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

eeyore birthday

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

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

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

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

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

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

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

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

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

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

love champagne

FTD – You deserve it!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

.Macy's bags

Chocolate or Macy’s, choose your poison.

indulgence2

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

cloak of invisibility

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

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

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

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

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

Invisible-man-007

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

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

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

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

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

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

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

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

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

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

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

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

Together we are not invisible.

Minions

FTD – Disrespectful in the Extreme

hand kissing

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

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

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

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

holding hands

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

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

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

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

Respect yourself.

 

 

FTD 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.

Angry-Red-Smiley-Wagging-Finger-107x107

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

Frontotemporal Visitation – yes or no?

Prison barsTo visit or not to visit, that is the question?

You hate to see them that way, but you want to see them.
You feel guilty if you don’t go, saddened if you do.

Keeping a relationship going with your loved one with FTD is difficult at the best of times. Once they are institutionalised, you are faced with a whole new set of decisions.

Just making the decision to ‘place’ them somewhere other than your home is one of the most difficult things you will ever do.

If, like I did, you try to make their new place as ‘homely’ as possible, you may be very upset when they don’t even notice the favorite pictures on the wall. The photographs of your grandchildren. Or a memorable trip you took together.
They won’t notice the cashmere sweater you got them for Christmas.
Hell, they probably won’t even notice if you don’t visit.
That hurts.
It hurts that your efforts to overcome your grief, sadness and anger are often for nothing. It takes a superhuman effort to ‘keep it going”.

Superhuman effort to keep your needs under wraps.

We only try to ‘carry on’ for our own benefit. It’s not selfish, it’s self-protection. We use the practicalities of resolving issues to paper over the cracks of the situation.

It’s out of control. Often you feel out of control. You desperately hold on to everything you hold dear. Your routines and schedules. Your little habits. The things you did together.

The visit comes around and you fit it in to your routine. You have a new routine every week it seems. Your FTD life, albeit changed now that you deal with it outside your house, continues.

If you still work, you focus on that during the times when you’re not FTD’ing. It’s a welcome distraction. Anything so you don’t have to think about what you did. What’s happening in your life.

People marvel at your ability to cope. But it’s all a sham. Another superhuman effort to disguise the fact that inside you are breaking up.

The one person who would help you through such difficult times is the very cause of your anguish. But they can’t help you.

It’s like watching them drowning in sight of the shore, but your feet are in encased in concrete and you cannot run into the ocean to save them. The ocean of FTD is unrelenting. Its tide washes over everything, scooping up your life until it becomes flotsam and jetsam scattered over the sand of time.

Visiting can either be a relief – you are reassured that they are being taken care of physically so that you can share emotions (which they no longer have).Or it can be a trial of frustration and sadness because they no longer acknowledge your caring and love. Sometimes it’s both.

So it’s tempting at times not to go. Just not to go. The physical pain caused by the emotional anguish can just be too much. But then, the guilt comes. Guilt is a powerful soldier of the FTD General. It will follow you around, sit on your shoulder, peck at your head. Guilt is good at steering you back to what you don’t want to do.

But you do want to do it.

But then you don’t.

Yes, you do – oh wait, it hurts.

Visiting is such a dichotomy. You’re damned if you do and you’re damned if you don’t. I can’t tell you not to feel guilty if you don’t want to go. Sometimes you just feel like staying home and being ‘normal’. Relaxing and not doing anything in particular. But there goes that guilt again. “You shouldn’t be doing that! Not when your loved one is suffering so.”

The suffering is yours too. They don’t know they’re suffering. In a place with good care, their needs are being met. They don’t really have ‘wants’ anymore, just needs. And that is one of the things that is so hard to understand.  They don’t ‘want’ anything. They don’t ‘have’ anything. They don’t want their own stuff. They don’t ‘want’ their other life. They don’t ‘want’ you.

They don’t ‘miss’ anything.

And even though you know they are not doing that by choice, it still hurts.

Visits are overrated, I think.driftwood

FTD – Can You Feel It?

FTD – Can You Feel It?

indiana04

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.

Firefly1

FTD – bringing you the ghosts of Christmases Past.

AChristmasCarol05

Christmas Past……..

It was always a big deal in our house. Both my husband and I had great memories of childhood Christmases. We tried to do the same for our own children. I think we did a pretty good job too.  They have wonderful memories of our traditions.

Those little things that every family has and does that seem peculiar to other people. Foods, gifts, the timing of everything – different for every family but alike in its very uniqueness.

Before FTD, Christmas was a joyous occasion. We are not a religious family, but rather we enjoy the spirituality of our togetherness. We always made every effort to be together on that special day. Even when we moved out of state, our boys drove 3 hours one Christmas morning so that we could carry on our tradition. They have flown in on Christmas morning and flown out the following morning.

