other words, keep doing what you do – loving and caring. Your FTD’er will probably not reciprocate in a way you would want. Although even up to the end of his life, my husband would randomly kiss me, or make some kind of gesture of love. Well, I like to think so anyway. Maybe he would have kissed anyone who got that close!

When he still had occasional lucidity, he would tell me he loved me with a sadness in his eyes that broke my heart. I really believe that some part of him knew what was happening. The moments were fleeting and became less frequent as the disease progressed.

Keep your love close. It will see you through the darker times. Sometimes it’s a little hard to see and recall, but it’s still there.

Like a little firefly in the dark.

Glowing.

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F. T. D. – Fears, Tears and Dedication.

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I cried today.

I cry pretty much every day actually.

I’m not asking for sympathy, just stating a fact.

It’s not always because I am sad. Sometimes it’s because something just makes me smile. Brings happy memories. Sometimes it’s because I am mad. (not in the psychiatric sense you understand).

Sometimes, it’s just because.

Today I cried at a pot of jam that someone had made and given to me. Ridiculous, right? I cried because she had made it on September 17th. My oldest son’s birthday and also the anniversary of my husband’s death.

Frontotemporal Degeneration does not just degenerate the physical brain cells. It degenerates lives, spirit and entire families.

F = Fear. Fear for the present, the future and everything in between. But fear is conquerable. Sometimes Fear brings out the best in people. It gives you the ability and strength to do things you never thought possible. Deal with things you never imagined. Fear does not always have to drive reticence or pain.

T = Tears. Tears of joy, of pain, of love. Tears can  be great healers.  A release, a solace in the darkness.  Whatever FTD takes away from your loved one, it cannot take your spirit, your love, your fight. Tears are our weapon against the bastard disease. Tears give you the strength to tackle each day, each hour and get to the next one intact. Sometimes, in an inexplicable way, tears can communicate to your loved one. Even when their communication skills are all but gone, somehow, tears get through. Even though they cannot speak or understand most of what you say, tears have a way of demonstrating your frustration, pain or love.

D = Dedication. Yours and those around you who cannot imagine anything else but their unconditional love. Love for your spouse/friend/partner/friend and you. The love that sees you through belligerence, incontinence, weird social behaviors, aphasia and physical disappearance. The dedication is not planned or discussed. It just happens. It may not happen for all your family or friends, but you will feel it. I felt it even through the magic of the internet. I felt every note, photo and sentence written on our Caringbridge page. I would highly recommend  the site (www.caringbridge.org). It will enable your distant friends and family to send words of dedication to you. Your dedication can be seen by them too. When you have family on the other side of the world, as I do, it helps them and you to communicate what is going on and lend support to your dedication.

Frontotemporal Degeneration. It’s just a relatively short period of your life. Doesn’t seem like it at the time, but when it’s over, you think -“Wow! That was five years? (or eight or ten). In the midst of the storm, time passes in slow motion. But afterwards, you wonder where it went.

It was swallowed up by fear, tears and dedication.

I dedicate this piece to all of you who are handling FTD right now.

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

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

 Santa smokingIn 1984, there was a U.K. TV commercial that told us that  “Happiness is a cigar called Hamlet”. (I have  tried a thousand times to embed the video clip here, but apparently the person who posted it on YouTube and stole it from wherever, would like to keep it private for some reason only known to themselves. Why post on YouTube if it’s private? And not even yours?).

If you really want to watch it, here is the link:

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

Anyway, I digress. The series of commercials  – Sir Walter Raleigh placing his cloak over a puddle so that Elizabeth I would not get her feet wet and then her falling down the deep puddle hole. The parking garage barrier coming down on the head of a man showing off his Ferrari and flirting with a passing girl being just a couple of examples. The premise was that even under the most difficult of circumstances,  as long as you had a Hamlet cigar, you would be happy. The background music was always the same – J.S. Bach’s “Air on a G-String” – slow, soothing, mellow.

Of course that was before smoking was banned pretty much everywhere apart from the privacy of your own back yard. 

If only. If only smoking a cigar was the key to happiness.

Anyway, after the last couple of somber posts, I thought I would bring a lighter air to these proceedings and talk about happiness.

Christine Carter (http://greatergood.berkeley.edu/topic/happiness) states:

“In addition to making us feel good, studies have found that happiness actually improves other aspects of our lives. Here is an overview of some of the good stuff that research has linked to happiness.

Ha! Check out bullet point #5!. Coping with stress!. Well, you’re good at that right? Anyone dealing with FTD in their family or a friend has to be good at that.

The 14th Dalai Lama:

“The fact that there is always a positive side to life is the one thing that gives me a lot of happiness. This world is not perfect. There are problems. But things like happiness and unhappiness are relative. Realizing this gives you hope”.

Wow, that’s deep, man.

Deep but relatable and true.

Related to FTD – the multitude of problems it brings are never positive. But there are humorous moments in even the darkest depths of the bastard disease. Somehow, those of us charged with watching over the FTD’ers can find humor and hope. A wry irony develops which sometimes makes you smile.

An example – my husband had an old pair of cowboy boots that he had not worn for years but would not part with. In the middle stages of FTD, he found a new use for them. He filled them with large river rocks and put them outside the back door. Simple really – what else would you do with them? Some people might think it sad or offensive that I would find it funny. But his old, practical self was at work, albeit in a nonsensical way. It reinforced the fact that he was still in there somewhere. And happy.

