It's been a long time since I've written and the opportunity came up to join some friends on a new blog site so I jumped at it. It's always been really cathartic for me to write. The goal is to post every Tuesday to share what we're up to. Maybe I'll get Owen to write some with me, if he dares! I promise it won't be all doom and gloom.
Much love!
Marla
http://rysham.com/site/2015/01/27/life_after_cancer/
Tuesday, January 27, 2015
Tuesday, February 25, 2014
Productivity?
I'm still trying to take care of everything that needs taken care of. Changing names on bills, filing paperwork etc etc boring stuff. To add a little extra fun tax season is coming and I need to finish those up (almost done) and then the Visa I use for everything got canceled because of the Target guffaw around Christmas so I got a new card that I have to make sure I update everywhere I use it.
Today I'm feeling productive, probably why I have the energy to write this. That hasn't always been the case since my last post. Things are finally starting to sink in and that is difficult. We'll power through but it slows us down a bit.
The movie Long Kiss Goodnight (geena davis and samuel l jackson) was on the other day so I watched it which is funny because when it came out in the theater I really wanted to go see it and Dave and Tim went without me. Dave said he'd go see it with me too but I was so mad/stubborn about it I wouldn't watch it. It was a couple of years before I finally watched it. It seems silly now, but at the time I'm sure it was the worst thing he had ever done. It's funny the things we see as important when everything else is pretty hunky dorey compared to when things are tough and you let little things go. ANYWAY. There's a line in the movie that says, "Life is pain. Get used to it." While I don't think that life is always pain I was struck by the phrase. "get used to it." Not get over it. Get used to it. It's part of the whole new normal concept. We'll get used to it but right now it just sucks. There's really no better way to describe it. As an aside Dave never went to a movie I wanted to see without me again. haha
I canceled David's phone today. That was difficult as well but we were paying for it when we didn't need to be. I can still access everything on it via wi-fi but it's just little things like that I like to do all at once so I don't prolong the agony. If I did one thing every day like I was doing before then every day I would have a reminder in my face about it. Not that it's not already in my face but that makes it worse. I wish it was one of those things you can get desensitized to.
So the obituary. I put a longer one in the funeral program and I guess I'll just do a summarized short one in the register guard. They charge you the same as any other classified ad, $25 per inch which is about 20 words per inch, and I could write a novel if they let me so I guess that's how I'll deal with it. I feel less pressure since the funeral has already happened and I'm not on a schedule here.
One of the benefits of Hospice is that they provide bereavement services after the loved one has departed. (that's so gently worded) The social worker/counselor gave me a visit and it happened to be on the worst day so far. Maybe good timing? She gave me a chapter from a book about things that happen when you lose a spouse. It was really aimed more at elderly spouses and it was really not at all encouraging for a younger person. About how women tend to spend the rest of their lives alone vs men who get back out there. I'm sure it's helpful for some people but I didn't find it helpful at all. Where are the books about losing someone when you're young. I googled it out of curiosity "losing a young spouse" then giggled at the link that said "How to live after the death of a spouse: 10 steps (with pictures)" With pictures. hahahaha I'll say that the watercolor images really weren't necessary or beneficial.
Yesterday I decided to clean the fridge, take out shelves and all that. About halfway through I got irritated and just grabbed my ipod and left for a walk. Didn't have to check with anyone first, didn't have to make sure Dave was ok, just left. I only went 1.72 (yay gps) miles but it was kind of liberating. Of course about a mile in I realized I need new shoes. HA! the blister on my pinky toe isn't happy but I'm glad I could get some of that frustration out. I forget about the exercise endorphines. I need to get back to that. Owen has expressed interest in doing something, like bootcamp, with me. I don't know if we're quite to that point of readiness yet but I don't want to discourage him. Maybe I'll borrow from his motivation.
Today I'm feeling productive, probably why I have the energy to write this. That hasn't always been the case since my last post. Things are finally starting to sink in and that is difficult. We'll power through but it slows us down a bit.
The movie Long Kiss Goodnight (geena davis and samuel l jackson) was on the other day so I watched it which is funny because when it came out in the theater I really wanted to go see it and Dave and Tim went without me. Dave said he'd go see it with me too but I was so mad/stubborn about it I wouldn't watch it. It was a couple of years before I finally watched it. It seems silly now, but at the time I'm sure it was the worst thing he had ever done. It's funny the things we see as important when everything else is pretty hunky dorey compared to when things are tough and you let little things go. ANYWAY. There's a line in the movie that says, "Life is pain. Get used to it." While I don't think that life is always pain I was struck by the phrase. "get used to it." Not get over it. Get used to it. It's part of the whole new normal concept. We'll get used to it but right now it just sucks. There's really no better way to describe it. As an aside Dave never went to a movie I wanted to see without me again. haha
I canceled David's phone today. That was difficult as well but we were paying for it when we didn't need to be. I can still access everything on it via wi-fi but it's just little things like that I like to do all at once so I don't prolong the agony. If I did one thing every day like I was doing before then every day I would have a reminder in my face about it. Not that it's not already in my face but that makes it worse. I wish it was one of those things you can get desensitized to.
