Halt! Who Goes There? Friend or Foe? Time to Find Out! Frontotemporal Degeneration Time.

Sometimes, I get a little panic attack about the places my husband went to after he left our house for the last time.

My chest gets a little tight and I start thinking about the things he and I went through.

Still.  Even a year after his death, I still get anxious about the places I “sent”him to.

Time flies.

But the memories don’t. Good and not so good. They don’t fly. Sometimes it’s hard to remember the good. The not so good were the most recent in time. The good times (and there were many) are further back.

My brain is still ticking over about how he ended up in some of those places. About the other people there. Thirty years older than him, in wheelchairs and diapers with their heads lolling as they dozed. There was never enough time to find ‘the right place’ because the hospital was ready to discharge him and he had to go.

Time. We ran out of time. There wasn’t enough of it to do what we wanted to do, say what we wanted to say, be who we wanted to be.

Fight or flight.

Fight. I did plenty of that. I railed on and on about how unfair it was. About how he was treated in different places. How stupid people are.

I was stalling of course. Making a noise about anything to be heard. To get people to listen how angry I was. How dare they side with time! Helping it to steal away my husband with its partner, FTD.

Fighting until we finally found a place that wanted to understand him. People who wanted to spend time with him.

Flight. When I wanted to run away. When I wished it was all over.

And then suddenly – it was.

Bzzzz! Time’s up. That’s the end of the game. You lost. Thanks for playing.

Suddenly? How could it be suddenly after five years? We knew for five years. But it was still ‘suddenly’. In seven days he was gone completely. Seven days. After five years it was ’suddenly’ all over.

October 30th marks thirty-seven years since I walked down the aisle with my 21-year old groom. Today is the second time I have  been without him for it. Last year, he had died six weeks earlier. The year before, he had no idea of the day, date or time. But we were together. It was three weeks before he was admitted for his first psychiatric evaluation due to combative behaviors. He never came home again after that.

I share this with you to illustrate that time really has no meaning. Thirty-seven years. Thirteen thousand, four hundred and ninety-six days. But it is what was contained in those days, hours and minutes that we shared that is important. Not the time itself. The love, the laughs, the frustration, the tears, the bickering. The kids, the in-laws. The thrills and tragedies. The highs and lows that everyone in a relationship has.

For a while, the most important time was the last two years. The highs and lows were so distinctive. It is hard to get those times into perspective. The FTD time was the shortest part of our lives together but also the most significant. The bastard disease really did a number on us. But we held strong. Even though time rushed forward like a roller coaster.

Time is relentless, but meaningless. Time is just a concept. It doesn’t actually exist you see. So maybe that’s why I still get my little anxious episodes. Thinking of how I could do it better. Only there won’t be another chance.

Being the pragmatist that I am, I am still thinking of ways it might have been different. I hate that I couldn’t fix it. Still can’t accept that time beat us before I could come up with a solution. Even one year on.

In FTD, time doesn’t really exist. For you or them. No-one knows how long it will last. No-one knows when it will get worse. Every day can be different. What was right one day won’t be right the next. Food, schedules, clothes, speech, abilities in general.

So, living in the world of FTD is like living in one of those movie scenes that you see. The ones where the character in the foreground is moving in slow motion but everything in the background is moving fast.

How can time go slow and fast at the same time? I’m not sure. Maybe it’s to do with the fact that is just a concept. Not a tangible thing.

In very basic terms, time in FTD is the slow destruction of brain cells. On the outside, it means that someone you love is disappearing a few cells at a time. With the cells, time and FTD steal life, love, dreams.

So is time a friend or foe?

It is a foe when it partners with a degenerative disease and eats away at everything. Together time and FTD are a fearsome duo.

It is a friend when it gives you moments you will always remember.

A time-out from the horrors of your FTD life.

It is a friend when a cherished moment passes slowly. Sharing an ice cream, a favorite song, a new grandchild.

Even FTD can’t take that away. Ha!

