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!
Sunday, December 31, 2017
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.
Saturday, August 5, 2017
Chapter 43 "You're entirely bonkers. But I'll tell you a secret. All the best people are."
So.....a new development. Or maybe not so new. My son told me a similar thing a couple of months ago, but when I talked to Dave, he seemed to understand that shows on TV are not real life. But yesterday, in the afternoon, my husband was watching the SyFy channel - some crazy movie with a giant crocodile or alligator attacking people. He said something about all the people getting eaten. I said, you know that's fake, right? He said, no, it's real - I saw that thing bite two people's heads off. So many people have been killed........
I was a little taken aback! So I explained it was just a story - made up - and that the people were just actors, that it was special effects. He asked how did they make it look so real? Again, I said special effects, and I explained that no actor would ever take a job if they were going to get killed in the part they were playing. I didn't feel like he really believed me! So I was trying to wrap my brain around all this. A little while later, I asked him about Star Wars - it was one of the first movies we saw years ago - I asked him if he thought that was real. He said, that's not real either? Then I said - what about the Harry Potter movies? Hogwarts? Wizardry? Battles with wands! He again said, that's not real either? My response was - it would be really cool if it was real! But no, it's not. He just kept wondering how they make it look so real!
So, my head was spinning. But you know what? For the first time, I was seeing a concrete symptom of his FTD. Everything else - the OCD, the lack of interest in others, the cognitive problems - they have been happening for so long, so gradually, that in the back of my mind, I've wondered if these were just who he was once our kids were grown and gone. I've known there was something wrong, but it was all elusive. And annoying. I admit, it sounds cold and unfeeling, but there are days I'm so tired of making decisions on my own, of having to do everything, give him rides every where, explain so many things to him, fix things he's messed up, get things out of the garbage he's thrown away that shouldn't have been thrown away, worried about all he eats, and on and on. All the things that sometimes people have said "My husband does that, too. Maybe you're making too much of it." But this - there's no denying it - this is new, definitely not normal, and if someone tells me their husband does that also? I'd be giving them some phone numbers and telling them their husband needs help! This is something I know is not subjective - this is "bonkers" - no matter how you look at it. But because I know it's a definitive symptom - and indicates a problem with figuring out what's real or not real - it actually helps me be more compassionate. I know now that things are progressing - it may be small - but it's the first thing that's scary. I start thinking about anyone who might knock on our door when I'm at work; anyone who might call. It brings a new perspective to me about how he looks at the world, how he processes what he hears and sees. We talked a little more today - I was giving him some concrete suggestions on how to tell if what he's seeing on TV is "real" or a story. We talked about different shows - he asked if Wheel of Fortune is real - yes, I said. It's a game show. Most game shows are real. I asked him about Big Bang Theory - he watches a lot of reruns of that - he said, that's real, right? No, I said. Those are actors that have a scripted story they are following, kind of like when our kids did plays in community theater. I asked him about Two and a Half Men (I personally HATE that show) - he thought that might be real also - again, I said no. Tried to tell him what was "real". We watched Dances with Wolves today. I pointed out if you look at the "info" on the TV about the show you're watching, and it lists actors - it's just a story - not happening in real life - no one is dying, or getting eaten, or cursed. I asked him why it didn't worry him if he thought those SyFy movies were real - like five headed sharks, and giant snakes - he said because we don't live near those places, he wasn't worried. I asked about all the vampire movies that are on that channel - he said, well, he doesn't believe in vampires, so he knew those weren't real......go figure. I don't know if he'll retain our discussions - or remember what's real or not real. We'll see. That's an easy one to check periodically. When I asked on the FTD Spouse page on Facebook if others had experienced this, the answer was a resounding yes - some folks' spouses talk to the person in the mirror or won't get undressed with the TV on because the loved one thinks the people on the TV can see them, another thinks two characters on NCIS live down the street from them and are their friends. So Dave is in good company! It is all a wild wild trip! Only in FTD land!
For the first time on this journey, I'm a little concerned about him being home alone when my son goes back to his job in the schools in the fall. I'll just have to be more vigilant, make sure he's got my cell and work number in his wallet, review what to do if he falls or hurts himself...Crazy crazy crazy. Looking foward to our appointment in October with our new neurologist. Starting to make a list of his behaviors, and this will be the strangest and most telling of them all, I have a feeling.
