So.....a new development. Or maybe not so new. My son told me a similar thing a couple of months ago, but when I talked to Dave, he seemed to understand that shows on TV are not real life. But yesterday, in the afternoon, my husband was watching the SyFy channel - some crazy movie with a giant crocodile or alligator attacking people. He said something about all the people getting eaten. I said, you know that's fake, right? He said, no, it's real - I saw that thing bite two people's heads off. So many people have been killed........
I was a little taken aback! So I explained it was just a story - made up - and that the people were just actors, that it was special effects. He asked how did they make it look so real? Again, I said special effects, and I explained that no actor would ever take a job if they were going to get killed in the part they were playing. I didn't feel like he really believed me! So I was trying to wrap my brain around all this. A little while later, I asked him about Star Wars - it was one of the first movies we saw years ago - I asked him if he thought that was real. He said, that's not real either? Then I said - what about the Harry Potter movies? Hogwarts? Wizardry? Battles with wands! He again said, that's not real either? My response was - it would be really cool if it was real! But no, it's not. He just kept wondering how they make it look so real!
So, my head was spinning. But you know what? For the first time, I was seeing a concrete symptom of his FTD. Everything else - the OCD, the lack of interest in others, the cognitive problems - they have been happening for so long, so gradually, that in the back of my mind, I've wondered if these were just who he was once our kids were grown and gone. I've known there was something wrong, but it was all elusive. And annoying. I admit, it sounds cold and unfeeling, but there are days I'm so tired of making decisions on my own, of having to do everything, give him rides every where, explain so many things to him, fix things he's messed up, get things out of the garbage he's thrown away that shouldn't have been thrown away, worried about all he eats, and on and on. All the things that sometimes people have said "My husband does that, too. Maybe you're making too much of it." But this - there's no denying it - this is new, definitely not normal, and if someone tells me their husband does that also? I'd be giving them some phone numbers and telling them their husband needs help! This is something I know is not subjective - this is "bonkers" - no matter how you look at it. But because I know it's a definitive symptom - and indicates a problem with figuring out what's real or not real - it actually helps me be more compassionate. I know now that things are progressing - it may be small - but it's the first thing that's scary. I start thinking about anyone who might knock on our door when I'm at work; anyone who might call. It brings a new perspective to me about how he looks at the world, how he processes what he hears and sees. We talked a little more today - I was giving him some concrete suggestions on how to tell if what he's seeing on TV is "real" or a story. We talked about different shows - he asked if Wheel of Fortune is real - yes, I said. It's a game show. Most game shows are real. I asked him about Big Bang Theory - he watches a lot of reruns of that - he said, that's real, right? No, I said. Those are actors that have a scripted story they are following, kind of like when our kids did plays in community theater. I asked him about Two and a Half Men (I personally HATE that show) - he thought that might be real also - again, I said no. Tried to tell him what was "real". We watched Dances with Wolves today. I pointed out if you look at the "info" on the TV about the show you're watching, and it lists actors - it's just a story - not happening in real life - no one is dying, or getting eaten, or cursed. I asked him why it didn't worry him if he thought those SyFy movies were real - like five headed sharks, and giant snakes - he said because we don't live near those places, he wasn't worried. I asked about all the vampire movies that are on that channel - he said, well, he doesn't believe in vampires, so he knew those weren't real......go figure. I don't know if he'll retain our discussions - or remember what's real or not real. We'll see. That's an easy one to check periodically. When I asked on the FTD Spouse page on Facebook if others had experienced this, the answer was a resounding yes - some folks' spouses talk to the person in the mirror or won't get undressed with the TV on because the loved one thinks the people on the TV can see them, another thinks two characters on NCIS live down the street from them and are their friends. So Dave is in good company! It is all a wild wild trip! Only in FTD land!
For the first time on this journey, I'm a little concerned about him being home alone when my son goes back to his job in the schools in the fall. I'll just have to be more vigilant, make sure he's got my cell and work number in his wallet, review what to do if he falls or hurts himself...Crazy crazy crazy. Looking foward to our appointment in October with our new neurologist. Starting to make a list of his behaviors, and this will be the strangest and most telling of them all, I have a feeling.
More later. The story continues!
Saturday, August 5, 2017
Sunday, July 23, 2017
Chapter 42 "Sentence first - verdict afterwards."
We celebrated a WONDERFUL wedding last weekend. Dave was able to walk his daughter down the aisle, and dance the father-daughter dance - he was in rare form! He did a little solo breakout that was fun to see! There was a glimpse of the man I fell in love with - we went dancing often when we were dating, and danced alot at our wedding! Late 70's and early 80's - disco!
Dave came back to see Kristin briefly before she was ready to walk down the aisle - I haven't been able to find out if it was his idea to see her, or if someone suggested it to him - but it was very sweet when he stepped through the door and saw her. He was quite overcome with emotion, and told her how beautiful she looked. I don't think he's said anything like that to her for years and years. He appropriately walked her down the aisle - I was holding my breath a little - and he stayed at the reception til the end - it was after midnight when we got home. I had a friend on standby to pick him up if he wanted to leave, but I didn't need to call her. He didn't talk very much to anyone, but he seemed fine throughout the evening! It was a good good weekend.
