So, after four years of a diagnosis of FTD, with symptoms beginning before 2002, we now have a new diagnosis. Central nervous system autoimmune disorder, or inflammatory disorder. In particular his condition is characterized by the following antibodies: 1) alpha-3 ganglionic AChR antibody disorder 2) Rheumatoid factor 3) speckled antinuclear antibody and 4) SS-A antibody. These antibodies were detected through blood tests done by our new neurologist. Interestingly, when I research these antibodies, they usually indicate something specific like rheumatoid arthritis - Dave doesn't have this - or cancer - Dave had CT scans of everything and no evidence of cancer - lupus - nope, no symptoms of lupus - MS - nope - no lesions showing in his MRI's - Sjogren's syndrome - nope! Dave's symptoms have always fallen right in line with FTD - textbook - except his progression has been very slow, and his atrophy is the frontal and temporal lobes. In summary, he has an autoimmune CNS disorder creating a number of antibodies that have attacked his brain causing his cognitive symptoms and brain atrophy. Since he has gone a long time without severe changes, it is likely he will just continue to smolder along and it is not likely he will develop a diļ¬erent syndrome or get a lot worse over time, according to our doctor.
I'm still trying to wrap my mind around this - the first couple of days after our doctor visit, I spent a lot of time crying. Because, selfishly, all I could think was how can I do this for thirty more years? But after letting it all settle in and percolate, I decided to try to look at this positively - it's not terminal. I have already stopped waiting for a big shoe to drop, stopped looking for a change each and every day, waiting for the incontinence to kick in, wondering how much longer I'll be able to work. So that's good.....the sense of urgency has receded. He is starting on Methotrexate - it's often given to treat rheumatoid arthritis - it's actually part of the armory for chemo in treating cancer. It's an immunosuppressant. Scary. It might help. The sense is he's had this for so long, there will be no reversing things. But what do we have to lose, right?
I also found this information tonight - "neurologists at Mayo Clinic in Rochester, Minnesota, have found that patients whose symptoms mimic those of neurodegenerative dementias can actually have an autoimmune cause for their conditions. Although autoimmune dementia responds to immunotherapy, the disease often goes untreated because of misdiagnosis as a neurodegenerative or psychiatric condition." "It can be devastating for patients to be labeled with a neurodegenerative disease but actually have an immune-mediated dementia, because they're missing out on a treatment that can reverse their symptoms," says Eoin P. Flanagan, M.B., B.Ch., a consultant in Neurology at Mayo Clinic in Rochester, Minnesota. "If treatment is delayed, patients tend not to respond as well. It's important to recognize this condition because you might miss your opportunity for treatment." Hmmmm. So if this had been caught awhile ago, it could have been reversed? That's depressing.
Plus, how many others have received this diagnosis like we did and the right blood tests weren't done? Oh well. It's the practice of medicine. Most research I find are that symptoms usually come on much much faster for autoimmune disorder and include headaches and some other things that Dave has never had a problem with.
In researching the Methotrexate, I found several articles indicating it might cause "foggy brain" - oh great! One thread indicated neurologists who believe it might cause FTD, and rheumatologists saying it would not happen that way. UGH!
I'm thinking of getting a second opinion at the Cleveland Clinic. I'm going to let it percolate for awhile. It has already gotten so complicated and convoluted!
So I may be closing up my blog soon, or change the name, or something! I guess I should wait til I see about a second opinion. But if going through this helps one person ask for the right blood tests to make sure there isn't an autoimmune disorder, it will have been worth it all.
Spring has finally sprung! A beautiful day today. Can't wait for a few more. It lifts my spirit so much, and helps me get through the day. And do it all again tomorrow.
Friday, April 13, 2018
Sunday, April 8, 2018
Chapter 49 "There were doors all round the hall, but they were all locked, and when Alice had been all the way down one side and up the other, trying every door, she walked sadly down the middle, wondering how she was ever to get out again."
Haven't written for awhile. It's been a tough couple of months. I know I am in a rut. I feel I'm losing myself to this disease. Something I've sworn wouldn't happen. But some days it is really tough. My husband and I have been married for 39 years next month. Most of those have been wonderful. But the last sixteen have been tough! Do I still love him? I think so. It's just so different. I'm a caregiver now, and he's the person I take care of. There isn't companionship or affection. There isn't interest in my life. There isn't appreciation of what I do. In fact, there's no comprehension that anything is missing from our life or that things are different. We were talking tonight about his appointment tomorrow morning with the neurologist. This is the third visit to wrap up all the tests and figure out what's going on. I asked him if there's any questions he has for the doctor. He wants to know if he has FTD, because if he doesn't, he wants to stop wearing the wristlet he has that says "FTD: Fight this disease" - ??? No one is making him wear it. He put it on three years ago and has worn it every day since. He firmly believes that nothing is wrong with him "yet" - and it doesn't matter what I say - he has left the conversation almost before it began. So do I love him? I love the life we had, the family life we created together - I love all the memories and the person he was. But it is hard to wrap my head around this love - it's not like loving a parent; not like loving a child; not like loving a partner or friend. There is no reciprocation or demonstration of love. So it's weird. I will always do my best to take care of him as best I can, and keep him content. But I feel so lonely sometimes that it makes me mad!
