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

Decisions, frontotemporal decisions……..


DNR2

One of the best things you can do when you first see the symptoms of any cognitive change (or preferably before that)  is to sit down with your loved one and have them write exactly what their wishes are. One piece of paper can save you from a world of hurt down the line.

Your love will be tested enough.

Have the dreaded discussion.  If you don’t, even if you know what they would want, when it gets to the time when they can no longer make those decisions for themselves, there are a million (well a lot anyway) legal and moral hoops to jump through. The hoops are mostly made of ‘red tape’. But not having the right paperwork will seriously inhibit your ability to take care of your loved one’s best interests.

Some of the written information may not be official paperwork. It may be just a handwritten summary of what they would like to happen. But at least you will know. At least you will be armed with their choices, their decisions. And not be forced into making them yourself.

Especially at a time when you feel least able to make them.

Having been a nurse for many years before the onset of my husband’s FTD did not help at all let me tell you. Having medical knowledge just makes you more angry at the morons (I’m sorry, I did think that sometimes) who purport to care for your loved one. Obviously they’re not all morons. Quite the contrary. The people who took care of my husband for the last four months of his life did a far better job than I ever could. They were wonderful. As the old saying goes “You have to kiss a few frogs before you get your prince”

Same principle, applied to caregivers. Unfortunately you don’t always have that much time to kiss the frogs. Or appease the morons. Even being in ‘the system’ did not help me. The minefield of decisions was just as terrifying for me. Even with my inside knowledge.

Often before you find the great place for your loved one to end his/her days, you will endure 101 requests for those vital pieces of paper. For example, before they can be admitted to any kind of facility for psychiatric evaluation you will need at least 3 copies of each. Pretty much every person you speak with will want to see them. Especially the Medical Power of Attorney. I thought it might be helpful to have a glossary of the various terms and paperwork that you will need to give you the power you need (no pun intended).

So here it is…….

Last Will and Testament.

I’m sure that you all know what this means, but I just want to make sure that you understand that this is most definitely NOT the same thing as a Living Will or Advance Directive. The Will is generally about documenting wishes in regard to belongings and property.

Advance Directives  are written instructions that document a person’s wishes in the event that they are unable to make decisions for themselves.

Advance Directives include:

Advance Directive umbrellaPower of Attorney (POA) – this is the document that your loved one signs to say that, in the event of them being incapable of making their own decisions about their life, a designated person (usually the spouse or children or a close friend) has the authority to do so. The Power can be “Durable” –  meaning it  gives the designated family member of friend the power to advocate for the patient, or limited to a specific aspect such as Financial or Healthcare/Medical. In the United States, there may be variances according to State Law. For example, in Arizona, Healthcare (Medical) Power of Attorney must include Mental Health on a separate document. Good to know in relation to dementia.

Even with a signed Mental Health Power of Attorney, I still had to have my husband’s physician sign paperwork to say that he was not competent to make his own decisions before an in-patient psychiatric facility would admit him.

The Durable Power of Attorney gives the authority to make decisions, but does not specify what those decisions should be. Holding Power of Attorney may not give specific rights to a spouse or child if it does not include a Living Will or other Advance Directive. The Medical Power of Attorney and Financial Power of Attorney can be different people. Even if you’re not hugely rich, you need a Will and some Advance Directives, just so everyone knows what to do.

P.O.L.S.T (Physician Orders for Life Sustaining Treatment)

The POLST form is a set of medical orders, similar to a DNR order.  POLST is not an advance directive.  POLST does not substitute for naming a health care agent or durable power of attorney for health care. It results from considered, shared discussions with the doctor, family, spouse, other caregivers, and sometimes the patient to ensure that their medical wishes are clear to all concerned. It takes into account the personal desires of the patient, including religious values, beliefs and goals for their remaining life. This shared decision-making ensures clear and unambiguous care.

POLST  is for seriously ill or frail patients for whom their physicians would not be surprised if they died in the next year. POLST is not for everyone, it is not a Living Will per se. What the POLST does is give direction – doctor’s orders,  to health care providers – EMT’s, paramedics, ER doctors and nurses, in the event that your loved one ends up in an ambulance or the emergency room.

Click here to find forms for your state

Guardianship

If there is no POA – especially for Mental Health, in place at the time a person becomes declared incompetent, you may need to apply to the court to gain the Power of Attorney you need to access your loved one’s funds, healthcare records and make decisions that they are now unable to make. The guardianship process  can be long and drawn out and cost quite a lot. You will need to use a lawyer to help you through the process. Again, there are differences from state to state. When completed, you effectively become the guardian and advocate of your loved one’s interests.

The court will decide if you are fit to do so. So isn’t it better for your loved one to decide first? You can’t assume that it will automatically be conferred on to the spouse or next of kin. If there is no family available, the court will appoint their own Guardian to advocate for the person.