Related articles

• Frontotemporal Disease-Little-known brain disease rips apart lives of victim, loved ones (thehandiestone.typepad.com)
• Learning to Love and Live When Life Gets Hard (tinybuddha.com)

Eight things you can do when your spouse has FTD

When you get to the end of your rope, tie a knot in it and hang on – Franklin D. Roosevelt

You will have to make some changes in your life if you are a caregiver of a person with FTD. It’s no good fighting it. Just has to happen. You can try to cling on to the vestiges of your old life and your old husband/wife. But in the end, you are the one in charge. You are the one everyone looks to for answers. You will question your own judgement and decisions. Other people may do that too. That’s something else you’ll have to handle. It’s ok. It’s their problem not yours.

1. Don’t sweat the small stuff

Yes, I know this is a cliché, but it’s so true. You will realize as the illness progresses that your life is so different now. There’s no going back. It will never be the same again. Corny sayings like “cherish every moment” are familiar for a good reason. Trying to maintain the status quo will be impossible and it will drive you nuts if you try and do it. This means:

♥  The things that your FTD’er used to be in charge of are now your responsibility – banking, paying bills, clearing the yard, getting the car serviced, whatever.

♥   To be able to do all of that and all the things you did before as well,  something will have to give. The small stuff – being too houseproud or having a set schedule. Needs to go. Structure is good for FTD but it has to be flexible structure (I know – a contradiction in terms!)

So, flexibility is the word of the day, week, month, year. Things may change on a daily basis at certain times. It’s just not worth your sanity to rail against it. Really. It’s not. Just go with the flow.

If the dishes don’t get washed tonight because your beloved won’t go to bed/get a shower/just wants an argument, leave them until the morning. They’ll still be there. At least you won’t have been tearing your hair out trying to get everything done. The world won’t end because a few dishes didn’t get washed or you didn’t tidy your yard. Put things into perspective. One day you will think your world has ended for a real reason.

2. Stop fighting the inevitable

Are they refusing to get in the car when you absolutely have to go somewhere? Are they changing their clothes three times while you are trying to get you both out the door so that you can get to Day Care/work on time? Of course they are!

Do they refuse the food you’ve slaved over cooking and only want to eat Cheerios? Then give them Cheerios. Or chocolate or cookies.  Love and cookies mean the same thing to them now. Accept it.

It’s not like you can spoil them. They’re not a child. It’s just so much easier to give them/do what they want than to try and fight it. They are not going to learn that if they have a tantrum they’ll get their own way. They can’t learn anything. They deserve what they want  – they’re the ones with the terminal illness remember?

3.  Accept help from as many avenues as possible

 You can’t do it all. It’s not physically or mentally possible. If someone wants to cook you two a dinner let them. If someone wants to come and sit while you go out, let them. It may go against the grain (it did for me) but do it anyway. If someone tells you “I wish there was something I could do” tell them there is. Make a freezer meal, collect your dry cleaning, pick up something from the store, wash your dog. Anything that takes time that you don’t have. Because just spending time repeating, reiterating, having do-overs, is exhausting. Speak up. People will be willing to do more than you think. Just ask them. They can always say no. You’ll learn who your true friends are.

4.  Spoil yourself

     Go to the gym, spa, nail salon, hairdressers, football/baseball game. Go for a walk, get a hot stone massage. Take time out. You will burn out really quickly if you don’t pace yourself. It’s not spoiling yourself. If your loved one could, he/she would still give you gifts and little treats right? It’s the same thing. Only you’re giving it for him/her. So go for it.

FTD is a marathon, make no mistake. You cannot ‘soldier on’ and still be the support that your FTD’er needs. It’s not selfish. It’s not uncaring. They need you. You can’t help them if you’re exhausted. Don’t be afraid to do something for you.

5.   Laugh

      Weird huh? Laughing at a terminal illness? Yes. People do it all the time. Don’t let the bastard disease win ALL the time. My husband used to laugh uncontrollably at “Wipeout” in the mid to late stages of his disease. He would never have thought it funny before. Him laughing made me laugh too. See the humor in the ridiculousness of what is happening. Boots in the backyard full of rocks is sad, but quite funny too. Washing your hair with shaving foam is funny too. Not laughing at your loved one, but at the situations that arise.

