avantgardener

Well, it has been 2 years since Larry's stroke. Obviously I have moved on quite a bit, since I haven't been on this site in a long while. It's funny how it works - as long as I keep moving, it's like when you are swimming and your hair streams out behind you - you don't even notice it. It's only when you stop, and it swirls around you, that you notice it's there. I keep very busy, and for the most part don't give myself a lot of time to think about how much has been lost or what has changed. Larry is well...in a strange way. Since the stroke he has lost a lot of weight, and his blood pressure and cholesterol are better than they have been in all the years I've known him. Physically he is quite healthy except of course for the paralysis, and ironically he wil probably live a longer and healthier life than he would have had the stroke never happened. Mentally it's another story - he has enough brain function left to know that what has happened to him is a tragedy, and he's pretty depressed. Antidepressants did not really help, but being able to stay at home as opposed to in a nursing home has been very good and probably the only saving grace. He has two wonderful caregivers now, and I've set it up so that one of them is here from Friday morning until Sunday morning - that lets me get out on weekends and see friends and have some semblance of normal life. He would rather I was here all the time, but I need some sanity and this is the way it works for me. I've also changed my work situation so that I work primarily from home, as opposed to having to go into an office every day. My boss was very accommodating about it, and it has worked out well for all of us. I can be here to monitor what is going on, and that gives both me and Larry a certain comfort level. My job has me out seeing clients several times a week, so I still need the caregivers, but the rest of the time I'm here and that seems to work out. It took some creativity to make it happen, but I would recommend it to anyone who is a caregiver - much better to be home and have a flexible schedule than to be tied to an office where it's a continual pain if you have to leave to take care of business. When Larry first had the stroke, I think I had the idea that there would be an adjustment period and then things would be normal again. Two years into it, I realize that things will never be normal again - if by "normal" you mean that you will be the same person you were before. I will never be that person again - and that's neither good nor bad, it's just different. Larry continues about the same. He sleeps maybe 12 hours a day and does not engage much with life in general. But he's home where we can look after him, and he has a very pleasant room, and enjoys his TV, and is as comfortable as can be expected. He really doesn't want to get "better", at least not in any way that involves therapy or hard work. This is what he's settled for, and I have to respect it. I wish he wanted more for himself, but he doesn't and I won't make him miserable by pushing him in directions that he has zero interest in going. I try to take beter care of myself, and walk every day, and make sure I have time to myself. Common sense stuff. Seems to work OK, and I've adapted pretty well I think. It's not the life I expected, but it's the life I have...and it could be very much worse so I remind myself of that and try to be content. None of us ask for this or want it, but it happens, and how we deal with it defines who we are in many ways, I think. We always have choices, even when we think we don't. xxxooo ..jm..

I just read all the posted responses to my "anniversary' blog message...I can't believe that so many people remember me after I've been so remiss about staying in touch. Guilt! Guilt! But, so good to know that you are all here. Larry and I made it through the day pretty well. It hit me a couple of times, but the good thing about being this busy is that you just don't have time to feel too sorry for yourself. I reminded Larry tonight that it's been a year, and started telling him about what I remember of that day, but he shushed me and didn't want to hear it. I don't blame him, I'm sure that remembering how terrifying that day must have been is not fun for him. He really lives pretty much in the moment these days and doesn't seem to spend a lot of time thinking about the past. If I mention something from the old life he usually just shrugs it off. Like Ray, he's content not to strive for very much, and maybe that is OK; he worked hard all his life and now he's finally getting the rest that he needed more than I ever realized. Well, enough for now. Just wanted to say thank you again for all who have been and continue to be such dear friends. I'll check in when I can, and certainly wish that I had the time to be here more often!! xxxoo -Janine

Tomorrow is the anniversary of Larry's stroke - and though it certainly won't be an anniversary that we'll celebrate, I will definitely be marking the day. I'm proud of us both for having lived through this and come more or less out the other side. There were many days when I didn't believe that was going to happen. Looking back on the last year is in many ways like reading about someone else's life: interesting, but very third person. There's a weird detachment, especially in the early weeks and months, and if I hadn't been scrupulous about writing things down I would have no memory at all of some of those days. Larry's doing well, and although he gets very frustrated by his inability to communicate he's adjusted to his new life. I know that he does not miss going to work, and in fact I believe now that part of the reason why the stroke happened is because he was so desperate to get out of the trap of his job, which had become unbearable to him. Interesting how your body will find solutions to problems that the brain can't solve on its own. In any case, although his world is very small these days he seems content with being at home, watering the plants, watching TV and sleeping much of the day. He's at peace most of the time, and likes his routine, and I think is happy not having any responsibilities anymore. As for me, I'm stretched pretty thin but have also adjusted. It's hard sometimes to take care of everything, but there is also a freedom that I didn't have before. If I want to do something I just do it, no more consultations back and forth or having to make compromises. I'm tougher than I used to be, and I spend less time dithering about what I should and shouldn't do, mainly since I don't have the luxury of wasting time anymore. This is not the life I would have chosen for either of us, but since it's the life we have I'm making the best of it. The alternative is not very appealing. So, things are OK. Hard to believe that it's been a year. I called Larry's office today just to hear his answering machine message (which the university still has not changed!), and it was very odd to hear him speaking. I'll be sorry when they finally do change the message, though knowing how things work in the Cal State system I may have a very long wait before that day comes. In the meantime, I like to hear it once in a while - it's like looking at a picture of the Twin Towers before 9/11, that same nostalgia for a time that's gone and that I didn't appreciate enough. Presumptuous to equate our personal catastrope with something of that magnitude, but that's what comes to mind when I think about it. Thanks to everyone who has helped us get through this year. The people on this site have been wonderful and got me through the worst of the worst times. I truly would not be here without you - there were days when I logged in here instead of swallowing a handful of pills, and I'm sure I'm not the only one who can say you all literally were livesavers. Not to be too dramatic, but it's true and thanks really do not cover it, but there you are. xxx's and ooo's -Janine

