It's been a while. Let's see. Continuing with the 4th nerve palsy problem creating double vision. At the follow up in December with the ophthalmologist, it was noted that Dave had retinal hemorrhaging. In October he had it in his left eye; in December it was looking better, but he had new hemorrhaging in the right eye. So we set up an appointment to see a retinal specialist - I didn't know there was such a specialty. This physician noted the hemorrhaging, and set up a follow up in February to make sure there's no swelling that has developed. This is apparently usually brought on by high blood pressure or diabetes. Dave's blood pressure had been all over the place, so it was suggested we check in with our primary care physician and monitor his blood pressure more aggressively. So......we set up an appointment with Dave's regular doctor - who is a young new doctor taking the place of the doctor he'd seen for 30 some years - the doctor who has been on this ride with us since the beginning, who made the referral to a neurologist two years ago, has moved up to administration. The new very young doctor hadn't seen Dave before. His secretary is familiar with all Dave's history, and gave us a little bit longer appointment because there would be a lot to cover. To make a long story short, this new doctor had no sense of what FTD really is, told Dave he seemed just fine to him and that there didn't appear to be anything wrong with him. His blood pressure was fine. If it was a little high one day, just take a second pill that day......seriously? So what about the retinal hemorrhaging? What about the 4th nerve palsy? Shouldn't there be some concern over what is causing that if it's not high blood pressure? I keep being told by all the professionals that it has nothing to do with the FTD, so WHAT IS CAUSING IT? Is it just "old" age? Ugh. I feel I've lost anyone to be overseeing Dave's general health. I'm supposed to make an appointment for his regular checkup - a "welcome to Medicare" checkup. I'm not sure I want to do it with this young doctor unless he takes it upon himself to learn about FTD. I'm thinking I'll call his secretary and be frank with her, and see if he can switch to one of the older more experienced doctors. I want someone who knows what to be looking for - am I asking for too much?
I recently had a woman reach out to me, offering support and telling me to hang in there. Her situation sounds so much like mine - and it was amazing to know there's someone going through so much of the SAME THING I'm going through. We've emailed a couple of times, and I hope to stay in contact. I also hope to go to the AFTD conference in May. I need further education myself on all this.
We've made an appointment with the neurologist. I'm hoping she'll have some suggestions on a primary care physician who is on top of FTD and coordinate and pay attention to all the issues and pull them together. Pie in the sky, I'm afraid.
I've reached out to Penn State's FTD Center to see about including Dave in any studies they may have - maybe something with an annual evaluation. That would be a great way to feel like all this is contributing to something - statistics, progression, symptoms, whatever. So far I haven't heard back. It's hard to believe there isn't something here in the capital city of the state of Ohio, with a large university right here. But I haven't been able to find anything. Maybe our neurologist will be able to answer some of those questions and give us some direction. I'd also kind of like a little more evaluation to get done - maybe another MRI to see if it looks the same as a year ago. I don't know what that will tell me. I'm grasping at straws. I think because I'm afraid of what's to come, of when it might be coming.
I've been thinking lately about my story - our story. I sometimes wonder what my story is - but there is no "my" story - it's our story - for better or worse. Unfortunately like all fairy tales, there's a villain or evil witch - and we won't get a happy ending, no happily ever after. We did have a wonderful beginning to our story - and it's not the end. But I feel like the villain in the story sometimes. I know the only villain is the disease. But I find my patience constantly tested. I see the ugly side of myself sometimes. But each day, I get to try again. That's all I can do. I've been reading some other blogs - one a woman wrote along with her husband - he had FTD, and passed away this month. Sometimes he wrote the blog - and was so articulate about this disease! My husband wouldn't be able to do that. Another blog is a husband writing about his wife - he's been taking care of her for years - she is unable to care for herself at all. He does everything for her - and he appears to have the patience and goodness of a saint. I don't think I'll be that strong when the real test comes. At the same time, it seems physical problems may be easier - that's not quite the word I mean, but another isn't coming to me - to navigate than these everyday annoying behavioral and cognitive issues. They are not really measurable at this point - just evident.
Still no headway on starting a support group here - it is next on my list, and will part of my discussion with our neurologist. Sometimes want to be doing something just for me - but suffer the guilt of already doing too much just for me. Crazy game this is.
More to come.
Sunday, January 31, 2016
Saturday, December 26, 2015
Chapter 32 Back to my story
It's the day after Christmas and all through the house, not a creature is stirring, not even our lovely Bella!
Time to breathe! And reflect. I was fortunate to fly for a weekend to Florida to see my beautiful grandson, now five months old. I can't even put into words what that was like, to hold that little guy, talk to him, make him laugh! It was a nice treat for myself.
