FTD – from someone who knows

no_flowers

This enlightening blog is written by Cindy Odell. Cindy has FTD.

http://www.ftdnoflowers.blogspot.com/

Cindy writes thoughtfully and honestly about her diagnosis, her life and her frustration as FTD slowly dissolves everything in her life. I am so in awe of her spirit and determination not to let the bastard disease off lightly. I am also saddened that such bright, articulate and intelligent men and women like Cindy are so cruelly struck down by FTD. 

I admire the fact that Cindy is able to articulate her ups and downs. She fights with every word she writes. Cindy has courage, tenacity and retains a good sense of humor too!

The human spirit is stronger than anything that can happen to it.

                                        — C.C Scott

With FTD, there are no flowers, no accolades, no prizes.

But the human spirit blooms proudly, despite what FTD tries to do.

Beautiful strength

FTD – Friends, Truth and Disconnection.

friends

One of the hardest things for the caregiver of a person with FTD has to handle is the withdrawal of friends and family from the day-to-day happenings in your world.

“My best friend who does call me or I call him several times a day is the only one and he doesn’t want to come here cause he doesn’t like seeing Peg the way she is. So hurts sometimes”.

– James, caring for his wife.

It’s not enough that you are living in an environment of silence, anger, pain and downright belligerence at times, but you also have to suffer the “slings and arrows of outrageous fortune” . To “take arms against a sea of troubles” is more than you can bear to do. Putting this into perspective (and in non-Shakespearean language to which we can all relate!) – you don’t have the energy or the time to persuade, cajole or help other people to come and see someone they have previously professed to love and respect.

What’s more is that, not only do friends sometimes abandon your loved one, they abandon you too. It’s sad and painful.

“I don’t blame those that distance themselves. Not sure how I would handle it if the roles were reversed. This disease makes people very uncomfortable”.

– Roger, caring for his wife.

You will get through the most harrowing experience of your life with or without them. And there will come a time, much later, when it will no longer be important. They have their own stuff going on. Their own problems, their own domestic issues. Their own fears and failures. I don’t think that makes it alright that they abandoned you in your time of need, but bitterness is a useless emotion. Revenge is not sweet.

Shield maiden

You will attain a plateau of indifference. Not that you don’t love them as friends anymore, but afterwards, the shield that you built to protect yourself from the “slings and arrows” of FTD will also protect you against the absence of something that was not as robust as you may have thought anyway.

“I think if we can help people overcome their fears, let them know it’s okay to feel awkward, say something stupid, stutter or act like an idiot, at least it’s interaction, and maybe the next time won’t be quite so awkward. Of course everything makes more sense in hindsight, and it’s nearly impossible to change other people. So even though I’m pretty sure I know why they do it, I’m not sure the change will ever happen if we leave them to their own devices.

– Rip, caregiver to a loved one with FTD

Rip is right, you have to let them know it’s ok. Whatever level of support they can offer. If that’s an occasional phone call, then let that be ok. If that’s dropping you from a circle of friends completely, then let that be ok too. You’re in control only of you. The most oft-used saying in the FTD world is:

“It is what it is”

That is never more true than in every FTD day. And so, the friendless situation is the same. You’re not friendless. It just feels that way sometimes. What it is is different. Different people that you have come to know, those who get it. The ones who are going through the same things as you. Not exactly the same, but relatable experiences. Different daily routines, different perspective. Those things that you always took for granted are different now. Like friends and conversation. It’s like starting a new job. everyone seems strange at first, but familiarity ensues and you make friends with people that you never would have found if it wasn’t for FTD.

It has to be said that friends can also be your rocks, your place of retreat. Those that stick around and hold your hand – physically or metaphorically, can do it from next door or thousands of miles away. They will take your call or tears at any time. One lesson I learned from my experience with FTD was that the people who were around just took to the situation without any request or discussion. They just did it. They behaved no differently towards my husband, treated him with respect and love just as they always had. They still do, even now he’s gone. He had less-than-perfect behaviors even before the FTD and they knew that. We all did. We all do. There’s the rub. We all do. None of us have perfect characteristics or behaviors, with or without FTD. Some people are just “not comfortable” with those things that lie outside social norms.