If I laughed at something he did or said, he would laugh too because he somehow knew it was funny, but not how or why. That in itself is a little funny too. Maybe he was just laughing because I seemed happy to him. Later, it didn’t matter to him if I was happy. So I am thankful for that ‘middling’ time when all was relatively calm.

Relatively. (Back to the Dalai Lama again).

The very ‘normality’ of some of his ideas and thoughts almost made me second guess myself sometimes! He was so adamant that he was doing something the only way possible that he could not understand how it could be any other way. Hanging all his belts and ties over the curtain pole for example. It didn’t hurt anyone and it made him happy – so what the hell?

Eleanor Roosevelt said:

Eleanor Roosevelt

“Happiness is not a goal, it is a by-product”

This is so true in FTD. It’s a by-product of everything else in your life. But mostly it’s a by-product of how you handle those things. Choosing to be happy whatever is going on. You can’t strive for happiness. Even on those darkest of days, happiness can be found in just being together and savoring those moments which you may never have together again – a new grandchild, Manchester United winning the Premier League title. Photographs of times gone by. Music. Movies. All happiness-makers. Just in a different way than before. Simpler somehow. But still of great value.

Looking back, I found a perverse happiness in just taking care of the man I loved for so long. I was privileged to do it. It was my reason for being here, I think. As hard as it was to do. As hard as it was to lose him. I feel that I did the best for him. That I made him happy. So that made me happy too.

I will leave you with a few amusing quotes on happiness:

“Happiness? A good cigar, a good meal, a good cigar and a good woman…or a bad woman; it depends on how much happiness you can handle.”  – Unknown

“A man doesn’t know what happiness is until he’s married. By then it’s too late.” – Frank Sinatra

And my personal favorite:

“Happiness is like peeing in your pants. Everyone can see it, but only you can feel its warmth.” – Unknown

Light up a Hamlet. Who knows? It might just work.

HappySky

Frontotemporal Fun ? Oh no it isn’t!

birthday images Today is my birthday. The second one that my husband has not been alive for, the third when he was not with me. Today is also the second anniversary of the day that he left our home for the last time. He went into a facility that would care for his new needs better than I could. A place where they would try new medications and deal with his physical needs. His frustration and combativeness. His lack of insight into the truth. The bastard disease had finally pushed him to new limits of mental anguish. Unable to fully understand what was happening, but alert enough to know that something was. Something that had previously been insidious but now was running rampant through his brain. It scrambled his thoughts and erased his prior life like some brainwashing machine.  Repeated confrontation and insult to an already dilapidated organ.

  • Pleasure takes on a different form in FTD. It becomes more basic. Those things previously enjoyed are erased.
  • Food often becomes a source of obsession. Sometimes the person will only eat one or two specific items for a while. Sweet things are always welcome however!
  • In earlier stages, things like jigsaw puzzles or games meant for pre-teens can capture their attention for a while.
  • People with FTD often enjoy physical activities like dancing, kicking a ball around or walking.
  • Lack of emotional insight can inhibit the ability to experience pleasure.
  • Aphasia or just the inability to express thoughts can lead one to thinking they don’t like anything.
  • Just keep trying different things to eat, drink, do.
  • There’s nothing to say YOU can’t still try to have fun.

Anyway, my blog topic  today was meant to be about fun. Nothing funny about FTD of course. There are moments of humor, but not really fun per se. As the responsible party of the group, you always have to be on the lookout for inappropriate behavior and frustration. It’s never-ending. You never get a break, even when you’re doing something fun, like a vacation or Christmas. Because your FTD’er is never on a break.

The bastard disease doesn’t take a break.

Hotel Del

So here I am at this beautiful hotel in California. Celebrating my birthday with some of my favorite people in the whole world. There are more favorites missing, but we’re still here to have fun. Fun means something completely different nowadays.

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Caught in possession of FTD – Objets d’alan

Wish in a bottle Stuff, possessions, belongings, things – shiny objects.

Clothes, jewelry, books, papers. Treasured pictures of a lifelong hero.

Stupid stuff like a tatty old messenger bag.

A Target tee shirt – no value but one of the last things he wore.

No intrinsic value.

What has value now?

Family – children, grandchildren, brothers and sisters.

Friends – old and new.

But the Target tee-shirt – why can’t I throw it away? I bought it long after his diagnosis, there are no really good associated memories. It’s washed-out, shabby and smells of the last Care Center he was in. Doesn’t even smell of him. It was in a drawer, washed and folded.  Clean. It ended up in the box of belongings I brought home.

One thing I have never been able to find since he moved out to residential care has been his wedding ring. He wore it on a chain around his neck for years. But in the middle stages of his illness, while still at home, he would roll it off over his head if it was irritating him.

He would hand it to me with a grunt as if to say“Here, take care of this”. So I did, I treasured it. If he handed it to me while we are out, I would put it into my handbag. Then when we got home, I would transfer it to the jewelry box for safe keeping until he asked for it back.

Once I got home from work to find all my handbags (and I have many) strewn across the room. I asked what happened and he could not tell me.

I eventually got that he was looking for something (after a long game of Charades) and by a sequence of elimination, I realized what it was. The ring.

I took it out of the jewelry box and handed it to him.

That was the last time I ever saw it.

In the day-to-day melee that followed, I never noticed that eventually he was not wearing it any more. It was only when I sorted his things out after I had moved him into a facility that I realized I hadn’t seen it for ages. I felt so bad about it. Still do.

Wish I could find it. I keep hoping it will turn up someday.

I have no idea how that will happen since I have moved house and downsized pretty much everything since then.

wishng ring 2

  ……just wish I could find it.