The loneliness sucks. Some days I call my family or friends, and no one answers or is available, and I just want to cry. Sometimes I'm afraid they see who it is and don't want to answer. But I'm not calling to complain or cry. I just want to hear about someone else's life, or talk about the weather, or some tv show, or politics even! I need to hear about someone's more normal life and get to pretend mine is normal. I don't want people calling and saying, "so how are you doing?" in a serious, solemn voice. I want to hear an enthusiastic, "SO HOW YOU DOIN'?" with a smile coming through! I want my phone ringing because my kids want to talk to me! Or someone wants to talk to ME, not the caregiver. Sounds silly, I know. My kids are great, but their lives have expanded and are full, right when mine feels pretty empty. I'm so happy for them, but at the same time I hate it. I hate that I get tired of being the one to call, and sometimes it's days before I get a call back, and I end up making some smart remarks. It is so PETTY! Because no one else is responsible for my happiness other than me.
This is the time when Dave and I should be back to having fun, doing things together, making plans - partners in crime. Instead I am a caregiver. My time once I leave work is pretty much dictated by what Dave needs. I know I'm allowed to do my own thing also, but I feel quite guilty. And I feel MAD! I want a witness to my life back! I want a partner in crime! I want someone to help me plan the patio in the back yard, and pick the paint color for the house, someone who really cares about it and can offer a thoughtful opinion. I want my best friend back to talk to, to worry with, to laugh with, to play cards with, to care if I had a good day.
I know I need to get in and talk with someone. Get some balance. Because, as I always say, I know it will only get worse, and that for now, my life is pretty great. But there are days or weeks when the FTD is getting me too. It truly is a family disease. Nothing big ahead for us - so I'm back to making sure I truly understand the process of qualifying for Medicaid. Keeping my once a month lunch with my FTD wives club! I always look forward to that.
I'm hoping to get some clarification about the whole FTD vs encephalopathy tomorrow. I've realized it doesn't matter what this neurologist determines. What I struggle with is what people who's spouses have FTD struggle with. He has all the symptoms of FTD, we have all the struggles of FTD. And it will end the same way, no matter what the diagnosis. I have a feeling it'll be dual - FTD and something else. We'll see. I need some doors to open for me. Actually, I just need to figure out how to open them. And I will. Come hell or highwater. Because I don't think I'll last long stuck where I am!
The loneliness sucks. Some days I call my family or friends, and no one answers or is available, and I just want to cry. Sometimes I'm afraid they see who it is and don't want to answer. But I'm not calling to complain or cry. I just want to hear about someone else's life, or talk about the weather, or some tv show, or politics even! I need to hear about someone's more normal life and get to pretend mine is normal. I don't want people calling and saying, "so how are you doing?" in a serious, solemn voice. I want to hear an enthusiastic, "SO HOW YOU DOIN'?" with a smile coming through! I want my phone ringing because my kids want to talk to me! Or someone wants to talk to ME, not the caregiver. Sounds silly, I know. My kids are great, but their lives have expanded and are full, right when mine feels pretty empty. I'm so happy for them, but at the same time I hate it. I hate that I get tired of being the one to call, and sometimes it's days before I get a call back, and I end up making some smart remarks. It is so PETTY! Because no one else is responsible for my happiness other than me.
This is the time when Dave and I should be back to having fun, doing things together, making plans - partners in crime. Instead I am a caregiver. My time once I leave work is pretty much dictated by what Dave needs. I know I'm allowed to do my own thing also, but I feel quite guilty. And I feel MAD! I want a witness to my life back! I want a partner in crime! I want someone to help me plan the patio in the back yard, and pick the paint color for the house, someone who really cares about it and can offer a thoughtful opinion. I want my best friend back to talk to, to worry with, to laugh with, to play cards with, to care if I had a good day.
I know I need to get in and talk with someone. Get some balance. Because, as I always say, I know it will only get worse, and that for now, my life is pretty great. But there are days or weeks when the FTD is getting me too. It truly is a family disease. Nothing big ahead for us - so I'm back to making sure I truly understand the process of qualifying for Medicaid. Keeping my once a month lunch with my FTD wives club! I always look forward to that.
I'm hoping to get some clarification about the whole FTD vs encephalopathy tomorrow. I've realized it doesn't matter what this neurologist determines. What I struggle with is what people who's spouses have FTD struggle with. He has all the symptoms of FTD, we have all the struggles of FTD. And it will end the same way, no matter what the diagnosis. I have a feeling it'll be dual - FTD and something else. We'll see. I need some doors to open for me. Actually, I just need to figure out how to open them. And I will. Come hell or highwater. Because I don't think I'll last long stuck where I am!
Sunday, February 4, 2018
Chapter 48 "Curiouser and curiouser....."