Then the hustle bustle of getting ready for Christmas! Got my packages out that had to be mailed, got the tree up, wrapping done, had family over the week before Christmas - the hardest part about it all is doing it alone - without a partner - Dave and I had SO MUCH FUN getting ready for Christmas. Dave used to play Santa at different area malls on the weekends - he knew sign language and Spanish, so he could surprise many children with his understanding of the language they might use. And our own children would sit on his lap and never know it was him! It was great. And the day after Thanksgiving, we would hit the stores and shop for our kids - always on a budget - but it was a shared joy. It's not like that anymore. Christmas eve we went to ten o'clock mass. I unfortunately don't go to church much anymore. It was too much for me to sit through mass next to my husband with some of his behaviors. Over the last year, I give him a ride, and pick him up after the service. So we went together - just the two of us. It was painful for me. Embarrassing? Yes. Uncomfortable? Yes. Distracting? Yes. Above all, it makes me face my inability to be patient and tolerant. Makes me feel like an awful person. I have to face the loss and feel the grief all over again, and I hate it. I know he can't help it, that it's not his fault. But as hard as I try, I can't keep the anger hidden all the time - anger at the disease and what it's taken from me. Anger at my inability to still find things about our time together to cherish. Anger at being SO inadequate at being a compassionate caretaker of my own husband! Who does that? Who doesn't have patience and tolerance with their spouse they've been married to for 36 years? If I really loved him, wouldn't this be easy? Through sickness and in health, and all that stuff? I am really really trying. But not succeeding very well. And only I know that, because only I know what is in my heart and in my head, swirling around. Some feelings and thoughts are for myself only, because sometimes I feel I'm crossing over to the dark side. When someone asks how Dave is doing, and I say fine - that he seems more grumpy and short tempered, and give a few examples, sometimes I hear in response, "oh, that sounds like my husband!", or "that's just because he's a man." Really? Come live at my house. Come live with it 24/7. You wouldn't be married to this person anymore. You wouldn't recognize them, their rudeness, their lack of filter. I can be patient and tolerant and explain why he can't do something, or shouldn't do something, or show him how to do something. But you know what? He's never going to grow or change from my patient explanation or demonstration. He can't help it. Why do I keep trying to explain things? Because I want him to stay in our house - I want to believe he can be left alone - and down deep, I know I think something might click. He'll get why it's important to make sure the water is turned off or why he can't just throw things away because he thinks it's garbage or why he shouldn't sign up for things he gets through the mail. I want him to understand his health insurance that starts in January is different than what he has now. I don't want to keep telling him over and over and over again. Because I guess I am not a tolerant person. I'm mad that the most cherished parts of the man I fell in love with and married and raised three wonderful children with have been stolen away by this disease. I'm mad that it makes me feel annoyed at him. I'm mad that I can't be the caregiver I want to be. I'm mad that there aren't any more KODAK moments - that I can't create good memories with him. At the beginning of this journey, just over a year ago, I pledged to make the most of each day - as it would most likely be his best day of the rest of his life as the disease progressed - but I haven't succeeded. I haven't been able to believe that I am fortunate that he is with us. Because he isn't.
Believe it or not, I had a nice Christmas. This is my place to vent, to get it all out, so day to day I can try again. It's a roller coaster ride - and I am still in a good place with myself, which makes it even more important to me to be honest with myself about how I'm feeling and how I'm handling it, and have a place to let it all out. I am not looking for pity. This is what it is. The blog is my place to put it all out there, raw as it may be, so I can keep going.
There's a poem I saw on Facebook in a post from the Association of FTD. I believe it was written by a woman who recently lost her husband to FTD. It very much hit home for me. I've copied it here.
Time to breathe! And reflect. I was fortunate to fly for a weekend to Florida to see my beautiful grandson, now five months old. I can't even put into words what that was like, to hold that little guy, talk to him, make him laugh! It was a nice treat for myself.
Then the hustle bustle of getting ready for Christmas! Got my packages out that had to be mailed, got the tree up, wrapping done, had family over the week before Christmas - the hardest part about it all is doing it alone - without a partner - Dave and I had SO MUCH FUN getting ready for Christmas. Dave used to play Santa at different area malls on the weekends - he knew sign language and Spanish, so he could surprise many children with his understanding of the language they might use. And our own children would sit on his lap and never know it was him! It was great. And the day after Thanksgiving, we would hit the stores and shop for our kids - always on a budget - but it was a shared joy. It's not like that anymore. Christmas eve we went to ten o'clock mass. I unfortunately don't go to church much anymore. It was too much for me to sit through mass next to my husband with some of his behaviors. Over the last year, I give him a ride, and pick him up after the service. So we went together - just the two of us. It was painful for me. Embarrassing? Yes. Uncomfortable? Yes. Distracting? Yes. Above all, it makes me face my inability to be patient and tolerant. Makes me feel like an awful person. I have to face the loss and feel the grief all over again, and I hate it. I know he can't help it, that it's not his fault. But as hard as I try, I can't keep the anger hidden all the time - anger at the disease and what it's taken from me. Anger at my inability to still find things about our time together to cherish. Anger at being SO inadequate at being a compassionate caretaker of my own husband! Who does that? Who doesn't have patience and tolerance with their spouse they've been married to for 36 years? If I really loved him, wouldn't this be easy? Through sickness and in health, and all that stuff? I am really really trying. But not succeeding very well. And only I know that, because only I know what is in my heart and in my head, swirling around. Some feelings and thoughts are for myself only, because sometimes I feel I'm crossing over to the dark side. When someone asks how Dave is doing, and I say fine - that he seems more grumpy and short tempered, and give a few examples, sometimes I hear in response, "oh, that sounds like my husband!", or "that's just because he's a man." Really? Come live at my house. Come live with it 24/7. You wouldn't be married to this person anymore. You wouldn't recognize them, their rudeness, their lack of filter. I can be patient and tolerant and explain why he can't do something, or shouldn't do something, or show him how to do something. But you know what? He's never going to grow or change from my patient explanation or demonstration. He can't help it. Why do I keep trying to explain things? Because I want him to stay in our house - I want to believe he can be left alone - and down deep, I know I think something might click. He'll get why it's important to make sure the water is turned off or why he can't just throw things away because he thinks it's garbage or why he shouldn't sign up for things he gets through the mail. I want him to understand his health insurance that starts in January is different than what he has now. I don't want to keep telling him over and over and over again. Because I guess I am not a tolerant person. I'm mad that the most cherished parts of the man I fell in love with and married and raised three wonderful children with have been stolen away by this disease. I'm mad that it makes me feel annoyed at him. I'm mad that I can't be the caregiver I want to be. I'm mad that there aren't any more KODAK moments - that I can't create good memories with him. At the beginning of this journey, just over a year ago, I pledged to make the most of each day - as it would most likely be his best day of the rest of his life as the disease progressed - but I haven't succeeded. I haven't been able to believe that I am fortunate that he is with us. Because he isn't.