So the obituary. I put a longer one in the funeral program and I guess I'll just do a summarized short one in the register guard. They charge you the same as any other classified ad, $25 per inch which is about 20 words per inch, and I could write a novel if they let me so I guess that's how I'll deal with it. I feel less pressure since the funeral has already happened and I'm not on a schedule here.
One of the benefits of Hospice is that they provide bereavement services after the loved one has departed. (that's so gently worded) The social worker/counselor gave me a visit and it happened to be on the worst day so far. Maybe good timing? She gave me a chapter from a book about things that happen when you lose a spouse. It was really aimed more at elderly spouses and it was really not at all encouraging for a younger person. About how women tend to spend the rest of their lives alone vs men who get back out there. I'm sure it's helpful for some people but I didn't find it helpful at all. Where are the books about losing someone when you're young. I googled it out of curiosity "losing a young spouse" then giggled at the link that said "How to live after the death of a spouse: 10 steps (with pictures)" With pictures. hahahaha I'll say that the watercolor images really weren't necessary or beneficial.
Yesterday I decided to clean the fridge, take out shelves and all that. About halfway through I got irritated and just grabbed my ipod and left for a walk. Didn't have to check with anyone first, didn't have to make sure Dave was ok, just left. I only went 1.72 (yay gps) miles but it was kind of liberating. Of course about a mile in I realized I need new shoes. HA! the blister on my pinky toe isn't happy but I'm glad I could get some of that frustration out. I forget about the exercise endorphines. I need to get back to that. Owen has expressed interest in doing something, like bootcamp, with me. I don't know if we're quite to that point of readiness yet but I don't want to discourage him. Maybe I'll borrow from his motivation.
Wednesday, February 12, 2014
Two weeks already?
It's been almost exactly two weeks since Dave passed. By almost exactly I mean... 15 minutes ago it was 2 weeks exactly. I have a complete lack of comprehension of time. (and so does Owen since he walked to school this morning then realized that he has a late start and was 2 hours early... oops.)
What have we been doing? The first week was full of funeral planning and making immediate arrangements. Now is the nitty gritty dirty work of notification and social security and death certificate distribution and ... ugh... insurance mucking. I tried to do too much too soon and got completely overwhelmed, or underwhelmed, at the speed at which the rest of the world works. Read: not fast enough. Then at the end of last week we had a nice little snow/ice storm that effectively shut down Oregon and I got roughly zero things done for a few days. Talk about anxiety. I should have lounged around eating bon bons and watching soap operas but instead I tried to make lists so I know what I need to do. That helps actually. I also decided if I can accomplish one or two things per day I'm in good shape and still moving forward. I just had to prioritize. In fact, it's only 9:30 now and I've already gotten TWO THINGS DONE! And I'm on a roll so I might actually do THREE things. I'm out of control with productivity! ;)
I've noticed a couple of human nature type things in my process. When I call to get info about what, if anything, I need to do with a company if a woman answers and I tell her that David passed her voice gets softer and she gets empathetic and apologetic. If a man answers he gets more business-like. I read it as a masculine, "I'm going to make things easier for you by taking care of business" whereas women I read more like, "I'm going to make things easier for you by taking care of business while simultaneously being sympathetic to your loss" They say they're sorry when I tell them and then again at the end of the conversation. My favorite was actually the first guy I talked to from the bank who got very authoritative sounding and never said sorry but got me a lot of information. Thank you anonymous bank guy who didn't know what to say! Saying nothing was perfect in that moment!
The other side of this is my response that I didn't really expect. It's nice to have people be caring and considerate and gentle, for lack of a better word. But it's difficult to hear. I don't feel sorry for myself and don't want other people to either. (ok that's a tiny lie, I have moments of feeling sorry for myself but I try to keep that in check) So my unexpected response is sadness. At the funeral I was fully expecting to hear people say they're sorry for our loss and that's perfectly acceptable. I was in a headspace to hear that and honestly you get a little numb to it after a while and that's a good thing. But hearing it here and there throughout the day while trying to take care of other business catches me off guard in an emotional way. I know you're sorry, so am I. It makes me want to blurt out " David passed away a couple of weeks ago, please don't say sorry just tell me what steps I need to take to get my ducks in a row." But I don't. It doesn't always bother me but when it does it always hits me at inopportune times, like right before I need to go to the grocery store, not as I'm finishing up errands and heading home.
The most difficult part of this has been figuring out the health insurance. I *think* Owen is eligible for the healthy kids, oregon health plan, whatever it's called thing. But I don't think I am. That's fine, we want to stay with pacificsource but the OHP plan for kids is great so if I can get him on that it's good and I can get separate coverage. I need it to start March 1st which is very do-able since I'm actually taking care of it now. However the website claims OHP can take up to 45 days to get on so I need to figure out if I need to add him to my coverage until that opens up or if it doesn't take 45 days but that's a disclaimer. Calling them is fairly useless because you end up on hold forever and then my phone loses signal or something equally annoying. They're open until 8 pm and they claim the call volume is lower at night, so I guess I'll try back later. In the mean time I'm filling out applications like a boss and getting those ducks in a row so I can send it in today.(that would make FOUR things! Look out!) I figure if I get all the irons in the fire right now then they'll be nice and toasty when I need to use them.