More later. The story continues!
I was a little taken aback! So I explained it was just a story - made up - and that the people were just actors, that it was special effects. He asked how did they make it look so real? Again, I said special effects, and I explained that no actor would ever take a job if they were going to get killed in the part they were playing. I didn't feel like he really believed me! So I was trying to wrap my brain around all this. A little while later, I asked him about Star Wars - it was one of the first movies we saw years ago - I asked him if he thought that was real. He said, that's not real either? Then I said - what about the Harry Potter movies? Hogwarts? Wizardry? Battles with wands! He again said, that's not real either? My response was - it would be really cool if it was real! But no, it's not. He just kept wondering how they make it look so real!
So, my head was spinning. But you know what? For the first time, I was seeing a concrete symptom of his FTD. Everything else - the OCD, the lack of interest in others, the cognitive problems - they have been happening for so long, so gradually, that in the back of my mind, I've wondered if these were just who he was once our kids were grown and gone. I've known there was something wrong, but it was all elusive. And annoying. I admit, it sounds cold and unfeeling, but there are days I'm so tired of making decisions on my own, of having to do everything, give him rides every where, explain so many things to him, fix things he's messed up, get things out of the garbage he's thrown away that shouldn't have been thrown away, worried about all he eats, and on and on. All the things that sometimes people have said "My husband does that, too. Maybe you're making too much of it." But this - there's no denying it - this is new, definitely not normal, and if someone tells me their husband does that also? I'd be giving them some phone numbers and telling them their husband needs help! This is something I know is not subjective - this is "bonkers" - no matter how you look at it. But because I know it's a definitive symptom - and indicates a problem with figuring out what's real or not real - it actually helps me be more compassionate. I know now that things are progressing - it may be small - but it's the first thing that's scary. I start thinking about anyone who might knock on our door when I'm at work; anyone who might call. It brings a new perspective to me about how he looks at the world, how he processes what he hears and sees. We talked a little more today - I was giving him some concrete suggestions on how to tell if what he's seeing on TV is "real" or a story. We talked about different shows - he asked if Wheel of Fortune is real - yes, I said. It's a game show. Most game shows are real. I asked him about Big Bang Theory - he watches a lot of reruns of that - he said, that's real, right? No, I said. Those are actors that have a scripted story they are following, kind of like when our kids did plays in community theater. I asked him about Two and a Half Men (I personally HATE that show) - he thought that might be real also - again, I said no. Tried to tell him what was "real". We watched Dances with Wolves today. I pointed out if you look at the "info" on the TV about the show you're watching, and it lists actors - it's just a story - not happening in real life - no one is dying, or getting eaten, or cursed. I asked him why it didn't worry him if he thought those SyFy movies were real - like five headed sharks, and giant snakes - he said because we don't live near those places, he wasn't worried. I asked about all the vampire movies that are on that channel - he said, well, he doesn't believe in vampires, so he knew those weren't real......go figure. I don't know if he'll retain our discussions - or remember what's real or not real. We'll see. That's an easy one to check periodically. When I asked on the FTD Spouse page on Facebook if others had experienced this, the answer was a resounding yes - some folks' spouses talk to the person in the mirror or won't get undressed with the TV on because the loved one thinks the people on the TV can see them, another thinks two characters on NCIS live down the street from them and are their friends. So Dave is in good company! It is all a wild wild trip! Only in FTD land!
For the first time on this journey, I'm a little concerned about him being home alone when my son goes back to his job in the schools in the fall. I'll just have to be more vigilant, make sure he's got my cell and work number in his wallet, review what to do if he falls or hurts himself...Crazy crazy crazy. Looking foward to our appointment in October with our new neurologist. Starting to make a list of his behaviors, and this will be the strangest and most telling of them all, I have a feeling.
More later. The story continues!
Sunday, July 23, 2017
Chapter 42 "Sentence first - verdict afterwards."
We celebrated a WONDERFUL wedding last weekend. Dave was able to walk his daughter down the aisle, and dance the father-daughter dance - he was in rare form! He did a little solo breakout that was fun to see! There was a glimpse of the man I fell in love with - we went dancing often when we were dating, and danced alot at our wedding! Late 70's and early 80's - disco!