I started keeping an informal diary/journal when Larry first had his stroke, mainly because I found that so much was happening so fast that I could not remember from one day to the next what was going on if I didn't write it down. At first I wrote in it every day, and the handwriting is very dense and cramped and anxious-looking when I go back and read the entries from those first weeks. As time passed, there were days when I wrote only a few sentences, or nothing. The writing loosened up and started to look more like my usual meandering scrawl that somewhat resembles my thought process - sentences start off purposefully, but then mid-way through the letters get a bit sloppy, and by the end of the sentence anarchy pretty much holds sway. Like looking up a word in a dictionary, but becoming distracted by all the other words you stumble across that are so much more interesting (and then I forget what I was looking up anyway, half the time). Anyway. Here was my entry for December 31st: "Dear 2008: I'm still here, but you're not. Ha! I win. So long, and don't let the door hit you in the ass. Love, Janine" What a terrible year. But, despite my best efforts I have learned a lot. Patience, and humility (some, anyway). How to grow a backbone and stand up to people that I'm intimidated by, when I know they are wrong (i.e., doctors, hospitals and such). Compassion - it really is NOT all about me. My universe was pretty small before Larry's stroke, and I confess that I felt like I was at the center of it most of the time. Larry's stroke has helped me to understand the value of service to others and to appreciate the good things I have, such as being able to walk, and read, and communicate. Doing what you have to do because you have no choice really does build character and make you a stronger person - whether you like it or not, which often times I don't. But I do it anyway, and over time it does seem to become less difficult. I'm not by nature a "positive spin" kind of person. If there is a dark side to something I will usually find it, and dwell on it longer than necessary, and throw in lots of self-pity. Since Larry's stroke, I find that I am just too busy to do all of that (hilarious typo - I originally typed "busty" there instead of "busy" - in my dreams, I guess!). I've become a much more pragmatic person than I was before, and more interested in getting things done than in how they get done or whether or not everything is perfect. I don't care about perfect anymore. I care about Larry being comfortable and staying out of the ER and/or the hospital. I care about me being able to function at work and come home at night and still have a couple of hours to give to my husband so that we have some semblance of a life together. I care that my family and friends are still here and supporting us and have not deserted us, and count myself very lucky for that. I care that people with disabilities are so often invisible to the world, and I care about doing whatever I can to change that. I care that our healthcare system is so woefully inadequate when it comes to caring for long term issues like stroke, and I am not shy about telling people what Larry's stroke has done to our family and how much it costs us out of pocket to pay for his care, even though we've had insurance all our lives. People are shocked, because they have no idea that this is the reality, but they aren't shocked enough because it still hasn't changed. Larry is about the same. He hasn't had any great improvements, and I suspect that his condition isn't going to change a whole lot going forward. It's been 9 months already, and he refuses to participate in therapy programs or do anything to try to improve his lot, so at best I can be glad that at least he's home and not in a nursing "home" (death home, if you ask me). He's very depressed and does not eat much, but does perk up when I come home at night and seems happy to see me. When the weather warms up I hope I can get him outside more and that he'll enjoy the spring time. I hope that 2009 is better for all of us. Hard for me to be objective because 2008 was such an emotional trauma for us, but it seems like everyone is suffering through difficult times right now, and hoping that the tide is turning. I know I feel that way. The Chinese say 7 years of good luck, 1 year of bad - so if 2008 was the year of bad luck that should mean that we have 7 good years ahead of us, and I could not be more ready for that!! xxx's and ooo's -Janine

Vi, I forgot about you and your pole dance...the nice thing about having lost my mind this year is that I can be entertained by the exact same thing over and over again - it's just like hearing it all new for the first time! See, there really IS a plus side to everything...

Well, here I am again. Things have been pretty up-and-down for the past month. Larry landed in the hospital twice - the first time because he was having atrial fibrillation, and the second time because of a bad reaction to Coumadin, which he was given as part of the a-fib treatment. The Coumadin caused Larry to have internal bleeding, and he ended up with a major hematoma around his kidneys. The hematoma pressed on the kidneys so that he couldn't produce urine, and of course that is not good. To make a very long story short, he was in the ICU for 3 days, then in the hospital for a week, and finally sent home on NO blood thinners (not even aspirin), and a note in his chart that he can't tolerate them. Duh. Since the hospitalization, which was right before Thanksgiving, Larry has had a lot of trouble bouncing back. He is sitting in the wheelchair twice a day, but only for about an hour at a time, and he looks uncomfortable the whole time he's up. He doesn't want to go for walks or go outside, and seems to be uninterested in doing much of anything. At least he's comfortable when he's in bed, and is enjoying watching football on TV (which he hardly ever did before the stroke). I'm trying to get him off as many of the medications as I can; I don't feel like they are helping him much, and I think he's over-medicated, given that he was on a dozen different things at one point. He's down to 3 daily meds now: Pravastatin, which has gotten his cholesterol from 280 to 170; Sotolol for the atrial fib (which seems to be working); and Zolpidem to help him sleep. He's off the anti-depressants, which were not helping him, and off the BP medication (he doesn't need it, now that he's lost 60 lbs), and definiely off blood thinners! I found out that Coumadin was originally marketed as rat poison, and I can well believe it. It is nasty stuff. We had a great Thanksgiving, with 20 people over for a fabulous dinner that Larry's daughter and sister cooked. I just stood back and watched the masters at work - they are amazing cooks and I don't even play in their league. So much so that I've decided to make Mexican food for Christmas - I don't even want to try to follow the turkey that those two cooked up. It was wonderful that everyone came to us, since we can't travel, and I think it was good for us both to have a lot of company and all the excitement. Judy and Cynthia (sister and daughter) made it very easy for me; all I had to do was set the tables and pour the drinks! They have been so good to us through all of this, and I'm really lucky to have them in my life. And now we are heading into the home stretch for Christmas - again - already! Where has this year gone?? I'm sure I don't know. We've adjusted as well as we're going to, I think - things won't ever be the same, but they're not insurmountable, and life is moving on. The next few months will be challenging as I get Larry's retirement settled, and get his Social Security in place, and all the stuff that has to happen. Believe it or not, he is STILL collecting full salary and on sick leave, which will finally be used up on February 10th (no wonder the State is bankrupt - teachers may not make much, but their benefits are amazing). Once that happens, he can collect disability insurance and other things, and then formally retire in April 2009 when he turns 66. A ton of CalPERS and Social Security paperwork, but I'm getting through it. Looking forward to Christmas, and then to saying goodbye and good riddance to 2008! I'm doing OK. I feel like I've come a long way, and like there is still a long way to go. I'm getting from one day to the next pretty well, but can't say that I feel like I'm living a life at this point - my life is really Larry and making sure that his needs are met, and that's just the way that will have to be for a while. Those vows turned out to be serious business! I go to work, and come home, and do chores in the evenings and on weekends, and go to sleep, and do it again the next day. Just like everyone else - I don't feel sorry for myself; I know that I'm lucky that I can continue to work and maintain some semblance of normalcy. I have dear friends and a great family, and a lot of support; more than many people have, and I'm grateful for that. Life really does go on, and that's maybe the biggest surprise out of all of this. At first I felt like the world had come to a stop, and then I figured out that it was just me, and then got myself moving again, and found that the world hadn't stopped at all - I just dropped out for a bit. Now I'm trying to get back up to speed, and although things will never be the same again there is some normalcy and routine now, and that's very comforting. I hope all is well with everyone here, and I'll try to check in when I can. xxx's and ooo's ..jm..

