FTD – Bringing New Horizons

Lounging lady

Since becoming a lady of leisure recently (hah!) I have been tackling some projects around my house. Just small things that I didn’t have time to finish (or the inclination when working 50 hours a week) following the big renovation last year.

One of the things I noticed while painting, sanding and stenciling, was that if I made a small mistake, or got paint somewhere it shouldn’t be (mostly on me), it didn’t matter. Doing a half-assed job really didn’t matter. As long as it looks mainly ok, that’s alright. That’s something new for me. It began while caring for my husband at home. Standards of housework, appearance and status became a poor second to ensuring that my darling hubs had what he needed and was safe and comfortable,

Treading the FTD path brings out things in you that you didn’t know were there, but more importantly it puts things into perspective. When I lost my job, I went through a myriad of emotions, mostly because that place had been one of my sources of support through the FTD years and now it’s no longer available to me. I am banished. But what was eventually revealed to me over the last few weeks is that the job is not who I am, it’s what I did. That’s a little contradictory to what I have preached throughout my nursing career. I used to always say that nursing is not what you do, it’s who you are. The ability to empathize, bear the pain of others and make compassion a daily practice comes from inside. It is who you grew into as an adult, not what you were taught in school. So, although I am a nurse at heart and I have those necessary qualities, the place I demonstrate them is not really important. When the banishment happened, I told everyone – “Don’t worry, I’ll be fine, it’s not the worst thing that’s ever happened to me”.

And that is true – it’s not. FTD trampling over my love and my life was definitely the worst thing that ever happened, and I survived that. I am still here to tell the tale and hopefully, help others to weather the storm that FTD throws at us.

Learning to adapt and compromise is one of the basic tenets of handling FTD. I wrote about acceptance and resilience here, discussing how important you are in this whole equation. This thing has invaded your life and, despite its best attempts, you are more than capable of pushing back. Lately, I have become more involved in local attempts to influence legislation around dementia support. It’s a huge task and it will take many people and longer than any of us would like to influence progress. But I have the luxury now of fighting for others. I can fight FTD on a different front. You are in the trenches, fighting hard to maintain some kind of quality of life for you and your family. That’s hard. Harder than anything you will ever do. That’s why I think I can now afford to be half-assed about stuff. Because my priorities have changed. I know that the stencil on my laundry room floor is not as important as finding my husband a safe place to live when I couldn’t take care of him anymore. I know that if the paint dripped on my patio pavers is cleaned up less-than-perfectly, my life will not fall apart. I know that as lucrative and comfortable my high-flying job was, it was not the definition of me. 

Now, I am more likely to have a pet-friendly sofa, a grandchild-demolished bathroom and days without make up or showers. But it’s because I am calling the shots, not FTD.

My new work involves advocating for others and helping them to navigate the complexities of our funky healthcare system. Not that I know everything about those things of course, but I hope to bring some relief to people struggling to find their way through the FTD  maze. I hope that, in time, such advocacy for those of us who are otherwise occupied with FTD and its dubious charms, becomes mainstream and not just for those who can afford it. It is my hope that the healthcare system will wake up to the dementia tsunami that is upon us, sooner rather than later, but like most things in government, the wheels “grind exceeding slow” to quote our old friend Euripides, who was actually speaking of the ways the gods work, but you get my drift. In the meantime, I will do my best to advocate, navigate and support those I can to weather the storm and come out the other side as I did. If one person’s journey is a little easier for a little time, then I will consider myself successful. And I won’t do a half-assed job of that, believe me.

map and compass

 

FTD – Mission Impossible!

“It always seems impossible until it’s done.” – Nelson Mandela

Work – it means something different to everyone. What is it anyway? I have written about it here before, about what it means to someone with FTD. It represents having control over one’s life, contributing to life, liberty and the pursuit of happiness. As much as we all say “Oh God, it’s Monday already?”, work gives context to our lives, it gives us purpose and drive. If you’re lucky enough to love what you do, then it isn’t “work” in the true sense of the word.If you have a calling, a vocation, then your work is the very meaning of your life.

Three weeks ago, I went into my job of more than ten years as usual. It was the place where I had received a huge amount of support during our FTD years. The place where I felt safe from the ravages of the bastard disease, if only for a few hours. Work was my savior on those days when my world was closing in and FTD commanded my every waking moment. In a responsible, high-level position, I had to focus on other people and their needs, instead of mine and those of my husband. It gave me a wonderful sense of pride and humanity to be in a place where only those closest to me knew what was happening in our lives and those I served had no clue.