His 90 year old mother, his brother and two other family members came to the wedding. While he stated he was excited they were coming, he didn't show it. It was gone out of his mind unless I brought it up. I was glad they came. His brother hadn't seen him in about ten years, and it was obvious to him that Dave has troubles. His behavior was ok, considering what it could have been. He still went back to the bedroom rather than sit with them while they were over at the house in the evening, which was a little awkward, but it is what it is. He indicated his brother's grandson who was also visiting "is not family." I explained it to the young man, 14 years old, and I think he "got" it. It can be embarrassing...but that's life right now.
A wedding makes me think all over again about the wedding vows my husband and I spoke 37 years ago. While we didn't exactly say "for better or worse, in sickness and in health", that is what we meant. And when we said that, promised that, pledged that with all our hearts, unless or until it happens, we can't know if we'll be able to do it. I am trying. It's been fifteen years now, even though I didn't know until three years ago what was actually going on. It is so so difficult, and so lonely with this disease. I've lost my best friend, the witness to my life who is the only one who shared so many memories with me. He's still here, but he's empty. Most days I feel like superwoman, and I can do anything. But many days I don't want to do it any more. While the annoyances are pretty minor at this point, some days it drives me mad. I went to a movie last night with my niece - I don't know when I last went to a movie! Dave knew we were going, but my phone vibrated with an incoming call three times in twenty minutes starting at 9:30 pm, and each time he left a message. While a part of me was worried about it being an emergency, most of me figured it was about locking the front door, or my car, or something like that. I didn't answer it. He called a fourth time as we were leaving the movie. I answered. He wondered where I was, and would I be home soon, as he wanted to go to bed but felt he couldn't because of the dog....??? I assured him he could go to bed and the dog would be fine, that I was on my way home. Minor thing, right? It's definitely a new thing - the fact that he didn't realize the dog was fine, that there are times I'm out past nine when he's usually asleep, and everything is fine. But minor. Just breathe.
I was able to get us in with Dr. Scharre, a well regarded neurologist at Ohio Statue University. He's considered the "expert" in central Ohio with FTD, and I've heard him speak a couple of times at different events. We only have to wait until October. I'm hoping we'll get another MRI to see if anything looks different. If everything is the same, I'll know I'm in for a really long slow ride, for who knows how long. Do I want to know that? What can I do with that information? Not a lot. I wish I knew someone who has this similar experience. I feel guilt about wishing things would move along, and guilt that we seem to have it so easy compared to so many. Two people I've spoken with recently are experiencing a much fast progression. I frankly don't know if I can do this for fifteen more years. That is depressing! I should be so happy that things are going slow, but it is seriously sad to live with someone who doesn't really talk to you - doesn't wonder how your day was or how you're feeling. UGH! See? Complain, complain, complain! I need to be positive! Life is good! Tomorrow will be better! At least I'm not dealing with incontinence! Yay!
I feel like FTD is a sentence - doesn't matter how you've lived your life, if you're a saint or a terrible person, if you have friends and family - you just get a life sentence - Dave still thinks nothing is wrong with him, so he is really unaffected by this life sentence. Me, on the other hand? I think about it every single day - and the verdict? That will come afterwards? That's a verdict on me - on how I handle this journey - so I'm going to just keep hanging in there. Vent on this blog when I need to. Cry by myself when I need to. Smile on the outside when I need to. Put one foot in front of the other and continue to hope for more good days than bad. Make plans for things in the future so I have something to look forward to. Planning a little trip for me, whether it's to visit family or go see my grandson, while something to look forward to, also starts the guilt trip, the selfish feeling of doing it without Dave. Still have to figure that part out....inclusion. Working on it. Hanging in there.
Dave came back to see Kristin briefly before she was ready to walk down the aisle - I haven't been able to find out if it was his idea to see her, or if someone suggested it to him - but it was very sweet when he stepped through the door and saw her. He was quite overcome with emotion, and told her how beautiful she looked. I don't think he's said anything like that to her for years and years. He appropriately walked her down the aisle - I was holding my breath a little - and he stayed at the reception til the end - it was after midnight when we got home. I had a friend on standby to pick him up if he wanted to leave, but I didn't need to call her. He didn't talk very much to anyone, but he seemed fine throughout the evening! It was a good good weekend.
His 90 year old mother, his brother and two other family members came to the wedding. While he stated he was excited they were coming, he didn't show it. It was gone out of his mind unless I brought it up. I was glad they came. His brother hadn't seen him in about ten years, and it was obvious to him that Dave has troubles. His behavior was ok, considering what it could have been. He still went back to the bedroom rather than sit with them while they were over at the house in the evening, which was a little awkward, but it is what it is. He indicated his brother's grandson who was also visiting "is not family." I explained it to the young man, 14 years old, and I think he "got" it. It can be embarrassing...but that's life right now.
