It's been a good couple of weeks. I had ten days off of work - and my son's family came to visit with my wonderful grandson - it was SO much fun. He's ten months old, and such a happy guy. You can't help but smile! And it brought out a side of Dave we haven't seen for a while. He was quite taken with the little guy. He didn't interact a lot with him, but would notice him and called him smiley. It was very sweet.
He also interacted more with my son - Michael noted that his dad seemed much better - he wasn't certain if it was because I was less stressed than a year ago, or that Dave is much recovered at this point from his surgeries early last year. Both are true - I'm less stressed, and Dave is fully recovered from the surgeries. Dave did seem more engaged. We had a few awkward moments when people were visiting to see Michael, Jordyn, and the baby - my niece has three children that were here for a bit - the dog was a little excited and I asked that Dave put the dog outside in the back - Dave suggested in a loud voice that maybe the kids should leave. Awkward. My niece was very gracious and took it well. Even gave him a ride to church a little bit after that!
A few weeks before their visit, I discovered when talking with a financial planner that considering Dave's disability, his life insurance policy may have a waiver of premium in case of disability - I checked, and it did! So I've been trying to gather the paperwork from our neurologist - it's a gray area because there's no date to pinpoint when it all started - not like a car accident or a broken leg - I'm hoping they'll go with what Social Security came up with - April 2013 - which means we'd get about three years of premium back. That would be helpful. The waiver of premium ends this next October, so hopefully this gets wrapped up soon. I hate bugging the neurologist's office - but it's been a couple of weeks and I don't have anything back from them yet. That will be another call to make this week. I need a personal assistant!!!
Last weekend I attended a conference in Philadelphia on Frontotemporal Degeneration put on by the Penn FTD Center, a part of the University of Pennsylvania. I really enjoyed the long drive - had an audio book or two - it was great! There's something about being in a car on a long trip - a feeling of freedom - to do what I want when I want - a nice break. And the conference was very interesting. I didn't get a big chance to talk to other caregivers - but the information was validating. They reviewed the latest in research, and several experts gave overviews of each of the kinds of FTD as well as common symptoms. A caregiver and her son spoke in the afternoon - her husband was diagnosed back in the 90's with Pick's disease - he died within four years. She became a founding member of the Association for Frontotemporal Degeneration. She's served them for many years as a volunteer, and runs support groups in her area. Very impressive and inspiring. Also very sobering. Several other professionals spoke about the caregiver taking care of themselves; tips for tracking behaviors of your loved one; and the importance of taking care of legal aspects related to the future.
I had the chance to speak with someone from the Penn FTD Center whom I'd been communicating with by email about getting Dave involved with their studies. I'm hoping to get him in there for an assessment and testing for the research. They consider themselves the best - and they do ONLY deal with FTD. They don't want reports from other doctors - they prefer to start from scratch and draw their own conclusions. They seemed a little intrigued that Dave is atypical in that his onset would appear to have been at least thirteen or fourteen years ago when he began getting fired from one job after another, he has reportedly significant atrophy, and yet his progression has been very slow; plus he has had many other things going on in the past year with the vision problems, and Raynaud's, and more recently the psoriasis. I'm excited to have his diagnosis confirmed, and also to hear their opinions on his progression compared to the hundreds of folks they have seen. I also want Dave to be a part of their database and studies. Contributing in some way. Hopefully sometime this summer, that will happen. The Penn FTD Center is considered one of three centers of excellence for this disease. So - we're forging ahead.
The journey continues - I feel mine is easy compared to many, at least for now. It does get lonely - and frustrating. Sometimes I think he's beginning to have trouble finding words - but I'm not sure if it's what all of us do sometimes as we get older, or a part of his disease. So I'm starting to write examples down and the date, so I can see if it's once a week, or every other day. I hate being the recorder of behavior. I want things to be how they were. Like this weekend - a holiday weekend - nice weather - in the long past, we would have had something planned to do for fun - whether a short road trip, or a movie, or a project to work on together. But it is not that way. I still want to do things, but can't count on Dave's "help" - it's not fun anymore - just a chore. And I don't want to do something social with him, because it is also not "fun" - boo hoo for me! Pity party time! It takes away the fun of a long weekend. SO - I NEED TO PLAN FOR MYSELF! I need to plan a project at home I can do by myself realistically, and I guess hire out the other things that need to be done. But where is the money coming from for that??? I'm beginning to feel a pinch - and don't want to start pulling from savings other than for things like the furnace we had to replace a month ago - that's always fun - and the painting of all the trim on the house - long needed. Don't know how long this can last - if this continues for many many years. And how guilty I feel for even saying this. But I'm making considerably less money than my last job, and working fewer hours because I need the flexibility with the hours for his doctor's appointments and so he's not at home so long all alone. I don't know what else to do. Maybe get a second job a couple nights a week - a FUN job. I don't know. I am starting to feel the financial impact of this disease - if Dave had been able to stay at his old job with the county, we would have had the last ten to twelve years making more than twice what we are now, saving for retirement, paying off the parent plus loans ahead of time, six years to playing off our original mortgage - but it's been refinanced, and I'm checking in to refinancing again to see if I can get the payment a little lower to give us some breathing room. AAAARRRRGH! Poor me!