Three weeks ago, I went there as usual, bright and early. Two hours later, I was in my car on my way home from that place for the last time. Ten and a half years finished and over. My supporters and antagonists left behind to move in the “different direction” that, it had been decided, did not include me or my position. It’s ok. I tell you this not to glean sympathy or pity. I tell you this because I am happy that I am healthy enough, mentally and physically to understand what freedom this new turn of events will offer.

donald trump

It has given me fresh perspective. I don’t think that the decision was intended to please me, or make me happy, but it actually did and does. Now I have the time and energy to devote to –well, whatever I damn well please. Now, I have the benefit of knowing that I have spent the last ten years working towards this moment. Five of those ten years have been spent in grief and loss. But those people, that place, gave me the strength to get through whatever FTD had to throw at me. My work sanctuary sufficed to give me the stability I needed to survive the last five years and I did.

Actually, I did more than survive. Because, despite the best efforts of the bastard disease, I not only survived, I thrived. I thrived because I had the support, the love and the salvation that I needed to get through it all. All those things that you are going through are survivable. I’m pretty sure you don’t think so, I never did. Actually, I never even really thought of it in that way, I simply got through the day-to-day, just like you do. But now, on the other side, I can see that everything I had in place – my family, my friends, my work, were all just crutches that were available to help me. I know that some of you feel that you have little or no support., your families, or those of your loved one having abandoned you in some way, or they just don’t get it. But, even though you may feel alone, be patient, because someone, somewhere will be coming along I am sure. Not in the romantic sense, but a person or persons who will be a support and comfort to you.

Along my journey, not long after Alan died, I met a woman, a minister no less, who had also lost her husband to FTD. The chances of this happening are pretty random, but meet we did and share we did. She was just in my life for a very brief time before our paths parted, but I believe she came into my life for a reason and I am very grateful for that. She was part of my “life in progress” situation.

The FTD path is never easy, and I mean , never. You all have a different story to mine and to everyone else who is caring from someone with FTD. Some of you work outside the home in addition to caring for your FTD’er and that is challenging indeed. At the various stages, some of which only last for a few days, you come up with ways that will ease your path and get through this particular stage.

For example, when my husband’s sense of time was slipping, I would leave for work before he was awake,  prepare his breakfast, leave a note out on the counter to tell him his lunch was in the fridge and put a note on his sandwich in the fridge saying “Lunch”. Phew!  One time my son went over to check on him at 10 am and he had already eaten his lunch. Hm. So my devious plan didn’t work then.

So with FTD, your new mission, should you choose to accept it, is to invent and reinvent new ways in which to keep your FTD’er alive and well. Every single day. If you’re lucky, you may get through a few weeks, or even months, without a significant change. But change will come, as sure as the sun rises in the morning. It will keep you on your toes that’s for sure. Reinvention of yourself and your routines and schedules is the only way to cope.

  • A sense of humor will keep you sane. Laugh at the ridiculousness of it all. Cry at the futility of everything, then laugh again in the face of FTD and give it the bird.
  • No matter how ridiculous a solution seems, give it a try. You never know. Chocolate ice cream for breakfast? If it gets you out the door to work and them to day care, what the hell? Puddle jumping in wellington boots? Sure. Reruns of “Two and a Half Men” on a loop? Heck yes, if it gives you 10 minutes of uninterrupted time to do something you want to do. Fake ID/credit card? Thank you. When it doesn’t work?- “Oh those things are hopeless, I’ll call the bank/DMV tomorrow and complain”. Kid’s toy paper money? Oh yes.
  • Flexibility with work schedule is a godsend if you can do it. I used to go in at 4am so I could be home at noon. Since my husband rarely rose before 8am, it worked. I realize that’s not for everyone, but it doesn’t hurt to ask.
  • “Therapeutic fiblets” are invaluable. “The car is in the shop”, “I will call _______ tomorrow”, “That door lock is broken”, “The store is closed” etc etc.

As you can see and you know, being an FTD caregiver is in itself a full time job. Being inventive and creative about your life is a necessary part of it. Don’t be too hard on yourself is probably the single most important thing. No-one ever died from not getting a shower today, or eating vanilla ice cream for three meals a day, even with diabetes. Co-morbidities, or other illnesses that your loved one may have in conjunction with their FTD, become insignificant once you’re faced with the inevitability of FTD. Keeping them healthy is a poor second to keeping them safe.