Believe it or not, I had a nice Christmas. This is my place to vent, to get it all out, so day to day I can try again. It's a roller coaster ride - and I am still in a good place with myself, which makes it even more important to me to be honest with myself about how I'm feeling and how I'm handling it, and have a place to let it all out. I am not looking for pity. This is what it is. The blog is my place to put it all out there, raw as it may be, so I can keep going.
There's a poem I saw on Facebook in a post from the Association of FTD. I believe it was written by a woman who recently lost her husband to FTD. It very much hit home for me. I've copied it here.
The Thief
A poem by Lori Ruhlman
Well intentioned people say
"May your memories sustain you."
But they don't know loss by dementia.
They don't know that there is a thief that sometimes comes before death:
A Thief that takes someone inch-by-inch, month-by-month, year-by-long-year.
And while this thief steals greedily from the person with FTD,
it slips in and steals from those around him too,
taking their memories away one-by-one.
It reaches in and takes the finest details of what they held dear:
The feel of a touch or the sound of a laugh. And more.
It takes memories for which there is no vocabulary, feelings too profound for labels
until all that remains are images like the flat one-dimensional memories found in a picture book.
So for this first holiday season without him
we won't look longingly at his empty chair at the dinner table or feel that acute but beautiful pain of his closeness
as though he just left the room.
He is much, much too far away.
When well-intentioned people say "May your memories sustain you,"
they unknowingly shine a light on my biggest failure, my biggest loss,
because they don't know
how long and hard I tried
to hold onto the memories,
even as the thief came into the room.
Friday, November 6, 2015
Chapter 31 Rita's story
I received an email from Rita two days ago, and she has given me permission to share her story.
"My husband Joe was diagnosed in 2014 with CBD. He has fallen 6 times since 2012. Three weeks ago he began talking about other people in the house and he does not know I am his wife or my name. We have been married 54 years and I am heartsick. He is incontinent and cannot dress himself. He gets P/T twice a week. We have no help as of now. His doctor is at Cornell in NYC. He was given 12.5 of Seroquel beginning today. He takes 75 mg of Effexor. He wore the Exelon patch for a few months. Discontinued it. He was nasty using it.
It is 25 days today that he does not know me."
My heart goes out to her. She needs those of us who can to reach out to her. Please offer your support and any ideas of what you know might be available in the New York City area. Or share your story. Comment here and I'll make sure she knows people are thinking of her.
Anyone else out there who is looking for help and support, a phone number was shared with me today for the ElderCare locater line. 1-800-677-1116 If you call this number, they should be able to put you in touch with the closest Area Agency on Aging. Every state has them. The Area Agency on Aging should be able to help you with what community resources may be available to you for support and help. I don't think anyone can make it through this journey with out the support of others on a similar journey. I'm not as far down the road as Rita is. It is scary of think of what's in store, and easier to not think about it right now. But I can't ignore the fact that I'll be there one day, and I hope others will be helping me. I have to do what I can! Because I want people to do what they can to help me when the time comes.
On facebook, someone posted something about Alzheimer's Disease & Dementia. They called it "Public Enemy #1." Here is what it said:
You can miss someone who died, you can miss someone who moved away, but the worst is when you miss someone you see everyday.
Today, for Rita, she is going through some dark days. She is missing Joe. Today is the 25th day that he doesn't know her. I hope you can take a minute to share something with her, for every reader of this blog who is dealing with a loved one with some form of FTD, whether it be the behavior variant type that my husband suffers from, or CBD , or some other form. If you know of resources in Rita's area, please let me know. If you have a story to share, please do! You can email me at sorodftd@gmail.com, or use the comment section here to share with all. THANK YOU!
More later.
"My husband Joe was diagnosed in 2014 with CBD. He has fallen 6 times since 2012. Three weeks ago he began talking about other people in the house and he does not know I am his wife or my name. We have been married 54 years and I am heartsick. He is incontinent and cannot dress himself. He gets P/T twice a week. We have no help as of now. His doctor is at Cornell in NYC. He was given 12.5 of Seroquel beginning today. He takes 75 mg of Effexor. He wore the Exelon patch for a few months. Discontinued it. He was nasty using it.