I'm embarrassed by how long it's been since I've written here. Insert all the usual excuses - no time, too busy, etc. etc. - all are true! I guess the real reason is that I've come out the other side of the initial craziness, and am not feeling as needy as I did at first after Larry's stroke. Weird as it may seem, all of this has become a routine, and although I would never have chosen it, this is our new life and we've adjusted. It's been 7 months since Larry's stroke. Seems like a lifetime ago! I was a totally different person B.S. than I am A.S., and Larry is too, and somehow we have managed to make it all work. Larry is still about the same - pretty much total paralysis on his right side, no speech or writing, and confined to a wheelchair. Still, there are a lot of good days. He gets up in the chair and we go out, or we go into the back yard and water the plants, or just into the living room to watch TV. He likes being at home, and doesn't seem to want more out of life, so I respect that and have stopped pushing him to go to therapy appointments or improve his condition - he doesn't want to, and I can't force him, and that's not how I want it, but it's not about me! I'm glad to have an outside job that keeps me in the "real world" for most of the day. Aside from needing the money, I also need the time away from the aftermath of the stroke. As much as I'd like to be able to care for Larry myself, the reality is that I would be totally depressed and frustrated if I actually could. Jean is so right - caregiving is not for sissies! I count myself so fortunate that I have a solid career and can afford someone to come in during the day so that I can continue to work. I like looking after Larry at night and on the weekends, and I'm grateful that Cecilia manages things when I'm not here. That breathing space is the difference between sanity and craziness for me. So, I hope everyone is well, and that I'm forgiven for being quiet so long. There just are not enough hours in the day, and I end up not logging on at home for days on end. I promise not to disappear, but surely do wish that I had more time!! xxxoo ..jm..

I'm embarrassed by how long it's been since I've written here. Insert all the usual excuses - no time, too busy, etc. etc. - all are true! I guess the real reason is that I've come out the other side of the initial craziness, and am not feeling as needy as I did at first after Larry's stroke. Weird as it may seem, all of this has become a routine, and although I would never have chosen it, this is our new life and we've adjusted. It's been 7 months since Larry's stroke. Seems like a lifetime ago! I was a totally different person B.S. than I am A.S., and Larry is too, and somehow we have managed to make it all work. Larry is still about the same - pretty much total paralysis on his right side, no speech or writing, and confined to a wheelchair. Still, there are a lot of good days. He gets up in the chair and we go out, or we go into the back yard and water the plants, or just into the living room to watch TV. He likes being at home, and doesn't seem to want more out of life, so I respect that and have stopped pushing him to go to therapy appointments or improve his condition - he doesn't want to, and I can't force him, and that's not how I want it, but it's not about me! I'm glad to have an outside job that keeps me in the "real world" for most of the day. Aside from needing the money, I also need the time away from the aftermath of the stroke. As much as I'd like to be able to care for Larry myself, the reality is that I would be totally depressed and frustrated if I actually could. Jean is so right - caregiving is not for sissies! I count myself so fortunate that I have a solid career and can afford someone to come in during the day so that I can continue to work. I like looking after Larry at night and on the weekends, and I'm grateful that Cecilia manages things when I'm not here. That breathing space is the difference between sanity and craziness for me. So, I hope everyone is well, and that I'm forgiven for being quiet so long. There just are not enough hours in the day, and I end up not logging on at home for days on end. I promise not to disappear, but surely do wish that I had more time!! xxxoo ..jm..