Even when our sons had families of their own, we somehow managed to incorporate the other families into our usual schedule and us into theirs. We embraced celebrating on Christmas Eve and Christmas Day. We continued our “Boxing Day” sports viewing and re-celebrating.

We never thought of spending it with anyone else or in any other way. We watched “Love Actually” & sang “Do They Know Its Christmas?”

xmas_saguaro

But when the bastard disease came along, all that changed. It took a couple of years, but eventually we had to switch to non-alcoholic beer and wine and re-time some events to accommodate decreasing insight into what was happening.

To him. To all of us.

Christmas Present as we knew it was over.

He moved into residential care on December 9th, after 3 weeks in a psychiatric unit for evaluation. Our big family Christmas was not to be. We had thought it may be our last when we could all be together and had planned for family to fly in from two other states.

But it was not to be. We took it in turns to visit him at the Care Center, so that he would not be overwhelmed.

He had no idea it was Christmas. Not a clue. Just another day that the bastard disease had ripped from his mind.

We carried on our traditions of course. Cooked, ate, drank. Played board games, went for walks, went to the pub. Kept a stiff upper lip and soldiered on.

It felt weird without him.

I felt like “when he finds out he will be really pissed off”.

We were cheating somehow. He was around but not with us for the first time in thirty-five years. And he didn’t even know.

Last Christmas was the first one when he was no longer with us in body or spirit. So another weird one. We kept everything going for our grandchildren. But our spirits were deflated. Now he couldn’t even be pissed off for missing out on the festivities.

We didn’t really know what to do actually. We spent it quietly at home. Nothing joyous about it.

Christmas was always my favourite holiday. Our favourite holiday.  In England , it sometimes goes on for two weeks.

Now, even though I still love the spirit of the season, something is missing. Love actually 2

Holiday from FTD? Not Bloody Likely! Top Ten Tips for Handling the Holidays

pumpkinsThanksgiving, Hanukkah, Christmas, New Year,  Kwanzaa. Whatever your choice of end-of-year festivity, you may have your work cut out to retain your sanity.

It’s that time of year. For those of us who are deeply entrenched in FTD, it’s the beginning of a season fraught with even more stress that usual.

You have managed to get through the last twelve months of attending to your loved one’s every need and whim. He or she may have deteriorated significantly during that time. There will have been new ‘phases’ every week month or even daily.It’s a lot to deal with.

And now, you’re expected to deal with that and all the other things your family want you to do. The usual.

The usual traveling, cooking, shopping. Wrapping, eating drinking.

Of course, your FTD’er probably doesn’t care about any of that. To him or her , it’s just another day.

You so desperately want to do the things you usually do. The family traditions. The foods you eat, the gifts you give, the places you visit.

Of course, things may be so significantly different now that some of these things are impossible. Maybe they can’t or won’t eat their once-favorite meat, side dish or gravy. Maybe all they want is dessert.

Maybe they want cereal. At every meal.

Traveling may now be impossible. Shopping will require  small army of sitters to watch over your loved one while you go out.

Here’s the biggest tip of all:

Don’t do it.

I’m not saying don’t have Christmas or Thanksgiving or Hanukkah.

I’m just saying forget any ideas you may have about making the holiday like it’s always been. The minute you accept that it will be different, it will get so much easier.

  • Traveling at peak times will be almost impossible if your loved one is anywhere near the middle stages of the disease process. Truculent – (there’s a nice old-fashioned word!)  doesn’t even begin to describe how stressful it will be at an airport, bus station or in your vehicle. Don’t do it.
  • Having large, noisy family gatherings at your house isn’t a good idea either. Being unable to follow conversations, or join in the fun will only lead to frustration for all. Don’t do it.
  • Short visits to friends or family may be ok, as long as you go to them and can choose to leave whenever your loved one gets fidgety.
  • If you have a small family group over at your house, be sure to encourage a nap time for your FTD’er and provide a quiet space they can go to escape.
  • When you serve food, just give them what you know they will eat.
  • Your loved one probably won’t get the “Holiday spirit” idea. It’s just another day to them.
  • Try to keep the routine as unchanged as possible. Fit visits to your place of worship into their usual schedule. Carry on with walks or other forms of exercise that they normally do.
  • Buying expensive gifts for your loved one probably won’t be appreciated or recognized. Go for practical.
  • If you want to get in the spirit and go gift shopping or out with friends, arrange a reliable sitter and go for it.
  • You deserve a break. Don’t turn down invitations to go solo.

And, as always – expect the unexpected. A new phase can start any minute. But don’t live in dread of it. Embrace your family and friends with as much joy as you can. Enjoy the time with your spouse/partner/friend. Make the most of every minute.

As I always say, love, love, love.

The holidays are about love, whatever your choice of festivity.

Give thanks that  you are together for one more year.  holiday image 1

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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