If I’m honest, maybe I was not either before my run-in with the bastard disease. Maybe I was less than tolerant of the frailties of others. Even without the presence of a terminal, devastating illness, my own behavior could have been better. It probably still could at times. I am laughing right now as I write. Since the FTD circus left town and I said my last goodbye, I have become much more introspective. FTD took almost everything from me, but in fairness, it gave me some things too. I learned more patience, tolerance and how much love I had inside me. I also learned how to not think less of people who are not like me. A hard lesson and a humbling one.

Now, I view friendships and relationships much differently. Or even indifferently. Not for what they bring to me, but for what bring to them. I am working on taking things a lot less personally and trying to see things from a more objective point. Although, in contradiction to this, my own defiance and defensiveness were the very things that helped me fight for what was right for my husband, so they did come in handy there. I had a very strong shield. The shield was reinforced by the love and support I received from the people who did stick around.

So, to quote the song “You gotta have friends”. You really do. They just might not be the ones you expect.  Lending a hand comes in many forms.

friend hand

 

 

FTD – Only the Lonely Know The Way I Feel Tonight

“I have lost the one person with whom I could share everything. I still talk to him like he understands but he just looks at me. Lonely doesn’t begin to describe this feeling. My biggest fear is that I have not cultivated enough close friends to sustain me when he is physically gone. There will be a lot of empty hours to fill” – Christina, caregiver to her husband.

These are the words of someone who is caring for a person with FTD. Sometimes, when you get caught up in the day-to-day life of a caregiver, you lose sight of yourself and reality.

Dealing with constant observation and supervision, food fights, diaper changes and walks keep one busy. Akin to the life of the parent of a toddler, one often yearns for a little peace and quiet. But after all that, after the night comes and calm is present for a short while, the pain of not having your partner to bounce the day off sets in.

Wanting to take advantage of time when you are not needed to guide what can often seem like a military exercise is natural of course. A little time to yourself, quiet time to just sit and do nothing seem like a pipe dream. But when it happens, you don’t really want it. All you want is to have those times back when you sat and talked About nothing, about everything. You just want it back.

“Conversation, I think that is worst. I spend all day talking to someone who never answers me back. Or seems to understand what I’m saying. And then when I do get her to bed and have my quiet time is when it sets in. Oh well the life of FTD” – James, caregiver to his wife, Peggy.

The quiet brings different feelings too. Pain, anger, sadness. Left to your own devices, you begin to dwell on how things might be different if it weren’t for the damn FTD. Conversations about your day, your work, your kids, your friends. The vacation you’re planning, the honey-do list.

Fear and dread overwhelm you. Fear of what you know is to come. Dreading the end result of this bastard disease. But still you endure. Still you go on, because – well, what else can you do? This mission that you have accepted has no defined beginning or end. It just morphs into a total disruption of your life. Eats up your love like an insatiable demon and forces you to think of the unimaginable.

“I’m always torn between being grateful for the peace and quiet so I can relax from the responsibility/demands for a bit, then the lonely crawls in and takes over.” – Lynn, caregiver to her husband, Len.

Guilt can be a powerful emotion during these times. You long for the times when you felt “happy”. Remember those? Happy is hard to define until you don’t feel it any more. Then you know. You know exactly what is is once its gone. And if you do happen to have a smiley moment, the guilt will jump up and slap you in the face. “How dare you feel anything but duty, loyalty and subservience at this time?”  Laughing? Don’t you dare! The FTD guilt police will be after you!

All the negative emotions you feel – guilt, loneliness, emptiness, are far surpassed by what you are achieving every day as someone who fights this evil disease. Yes, you’re fighting. You know you can’t win, but you will give it a good run for it’s money. Being alone when you are with someone is absolutely soul-destroying. A form of torture in my opinion.

“That was my worst feeling. Being lonely even though my husband was right there.” -Michelle, caregiver for her husband.

