maison rustique Posted May 7 Share Posted May 7 I spent the bulk of my life not really being afraid of much. Well, spiders, but who isn't. I have a whole new set of fears now. I have become very fearful of the severe storms we've had passing through the mid-west on a regular basis now. I gather things and head to the basement, which I never used to do. Maybe it has to do with the heavy burdens I carry constantly. There is something new to worry about every day. I got a call from the assisted living nurse last night (just as the tornado warning were being issued) to say that my husband was in a rage, walking around everywhere, banging on doors with his cane and yelling. Has has been upset for the last week because he wants to come home. She put him on the phone and I couldn't calm him down. I told the nurse to take him back to his room and try to get him engaged in watching some TV. When we talked again after, I suggested they check him for UTI and get the doctor involved to see if his meds need to be adjusted. I know they will not keep him there if he continues to exhibit violent behavior. WTF am I supposed to do if they throw him out? Merely rhetorical. I know no one can really answer that. Don't get old. Quote Link to comment Share on other sites More sharing options...
Steve R. Posted May 7 Share Posted May 7 "Don't get old". Too late, I'm already there. Falling apart in many places, but thankful to be here getting older. Now for the unsolicited advice: there's a bit of middle ground you may want to explore (if you haven't already) if you're worried about them kicking him out for explosive behavior. Such as, if he is in an assisted living that indeed has a Nurse on duty (not just an aide), you can explore with the facility the ability to get a PRN prescription written that the Nurse can administer to calm him down when needed (behaviorally specific - it cant be written as a chemical restraint, but can be to assist with the symptoms of his illness - don't let them tell you otherwise, it just needs the correct purpose wording by the Doctor). And a signed plan with them that they will hold his bed if he needs to go to an ER/acute care for x number of days, instead of just discharging him if/when he's removed from the facility if/when agitated. They may already be responsible for doing this by state law, especially if their license is for more than an assisted living, but includes short term Nursing Home/Dementia care. And, of course, as difficult as it may be, proactively telling him about the above and that he won't be coming home but may well put himself into a more restrictive setting by acting out this way. I know -- easier for me to preach and god awful to put into motion. I wish you the best - I've been there, both professionally & personally (father, not spouse). 2 Quote Link to comment Share on other sites More sharing options...
Steve R. Posted May 7 Share Posted May 7 As for the fear part, well most of us experience this as we get older. We understand potential consequences more fully from experience than the youngstas, we are in less & less control over our bodies & we have more marginalized standing in our environment. Hey, I'm sometimes afraid to go play tennis where there's no nearby useable bathroom. Storms and spiders be damned, give me a port-a-potty (or, preferably, a private club). 😏 1 Quote Link to comment Share on other sites More sharing options...
maison rustique Posted May 8 Author Share Posted May 8 Update on the husband...the doctor saw him first thing yesterday morning. She has added lorazepam to be administered early afternoon to help with his sundowning. When I got there, he had all his stuff packed up and ready to go home. After lunch, they took everyone out to the patio because the weather was beautiful. I went in to go get one of his hats for him. (Both are MIA--sigh.) The Dir. of Nursing grabbed me and told me not to go back out--he said to just leave and let him forget about me taking him home. So, I did. We have a small severe hail storm this morning, but if it clears up, I'll probably go over a little later and hope he is doing better. 2 Quote Link to comment Share on other sites More sharing options...
maison rustique Posted May 8 Author Share Posted May 8 I forgot to say that today's fear is that my little sister who has had heart issues for years, is having an ablation this morning. I hope it helps. She has not been feeling well at all. She's my rock. I can't lose her. Quote Link to comment Share on other sites More sharing options...
backyardchef Posted May 8 Share Posted May 8 3 hours ago, maison rustique said: I forgot to say that today's fear is that my little sister who has had heart issues for years, is having an ablation this morning. I hope it helps. She has not been feeling well at all. She's my rock. I can't lose her. Good luck. I hope you make some time for yourself to decompress from all of this emotion that must be coursing through you. 2 Quote Link to comment Share on other sites More sharing options...