Dave came back to see Kristin briefly before she was ready to walk down the aisle - I haven't been able to find out if it was his idea to see her, or if someone suggested it to him - but it was very sweet when he stepped through the door and saw her. He was quite overcome with emotion, and told her how beautiful she looked. I don't think he's said anything like that to her for years and years. He appropriately walked her down the aisle - I was holding my breath a little - and he stayed at the reception til the end - it was after midnight when we got home. I had a friend on standby to pick him up if he wanted to leave, but I didn't need to call her. He didn't talk very much to anyone, but he seemed fine throughout the evening! It was a good good weekend.
His 90 year old mother, his brother and two other family members came to the wedding. While he stated he was excited they were coming, he didn't show it. It was gone out of his mind unless I brought it up. I was glad they came. His brother hadn't seen him in about ten years, and it was obvious to him that Dave has troubles. His behavior was ok, considering what it could have been. He still went back to the bedroom rather than sit with them while they were over at the house in the evening, which was a little awkward, but it is what it is. He indicated his brother's grandson who was also visiting "is not family." I explained it to the young man, 14 years old, and I think he "got" it. It can be embarrassing...but that's life right now.
A wedding makes me think all over again about the wedding vows my husband and I spoke 37 years ago. While we didn't exactly say "for better or worse, in sickness and in health", that is what we meant. And when we said that, promised that, pledged that with all our hearts, unless or until it happens, we can't know if we'll be able to do it. I am trying. It's been fifteen years now, even though I didn't know until three years ago what was actually going on. It is so so difficult, and so lonely with this disease. I've lost my best friend, the witness to my life who is the only one who shared so many memories with me. He's still here, but he's empty. Most days I feel like superwoman, and I can do anything. But many days I don't want to do it any more. While the annoyances are pretty minor at this point, some days it drives me mad. I went to a movie last night with my niece - I don't know when I last went to a movie! Dave knew we were going, but my phone vibrated with an incoming call three times in twenty minutes starting at 9:30 pm, and each time he left a message. While a part of me was worried about it being an emergency, most of me figured it was about locking the front door, or my car, or something like that. I didn't answer it. He called a fourth time as we were leaving the movie. I answered. He wondered where I was, and would I be home soon, as he wanted to go to bed but felt he couldn't because of the dog....??? I assured him he could go to bed and the dog would be fine, that I was on my way home. Minor thing, right? It's definitely a new thing - the fact that he didn't realize the dog was fine, that there are times I'm out past nine when he's usually asleep, and everything is fine. But minor. Just breathe.
I was able to get us in with Dr. Scharre, a well regarded neurologist at Ohio Statue University. He's considered the "expert" in central Ohio with FTD, and I've heard him speak a couple of times at different events. We only have to wait until October. I'm hoping we'll get another MRI to see if anything looks different. If everything is the same, I'll know I'm in for a really long slow ride, for who knows how long. Do I want to know that? What can I do with that information? Not a lot. I wish I knew someone who has this similar experience. I feel guilt about wishing things would move along, and guilt that we seem to have it so easy compared to so many. Two people I've spoken with recently are experiencing a much fast progression. I frankly don't know if I can do this for fifteen more years. That is depressing! I should be so happy that things are going slow, but it is seriously sad to live with someone who doesn't really talk to you - doesn't wonder how your day was or how you're feeling. UGH! See? Complain, complain, complain! I need to be positive! Life is good! Tomorrow will be better! At least I'm not dealing with incontinence! Yay!
I feel like FTD is a sentence - doesn't matter how you've lived your life, if you're a saint or a terrible person, if you have friends and family - you just get a life sentence - Dave still thinks nothing is wrong with him, so he is really unaffected by this life sentence. Me, on the other hand? I think about it every single day - and the verdict? That will come afterwards? That's a verdict on me - on how I handle this journey - so I'm going to just keep hanging in there. Vent on this blog when I need to. Cry by myself when I need to. Smile on the outside when I need to. Put one foot in front of the other and continue to hope for more good days than bad. Make plans for things in the future so I have something to look forward to. Planning a little trip for me, whether it's to visit family or go see my grandson, while something to look forward to, also starts the guilt trip, the selfish feeling of doing it without Dave. Still have to figure that part out....inclusion. Working on it. Hanging in there.