It is 25 days today that he does not know me."
My heart goes out to her. She needs those of us who can to reach out to her. Please offer your support and any ideas of what you know might be available in the New York City area. Or share your story. Comment here and I'll make sure she knows people are thinking of her.
Anyone else out there who is looking for help and support, a phone number was shared with me today for the ElderCare locater line. 1-800-677-1116 If you call this number, they should be able to put you in touch with the closest Area Agency on Aging. Every state has them. The Area Agency on Aging should be able to help you with what community resources may be available to you for support and help. I don't think anyone can make it through this journey with out the support of others on a similar journey. I'm not as far down the road as Rita is. It is scary of think of what's in store, and easier to not think about it right now. But I can't ignore the fact that I'll be there one day, and I hope others will be helping me. I have to do what I can! Because I want people to do what they can to help me when the time comes.
On facebook, someone posted something about Alzheimer's Disease & Dementia. They called it "Public Enemy #1." Here is what it said:
You can miss someone who died, you can miss someone who moved away, but the worst is when you miss someone you see everyday.
Today, for Rita, she is going through some dark days. She is missing Joe. Today is the 25th day that he doesn't know her. I hope you can take a minute to share something with her, for every reader of this blog who is dealing with a loved one with some form of FTD, whether it be the behavior variant type that my husband suffers from, or CBD , or some other form. If you know of resources in Rita's area, please let me know. If you have a story to share, please do! You can email me at sorodftd@gmail.com, or use the comment section here to share with all. THANK YOU!
More later.
Wednesday, November 4, 2015
Chapter 30 A New Chapter
It's been awhile since I have posted. I've received an email from a woman with a loved one with the CBD form of FTD. I'm waiting to hear back from her about sharing her story. She could use some help and support, and I'm hoping someone reading her story maybe able to do that for her, including the folks at the Association of Frontotemporal Degeneration.
I'm in a better place these days. It's been over a year since my husband's diagnosis. Do I notice change? I do. His OCD tendencies, "industrial behavior", are far more evident. His inability to comprehend written materials that come in the mail seems more serious. Changes are subtle, and yet sometimes seem glaring. He is grumpier. Gets frustrated a little more easily. I am not letting him drive at all now. He is still suffering from the double vision, yet the latest visit to the ophthalmologist last week indicates it continues to get better. The doctor believes it should be gone by the end of December. However, as always, something else has showed up. Dave apparently now has a hemorrhage in that same eye. So that will get checked again the first week of December.
We also had his latest scan with the neurosurgeon to check on his chronic subdural hematoma. It continues to shrink and isn't causing any apparent problems. However ...... I'm getting tired of saying that!!! However, he is concerned about the 4th nerve palsy, considering the atrophy in his brain, so we'll see the neurosurgeon in April for another CT scan.....never ending.
I've started a new job after 30 years with the same non-profit. It was time for a change. I needed something adventurous and new in my life. Something positive. It was a great move. I'm really enjoying learning about a new organization. I took a cut in pay, and chose a cut in hours - 30 to 35 a week - and while things might be tight financially, I am feeling such relief. I didn't know how poorly I felt, how depressed I was about life, until I started feeling SO good about six weeks ago. I am so glad I took a leap of faith, took a risk. It feels like a whole new chapter of life. With the stress at work and the stress at home, I just could not take it anymore. So now that work is manageable and I'm looking forward to it each day, and I really enjoy all the people I work with, home life has also improved greatly. I'm even looking at adopting a beautiful dog that needs a home. I feel she will be good company for my husband during the day, and the routine of her care will fit right in with my husband's ordered schedule he keeps. And she'll be good company for me when I get home each day! Maybe even greet me at the door! We have a trial visit with her this weekend, and that's another thing I'm very excited about!
Life feels good. I feel strong. I feel positive. It's amazing. So it's time for me to start spreading it around. I want to find a way to contribute to the efforts of awareness and support for FTD. I'm ready to get back to it! I'm checking into trying to get a support group started locally as there is nothing currently that I've been able to find.
We'll see how long this part of the ride lasts! But it sure feels good to be on the upswing for a change. Stay tuned!
I'm in a better place these days. It's been over a year since my husband's diagnosis. Do I notice change? I do. His OCD tendencies, "industrial behavior", are far more evident. His inability to comprehend written materials that come in the mail seems more serious. Changes are subtle, and yet sometimes seem glaring. He is grumpier. Gets frustrated a little more easily. I am not letting him drive at all now. He is still suffering from the double vision, yet the latest visit to the ophthalmologist last week indicates it continues to get better. The doctor believes it should be gone by the end of December. However, as always, something else has showed up. Dave apparently now has a hemorrhage in that same eye. So that will get checked again the first week of December.
We also had his latest scan with the neurosurgeon to check on his chronic subdural hematoma. It continues to shrink and isn't causing any apparent problems. However ...... I'm getting tired of saying that!!! However, he is concerned about the 4th nerve palsy, considering the atrophy in his brain, so we'll see the neurosurgeon in April for another CT scan.....never ending.