It's been really busy around here, and I have not had much time to write. The days seem to get away from me, and are gone before I know what happened. Larry's been a bit under the weather the last few days - nothing serious, but the heavy duty antibiotics that he's had to take because of his recent urinary tract infection have wreaked havoc with his system, and not to give too much information, but if I say that it's been a purgative experience for him you will get the idea. We will both be glad when he's finally done taking them tomorrow. In the meantime, I'm concerned that he may still have the infection. Again, I hope I am not giving TMI, but his urine smells very strong and is cloudy. I called the Kaiser "visiting nurse" today to ask her to come out and see what she thinks, and also to check on the catheter bag, which leaked all over the floor last night. I left messages for her all day, starting at 7AM and ending at 8:30 PM, and never got a call back. I'm pretty disgusted - there's no accountability at all, and no consequences if she doesn't call me back, and in the meantime here we are not knowing what to do and totally at her mercy. If I haven't heard from her tomorrow I will need to get Larry to the doctor, which is always a major production for everyone. Boy, is this frustrating sometimes! Larry's son Eric and his family were here yesterday evening, and we had a chance to celebrate Eric's birthday together. That definitely perked Larry up. He always likes having visitors, and so do I. Since we don't get out a whole lot it's nice when people come to see us. Cecilia marinated chicken that we (as in "Eric") grilled, and she also made a Chinese noodle dish that she told us is traditional for birthdays - long noodles for long life, or some such thing. It was very good, and everyone enjoyed it. Our granddaughter Lea liked slurping up the noodles and ate quite a bit of it; definitely a hit. Lea is 18 months old now has learned how to jump, and we had fun watching her show off her new skill. Instant entertainment! Today we are back to having contractors in the house again. The rooms that we left carpeted when we did Larry's bed/bath remodel are just not working out; moving the wheelchair on carpet is exhausting and is starting to really bother my back, so I finally decided to go ahead and get the laminate floors put in the other rooms. I can't afford to start having back problems, and I worry about Cecilia too; she doesn't complain, but I know it's hard on her as well. Fortunately the contractor had a cancellation on a big job and can fit us in right away; I was expecting it to be mid-October at the earliest before they could start, but they began pulling up the carpet today, and I am not sorry to see it go. The wood floors underneath are actually in decent shape, and if not for the wheelchair it would make sense to re-finish them, but I don't think they would stand up to the wear and tear the way that laminate does. In any case, it will be at least a week until it's all done, and I'm really looking forward to seeing it finished. After that I will see about painting the rest of the house, and then I can exhale and relax for a while, I think. My mom is home from the nursing facility after her stroke, and doing very well. Luckily it was mild in comparison to Larry's. My sister Barbara is living at her house for the next few weeks while her (Barbara's) house undergoes renovation after the flood disaster that they had - a hot water pipe burst while they were at our house the night of Larry's party. Barbara has been wonderful, and has been looking after Mom, cooking and cleaning, and making sure she's OK. Larry (we are both married to Larrys, which gets confusing) is staying in a hotel in Thousand Oaks, where they live, since he works too far away to make staying at Mom's practical, so the two of them really have a lot going on, between Mom's issues and their house. You can have 2008 as far as I'm concerned - this has just not been a great year! At least we can hope that all the trauma and bad stuff happened this year, and that we're done with it. My friend Mavis called me today because she has a friend whose father just had a severe stroke and she is totally lost as far as what she needs to do. Mavis asked if I would call and talk to her, since she's going through a pretty tough time. It was strange to be the one doling out advice, and it made me realize that a lot has happened since April 22nd - I'm not a newbie anymore. We were on the phone for about an hour, and although most of what I had to offer was just moral support, I think I gave her some good practical advice too. It was nice to be able to give something back to someone after all the help I've gotten from so many people, and strange to realize that it's only been 5 months since Larry's stroke. In many ways, it has literally been a lifetime ago! So, that's all the news. I hope all is well with everyone. xxxoo -Janine

It's been a pretty good week, all things considered. I'm still a bit sore from the surgery, but nothing major, and I've been able to go back to work with no problems. I feel a bit guilty about how much I liked being in the hospital - maybe it's because they wouldn't let me eat, so I didn't have to put up with hospital food! I lost 10 lbs, which means I'm down about 50 lbs now since Larry's stroke, and I feel wonderful - I suspect now that the gallbladder problem was creating symptoms for about a year that I didn't realize were there. My energy level has gone way up since the surgery, and I don't have the "tired all the time" feeling that I had before. I think there were a lot of toxins in my system because things weren't working right, and now it's starting to go back to normal. My mood is much improved, and I don't feel nearly as overwhelmed as I did before, so I guess it's good that all of this came to a head when it did. Larry had a good week too. He's been very interested in watching movies on his DVD player, and when the stroke first happened he was totally not into that at all. If I go in to check on him at 2AM, he is usually watching a DVD. I think it's good for him, not only for the stimulation, but because operating the whole TV/DVD system is quite complex and must make him think his way through it. I've also come across him reading books several times - or at least looking at them - last night it was "The Notebooks of Charles Darwin", which is not exactly light and fluffy. I don't know how much of it he is getting, but he's at least trying to read and I find that very encouraging. Cecilia continues to be a godsend to us. She says that she has worked for people before us that were not very nice, and I think she wasn't treated very well. I think she is wonderful and try to make that clear to her, and the more I show her how much we love her the more she opens up and wants to help us. She does a lot more than her job description says she is supposed to do - I love coming home to an immaculate house and all the laundry done every night (that's more than I ever used to do!). I don't know what I would do without her, and Larry seems to like her also - a big step for a very private man who was getting pretty crotchety in his old age! She really takes great care of Larry, and of me, and I try to tell her every day how much we appreciate her. Larry's kids made up a big gift basket for her after she helped out so much when I had my surgery, and she was in tears over that...she really is a sweetheart, and not having to worry about what's going on when I'm not home is such a huge relief. There are still issues, of course. I do not like how angry I get sometimes with Larry - small things set me off, and sometimes I yell at him when I think he's not trying, or when he shrugs and doesn't seem to care. That is not the person I want to be, but I get so upset that I can feel myself losing control. I try to just walk out of the room for a while to cool off, but it doesn't always work. I also find that as I'm becoming more independent by necessity, I'm becoming less tolerant. I used to be pretty deferential when it came to the roles in our marriage, and that was OK because I'm old-fashioned and liked the idea of a man having his work and me having mine (my mother, who burned her bra in the '60s, would die if she heard me say that!!). Now that I'm forced to be more self-sufficient, I find that I can do a lot more than I thought I could. Tonight I took apart the pump to our big backyard fountain, cleaned it out and got it running again. While I was on a roll, I also cleaned the pump to a smaller fountain that had quit working. They both work fine now, and I feel quite proud of myself for figuring it out and not caving in and calling someone. On the other hand, I did have an exterminator out this week when I found a wasp nest the size of a grapfruit up under the eaves when I came home from the hospital. There are some things I am not going to touch no matter how empowered I may be trying to feel! Larry would have dispatched it in 5 minutes, but I'm just not going there...they were crawling all over the outside of the nest, and it made my toes curl up just watching them. I do believe that you should call professionals for some things, like doing your taxes, trimming your trees and killing wasps...so I concede defeat on that one. Larry's still boycotting therapy. I have stopped pushing him for now, I think we are both worn out about it. I'm angry that he won't do it, but it is HIS life after all...if he doesn't want to do it, I can't force him, and maybe it is not my place to try. I don't know what I can do to help him at this point. Should I leave him alone and let him enjoy his remaining years as best he can? Or should I keep pushing him when it makes us both upset and seems to go nowhere? I don't like giving up, but feel like this is a battle I can't win. For now I am stalemated...I'll give it a few weeks and try again, and see if he's more amenable to the idea; if not, then I don't know what. Frustrating. So, I hope everyone enjoys the long weekend. I know I'm looking forward to it. I'll try to get Larry out for a long walk and maybe dinner out, and that will be good for us both. I'm going to paint the little bathroom again (for the 4th time); maybe the color I chose this time will work. So far I am 0 - 4, and the bathroom right now is a sort of battleship gray color with white trim (it looked green in the picture!). I'm bought a lighter green this time, and what seems to be a pretty, warm orange, and I'll try those...when all is said and done I'll bet it ends up back to being white! -Janine