We are doing well - but I have my days when I worry about the future. At least we have a future, right? And it WILL BE a good one. Tomorrow is a good day to have a great day! Thank goodness there is tomorrow. It's supposed to be sunny and beautiful. Can't wait!
Sunday, May 29, 2016
Sunday, April 17, 2016
Chapter 35 "Birds of a feather flock together."
On Monday, we met with Dave's neurologist to go over the results of his MRI. As always, for the initial part of the appointment, Dave completed a mood checklist where he answered yes or no to a list of questions like Do you enjoy your life? Do you enjoy getting up in the morning? Do you cry a lot? He also completed the SAGE, a mini assessment of cognitive abilities. He didn't score badly at all - right on the borderline for mild cognitive impairment. I completed a checklist of behaviors I see in Dave, and whether they never happen, happen occasionally, happen daily but are manageable, or they are a problem. Dave a couple of daily things, but none of them are problems. It seems he is atypical in that considering the onset of this disease for him, his symptoms have not progressed as rapidly as some. He did have some more atrophy, but it was minimal. In this disease, atrophy does not correlate with symptoms. A person with significant atrophy as Dave has may be far more symptomatic, or a person may present with more advanced symptoms than Dave and imaging may show little atrophy. One of the joys of this disease! It is NOT predictable - it is a different adventure for each person. So we continue to just keep on keeping on while we can. It could be 20 years before Dave begins obviously declining, or he could fall off this plateau in a year. Keeps us guessing!
I have been emailing the Penn FTD Center with the University of Pennsylvania to see if Dave could participate in some of their research they have going on, just to feel that we are contributing something to the study of this disease. Dave would first have a clinical appointment with one of the doctors at the Center to be sure participation in the studies is appropriate. One is a biomarker study including a longitudinal FTD study as well as ARTFL, a consortium study that is helping FTD researchers build a public-health level database about FTD to move the science forward. It would involve bloodwork, both DNA and RNA, neurocognitive testing, another MRI apparently research quality, and a lumbar puncture. The lumbar puncture can apparently rule out infections and cancers that mimic FTD. I have no doubts about his diagnosis, but it will all be very interesting! I'm hoping we may also find out if there is any indication Dave has genetic mutations that indicate it could be inherited.
The neurological assessment and lumbar puncture would be billed to insurance as part of the clinical evaluation. So I have to find out if insurance will cover it before committing. I hope it does, because I think it will be interesting and informative, and I'll feel some satisfaction at contributing in some way.
I'm currently planning to go to the Caregive Conference the Penn FTD Center is having in Philadelphia on May 20. It's free - just have to find a place to stay Thursday night before the conference - I'm looking forward to that - to learning more about this disease, and to meet others going through some of the same things.
Dave overall seems well - it just boggles my mind that he can have so many medical issues all at one time - he has FTD, and in the last eight months had 4th nerve palsy with no identified cause; retinal hemorrhaging with no know cause; his Raynaud's Syndrome - an autoimmune disorder where his fingers turn PURPLE and are cold to the touch - has been very evident; and in the last month he has psoriasis - another autoimmune disorder that we discovered on his shin when he was changing out of his gown for the MRI - it looked awful! Took him to the doctor - they at first weren't certain of what it was - but ending up diagnosing psoriasis. Very patchy itchy skin. It has since showed up further up his leg, on his back in three separate patches, on his stomach, and some on his arm. UGH! How can he stand it? A prescription cream was $104, so we have been using an over the counter cortisone cream that seems to be working fine with the itching. But it is crazy! We still have upcoming appointments with the neurosurgeon in the next two weeks, and with the retinal specialist in a month or so. Then I think we're done for awhile!
The weather is beautiful today - sunny - up to 74 degrees - I think it's going to be 80 tomorrow! This kind of weather makes it easier to remember that life is good and I should count my blessings. All in all, a great day. Looking forward to tomorrow! I like this feeling!