A wedding makes me think all over again about the wedding vows my husband and I spoke 37 years ago. While we didn't exactly say "for better or worse, in sickness and in health", that is what we meant. And when we said that, promised that, pledged that with all our hearts, unless or until it happens, we can't know if we'll be able to do it. I am trying. It's been fifteen years now, even though I didn't know until three years ago what was actually going on. It is so so difficult, and so lonely with this disease. I've lost my best friend, the witness to my life who is the only one who shared so many memories with me. He's still here, but he's empty. Most days I feel like superwoman, and I can do anything. But many days I don't want to do it any more. While the annoyances are pretty minor at this point, some days it drives me mad. I went to a movie last night with my niece - I don't know when I last went to a movie! Dave knew we were going, but my phone vibrated with an incoming call three times in twenty minutes starting at 9:30 pm, and each time he left a message. While a part of me was worried about it being an emergency, most of me figured it was about locking the front door, or my car, or something like that. I didn't answer it. He called a fourth time as we were leaving the movie. I answered. He wondered where I was, and would I be home soon, as he wanted to go to bed but felt he couldn't because of the dog....??? I assured him he could go to bed and the dog would be fine, that I was on my way home. Minor thing, right? It's definitely a new thing - the fact that he didn't realize the dog was fine, that there are times I'm out past nine when he's usually asleep, and everything is fine. But minor. Just breathe.
I was able to get us in with Dr. Scharre, a well regarded neurologist at Ohio Statue University. He's considered the "expert" in central Ohio with FTD, and I've heard him speak a couple of times at different events. We only have to wait until October. I'm hoping we'll get another MRI to see if anything looks different. If everything is the same, I'll know I'm in for a really long slow ride, for who knows how long. Do I want to know that? What can I do with that information? Not a lot. I wish I knew someone who has this similar experience. I feel guilt about wishing things would move along, and guilt that we seem to have it so easy compared to so many. Two people I've spoken with recently are experiencing a much fast progression. I frankly don't know if I can do this for fifteen more years. That is depressing! I should be so happy that things are going slow, but it is seriously sad to live with someone who doesn't really talk to you - doesn't wonder how your day was or how you're feeling. UGH! See? Complain, complain, complain! I need to be positive! Life is good! Tomorrow will be better! At least I'm not dealing with incontinence! Yay!
I feel like FTD is a sentence - doesn't matter how you've lived your life, if you're a saint or a terrible person, if you have friends and family - you just get a life sentence - Dave still thinks nothing is wrong with him, so he is really unaffected by this life sentence. Me, on the other hand? I think about it every single day - and the verdict? That will come afterwards? That's a verdict on me - on how I handle this journey - so I'm going to just keep hanging in there. Vent on this blog when I need to. Cry by myself when I need to. Smile on the outside when I need to. Put one foot in front of the other and continue to hope for more good days than bad. Make plans for things in the future so I have something to look forward to. Planning a little trip for me, whether it's to visit family or go see my grandson, while something to look forward to, also starts the guilt trip, the selfish feeling of doing it without Dave. Still have to figure that part out....inclusion. Working on it. Hanging in there.
Saturday, June 3, 2017
Chapter 41 "If you don't know where you are going, any road can take you there."
It's been a long time, but a busy last five months. We sold our house we'd lived in for 26 years, and purchased a one floor ranch about four miles from our old house. Not sure why I'm saying "we", because it felt very much like a one woman effort! Dave did his best to help, but just doesn't have it in him to participate in packing and unpacking. We moved in the end of March - still have boxes to go through, but we're getting there. It's been nice to have the projects, like painting the kitchen cabinets, figuring out where to hang pictures, best place for furniture. Fun!
I was very concerned with some behaviors I observed during the whole process of moving and settling in since I was spending quite a bit of time with Dave - more than usual on a daily basis. He didn't seem to get that we had to take everything out of the house - we couldn't leave stuff we didn't want to use anymore! He had quite a bit of problem finding words for a couple of days - that was scary. He had a tough time having patience with "finding" things - I couldn't get it all unpacked as quickly as he would have liked, but it is what it is. The word finding has improved, and he has settled back into a routine - things he uses regularly now have a place where he knows where to find them, but there are still things I haven't come across yet - things he NEVER uses - but he doesn't know where they are. We'll get there. I have to say I was pretty anxious for a couple of weeks watching this happen, and wondering if I'd made a terrible decision to move. But one floor has been great. I'm getting quotes now to move the washer and dryer up to the main floor. I hadn't realized how much strength he's lost in his legs until we were carrying things to the car to take things back and forth. He couldn't take a step up or down if he had anything in his hands. He needed to be able to hang on to something. Our first couple of days in the house, he went to grab the towel bar in the bathroom to help pull himself up off the commode and tore it right out the wall. He quickly figured out that was not a good idea! Top on my list when we see our family physician is to ask if there's a way to tell if this is from the disease, or is this something that physical therapy might help? He shuffles, barely picking his feet up off the ground.