Dave came back to see Kristin briefly before she was ready to walk down the aisle - I haven't been able to find out if it was his idea to see her, or if someone suggested it to him - but it was very sweet when he stepped through the door and saw her. He was quite overcome with emotion, and told her how beautiful she looked. I don't think he's said anything like that to her for years and years. He appropriately walked her down the aisle - I was holding my breath a little - and he stayed at the reception til the end - it was after midnight when we got home. I had a friend on standby to pick him up if he wanted to leave, but I didn't need to call her. He didn't talk very much to anyone, but he seemed fine throughout the evening! It was a good good weekend.
His 90 year old mother, his brother and two other family members came to the wedding. While he stated he was excited they were coming, he didn't show it. It was gone out of his mind unless I brought it up. I was glad they came. His brother hadn't seen him in about ten years, and it was obvious to him that Dave has troubles. His behavior was ok, considering what it could have been. He still went back to the bedroom rather than sit with them while they were over at the house in the evening, which was a little awkward, but it is what it is. He indicated his brother's grandson who was also visiting "is not family." I explained it to the young man, 14 years old, and I think he "got" it. It can be embarrassing...but that's life right now.
A wedding makes me think all over again about the wedding vows my husband and I spoke 37 years ago. While we didn't exactly say "for better or worse, in sickness and in health", that is what we meant. And when we said that, promised that, pledged that with all our hearts, unless or until it happens, we can't know if we'll be able to do it. I am trying. It's been fifteen years now, even though I didn't know until three years ago what was actually going on. It is so so difficult, and so lonely with this disease. I've lost my best friend, the witness to my life who is the only one who shared so many memories with me. He's still here, but he's empty. Most days I feel like superwoman, and I can do anything. But many days I don't want to do it any more. While the annoyances are pretty minor at this point, some days it drives me mad. I went to a movie last night with my niece - I don't know when I last went to a movie! Dave knew we were going, but my phone vibrated with an incoming call three times in twenty minutes starting at 9:30 pm, and each time he left a message. While a part of me was worried about it being an emergency, most of me figured it was about locking the front door, or my car, or something like that. I didn't answer it. He called a fourth time as we were leaving the movie. I answered. He wondered where I was, and would I be home soon, as he wanted to go to bed but felt he couldn't because of the dog....??? I assured him he could go to bed and the dog would be fine, that I was on my way home. Minor thing, right? It's definitely a new thing - the fact that he didn't realize the dog was fine, that there are times I'm out past nine when he's usually asleep, and everything is fine. But minor. Just breathe.
I was able to get us in with Dr. Scharre, a well regarded neurologist at Ohio Statue University. He's considered the "expert" in central Ohio with FTD, and I've heard him speak a couple of times at different events. We only have to wait until October. I'm hoping we'll get another MRI to see if anything looks different. If everything is the same, I'll know I'm in for a really long slow ride, for who knows how long. Do I want to know that? What can I do with that information? Not a lot. I wish I knew someone who has this similar experience. I feel guilt about wishing things would move along, and guilt that we seem to have it so easy compared to so many. Two people I've spoken with recently are experiencing a much fast progression. I frankly don't know if I can do this for fifteen more years. That is depressing! I should be so happy that things are going slow, but it is seriously sad to live with someone who doesn't really talk to you - doesn't wonder how your day was or how you're feeling. UGH! See? Complain, complain, complain! I need to be positive! Life is good! Tomorrow will be better! At least I'm not dealing with incontinence! Yay!
I feel like FTD is a sentence - doesn't matter how you've lived your life, if you're a saint or a terrible person, if you have friends and family - you just get a life sentence - Dave still thinks nothing is wrong with him, so he is really unaffected by this life sentence. Me, on the other hand? I think about it every single day - and the verdict? That will come afterwards? That's a verdict on me - on how I handle this journey - so I'm going to just keep hanging in there. Vent on this blog when I need to. Cry by myself when I need to. Smile on the outside when I need to. Put one foot in front of the other and continue to hope for more good days than bad. Make plans for things in the future so I have something to look forward to. Planning a little trip for me, whether it's to visit family or go see my grandson, while something to look forward to, also starts the guilt trip, the selfish feeling of doing it without Dave. Still have to figure that part out....inclusion. Working on it. Hanging in there.
Saturday, June 3, 2017
Chapter 41 "If you don't know where you are going, any road can take you there."