Well, looks like paraneoplastic syndrome has been ruled out - no sign of cancer in the CT scans or the PSA test, or any of the other blood work ordered by the oncologist. Some relief, but more questions now. Curiouser and curiouser!
I've found some interesting research articles on autoimmune encephalopathies....but it all seems pretty squishy - many novel forms of it associated with antibodies, and overlap of syndromes. No clear definition of diagnosis. We don't see the neurologist again til April, and I know he's an expert in his field. I worry about questioning too much and offending him. While the study of these disorders has revealed how antibodies might alter memory, behavior, and cognition, the more definitive symptoms seem to be headache, seizures, and sleep dysfunction. None of these three apply to Dave. He has never been a person to have headaches. He seems to sleep solidly at least nine hours at night, and dozes during the day. He's had two seizures in his life - and they were while he was in the emergency room with head trauma after a fall on ice over three years ago - he had those within minutes of each other, and hasn't had any since, despite other falls. AAARRRRGHH! Why can't anything be clear and easy? Feels like a blurry picture right now, like a Polaroid picture not developing like it's supposed to.
Does it really matter what it is? FTD? Autoimmune encephalopathy? Or something else? One - I can hardly get the words "autoimmune encephalopathy" out - it's a tongue twister. Two - AE is relatively "new" - progression? prognosis? Can't locate much on it, because onset seems to be significant enough that it is caught early and reversed.. Three - THE SYMPTOMS DON'T SEEM TO LINE UP WITH DAVE'S SYMPTOMS! Perhaps Dave's progression has not been as fast as some, obviously changing the prognosis a little bit - Dave has always been atypical - I wouldn't have married him if he wasn't! But FTD varies a lot. I know that to be true. I also know that beginning fifteen years ago, he started changing. Loss of filter; loss of empathy; unusual behaviors; loss of interest in others; loss of job after job due to gradual cognitive decline and loss of executive function. He hasn't been able to smell anything for years - his gait is slow and shuffling. The last year, he's lost a lot of memories and gotten more snappy with every one. The long term memory loss is the most painful to see, and short term is frustrating. In the three and a half years since we finally got a diagnosis, there has been decline. Nothing major - no incontinence, nothing big and obvious, but subtle and progressive. So what's next?
I'll continue to research, continue to wait for the other shoe to drop - because I know it will happen one day. Continue to try to balance this life we are living. This disease is beginning to take its toll on me - the last few months at work I feel I'm making mistakes, forgetting things - it's CRAZY! I don't make mistakes! I'm feeling more trapped on a daily basis, losing my ability to forge ahead, to be resilient, to distract. Losing myself. Need to snap out of it again. Which I will. Hopefully with spring on its way, and the days getting longer, it will happen naturally without too much effort. Because I'm not sure I have it in me to make the effort. Hopefully planning to go to California in March and see our grandson. Once the dates are firmed up and the tickets paid for, I'm sure I'll find a new pep in my step. And yes, my life is good. Things don't have to be perfect to be wonderful. Right?
I've found some interesting research articles on autoimmune encephalopathies....but it all seems pretty squishy - many novel forms of it associated with antibodies, and overlap of syndromes. No clear definition of diagnosis. We don't see the neurologist again til April, and I know he's an expert in his field. I worry about questioning too much and offending him. While the study of these disorders has revealed how antibodies might alter memory, behavior, and cognition, the more definitive symptoms seem to be headache, seizures, and sleep dysfunction. None of these three apply to Dave. He has never been a person to have headaches. He seems to sleep solidly at least nine hours at night, and dozes during the day. He's had two seizures in his life - and they were while he was in the emergency room with head trauma after a fall on ice over three years ago - he had those within minutes of each other, and hasn't had any since, despite other falls. AAARRRRGHH! Why can't anything be clear and easy? Feels like a blurry picture right now, like a Polaroid picture not developing like it's supposed to.
Does it really matter what it is? FTD? Autoimmune encephalopathy? Or something else? One - I can hardly get the words "autoimmune encephalopathy" out - it's a tongue twister. Two - AE is relatively "new" - progression? prognosis? Can't locate much on it, because onset seems to be significant enough that it is caught early and reversed.. Three - THE SYMPTOMS DON'T SEEM TO LINE UP WITH DAVE'S SYMPTOMS! Perhaps Dave's progression has not been as fast as some, obviously changing the prognosis a little bit - Dave has always been atypical - I wouldn't have married him if he wasn't! But FTD varies a lot. I know that to be true. I also know that beginning fifteen years ago, he started changing. Loss of filter; loss of empathy; unusual behaviors; loss of interest in others; loss of job after job due to gradual cognitive decline and loss of executive function. He hasn't been able to smell anything for years - his gait is slow and shuffling. The last year, he's lost a lot of memories and gotten more snappy with every one. The long term memory loss is the most painful to see, and short term is frustrating. In the three and a half years since we finally got a diagnosis, there has been decline. Nothing major - no incontinence, nothing big and obvious, but subtle and progressive. So what's next?
