FTD Priorities and Perspective.

Priorities and Perspective

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

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

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

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

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

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

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

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

Priorities

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

Priorities2

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

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

The pig is totally committed.

You are the pig.

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

Be the pig. Oink! Oink!

pig bacon chicken egg

Touch

 

Fingers touch

“Touch has a memory.

 O say, love, say,

What can I do to kill it

    and be free?”

– John Keats

Touch is one of the earliest sensations that we experience.

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

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

 I like to think we even feel love.

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

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

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

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

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

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

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

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

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

 

 

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

 

 

 

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

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

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

I could never tolerate that.

 

Frontotemporal resourcefulness – get crafty!

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

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

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

Guru

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

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

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

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

Love treeUnfortunately, unrequited love is harder to handle.

TEN IDEAS FOR NOT GOING AROUND THE BEND YOURSELF

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

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

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

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

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

quilled hearts

 

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