It's been a long time, but a busy last five months. We sold our house we'd lived in for 26 years, and purchased a one floor ranch about four miles from our old house. Not sure why I'm saying "we", because it felt very much like a one woman effort! Dave did his best to help, but just doesn't have it in him to participate in packing and unpacking. We moved in the end of March - still have boxes to go through, but we're getting there. It's been nice to have the projects, like painting the kitchen cabinets, figuring out where to hang pictures, best place for furniture. Fun!
I was very concerned with some behaviors I observed during the whole process of moving and settling in since I was spending quite a bit of time with Dave - more than usual on a daily basis. He didn't seem to get that we had to take everything out of the house - we couldn't leave stuff we didn't want to use anymore! He had quite a bit of problem finding words for a couple of days - that was scary. He had a tough time having patience with "finding" things - I couldn't get it all unpacked as quickly as he would have liked, but it is what it is. The word finding has improved, and he has settled back into a routine - things he uses regularly now have a place where he knows where to find them, but there are still things I haven't come across yet - things he NEVER uses - but he doesn't know where they are. We'll get there. I have to say I was pretty anxious for a couple of weeks watching this happen, and wondering if I'd made a terrible decision to move. But one floor has been great. I'm getting quotes now to move the washer and dryer up to the main floor. I hadn't realized how much strength he's lost in his legs until we were carrying things to the car to take things back and forth. He couldn't take a step up or down if he had anything in his hands. He needed to be able to hang on to something. Our first couple of days in the house, he went to grab the towel bar in the bathroom to help pull himself up off the commode and tore it right out the wall. He quickly figured out that was not a good idea! Top on my list when we see our family physician is to ask if there's a way to tell if this is from the disease, or is this something that physical therapy might help? He shuffles, barely picking his feet up off the ground.
No neurologist yet, but not sure we need one until I notice BIG changes. I notice little ones, at least I think I do. I think that is why I haven't written for awhile - not a lot of change. Not that I want things to get worse for him - he is perfectly content and mostly compliant - but it is so so difficult to maintain my focus on learning everything I can and watching for changes when any decline he may have had over the last couple of years has been so slight. I don't know any more what I'm looking for! Part of the reason for this particular quote in the title is that none of us in the elite FTD club know exactly where we are going, and the roads and journeys we all take have similarities, but are so different. It's a little strange to write this, but sometimes I feel guilty that my husband is doing so much better than so many other folks with this disease - I feel I haven't paid my dues! Even though this has been going on now for at least fifteen years - people I've met with diagnoses in the last year have progressed SO fast and surpassed any problems my husband has. It is weird.
Anyway, I think I'm back to feeling like I want to write more regularly - even if it's just to note that things are pretty much the same. I did do a webinar with AFTD regarding four pretty distinct patterns of atrophy in the behavior variant FTD, and the groupings of symptoms with those patterns. I'll post the link next time.
It's already June. CRAZY! Wedding is only about six weeks away. FUN!
I was very concerned with some behaviors I observed during the whole process of moving and settling in since I was spending quite a bit of time with Dave - more than usual on a daily basis. He didn't seem to get that we had to take everything out of the house - we couldn't leave stuff we didn't want to use anymore! He had quite a bit of problem finding words for a couple of days - that was scary. He had a tough time having patience with "finding" things - I couldn't get it all unpacked as quickly as he would have liked, but it is what it is. The word finding has improved, and he has settled back into a routine - things he uses regularly now have a place where he knows where to find them, but there are still things I haven't come across yet - things he NEVER uses - but he doesn't know where they are. We'll get there. I have to say I was pretty anxious for a couple of weeks watching this happen, and wondering if I'd made a terrible decision to move. But one floor has been great. I'm getting quotes now to move the washer and dryer up to the main floor. I hadn't realized how much strength he's lost in his legs until we were carrying things to the car to take things back and forth. He couldn't take a step up or down if he had anything in his hands. He needed to be able to hang on to something. Our first couple of days in the house, he went to grab the towel bar in the bathroom to help pull himself up off the commode and tore it right out the wall. He quickly figured out that was not a good idea! Top on my list when we see our family physician is to ask if there's a way to tell if this is from the disease, or is this something that physical therapy might help? He shuffles, barely picking his feet up off the ground.