Even commenting on something you are watching on TV, or see in the street returns little to no intelligible or understandable response. It’s like solitary confinement, except you are allowed to go out. Those little private jokes you shared belong only to you now.  Even menial things around the house can become a trigger for loneliness. The chores that your other half always did suddenly don’t seem to get done anymore. It takes you a while to notice, but one day, the plants in the yard are all dead, the pool isn’t cleaned, or the laundry isn’t done, or you have no dinner when you get home. It comes as quite a shock, that they don’t remember how to do those things anymore.  It’s not important to them. Not as important as where (and when) their next meal/snack is coming from, or where their money is. How did that happen? Their ability to think of anyone but themselves drives your loneliness. As they withdraw into their FTD world, so do you into yours. You have no choice.

‘The other night our dog started barking. I had to wake up Ian to tell him I thought someone was outside. He ever so slowly got dressed, went to the toilet then strolled out and then asked me what I wanted him to do? I sat alone crying because it made me realise how truly ‘on my own’ I am now.”  – Vicki, caregiver for her husband, Ian.

I know that you know all this if you are or have been a caregiver of someone with FTD. I don’t have any magic answers, but I do have the advantage of hindsight. Although I can’t tell you how not to feel, I can tell you that with each phase and stage of FTD, as your loved one’s behavior and level of withdrawal changes, so will your resilience. Your strength will come from those of us who have gone before you and survived. Think of it as a marathon, with some runners just finishing and some just beginning. You will get to the finish line in the end. It’s not the end you want, but it is an end. You will handle the cramps and blisters along the way, because you are travelling with someone you love and they need you to help them reach the finish line. If you don’t love them, then I admire you even more, because this is not a journey for sissies. This marathon is only for the stout of heart and those with levels of determination that would defy gravity.

The loneliness of the long-distance runner cannot be underestimated. Take heart from the people on the sidelines, cheering you on. They may be people you know, or total strangers, but they are there, waving their flags and handing out cups of water.

As you escape into your quiet world tonight, when the tumult of the day has finally fallen into a calmer place, close your eyes, breathe deeply and exhale the loneliness. Feel it leaving your body and just enjoy the peace. For tomorrow will bring new challenges, new belligerence, new meanness.

You can do it. I know you can.

Breathe.

Spa

Return to the scene of the FTD crime!

Home heartAfter three years in the wilderness (well, not really, but it sounds better than “after three years living somewhere else”). After three years away from my home, last weekend I took the plunge and returned to where it all began. My war with FTD that is.

Seven years ago, my husband was diagnosed with frontotemporal degeneration. We lived together in the home we had shared with our family for the previous seven years. Five years later, he died. Broken down into a myriad of confused pieces by the degeneration of his brain, he slipped away peacefully at the place he was living, ten months after he had left our home for the last time.

Last weekend, I went back. I had driven by, but never been inside since the day I left, about four months after he moved into a care facility. I couldn’t manage his behaviors at home any longer, not and work to support us both too. I left the house because, well, now I’m not really sure why. I just knew I couldn’t stay there. Maybe because I felt so alone, maybe because the house felt too big. I don’t really know. It felt like the right thing to do at the time. I have said several times that I didn’t think I would ever live there again.

But last Saturday, I changed my mind. It’s allowed, right?

I went back to look at the house since the lady who was renting it had moved on to pastures new. I knew some updating would be required, so I went to see just what needed to be done. All week, I had been going back and forth between the choices I had. Do I rent again? Do I sell? Or – do I go back?

Well, I have decided go back.

I am going back to live there because I found that it was not as emotionally disturbing as I thought it would be. Like most anticipated, maybe even dreaded events, it was not nearly as bad as I had imagined. It actually still felt like home. There were a couple of tearful moments, but certainly not the anguish I was anticipating. The tears came from good memories. From fun and funny times. From love. Love for my husband, love for my family. I realized it was not the house that gave me bad memories, but FTD. Home-Heart

FTD was the bad guy, not my home. Not the place where we laughed with friends, played with our grandchildren, relaxed in our pajamas and laughed at the stupid things that noone else would ever find funny.

FTD was the destroyer of all that, not the house. There are no do-overs with FTD. It’s done now, no going back.