I wish there had been a way to plan ahead better for some of this stuff but there really wasn't. We thought we did a bunch of planning, and we did, but I wish there was a way to do MORE planning. Like a clearing house that notifies everyone for you or something. The funeral home gives you a list of places to think about notifying but they give it to you after someone dies. When you make pre-arrangements I think that would be a helpful list to have BEFORE they die so you can get all the phone numbers/account numbers together and just have one master list to work from instead of being foggy and trying to collect that information later. Knowing how many death certificates you need and things of that nature. Not that it's hard info to collect, it would just take a step out of the process. That's going in the book we're writing. If there is anything I can do to help people in similar situations to make the process just a tiny bit easier I feel like it's my duty to do that. Plus I'm bossy and helpful so if I can tell people what to do and have it help them that's kind of perfect. haha
As for how Owen and I are doing, well, we're ok mostly. We've been living with this and mourning this for 2 years. We're tired. We're not sleeping as well as we could be although I think that's slowly getting better. We talk about Dave a lot and miss him a ton but we know what he wanted for us and 2 years is a long time to process, even if we didn't always believe he would be gone. It's different now but it's not like when someone dies suddenly. We've been through the bulk of it and now we're experiencing a different step in the process where we're kind of in the acceptance and resolution stage. That feels like a rollercoaster. It's an awful feeling because society tells us that there's a mourning period and we should feel a certain way and we don't really so clearly we're doing it wrong. But it feels good because we're not starting at the beginning and we can see the light at the end of this very long tunnel. We WANT to see light. Please show us light! We want to move forward and that's huge. We'll never be "over it" but we know we'll get past it and have to continue living our own lives and finding our new normal.
As an aside: Do you know how hard it was to have to stay in the house last weekend because of the snow?! Cruel joke to be sure. The first weekend in 2 years we could go out and do something and we're literally trapped at home. Maybe it was good to have a forced moment to pause and ponder. But now that's over and we went to dinner the other night and today I think we're going to a movie because FROZEN AND THE LEGO MOVIE ARE CALLING OUR NAMES!
Owen's birthday is monday. 15 years old. Oh I should add "get him a book from the DMV to study for his permit test" to my list of things to do. (Five things?! That might be pushing it) We don't know what we want to do but we know we want to spend it together and we want to spend it out of the house. I'm glad he still likes me because I adore the heck out of that kid. He amazes me every day with his insights and observations and understanding. We have our bickery moments but we always come back and apologize and make things right. We're mother and son but we're also friends, I think we have an excellent foundation for getting through this. I hope I can say the same thing when he's about to turn 16 or 17 or 18.. or 40. LOL
I kept the sappier stuff out of this post. I have a lot of that in me but I just can't let most of it out yet. This is your official warning!! ;)
What have we been doing? The first week was full of funeral planning and making immediate arrangements. Now is the nitty gritty dirty work of notification and social security and death certificate distribution and ... ugh... insurance mucking. I tried to do too much too soon and got completely overwhelmed, or underwhelmed, at the speed at which the rest of the world works. Read: not fast enough. Then at the end of last week we had a nice little snow/ice storm that effectively shut down Oregon and I got roughly zero things done for a few days. Talk about anxiety. I should have lounged around eating bon bons and watching soap operas but instead I tried to make lists so I know what I need to do. That helps actually. I also decided if I can accomplish one or two things per day I'm in good shape and still moving forward. I just had to prioritize. In fact, it's only 9:30 now and I've already gotten TWO THINGS DONE! And I'm on a roll so I might actually do THREE things. I'm out of control with productivity! ;)
I've noticed a couple of human nature type things in my process. When I call to get info about what, if anything, I need to do with a company if a woman answers and I tell her that David passed her voice gets softer and she gets empathetic and apologetic. If a man answers he gets more business-like. I read it as a masculine, "I'm going to make things easier for you by taking care of business" whereas women I read more like, "I'm going to make things easier for you by taking care of business while simultaneously being sympathetic to your loss" They say they're sorry when I tell them and then again at the end of the conversation. My favorite was actually the first guy I talked to from the bank who got very authoritative sounding and never said sorry but got me a lot of information. Thank you anonymous bank guy who didn't know what to say! Saying nothing was perfect in that moment!
The other side of this is my response that I didn't really expect. It's nice to have people be caring and considerate and gentle, for lack of a better word. But it's difficult to hear. I don't feel sorry for myself and don't want other people to either. (ok that's a tiny lie, I have moments of feeling sorry for myself but I try to keep that in check) So my unexpected response is sadness. At the funeral I was fully expecting to hear people say they're sorry for our loss and that's perfectly acceptable. I was in a headspace to hear that and honestly you get a little numb to it after a while and that's a good thing. But hearing it here and there throughout the day while trying to take care of other business catches me off guard in an emotional way. I know you're sorry, so am I. It makes me want to blurt out " David passed away a couple of weeks ago, please don't say sorry just tell me what steps I need to take to get my ducks in a row." But I don't. It doesn't always bother me but when it does it always hits me at inopportune times, like right before I need to go to the grocery store, not as I'm finishing up errands and heading home.