I've started a new job after 30 years with the same non-profit. It was time for a change. I needed something adventurous and new in my life. Something positive. It was a great move. I'm really enjoying learning about a new organization. I took a cut in pay, and chose a cut in hours - 30 to 35 a week - and while things might be tight financially, I am feeling such relief. I didn't know how poorly I felt, how depressed I was about life, until I started feeling SO good about six weeks ago. I am so glad I took a leap of faith, took a risk. It feels like a whole new chapter of life. With the stress at work and the stress at home, I just could not take it anymore. So now that work is manageable and I'm looking forward to it each day, and I really enjoy all the people I work with, home life has also improved greatly. I'm even looking at adopting a beautiful dog that needs a home. I feel she will be good company for my husband during the day, and the routine of her care will fit right in with my husband's ordered schedule he keeps. And she'll be good company for me when I get home each day! Maybe even greet me at the door! We have a trial visit with her this weekend, and that's another thing I'm very excited about!
Life feels good. I feel strong. I feel positive. It's amazing. So it's time for me to start spreading it around. I want to find a way to contribute to the efforts of awareness and support for FTD. I'm ready to get back to it! I'm checking into trying to get a support group started locally as there is nothing currently that I've been able to find.
We'll see how long this part of the ride lasts! But it sure feels good to be on the upswing for a change. Stay tuned!
Saturday, August 15, 2015
Chapter 29 Special Request
Left 4th nerve palsy. That's the diagnosis.
I received a call back from the neurologist's office early the next morning. It was felt this was not related at all to his FTD. They did not have a name to offer me for an ophthalmologist. So I contacted our family doctor's office - they suggested a practice to call - which I did. And I was able to get an appointment that afternoon. Filled out all the paperwork - saw an optician, optometrist, then the ophthalmologist. It was actually very interesting. They were able to determine that when Dave would tilt his head a little to the right and up, the double vision would go away. Tilt it to the left and up - much worse double vision.
There is nothing to do for it - just wait it out. We have a follow up in two weeks and it is expected it will be gone by then.
Again, I was told it has nothing to do with his FTD or brain atrophy. Just a random fluke. I guess I feel like he has an awful lot of random flukes happen in his life. It seems his body has some built in magnetism to attract strange random happenings. A wound that won't heal, gets infected, and requires antibiotics. A routine colonoscopy that just doesn't go quite right. That's just in the last month. And now this.
I am very relieved the double vision is not related to a stroke or aneurysm or cancer or any permanent problem with his eyes. But it is very hard for me to believe it has NO relationship to his FTD. Perhaps I just attribute everything to that. I've been trying to research "4th nerve palsy" - it is common after head trauma - which he did have in the last year. I WISH I KNEW MORE ABOUT THE BRAIN!
So my special request. I guess I'm a not so wise fish - I'm looking for my porpoise - people traveling a similar journey - or with information and experiences to share. I am feeling very alone in this journey right now. I need some inspiration. I would like someone reading my blog who has a loved one with FTD to share their story or their suggestions or information they may have. If you send your story you'd like to share to me by e-mail, I would like to post it here in my blog. I assume that most people reading this are going through something similar or looking for information or perhaps even in the field of neurology and cognitive function and decline. COME JOIN THE TEA PARTY! I have no sense if my experience is like others, of what's to come. Maybe this could be a place where several experiences are shared, whether through comments or as a guest writer.
Interested readers may contact me at sorod.ftd@gmail.com. I hope to hear from you and share your thoughts and experiences here for others to read. It would be only what you wish to share. You can even tell me what you want as the title of the chapter. Thank you.
Later.
I received a call back from the neurologist's office early the next morning. It was felt this was not related at all to his FTD. They did not have a name to offer me for an ophthalmologist. So I contacted our family doctor's office - they suggested a practice to call - which I did. And I was able to get an appointment that afternoon. Filled out all the paperwork - saw an optician, optometrist, then the ophthalmologist. It was actually very interesting. They were able to determine that when Dave would tilt his head a little to the right and up, the double vision would go away. Tilt it to the left and up - much worse double vision.
There is nothing to do for it - just wait it out. We have a follow up in two weeks and it is expected it will be gone by then.
Again, I was told it has nothing to do with his FTD or brain atrophy. Just a random fluke. I guess I feel like he has an awful lot of random flukes happen in his life. It seems his body has some built in magnetism to attract strange random happenings. A wound that won't heal, gets infected, and requires antibiotics. A routine colonoscopy that just doesn't go quite right. That's just in the last month. And now this.
I am very relieved the double vision is not related to a stroke or aneurysm or cancer or any permanent problem with his eyes. But it is very hard for me to believe it has NO relationship to his FTD. Perhaps I just attribute everything to that. I've been trying to research "4th nerve palsy" - it is common after head trauma - which he did have in the last year. I WISH I KNEW MORE ABOUT THE BRAIN!
So my special request. I guess I'm a not so wise fish - I'm looking for my porpoise - people traveling a similar journey - or with information and experiences to share. I am feeling very alone in this journey right now. I need some inspiration. I would like someone reading my blog who has a loved one with FTD to share their story or their suggestions or information they may have. If you send your story you'd like to share to me by e-mail, I would like to post it here in my blog. I assume that most people reading this are going through something similar or looking for information or perhaps even in the field of neurology and cognitive function and decline. COME JOIN THE TEA PARTY! I have no sense if my experience is like others, of what's to come. Maybe this could be a place where several experiences are shared, whether through comments or as a guest writer.