I have been emailing the Penn FTD Center with the University of Pennsylvania to see if Dave could participate in some of their research they have going on, just to feel that we are contributing something to the study of this disease. Dave would first have a clinical appointment with one of the doctors at the Center to be sure participation in the studies is appropriate. One is a biomarker study including a longitudinal FTD study as well as ARTFL, a consortium study that is helping FTD researchers build a public-health level database about FTD to move the science forward. It would involve bloodwork, both DNA and RNA, neurocognitive testing, another MRI apparently research quality, and a lumbar puncture. The lumbar puncture can apparently rule out infections and cancers that mimic FTD. I have no doubts about his diagnosis, but it will all be very interesting! I'm hoping we may also find out if there is any indication Dave has genetic mutations that indicate it could be inherited.
The neurological assessment and lumbar puncture would be billed to insurance as part of the clinical evaluation. So I have to find out if insurance will cover it before committing. I hope it does, because I think it will be interesting and informative, and I'll feel some satisfaction at contributing in some way.
I'm currently planning to go to the Caregive Conference the Penn FTD Center is having in Philadelphia on May 20. It's free - just have to find a place to stay Thursday night before the conference - I'm looking forward to that - to learning more about this disease, and to meet others going through some of the same things.
Dave overall seems well - it just boggles my mind that he can have so many medical issues all at one time - he has FTD, and in the last eight months had 4th nerve palsy with no identified cause; retinal hemorrhaging with no know cause; his Raynaud's Syndrome - an autoimmune disorder where his fingers turn PURPLE and are cold to the touch - has been very evident; and in the last month he has psoriasis - another autoimmune disorder that we discovered on his shin when he was changing out of his gown for the MRI - it looked awful! Took him to the doctor - they at first weren't certain of what it was - but ending up diagnosing psoriasis. Very patchy itchy skin. It has since showed up further up his leg, on his back in three separate patches, on his stomach, and some on his arm. UGH! How can he stand it? A prescription cream was $104, so we have been using an over the counter cortisone cream that seems to be working fine with the itching. But it is crazy! We still have upcoming appointments with the neurosurgeon in the next two weeks, and with the retinal specialist in a month or so. Then I think we're done for awhile!
The weather is beautiful today - sunny - up to 74 degrees - I think it's going to be 80 tomorrow! This kind of weather makes it easier to remember that life is good and I should count my blessings. All in all, a great day. Looking forward to tomorrow! I like this feeling!
Saturday, March 12, 2016
Chapter 34 "He was part of my dream, of course - but then, I was part of his dream too!"
We had an appointment with Dave's neurologist this week. I had a long list of questions and concerns to discuss, and we got most of them covered. Dave will have another MRI to compare to his MRI a year ago to see if there are changes. I'm relieved about that. Our doctor is a little surprised there doesn't seem to have been much progression of symptoms over the last year, and she even had a note to herself to consider Alzheimer's as a possible diagnosis at the next visit. But everything continues to indicate FTD even with out the scans that clearly show atrophy in frontal and temporal lobes. Both Dave and I really like his neurologist. She has a wonderful manner and is so supportive and caring. We were disappointed to find out that she is moving out of the state this summer. So we'll start over with a new doctor. Ugh.
I would say there have been subtle changes over the last year, but it's so hard to tell on a day to day basis. Sometimes I think I hear him slurring words a little - but just a handful of times over the last couple of months. He does more often say things like "What do you mean, the basement?" Or repeat back some things I'll ask or say. But again, only a handful of times. He is definitely more reactive about change. I suggested we put the dog leash in the drawer where he puts the bags for when he walks Bella, and he kept taking it out of the drawer and putting it on top saying that's where it goes. He raised his voice about it, which of course made me raise my voice. I pointed out that he opens the drawer every time he takes her for a walk, so could he please try it for a few days. So far, that is working. But he was very very resistant. It's curious. And it's painful to hear his response to questions from the doctor about what he does for enjoyment or fun - watching game shows - Family Feud, Wheel of Fortune, and a few others. I feel I'm failing some how.
He is also losing track of more things in his memory. Some of the things are significant events in raising our children. I've told my children over the years when talking about marriage that a part of that relationship is there is a witness to your life - a person who knows you never put your keys in the same place, or knows which side of the bed you sleep on, or what kind of toothpaste you use. They know if you laugh really loud or if you cry at sentimental movies. I realize I'm losing the witness to my life. He doesn't remember so many of the wonderful times we had when we were first married, living in a basement apartment - I know it probably doesn't sound great, but it was! He doesn't remember the difficulties our first born had sleeping at night and how we'd hold hands in the living room as the baby cried, and I cried. He doesn't remember many of the most important trials and tribulations we went through with our children - and he doesn't remember some of the most joyful moments we had either. In thinking about that, it put into context for me why I often send short brief emails to one of my brothers on a regular basis - just about the weather, or a tv show, or my beautiful grandson. It's someone to witness my life. Sad but true.