One of the hardest things sometimes is to do what everyone urges you to do – “cherish every moment”. Good advice indeed, but sometimes that takes work too. Sometimes all you want to do is lie down and sleep, even if it means missing a momentary spark of lucidity. There comes a time when you have to give in to your own emotions and exhaustion and give yourself some succor. Being an inventor is exhausting. You come up with a million ideas, but only one of them works. It’s worse than being on Shark Tank. Your efforts will be dissected and rejected. Your FTD’er will give you that glazed-eye look and your plan will bite the dust. Oh well, on to the next thing.

The constant need for change is defeating too. You are trying to keep all the balls in the air – work, home, children, school, aging parents, and that annoying ticking noise in your car. And then come up with a solution for how to hide that bag of Doritos in a place where it cannot be found – again. If you are like me, your job is a haven of non-FTD related stuff. The people there are demanding in a different way and, for some reason, don’t seem to be nearly as much trouble as the one you have at home. The separation is bliss. Of course, many FTD caregivers don’t have the luxury of going out of the house alone every day. For them, life is a constant loop of invention and distraction, cleaning and hiding. You people are warriors of a different nature. Hardened to the sights, smells and sounds of your love slowly drifting away. I for one feel that I got off lucky in some respects. Going out to work saved me from my own insanity. I salute you for being there 24/7 and giving your all. Caring for someone with FTD is definitely not for wimps and Mission Impossible is handled every day.

This message will self-destruct in one minute. Make sure that you don’t.

 

FTD & Resilience. Get your Nikes on!

Running shoes

You’ve heard me talk about strength, courage, pain and love in my articles here.

Resilience

 

 

 

…………………Now that’s something completely different.

Imagine you are in the middle of running a marathon. You didn’t have time to train for it, someone just called you and said “Hey, the marathon is tomorrow, you’re in!”

No training, no diet changes, no education, no building up for it.

The marathon that is caring for someone with FTD is a little like that. It can start pretty slowly, innocuously. And you think, hmm this isn’t so bad. You try to pace yourself. everything’s under control. You see the first few miles go by, stretch the legs a little, take a few sips of water. After about 5 miles, you’re into it now. Rhythm, pace, -you know you can do it!

Those first weeks, months, even years for some people with FTD can seem quite manageable. You get a little routine going. You are able to continue many of the things you did before the diagnosis and/or suspicion. Going out to dinner, visiting with friends. Trips, movies, all the good stuff that life is all about.

Then, around mile 18 (or so I’ve heard) you hit what is commonly known amongst runners as “The Wall”.wall

The wall is a fearsome thing indeed. The wall in FTD comes around the middle stages.That time when your loved one begins to metamorphose into someone you don’t know. Then the race really begins.

running gif

You have barely got used to the very fact that something is different and changes will be coming, when bam! Here they are. The changes. The mood swings, the irrationality, the anti-social behavior and well, frankly, the meanness. Then all you want to do is run away. FTD is most definitely not a sprint, its a marathon.  A marathon you haven’t trained for. A marathon with no medal at the end. Sometimes you will have a team with you, other times you will be solo. Most of the time, you will be running alone. Coping with this requires the resilience of a marathon runner for sure.

Resilience is one of those spirits contained within humanity that helps us to endure pain, torture, loss and grief. Resilience is what has helped humans survive for millions of years. You CAN endure. You can and will overcome. I know, I’ve done it. You have what it takes contained within you. It’s all trained and ready to go. There’s no manual. No neat set of instructions. You know your loved one better than anyone. You know what they need. You know what you can give. And just when you think you can’t give any more, you will find a reserve within you that will help you go on.

Resilience. It helps the millions of marathon runners cross that finish line all the time. In the FTD world, the finish line is not one we really want to reach. We don’t want to get to that banner across the street that tells us it’s over. As painful as the race is, we don’t want it to be over.

Benjamin Franklin (not a man who ran many marathons) said:

“I didn’t fail the test – I just found 100 ways to do it wrong”

Your test, your assignment, (should you choose to accept it) is to run your marathon with the heart of a lion, the stealth of a tiger and the resilience of Nelson Mandela. Now there was a man who knew about resilience.  Your life as you knew it is changed forever, just as Nelson’s was. Acceptance is not the same as giving up. Accepting the results of FTD is not giving in to it. Accepting is not resignation. Acceptance is a tool that will help you win through, one battle at a time. One wall at a time. The finish line will eventually be in sight.

The banner across the road will read “Finish”. You will not receive a medal. But you will have the satisfaction of knowing that you did everything you could to carry you and your loved one across that line. Everything you could, despite the blisters in your heart, the pain in your soul and the sweat on your brow.