Sneakeater Posted May 8 Share Posted May 8 (edited) I have cancer. It isn't curable, and it may or may not be treatable (and any available treatment may or may not be worth the downsides). I'll have a lot of thinking to do. I'm surprisingly unafraid. The prospect of not living can be less scary than the prospect of living. It can almost be a relief. Edited May 8 by Sneakeater 1 Quote Link to comment Share on other sites More sharing options...
Sneakeater Posted May 8 Share Posted May 8 (I don't mean to seem to be playing "can you top this?". Sorry.) Quote Link to comment Share on other sites More sharing options...
Sneakeater Posted May 8 Share Posted May 8 Quote Link to comment Share on other sites More sharing options...
voyager Posted May 8 Share Posted May 8 Sneak, as you might know, husband has been living with this diagnosis for some 8 months. He has been receiving both chemotherapy and immunotherapy with close to no side effects except fatigue. His subsequent scans are all looking good. I have convinced him to put away his shroud and live in the present. Work with the best med team you can find and thrive!! Sending my most positive thoughts and encouragement. Quote Link to comment Share on other sites More sharing options...
relbbaddoof Posted May 9 Share Posted May 9 3 hours ago, Sneakeater said: I have cancer. It isn't curable, and it may or may not be treatable (and any available treatment may or may not be worth the downsides). I'll have a lot of thinking to do. I'm surprisingly unafraid. The prospect of not living can be less scary than the prospect of living. It can almost be a relief. I'm so sorry. As you know, I'm an admirer of your posts on many topics. I'll message you separately. Quote Link to comment Share on other sites More sharing options...
small h Posted May 9 Share Posted May 9 4 hours ago, Sneakeater said: I'm surprisingly unafraid. I volunteer to be afraid for you, as it is in my skill set and might be helpful. Also to do your Greenmarket shopping, if there comes a time you need someone to do this. 1 Quote Link to comment Share on other sites More sharing options...
Wilfrid Posted May 9 Share Posted May 9 @Sneakeater Nothing to say but we love you. 2 Quote Link to comment Share on other sites More sharing options...
hollywood Posted May 9 Share Posted May 9 I have a friend who has/had colon cancer. He was told he could go at any time. After a course of chemo and radiation he's been alive for 5 years and is looking good. 1 Quote Link to comment Share on other sites More sharing options...
Behemoth_Munich Posted May 9 Share Posted May 9 Sneak, nothing to say really except please stick around, as long as possible. I love reading your writing and also how would I know what music to listen to or which wines to try? 1 Quote Link to comment Share on other sites More sharing options...
maison rustique Posted May 9 Author Share Posted May 9 15 hours ago, Sneakeater said: I have cancer. It isn't curable, and it may or may not be treatable (and any available treatment may or may not be worth the downsides). I'll have a lot of thinking to do. I'm surprisingly unafraid. The prospect of not living can be less scary than the prospect of living. It can almost be a relief. I can't begin to say how sorry I am to hear this. I do believe in miracles (nothing to do with religion, but I think that Mother Nature loves to mess with us sometimes) and I hope one happens for you. You will be missed when/if that happens. Stay strong and stay with us! Quote Link to comment Share on other sites More sharing options...
maison rustique Posted May 9 Author Share Posted May 9 14 hours ago, voyager said: Sneak, as you might know, husband has been living with this diagnosis for some 8 months. He has been receiving both chemotherapy and immunotherapy with close to no side effects except fatigue. His subsequent scans are all looking good. I have convinced him to put away his shroud and live in the present. Work with the best med team you can find and thrive!! Sending my most positive thoughts and encouragement. @voyager, see my post to @Sneakeater above. Ditto for your husband. Quote Link to comment Share on other sites More sharing options...
maison rustique Posted May 9 Author Share Posted May 9 Husband update: He did not react well at all to the lorazepam and got even more violent. The Director called me late yesterday and said he'd discussed with the doctor and they took him off that and doubled his dose of Seroquel. We all have our fingers crossed. I am so fortunate to have found the facility that I did. They are very kind and caring for both the residents and their families. They were checking on him every 15 minutes and were going to continue to do that until they were sure he was OK. I will go see him today, though the Director told me to never feel like I need to go, as he doesn't remember I am there all the time and swears I never visit. Sister update: I don't think I said that she had her mitral valve repaired 20+ years ago. When they did that, they placed a ring of some sort (I probably knew details at one point, but not now). Apparently that ring made the ablation a bit more difficult, as they had to work around it. In attempting to do that, a wire poked a hole in her heart. It is fixed but she lost a bit of blood. Has been in ICU since and have not heard yet today how long she will be there. When she had her valve surgery, the drainage tube caused some issues and they are watching that closely, as well. At least our weather is nice for the moment! Quote Link to comment Share on other sites More sharing options...