No neurologist yet, but not sure we need one until I notice BIG changes. I notice little ones, at least I think I do. I think that is why I haven't written for awhile - not a lot of change. Not that I want things to get worse for him - he is perfectly content and mostly compliant - but it is so so difficult to maintain my focus on learning everything I can and watching for changes when any decline he may have had over the last couple of years has been so slight. I don't know any more what I'm looking for! Part of the reason for this particular quote in the title is that none of us in the elite FTD club know exactly where we are going, and the roads and journeys we all take have similarities, but are so different. It's a little strange to write this, but sometimes I feel guilty that my husband is doing so much better than so many other folks with this disease - I feel I haven't paid my dues! Even though this has been going on now for at least fifteen years - people I've met with diagnoses in the last year have progressed SO fast and surpassed any problems my husband has. It is weird.
Anyway, I think I'm back to feeling like I want to write more regularly - even if it's just to note that things are pretty much the same. I did do a webinar with AFTD regarding four pretty distinct patterns of atrophy in the behavior variant FTD, and the groupings of symptoms with those patterns. I'll post the link next time.
It's already June. CRAZY! Wedding is only about six weeks away. FUN!
Sunday, January 1, 2017
Chapter 40 "We're all mad here."
HaPpY nEw YeAr!!!
Can't believe it's 2017. It's been awhile since I've written. I've struggled with a few things. After gathering all the medical records and having them sent to the Penn FTD Center so he could be part of a research study there and have a full assessment and research MRI, it turns out the fact that he fell and developed a subdural hematoma, he doesn't qualify. Even though he had the diagnosis before! I don't get it. His fall and surgeries certainly didn't move anything along. He continues to be on a bit of a plateau and is atypical. I'm quite disappointed - I was really excited about having a full assessment done by someone who only deals with FTD, which meant I might get some confirmation or explanation about all Dave's weird symptoms and whether they are related. No help there. I haven't been able to find a new neurologist with any expertise in dementia around here, at least that I can get into in the next six months to a year! Frustrating. I'm thinking that maybe some medication would help with some of Dave's OCD behaviors. They are beginning to make me a little crazy - driving me a little mad! (Not angry - you know what I mean!)
Also, internet robots have found my blog and are racking up fake page views. I don't know why that bothers me. I guess before that, I felt good that some folks were actually reading my blog and finding it helpful, or making them feel less alone. I would get 10 or 12 page views a day. Now it's hundreds - most of them fake - from weird web sites. But it really doesn't matter. I'm writing this for me to be able to put it all out there and have a record of this journey.
I discovered a facebook page called FTD Spouses. It has been a nice support system. It's a closed group, and everyone has a spouse with FTD. I can throw a question out there and find out if others are seeing the same thing in their spouses. It has also confirmed this is a disease that varies from person to person - such vast difference, but a lot of similarities also. And it's a place to feel some fellowship, especially during the holidays.
Dave is pretty much the same, at least from my perspective. He's had a few weird episodes - about a week ago, it was 11:30 at night and he got up to use the restroom. I made sure he knew it was the middle of the night and he should come back to bed. I fell asleep, and about 20 minutes later realized he hadn't come back to bed. I went downstairs and asked him if he realized how late it was - almost midnight - he said he knew what time it was, but since he was up, he was fixing himself a boiled egg - because that's what he does on Wednesday mornings, and it was almost Wednesday morning, of course! He'd let the dog out and fed her, like he usually does at 6 in the morning! I suggested he turn off the boiling water and come back to bed, but he said he was fine and he'd just stay up - !!! At about 3:30 in the morning, he came back to bed - said he'd gotten bored - nothing was really on TV - which means Family Feud or the game show network! He'd played his computer game for an hour or so, his handheld game for another hour, and had the TV on. I don't get it. He still got up at 6 in the morning, let the dog out and fed her, and had cereal since he'd already had his boiled egg. :)
He had a weird day where he was sure he didn't put his belt on right - I checked it for him - he took it off, put it back on - it was on just how it should be - but he said it wasn't - he couldn't "feel" it on the one side. He went up and looked in the mirror - couldn't figure it out. Then realized he didn't have stuff in his pocket that he normally does - once he put things in his pocket, the world was well. A good example of how people with this disease can't quite connect the dots on things - kind of like swiss cheese - some holes in there that make it hard to figure things out.