No neurologist yet, but not sure we need one until I notice BIG changes. I notice little ones, at least I think I do. I think that is why I haven't written for awhile - not a lot of change. Not that I want things to get worse for him - he is perfectly content and mostly compliant - but it is so so difficult to maintain my focus on learning everything I can and watching for changes when any decline he may have had over the last couple of years has been so slight. I don't know any more what I'm looking for! Part of the reason for this particular quote in the title is that none of us in the elite FTD club know exactly where we are going, and the roads and journeys we all take have similarities, but are so different. It's a little strange to write this, but sometimes I feel guilty that my husband is doing so much better than so many other folks with this disease - I feel I haven't paid my dues! Even though this has been going on now for at least fifteen years - people I've met with diagnoses in the last year have progressed SO fast and surpassed any problems my husband has. It is weird.
Anyway, I think I'm back to feeling like I want to write more regularly - even if it's just to note that things are pretty much the same. I did do a webinar with AFTD regarding four pretty distinct patterns of atrophy in the behavior variant FTD, and the groupings of symptoms with those patterns. I'll post the link next time.
It's already June. CRAZY! Wedding is only about six weeks away. FUN!
I was very concerned with some behaviors I observed during the whole process of moving and settling in since I was spending quite a bit of time with Dave - more than usual on a daily basis. He didn't seem to get that we had to take everything out of the house - we couldn't leave stuff we didn't want to use anymore! He had quite a bit of problem finding words for a couple of days - that was scary. He had a tough time having patience with "finding" things - I couldn't get it all unpacked as quickly as he would have liked, but it is what it is. The word finding has improved, and he has settled back into a routine - things he uses regularly now have a place where he knows where to find them, but there are still things I haven't come across yet - things he NEVER uses - but he doesn't know where they are. We'll get there. I have to say I was pretty anxious for a couple of weeks watching this happen, and wondering if I'd made a terrible decision to move. But one floor has been great. I'm getting quotes now to move the washer and dryer up to the main floor. I hadn't realized how much strength he's lost in his legs until we were carrying things to the car to take things back and forth. He couldn't take a step up or down if he had anything in his hands. He needed to be able to hang on to something. Our first couple of days in the house, he went to grab the towel bar in the bathroom to help pull himself up off the commode and tore it right out the wall. He quickly figured out that was not a good idea! Top on my list when we see our family physician is to ask if there's a way to tell if this is from the disease, or is this something that physical therapy might help? He shuffles, barely picking his feet up off the ground.
No neurologist yet, but not sure we need one until I notice BIG changes. I notice little ones, at least I think I do. I think that is why I haven't written for awhile - not a lot of change. Not that I want things to get worse for him - he is perfectly content and mostly compliant - but it is so so difficult to maintain my focus on learning everything I can and watching for changes when any decline he may have had over the last couple of years has been so slight. I don't know any more what I'm looking for! Part of the reason for this particular quote in the title is that none of us in the elite FTD club know exactly where we are going, and the roads and journeys we all take have similarities, but are so different. It's a little strange to write this, but sometimes I feel guilty that my husband is doing so much better than so many other folks with this disease - I feel I haven't paid my dues! Even though this has been going on now for at least fifteen years - people I've met with diagnoses in the last year have progressed SO fast and surpassed any problems my husband has. It is weird.
Anyway, I think I'm back to feeling like I want to write more regularly - even if it's just to note that things are pretty much the same. I did do a webinar with AFTD regarding four pretty distinct patterns of atrophy in the behavior variant FTD, and the groupings of symptoms with those patterns. I'll post the link next time.
It's already June. CRAZY! Wedding is only about six weeks away. FUN!
Sunday, January 1, 2017
Chapter 40 "We're all mad here."
HaPpY nEw YeAr!!!
Can't believe it's 2017. It's been awhile since I've written. I've struggled with a few things. After gathering all the medical records and having them sent to the Penn FTD Center so he could be part of a research study there and have a full assessment and research MRI, it turns out the fact that he fell and developed a subdural hematoma, he doesn't qualify. Even though he had the diagnosis before! I don't get it. His fall and surgeries certainly didn't move anything along. He continues to be on a bit of a plateau and is atypical. I'm quite disappointed - I was really excited about having a full assessment done by someone who only deals with FTD, which meant I might get some confirmation or explanation about all Dave's weird symptoms and whether they are related. No help there. I haven't been able to find a new neurologist with any expertise in dementia around here, at least that I can get into in the next six months to a year! Frustrating. I'm thinking that maybe some medication would help with some of Dave's OCD behaviors. They are beginning to make me a little crazy - driving me a little mad! (Not angry - you know what I mean!)
Also, internet robots have found my blog and are racking up fake page views. I don't know why that bothers me. I guess before that, I felt good that some folks were actually reading my blog and finding it helpful, or making them feel less alone. I would get 10 or 12 page views a day. Now it's hundreds - most of them fake - from weird web sites. But it really doesn't matter. I'm writing this for me to be able to put it all out there and have a record of this journey.
I discovered a facebook page called FTD Spouses. It has been a nice support system. It's a closed group, and everyone has a spouse with FTD. I can throw a question out there and find out if others are seeing the same thing in their spouses. It has also confirmed this is a disease that varies from person to person - such vast difference, but a lot of similarities also. And it's a place to feel some fellowship, especially during the holidays.