6.  Accept

     Accept that which you cannot change. You are stronger than you think. I handled things I could never have imagined. Never would have wanted to. But I did it. You can do it too. Sometimes you just don’t have to think too much. In the immortal words of Nike “Just Do It” – whatever it is. One of the reasons we find it hard to accept is because we don’t want it to be true. The stubborn part of your brain refuses to deal with it. It goes on for so long, you think it will never end. So, you fool yourself into thinking that it never will. The human spirit is indefatigable. Hope springs eternal. If there is no end, then you don’t have to accept it. But there is an end. It will be here before you know it. Acceptance will help you deal. Acceptance will help you control what is happening. You will be calmer. You will be more articulate in speaking up for your loved one. You can fight in different ways. But you have to accept.

7. Give yourself permission

…to be sad, angry, frustrated, tearful, sarcastic, funny, unkind, exhausted.

It’s all good.

8.  Love

Love cannot be denied. Even if you have lost your love for your partner in FTD, you have to love yourself enough to know when you have done enough. Be honest. If you don’t love them enough to do it – then don’t. Find another way. Or accept it. You can love someone in a human, caring way even if you don’t love them as your husband/wife anymore. But it’s a big ask of anyone.

If you love your partner as much or more than you did before FTD, you will find that love will sustain you through the darkest of times. It won’t seem like it at the time. But it will. You will have to deal with horrible things, but strength will come from your love. From knowing that they would do it for you if things were reversed. You will feel love from them even when they can’t tell you anymore, right up until the end.

You will feel it.

The Love.

Oh and cookies………

Related articles

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• Dementia: the journey of caring continues (swapnawrites.wordpress.com)
• Giving Family Caregivers the Respect and Support They Deserve (aarp.org)
• Behavioral and Psychological Symptoms of Dementia (caregivertwopointoh.wordpress.com)
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Beware of Caregiver Breakdown: Three Warning Signs and Three Soothing Actions

Good advice……

Dementia Journey by Deborah Shouse

My stomach hurt most of the time. As I dashed around the house, getting ready to go see Mom in the Memory Care Unit, I frequently bumped into furniture. I found myself drifting away during meetings and unable to concentrate when I sat at the computer to write. And even though I had wonderful, supportive friends, I often felt an aching loneliness. Later, I learned these were normal symptoms of caregiver’s fatigue.

I asked my friend Linda Moore, psychologist, community leader and author of the newly released book, “What’s Wrong with Me?” to tell me more about recognizing and managing such exhaustion.  Here are some of her insights.

Three Areas Where Stress Screeches You to a Halt

 

Physical

“Your body is the early warning system,” Linda says. “But most people try to ignore the on-going tiredness, low energy, muscle spasms, unfamiliar aches and pains, and GI issues.”

Emotional

Often…

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PAIN Part II – Yours. Holy Nemesis Batman, it’s FTD!

Whether you’ve loved someone for forty years or only for four, going through the hell of FTD or indeed any other terminal disease in painful. For everyone concerned.

The pain of watching the other half of you disappear is almost indescribable. Although many people with far more eloquence than me have tried and done a pretty good job of it.

The pain sits on your chest almost from the moment you hear those words –

“Well, it could be Frontotemporal Degeneration or early-onset Alzheimer’s Disease”

It sits on your chest and in your heart 24/7/365. It never leaves. Even when your loved one leaves, the pain doesn’t. The pain is like a new part of your body. It even becomes somewhat comfortable after a while. You just get used to it being there. It’s like a guilty secret. People may think you should probably be ‘getting’ over it’ but you know you never will, even if you pretend to be doing so.

To hell with them.

Let them try getting over it. There’s no getting over it. It is part of you, part of your life.

I recently read in a blog I follow that living with someone who has FTD is like “leading a double life” (http://wp.me/p3EOZl-kW). And she’s right. You put one part of your life to the side during the times you have to be “the caregiver”. Then you switch roles and become someone else to be mother, sister, daughter, friend , coworker, whatever.

This constant chopping and changing is confusing. You lose sight of your life. Because it isn’t how you imagined it would be. It isn’t how you wanted it to be. But it is what it is.

Painful.

Physically, mentally, emotionally.

Painful.

Anger is painful. That anger that comes from being unable to fix things. I am a fixer. I am a nurse, a mother, a grandmother. I fix things. I make them go away. It makes me upset, frustrated, angry when I can’t do that.

So pain, that all-encompassing feeling,  takes over. And you feel pain about being in pain. You have to work really hard at letting love surface. The love is always there of course, but it is submerged under the bastard disease.