I'll continue to research, continue to wait for the other shoe to drop - because I know it will happen one day. Continue to try to balance this life we are living. This disease is beginning to take its toll on me - the last few months at work I feel I'm making mistakes, forgetting things - it's CRAZY! I don't make mistakes! I'm feeling more trapped on a daily basis, losing my ability to forge ahead, to be resilient, to distract. Losing myself. Need to snap out of it again. Which I will. Hopefully with spring on its way, and the days getting longer, it will happen naturally without too much effort. Because I'm not sure I have it in me to make the effort. Hopefully planning to go to California in March and see our grandson. Once the dates are firmed up and the tickets paid for, I'm sure I'll find a new pep in my step. And yes, my life is good. Things don't have to be perfect to be wonderful. Right?
Sunday, December 31, 2017
Chapter 47 "But it’s no use now,” thought poor Alice, “to pretend to be two people! Why, there’s hardly enough of me left to make one respectable person!”
Oh my goodness Where has another year gone? They are starting to blend together. But it's a new year beginning tomorrow. Another fresh start. Another chance to try to do it all over again. Actually, to try to do it better, different. Not all over again. This year I feel I lost myself in this disease. I let it get me down, I let it chip away at my patience, my optimism. Despite many blessings over the year - new home, beautiful wedding of my daughter, my husband's continued plateau, sweetest grandchild on the face of the earth - I lose sight too easily of all the good simple daily blessings and choose instead to wallow in self pity, with millions of tiny violins playing a mournful tune! Why do I continue to make this choice instead of another? And in doing so, dig the hole deeper and make myself feel worse? Poor me! I realized this year what a B-I-T-C-H I can be. Not a good measure of a year.
So here goes! I'm going to try again to make better choices for myself - to fight to stay positive. Not sure how I'll do it, but I'm going to try again. Otherwise this disease - FTD or whatever disease it is that my husband ends up getting diagnosed with when all the testing is done - will keep taking - keep winning. It has taken so much already.
More doctor visits coming up - we met with an oncologist a couple of weeks ago - got more blood tests, have CT scans next week, and meet again the middle of January. The test result that has taken us down this road was ACHR Ganglionic Neuronal AB - Dave's value was high. To quote from the test results, this profile would support autoimmune encephalopathy. There is a 30% predictive value for a cancer diagnosis. So this is the doctors doing their due diligence. Dave will have CT scans of his abdomen and pelvic area. This is to check out this paraneoplastic syndrome, or hidden cancer. We will wait and see. There is still the question of FTD vs autoimmune encephalopathy. I've been researching that. It seems this mistake can be made often, but the autoimmune encephalopathy usually has a sudden onset - first thing that doesn't square with Dave's history. The onset is usually severe enough that the diagnosis is pretty quick, not fifteen years later like ours was. There are also some studies that seem to indicate that there is some question as to whether FTD can develop first and a part of the disease might cause the autoimmune disorder. Right now I don't know enough. Still trying to research it. There is so much that is spot on with a diagnosis of FTD. I'm going to ask about a spinal tap. It seems there might be something more definitive to come out of that. When I look at symptoms of autoimmune encephalopathy, they don't match up - at least not like FTD does. So I'll have to make some notes,, see what the oncologist has to say, and go to the next appointment with the neurologist armed with questions. Fun, fun, fun.
Sent an email to an old high school friend tonight - I happened to pass a big empty parking lot this evening and saw a car doing donut holes on the slippery pavement - the car was doing 360's, whirling around - remembered doing that once in high school with him. Bad behavior - fun - risky - but it made me smile. Reminded me of a feeling of freedom - something I'm missing. Another thing to figure out how to find. I sometimes feel I need to be very very careful of all I do - if something happens to me, Dave would be in trouble. BIG trouble. So, it'll be a new year. Going to try one thing each day to make ME smile. But do it cautiously and carefully! And try to keep myself intact and of sane mind!
2018, bring it on!
So here goes! I'm going to try again to make better choices for myself - to fight to stay positive. Not sure how I'll do it, but I'm going to try again. Otherwise this disease - FTD or whatever disease it is that my husband ends up getting diagnosed with when all the testing is done - will keep taking - keep winning. It has taken so much already.
More doctor visits coming up - we met with an oncologist a couple of weeks ago - got more blood tests, have CT scans next week, and meet again the middle of January. The test result that has taken us down this road was ACHR Ganglionic Neuronal AB - Dave's value was high. To quote from the test results, this profile would support autoimmune encephalopathy. There is a 30% predictive value for a cancer diagnosis. So this is the doctors doing their due diligence. Dave will have CT scans of his abdomen and pelvic area. This is to check out this paraneoplastic syndrome, or hidden cancer. We will wait and see. There is still the question of FTD vs autoimmune encephalopathy. I've been researching that. It seems this mistake can be made often, but the autoimmune encephalopathy usually has a sudden onset - first thing that doesn't square with Dave's history. The onset is usually severe enough that the diagnosis is pretty quick, not fifteen years later like ours was. There are also some studies that seem to indicate that there is some question as to whether FTD can develop first and a part of the disease might cause the autoimmune disorder. Right now I don't know enough. Still trying to research it. There is so much that is spot on with a diagnosis of FTD. I'm going to ask about a spinal tap. It seems there might be something more definitive to come out of that. When I look at symptoms of autoimmune encephalopathy, they don't match up - at least not like FTD does. So I'll have to make some notes,, see what the oncologist has to say, and go to the next appointment with the neurologist armed with questions. Fun, fun, fun.