Yes, I have many other brothers and sisters that I talk with, and I have my children. And I am blessed to have their support and care. But there's a little hole - no one to make a small comment to in passing; a random thought. When I do it at home, usually the response is an irritated "What? I didn't hear you." Somehow writing it down and sending it through cyberspace, knowing someone will be reading it that hour or day. I don't know. It does something for me. And I think my brother gets it. He doesn't have to respond. But he gets is.
My oldest son, who is 34, is very concerned about the possibility of Dave's FTD being genetic. In fact, I think it crosses his mind at least once a day, and he's said he couldn't ever get married or have children without knowing if he has this or could pass it on. I've looked at the Penn FTD Center website about research they have going on. I plan to contact them - my son is interesting in participating in their familial study - part of it is genetic testing - not for everyone. But he is certain he wants to know, and in some way wants to contribute to the research of this disease. Ideally, I'd like for Dave to get testing to see if he has the genes that indicate it would be genetic - then all my children would know if they need to worry about it or not. My oldest one is the only one who has mentioned it. University of Pennsylvania is also having a caregiver conference in May that I'm going to look at attending. I can't let this disease take me down also. It's going to take my husband, but it's not going to get me. I can't control its course, the financial impact, the emotional impact. But I can try to stay on top of it. I can find glimpses of the old Dave by looking through photos with him and prompting some memories. I'll tell him stories of how things were and sometimes he laughs and talks about it instead of just shrugging his shoulders. I just have to keep going.
More later, after the MRI.
I would say there have been subtle changes over the last year, but it's so hard to tell on a day to day basis. Sometimes I think I hear him slurring words a little - but just a handful of times over the last couple of months. He does more often say things like "What do you mean, the basement?" Or repeat back some things I'll ask or say. But again, only a handful of times. He is definitely more reactive about change. I suggested we put the dog leash in the drawer where he puts the bags for when he walks Bella, and he kept taking it out of the drawer and putting it on top saying that's where it goes. He raised his voice about it, which of course made me raise my voice. I pointed out that he opens the drawer every time he takes her for a walk, so could he please try it for a few days. So far, that is working. But he was very very resistant. It's curious. And it's painful to hear his response to questions from the doctor about what he does for enjoyment or fun - watching game shows - Family Feud, Wheel of Fortune, and a few others. I feel I'm failing some how.
He is also losing track of more things in his memory. Some of the things are significant events in raising our children. I've told my children over the years when talking about marriage that a part of that relationship is there is a witness to your life - a person who knows you never put your keys in the same place, or knows which side of the bed you sleep on, or what kind of toothpaste you use. They know if you laugh really loud or if you cry at sentimental movies. I realize I'm losing the witness to my life. He doesn't remember so many of the wonderful times we had when we were first married, living in a basement apartment - I know it probably doesn't sound great, but it was! He doesn't remember the difficulties our first born had sleeping at night and how we'd hold hands in the living room as the baby cried, and I cried. He doesn't remember many of the most important trials and tribulations we went through with our children - and he doesn't remember some of the most joyful moments we had either. In thinking about that, it put into context for me why I often send short brief emails to one of my brothers on a regular basis - just about the weather, or a tv show, or my beautiful grandson. It's someone to witness my life. Sad but true.
Yes, I have many other brothers and sisters that I talk with, and I have my children. And I am blessed to have their support and care. But there's a little hole - no one to make a small comment to in passing; a random thought. When I do it at home, usually the response is an irritated "What? I didn't hear you." Somehow writing it down and sending it through cyberspace, knowing someone will be reading it that hour or day. I don't know. It does something for me. And I think my brother gets it. He doesn't have to respond. But he gets is.
My oldest son, who is 34, is very concerned about the possibility of Dave's FTD being genetic. In fact, I think it crosses his mind at least once a day, and he's said he couldn't ever get married or have children without knowing if he has this or could pass it on. I've looked at the Penn FTD Center website about research they have going on. I plan to contact them - my son is interesting in participating in their familial study - part of it is genetic testing - not for everyone. But he is certain he wants to know, and in some way wants to contribute to the research of this disease. Ideally, I'd like for Dave to get testing to see if he has the genes that indicate it would be genetic - then all my children would know if they need to worry about it or not. My oldest one is the only one who has mentioned it. University of Pennsylvania is also having a caregiver conference in May that I'm going to look at attending. I can't let this disease take me down also. It's going to take my husband, but it's not going to get me. I can't control its course, the financial impact, the emotional impact. But I can try to stay on top of it. I can find glimpses of the old Dave by looking through photos with him and prompting some memories. I'll tell him stories of how things were and sometimes he laughs and talks about it instead of just shrugging his shoulders. I just have to keep going.
More later, after the MRI.
Sunday, January 31, 2016
Chapter 33 OUR Story
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.
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.
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!
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