There is a constant battle between good and evil. Even when the good guy (love) wins, the baddie, FTD is always waiting in the wings to knock it back down again. You can’t stop it taking your loved one but you can stop it taking you.

Because true love endures of course. Even through the pain and the battles. It doesn’t always feel that way, but it does.

Honestly.

To quote Winston Churchill – “If you’re going through hell, keep going”

 

Alzheimer’s: It’s Not Contagious

Some interesting perspectives on how a moment of joy can bring so much to someone who is detached from reality.

The Long and Winding Road...

I saw a picture a few days ago, and it’s been on my mind ever since. The image was that of an older woman sitting alone on a bench looking off into the distance. The caption said, “Alzheimer’s isn’t contagious.”

As advocates, we place a great deal of emphasis on funding for research – we think a lot about the future – hopefully one without Alzheimer’s. And all of that is tremendously important. However, the image of that lonely woman reminds us we must also focus on those living with the disease today.

Lonely Days

How many dementia patients sit alone in a facility, day after day, month after month, and year after year? One might argue that technically they aren’t alone; there are people around, the hustle and bustle of daily goings on, shower time, mealtime, and an occasional balloon volleyball game.

Don’t fool yourself –…

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PAIN Part I – Theirs

“Pain is inevitable, but  misery is optional. We cannot avoid pain, but we can avoid joy” – Tim Hansel.

In nursing, we have it drummed into us from Day One.

“Pain is what the patient says it is”

It’s a quasi-quote from a very old piece of work from 1968, written by a nurse called Margo McCaffery. It was quite revolutionary in its time.

What Ms. McCaffery so eloquently advised was what nurses have been doing for hundreds of years. Listening. Imagine that! Actually listening to what sick people are telling us. But what if “the patient” can’t tell you what it is? We have pain scales with number grading. We have scales for children with pictures instead of numbers.

Pain in your loved one with FTD is often quite the dilemma. Particularly when they have aphasia and can’t tell you what’s going on. When my husband’s wisdom tooth started to become painful in Year Four,  he would point at the back of his wide-open mouth and grunt. I took him to our regular dentist. That in itself was interesting. They had not seen him since his FTD had become so advanced, more than six months before. They were very accommodating and treated him with great respect.

Our dentist referred him to a surgeon and together we all agreed that the offending impacted wisdom tooth and adjacent molar would have to come out to alleviate the pain.

Long story short, the days and weeks after the surgery was one of the most difficult times throughout the whole journey through FTD. Being unable to understand the instructions given after the surgery, my husband tried to eat and drink everything in sight then complained about how painful it was on the side where the teeth had been extracted. I explained over and over that he needed to eat on the other side of his mouth but of course, he was unable to understand or process those instructions.

Dressing changes were hit and miss, depending on his mood. He accepted the pain medication but once it kicked in, he would eat on that side and start the whole cycle again. Ultimately he developed something called a ‘dry socket’ – a hole without a blood clot over the extracted tooth area.

   Painful in the extreme. If you’ve ever had one, you’ll know what I mean. Imagine being in pain but thinking that no-one’s doing anything about it. No-one will help you. It hurts like hell. But the medication you took ten minutes ago isn’t working yet.

But wait, you don’t remember that you had some ten minutes ago. Now you’re mad. Mad at the person who is withholding the one thing that helps get rid of the pain. You’re mad at them. Why won’t they give it to you?

Agitation and belligerence ensue. What’s happening? All you know is your mouth hurts. You forget it hurts and then you drink a cold drink or chew your food on that side. Just like you always have. Only now it hurts. All the time.

You just want to yell and scream at the one person who can make it better. But they’re choosing not to. Why?

Why won’t someone make the pain go away?

The misery is not optional. Joy can be avoided by the person with FTD.

Pain must be endured. We can give medications as advised but cannot explain why we cannot give them when we cannot. Well, you can explain but your FTD’er won’t understand. You’re just being difficult – right?

I can’t give you an answer unfortunately. Pain is what we all say it is to us.

You, me, your loved one with FTD.

Your pain, of course, is very different. It can’t be helped by analgesics. In Part II, we will look at the pain you have, are having, and will experience throughout the course of your journey.