Sent an email to an old high school friend tonight - I happened to pass a big empty parking lot this evening and saw a car doing donut holes on the slippery pavement - the car was doing 360's, whirling around - remembered doing that once in high school with him. Bad behavior - fun - risky - but it made me smile. Reminded me of a feeling of freedom - something I'm missing. Another thing to figure out how to find. I sometimes feel I need to be very very careful of all I do - if something happens to me, Dave would be in trouble. BIG trouble. So, it'll be a new year. Going to try one thing each day to make ME smile. But do it cautiously and carefully! And try to keep myself intact and of sane mind!
2018, bring it on!
Monday, December 11, 2017
Chapter 46 "It would be so nice if something made sense for a change."
What if it's not FTD???
Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues. Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning! Are you kidding??? I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN! But now I feel I'm on my way out and freefalling! There's nothing definitive yet. How frustrating!
We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer". What a roller coaster! What do I do now? A central nervous system inflammatory condition. That's what we're looking at now. I don't know what's next with regard to a definitive diagnosis. I don't know anything about progression, prognosis, nothing! I don't know what to do next! I don't know if there's support out there for an unnamed disease!
He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors. But his progression has been so so slow unlike so many others. It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD? I wonder if we're on the right track looking at something else?
One comment the doctor made was that he may not get drastically much worse. Which is good, right? But at the same time, that means this is my life for a very long time. I'm having a very hard time wrapping my brain around it. It's a different journey. I guess in part because we don't have anything definitive yet. I don't know. I don't deal well with all this uncertainty!
So, I need to think on all this, cogitate a little. Maybe take up drinking. I don't know. Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.
Curiouser and curiouser. Do I change the name of my blog if we end up with a different diagnosis? This all feels so weird. It's not like finding out you don't have cancer or something....it could be more bleak. I have to come up with a different life plan! No impending demise. We'll see.
Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did. This year has been enlightening in realizing some things just don't matter to him. This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way. FTD is much simpler to say! Right?
Santa, please bring me a shiny pair of those rose colored glasses for Christmas!
Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues. Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning! Are you kidding??? I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN! But now I feel I'm on my way out and freefalling! There's nothing definitive yet. How frustrating!
We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer". What a roller coaster! What do I do now? A central nervous system inflammatory condition. That's what we're looking at now. I don't know what's next with regard to a definitive diagnosis. I don't know anything about progression, prognosis, nothing! I don't know what to do next! I don't know if there's support out there for an unnamed disease!
He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors. But his progression has been so so slow unlike so many others. It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD? I wonder if we're on the right track looking at something else?
One comment the doctor made was that he may not get drastically much worse. Which is good, right? But at the same time, that means this is my life for a very long time. I'm having a very hard time wrapping my brain around it. It's a different journey. I guess in part because we don't have anything definitive yet. I don't know. I don't deal well with all this uncertainty!
So, I need to think on all this, cogitate a little. Maybe take up drinking. I don't know. Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.
Curiouser and curiouser. Do I change the name of my blog if we end up with a different diagnosis? This all feels so weird. It's not like finding out you don't have cancer or something....it could be more bleak. I have to come up with a different life plan! No impending demise. We'll see.
Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did. This year has been enlightening in realizing some things just don't matter to him. This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way. FTD is much simpler to say! Right?
Santa, please bring me a shiny pair of those rose colored glasses for Christmas!
Wednesday, October 25, 2017
Chapter 45 Fatalism
So, it's been awhile. I cancelled the pity party - made plans for a four day weekend and took a road trip with a great traveling companion up to see my brother in upstate New York and his six lane bowling alley he's renovated and opening up. It was just what I needed - the only kind of decision I had to make was whether to sit on his front porch, or back porch. Nice! There's something about leaving my situation behind (which I know I am very fortunate to still be able to do with not too much planning since my son lives with me), being on the road for eight or nine hours, stopping when I choose to stop, not being at someone's beck and call - what a relief. And with the natural catastrophes happening all around the United States - hurricanes, fires - I was able to get back to realizing I have a lot to be thankful for - simple things like a roof over my head, a job, food to eat, and family. I feel realigned - ready to face this life I'm living.