The most difficult part of this has been figuring out the health insurance. I *think* Owen is eligible for the healthy kids, oregon health plan, whatever it's called thing. But I don't think I am. That's fine, we want to stay with pacificsource but the OHP plan for kids is great so if I can get him on that it's good and I can get separate coverage. I need it to start March 1st which is very do-able since I'm actually taking care of it now. However the website claims OHP can take up to 45 days to get on so I need to figure out if I need to add him to my coverage until that opens up or if it doesn't take 45 days but that's a disclaimer. Calling them is fairly useless because you end up on hold forever and then my phone loses signal or something equally annoying. They're open until 8 pm and they claim the call volume is lower at night, so I guess I'll try back later. In the mean time I'm filling out applications like a boss and getting those ducks in a row so I can send it in today.(that would make FOUR things! Look out!) I figure if I get all the irons in the fire right now then they'll be nice and toasty when I need to use them.
I wish there had been a way to plan ahead better for some of this stuff but there really wasn't. We thought we did a bunch of planning, and we did, but I wish there was a way to do MORE planning. Like a clearing house that notifies everyone for you or something. The funeral home gives you a list of places to think about notifying but they give it to you after someone dies. When you make pre-arrangements I think that would be a helpful list to have BEFORE they die so you can get all the phone numbers/account numbers together and just have one master list to work from instead of being foggy and trying to collect that information later. Knowing how many death certificates you need and things of that nature. Not that it's hard info to collect, it would just take a step out of the process. That's going in the book we're writing. If there is anything I can do to help people in similar situations to make the process just a tiny bit easier I feel like it's my duty to do that. Plus I'm bossy and helpful so if I can tell people what to do and have it help them that's kind of perfect. haha
As for how Owen and I are doing, well, we're ok mostly. We've been living with this and mourning this for 2 years. We're tired. We're not sleeping as well as we could be although I think that's slowly getting better. We talk about Dave a lot and miss him a ton but we know what he wanted for us and 2 years is a long time to process, even if we didn't always believe he would be gone. It's different now but it's not like when someone dies suddenly. We've been through the bulk of it and now we're experiencing a different step in the process where we're kind of in the acceptance and resolution stage. That feels like a rollercoaster. It's an awful feeling because society tells us that there's a mourning period and we should feel a certain way and we don't really so clearly we're doing it wrong. But it feels good because we're not starting at the beginning and we can see the light at the end of this very long tunnel. We WANT to see light. Please show us light! We want to move forward and that's huge. We'll never be "over it" but we know we'll get past it and have to continue living our own lives and finding our new normal.
As an aside: Do you know how hard it was to have to stay in the house last weekend because of the snow?! Cruel joke to be sure. The first weekend in 2 years we could go out and do something and we're literally trapped at home. Maybe it was good to have a forced moment to pause and ponder. But now that's over and we went to dinner the other night and today I think we're going to a movie because FROZEN AND THE LEGO MOVIE ARE CALLING OUR NAMES!
Owen's birthday is monday. 15 years old. Oh I should add "get him a book from the DMV to study for his permit test" to my list of things to do. (Five things?! That might be pushing it) We don't know what we want to do but we know we want to spend it together and we want to spend it out of the house. I'm glad he still likes me because I adore the heck out of that kid. He amazes me every day with his insights and observations and understanding. We have our bickery moments but we always come back and apologize and make things right. We're mother and son but we're also friends, I think we have an excellent foundation for getting through this. I hope I can say the same thing when he's about to turn 16 or 17 or 18.. or 40. LOL
I kept the sappier stuff out of this post. I have a lot of that in me but I just can't let most of it out yet. This is your official warning!! ;)
Friday, January 31, 2014
The Post I Didn't Want To Make
Somewhere inside me I never thought I'd have to write this post.
David passed away Wednesday morning, January 29th, 2014.
I know people often say that someone's passing was peaceful but I'm not sure I ever fully appreciated what that might mean until now.
At 8:54 am I started to give him his next dose of pain meds (due at 9) and I noticed his breathing was a little more uneven than before. Still quiet but definitely uneven. I felt like this was different than the other times his breathing pattern changed and I cuddled up close and held him as he took his final few breaths. I found it somehow fitting that the only lights I had bothered to turn on that morning were the Christmas lights we still have hanging in our room because he asked me to leave them up. They were perfect if there is such a thing. Truly.
He took his last breath at 9:01 and I feel so blessed to have been able to be with him. He said all along that he hoped I would be sleeping or taking a shower or out of the house or something when he passed because he didn't want me to have to live with that memory but it will always be one of my most precious memories. Bittersweet to be certain but what a blessing to feel his pain drift away. To not have to see my love suffer any longer with the hardships the last two years have brought him, both emotional and physical, and know that he's whole again. He has a wanderlust that's been stifled by circumstance and I was genuinely excited for him to get to travel to someplace he has, in essence, been waiting to go his whole life.