The pain of having your love tested to the point of physical sensation.

Love is pain too.

Related articles

• Pages of Pain (lynnbowerdementia.wordpress.com)
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Is there anybody there? OH YES!!

In the last few weeks, I have been looking around and finding other blogs and writings about FTD.  I was amazed at how many of you are out there! And excited too. It means that awareness is on the increase. It means that more people are shouting about it.

I have been moved to tears by more than one account of the daily life of a caregiver for a loved one with FTD. I am amazed by the strength, the courage and the tenacity with which these people hang on to the fragments of  someone who is so dear to them.

I want to reassure, hug, make it all right. But of course I can’t.

I want to tell them it will all be ok, that their sacrifice will be worth it in the end. But I can’t.

In the year that has passed since the bastard disease stole away the last vestiges of my husband, I have become aware of a growing movement. Dementia is in. The ‘aging population’ as we are known – Boomers, the Sandwich generation, call us what you will, we know it’s around. We don’t want it.

We look for ways to avoid it. Diet, exercises, brain games. You name it. We will go the ends of the earth to avoid it. Alzheimer’s Disease is becoming the plague of the 21st century. But there are other plagues that chip away at the brain. Frontotemporal Lobe Degeneration, Pick’s Disease, Primary Progressive Aphasia, Behavioral Variant FTD. A positive myriad of acronyms and initials.

And that’s before we even start on the physical conditions – cancers, other neurological conditions – Parkinson’s, Motor Neuron Disease, diabetes, obesity. The list goes on and on. No single thing is more important than another. Until it happens to you. Then it becomes your life. Your whole world. The new world replaces the old one.

The world of the caregiver – and I can only speak from watching people through my work and my own experience – the world of the caregiver of someone with FTD is strange. Other caregivers may compare it to their own life. And I’m not saying it’s worse or better. I’m saying that it’s unique, mainly because of the young age of the affected person. FTD and Early-onset ALzheimer’s Disease affects people as young as thirty years old.

It’s hard to advocate and lobby for a single group of people. Everyone thinks their cause is the most deserving.

Because they are closer to it.

Because it touches them every day.

You might think that would make them self-serving. Uncaring of the plight of others. You would be wrong. Because they all know how it is for anyone who cares for another human 24 hours a day, 365 days a year. They are kindred spirits.

I am truly humbled by what is going on out there. I took care of my husband for three years before the kindness of others allowed me to spend time with him, loving him, being his wife instead of his caregiver.

People with FTD need people who understand and love them. I have been reminded of this during my excursions into the blogging world.

Raising awareness is another tool we can use to fight the bastard disease. The writings of caregivers give us insight into the progression of the disease. Not just the disease, but the love that goes into every day.

The love that overcomes the frustration, the anger, the resentment. Right now, it can’t conquer the disease, but it will not be for lack of trying.

 articles

• Help for Caregivers in the Form of an iPhone App (homeinsteadetobicoke-blog.com)
• Dementia striking 30 year olds (Video) (examiner.com)
• Pages of Pain (lynnbowerdementia.wordpress.com)

Question. FTD/AD – What’s the Difference? Answer. I Can’t Remember. Behave yourself!

This is not a medical journal. Just a caregiver’s view. The symptoms of Alzheimer’s Disease are well-known and documented. Loss of memory, loss of functional abilities etc. etc. Too many to list. Generally speaking, unless of the ‘early-onset’ variety, true AD strikes mainly after age sixty five. There may be symptoms or warning signs before that of course.

Frontotemporal Degeneration can be identified by several unique factors, despite the fact that there are many variants of the condition. Symptoms of FTD can become apparent as early as age thirty-five. There is often no impairment of memory until quite late in the disease. The degeneration of the frontal lobe cells of the brain brings changes in all the functions associated with left-sided brain activity. Language, speech, insight, empathy, learning. Depending on which variant is present, one or more functions will decline more rapidly. In a group of five patients, each could present with  different set of symptoms but all have FTD. (For a more comprehensive description of variants and symptoms, check out www.theaftd.org)

Ok, so that’s the clinical stuff. What you really want to know is this. What does it mean to you as the spouse/child/partner/friend of one afflicted by this condition – this thing called FTD?