Dave is pretty much the same, at least from my perspective. He's had a few weird episodes - about a week ago, it was 11:30 at night and he got up to use the restroom. I made sure he knew it was the middle of the night and he should come back to bed. I fell asleep, and about 20 minutes later realized he hadn't come back to bed. I went downstairs and asked him if he realized how late it was - almost midnight - he said he knew what time it was, but since he was up, he was fixing himself a boiled egg - because that's what he does on Wednesday mornings, and it was almost Wednesday morning, of course! He'd let the dog out and fed her, like he usually does at 6 in the morning! I suggested he turn off the boiling water and come back to bed, but he said he was fine and he'd just stay up - !!! At about 3:30 in the morning, he came back to bed - said he'd gotten bored - nothing was really on TV - which means Family Feud or the game show network! He'd played his computer game for an hour or so, his handheld game for another hour, and had the TV on. I don't get it. He still got up at 6 in the morning, let the dog out and fed her, and had cereal since he'd already had his boiled egg. :)
He had a weird day where he was sure he didn't put his belt on right - I checked it for him - he took it off, put it back on - it was on just how it should be - but he said it wasn't - he couldn't "feel" it on the one side. He went up and looked in the mirror - couldn't figure it out. Then realized he didn't have stuff in his pocket that he normally does - once he put things in his pocket, the world was well. A good example of how people with this disease can't quite connect the dots on things - kind of like swiss cheese - some holes in there that make it hard to figure things out.
He has some awful behaviors where he'll take a napkin or Kleenex out of the garbage to blow his nose - he doesn't want to use a new one. He doesn't wash his hands after doing this, or after pushing down the garbage. He takes things out of the wastebasket in our bathroom each day and puts them on our bed while he makes our bed. GROSS! But no matter how much of a fuss I make when I see it - which I've seen more since I've taken a couple days off with the holidays - he just can't change what he's doing. Goes to the bathroom at the same time each day whether he needs to or not, eats his snacks of crackers with peanut butter and jelly at the same time every day, greets me with a grocery list each day when I get home from work that usually has cookies and black licorice on it. And apparently as soon as I leave the house during the day to run an errand, Dave fixes himself another snack! This has been reported by my son! It is what it is.
We have everything set up with an attorney now, and have put the house in just my name, changed beneficiaries to "my probate estate" - this is in case I die before Dave - everything will be able to bypass him and go to my kids, and they'll take care of him. I have power of attorney, healthcare power of attorney, and a few other things. We got a will set up. I feel better. We are also looking at selling our house we've lived in for 24 years and moving to a small ranch with a very small mortgage. I realized that if we stay here, I won't be able to afford the mortgage payment if Dave does need to go into a nursing home because his retirement and social security would go straight to the nursing home. So this will give me some financial relief for now, as we seem to be living paycheck to paycheck no matter how much I cut out of our budget. I also will feel more comfortable about a one level house - we live in a split with four levels, and I worry about his falling. He moves slower and slower every day. Walks with a shuffle. We went to look at a house that came on the market and is close to our neighborhood, but in an area with far lower taxes - my best friend met me there - she hadn't seen Dave in awhile, and really felt there was a big change. Maybe because I see it every day, I can't gauge the changes. But he is still a very quiet guy - doesn't raise a fuss about anything - just goes along. Some folks with FTD can get quite nasty and defiant. Dave pretty much is compliant and quiet, not engaged much in the world. People still tell me "he's doing great!!!" when they see him because he talks loudly in Spanish to them, says the same thing he always does, laughs - but after that, the lights go out in his eyes - they don't seem to notice that. It's very hard for him to stay engaged or have interest in much. But we are making it work.
So, busy, busy, busy! But I've found I do better when there's a lot to do - I don't dwell on our situation living with FTD. There's too much else to think about! I'm looking forward to sort of having a fresh start in a smaller more manageable place, since I kind of have to do it all, or pay someone to do it. Plus, my daughter got engaged over the holidays! So I'll be busy helping plan a wedding for July. Haven't quite figured out how I'll pay for it! So the timing of selling the house is probably good!
I can only hope that 2017 brings us blessings of peace and contentment with our lives as they are, one day at a time.
Can't believe it's 2017. It's been awhile since I've written. I've struggled with a few things. After gathering all the medical records and having them sent to the Penn FTD Center so he could be part of a research study there and have a full assessment and research MRI, it turns out the fact that he fell and developed a subdural hematoma, he doesn't qualify. Even though he had the diagnosis before! I don't get it. His fall and surgeries certainly didn't move anything along. He continues to be on a bit of a plateau and is atypical. I'm quite disappointed - I was really excited about having a full assessment done by someone who only deals with FTD, which meant I might get some confirmation or explanation about all Dave's weird symptoms and whether they are related. No help there. I haven't been able to find a new neurologist with any expertise in dementia around here, at least that I can get into in the next six months to a year! Frustrating. I'm thinking that maybe some medication would help with some of Dave's OCD behaviors. They are beginning to make me a little crazy - driving me a little mad! (Not angry - you know what I mean!)