I had the time to think about what makes me most crazy about have this disease as a member of my family. It's that feeling of having no control over my future. I don't feel I can make long term plans, set goals, have any ambitions for the future. In any normal every day life (whatever normal means anymore), we don't know the future - we can't know the future - but we can assume life will go on as it is, unless we decide to make a change, and we can plan for a year or two or three down the line. Since FTD came to live with us, I have a glimpse of my future, and it's not pretty. So one would think I'd put everything into living for every moment I do have, right? But I feel trapped - don't want to unnecessarily spend money I may need, want to save any paid time off I've earned at work in case things all of sudden pick up speed and I need to be off work to do more personal caregiving. And yet, time's a-wasting! But....I have to be cautious! I have to save more! I need to be able to support myself when Dave's disease beings to progress! Because that WILL happen, right? This can't go on forever, right? When we first received the diagnosis, we were told six years was the average life span after diagnosis. But it doesn't seem like Dave has progressed significantly at all. I have met and talked with others who have had diagnoses in the last year or two, and their husbands have progressed so much faster than Dave. We are stuck in this middle ground where enough has happened to change my husband permanently, and my life permanently - but nothing big has happened with his disease for awhile now. His progression is very atypical - probably started about 18 years ago - so when he was 49 - and while yes, things have progressed, the speed has not been near the norm in any way. So maybe he'll be 90 when he dies! Which means I have 20 plus more years of this! I've tried to look at this all from a number of angles to see how I can plan, what I can plan. I end up more confused. So I'm just going to keep mulling it over and see what comes my way.
We have seen the new neurologist, Dr. Scharre, who is an expert in his field. He has experience with FTD. He is doing his own new assessment of Dave, and after our first visit with him for about an hour and a half, he's not convinced yet that it is FTD. He hadn't seen the MRI films yet, so when we see him again in two weeks for some more testing and evaluation, he may have changed his mind. He did state if it is FTD, that Dave's is very atypical - yup - I knew that! He had some cognitive testing done with Dave in another office while he asked me some questions and took some history. He is doing a number of blood tests to rule out some things. I still feel once he sees the MRI where there is significant atrophy, that he'll confirm the diagnosis. Or - maybe he'll have other ideas. Maybe it's some other form of dementia. This feels like the right thing to do - have this second evaluation - and a confirmation is expected. But who knows?
There are times when I wonder what if my husband was always like this? Maybe he was always not so smart, and often not appropriate. It has been so long, I'm not sure any more. I contacted the county agency he worked at for 18 years before being fired in 2002 to see if I could find out exactly why he was fired, and if performance had been declining for awhile before then. They were very helpful, and since it's a county agency, personnel records are a matter of public record. So I recently received copies of his performance evaluations and disciplinary actions. Glowing reviews the first fifteen years of his job, promotion to a lead position. Then a lapse in judgement; some notations of not following directions; a year or so later, a two week suspension for a BIG lapse in judgement; talking in Spanish to people when he knew they didn't speak Spanish; inability to read cues from others' comments or behavior. Yup - that sounds like the beginning of it all. What was great and hard at the same time was to read his responses to his early evaluations. They were so well written; so well thought out; so obvious that he cared about his work with kids and knew what he was doing. That's the man I married! That's the man I knew for the first twenty years of our marriage! Reading his writings made me miss what might have been for the last fifteen to seventeen years if this disease hadn't paid us a visit. I was reminded of how much we had - how much fun, how much love. It was good. But it was sad.
So I'm in a good place for now. Making efforts to go somewhere - to the river for a walk - on a drive to southern Ohio to see the fall leaves changing color - me getting on the road, Dave getting out of the house. My first effort was a success - a win-win - I got to go some place I wanted to go - Dave went along. His enthusiasm was short lived, but that's ok. We just headed home before I would have wanted to, but we can't always get what we want now, can we? I can hang in there, keep trying something new to see what works for now - as things WILL change. I can have some control over today and tomorrow for now - but not much past that. Still working on finding that balance of living for now and planning for the future, without stressing out over life as it is and life as it may be. That's my challenge for now.
In the mean time, happy fall! My favorite time of year. The holidays will be upon us - I plan to be realistic about expectations, thankful for what I have, and hopeful for the future!
I had the time to think about what makes me most crazy about have this disease as a member of my family. It's that feeling of having no control over my future. I don't feel I can make long term plans, set goals, have any ambitions for the future. In any normal every day life (whatever normal means anymore), we don't know the future - we can't know the future - but we can assume life will go on as it is, unless we decide to make a change, and we can plan for a year or two or three down the line. Since FTD came to live with us, I have a glimpse of my future, and it's not pretty. So one would think I'd put everything into living for every moment I do have, right? But I feel trapped - don't want to unnecessarily spend money I may need, want to save any paid time off I've earned at work in case things all of sudden pick up speed and I need to be off work to do more personal caregiving. And yet, time's a-wasting! But....I have to be cautious! I have to save more! I need to be able to support myself when Dave's disease beings to progress! Because that WILL happen, right? This can't go on forever, right? When we first received the diagnosis, we were told six years was the average life span after diagnosis. But it doesn't seem like Dave has progressed significantly at all. I have met and talked with others who have had diagnoses in the last year or two, and their husbands have progressed so much faster than Dave. We are stuck in this middle ground where enough has happened to change my husband permanently, and my life permanently - but nothing big has happened with his disease for awhile now. His progression is very atypical - probably started about 18 years ago - so when he was 49 - and while yes, things have progressed, the speed has not been near the norm in any way. So maybe he'll be 90 when he dies! Which means I have 20 plus more years of this! I've tried to look at this all from a number of angles to see how I can plan, what I can plan. I end up more confused. So I'm just going to keep mulling it over and see what comes my way.