Well, speaking from my own experience, I can tell you that everyone’s experience will be different. The devil is in the detail so to speak. My husband began with word-finding difficulties when he was fifty-four.. This prompted a visit to the neurologist to check for physical abnormalities like stroke or tumor. Someone else I know noticed strange, illogical thought processes in her forty-five year old husband. Difficulties at work. Often in the early stages, the doctors can’t even decide between Alzheimer’s or other dementia. Sometimes the line is so fine it’s indistinguishable. At first. As time goes by the differences become very obvious.

You may see completely uncharacteristic behavior – overtly sexual, socially inappropriate, repetitive behavior or a combination of all those things. Compulsive eating. Compulsive gambling. You may be astounded at characteristics never seen before that suddenly appear in your loved one. Behavior unprecedented in your life so far.

Funnily enough, once a condition has been identified, the ones closest to them can then look back over time and identify various things which were a little ‘off’ or inexplicable, going back several years. So the disease was present, just not apparent. In my husband’s case, there were signs as many as five years back from our initial consultation with a neurologist.

Even when you have a diagnosis, there is little to be done. Many people try therapies intended for other cognitive interruptions – speech therapy, medications to relieve the symptoms of Alzheimer’s Disease or depression, or anxiety. You try and control as much as you can and fend off the bastard disease with everything you can muster. But at this point in time, there is no specific treatment or cure for any kind of progressive dementia.

There is some great research work going on. It may be that we are close to a medication treatment for relief of symptoms. But the inexorable breakdown of brain cells continues.

The differences between Alzheimer’s and FTD are, as you can see, many and varied.

Because of the younger age of those afflicted by FTD, society in general is just not prepared to deal with them. Residential Care, Adult Day Care – they’re getting better at it. But your local supermarket, bank or YMCA will have a hard time forgiving your loved one for public urination or shoplifting. If he/she is forty-five years old, that behavior is unforgivable to those establishments. The disappearance of social filters and inhibitions can bring many problems.

You can carry a card explaining that your companion has a brain disorder, but the manager of the grocery store has his other customers to think of – right? Not to mention his profits.

The mothers at the park will baulk at your partner whipping it out and peeing in the bushes at random. The credit card company won’t care if your husband racks up $10,000 in internet porn bills.

Your mortgage company won’t care if your spouse decides to put your house up for sale. The lawyers won’t care if your marriage is deemed irretrievable by your husband or wife and they divorce you.

I have witnessed all these things in my peers within the FTD world. Until you become aware of a diagnosis, you may be living in a world where nothing makes sense. Your partner can do all the things that a consenting adult is legally allowed to do. Drive, watch porn, , summon prostitutes to your home, drink alcohol – whatever they choose. But when they have FTD,  it’s the equivalent of giving your twelve year old all those privileges. Privilege without responsibility is a dangerous thing.

You can chastise and correct a twelve year old. They may even learn from their mistakes (hopefully!) Not so with your FTD’er. The disease helps them unlearn things and takes away the ability to change behavior.

In Alzheimer’s Disease, the person is older; seems more protected by their age and family somehow. Our expectations are different. Social propriety remains mostly intact until later in the disease process.  They have already relinquished a few of those things that we take for granted. The older adult may not expect to go out to a bar, get drunk and live it up with his friends every weekend. If they still live alone, they may already rely on family or friends to help. Somehow it seems more acceptable to observe and supervise them. For your husband of thirty-five years, supervision and observation seem wrong.

There comes a point when you have to take charge. That seems wrong too. These days, the presence of Alzheimer’s Disease is an accepted part of our aging society. We anticipate that our parent may become senile and/or demented and plan accordingly. We all know someone who has a parent or grandparent with Alzheimer’s. We all hope that it won’t land on us. It comes as somewhat of a shock when it’s your partner or spouse.  Someone the same age as you. The father or mother of your children.

To society at large, dementia is dementia is dementia. The person is “not right in the head”.  The world (well, most of it) sympathizes but does not differentiate. They don’t understand forty year olds with cognitive loss. They don’t really want to. It makes them uncomfortable.

It makes you uncomfortable too.