Living Will

Living WillThis is an Advance Directive that specifies a person’s wishes in the event of a catastrophe that causes that person to be unable to make healthcare decisions. This includes a traumatic event – heart attack, stroke, or in our case, a debilitating illness affecting the mind. Even people who are not sick should have one of these. There is less ambiguity when it comes to the various family members agreeing (or often, disagreeing) on for example, a feeding tube, CPR or other life-saving procedures. If everyone knows what you want, there can be no ambiguity. In extreme cases, if it comes down to “pulling the plug” (sorry, that’s a horrible phrase, but one recognized by everyone) – if it is written and signed by the unconscious or incompetent person, then there should be no arguing among the family about whether it should be done or not.

As you move forward into FTD, it will become very clear that your loved one absolutely cannot make financial or medical decisions (or even what they’re eating for lunch today) by themselves. You will have some tough choices to make. You will have to stand your ground and advocate for them. It will be so much easier if they have done it for you.

DNR (Do Not Resuscitate)DNR

The Living Will should specify exactly what, if any, life-saving measures be taken in the events described above. DNR means that the person will be treated only to ensure a comfortable, natural death, without heroic intervention to prolong it.

Life saving/preserving measures include:

Resuscitation (CPR)Resuscitation

This is when the medical staff will attempt to restart  the heart when it has stopped beating (cardiac death). It includes chest compressions (someone rapidly pushing down on the heart firmly through the chest wall), ‘bagging’ – air being pushed into the lungs manually via a mask over the face and probable defibrillation – an electric shock delivered by a device to stimulate the heart back into action. It’s not pretty. And the outcome is not guaranteed.

Even in a hospital setting, with a witnessed event,  the chances of surviving are quite small. If there are more than about three minutes between the cardiac arrest and the start of resuscitation, there is a greater chance of brain death due to lack of oxygen.

Mechanical ventilation

  • A machine that takes over your breathing if you’re unable to do so. This involves the insertion of a plastic tube through the mouth down into the lungs (intubation) You may hear this called an “ET tube”. This is the machine that is referred to when you hear TV reporters and newspapers talk about “Pulling the plug” The ventilator pushes air into the lungs at a prescribed rate and pressure. It is only used when the person is unable to breathe for themselves. While intubated, the person is usually sedated as they are unable to speak and they are often restrained – tied at the wrists –  to counteract the natural instinct to pull out the tube. Some people don’t realize that it is the machine keeping the person alive and not the person themselves. For example, there is a case in the news right now about a thirteen-year old girl who is brain dead, but because her heart is beating, her parents are convinced she is alive. She has no brain activity to tell her heart to beat. The machine is keeping her “alive”.

Nutritional and hydration assistance.

  • Fluids and or food can be infused intravenously or via a tube inserted into the stomach. The tube can be inserted via the nose (NG tube) or through the wall of the abdomen (PEG tube). In FTD, this may be suggested to you when your loved one’s swallowing becomes more difficult and eventually goes away altogether. As the swallow reflex disappears, there is a chance of aspiration – the food or fluid gets inhaled into the lungs instead of being swallowed down the esophagus into the stomach. Obviously, this is not good. The resulting ‘foreign body’ in the lungs can cause an infection – pneumonia. Then you will have another decision to make. Antibiotics or not?

Dialysis

  • This is a process that removes waste from the blood and manages fluid levels if the kidneys no longer function. If your loved one can’t remember or doesn’t want to drink or eat, they may become dehydrated and have some kidney failure. Dialysis involves the permanent insertion of a two-way intravenous catheter. One side for removing the blood and one for putting the clean blood back in. Dialysis takes about 3-4 hours, 3 times a week, attached to the machine that pulls out and pushes back the blood.

I’m not trying to scare anyone, but clearly, all of these procedures and processes require a great deal of forethought. Going through any of them for a person with FTD would be quite horrifying in my mind.

If people ever asked me about my husband’s DNR status, I would always say – “If we resuscitated him what would we be saving him for? More of the same? Worse?

If I’m very honest, I would have to say that my husband would definitely have preferred having a heart attack and being dead to suffering as he did for five years and then being dead anyway.

One other thing I would like to tell you that many people don’t know is to check your loved one’s life insurance policy. I found out that I had been paying premiums on my husband’s policy for two years and there was a premium waiver clause in the case of terminal illness. I only found out because I was looking for another clause – an accelerated death benefit.

The insurance company did refund the premiums I had paid since the time he was diagnosed.  I just had to send them a letter from his neurologist with the diagnosis and prognosis. Interesting that they had denied increasing his death benefit about a year before, due to his diagnosis but never told me about the premium waiver!

The accelerated death benefit can pay you part or the entire death benefit for documented terminal illness ahead of time. Good to know. Worth checking into.

There is also something called a “viatical settlement” in which you can sell part of the anticipated death benefit of the life policy to another company in return for cash, which you may well need now rather than in the future, to help with medical or caring costs.

You may also want to consider organ donation if your loved one is physically fit and healthy. Or think about donating the brain for research which could help to find out more about the bastard disease and find treatment and cure more quickly.

So there it is. Some things to think about. Rather a lot really.  It can seem quite overwhelming. Yu should also be sure to have your own set of Advance Directives, in the event that something happens to you before your loved one.

But do it sooner rather than later. You need to protect yourself and your loved one. No-one likes to think about it . Some people think it’s morbid.

It’s not morbid. It’s loving, caring and sensible.

Love drop

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

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

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.