But I can go back to the place where I feel at home.

Oh yes, it needs a little makeover and a new hairdo, but that’s good. When it’s done, it will look different. It will be different. A little like me. Changed forever but with the essence of what it is still intact.  My home.

My husband loved our house.  When we relaxed out by the pool, for a long time we had a favorite CD – Crowded House Greatest Hits. Our favorite track was “Don’t Dream It’s Over”. As I drove away from the house on Saturday it came on the radio.

https://www.youtube.com/watch?v=J9gKyRmic20&feature=youtu.be&t=19s

Whatever you believe, the final decision was made and confirmed…..

HeartHome

‘My happiness meter is so different now’ – An interview with Deborah Thelwell

Deborah Thelwell:

Here is an interview I did with Rob Perry who lost his mother, aged 55 to FTD in 2013. His questions certainly made me think! Let me know what you think…..

Originally posted on demention:

For this blog post I have interviewed Debra Thelwell whose husband, Alan, sadly passed away in 2012. He was diagnosed with frontotemporal dementia (FTD) in 2007.

It has been a pleasure to conduct this interview with Debra; she has blogged extensively about her experiences of FTD and recently published a memoir: The Dance: Our journey through frontotemporal dementia

As always, I hope this post raises awareness of the disease and in particular the sheer scale of the havoc that it causes. This is the first interview in which I have questioned somebody who has experience of adapting to life post-FTD and it is clear from Debra’s answers that this is an endless and ever changing process.

—————————————————————————————————————————————–

I understand that your husband sadly passed away two years ago after living with FTD. Perhaps you could start by explaining your story in more detail?

My husband and I had been married…

View original 2,753 more words

FTD – R and D? Finally! Happy New Year Arnold!

So here we are. 2015. Happy New Year! I hope that FTD is kinder to you this year. It seems like we are finally seeing a little money being made available for research into defeating the invader into our lives – FTD. Check out this link to further details:

http://www.healthline.com/health-news/nih-grants-30-million-to-study-frontotemporal-dementia-011015#1

Arnold Pick2As you may know, Arnold Pick is arguably the most famous person to describe a premature kind of dementia that we now know as FTD. He called it Dementia praecox” In 1891, Dr. Pick described rapid cognitive disintegration, often beginning in the late teens or early adulthood.  Nowadays, frontotemporal degeneration refers to a group of conditions. But at the end of the nineteenth century, work was just beginning on discovering more about this group of disorders, which originally were thought to be psychiatric in nature.

There had been many other physicians, neurologists and psychiatrists all the way back to 50 B.C.E, when a man called Lucretius used the term  “dementia” to describe “being out of one’s mind”.

LucretiusSo, after two thousand and sixty-five years, it’s probably about time for some some money to be put into research, since so much is still unknown about this demon that we battle every day. We hear about Alzheimer’s Disease ad nauseum. I truly understand that caring for anyone with any kind of cognitive disorder is draining,  deflating, soul-destroying. Believe me I know. But the powers that be really need to wake up to the fact that the vast majority of people who develop Alzheimer’s Disease are elderly and require a completely different kind of care to those amongst us who have three children under the age of ten, or teenagers who are grappling with the fact that their parent is not their parent anymore.

Awareness is paramount to the cause of those young men and women who are the partners, wives, brothers and sisters of those afflicted by the bastard disease. Those people who have had their lives snatched away, chewed up and spit out so that their loved one is now an infantile version of their former self. Those beloved ones who are thirty-some, forty-some and fifty-some years old and who will never again understand their role in life. It’s not as rare as one might think or be led to believe by the article above.

Lucretius knew. Arnold knew. They just didn’t really know what they knew then. I would love for them to be spirited to the here and now and see how epidemic their discoveries have become. Of how millions of lives are affected. I wonder what they would think of the vast array of technologies and advances available to us now and despite our knowing much more than they did then, we still don’t know enough to make it go away. Maybe we would know more if we dedicated more time and resources. If we threw everything we had at the bastard disease. If politicians were less concerned about where their next “business’ trip is coming from (or going to). If big pharma were less focused on making money selling their wares and more focused on finding cures. If governments (and not just ours) were dedicated as if it were their own spouse that needed the help.