Your love will be tested to the limit. Your partner may try to cut you out of their life completely. They may sell off everything you have together. They might buy six vintage cars. They may buy dogs, tools, food. They may spend money that neither of you have. They may go into your neighbor’s houses uninvited. They may not let you in their (your) house. They may bring strangers (whom they call their friends) into your house.

They may divorce you. I know one person who moved back in to take care of their spouse until they died, even after they were divorced. The FTD initiated the divorce. The unrequited love fought it with all they had.

Until you have that magic piece of paper- the General Power of Attorney – you are powerless to stop them. The POA is your ticket to controlling what happens to them – and you. Here in Arizona, there is a requirement for a separate Mental Health Power of Attorney. Even then, when you need to invoke it, you still have to have a physician attest that your loved one no longer has the capacity to make their own decisions.

Get it signed up now. Before it’s too late and you have to apply for Guardianship. That takes a long time. More time than you may have to save what is yours. And it takes money, more than you may have.

This also applies to the families of Alzheimer’s patients. However, the big difference here is that there may be a greater chance that an older person actually has their wishes documented already. People seem to think that you don’t need a will at age forty-five.

Believe me, you do.

So get one.

Also grab whatever help you are offered with both hands. Don’t let yourself be fooled by your history with your FTD’er. There’s no going back. You have loved and respected them for 20, 30, 40 years. You still do. But recognize that the behavior is not reversible. You will need a thick skin and a tough heart. To do the best for them, you may need to do some of the worst things you have ever done. You will need a sense of humor that Jay Leno would envy.

There will be funny, heartfelt moments in between the practicalities of caregiving. Eat them up.

Your seventy-five year old mother with Alzheimer’s and your fifty year old wife with FTD have very different needs, age notwithstanding.

Your wife with FTD may not know she loves you anymore. She may kick you out in a fit of rage. She has no empathy remember? The bastard disease stole it away.

She may sell off those valuable baseball cards you have been collecting for thirty years, even though she knew (before) that they are important to you. She doesn’t know what’s important anymore. Those things have fallen through the holes in her brain. It’s not that she doesn’t remember, its that the bastard disease has covered them up so she can’t see them. Buried them in the holes. She won’t care either, that you are upset, by the way.

FTD and empathy are not friends.

In FTD, significance is non-existent. Your elderly mother with Alzheimer’s just doesn’t remember.

You love them both, just in different ways. Just like the differences between their diseases.

 

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• Frontotemporal Disease-Little-known brain disease rips apart lives of victim, loved ones (thehandiestone.typepad.com)

Frontotemporal Dementia: It’s Not You

You – you multifaceted thing you!

You, as a caregiver, are the sun, the moon, the stars to your partner, spouse or friend. You become their lifeline. Their link to all that is real. You are the person who feeds them, cleans them, loves them.

In the depths of middle to late stage FTD, you may wonder where “You” have gone. You may wonder what happened to that man or woman who was just blithely getting on with their life. Perhaps growing older with your life partner or friend. Minding your own business.

The slap in the face that comes with FTD is in slow motion. It happens insidiously over time.  It happens when you’re not looking. You’re so busy just dealing with the day-to-day, it sneaks up on you.

• You are now your spouse’s parent, supervisor, antagonist extraordinaire
• You are the housekeeper, cook and entertainer
• You are the gardener, handyman, chauffeur.
• You are the accountant, budgeter, banker
• You have needs that come second, or even third – to just about everything

If you have young children, that is some balancing act. Even if you don’t everyone needs something from you – all the time. Or so it seems. You have no support from your spouse, so prioritizing is even more vital than before.

So,  You.

You still matter. You have to carve out time and energy for You. Everyone will tell you that. You know it’s true. You have spent your life in service of others-being a wife/husband, father, mother, daughter, son, sister, brother, coworker employee and everything else you are. There will be associated guilt with letting go. But your own well-being is at stake here.

You will have to continue after it’s all over. Today is the best day there is going to be. The deterioration rolls relentlessly on. FTD will leave you behind.The bastard disease will take everything you have and then some.

It will require all of your superhuman powers (you are invincible -right?) to hold on to everything that is You.

There is no ‘I’ in ‘You’ – ha! How ironic. You have to become ‘I”. Even when you have been ‘We” for a very long time. You were still there underneath ‘We’.

Just hibernating a little.