He has some awful behaviors where he'll take a napkin or Kleenex out of the garbage to blow his nose - he doesn't want to use a new one. He doesn't wash his hands after doing this, or after pushing down the garbage. He takes things out of the wastebasket in our bathroom each day and puts them on our bed while he makes our bed. GROSS! But no matter how much of a fuss I make when I see it - which I've seen more since I've taken a couple days off with the holidays - he just can't change what he's doing. Goes to the bathroom at the same time each day whether he needs to or not, eats his snacks of crackers with peanut butter and jelly at the same time every day, greets me with a grocery list each day when I get home from work that usually has cookies and black licorice on it. And apparently as soon as I leave the house during the day to run an errand, Dave fixes himself another snack! This has been reported by my son! It is what it is.
We have everything set up with an attorney now, and have put the house in just my name, changed beneficiaries to "my probate estate" - this is in case I die before Dave - everything will be able to bypass him and go to my kids, and they'll take care of him. I have power of attorney, healthcare power of attorney, and a few other things. We got a will set up. I feel better. We are also looking at selling our house we've lived in for 24 years and moving to a small ranch with a very small mortgage. I realized that if we stay here, I won't be able to afford the mortgage payment if Dave does need to go into a nursing home because his retirement and social security would go straight to the nursing home. So this will give me some financial relief for now, as we seem to be living paycheck to paycheck no matter how much I cut out of our budget. I also will feel more comfortable about a one level house - we live in a split with four levels, and I worry about his falling. He moves slower and slower every day. Walks with a shuffle. We went to look at a house that came on the market and is close to our neighborhood, but in an area with far lower taxes - my best friend met me there - she hadn't seen Dave in awhile, and really felt there was a big change. Maybe because I see it every day, I can't gauge the changes. But he is still a very quiet guy - doesn't raise a fuss about anything - just goes along. Some folks with FTD can get quite nasty and defiant. Dave pretty much is compliant and quiet, not engaged much in the world. People still tell me "he's doing great!!!" when they see him because he talks loudly in Spanish to them, says the same thing he always does, laughs - but after that, the lights go out in his eyes - they don't seem to notice that. It's very hard for him to stay engaged or have interest in much. But we are making it work.
So, busy, busy, busy! But I've found I do better when there's a lot to do - I don't dwell on our situation living with FTD. There's too much else to think about! I'm looking forward to sort of having a fresh start in a smaller more manageable place, since I kind of have to do it all, or pay someone to do it. Plus, my daughter got engaged over the holidays! So I'll be busy helping plan a wedding for July. Haven't quite figured out how I'll pay for it! So the timing of selling the house is probably good!
I can only hope that 2017 brings us blessings of peace and contentment with our lives as they are, one day at a time.
Can't believe it's 2017. It's been awhile since I've written. I've struggled with a few things. After gathering all the medical records and having them sent to the Penn FTD Center so he could be part of a research study there and have a full assessment and research MRI, it turns out the fact that he fell and developed a subdural hematoma, he doesn't qualify. Even though he had the diagnosis before! I don't get it. His fall and surgeries certainly didn't move anything along. He continues to be on a bit of a plateau and is atypical. I'm quite disappointed - I was really excited about having a full assessment done by someone who only deals with FTD, which meant I might get some confirmation or explanation about all Dave's weird symptoms and whether they are related. No help there. I haven't been able to find a new neurologist with any expertise in dementia around here, at least that I can get into in the next six months to a year! Frustrating. I'm thinking that maybe some medication would help with some of Dave's OCD behaviors. They are beginning to make me a little crazy - driving me a little mad! (Not angry - you know what I mean!)
Also, internet robots have found my blog and are racking up fake page views. I don't know why that bothers me. I guess before that, I felt good that some folks were actually reading my blog and finding it helpful, or making them feel less alone. I would get 10 or 12 page views a day. Now it's hundreds - most of them fake - from weird web sites. But it really doesn't matter. I'm writing this for me to be able to put it all out there and have a record of this journey.
I discovered a facebook page called FTD Spouses. It has been a nice support system. It's a closed group, and everyone has a spouse with FTD. I can throw a question out there and find out if others are seeing the same thing in their spouses. It has also confirmed this is a disease that varies from person to person - such vast difference, but a lot of similarities also. And it's a place to feel some fellowship, especially during the holidays.