The zeitgeist needs to change. If you have loved or even just met someone for whom FTD is a reality, you know that social perception and awareness is light years behind the reality.

FTD is occurring globally on an ever-increasing scale. Social media groups are popping up all over the place, with more and more new members seeking support from one another. There are scant resources to help them. They only have each other. The lack of knowledge, the guilt, the resentment, the love. It’s all there. People don’t know which way to turn. There are people who gladly share their knowledge or experience, but sometimes it all seems so futile, Is this what it was like for those people who experienced those things of which we are now so accepting but were the FTD of their day? HIV/AIDS?  Unwed mothers? Homosexuality? I realize that those things also carried (carry?) social stigmas, but FTD can do that too.

Friends, or those we once thought were friends, shy away, not calling or coming to visit. Making excuses not to go out together. It all comes down to fear. Fear of the unknown, of the “I don’t know what to say”. Of feeling embarrassed.

Sometimes I wish someone famous would develop FTD. Then maybe people would sit up and listen. Not that I would actually wish the bastard disease on my worst enemy of course, but anything that would bring a huge public eye-opening about what is happening would be a major breakthrough.

We’ve all heard of Arnold Pick, but most people have not. If he were here now, more glamorous and in a position of power, people would really sit up and listen, right? Right, dream on. I guess there are too many people and groups with vested interests in too many other things.

I always think it’s sad that money dictates how much attention, time and resources are dedicated to one thing or another. If we are humanists, shouldn’t we be doing these things for the greater good? Of course, the researchers all have families to feed too, so I can’t begrudge them that. Just don’t want to line any fat cats already-bulging pockets. Anyway, not to be ungrateful, I think it’s wonderful that $30 million is dedicated to our cause.

To end on a lighter note,  here’s a little dementia humor…….

Return to Rita

 

 

FTD Christmas Present and Future

Christmas presents

Last year, I wrote about Christmases Past. As we inch ever closer to the magical season, my thoughts wander, of course, backwards to happier times. Christmases when our children were small. The Christmas Eves spent at home wrapping gifts, cooking, baking, drinking. Watching old movies on the TV, laughing and joking. I feel very thankful to have experienced all of this. To have felt the love and warmth of happy times with the people I loved and who loved me too.

Later, as we moved through our FTD journey, we all tried to maintain those comfortable feelings. Of course, the children were grown by then, but we maintained our traditions, and they, in turn brought their girlfriends, friends and then wives and children to our table and our funny little quirks.

The last Christmas my husband was alive, we had planned a huge family get-together. He didn’t know of course, but we imagined that he would be delighted as Christmas was always his favorite time of year and to have all of us together would have been his joy. His brother and sister-in-law from Los Angeles, and our son and his family came from Washington state and they all stayed at our house. Our other son, who lived close by was over too with his wife and young son.

A recipe for disaster really.

In the FTD world, any form of change of the environment or even social activity can wreak havoc on the proceedings. Since they have little sense of time or social propriety, family gatherings can be a nightmare for both FTD’er and caregiver. If they are unable to speak well anymore, or understand the flow of a conversation, you will find them skulking off to a distant bedroom where they can be at peace. You and everyone else will have to learn to accept that they just can’t take it any more.

Anyway, back to our story. The family were scheduled to arrive on December 24th. On November 22nd, my husband was admitted to an inpatient psychiatric facility or the first time. On December 9, we moved him into his first residential home. So when we all gathered for Christmas to spend it with him, for what we thought may be his last Christmas, he wasn’t there.