Rose and I got Owen from school and he and I had a nice family moment with Dave before they came to pick him up. We don't feel we left anything unsaid. That was part of the blessing of having so long to grieve.
We spent the day surrounded by friends and family, crying, laughing, hiding in our rooms or playing video games if that's what we needed to do (esp if your name is owen... heh) I told him it's ok if he needs space, he can hide from anyone but me and so far he's not even attempting to hide from me. I don't know how I got so lucky. Tim said that Owen is growing into the same type of gentle, spazzy man that his father was. I can't think of a more perfect description.
I feel that every post of this blog for the last 2 years has been a love letter of sorts to David. He read every post up until my last one and I read that one to him. It breaks my heart to lose my best friend but it also broke my heart to watch him suffer. Today, the 31st, is my birthday. I could sit around feeling sorry for myself, and I might do a tiny bit of that, but would rather consider this a gift. To me and to Dave, really. I'm relieved. Ya, I said the secret thing people don't want to talk about. There is relief mixed in with all the pain. There's some survivors guilt for sure but mostly I'm relieved to the point of tears that he isn't in pain every day. I kind of don't know what to do with myself because the majority of my energy revolved around taking care of him. I'll figure it out. We will honor him by finding a new normal.
There will be a service for David at the LDS chapel at 550 North Danebo in Eugene on Tuesday Feb 4th at 2:00 pm. All are welcome. I made a choice to spend my birthday with my son instead of looking to see what the obituary deadline was and it looks as though the Obit may not run until after the service. Oops... I feel pretty terrible about it actually but since there's nothing I can do about it I'll just suck it up and spread the word in other ways. I can only do so much and I suspect he would have wanted me to spend the day with my most favorite person in the world anyway instead of doing unfun stuff so maybe in that way I also honor him. Ya, I'm gonna go with that.
David passed away Wednesday morning, January 29th, 2014.
I know people often say that someone's passing was peaceful but I'm not sure I ever fully appreciated what that might mean until now.
At 8:54 am I started to give him his next dose of pain meds (due at 9) and I noticed his breathing was a little more uneven than before. Still quiet but definitely uneven. I felt like this was different than the other times his breathing pattern changed and I cuddled up close and held him as he took his final few breaths. I found it somehow fitting that the only lights I had bothered to turn on that morning were the Christmas lights we still have hanging in our room because he asked me to leave them up. They were perfect if there is such a thing. Truly.
He took his last breath at 9:01 and I feel so blessed to have been able to be with him. He said all along that he hoped I would be sleeping or taking a shower or out of the house or something when he passed because he didn't want me to have to live with that memory but it will always be one of my most precious memories. Bittersweet to be certain but what a blessing to feel his pain drift away. To not have to see my love suffer any longer with the hardships the last two years have brought him, both emotional and physical, and know that he's whole again. He has a wanderlust that's been stifled by circumstance and I was genuinely excited for him to get to travel to someplace he has, in essence, been waiting to go his whole life.
Rose and I got Owen from school and he and I had a nice family moment with Dave before they came to pick him up. We don't feel we left anything unsaid. That was part of the blessing of having so long to grieve.
We spent the day surrounded by friends and family, crying, laughing, hiding in our rooms or playing video games if that's what we needed to do (esp if your name is owen... heh) I told him it's ok if he needs space, he can hide from anyone but me and so far he's not even attempting to hide from me. I don't know how I got so lucky. Tim said that Owen is growing into the same type of gentle, spazzy man that his father was. I can't think of a more perfect description.
I feel that every post of this blog for the last 2 years has been a love letter of sorts to David. He read every post up until my last one and I read that one to him. It breaks my heart to lose my best friend but it also broke my heart to watch him suffer. Today, the 31st, is my birthday. I could sit around feeling sorry for myself, and I might do a tiny bit of that, but would rather consider this a gift. To me and to Dave, really. I'm relieved. Ya, I said the secret thing people don't want to talk about. There is relief mixed in with all the pain. There's some survivors guilt for sure but mostly I'm relieved to the point of tears that he isn't in pain every day. I kind of don't know what to do with myself because the majority of my energy revolved around taking care of him. I'll figure it out. We will honor him by finding a new normal.
There will be a service for David at the LDS chapel at 550 North Danebo in Eugene on Tuesday Feb 4th at 2:00 pm. All are welcome. I made a choice to spend my birthday with my son instead of looking to see what the obituary deadline was and it looks as though the Obit may not run until after the service. Oops... I feel pretty terrible about it actually but since there's nothing I can do about it I'll just suck it up and spread the word in other ways. I can only do so much and I suspect he would have wanted me to spend the day with my most favorite person in the world anyway instead of doing unfun stuff so maybe in that way I also honor him. Ya, I'm gonna go with that.
Tuesday, January 28, 2014
Thanks For The Pie.