Interested readers may contact me at sorod.ftd@gmail.com. I hope to hear from you and share your thoughts and experiences here for others to read. It would be only what you wish to share. You can even tell me what you want as the title of the chapter. Thank you.
Later.
Wednesday, August 12, 2015
Chapter 29 "No wise fish would go anywhere without a porpoise."
Why the title of this chapter? I don't know. Maybe because it's the middle of the night. Maybe because it makes about as much sense as my life and this disease.
Can't sleep. Just when I thought things were on more of an even keel, my husband began experiencing double vision mid morning today. Who do I call? Our neurologist? An eye doctor? Our family doctor? The neurosurgeon?
I started with the neurologist and left a message with her assistant, asking if this was probably related to his FTD and brain atrophy and who should I call? Then called his eye doctor to ask their opinion - was told it sounded neurological and to wait to hear back from our neurologist. Left a second message for the neurologist. Later called our primary care physician's office - who, by the way, recently moved to an administrative position so we have a brand new doctor to start over with in the practice - and spoke with the administrative assistant there. She was very helpful and indicated an urgent care center or the ER was the way to go, as it was late in the afternoon and they could not fit my husband in today. She arranged for us to go to a same day center with imaging services on site. This center would have access to my husband's records, which sure would make things easier.
We headed over there and got in quickly. Ended up getting a CT scan to make sure it wasn't the subdural hematoma growing and rearing its ugly head again. That came back looking pretty good and ruled out that. So what now? Tomorrow - or I guess this morning - I need to get him in to see an ophthalmologist.
While we were in the waiting room, I googled his symptoms on my phone. My gut feeling is that the brain atrophy had just finally chipped away at a particular brain cell, turning off some particular function in his brain. The double vision is not side by side - it is up and down. So he sees, for instance, a road sign right over top of the same sign. When he covers one eye - either one - his vision is fine. When he tilts his head to the right, no double vision. When he tilts his head to the left, no double vision. Weird. I asked him all these questions while we were waiting for the CT scan. These were all from a website I'd googled.
At home, I googled "brain atrophy and double vision" and got a new set of scary things. I think it all points to progression of his disease. After a year of no real obvious new symptoms since diagnosis, here it is. Ugh.
I hadn't posted in a while, but when thinking about what to write about next, I thought of how we didn't have to have a six month follow-up with our neurologist and how that made me feel very alone in this journey with FTD. I thought about how we are on an "as needed" basis - well, frankly, I think we need at least every six months - at least I do. I constantly have more questions, and I think I need the support. I'm not sure I'll notice changes - not sure what "significant" changes are - mostly not sure I want to wonder about all this alone. I guess now we are seeing a significant change - at least that's what I think we're going to find out. I think we're ruling causes out at this point. And I may be jumping the gun. But I don't know.
So - couldn't sleep - too many "what if"'s rolling around in my head. So I'm on my blog - my journal of this ride. More tomorrow.
By the way - my favorite new role - GRANDMA! To a beautiful little boy born July 19. What a joy!
Can't sleep. Just when I thought things were on more of an even keel, my husband began experiencing double vision mid morning today. Who do I call? Our neurologist? An eye doctor? Our family doctor? The neurosurgeon?
I started with the neurologist and left a message with her assistant, asking if this was probably related to his FTD and brain atrophy and who should I call? Then called his eye doctor to ask their opinion - was told it sounded neurological and to wait to hear back from our neurologist. Left a second message for the neurologist. Later called our primary care physician's office - who, by the way, recently moved to an administrative position so we have a brand new doctor to start over with in the practice - and spoke with the administrative assistant there. She was very helpful and indicated an urgent care center or the ER was the way to go, as it was late in the afternoon and they could not fit my husband in today. She arranged for us to go to a same day center with imaging services on site. This center would have access to my husband's records, which sure would make things easier.
We headed over there and got in quickly. Ended up getting a CT scan to make sure it wasn't the subdural hematoma growing and rearing its ugly head again. That came back looking pretty good and ruled out that. So what now? Tomorrow - or I guess this morning - I need to get him in to see an ophthalmologist.
While we were in the waiting room, I googled his symptoms on my phone. My gut feeling is that the brain atrophy had just finally chipped away at a particular brain cell, turning off some particular function in his brain. The double vision is not side by side - it is up and down. So he sees, for instance, a road sign right over top of the same sign. When he covers one eye - either one - his vision is fine. When he tilts his head to the right, no double vision. When he tilts his head to the left, no double vision. Weird. I asked him all these questions while we were waiting for the CT scan. These were all from a website I'd googled.
At home, I googled "brain atrophy and double vision" and got a new set of scary things. I think it all points to progression of his disease. After a year of no real obvious new symptoms since diagnosis, here it is. Ugh.
I hadn't posted in a while, but when thinking about what to write about next, I thought of how we didn't have to have a six month follow-up with our neurologist and how that made me feel very alone in this journey with FTD. I thought about how we are on an "as needed" basis - well, frankly, I think we need at least every six months - at least I do. I constantly have more questions, and I think I need the support. I'm not sure I'll notice changes - not sure what "significant" changes are - mostly not sure I want to wonder about all this alone. I guess now we are seeing a significant change - at least that's what I think we're going to find out. I think we're ruling causes out at this point. And I may be jumping the gun. But I don't know.