Also, internet robots have found my blog and are racking up fake page views. I don't know why that bothers me. I guess before that, I felt good that some folks were actually reading my blog and finding it helpful, or making them feel less alone. I would get 10 or 12 page views a day. Now it's hundreds - most of them fake - from weird web sites. But it really doesn't matter. I'm writing this for me to be able to put it all out there and have a record of this journey.
I discovered a facebook page called FTD Spouses. It has been a nice support system. It's a closed group, and everyone has a spouse with FTD. I can throw a question out there and find out if others are seeing the same thing in their spouses. It has also confirmed this is a disease that varies from person to person - such vast difference, but a lot of similarities also. And it's a place to feel some fellowship, especially during the holidays.
Dave is pretty much the same, at least from my perspective. He's had a few weird episodes - about a week ago, it was 11:30 at night and he got up to use the restroom. I made sure he knew it was the middle of the night and he should come back to bed. I fell asleep, and about 20 minutes later realized he hadn't come back to bed. I went downstairs and asked him if he realized how late it was - almost midnight - he said he knew what time it was, but since he was up, he was fixing himself a boiled egg - because that's what he does on Wednesday mornings, and it was almost Wednesday morning, of course! He'd let the dog out and fed her, like he usually does at 6 in the morning! I suggested he turn off the boiling water and come back to bed, but he said he was fine and he'd just stay up - !!! At about 3:30 in the morning, he came back to bed - said he'd gotten bored - nothing was really on TV - which means Family Feud or the game show network! He'd played his computer game for an hour or so, his handheld game for another hour, and had the TV on. I don't get it. He still got up at 6 in the morning, let the dog out and fed her, and had cereal since he'd already had his boiled egg. :)
He had a weird day where he was sure he didn't put his belt on right - I checked it for him - he took it off, put it back on - it was on just how it should be - but he said it wasn't - he couldn't "feel" it on the one side. He went up and looked in the mirror - couldn't figure it out. Then realized he didn't have stuff in his pocket that he normally does - once he put things in his pocket, the world was well. A good example of how people with this disease can't quite connect the dots on things - kind of like swiss cheese - some holes in there that make it hard to figure things out.
He has some awful behaviors where he'll take a napkin or Kleenex out of the garbage to blow his nose - he doesn't want to use a new one. He doesn't wash his hands after doing this, or after pushing down the garbage. He takes things out of the wastebasket in our bathroom each day and puts them on our bed while he makes our bed. GROSS! But no matter how much of a fuss I make when I see it - which I've seen more since I've taken a couple days off with the holidays - he just can't change what he's doing. Goes to the bathroom at the same time each day whether he needs to or not, eats his snacks of crackers with peanut butter and jelly at the same time every day, greets me with a grocery list each day when I get home from work that usually has cookies and black licorice on it. And apparently as soon as I leave the house during the day to run an errand, Dave fixes himself another snack! This has been reported by my son! It is what it is.
We have everything set up with an attorney now, and have put the house in just my name, changed beneficiaries to "my probate estate" - this is in case I die before Dave - everything will be able to bypass him and go to my kids, and they'll take care of him. I have power of attorney, healthcare power of attorney, and a few other things. We got a will set up. I feel better. We are also looking at selling our house we've lived in for 24 years and moving to a small ranch with a very small mortgage. I realized that if we stay here, I won't be able to afford the mortgage payment if Dave does need to go into a nursing home because his retirement and social security would go straight to the nursing home. So this will give me some financial relief for now, as we seem to be living paycheck to paycheck no matter how much I cut out of our budget. I also will feel more comfortable about a one level house - we live in a split with four levels, and I worry about his falling. He moves slower and slower every day. Walks with a shuffle. We went to look at a house that came on the market and is close to our neighborhood, but in an area with far lower taxes - my best friend met me there - she hadn't seen Dave in awhile, and really felt there was a big change. Maybe because I see it every day, I can't gauge the changes. But he is still a very quiet guy - doesn't raise a fuss about anything - just goes along. Some folks with FTD can get quite nasty and defiant. Dave pretty much is compliant and quiet, not engaged much in the world. People still tell me "he's doing great!!!" when they see him because he talks loudly in Spanish to them, says the same thing he always does, laughs - but after that, the lights go out in his eyes - they don't seem to notice that. It's very hard for him to stay engaged or have interest in much. But we are making it work.
So, busy, busy, busy! But I've found I do better when there's a lot to do - I don't dwell on our situation living with FTD. There's too much else to think about! I'm looking forward to sort of having a fresh start in a smaller more manageable place, since I kind of have to do it all, or pay someone to do it. Plus, my daughter got engaged over the holidays! So I'll be busy helping plan a wedding for July. Haven't quite figured out how I'll pay for it! So the timing of selling the house is probably good!
I can only hope that 2017 brings us blessings of peace and contentment with our lives as they are, one day at a time.
