If you're looking for something uplifting in reading this post, stop now! Don't continue! Close out now! I'm in a mood this week. Just warning you!
So, I'm feeling very much like I'm stuck in the movie Ground Hog Day, except it's called Dave's World! I'm stuck in Dave's world. I was reading through some posts on the Facebook page FTD Spouse when I saw in black and white the analogy for how I've been feeling. The sameness of every day is chipping away at my soul. I know many people are dealing with much more difficult situations with their spouses and families than I am. Most days that keeps me going, knowing that I am blessed. But there are days where I'm stuck in my reality it's been difficult to talk myself into recognizing all the blessings. It's part of the cycle, and I know it will pass. For now, I'm grieving the loss of what should be, of what I thought life would be right now in my life. I'm grieving the loss of some one to share my life with, to dream with, to work together with. The other day Dave mentioned he doesn't remember our wedding day. Not such a big deal, but a little sting, a little chipping away at my soul. Absolutely hate this disease.
I feel guilt at the lack of quality I see in Dave's daily life and feel I should be working to improve it. He lives the same life every day with very little variation. He's alone from about 7 in the morning until about 3 in the afternoon. I've asked him about finding maybe a friendly visitor, or someone to take him to lunch a couple times a week. His response: why? I've invited him to go for a walk along the river on these beautiful evenings we've been having - why? He is very content with his daily routine that I judge to be so boring, so lifeless. But I guess I'm beginning to ask myself, who am I to judge? If he's happy - well, not necessarily happy, but content - with the way his life is, why do I keep trying to change it? I've realized it's because I can't stand it. Selfishly, I CAN'T STAND IT! I can't stand the sameness of every day. The same conversations each day about the dog doing her business, what came in the mail, and what he needs from the grocery store. The only conversations he initiates are about things he is ruminating about, like did I lock my car? Did I lock the doors? Am I going to the grocery store? He did ask me the other day what a catheter is ...? Turns out there was a commercial for them on the game show network, and he wasn't sure what they were for.
I find myself tearing up any time I have a few moments alone, whether it's in the car, or at work, or on the back porch. I don't think I can do this for another 15 years. This has been going on so long that the good things about our marriage seem to be fading into the background. A friend asked me if the Dave of fifteen years ago would want me to be trying to figure this all out, trying to make it all work, being tied to what seems like a shrinking narrow existence. Honestly? I can't say. He was a person who demonstrated his love for those around him through acts of service. He studied for the priesthood. He was a social worker, working with the severely mentally ill, then with children's services for 18 years. So his life was one of service, in his work and in his family life. I can't help but think if the situation was reversed that he would be content to be taking care of me til death do us part. That's the kind of person he was. He would never complain. He doesn't complain now. The closest he gets to complaining is when he asks someone in Spanish how they are doing and they respond "muy bien". He responds that he's never muy bien - just bien or asi asi (so so). But he laughs about it.
So it's time for me to snap out of it - it is what it is. And if fifteen more years is what I have left with him, I need to remember all the blessings in my life. I need to stop feeling guilty if I meet friends for a happy hour. I need to be ok with doing my own thing. I need to suck it up and keep going. And I'm probably going to need some help - it's time to check in with my doctor and make sure I'm taking the best care of myself that I can. And I need to find ways to feed my soul. But this all is too much some days. Too much to see my way around it and through it. I wish I had a better heart, a lot more patience and willingness to throw myself into the role of caregiver, and accept the challenge to be the best caregiver ever! I'll get there.
But not today.
Thursday, August 24, 2017
Saturday, August 5, 2017
Chapter 43 "You're entirely bonkers. But I'll tell you a secret. All the best people are."
So.....a new development. Or maybe not so new. My son told me a similar thing a couple of months ago, but when I talked to Dave, he seemed to understand that shows on TV are not real life. But yesterday, in the afternoon, my husband was watching the SyFy channel - some crazy movie with a giant crocodile or alligator attacking people. He said something about all the people getting eaten. I said, you know that's fake, right? He said, no, it's real - I saw that thing bite two people's heads off. So many people have been killed........
I was a little taken aback! So I explained it was just a story - made up - and that the people were just actors, that it was special effects. He asked how did they make it look so real? Again, I said special effects, and I explained that no actor would ever take a job if they were going to get killed in the part they were playing. I didn't feel like he really believed me! So I was trying to wrap my brain around all this. A little while later, I asked him about Star Wars - it was one of the first movies we saw years ago - I asked him if he thought that was real. He said, that's not real either? Then I said - what about the Harry Potter movies? Hogwarts? Wizardry? Battles with wands! He again said, that's not real either? My response was - it would be really cool if it was real! But no, it's not. He just kept wondering how they make it look so real!