We have seen the new neurologist, Dr. Scharre, who is an expert in his field. He has experience with FTD. He is doing his own new assessment of Dave, and after our first visit with him for about an hour and a half, he's not convinced yet that it is FTD. He hadn't seen the MRI films yet, so when we see him again in two weeks for some more testing and evaluation, he may have changed his mind. He did state if it is FTD, that Dave's is very atypical - yup - I knew that! He had some cognitive testing done with Dave in another office while he asked me some questions and took some history. He is doing a number of blood tests to rule out some things. I still feel once he sees the MRI where there is significant atrophy, that he'll confirm the diagnosis. Or - maybe he'll have other ideas. Maybe it's some other form of dementia. This feels like the right thing to do - have this second evaluation - and a confirmation is expected. But who knows?
There are times when I wonder what if my husband was always like this? Maybe he was always not so smart, and often not appropriate. It has been so long, I'm not sure any more. I contacted the county agency he worked at for 18 years before being fired in 2002 to see if I could find out exactly why he was fired, and if performance had been declining for awhile before then. They were very helpful, and since it's a county agency, personnel records are a matter of public record. So I recently received copies of his performance evaluations and disciplinary actions. Glowing reviews the first fifteen years of his job, promotion to a lead position. Then a lapse in judgement; some notations of not following directions; a year or so later, a two week suspension for a BIG lapse in judgement; talking in Spanish to people when he knew they didn't speak Spanish; inability to read cues from others' comments or behavior. Yup - that sounds like the beginning of it all. What was great and hard at the same time was to read his responses to his early evaluations. They were so well written; so well thought out; so obvious that he cared about his work with kids and knew what he was doing. That's the man I married! That's the man I knew for the first twenty years of our marriage! Reading his writings made me miss what might have been for the last fifteen to seventeen years if this disease hadn't paid us a visit. I was reminded of how much we had - how much fun, how much love. It was good. But it was sad.
So I'm in a good place for now. Making efforts to go somewhere - to the river for a walk - on a drive to southern Ohio to see the fall leaves changing color - me getting on the road, Dave getting out of the house. My first effort was a success - a win-win - I got to go some place I wanted to go - Dave went along. His enthusiasm was short lived, but that's ok. We just headed home before I would have wanted to, but we can't always get what we want now, can we? I can hang in there, keep trying something new to see what works for now - as things WILL change. I can have some control over today and tomorrow for now - but not much past that. Still working on finding that balance of living for now and planning for the future, without stressing out over life as it is and life as it may be. That's my challenge for now.
In the mean time, happy fall! My favorite time of year. The holidays will be upon us - I plan to be realistic about expectations, thankful for what I have, and hopeful for the future!
Thursday, August 24, 2017
Chapter 44 Dave's World
If you're looking for something uplifting in reading this post, stop now! Don't continue! Close out now! I'm in a mood this week. Just warning you!
So, I'm feeling very much like I'm stuck in the movie Ground Hog Day, except it's called Dave's World! I'm stuck in Dave's world. I was reading through some posts on the Facebook page FTD Spouse when I saw in black and white the analogy for how I've been feeling. The sameness of every day is chipping away at my soul. I know many people are dealing with much more difficult situations with their spouses and families than I am. Most days that keeps me going, knowing that I am blessed. But there are days where I'm stuck in my reality it's been difficult to talk myself into recognizing all the blessings. It's part of the cycle, and I know it will pass. For now, I'm grieving the loss of what should be, of what I thought life would be right now in my life. I'm grieving the loss of some one to share my life with, to dream with, to work together with. The other day Dave mentioned he doesn't remember our wedding day. Not such a big deal, but a little sting, a little chipping away at my soul. Absolutely hate this disease.
I feel guilt at the lack of quality I see in Dave's daily life and feel I should be working to improve it. He lives the same life every day with very little variation. He's alone from about 7 in the morning until about 3 in the afternoon. I've asked him about finding maybe a friendly visitor, or someone to take him to lunch a couple times a week. His response: why? I've invited him to go for a walk along the river on these beautiful evenings we've been having - why? He is very content with his daily routine that I judge to be so boring, so lifeless. But I guess I'm beginning to ask myself, who am I to judge? If he's happy - well, not necessarily happy, but content - with the way his life is, why do I keep trying to change it? I've realized it's because I can't stand it. Selfishly, I CAN'T STAND IT! I can't stand the sameness of every day. The same conversations each day about the dog doing her business, what came in the mail, and what he needs from the grocery store. The only conversations he initiates are about things he is ruminating about, like did I lock my car? Did I lock the doors? Am I going to the grocery store? He did ask me the other day what a catheter is ...? Turns out there was a commercial for them on the game show network, and he wasn't sure what they were for.