He wasn’t there for the Christmas Eve cooking, wrapping and drinking. He wasn’t there for the Christmas Day mimosas, bacon breakfast and Christmas dinner, complete with crackers, pudding and silly paper hats. He wasn’t there for Boxing Day football, beer and leftovers.

christmas crackers
We visited him of course. In shifts because he couldn’t take all of us at once. We gave him gifts which he did not remember how to open. Ripping paper! One of the earliest memories of Christmas for all of us. The gifts we gave were cast aside. He genuinely did not even understand the significance of the day.  We left sad and dejected that our fun-loving husband, brother, dad had forgotten how to Christmas. We went home and ate our turkey dinner quietly, guiltily almost. We played our board games thoughtfully. We toasted him fondly. To quote myself from last year, he would have been really pissed off that we were doing it all without him. How we missed his tipsy jokes and raucous laughter. We never heard them again. He never came home again. It was the last Christmas of his life, as I knew it would be. I don’t know how I knew; sometimes you just do, don’t you?

But those were Christmases Past. For the last two Christmases, he has not been here in body either. The sense of occasion we all once felt has somehow been diluted. As if he took the spirit of Christmas with him.

We still have our celebrations of course. We try to keep the traditions going and to embrace some new ones. We always had a very “English” Christmas. But now we have American children and wives to consider and so we have Transatlantic Festivities, which include some Mexican traditions too. Our grandchildren have a very multi-cultural holiday! Some of this started when he was still with us mentally and physically. He embraced it all with his usual generosity and charm. Our Mexican family had an aged aunt, about 90+ years old (no-one really knew) who had been a nun and was now cared for by our family. My grandson called her “Little Tia” when he was about three years old and the name somehow stuck and everyone called her that ever after. She seldom spoke and only understood Spanish. But she and my husband got on like a house on fire, especially once his speech deteriorated too. They would just smile at one another, and she would come and sit next to him at the dinner table and he would help her with her food. Touching and indicative of his humanity that still remained despite FTD doing its damndest. Christmas-Dinner

So we made new memories and built new traditions before he left us. I like to think that somehow, he was helping me ease into this new life that I now inhabit. Helping to start new traditions and build on the old ones so that I would have something to carry on with.

My mother has flown from England to be here with us this year.  She’s 81 so it was a very long, arduous trip for her. Last time she was here was in 2009. My husband was in year 2 after being diagnosed with FTD. So he was still fairly highly functioning at that time. There were a couple of incidents, which she did not tell me about until much later. It was our habit when she visited every Christmas to give her a gift that she did not have to carry home on the plane back to England. So it would be a day at the spa or something like that. My husband would take her on a day when I was at work, and she would spend several hours there being massaged and generally pampered. That last year, he dropped her off at the spa, with the agreement that she would call him when ready, as usual. He said “OK” and left. Fifteen minutes later, the assistant came to her and told her that he was waiting out in the lobby for her. He had no idea about time by then, you see. He was in that weird middle stage where everything seems to be ok, but it’s really not. She went out and told him to go home and she would call him. He left, but sat in the parking lot until she called. I think that he was worried that if he left, he would not find his way back again without her. He stopped driving the following year.

I am sure it seems very strange to my mother that he is not here. I have visited her several times in England alone, both before and since he died. But being here, where he lived, it must have finally hit home that he is not around anymore. She doesn’t really ever mention him. She can’t read my book about our journey. When I have visited England since he died, it’s as if they are all stuck in a timewarp, because they were not here when he was going through FTD and only remember him as he was before. Lucky them. I live with a foot in both camps, pre-and post-FTD. But also I went through the middle part along with a handful of family and friends who can truly relate to what happened.

So, Christmas Future. What is that like? Well, now I am living it, it’s actually quite nice. It will be my third without him. I still long for those old days of course. But there’s no going back and no point dwelling on the past. My life was changed and that’s just it. But it’s alright. I am healthy, live well and have  wonderful family. None of that makes up for him being gone of course, but it does ease that pain somewhat.

So all I can do is make the new Christmases memorable for those who will go on long after I am gone too. Give my grandchildren the kind of memories I and my children have. Make indelible marks on their future by stamping my identity on today.

I wish everyone a peaceful and FTD-less Christmas. I hope for someone, somewhere, to have a “Eureka!” moment and suddenly find out why the bastard disease is able to be so successful. And to find a way to destroy it as it has destroyed so many others before. Not just for Christmas, but forever.

Merry Christmas one and all!

Tiny Tim