Try to begin this process before the end of one chapter of your life and the beginning of another. Transitioning at a natural change, such as your loved one going to Adult Day Care or moving out of your home into a facility can help.  I joined a gym, ventured a little further from home, visited family. Of course, if you are caregiving at home, you will need to arrange to for someone to cover for you while you are gone.

Do not make the mistake of sacrificing precious time that will save your sanity by trying to do it all. It won’t be appreciated and you will still feel crappy.

Every caregiver I have ever known, including myself, has gone through that guilt and martyrdom of leaving their loved one home while they went out or away to do something fun.

The first time is the worst. At the risk of sounding cruel, your loved one will probably not even care after the first ten minutes. Especially if you leave them with someone they know well. You love them. People know that.  If they don’t understand why you need time off -to hell with them.You don’t have to explain to anyone.

A friend of my husband’s would come and sit in our house sometimes between the Home Carer leaving and me getting home from work. My husband would go about his day, cleaning and laundry-ing and completely ignore Bob. His social skills were so corroded by this point that he never gave a thought to sitting with his friend.

Believe me, martyrdom will bring you no comfort. Do what you need to do. Do something that gives you joy.

A lady in the Support Group I attended was asking the group what they thought about her going away overnight to see a friend. Leaving her husband with a caregiver with whom he was very familiar and liked a lot. She was worried that her husband would not approve. We told her to go on her little trip and deal with any fallout on her return. She said  “But he will be upset that I left”. She was reassured that by the time she got back, he would have already forgotten that she had gone.

She went and the caregiver told her that her husband never even asked where she was. This is a great example of how we overestimate our loved ones’ understanding due to the longevity of our relationship with them.

Please don’t give your FTD’er too much credit for understanding what is going on. Give yourself the credit instead. There is no cost. Only to you if you don’t do it.

Use the credit for an afternoon to yourself. A pedicure. A dinner with friends. A trip to the spa. Or the gym. Or just by yourself having a quiet cup of coffee.

For You.

You will carry on. You will emerge. You are invincible.

Related articles

• Deep Breath. . . (bringingthebattlehome.com)
• So This is What a Day of Freedom Feels Like (mscaregiverdonna.wordpress.com)
• Stress-busting Tips For Caregivers (lifefoneblog.com)

“If Music Be the Food of Love, Play On…” Music and Frontotemporal Degeneration

Shakespeare had it right. The unrequited love of Duke Orsino in Twelfth Night  could easily be compared to what eventually becomes one-sided love in FTD.

Music can have so much meaning in FTD.

Songs that evoke memories of happier times can be therapeutic for both the person with FTD and their family and friends.

Often music can help to retain a link with the present for a long time. Patients recovering from a stroke for example, can often sing their words but not speak them. But unlike after a stroke, the aphasia (loss of speech) in FTD is sadly not repairable and will not return. Obviously, any kind of dementia has a different etiology than a stroke, but music can play a large part in the daily activities of someone with FTD.

Music can evoke emotions in your partner or friend with FTD. It’s as if the feelings they had when they first enjoyed the song or piece of music can be resurrected somehow. They may not understand why they feel the way they do, but it’s enough that there is a response. So music can be therapy.

• They may not be able to work an iPod or other mp3 player, but with help they may enjoy just listening to favorite music. Old albums on a record player work too. Going through the motions of putting the record on. Hearing the faint crackles. It all serves as a reminder of what they once loved.
• Music may well have “charms to soothe the savage breast” according to William Congreve in 1670. It can certainly work to calm your frustrated FTD’er. There is evidence to suggest that music has a calming effect. This may be something to do with the brain focusing on listening to the sounds and being distracted from frustrations.
• Music can also have a ‘grounding’ effect on the person with FTD. As if it gives them a temporary link to normality which may now be lacking. Especially in the mid-to late stages. Even when he could no longer speak, my husband would smile and nod knowingly when a familiar tune came into his earpiece.
• Music is also therapeutic for you and other family members. Some pieces will evoke tears, some laughter, some just fond memories of happier times.
• Sharing common memories can remind you of the closeness you once had. Try sharing your iPod – one earpiece each. The songs you danced to when you were younger. The movies that the soundtracks remind you of. It’s all there.

 Holding you together.  Like the soundtrack of your own life.