mongo Posted May 9 Share Posted May 9 sneak, i am so sorry to hear your news. maison rustique: i hope your sister pulls through and that your husband's doctors find a med combo that works for now. 1 Quote Link to comment Share on other sites More sharing options...
small h Posted May 9 Share Posted May 9 22 minutes ago, maison rustique said: At least our weather is nice for the moment! Silver lining minus clouds? I'm so sorry for what you're going through. I hope things improve. 1 Quote Link to comment Share on other sites More sharing options...
backyardchef Posted May 9 Share Posted May 9 16 hours ago, Sneakeater said: I have cancer. It isn't curable, and it may or may not be treatable (and any available treatment may or may not be worth the downsides). I'll have a lot of thinking to do. I'm surprisingly unafraid. The prospect of not living can be less scary than the prospect of living. It can almost be a relief. Sneak-- You are one of the few people here that I have met in person-- perhaps more than once. I have no magic words that can make anything better, but know that I am here for you like the rest of the group, and I'm in your neighborhood if you need anything. My life has been touched by the scourge of Cancer so many times and it is never simple, easy or predictable. Be strong. Be forgiving. Be patient. Quote Link to comment Share on other sites More sharing options...
bloviatrix Posted May 9 Share Posted May 9 @Sneakeater - I'm sorry to hear about your diagnosis. I hope you find the very best team of specialists who can work with you to find a course of treatment that will keep things in check and allow you to continue to do the things you love. Quote Link to comment Share on other sites More sharing options...
voyager Posted May 9 Share Posted May 9 I would like to mitigate the terrifying word "cancer". It is imperative to understand that new treatment is being developed as we speak and that many of our past experiences and assumptions are no longer apropos. eg, chemo has not caused husband one moment of nausea, nor has he lost so much as one hair off his head. In fact, he was given a laundry list of possible side effects and not one of them has manifested itself. His was metastasized when found, a major tumor, lymph nodes and many small liver spots. After 3 rounds of chemo and immuno, the tumor had shrunk by 75%, lymph nodes returned to normal and liver spots entirely gone. In addition, the protein suppliers had been rendered inactive. A subsequent scan showed continued shrinkage if not so dramatic. An MRI showed several spots on his brain which were addressed successfully by gamma knife, an entirely painless procedure. His energy level is not what it was, but he still puts in an astonishing day's work in the country, essentially keeping nature at bay. Because his tumor is esophageal, he has to pay attention to eating moderate amounts and slowly, and to CHEW extraordinarily well. But you would never know that he was in anyway compromised. My hope for Sneak is that he make no assumptions or irrevokable decisions at this time. "Inoperable" and "incurable" are merely descriptive, not sentences. There are MANY options out there today. 1 Quote Link to comment Share on other sites More sharing options...
relbbaddoof Posted May 9 Share Posted May 9 I back what voyager says above. A family member was diagnosed with pancreatic cancer last fall. A few years ago that would have been an automatic death sentence, and a swift one at that. But they've developed powerful chemo techniques since, and between those and precisely targeted, robotic cyberknife radiation the tumor shrank to a point where last week they could remove it. But, even if there had not been sufficient shrinkage, they were optimistic that chemo could so ravage the tumor that it would spend its time trying to fix itself rather than spreading. We were told during treatment that the cancer center at Penn was the place to go to for experimental approaches if standard treatments failed: https://www.pennmedicine.org/cancer 1 Quote Link to comment Share on other sites More sharing options...
StephanieL Posted May 9 Share Posted May 9 N's father went under the knife to remove his cancerous kidney, and that appears to have taken care of the tumors so far. We're all crossing our fingers. N will finally get a chance to visit him later this summer, nearly 18 months since his diagnosis. Quote Link to comment Share on other sites More sharing options...
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