So - couldn't sleep - too many "what if"'s rolling around in my head. So I'm on my blog - my journal of this ride. More tomorrow.
By the way - my favorite new role - GRANDMA! To a beautiful little boy born July 19. What a joy!
Tuesday, July 7, 2015
Chapter 28 "Who in the world am I? Ah, that's the great puzzle."
I'm struggling with my every day role, or should I say roles, in my life now that for the most part things are back to normal. Though I'm a wife, it's not in any typical sense anymore - not a partnership - so I'm trying to work that out. And though I'm a mother, it's different with grown children and not a daily role. And I'm a sister, but after months of dependence on my sisters and brothers to make it through the days, weeks, months, that is not the main headliner these days. The active role of daughter has been retired. Yet "orphan" doesn't quite fit. I work forty hours a week, but that role has changed over the last several years after a merger, and has changed significantly over the last six months, so I'm still figuring that one out. In my 30 years there, I climbed the ladder from the bottom to the top, and now I'm going down the other side - by choice, at least I think it was my choice! - giving up any leadership role or supervisory role in order to allow more energy for the rest of my life roles. I guess I think my starring role right now is caregiver.
I'm back to focusing on my husband and his disease. Starting to research again. We are coming up on a year in July since his first visit to his neurologist and in August, his diagnosis. After living with this knowledge for almost a year, I find myself wondering what to do now. Dave doesn't need care in the typical way. His daily living skills are in tact. The "symptoms" taken one by one are not uncommon among many people, and sometimes I find myself second guessing his diagnosis. Maybe he's fine and just getting old. Maybe there is no reason for concern. Maybe his brain had atrophy a long time ago and has just been holding for along time and will continue to do so. His decline has seemed slow. But as I have more time to spend with him and observe him, I know there's something missing, a part of him is gone. Or maybe it's that he seems to be in his own very small world and he doesn't "need" us to be satisfied with his life. I just don't get it. It is so frustrating that he would be "happy" with how things are - watching game shows all day; no significant interaction or conversation with others, including me. No depth to his life. But maybe that's my problem - not his. Maybe it's me reflecting on things that are missing from MY life - I don't get to sit and watch tv all day; I don't have significant interaction with him. I don't feel a depth to our relationship. So it's missing for me - but not for him. I don't know.
Over the 4th of July, we went to the parade and sat with family and friends, and later went to a block party at a neighbor's. There was a beautiful little girl - 7 months old - that he was commenting on - and then he said he doesn't remember when our children were that small. That stabs at my heart, brings tears to my eyes. I know it's a filing problem in his brain - if I find the right prompt or trigger - or some pictures - he'll be able to find the memories - it's not that they are gone - just misfiled. I need to get all our photos in photo albums so he can look through them and find those memories. That's the kind of care I need to provide. In conversation with some new neighbors, Dave was talking Spanish, trying to clarify who lives in which house - in my mind, he seemed a little eccentric, a little loud, a little over the top. And when he left the gathering, for some reason, I felt the need to explain to these new neighbors that he has a degenerative brain disease. One gentleman said no need to explain, Dave was perfectly charming. But what I witnessed was their chuckles at some things Dave said, some comments that somehow pricked me. In thinking back, if I wasn't aware that Dave had a disease, if I hadn't known him for 38 years and how he used to be, maybe I wouldn't have felt he was odd. I guess I was embarrassed. And that is sad. One of the gentleman made the comment that it was a good thing Dave had me along, because he was constantly having me fill in the parts of conversations he wasn't sure of - like how many years we've lived in our house, how many years we've been married, how long since he worked, when we moved here, what I do for work, etc. That's not so unusual, right? It is more the way he says it. Another gentleman commented it was like watching a comedy show - they were not being unkind or anything like that. I just took it that way. A little sensitive, I guess. I guess one of the awful things about the disease is right now there is no obvious symptoms, like an arm missing, or a hole in his head, or whatever. The whole issue right now for me is that he's not the man he used to be. So much of the depth that made him who he was seems to be gone. Yes, he is still a kind gentle man. But a lot of him is missing. Or I'm missing those parts of him that aren't evident any more. But that's normal, right?? People change. I don't know. Maybe it is all just normal progression of aging. Not.
I guess I just wait. And watch. And wonder what's to come. Part of me wishes things would move along, so I would have validation of the diagnosis, validation of progression. Why would I want that? Part of me wishes I didn't know about this diagnosis. Have I given up hope? Am I expecting less of him, and in return getting less?
In my heart, I know he has this disease. I know the information I read about the behavioral variant type of Frontotemporal Degeneration fits so amazingly to his symptoms, it must be true. But I don't know what to do for him - and I miss him - the full person. It brings to mind our wedding vows - I take you to be my husband, loving you now and always. I will love you when we are together and when we are apart, when life is peaceful and when it is in disorder, when I am proud of you and when I am disappointed in you. I promise to be open and honest with you always, and share your dreams and ambitions and help you to fulfil them. I make this commitment of love, faith, and hope, believing that God is in the midst of it all. Nothing about "in sickness and in health" stuck in there, but the commitment is there. The sickness right now has resulted in no dreams or ambitions - he just doesn't have any. Life is not really peaceful, but it isn't in disorder. How can I be disappointed in him? This isn't his fault. This whole middle ground - this neutral territory - this waiting - I am not certain what to do with it. I'm rambling. I need to be thankful for each day, and thankful that he is maintaining and stable.