Things are little by little getting quieter around here. Last night at bedtime I asked Dave if he thought he could swallow a couple of pills. I planned to only offer the morphine and the diuretic as they are tiny and I felt they were the more important of the lot. He looked at them and nodded yes. Morphine first. He took a sip of water and I gave him the pill. He drank a bit more then after a moment he made his snarl face which is not unlike his Billy Idol face that he confesses as a teen he practiced in the mirror because Billy Idol was pretty cool. "You didnt swallow it, did you?" *shakes head* "Let me see" *opens his mouth* and there it was. I pulled it back out and let him know that's ok and thats why we have the liquid meds so we'll just use those instead. The nurse prepped me for such an instance so I had the dosage all worked out and written down. I spent a few minutes setting alarms on my phone and away we went on the every 3 or 4 hour schedule. Every 3 hours at night to help him sleep and 4 during the day unless it seems like he needs more. I rested a lot but didnt really sleep. I liken it to a new parent's schedule. Every couple of hours you attend to some need, it's exhausting but it's a labor of love. It makes sense really that we would ideally give someone at the end of their life the same love and attention that you'd give someone at the beginning of their life.
I fully believe that David is still aware of whats going on and he hears and understands what we say to him, or around him. The last couple of days he's done a lot of mumbling in his wakeful moments. Last night his sister and family came to visit, I'm pretty sure he told his sister, "Thanks for the pie" as she was preparing to leave. I know he was saying thank you for coming to say goodbye, and he did say that, it just took a second to get the words to come out right. I'd like to think he was also thanking them for the dozens of Thanksgiving pies we've shared with them over the years. The man likes pie.
This morning (Monday) as Owen left for school David woke and told him bye and he loves him. Thats pretty much the last coherent thing he's said. It's obvious that he hears us and sometimes reacts but doesn't talk much. It takes too much energy. When Owen said goodnight and gave Dave a hug Owen got a kiss on the cheek. That boy means the world to Dave and he continues to show it even when he can't say it out loud.
The missionaries came to visit the other day and offered Dave and I both blessings. He kept saying "bless you too" to me, to make sure I was also taken care of. Like always.
I told Owen Sunday night that I didn't know what would happen this week but we just have to power through. He has finals so I carefully worded permission for him to not have to stress about his grades for half a second. Just do your best and it doesn't matter what the grade ends up being. All we can do is our best. He looked skeptical and wanted to know if I would feel the same way once I see his grades. Hahaha maybe he wants it in writing. For now I'm trying to keep his schedule as normal as possible but it's an abnormal week both at home and at school. I suppose that's fitting. We'll see what the rest of the week brings.
Every day we've seen a small but specific decline in David and I expect that to continue. We're being well looked after by hospice and he seems very comfortable and at peace. I know he's ready to go and while we'll never be ready to let him go I think we're as ready as we can be. I'll update more when my scattered brain can put together thoughts. Thank you for all the messages of love and for keeping us all in your thoughts and prayers. We take it all to heart.
I fully believe that David is still aware of whats going on and he hears and understands what we say to him, or around him. The last couple of days he's done a lot of mumbling in his wakeful moments. Last night his sister and family came to visit, I'm pretty sure he told his sister, "Thanks for the pie" as she was preparing to leave. I know he was saying thank you for coming to say goodbye, and he did say that, it just took a second to get the words to come out right. I'd like to think he was also thanking them for the dozens of Thanksgiving pies we've shared with them over the years. The man likes pie.
This morning (Monday) as Owen left for school David woke and told him bye and he loves him. Thats pretty much the last coherent thing he's said. It's obvious that he hears us and sometimes reacts but doesn't talk much. It takes too much energy. When Owen said goodnight and gave Dave a hug Owen got a kiss on the cheek. That boy means the world to Dave and he continues to show it even when he can't say it out loud.
The missionaries came to visit the other day and offered Dave and I both blessings. He kept saying "bless you too" to me, to make sure I was also taken care of. Like always.
I told Owen Sunday night that I didn't know what would happen this week but we just have to power through. He has finals so I carefully worded permission for him to not have to stress about his grades for half a second. Just do your best and it doesn't matter what the grade ends up being. All we can do is our best. He looked skeptical and wanted to know if I would feel the same way once I see his grades. Hahaha maybe he wants it in writing. For now I'm trying to keep his schedule as normal as possible but it's an abnormal week both at home and at school. I suppose that's fitting. We'll see what the rest of the week brings.
Every day we've seen a small but specific decline in David and I expect that to continue. We're being well looked after by hospice and he seems very comfortable and at peace. I know he's ready to go and while we'll never be ready to let him go I think we're as ready as we can be. I'll update more when my scattered brain can put together thoughts. Thank you for all the messages of love and for keeping us all in your thoughts and prayers. We take it all to heart.
