I've done a lot of reading this weekend, searching for sites and information about Frontotemporal Degeneration. I read other people's stories about their experience with this disease; I've watched videos of caregivers and of the loved ones with the disease. And everyone's experience is unique, including the "patients" themselves. I've read forums where a person asked a question specifically about FTD, but the answer by the "expert" was all about Alzheimer's. Doctors are not familiar with it - it isn't a "big" disease. It is estimated on some sites that 50,000 to 60,000 people suffer with FTD - some sites say as many as 250,000 if you count the misdiagnosed or the undiagnosed. The only definitive diagnosis comes with an autopsy at the death of the patient.
The stories are all heart-wrenching. Some have suffered so much from the very beginning with more drastic exhibition of symptoms, both physical and behavioral. The message I took from it all is that it is all a game of wait and watch. There are no real predictions of what's to come in what order, of exactly what the progression might be - and no treatment of the disease. If the diagnosis was cancer, it seems we'd be scurrying to get prescriptions or more tests or scheduling biopsies or surgeries or treatments. I feel my only thing to do is to educate myself on the topic, get my head wrapped around what our family needs to do, and spread the word about this disease. I don't do well at "waiting". Ask my daughter! It does give me hope that my husband's situation may be atypical. It seems to me his disease has progressed fairly slowly thus far (and if I'm being naïve, so be it!). Though we have no specific date in time of when it started, it is reasonable to believe it began 13 years ago. Yes, if I pick a date 13 years ago, and today, there is a drastic difference in his personality and behavior. But it is all pretty subtle compared to what it could be. We are lucky he was a gentle, fairly reserved person on a day to day basis. I think that bodes well for us. And in 13 years we haven't seen the physical effects that can be associated with this disease. He walks, he talks, he laughs! And somehow in my mind, I think it will be when the physical symptoms begin to appear that I will begin to worry; that this journey will become more difficult. In the mean time, today is no different then the last week or the last month. Except now I "know". And that, I'm finding, is an amazing gift.
Today was my daughter's birthday dinner. Her boyfriend, my son, my husband and I ate a yummy dinner, and had cake and ice cream. And that experience was very different from a week ago or a month ago. Because we "know" - we know this is the way he is, and somehow having a disease to blame it all on makes things so much more comfortable and easy. We don't feel angry or annoyed with him - just with the disease. We are more patient about showing him what to do to help. Or how something works. We know why he disappears upstairs after dinner. We may be in a honeymoon period with this, I realize. But this is our new reality - and for now, it's a better reality on a day to day basis then it was a week ago. My husband's symptoms are no different, but we have knowledge we didn't have a week ago. My brothers and sisters now know, and their children will know. SO many things will be more comfortable. I won't feel like I need to apologize for his behavior, or be so embarrassed in some situations. I hope my children will feel the same.
Our reality will change, I'm sure, as the disease progresses. But I've decided not to wait or watch for something to happen. When things begin to change, I'll know. I've been empowered by the diagnosis. It has given me some relief from worry. It has allowed me to have a sense of his reality, his inability to change how things are. So I'm going to enjoy our life a little more as it is with my new perspective. Not work so many nights. Take a trip to visit our son in Florida. It feels good.
Sunday, August 31, 2014
Saturday, August 30, 2014
Chapter 2 Down the rabbit hole I go
We went home after our appointment - I was a little dazed and confused. It was so much information to take in - and so different then what I expected to hear. My husband seemed oblivious to the diagnosis - said it sounded complicated - I heard words like "degenerative brain disease", "progression"; "no treatment"; that it wasn't the car accident at all; it probably started back further; probably has been happening for thirteen years; see an attorney about end of life instructions; see a financial planner about probable long term care in the future; everything swirling around in my brain. The MRI pictures were so bizarre - to see his in comparison with a "normal" 53 year old brain, even a normal 86 year old brain - with my husband's in between - there were big empty places! Places that looked like chasms! What???? He wasn't going to improve at all - he wasn't going to stay as he was - he was going to get worse. And I had to think about a whole new future for us.
I immediately got on line and started googling - hoping to find something about this disease - something that sounded like it fit my husband's actions over the years - almost hoping that it just could not be - they'd made a mistake - but I had to go back to work for about an hour, which somehow felt like a better alternative then sitting at home with him, watching him watch a game show. I needed to "tell" someone - the whole idea of it was so foreign to me, I had to say it out loud to someone else to really believe it. There were no tears on my part - it was more just trying to wrap my head around the idea. What did it all mean? How should I feel? How do I tell my kids?
When I got home from work, I first talked with my oldest son - he's 32 and living with us right now. He was a little surprised - we both agreed it was good to know what's going on. There was some relief to know that all the frustrating things over the years, the feelings that he didn't care - none of that was his fault - it was the disease. He has had no sense of anything being wrong. He is content with his life as it is, only because he doesn't realize what he is missing - he'll never realize it. And it seems that is a blessing for my husband - it seems it would be much harder to deal with his tears and distress over what the future might hold for him. He doesn't really seem to get it. There is grief that all I thought we'd do together in the future won't happen. Or at least it won't happen how I've always pictured it. Our "best days" are behind us - far far behind us. It is hard to put aside the hope that things would get better. Interspersed in all that is the niggling idea that maybe they are wrong ..... I guess that is what I hope for.