Dave is pretty much the same, at least from my perspective. He's had a few weird episodes - about a week ago, it was 11:30 at night and he got up to use the restroom. I made sure he knew it was the middle of the night and he should come back to bed. I fell asleep, and about 20 minutes later realized he hadn't come back to bed. I went downstairs and asked him if he realized how late it was - almost midnight - he said he knew what time it was, but since he was up, he was fixing himself a boiled egg - because that's what he does on Wednesday mornings, and it was almost Wednesday morning, of course! He'd let the dog out and fed her, like he usually does at 6 in the morning! I suggested he turn off the boiling water and come back to bed, but he said he was fine and he'd just stay up - !!! At about 3:30 in the morning, he came back to bed - said he'd gotten bored - nothing was really on TV - which means Family Feud or the game show network! He'd played his computer game for an hour or so, his handheld game for another hour, and had the TV on. I don't get it. He still got up at 6 in the morning, let the dog out and fed her, and had cereal since he'd already had his boiled egg. :)
He had a weird day where he was sure he didn't put his belt on right - I checked it for him - he took it off, put it back on - it was on just how it should be - but he said it wasn't - he couldn't "feel" it on the one side. He went up and looked in the mirror - couldn't figure it out. Then realized he didn't have stuff in his pocket that he normally does - once he put things in his pocket, the world was well. A good example of how people with this disease can't quite connect the dots on things - kind of like swiss cheese - some holes in there that make it hard to figure things out.
He has some awful behaviors where he'll take a napkin or Kleenex out of the garbage to blow his nose - he doesn't want to use a new one. He doesn't wash his hands after doing this, or after pushing down the garbage. He takes things out of the wastebasket in our bathroom each day and puts them on our bed while he makes our bed. GROSS! But no matter how much of a fuss I make when I see it - which I've seen more since I've taken a couple days off with the holidays - he just can't change what he's doing. Goes to the bathroom at the same time each day whether he needs to or not, eats his snacks of crackers with peanut butter and jelly at the same time every day, greets me with a grocery list each day when I get home from work that usually has cookies and black licorice on it. And apparently as soon as I leave the house during the day to run an errand, Dave fixes himself another snack! This has been reported by my son! It is what it is.
We have everything set up with an attorney now, and have put the house in just my name, changed beneficiaries to "my probate estate" - this is in case I die before Dave - everything will be able to bypass him and go to my kids, and they'll take care of him. I have power of attorney, healthcare power of attorney, and a few other things. We got a will set up. I feel better. We are also looking at selling our house we've lived in for 24 years and moving to a small ranch with a very small mortgage. I realized that if we stay here, I won't be able to afford the mortgage payment if Dave does need to go into a nursing home because his retirement and social security would go straight to the nursing home. So this will give me some financial relief for now, as we seem to be living paycheck to paycheck no matter how much I cut out of our budget. I also will feel more comfortable about a one level house - we live in a split with four levels, and I worry about his falling. He moves slower and slower every day. Walks with a shuffle. We went to look at a house that came on the market and is close to our neighborhood, but in an area with far lower taxes - my best friend met me there - she hadn't seen Dave in awhile, and really felt there was a big change. Maybe because I see it every day, I can't gauge the changes. But he is still a very quiet guy - doesn't raise a fuss about anything - just goes along. Some folks with FTD can get quite nasty and defiant. Dave pretty much is compliant and quiet, not engaged much in the world. People still tell me "he's doing great!!!" when they see him because he talks loudly in Spanish to them, says the same thing he always does, laughs - but after that, the lights go out in his eyes - they don't seem to notice that. It's very hard for him to stay engaged or have interest in much. But we are making it work.
So, busy, busy, busy! But I've found I do better when there's a lot to do - I don't dwell on our situation living with FTD. There's too much else to think about! I'm looking forward to sort of having a fresh start in a smaller more manageable place, since I kind of have to do it all, or pay someone to do it. Plus, my daughter got engaged over the holidays! So I'll be busy helping plan a wedding for July. Haven't quite figured out how I'll pay for it! So the timing of selling the house is probably good!
I can only hope that 2017 brings us blessings of peace and contentment with our lives as they are, one day at a time.
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