Saturday, January 25, 2014
Chutes and Ladders
Hi All,
There's not really a nice way to say this so I'm not even going to try. David's chutes and ladders game hit a big old chute this week. Ok, maybe I'll try a little. ;) Last time I posted I mentioned that he wasn't eating much and was a little swollen and under the weather. On the bright side his sniffles seem to be gone, maybe because the fog has lifted (outside anyway) and the sun is shining. Everything else has gotten worse. The edema hasn't reduced, he has a hard time waking up and Thursday afternoon he started refusing food entirely. There's a part of me that kind of waited to see if he'd turn around, like he has a few times before, but this time it's definitely different.
At this point he's pretty much sleeping and I'm giving him pain meds as needed to keep him as comfortable as possible. He wakes up on occasion and mumbles a few things then falls back to sleep. He's confused sometimes and mumbles so you can't really understand what he's saying except occasionally he blurts out something obvious. Except when we tell him we love him, he always responds in kind. It's the only thing he responds to without fail. Earlier I was sitting near him, playing with his phone (he gets a lot of text alerts for things, he's funny) and he woke up, looked up and said "You're a nice girl" then fell back to sleep. I don't know how I got so lucky that even now he's still as sweet as can be and has rarely been anything but. Last night he had a silly moment with Owen as Owen was saying goodnight. It's those things we'll remember most.
I told Owen that things weren't looking good on thursday and he replied, "Worst birthday present ever" Seriously. My birthday is next friday, Owen's is Feb 17th and Dave's is March 3rd. I told him it sucks for us but I think it's exactly what Dave wants for his birthday.
I asked the nurse what we were looking at for a time frame here. She got out the reference book they give you when you first get admitted to hospice and there are a few lists of things to look for and what it means as far as how far from death someone is. Handy list to have I suppose. We're seeing most of the things in the 1-3 weeks range but maybe little touches of things in the 1-2 days range. Her best guess was about a week.
Owen has finals next week. What's your first finals in high school without a little bit of extra stress? My heart breaks for what he has to endure. He's amazing, truly. I keep forgetting to notify his principal or counselor or teachers of the change. Mom fail. I'll take care of it before monday, I've just been in a bit of a fog. I guess the fog moved from outside to in my brain.
I told Owen I'm a little scattered and stressed but that I'm trying to make sure everything he needs is taken care of and he smiled his "duh, mom" smile. I said, "not like you can't tell when I'm stressed." He said something like "it would be more unique for you to be not stressed." And we both laughed. Laughing is good. My sis-in-law, Ricki, said "Can you imagine a life without stress? Being able to relax?" I told her I'm not even sure what those words mean right now. I know those days are coming and I don't know when that will be able to happen but right now it's enough to know that some time in the future things will be easier. I keep telling myself so I remember.
One blessing in all of this is that we've had 2 years to say all the things we want to say. Nothing is left unspoken so even though this caught us a little bit off guard with how rapidly he declined I guess in a way we're as prepared as we could hope to be.
There's not really a nice way to say this so I'm not even going to try. David's chutes and ladders game hit a big old chute this week. Ok, maybe I'll try a little. ;) Last time I posted I mentioned that he wasn't eating much and was a little swollen and under the weather. On the bright side his sniffles seem to be gone, maybe because the fog has lifted (outside anyway) and the sun is shining. Everything else has gotten worse. The edema hasn't reduced, he has a hard time waking up and Thursday afternoon he started refusing food entirely. There's a part of me that kind of waited to see if he'd turn around, like he has a few times before, but this time it's definitely different.
At this point he's pretty much sleeping and I'm giving him pain meds as needed to keep him as comfortable as possible. He wakes up on occasion and mumbles a few things then falls back to sleep. He's confused sometimes and mumbles so you can't really understand what he's saying except occasionally he blurts out something obvious. Except when we tell him we love him, he always responds in kind. It's the only thing he responds to without fail. Earlier I was sitting near him, playing with his phone (he gets a lot of text alerts for things, he's funny) and he woke up, looked up and said "You're a nice girl" then fell back to sleep. I don't know how I got so lucky that even now he's still as sweet as can be and has rarely been anything but. Last night he had a silly moment with Owen as Owen was saying goodnight. It's those things we'll remember most.
I told Owen that things weren't looking good on thursday and he replied, "Worst birthday present ever" Seriously. My birthday is next friday, Owen's is Feb 17th and Dave's is March 3rd. I told him it sucks for us but I think it's exactly what Dave wants for his birthday.
I asked the nurse what we were looking at for a time frame here. She got out the reference book they give you when you first get admitted to hospice and there are a few lists of things to look for and what it means as far as how far from death someone is. Handy list to have I suppose. We're seeing most of the things in the 1-3 weeks range but maybe little touches of things in the 1-2 days range. Her best guess was about a week.
Owen has finals next week. What's your first finals in high school without a little bit of extra stress? My heart breaks for what he has to endure. He's amazing, truly. I keep forgetting to notify his principal or counselor or teachers of the change. Mom fail. I'll take care of it before monday, I've just been in a bit of a fog. I guess the fog moved from outside to in my brain.