Medal of the heartHere is a medal for everyone who is caring for Frontotemporal Degeneration right now. I commend your bravery, your love and your resilience.

FTD – For 10 points, your first question is……..

Question mark purple

At the end of 2013, I asked if there were specific questions to which you would like me to respond. The responses and subsequent questions and comments were interesting and varied.

Most people seem to want to know what it was like for me. How did I cope? What little things made a difference to me? What gave me strength?

I have also been asked – How long was my husband ill for? How did I know when to move him into residential care? What was that like for me?

Other people seem worried by what moving forward to the next stage will mean. For them, for their family, for their loved one.

There are a million questions it seems. Obviously I don’t have all the answers. No-one does, nor can they. The uniqueness of every person means that we cannot generalize. The general rarity of FTD in relation to other dementias like Alzheimer’s means that the answer for one person may not be right for another. It seems that no two people or their caregivers have exactly the same experience.

So I feel that all I can do, post by post, is to take each of the questions and give a summary of how I dealt with that particular problem, or how someone I know dealt with it. Hopefully, you will find ideas to create a solution to your problem of the day, week or moment.

Number One 10The first topic – what things made a difference for me? Made it easier to cope?

Well, mainly my family and friends. Without them I would have gone completely insane. Their unconditional love and ability to know when I just needed someone on the other end of the phone was uncanny. To just listen to my crying at the other end of the phone. Just to hold my hand without speaking. To go and look at Care Homes for my husband, even when they didn’t want to.

I consider myself lucky in the extreme to have them in my life. My coworkers were amazing. Every day. every week. Every month. Listening, covering for me. listening some more. Shoulders to cry on, hands to hold. Hugs to give.

For three years, I had to put my usual fierce independence aside and take the help that I had always eschewed in the past. I could not do it alone. Don’t ever think that you can. Don’t even try.

I know people who had to do much of it alone. They were not as lucky as me. They had no family to speak of. One woman would tell us at the Support Group that her in-laws would not believe what was happening to their son. They refused to accept his illness. They accused her of controlling his life and keeping him from them. But they never offered to have him stay with them or come over and stay at their house while she went out for a day. They would never accept that he was no longer capable of making his own decisions. Not until the end stages.

Once he could no longer walk or talk or feed himself independently. Once they saw that his wife had to call the local Fire Station to help get him up if he fell down. Once they saw the soiled bed she slept in next to him every night. Once he died in his own home after she had taken total care of him for three years. Sacrificing her life and her work for him. Without them.

Without them. With the help of friends and respite caregivers. Without his family’s help.

Everyone deals with things in their own way of course, but I doubt she will ever forgive them for being so cruel.

So rally your friends & family. Tell them everything. Pull no punches. It is what it is. It’s not your fault. It’s not your loved one’s fault. There will be unpleasant, painful, exhausting times ahead. Rally the troops and figure out a plan. If it’s early days, ask your loved one what they want. How they want to be cared for. By whom. And what they want for you.

Don’t leave it too late for those conversations. With your FTD’er and your family. Don’t put it off. It’s important.

I was asked what made a difference to me during the time I cared for my husband. It was people.

All the people that make up the circle of my life. They were with me then and they are with me now.  They are not just people. They are MY people. I love them.

They know who they are. They love me. When I have red eyes, when I’m sobbing, when I’m complaining, when I was just damn exhausted and could not go on. They helped me go on. They made it possible for me to get up every morning and do it all again.

Thank you.

All of you. I will never forget what you did for me.heart and hands

Courage in the face of FTD. You can do it!

Courage

Oh Ernie! Ain’t that the truth! Such insight.

People will describe what you do as “Courage”.

You may not think what you do is courageous. But it is. You may think that anyone who loves someone would do what you do. But they wouldn’t.

You may think that if you love someone you do whatever it takes. If you’re married, you vowed to love and care for them “in sickness and in health, ’til death us do part” didn’t you?.

Death will part us all eventually of course. How, when and why remain a mystery. If it’s from FTD, you will have your love, your loyalty and your courage severely challenged.

The words ‘challenge’ and ‘courage’ are complimentary. The people I meet who are working through FTD face every challenge with courage they never thought possible. You will be amazed how it appears. You have no idea where it comes from.

People will compliment you upon it. Admire you even. Of course you’d rather not be admired for it under the circumstances. But honestly, it is nice to receive credit where it’s due.

And it is due. You should take it.