As far as my everyday life - I'm feeling less unbalanced - much lighter. Making a quilt for my first grandchild, due in a couple of weeks. Doing some things I enjoy. Laughing more. That is feeling good. I need to keep moving forward while I can - do some things for myself - and not feel guilty about that. It will make me a better caregiver. Ugh - I don't like that word - caregiver - that seems one role I'm not certain I can manage.
I'm back to focusing on my husband and his disease. Starting to research again. We are coming up on a year in July since his first visit to his neurologist and in August, his diagnosis. After living with this knowledge for almost a year, I find myself wondering what to do now. Dave doesn't need care in the typical way. His daily living skills are in tact. The "symptoms" taken one by one are not uncommon among many people, and sometimes I find myself second guessing his diagnosis. Maybe he's fine and just getting old. Maybe there is no reason for concern. Maybe his brain had atrophy a long time ago and has just been holding for along time and will continue to do so. His decline has seemed slow. But as I have more time to spend with him and observe him, I know there's something missing, a part of him is gone. Or maybe it's that he seems to be in his own very small world and he doesn't "need" us to be satisfied with his life. I just don't get it. It is so frustrating that he would be "happy" with how things are - watching game shows all day; no significant interaction or conversation with others, including me. No depth to his life. But maybe that's my problem - not his. Maybe it's me reflecting on things that are missing from MY life - I don't get to sit and watch tv all day; I don't have significant interaction with him. I don't feel a depth to our relationship. So it's missing for me - but not for him. I don't know.
Over the 4th of July, we went to the parade and sat with family and friends, and later went to a block party at a neighbor's. There was a beautiful little girl - 7 months old - that he was commenting on - and then he said he doesn't remember when our children were that small. That stabs at my heart, brings tears to my eyes. I know it's a filing problem in his brain - if I find the right prompt or trigger - or some pictures - he'll be able to find the memories - it's not that they are gone - just misfiled. I need to get all our photos in photo albums so he can look through them and find those memories. That's the kind of care I need to provide. In conversation with some new neighbors, Dave was talking Spanish, trying to clarify who lives in which house - in my mind, he seemed a little eccentric, a little loud, a little over the top. And when he left the gathering, for some reason, I felt the need to explain to these new neighbors that he has a degenerative brain disease. One gentleman said no need to explain, Dave was perfectly charming. But what I witnessed was their chuckles at some things Dave said, some comments that somehow pricked me. In thinking back, if I wasn't aware that Dave had a disease, if I hadn't known him for 38 years and how he used to be, maybe I wouldn't have felt he was odd. I guess I was embarrassed. And that is sad. One of the gentleman made the comment that it was a good thing Dave had me along, because he was constantly having me fill in the parts of conversations he wasn't sure of - like how many years we've lived in our house, how many years we've been married, how long since he worked, when we moved here, what I do for work, etc. That's not so unusual, right? It is more the way he says it. Another gentleman commented it was like watching a comedy show - they were not being unkind or anything like that. I just took it that way. A little sensitive, I guess. I guess one of the awful things about the disease is right now there is no obvious symptoms, like an arm missing, or a hole in his head, or whatever. The whole issue right now for me is that he's not the man he used to be. So much of the depth that made him who he was seems to be gone. Yes, he is still a kind gentle man. But a lot of him is missing. Or I'm missing those parts of him that aren't evident any more. But that's normal, right?? People change. I don't know. Maybe it is all just normal progression of aging. Not.
I guess I just wait. And watch. And wonder what's to come. Part of me wishes things would move along, so I would have validation of the diagnosis, validation of progression. Why would I want that? Part of me wishes I didn't know about this diagnosis. Have I given up hope? Am I expecting less of him, and in return getting less?
In my heart, I know he has this disease. I know the information I read about the behavioral variant type of Frontotemporal Degeneration fits so amazingly to his symptoms, it must be true. But I don't know what to do for him - and I miss him - the full person. It brings to mind our wedding vows - I take you to be my husband, loving you now and always. I will love you when we are together and when we are apart, when life is peaceful and when it is in disorder, when I am proud of you and when I am disappointed in you. I promise to be open and honest with you always, and share your dreams and ambitions and help you to fulfil them. I make this commitment of love, faith, and hope, believing that God is in the midst of it all. Nothing about "in sickness and in health" stuck in there, but the commitment is there. The sickness right now has resulted in no dreams or ambitions - he just doesn't have any. Life is not really peaceful, but it isn't in disorder. How can I be disappointed in him? This isn't his fault. This whole middle ground - this neutral territory - this waiting - I am not certain what to do with it. I'm rambling. I need to be thankful for each day, and thankful that he is maintaining and stable.
As far as my everyday life - I'm feeling less unbalanced - much lighter. Making a quilt for my first grandchild, due in a couple of weeks. Doing some things I enjoy. Laughing more. That is feeling good. I need to keep moving forward while I can - do some things for myself - and not feel guilty about that. It will make me a better caregiver. Ugh - I don't like that word - caregiver - that seems one role I'm not certain I can manage.
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