Friday, August 26, 2016
Chapter 39 Two years and holding - 10 things I hate about FTD
It's been two years since diagnosis - probably at least 14 years since onset. Since then, things have changed, but things have not changed. What I have come up with is a list - a list of ten things I hate about FTD. Kind of silly, perhaps. And when I started it with my kids, it was mostly humorous. It led to more serious discussion. So here we go.
1. I hate that I have no time by myself in our home - never ever.
2. I hate that I have to drive everywhere - to run and pick up an onion in the middle of making dinner; or to take Dave to exercise and then pick him up, and if I need a ride to the airport, or when I get the oil changed, I have to call someone else.
3. I hate that I have to make all the decisions about everything - we always did that together - or maybe not always, but for the first 25 years of our marriage.
4. I hate that I have to educate every doctor we come in contact with about FTD.
5. I hate that there is no time line of progression, no way to know what happens next and when.
6. I hate that instead of looking forward to the future, I'm dreading what this disease will bring.
7. I hate that it has robbed us of ten years of income when we could save for retirement.
8. I hate that it has taken my husband, bit by bit, over these years til he is not the man I knew, not the man his kids knew. It's taken his inclination to be loving, affectionate, fun, and interested in me and his kids.
9. I hate that I have no witness to my life - no partner - no one to share this life with, the good and the bad; no one to talk about the early days because he doesn't remember them.
10. I hate not feeling like a wife anymore - just a caregiver; that it sometimes challenges everything I believed about myself and my capacity for tolerance, patience, and compassion.
The honeymoon is over. I have accepted that I have to let it go - I can't fix it, I can't make it better. Dave is not the same man I married. And I've taken some steps finally to take care of me. I have twice been to a support group that is about an hour away from here. I met with a woman whose husband was diagnosed in February one afternoon - and that was great - and we plan to meet again. I've finally talked with an attorney to understand our options and get things squared away. I've refinanced our house to lower our payment a couple hundred a month to give us more breathing room. And I just bought a ticket with credit card points to Florida for a little vacation with two friends - we're all turning 60 this year! - AND I'll get to visit my grandson.
Life is good. Let's face it - it could be much worse - and for now, we've been mostly stable for awhile - no driving, more memories lost, more loss of comprehension - but not too bad. He would say he's happy. And that is important. Doesn't mean that there are no bad days - there were quite a few over the past few months - lots of pity parties. But that doesn't help. The glass is half full.
It is what it is.
1. I hate that I have no time by myself in our home - never ever.
2. I hate that I have to drive everywhere - to run and pick up an onion in the middle of making dinner; or to take Dave to exercise and then pick him up, and if I need a ride to the airport, or when I get the oil changed, I have to call someone else.
3. I hate that I have to make all the decisions about everything - we always did that together - or maybe not always, but for the first 25 years of our marriage.
4. I hate that I have to educate every doctor we come in contact with about FTD.
5. I hate that there is no time line of progression, no way to know what happens next and when.
6. I hate that instead of looking forward to the future, I'm dreading what this disease will bring.
7. I hate that it has robbed us of ten years of income when we could save for retirement.
8. I hate that it has taken my husband, bit by bit, over these years til he is not the man I knew, not the man his kids knew. It's taken his inclination to be loving, affectionate, fun, and interested in me and his kids.
9. I hate that I have no witness to my life - no partner - no one to share this life with, the good and the bad; no one to talk about the early days because he doesn't remember them.
10. I hate not feeling like a wife anymore - just a caregiver; that it sometimes challenges everything I believed about myself and my capacity for tolerance, patience, and compassion.
The honeymoon is over. I have accepted that I have to let it go - I can't fix it, I can't make it better. Dave is not the same man I married. And I've taken some steps finally to take care of me. I have twice been to a support group that is about an hour away from here. I met with a woman whose husband was diagnosed in February one afternoon - and that was great - and we plan to meet again. I've finally talked with an attorney to understand our options and get things squared away. I've refinanced our house to lower our payment a couple hundred a month to give us more breathing room. And I just bought a ticket with credit card points to Florida for a little vacation with two friends - we're all turning 60 this year! - AND I'll get to visit my grandson.
Life is good. Let's face it - it could be much worse - and for now, we've been mostly stable for awhile - no driving, more memories lost, more loss of comprehension - but not too bad. He would say he's happy. And that is important. Doesn't mean that there are no bad days - there were quite a few over the past few months - lots of pity parties. But that doesn't help. The glass is half full.
It is what it is.
Friday, July 15, 2016
A really great blog you may want to check out
There's a blog I came across - Houldingon.blogspot.com - written by a woman whose husband has FTD. She just started her blog in June - there are five posts - and they are SO well done. Her name is Dawn - she has a wonderful and thoughtful way with words, and she seems to be able to find just the right way to say many of the things I try to express about this disease. If you happened upon my blog looking for someone on the same journey you're on, check out Houldingon.blogspot.com. It is excellent. I haven't read any quite like hers. Her latest entry, The Changeling, talks about the change in the person with FTD. Check it out!