Well, I was right - I shouldn't have asked what was next! I haven't been on this site for a few days, because I had unexpected gallbladder surgery on Tuesday. We were having dinner Sunday night and I was suddenly in excruciating pain; I had to call 911 after 3 hours when it still had not passed. It turned out that I had gallstones and pancreatitis, so the gallbladder had to go. The surgery went fine, and they sent me home yesterday afternoon. I'm sore now, but all things considered I feel pretty good, and I can go back to work Monday. Cecilia stayed here at the house with Larry the whole time, and it was so good to know that everything was OK here and that I didn't need to worry. She is an angel, and we are so lucky to have her as part of the family. I still can't believe that we found her on the first try - I expected to have to go through several caregivers before finding one that worked out. Some things do go well. We had to take Larry to the ER at 4AM today; his catheter became totally blocked and nothing could get out, and he was in a lot of pain. He has a UTI (fortunately mild) and they changed the catheter and sent him home with antibiotics. He seems fine now, no fever or any problems. Mom is doing OK after her stroke; she'll be in a nursing home for a few weeks, but then should be able to go home. She is going to need a lot of help, though, and can't live alone anymore. She is VERY unhappy about that, but it's to the point where it's non-negotiable and she's going to have to make the adjustment. My sister has been wonderful looking after her and making sure she's being cared for, and I feel bad that I haven't been able to help much, but I think she understands. So, I am hopeful that there won't be any more drama for a while. I've had enough. I'm going to rest for the remainder of the week, and then get back into the normal routines on Monday, and hope that nothing ELSE happens any time soon! -Janine

Ann...that is so funny...I got what sounds like the exact same survey the other day - it had questions that I can't remember now, but one was "who do you miss the most"?, and my answer was "Larry, before the stroke". It's true that it feels as though he is gone, and someone else is here in his place. The hardest thing to get used to is the way he "yells" at me now. He would never have done that before unless were having a huge fight, which was almost never. It really gets under my skin, and hurts my feelings, although I know it's not really him talking. I feel so despondent sometimes! It is hard to deal with this at this best of times, and when the stress levels go up for whatever reason there is just no resiliance left in me. On the other hand, it takes a lot more now to get me upset than it used to. Small things really do not matter very much when I think about the BIG things that have happened to us. I guess that helps...it's not much of a trade-off, but OH WELL. Thank you, Asha - I thought it was Jean who had that great suggestion, but was not sure and too tired to go back and look. There are some amazing resources out there if only you can find them. xxxoo -Janine

Wow, it's been a while since I've been able to write here. There has been a lot going on - my mom had a stroke earlier this week, and that has certainly been eventful. Hers was on the right side of her brain in the occipital lobe, so her speech is not affected, but her balance and coordination are, and she can't seem to see anything in her left field of vision. She was in the hospital having heart problems when it happened, and that was good because at least they caught it right away. She had a pacemaker put in today, which should help, but she is very weak and we don't really know yet what the extent of her impairment will be. The doctor said no more driving and that she can't live alone, and she is NOT going to like that, but the time has come when she is going to have to go with the program and maybe she won't fight it too much. Larry's caregiver will come in on Sunday for a few hours so that I can drive out to see Mom (an hour away), and my sisters and I can talk to her about options. I'm sure that will be a fun conversation - Mom is very stubborn and thinks she is independent, although she has not been for some time, and I know this will very hard for her. Just glad that one of my sisters has been right with her this whole time, because I haven't even been able to get out there to see her and I feel very guilty about that. We had Larry's "welcome home" party last week, and it was great. We had about 50 people, and we were out in the back yard making noise until 2AM...fortunately we invited all the neighbors, so nobody complained! Larry had a lot of fun and enjoyed seeing colleagues and friends that he has not seen since his stroke. We had way too much to eat and to drink, and made a giant fire in our backyard fireplace that got a little out of control but looked very pretty. It took 2 days to clean it all up, but it was worth it and we had a blast. Larry still won't go to therapy. I have an appointment with a neurologist tomorrow, and he does not want to go to that either, but I'll go without him anyway just so that I can get some of my questions answered. I'm struggling with how to accept that Larry just doesn't want to cooperate with my master plan for helping him get better...even though he's impaired, it's still his life, and if this is what he wants I can't do much but concede the point. He did go to an OT appointment last week, but was very unhappy about it and I don't think he'll go again. We'll see - so far he has made it very clear that he doesn't want to go and wants me to quit bugging him about it. I don't know how to help him. I got him into a great speech therapy program at the university where he used to teach...thank you again to whoever it was here that suggested that, I'm sorry I can't remember who it was. Their program is world-class, and there is a 3 year waiting list, but since he was faculty they got him in...of course he would not go at the last minute...I am so sad for him, and angry that he won't try, and trying to get past MY expectations, which are really sort of irrelevant. So, life is very complicated right now. I'm trying to get enough rest (hardly ever do), and eat right (so-so) and exercise (again, so-so); there just are not enough hours in the day. I don't think it will get any worse than this, and that's good, because I'm about full up as far as how much more stress I can take these days. Well, at least I am in good company! xxxoo -Janine

Oh, Ann - how I wish I had your faith...but I do believe that all of this is a random accident, and I don't think there is any higher power in the way that you're talking about, unless you accept physics and science as a higher power, which I suppose I do. I accept that there are many things that are beyond our capacity to understand, at least for now, but to me religion is like magic in the dark ages. There was a time when nobody understood what an eclipse was, and people thought it must be happening because the gods were angry. My personal opinion - and please believe me when I say that I do respect the opinions of others! - is that modern religion is only a few steps away from that kind of logic. The idea of taking something on faith is just abhorrent to me, and seems like a repudiation of everything that we as humans have the capacity to understand with the amazing brains that evolution has given us. But, enough small talk!