I did more research that night, and texted my daughter to stop by the next day after work so I could tell her about the results. That conversation was harder - she began to cry, saying she felt so badly for me. I explained to her that my husband hadn't really been a witness to my life for many years. Part of his disease is a sort of apathy toward others. I would be okay. Along with my son, we talked about having a different perspective now, as caregivers. That changes everything. Instead of frustration over his actions or what he says or doesn't say, we will try harder to make moments count, knowing that today is his best day for the rest of his life. We will all be in this together. I emailed my youngest son about the results - he is in the service and only reachable by email.
When I read about symptoms of this disease, it seems to line right up with so much of what I've experienced over the last ten years. I would guess he has the behavior variant type of FTD. But I don't know! I've thought of many questions since we met with Dr. B. Does his MRI look really bad? Does it look like early stages? Moderate stage? Getting toward end stage? Since this affects hearing, is it at all responsible for his hearing loss? Is it what gives him his shuffling walk? Or is that more likely his arthritis? Is the pursed breathing a part of this? He's just started to smack his lips occasionally - is that part of it? I'm starting to wonder if I'm looking for symptoms I've read about, or am I taking symptoms and trying to find them somewhere in all the articles! Most alarming to me is the prognosis of an average 5 - 8 years living with this disease, but can range from 2 - 20 years.....so does that mean he only has 6 or 7 years left? That just doesn't seem possible. I mean - he's not that bad. If I stop and think of how he was 15 years ago and how he is today - just a snapshot in time - there is a huge difference. If you met my husband today, he would say hello in Spanish, ask if you knew Spanish, and probably finish with "Ay Caramba!" or "Hasta la vista, baby!" He'd be holding your hand the whole time. You would think he's a sweetheart, a really nice guy, and you'd probably think there was nothing wrong. It is only through further association you would pick up on what this disease has done to him. Sometimes I would get frustrated with comments like "oh, he's fine" or "you're being too critical." I did not want to sound like a complaining wife - I just knew something wasn't right.
We love this man - we had SO much fun in our life together - and I couldn't have chosen a better father for our children. We all miss who he was, the parts of him that we don't get to see anymore - and we'll be walking with him through what comes next. We'll find the moments that are good somewhere in the unknown that is to come. We will love him no matter what, as without him, none of us would be who we are today.
Enough for now - I'm getting teary eyes. They just seem to bubble up some times.
I immediately got on line and started googling - hoping to find something about this disease - something that sounded like it fit my husband's actions over the years - almost hoping that it just could not be - they'd made a mistake - but I had to go back to work for about an hour, which somehow felt like a better alternative then sitting at home with him, watching him watch a game show. I needed to "tell" someone - the whole idea of it was so foreign to me, I had to say it out loud to someone else to really believe it. There were no tears on my part - it was more just trying to wrap my head around the idea. What did it all mean? How should I feel? How do I tell my kids?
When I got home from work, I first talked with my oldest son - he's 32 and living with us right now. He was a little surprised - we both agreed it was good to know what's going on. There was some relief to know that all the frustrating things over the years, the feelings that he didn't care - none of that was his fault - it was the disease. He has had no sense of anything being wrong. He is content with his life as it is, only because he doesn't realize what he is missing - he'll never realize it. And it seems that is a blessing for my husband - it seems it would be much harder to deal with his tears and distress over what the future might hold for him. He doesn't really seem to get it. There is grief that all I thought we'd do together in the future won't happen. Or at least it won't happen how I've always pictured it. Our "best days" are behind us - far far behind us. It is hard to put aside the hope that things would get better. Interspersed in all that is the niggling idea that maybe they are wrong ..... I guess that is what I hope for.
I did more research that night, and texted my daughter to stop by the next day after work so I could tell her about the results. That conversation was harder - she began to cry, saying she felt so badly for me. I explained to her that my husband hadn't really been a witness to my life for many years. Part of his disease is a sort of apathy toward others. I would be okay. Along with my son, we talked about having a different perspective now, as caregivers. That changes everything. Instead of frustration over his actions or what he says or doesn't say, we will try harder to make moments count, knowing that today is his best day for the rest of his life. We will all be in this together. I emailed my youngest son about the results - he is in the service and only reachable by email.