Friday, July 1, 2016
Chapter 38 "It would be so nice if something made sense for a change."
We had a nice father's day. Two of my kids that live in town were talking about a barbeque - ribs, corn on the cob, watermelon. Dave wanted Kentucky Fried Chicken. He talked about it for several days when the kids asked what he would like. He was not interested in a barbeque. So they picked up some Kentucky Fried chicken - exactly what he wanted. I made a cake. We skyped with our son in Florida. It was the new normal, that's for sure.
Several weeks ago Dave fell - tripped over something in our room. He hit his head on our dresser and his knee was pretty banged up. I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye. I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it. Yet he was fairly certain it had happened in the morning, but he just wasn't sure. When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room.
After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness. He did get a knee stabilizer that seemed to help with the pain in his leg a little big. I wheeled him out to the car and we headed back home.
He would not put up with the knee stabilizer even for 24 hours. His knee still bothers him, but has gotten a little better each day. He hasn't been back to exercise at the senior center. He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it. I should have known....but I give up on trying to restrict what he does. It's no use. I can't be home all the time - I don't have the option of staying home. His cheek bone and black eye looked far worse before it started healing. He still has a bruise on his face. It's visible in the video.
Now? His other leg is swollen and hurting him. The calf is swollen and tender. My concern is a blood clot. It's not red or hot - but it is very tender. If it's still a problem tomorrow, we'll head to the doctor's.
When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities. How do I describe what he is unable to do? It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers. It was very frustrating and reaffirmed to me how heinous this disease is. People think he seems just fine - physically he does ok. He has a form of dementia. But it's different - the deficits aren't what I usually associate with dementia. We'll see. I need to work on how to concisely describe the deficits and changes in an unemotional way. Just can't get there right now. It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone. The one person I share so many memories with - and he doesn't remember them. Still working on creating new ones. Fun ones to overshadow the hard ones.
A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him. Dave went to seminary with him, and they were best buds. We used to often go up to visit him and his family over the holidays. But about ten years ago, it stopped. Dave called and left a message for John, asking him to call. Well, on Father's Day in the evening, John called! And to watch Dave talking with him - it brought tears to my eyes! I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun! I'm hoping they might speak more often now. I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person. Dave certainly remembers John and their times at the seminary. It's funny the "frames" of his life he seems to remember well. It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again. Or it breaks and has to be spliced back together - but a part is gone. I need to keep finding the parts that are still in tact and whole and hold on to those.
We're coming up on two years since we visited the neurologist for the first time in July, 2014. In August we got the diagnosis. I think he's been in a pretty decent holding pattern. I understand this can be the case with this disease. A holding pattern for a couple of years, and then a steep decline? We'll see. It's almost the end of June - 4th of July next weekend. Looking forward to a long weekend. Happy 4th of July!
Several weeks ago Dave fell - tripped over something in our room. He hit his head on our dresser and his knee was pretty banged up. I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye. I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it. Yet he was fairly certain it had happened in the morning, but he just wasn't sure. When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room.
After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness. He did get a knee stabilizer that seemed to help with the pain in his leg a little big. I wheeled him out to the car and we headed back home.
He would not put up with the knee stabilizer even for 24 hours. His knee still bothers him, but has gotten a little better each day. He hasn't been back to exercise at the senior center. He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it. I should have known....but I give up on trying to restrict what he does. It's no use. I can't be home all the time - I don't have the option of staying home. His cheek bone and black eye looked far worse before it started healing. He still has a bruise on his face. It's visible in the video.
Now? His other leg is swollen and hurting him. The calf is swollen and tender. My concern is a blood clot. It's not red or hot - but it is very tender. If it's still a problem tomorrow, we'll head to the doctor's.
When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities. How do I describe what he is unable to do? It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers. It was very frustrating and reaffirmed to me how heinous this disease is. People think he seems just fine - physically he does ok. He has a form of dementia. But it's different - the deficits aren't what I usually associate with dementia. We'll see. I need to work on how to concisely describe the deficits and changes in an unemotional way. Just can't get there right now. It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone. The one person I share so many memories with - and he doesn't remember them. Still working on creating new ones. Fun ones to overshadow the hard ones.
A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him. Dave went to seminary with him, and they were best buds. We used to often go up to visit him and his family over the holidays. But about ten years ago, it stopped. Dave called and left a message for John, asking him to call. Well, on Father's Day in the evening, John called! And to watch Dave talking with him - it brought tears to my eyes! I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun! I'm hoping they might speak more often now. I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person. Dave certainly remembers John and their times at the seminary. It's funny the "frames" of his life he seems to remember well. It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again. Or it breaks and has to be spliced back together - but a part is gone. I need to keep finding the parts that are still in tact and whole and hold on to those.
We're coming up on two years since we visited the neurologist for the first time in July, 2014. In August we got the diagnosis. I think he's been in a pretty decent holding pattern. I understand this can be the case with this disease. A holding pattern for a couple of years, and then a steep decline? We'll see. It's almost the end of June - 4th of July next weekend. Looking forward to a long weekend. Happy 4th of July!
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