Oh, Ann - how I wish I had your faith...but I do believe that all of this is a random accident, and I don't think there is any higher power in the way that you're talking about, unless you accept physics and science as a higher power, which I suppose I do. I accept that there are many things that are beyond our capacity to understand, at least for now, but to me religion is like magic in the dark ages. There was a time when nobody understood what an eclipse was, and people thought it must be happening because the gods were angry. My personal opinion - and please believe me when I say that I do respect the opinions of others! - is that modern religion is only a few steps away from that kind of logic. The idea of taking something on faith is just abhorrent to me, and seems like a repudiation of everything that we as humans have the capacity to understand with the amazing brains that evolution has given us. But, enough small talk!

Sorry I wasn't clear...these are notes that he made before the stroke, not after. In reading his notes I feel like I was totally missing how much trouble he was in. Or, closer to the truth would be to say that I knew but chose not to intercede, which is worse. Not sure what I could have done, but it seems like he knew he was headed for a train wreck and did nothing to stop it, and neither did I. I believe he thought he was going to die, and that he didn't want to live anymore and was accepting of it. Imagine his surprise to find out that things are not always that clean! And mine, for that matter. -Janine

Larry has always been an inveterate writer of notes, and I find his scribblings all over the house (I affectionately call them FLNs, which stands for "F***ing Little Notes", and they are everywhere - tucked into magazines, jotted on Post-It's and stuffed into books, written on the realtor's free note pads. As he watches TV late at night he woudl make notes about anything that he found interesting and then go research it later. Just part of who he is and I was not pahing a lot of attenion. I should have been, because these are just a handful of the hundreds that I've found: -I expect to live less than 5 years -My cremation will not be complete until the last of my books are burned -Disengagement: I have always had trouble understanding people who believe in God -Lost Life: Vita perdita -Retrogenetics/devolution It goes on and on. There is stuff like this all over the house. I feel like the wife in "A Beautiful Mind", who went out to the shed and found her husband's crazy notes all over the place and finally realized something was wrong. Larry is/was a brilliant man, but came with that whole dark side that seems to plague genius, which he was, and still is, somewhere. I miss him. xxxxoo -Janine

Well, thank you, everyone! I feel like I just got a round of applause or something...and it's good to hear that I've made progress. It's true - when I think back to those first awful days I really can't remember them very well. It's a blur, but I wrote it all down, and when I look back to what I wrote at that time it is very scary. There were days when I was right on the edge and lots of times when I wasn't dealing with reality very well at all. There are still a lot of rough days, but at least I don't feel like my sanity is slipping away any more than usual. One of my cats is named Scarlett. She's an orange tabby, and her full name is Kitty Scarlett O'Haira (for the red hair - get it? - it seemed SO clever at the time!). She's a pretty fearless little soul though, and so maybe it fits her after all. xxx's and ooo's -Janine

As for this day: Let me just say that I couldn't make this one up if I tried... Larry's occupational therapy was scheduled for 2PM, and he could not have been more cooperative. Cecilia (his caregiver while I am at work) and I had it all planned out perfectly. The transit service picked them up right on time, and got them there at 2:00 on the dot. Cecilia had the exact change for the shuttle, as required, and also had the Access Paratransit ID card, Kaiser ID card, notebook, and all the other stuff that she needed to bring, since we had gotten it all ready the night before, just to be sure we didn't forget anything. I left my office to meet them and also got there right at 2:00; we ran into each other going in. Perfect timing! Larry was in a good mood, especially because he had on his favorite gardening hat, which has seen better days and has a burn on it from when we accidentally left it on top of the outdoor fireplace, but no matter! He really likes to wear it now to any kind of medical appointments for some reason. I think it's his lucky hat that protects him from Western medicine, or something. So, I was in a haze of joy thinking that FINALLY Larry was going to get some therapy. I noticed that the assortment of people in the waiting room seemed a little odd, but Larry in his burnt gardening hat and bedroom slippers and Cecilia in her Winnie the Pooh nurse's smock didn't exactly look normal either, and who am I to judge, anyway? I went sailing up to the registration window, copayment clutched in my hand, confirmation number written down, name of the therapist memorized, and told the receptionist that we had arrived. That's when she let me know that the office we were in only does...psychiatry! (cue the sound of a balloon deflating) No occupational therapy, no speech therapy, no physical therapy. Psychiatry. Only. Which was convenient, because I felt at that point I felt like a nervous breakdown would have been totally appropriate, but unfortunately I didn't have an appointment and so that wasn't an option. Too bad, it would have at least made the trip worthwhile. It turns out that the office that does PT and ST is in the same city as the psych office (Lomita), but on another street. The Kaiser appointments person who gave me the address of the wrong facility apparently did not know that there are two offices in Lomita, and of course I didn't know that either, although I certainly know it now and am not likely ever to forget it. I called and talked to her supervisor and let him have it, but the damage was done and there's not much point in being angry about it. Finally, there was nothing to be done but to call the paratransit service and try to convince them to send a shuttle to pick up Larry and Cecilia earlier than 3:45, which was when they were originally scheduled to be taken home. They did send someone out earlier, but they still had to wait from 2PM until 3:15, for nothing. At least the room had working air conditioning, and so it wasn't as bad as a day at Country Villa Nursing Home Resort, I guess. Larry was a trooper through all of this and didn't complain about the mix-up. I think he enjoyed watching all of the interesting people...the black woman with platinum blonde dreadlocks who was talking to herself...the very friendly and talkative young man who could not stop pulling up his socks...the lady in the plaid skirt and floral blouse...she definitely had her eye on Larry's hat, which would have totally completed her ensemble. I think Larry was also OK with the fact that he avoided therapy again, and that this time nobody could be upset with him about it. He was either liking the air conditioning or gloating when I left to go back to work, I'm really not sure which and don't think I want to know. Believe it or not, we are going to try again tomorrow. He has speech therapy scheduled for 1PM, and everyone seems to agree that it's at Kaiser Harbor City, which is the big facility where he was hospitalized for a while. The transit service is scheduled, I cleared my work calendar so that I can be there, and we'll just see what happens THIS time. I could have re-booked today's missed OT appointment for Thursday, but he also has physical therapy scheduled for Friday and I think 3 days in a row of appointments might be overwhelming - I don't want to push my luck as far as getting him to go. Tomorrow IS another day...ready or not! xxxoo -Janine (Founder and President of the Kaiser Fan Club!)