When I read about symptoms of this disease, it seems to line right up with so much of what I've experienced over the last ten years. I would guess he has the behavior variant type of FTD. But I don't know! I've thought of many questions since we met with Dr. B. Does his MRI look really bad? Does it look like early stages? Moderate stage? Getting toward end stage? Since this affects hearing, is it at all responsible for his hearing loss? Is it what gives him his shuffling walk? Or is that more likely his arthritis? Is the pursed breathing a part of this? He's just started to smack his lips occasionally - is that part of it? I'm starting to wonder if I'm looking for symptoms I've read about, or am I taking symptoms and trying to find them somewhere in all the articles! Most alarming to me is the prognosis of an average 5 - 8 years living with this disease, but can range from 2 - 20 years.....so does that mean he only has 6 or 7 years left? That just doesn't seem possible. I mean - he's not that bad. If I stop and think of how he was 15 years ago and how he is today - just a snapshot in time - there is a huge difference. If you met my husband today, he would say hello in Spanish, ask if you knew Spanish, and probably finish with "Ay Caramba!" or "Hasta la vista, baby!" He'd be holding your hand the whole time. You would think he's a sweetheart, a really nice guy, and you'd probably think there was nothing wrong. It is only through further association you would pick up on what this disease has done to him. Sometimes I would get frustrated with comments like "oh, he's fine" or "you're being too critical." I did not want to sound like a complaining wife - I just knew something wasn't right.
We love this man - we had SO much fun in our life together - and I couldn't have chosen a better father for our children. We all miss who he was, the parts of him that we don't get to see anymore - and we'll be walking with him through what comes next. We'll find the moments that are good somewhere in the unknown that is to come. We will love him no matter what, as without him, none of us would be who we are today.
Enough for now - I'm getting teary eyes. They just seem to bubble up some times.
Chapter 1 Seeing the White Rabbit
It began about 13 years ago, in 2001. Something felt different. My husband didn't see it coming, but I did. In 2002, at the age of 51, he was given the option to resign or be fired from a position he held for eighteen years as a case worker. He was blindsided. But he quickly found another job in the social services field, only to be let go three months later. He couldn't find a job after that - how do you put that on a resume? He worked a seasonal job at Target as a cashier - that seemed to be all he could get. Then came the car accident in February 2003 - he was T-boned after skidding on ice - the "jaws of life" were used to cut him from the car. He spent eleven days in the hospital - broken ribs, bruised spleen, punctured lung, nerve damage in his left arm. After being unable to work for two months, Target wasn't interested in hiring him back - he'd been "too slow". He found a job at a group home, working during the day with the mentally disabled, and quit that after three months, finding a much better job doing casework again, only to be referred to Voc Rehab after two or three months - a kind of "save your job" evaluation of his hearing - turned out he did need hearing aids, and went back to work, only to be let go four months later. After that, he had a series of jobs at nursing homes- he'd make a poor judgment call and be let go after a few months, time and time again. He did home health aide work - with three or four different companies - but many clients didn't want him back after he'd worked with them a few times. And so it continued for the next few years. For the last several years, he's worked a couple of hours a week with one client who really likes him.
I blamed the car accident. I was certain there must have been trauma to the brain even though there was no obvious head injury. In 2006, I had him contact Voc Rehab to see if they could help him - get some testing done - there had to be a reason that things were just going so badly. He was a college graduate! He'd run a day treatment program years ago in another state when we were first married! He'd supervised nurses and licensed social workers! He met with neighbors concerned about the location of the program in a residential setting! It had to be the car accident. The changes I saw - the withdrawal from family - the lack of interest in what was going on in his kids' lives - the lack of interest in what I was feeling about all this - the stress - he didn't get it - and it seemed he just didn't care. In the mean time, his hearing declined. And he didn't seem to be able to do things he used to be able to do. The neuro psych testing showed some deficit areas, but nothing conclusive - he should be able to find a job. THEY JUST DIDN'T GET IT! Something was wrong!
Our family life was very different - my children were 15, 18, and 20 when my husband lost his job. He was very lost after losing the second job, and they couldn't figure out what was going on either. He was a wonderful, gentle man, kind and loving and lots of fun. When they were young, he would sing them barbershop songs every night when they went to bed, he took them to the pool all the time in the summer - we'd go camping, take road trips out west,
I blamed the car accident. I was certain there must have been trauma to the brain even though there was no obvious head injury. In 2006, I had him contact Voc Rehab to see if they could help him - get some testing done - there had to be a reason that things were just going so badly. He was a college graduate! He'd run a day treatment program years ago in another state when we were first married! He'd supervised nurses and licensed social workers! He met with neighbors concerned about the location of the program in a residential setting! It had to be the car accident. The changes I saw - the withdrawal from family - the lack of interest in what was going on in his kids' lives - the lack of interest in what I was feeling about all this - the stress - he didn't get it - and it seemed he just didn't care. In the mean time, his hearing declined. And he didn't seem to be able to do things he used to be able to do. The neuro psych testing showed some deficit areas, but nothing conclusive - he should be able to find a job. THEY JUST DIDN'T GET IT! Something was wrong!
Our family life was very different - my children were 15, 18, and 20 when my husband lost his job. He was very lost after losing the second job, and they couldn't figure out what was going on either. He was a wonderful, gentle man, kind and loving and lots of fun. When they were young, he would sing them barbershop songs every night when they went to bed, he took them to the pool all the time in the summer - we'd go camping, take road trips out west,
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