I find myself tearing up any time I have a few moments alone, whether it's in the car, or at work, or on the back porch. I don't think I can do this for another 15 years. This has been going on so long that the good things about our marriage seem to be fading into the background. A friend asked me if the Dave of fifteen years ago would want me to be trying to figure this all out, trying to make it all work, being tied to what seems like a shrinking narrow existence. Honestly? I can't say. He was a person who demonstrated his love for those around him through acts of service. He studied for the priesthood. He was a social worker, working with the severely mentally ill, then with children's services for 18 years. So his life was one of service, in his work and in his family life. I can't help but think if the situation was reversed that he would be content to be taking care of me til death do us part. That's the kind of person he was. He would never complain. He doesn't complain now. The closest he gets to complaining is when he asks someone in Spanish how they are doing and they respond "muy bien". He responds that he's never muy bien - just bien or asi asi (so so). But he laughs about it.
So it's time for me to snap out of it - it is what it is. And if fifteen more years is what I have left with him, I need to remember all the blessings in my life. I need to stop feeling guilty if I meet friends for a happy hour. I need to be ok with doing my own thing. I need to suck it up and keep going. And I'm probably going to need some help - it's time to check in with my doctor and make sure I'm taking the best care of myself that I can. And I need to find ways to feed my soul. But this all is too much some days. Too much to see my way around it and through it. I wish I had a better heart, a lot more patience and willingness to throw myself into the role of caregiver, and accept the challenge to be the best caregiver ever! I'll get there.
But not today.
So, I'm feeling very much like I'm stuck in the movie Ground Hog Day, except it's called Dave's World! I'm stuck in Dave's world. I was reading through some posts on the Facebook page FTD Spouse when I saw in black and white the analogy for how I've been feeling. The sameness of every day is chipping away at my soul. I know many people are dealing with much more difficult situations with their spouses and families than I am. Most days that keeps me going, knowing that I am blessed. But there are days where I'm stuck in my reality it's been difficult to talk myself into recognizing all the blessings. It's part of the cycle, and I know it will pass. For now, I'm grieving the loss of what should be, of what I thought life would be right now in my life. I'm grieving the loss of some one to share my life with, to dream with, to work together with. The other day Dave mentioned he doesn't remember our wedding day. Not such a big deal, but a little sting, a little chipping away at my soul. Absolutely hate this disease.
I feel guilt at the lack of quality I see in Dave's daily life and feel I should be working to improve it. He lives the same life every day with very little variation. He's alone from about 7 in the morning until about 3 in the afternoon. I've asked him about finding maybe a friendly visitor, or someone to take him to lunch a couple times a week. His response: why? I've invited him to go for a walk along the river on these beautiful evenings we've been having - why? He is very content with his daily routine that I judge to be so boring, so lifeless. But I guess I'm beginning to ask myself, who am I to judge? If he's happy - well, not necessarily happy, but content - with the way his life is, why do I keep trying to change it? I've realized it's because I can't stand it. Selfishly, I CAN'T STAND IT! I can't stand the sameness of every day. The same conversations each day about the dog doing her business, what came in the mail, and what he needs from the grocery store. The only conversations he initiates are about things he is ruminating about, like did I lock my car? Did I lock the doors? Am I going to the grocery store? He did ask me the other day what a catheter is ...? Turns out there was a commercial for them on the game show network, and he wasn't sure what they were for.
I find myself tearing up any time I have a few moments alone, whether it's in the car, or at work, or on the back porch. I don't think I can do this for another 15 years. This has been going on so long that the good things about our marriage seem to be fading into the background. A friend asked me if the Dave of fifteen years ago would want me to be trying to figure this all out, trying to make it all work, being tied to what seems like a shrinking narrow existence. Honestly? I can't say. He was a person who demonstrated his love for those around him through acts of service. He studied for the priesthood. He was a social worker, working with the severely mentally ill, then with children's services for 18 years. So his life was one of service, in his work and in his family life. I can't help but think if the situation was reversed that he would be content to be taking care of me til death do us part. That's the kind of person he was. He would never complain. He doesn't complain now. The closest he gets to complaining is when he asks someone in Spanish how they are doing and they respond "muy bien". He responds that he's never muy bien - just bien or asi asi (so so). But he laughs about it.
So it's time for me to snap out of it - it is what it is. And if fifteen more years is what I have left with him, I need to remember all the blessings in my life. I need to stop feeling guilty if I meet friends for a happy hour. I need to be ok with doing my own thing. I need to suck it up and keep going. And I'm probably going to need some help - it's time to check in with my doctor and make sure I'm taking the best care of myself that I can. And I need to find ways to feed my soul. But this all is too much some days. Too much to see my way around it and through it. I wish I had a better heart, a lot more patience and willingness to throw myself into the role of caregiver, and accept the challenge to be the best caregiver ever! I'll get there.
But not today.
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