As for this day: Let me just say that I couldn't make this one up if I tried... Larry's occupational therapy was scheduled for 2PM, and he could not have been more cooperative. Cecilia (his caregiver while I am at work) and I had it all planned out perfectly. The transit service picked them up right on time, and got them there at 2:00 on the dot. Cecilia had the exact change for the shuttle, as required, and also had the Access Paratransit ID card, Kaiser ID card, notebook, and all the other stuff that she needed to bring, since we had gotten it all ready the night before, just to be sure we didn't forget anything. I left my office to meet them and also got there right at 2:00; we ran into each other going in. Perfect timing! Larry was in a good mood, especially because he had on his favorite gardening hat, which has seen better days and has a burn on it from when we accidentally left it on top of the outdoor fireplace, but no matter! He really likes to wear it now to any kind of medical appointments for some reason. I think it's his lucky hat that protects him from Western medicine, or something. So, I was in a haze of joy thinking that FINALLY Larry was going to get some therapy. I noticed that the assortment of people in the waiting room seemed a little odd, but Larry in his burnt gardening hat and bedroom slippers and Cecilia in her Winnie the Pooh nurse's smock didn't exactly look normal either, and who am I to judge, anyway? I went sailing up to the registration window, copayment clutched in my hand, confirmation number written down, name of the therapist memorized, and told the receptionist that we had arrived. That's when she let me know that the office we were in only does...psychiatry! (cue the sound of a balloon deflating) No occupational therapy, no speech therapy, no physical therapy. Psychiatry. Only. Which was convenient, because I felt at that point I felt like a nervous breakdown would have been totally appropriate, but unfortunately I didn't have an appointment and so that wasn't an option. Too bad, it would have at least made the trip worthwhile. It turns out that the office that does PT and ST is in the same city as the psych office (Lomita), but on another street. The Kaiser appointments person who gave me the address of the wrong facility apparently did not know that there are two offices in Lomita, and of course I didn't know that either, although I certainly know it now and am not likely ever to forget it. I called and talked to her supervisor and let him have it, but the damage was done and there's not much point in being angry about it. Finally, there was nothing to be done but to call the paratransit service and try to convince them to send a shuttle to pick up Larry and Cecilia earlier than 3:45, which was when they were originally scheduled to be taken home. They did send someone out earlier, but they still had to wait from 2PM until 3:15, for nothing. At least the room had working air conditioning, and so it wasn't as bad as a day at Country Villa Nursing Home Resort, I guess. Larry was a trooper through all of this and didn't complain about the mix-up. I think he enjoyed watching all of the interesting people...the black woman with platinum blonde dreadlocks who was talking to herself...the very friendly and talkative young man who could not stop pulling up his socks...the lady in the plaid skirt and floral blouse...she definitely had her eye on Larry's hat, which would have totally completed her ensemble. I think Larry was also OK with the fact that he avoided therapy again, and that this time nobody could be upset with him about it. He was either liking the air conditioning or gloating when I left to go back to work, I'm really not sure which and don't think I want to know. Believe it or not, we are going to try again tomorrow. He has speech therapy scheduled for 1PM, and everyone seems to agree that it's at Kaiser Harbor City, which is the big facility where he was hospitalized for a while. The transit service is scheduled, I cleared my work calendar so that I can be there, and we'll just see what happens THIS time. I could have re-booked today's missed OT appointment for Thursday, but he also has physical therapy scheduled for Friday and I think 3 days in a row of appointments might be overwhelming - I don't want to push my luck as far as getting him to go. Tomorrow IS another day...ready or not! xxxoo -Janine (Founder and President of the Kaiser Fan Club!)

Mary and Sue - thank you so much for your kind and helpful advice. Yes, Larry is on 2 anti-depressants. Wellbutrin is one, and I can't remember the name of the other without getting up to go look, and I am just too tired to move, so please excuse me! I don't know if they are helping or not. How do you know with someone who is non-verbal? He does seem happy some of the time, but I have no benchmark so I don't know how he would be without the meds. Anyway, I don't think it is hurting him so I'm leaving it alone. Larry's son came by Friday and talked with him about all the appointment issues. He pulled out all the stops: "Don't you want to live to see your grandchildren growing up? Don't you know how unfair this is to Janine? Don't you love your own children enough to want to be here for them?" And the most powerful weapon of all - he cried, and he's a pretty tough guy. If drama and guilt will help, then I think he got a good dose. Larry's brother came by Sunday, but didn't lay into him like Eric did. That's OK, they don't really have that kind of relationship. I think some of it may have sunk in, because Larry has been as loving as can be with me. I came home from work tonight and he was sitting in the wheelchair in the back yard waiting for me, and had pulled up a patio chair for me to sit in (not easy for him to do). When I came over to say hello, he took my hand and kissed it, and gave me such a sweet look that I almost burst into tears. After all these years, and even after the stroke, this man still makes my heart go pitty-pat! There are not many decisions that I can look back at with total conviction that I was right, but marrying him is one, even if the "for worse" part is pretty bad right now. I'm a lucky woman, believe it or not! I don't know how to make consequences a reality for Larry, but there seems to be a lot of wisdom in that idea. If he won't go to therapy, then what do I do? This seems to be a lot like training a cat...if he doesn't want to do something, then what? I had a cat once who clawed the couch, and I decided that the consequence would be that every time he did that I would put him outside. As you can imagine, he learned in about a day exactly what he needed to do if he wanted to go outside. I think Larry is kind of the same way - he hates being told what to do and being fussed over, so if he wants to be left alone all he has to do is not go with the program, and presto! Although I don't actually believe it's that willful, I think it's more like what Jean said and that he's not grasping the big picture of actions/consequences yet. I'm going to have to find a way to get tough with Larry on some of these things, but in such a way that he understands why and that he knows that the consequences mean something. I'm not sure yet how that will work. He has an OT appointment tomorrow (2PM, not in the morning!), and we'll see how that goes. I talked to him tonight and told him he has an appointment for a checkup tomorrow. I was vague on purpose and didn't use the word "therapy", since I think that puts him off. I'm hoping he will go - maybe all of this has had some effect. If not, then I need to keep working on "Plan B", whatever that is! xxx's and ooo's -Janine