I told Owen I'm a little scattered and stressed but that I'm trying to make sure everything he needs is taken care of and he smiled his "duh, mom" smile. I said, "not like you can't tell when I'm stressed." He said something like "it would be more unique for you to be not stressed." And we both laughed. Laughing is good. My sis-in-law, Ricki, said "Can you imagine a life without stress? Being able to relax?" I told her I'm not even sure what those words mean right now. I know those days are coming and I don't know when that will be able to happen but right now it's enough to know that some time in the future things will be easier. I keep telling myself so I remember.
One blessing in all of this is that we've had 2 years to say all the things we want to say. Nothing is left unspoken so even though this caught us a little bit off guard with how rapidly he declined I guess in a way we're as prepared as we could hope to be.
Monday, January 20, 2014
It's 2014? When Did That Happen?
Hi All,
It seems we pretty much lost all of 2013. I keep thinking 2012 just happened and it can't possibly be 2014, yet here it is. Things are pretty quiet around here and we're trying to keep it that way. David hasn't been feeling great lately but we're not yet sure if it's advancement of the tumor or just an anomaly.
Christmas and New Years came and went without too much foofarah. Dave got up in the chair a couple times and all seemed mostly ok but afterwards his legs started swelling. A few days later one of them sprung a leak. It's called weeping edema and it's fairly common so there was no real panic, it's just something we have to keep an eye on. That stopped after a few days and the swelling went down then unexpectedly and without obvious provocation the swelling came back. It's in his whole body. The steroids he's been on for months could be making that worse so over the last couple of weeks we've done some adjusting of meds. Getting off the steroids, increasing the diuretic, increasing the morphine to help with the decreased steroid. etc etc.. He's had a few really bad migraines and now has a bit of a sniffle and an occasional cough. We're not sure if he's sick or if it's the terrible weather inversions we've been having in the valley. He thinks he may have a touch of a cold. I hope not seeing as it was this same time last year that he and Owen got really sick and they were worried about Dave getting pneumonia. We don't need a repeat of that.
Basically the hospice team feels that if the change in meds doesn't decrease his edema (fluid retention) they will consider it a progression of the disease. We can't really say that we would consider it anything else at this point. He's been constantly tired and his appetite has gotten much smaller (probably thanks to not being on the steroid anymore) and we're just trying to keep him as comfortable as possible.
I don't mean to only post when things seem to be changing but it's kind of all I have energy for these days. That sounds really bad, I don't mean it to sound all Debbie Downer. I'm not. I'm just focused on the things I need to take care of and not much else of anything.
Thankfully we got the insurance stuff all sorted out for the time being, hospice sorted out until he goes on medicare, our taxes are almost done (because I don't want them lingering over me), the housekeepers came in and did a deep clean of things (thanks to some awesome friends and me not using a gift cert until a year later and the owner of the company being nice and honoring it. Oops) and Owen is being a giant help, as usual. Even in those little teenagery moments he's still helpful... he just sighs about having to be that way. I really couldn't ask for more.
Hope everyone had a happy new year and I'll update when/if we find out more!
It seems we pretty much lost all of 2013. I keep thinking 2012 just happened and it can't possibly be 2014, yet here it is. Things are pretty quiet around here and we're trying to keep it that way. David hasn't been feeling great lately but we're not yet sure if it's advancement of the tumor or just an anomaly.
Christmas and New Years came and went without too much foofarah. Dave got up in the chair a couple times and all seemed mostly ok but afterwards his legs started swelling. A few days later one of them sprung a leak. It's called weeping edema and it's fairly common so there was no real panic, it's just something we have to keep an eye on. That stopped after a few days and the swelling went down then unexpectedly and without obvious provocation the swelling came back. It's in his whole body. The steroids he's been on for months could be making that worse so over the last couple of weeks we've done some adjusting of meds. Getting off the steroids, increasing the diuretic, increasing the morphine to help with the decreased steroid. etc etc.. He's had a few really bad migraines and now has a bit of a sniffle and an occasional cough. We're not sure if he's sick or if it's the terrible weather inversions we've been having in the valley. He thinks he may have a touch of a cold. I hope not seeing as it was this same time last year that he and Owen got really sick and they were worried about Dave getting pneumonia. We don't need a repeat of that.
Basically the hospice team feels that if the change in meds doesn't decrease his edema (fluid retention) they will consider it a progression of the disease. We can't really say that we would consider it anything else at this point. He's been constantly tired and his appetite has gotten much smaller (probably thanks to not being on the steroid anymore) and we're just trying to keep him as comfortable as possible.
I don't mean to only post when things seem to be changing but it's kind of all I have energy for these days. That sounds really bad, I don't mean it to sound all Debbie Downer. I'm not. I'm just focused on the things I need to take care of and not much else of anything.
Thankfully we got the insurance stuff all sorted out for the time being, hospice sorted out until he goes on medicare, our taxes are almost done (because I don't want them lingering over me), the housekeepers came in and did a deep clean of things (thanks to some awesome friends and me not using a gift cert until a year later and the owner of the company being nice and honoring it. Oops) and Owen is being a giant help, as usual. Even in those little teenagery moments he's still helpful... he just sighs about having to be that way. I really couldn't ask for more.
Hope everyone had a happy new year and I'll update when/if we find out more!
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