So, my head was spinning. But you know what? For the first time, I was seeing a concrete symptom of his FTD. Everything else - the OCD, the lack of interest in others, the cognitive problems - they have been happening for so long, so gradually, that in the back of my mind, I've wondered if these were just who he was once our kids were grown and gone. I've known there was something wrong, but it was all elusive. And annoying. I admit, it sounds cold and unfeeling, but there are days I'm so tired of making decisions on my own, of having to do everything, give him rides every where, explain so many things to him, fix things he's messed up, get things out of the garbage he's thrown away that shouldn't have been thrown away, worried about all he eats, and on and on. All the things that sometimes people have said "My husband does that, too. Maybe you're making too much of it." But this - there's no denying it - this is new, definitely not normal, and if someone tells me their husband does that also? I'd be giving them some phone numbers and telling them their husband needs help! This is something I know is not subjective - this is "bonkers" - no matter how you look at it. But because I know it's a definitive symptom - and indicates a problem with figuring out what's real or not real - it actually helps me be more compassionate. I know now that things are progressing - it may be small - but it's the first thing that's scary. I start thinking about anyone who might knock on our door when I'm at work; anyone who might call. It brings a new perspective to me about how he looks at the world, how he processes what he hears and sees. We talked a little more today - I was giving him some concrete suggestions on how to tell if what he's seeing on TV is "real" or a story. We talked about different shows - he asked if Wheel of Fortune is real - yes, I said. It's a game show. Most game shows are real. I asked him about Big Bang Theory - he watches a lot of reruns of that - he said, that's real, right? No, I said. Those are actors that have a scripted story they are following, kind of like when our kids did plays in community theater. I asked him about Two and a Half Men (I personally HATE that show) - he thought that might be real also - again, I said no. Tried to tell him what was "real". We watched Dances with Wolves today. I pointed out if you look at the "info" on the TV about the show you're watching, and it lists actors - it's just a story - not happening in real life - no one is dying, or getting eaten, or cursed. I asked him why it didn't worry him if he thought those SyFy movies were real - like five headed sharks, and giant snakes - he said because we don't live near those places, he wasn't worried. I asked about all the vampire movies that are on that channel - he said, well, he doesn't believe in vampires, so he knew those weren't real......go figure. I don't know if he'll retain our discussions - or remember what's real or not real. We'll see. That's an easy one to check periodically. When I asked on the FTD Spouse page on Facebook if others had experienced this, the answer was a resounding yes - some folks' spouses talk to the person in the mirror or won't get undressed with the TV on because the loved one thinks the people on the TV can see them, another thinks two characters on NCIS live down the street from them and are their friends. So Dave is in good company! It is all a wild wild trip! Only in FTD land!
For the first time on this journey, I'm a little concerned about him being home alone when my son goes back to his job in the schools in the fall. I'll just have to be more vigilant, make sure he's got my cell and work number in his wallet, review what to do if he falls or hurts himself...Crazy crazy crazy. Looking foward to our appointment in October with our new neurologist. Starting to make a list of his behaviors, and this will be the strangest and most telling of them all, I have a feeling.
More later. The story continues!
I was a little taken aback! So I explained it was just a story - made up - and that the people were just actors, that it was special effects. He asked how did they make it look so real? Again, I said special effects, and I explained that no actor would ever take a job if they were going to get killed in the part they were playing. I didn't feel like he really believed me! So I was trying to wrap my brain around all this. A little while later, I asked him about Star Wars - it was one of the first movies we saw years ago - I asked him if he thought that was real. He said, that's not real either? Then I said - what about the Harry Potter movies? Hogwarts? Wizardry? Battles with wands! He again said, that's not real either? My response was - it would be really cool if it was real! But no, it's not. He just kept wondering how they make it look so real!
So, my head was spinning. But you know what? For the first time, I was seeing a concrete symptom of his FTD. Everything else - the OCD, the lack of interest in others, the cognitive problems - they have been happening for so long, so gradually, that in the back of my mind, I've wondered if these were just who he was once our kids were grown and gone. I've known there was something wrong, but it was all elusive. And annoying. I admit, it sounds cold and unfeeling, but there are days I'm so tired of making decisions on my own, of having to do everything, give him rides every where, explain so many things to him, fix things he's messed up, get things out of the garbage he's thrown away that shouldn't have been thrown away, worried about all he eats, and on and on. All the things that sometimes people have said "My husband does that, too. Maybe you're making too much of it." But this - there's no denying it - this is new, definitely not normal, and if someone tells me their husband does that also? I'd be giving them some phone numbers and telling them their husband needs help! This is something I know is not subjective - this is "bonkers" - no matter how you look at it. But because I know it's a definitive symptom - and indicates a problem with figuring out what's real or not real - it actually helps me be more compassionate. I know now that things are progressing - it may be small - but it's the first thing that's scary. I start thinking about anyone who might knock on our door when I'm at work; anyone who might call. It brings a new perspective to me about how he looks at the world, how he processes what he hears and sees. We talked a little more today - I was giving him some concrete suggestions on how to tell if what he's seeing on TV is "real" or a story. We talked about different shows - he asked if Wheel of Fortune is real - yes, I said. It's a game show. Most game shows are real. I asked him about Big Bang Theory - he watches a lot of reruns of that - he said, that's real, right? No, I said. Those are actors that have a scripted story they are following, kind of like when our kids did plays in community theater. I asked him about Two and a Half Men (I personally HATE that show) - he thought that might be real also - again, I said no. Tried to tell him what was "real". We watched Dances with Wolves today. I pointed out if you look at the "info" on the TV about the show you're watching, and it lists actors - it's just a story - not happening in real life - no one is dying, or getting eaten, or cursed. I asked him why it didn't worry him if he thought those SyFy movies were real - like five headed sharks, and giant snakes - he said because we don't live near those places, he wasn't worried. I asked about all the vampire movies that are on that channel - he said, well, he doesn't believe in vampires, so he knew those weren't real......go figure. I don't know if he'll retain our discussions - or remember what's real or not real. We'll see. That's an easy one to check periodically. When I asked on the FTD Spouse page on Facebook if others had experienced this, the answer was a resounding yes - some folks' spouses talk to the person in the mirror or won't get undressed with the TV on because the loved one thinks the people on the TV can see them, another thinks two characters on NCIS live down the street from them and are their friends. So Dave is in good company! It is all a wild wild trip! Only in FTD land!
For the first time on this journey, I'm a little concerned about him being home alone when my son goes back to his job in the schools in the fall. I'll just have to be more vigilant, make sure he's got my cell and work number in his wallet, review what to do if he falls or hurts himself...Crazy crazy crazy. Looking foward to our appointment in October with our new neurologist. Starting to make a list of his behaviors, and this will be the strangest and most telling of them all, I have a feeling.
More later. The story continues!
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