Jean, Kaiser does provide a visiting nurse who comes to change the catheter; she has been here once, a couple of weeks ago. She left a couple of extra bags, and showed me how to change them, so when we sprung a leak a couple of nights ago I was able to change it with no problems. So, that is something! I don't know if there's a speech pathology dept. at Larry's school, but they have a well-regarded nursing program, and those things sort of seem to go together. I'll check, that is a great suggestion. His department chair has a speech impediment herself and is a good friend, so I'll bet she can point us in the right direction. Thanks for the idea. -Janine

I have about had it with Larry, and with Kaiser, and with just about everything else right now. I have that feeling that if ONE MORE THING happens I'm not going to be able to handle it...and then what? It's not like I can quit or take a vacation or something. After long and frustrating conversations with Kaiser, I finally got Larry a speech therapy appointment for yesterday. He has had no speech therapy since his discharge from the nursing home in early June, and has made zero progress on his own or with me trying to coach him. Kaiser has no in-home speech therapist on staff, and hasn't had one for 3 years, because they "can't find one" (!). Needless to say, the appointments for outpatient ST evaluation are hard to come by, but I finally got one and had it all set up for yesterday. I also arranged the paratransit service to pick up Larry and his caregiver and bring them home afterwards, and my plan was to meet them both at the ST's office and be there for the evaluation. I left one important thing out of the equation, and that was Larry. I went off to work, and Cecilia called to tell me that he would not let her get him out of bed or dressed and that he was refusing to go to the appointment. There is not much you can do when he is determined not to do something, and you certainly can't force him to dress or get into the chair, so I had no choice but to cancel the appointment. Today was the appointment date for the intensive bladder tests that are supposed to determine why Larry has urinary retention and needs the Foley catheter. It took 6 weeks to get this appointment - there is only one Kaiser doctor in the whole So. Calif. area that does the test, and so once again it is hard to schedule. I talked to Larry about it last night and reminded him that we had the appointment this morning, and he understood and didn't give any indication that he didn't want to go. This morning I stayed home just to make sure he got up and was ready to go (I didn't want to leave it in Cecilia's hands just in case). Sure enough: When I tried to get him up at 8AM he refused and got very angry. He pushed me away so hard that I have a bruise on my arm. I tried reasoning with him, pleading, getting angry back - nothing worked. So, no choice again but to cancel everything. I called Kaiser to tell them that I needed to re-schedule the bladder testing and was told that they have no appointments until September. The Foley catheter has been in since May, so it is already a long time, and I'm worried about infection. In talking with the urology nurse I learned that the test requires the patient to stand with assistance, to move from one table to another, and to communicate to the doctor what he's feeling. Larry can't do any of those things right now, so it turns out that his refusal to go may have been for the best, since it would have all been for nothing anyway. I'm really angry that once again nobody at Kaiser apparently read the chart and realized that Larry's physical limitations make him unable to even take this test! I don't understand what goes on over there - I end up having to tell the doctors what's going on, they generally seem to be totally in the dark about Larry's condition and clearly have no time to look at the chart or understand the patient's condition. At this point I have a message in to the head of urology to ask where we go from here. Maybe they can do the testing in a hopsital setting (I was already told they can't do it outpatient because all the equipment is in the urology clinic). Maybe there's an alternative test. How long can the Foley safely stay in place? Will the bladder become so dependent on the catheter that it no longer can function on its own? It can't be good to have it in there this long. I wonder what the odds are that the doctor will even return my call. And what to do about Larry's sudden refusal to go to appointments? I took him to his primary doctor on 7/14 and he was fine. I know that he doesn't like to get up in the morning, and that may be part of what happened today, but the ST appointment was in the afternoon. I don't know what to make of all this, because the one thing that's a fact is that if Larry does not want to go I can't make him, and he knows it. I feel like it's already starting to turn into a power struggle, and it's one that both of us will lose - Larry more than I, because he's the one who will end up not getting his therapy. Maybe I am too close to the situation to see my part in all this. I've tried to take Jean's advice and step out of my wife role when these things happen, but no matter what I do it does not seem to help. I think that Larry just doesn't care about getting better, and doesn't want to be "bothered" with the doctors and the therapy or any of this...which is terrifying, because if he regresses to the point that I can't care for him at home anymore that means back to a nursing home. Even that does not seem to faze Larry; all he does is shrug and roll his eyes if I say anything about that possibility. I'm really at my wits' end, and I'm also getting pretty angry. It's hard not to be upset with Larry when he does this, even though I know that I can't hold him accountable in the same way that I would have before the stroke. On a very fundamental level he is not the same person that he was before, and sometimes the things he does don't make any sense. I want him to hold up his end of the recovery bargain, but in fact there is no bargain, because recovery is not on his agenda at this point, only on mine. How much energy to I continue to pour into this if he's not committed to it? At what point does it become like teaching a pig to sing? I want to help him and do what's best for him - but how can I do that when he's not participating? Should I be patient? Keep nagging him? Stop nagging him? Try to figure out a way to be tougher on him (and how do you do that, I wonder?). Meanwhile, his family has become a lot more distant. His daughter hasn't been around at all, and his son only checks in occasionally. I would expect that after a certain amount of time, since both have young families and other responsibilities, but I'm feeling pretty alone here and not at all sure about what to do next. Not a very cheerful post, is it?? -Janine