The courage required of you to traverse the rocky path of FTD would match anything that an Everest climber or a lone Atlantic sailor has. You will need every ounce of your being to watch the slow descent into the unknowing abyss. The abyss into which your loved one slips. Like a person falling off a cliff or a high building, you will first grasp their wrist, their palm, their fingertips and finally be forced to let go.

The ‘letting go’ isn’t death. It is allowing yourself the courage to face the truth. The truth that FTD, the silent thief, is doing its dirty work against you. Accepting this requires the courage that you didn’t or don’t think you have. But you do.

You really do. Sometime in the future you will realize that what you did was almost superhuman. You will realize that courage isn’t about physical strength or getting through a crisis.

It’s about realizing and accepting that which you cannot change. (As the saying goes)

  • You are no longer ‘a couple’.
  • You have to think of yourself as a single person. BUT you’re not. You are a widow or widower- in -waiting.
  • You have to make decisions that you don’t want to make.
  • You will need help, which you may not have ever needed or wanted before.
  • You will feel exhausted.
  • You will feel overwhelmed. 

Not all of them, all the time of course. But all of them at various points in the journey. It’s ok.

Courage is what will see you through. The courage derived from your love, your loyalty, your fidelity to your love. You have it. It’s in there. Just search round in the myriad of emotions that are going on with you in the moment. Draw on it like water to a man in the desert. It will bring confidence, relief and strength.

Courage is not the same as strength.Unpleasant awakening

Strength is what you will build throughout your journey. Courage is you. Courage is what you possess inside. It is there to help you through this. It is there to help you build the strength. If you were lucky enough to have had a strong, loving relationship through the years as I was, your partner will have helped you build this courage. He or she will have built upon your innate courage and turned it into something that will help you to help them.

Power.

The power to weather the storm. The power to make your love the guiding force.

The power to show your courage proudly for all to see. Like a banner.

One that you can fly proudly as a demonstration of your courage.

Flag on the moon

Eight things you can do when your spouse has FTD

cliffhanger

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.

love cookiesOh and cookies………

Frontotemporal Dementia: It’s Not You

Image

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.

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

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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.

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Mens Sana in Corpore Sano (no – nothing to do with Saunas)

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“Healthy Mind, Healthy Body”. Sadly for someone with FTD, this is almost never true. The disease often strikes people who are generally otherwise healthy, by chipping away at their frontal lobe. This insidious waste begins with a few word-finding issues – a ‘slip of the tongue’ for you and me; a signal that something is wrong for the affected. Overall fitness and health is relatively unaffected.

Throughout the five year span of his illness, my husband remained strong, fit and active. Walking and getting up by himself – even up until about two weeks before he died in fact. He never had any physical ill health until he could no longer eat or drink well. Clearly one cannot last for long if you can’t do that. Here’s a few things to remember:

  1. Keeping your body healthy may not always mean that your mind will be so.
  2. If you and your partner are unfortunate enough to have to endure this journey together, remember that forewarned is forearmed. There are so many things out of your control at this point that just going with the flow is the easiest option for everyone.
  3. If it’s not hurting anyone, leave it alone. Choose your battles.
  4. People with FTD often retain intellect for a long time into their disease. So coupled with physical strength and health, this can make living with and caring for them very difficult indeed.
  5. As the disease progresses, cognitive skills – insight and logic for example, decline at a fairly rapid rate. But this is very insidious and often barely noticeable for weeks at a time.
  6. What is noticeable is the strength and will that goes along with the irrationality. It’s sort of like having a six-year old “Incredible Hulk”. He can push things (and people) around, throw things and resist with great strength.
  7. Retain a sense of humor at all times.
  8. You cannot reason or argue that they may want to do it another way. You have to concede, wait and go back later. Re-approach and use the fact that they have forgotten to your advantage.
  9. Unfortunately this may not work in Safeway when he is trying to take someone else’s cart, or chastising them for wearing their pajamas and slippers to the store. Or laughing out loud and pointing at someone’s haircut/shoes/outfit.
  10. If you’re five foot nothing and attempting to control this behavior in a fit, strong man of fifty-four – Good Luck! Learn some new techniques (see below).

Number 7 is probably the single most important thing.

There is lots of information and support available at www.theaftd.org

Many support groups are springing up as FTD becomes more frequently diagnosed. Even if you’re not a support group type of person (I wasn’t), you will meet people there who are going through very similar things to you. They are comfortable discussing incontinence, public urination and swearing. You will not be telling them anything they haven’t heard before. New information is discovered every day. Sharing yours helps other people.

Having an FTD diagnosis will make you rethink your entire life, philosophy and values. You will find the mental strength to combat the physical stressors. Hang in there.