| Author | Message | ||
     Debby Citizen Username: Debby Post Number: 2140 Registered: 5-2001 |
What really sent me over the edge was that after all the explaining, and clarifying, and reassuring, when I explained that he had lost 17 pounds in a month with the feeding tube in, She said, "Why? Weren't they giving him enough?" And I very calmly said, they were giving him what he needed...but his body systems are breaking down and they just aren't working any more, he isn't able to digest properly because the system isn't working any more, because he is dying..." She cut me off with "I have to go now. Everyone's talking and I can't hear a thing! Give my regards." That sent me flying. | ||
| las Citizen Username: Las Post Number: 717 Registered: 10-2003 |
Debby, I'd love to chat but everyone's talking and I can't hear a thing! Regards. (And lots of loving hugs from New Jersey...) | ||
| Joan Supporter Username: Joancrystal Post Number: 6750 Registered: 5-2001 |
Debby: Different people deal with the dying of someone they love very deeply in different ways. The way you describe your sister's behavior sounds like a classic case of denial accompanied by avoidance behavior. She could be hurting very deeply over your father's serious illness and unable to come to grips with the idea that he may be dying soon. This kind of behavior doesn't make things any easier for you or your mother but understanding its source may help somewhat. | ||
| Debby Citizen Username: Debby Post Number: 2141 Registered: 5-2001 |
HI Joan - You're absolutely right, of course. I realized it as I was typing the post about the phone call...as soon as I said it in absolute, inescapable terms, "Aunt Iris, his sytems are breaking down because he is dying" she checked out. She actually said, "I can't hear a word you're saying!" It was like a little kid covering their ears if someone is saying something they don't like. It seems though, that my Mom got through to her yesterday. (Mom used to be a kindergarten teacher  ) | ||
| Debby Citizen Username: Debby Post Number: 2142 Registered: 5-2001 |
las - thanks for the hugs bets - I think you said it best of all, about being on board - reluctantly, but with love and compassion for Dad The thing is, what's hard for me, is that we've had many, many discussions about this over the years - when my grandparents were at the end of their lives, about Terri Schiavo and other news stories. My parents have both, every time, said that they would not want anything extraordinary done to save their lives. That quality of life is more important. So from that perspective it should be clear, no? But now Dad can't be part of this discussion, because he doesn't have the short term memory or conversational skills or even the awareness of his own condition or where he is or even that he is sick! - to really understand the process, and the most we would accomplish is scaring theshit out of him and upsetting him (which he probably wouldn't remember the next time he fell asleep and woke up again but that's not really the point). So even though we've talked about it a hundred times, we haven't talked about it now. And that's killing me. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2084 Registered: 9-2003  |
Debby, my heart goes out to you. I think you're right: theory is one thing, reality in your face is another on all of this. On various occasions I've watched religious and/or concerned relatives -- the ones you expect to be really understanding and helpful -- go MIA in the clinch. They have their reasons, psychological, guilt, what you will. But, it's not your job to understand/forgive them. Personally, I'd give the aunt the hospice or doc number so she can get her questions answered directly. I think Joan is right in that these other folks have their own resons for why they're being insensitive/jerks/whatever but it doesn't mean that you have to be in the line of fire answering for the reality of what is going on (which can start to look like defending your/your mother's decisions). If your aunt is so concerned, invite her kindly to call the professionals or get her butt stateside. You could do it in written form to insure that she has the details. You do not need to be a balm to her hurt. She's a big girl. Being the info conduit is it's own special hell. I feel for you. | ||
| algebra2 Supporter Username: Algebra2 Post Number: 3920 Registered: 5-2001  |
Debby -- We are so sad to hear about all this. Your dad was always so nice when we chatted - and I still giggle about him always putting "the club" on his car. Our thoughts are with you. | ||
| greenetree Supporter Username: Greenetree Post Number: 6267 Registered: 5-2001  |
Debby - two of my brothers are like that. When things were pretty bad, they would call me and feel me out. During the worst, Baby Bro wouldn't talk about her at all - just chit chat about other stuff. Poptart Guy would ask how she was doing and then abruptly say "Ok. Bye". Click. Cyn's right - you don't have to be the balm. I did find it a little easier to try not to be angry with them for their inability to deal; it just made me more nuts. I agree with everyone about the difference between theory and reality. You can't prepare, no matter what. | ||
| Wendyn Supporter Username: Wendyn Post Number: 2502 Registered: 9-2002  |
And in more cancer news, my mom's brother only has a couple of weeks left. He's been battling colon cancer for over a year. He's a great guy. So mom of course wants to go visit him, he lives about an hour from her. But because of her early stage ALZ she has been avoiding anything but local driving (thank god). My sister can take her, but not until Thursday. Mom really wants to go today or tomorrow and keeps saying "I think I can visualize how to get there" and looking at a map. The woman gets lost and has panic attacks when she is not stressed, so I'm pretty confident it would be a disaster for her to try to drive. So I suggest taking a car/cab. She won't even entertain the suggestion. I know she really doesn't want to drive. But it is so frustrating that she would rather inconvenience my sister (who has to take 1/2 day off to drive her) than just take a friggin' cab. So my question is, how do you convince an independent woman that it is MORE independant to make your own arrangements, even if it means you aren't driving yourself, than to rely on other people? | ||
| Debby Citizen Username: Debby Post Number: 2143 Registered: 5-2001 |
Oh Wendy, what a situation! Are you sure it's about independence and not about money? A lot of older people, even if they have the resources, consider paying for a taxi totally wasteful. Can you arrange for a car service by phone with your credit card? Do it and then tell her. Don't ask if she'd like you to. Say something like you want her to be able to focus on the visit - not getting back and forth. Very sorry about your uncle. | ||
| Wendyn Supporter Username: Wendyn Post Number: 2504 Registered: 9-2002 |
She claims it is a money thing, but then every time she comes to visit me she wants to take a cab to/from the airport. You know, the airport that is 10 min from our house. And she has plenty of money, so that isn't the real reason. The real reason is that by using a car service she is admitting that she is not competant to drive. By relying on my sister she can say that my sister was going anyway (which she would be, just on her own schedule) so she is basically just going with her. I was thinking of ordering the car but I think that would offend my mom. Maybe I'll call her later and just tell her that I want her to go today or tomorrow and what you said, I want her to focus on the visit. Good idea Debby, thanks. | ||
| redY67 Citizen Username: Redy67 Post Number: 4646 Registered: 2-2003  |
Wendyn, I am so sorry, tough situation to deal with. My thoughts are with you. | ||
| greenetree Supporter Username: Greenetree Post Number: 6272 Registered: 5-2001 |
Wendy - I am all for letting elderly or ill people have their dignity and make their own decisions. But, this is a case where it's about safety. So, I support you. Even if she gets mad, I think it is a smart idea to say whatever you have to in order to get her into a car service. I don't know where your mom lives, but Boston Coach (while expensive) is global and incredibly reliable. Here's their website: https://www.bostoncoach.com/control/main I'm very sorry to hear about your uncle. | ||
| greenetree Supporter Username: Greenetree Post Number: 6280 Registered: 5-2001 |
Oh, speaking of miracles...... Greenemom went out on a sales appointment today. First one in a year.  This is good news. Not for the reasons you might think. She's been driving me bonkers calling me at work every 30 minutes to discuss Xmas presents. I have a few hours of peace this way. Nah. I'm happy that she's back to work, too. But the phone being quiet is still pretty cool..... | ||
| Brett Citizen Username: Bmalibashksa Post Number: 2075 Registered: 7-2003 |
Wendyn: My uncle is in the same position with driving. We found a local car service and had everyone send money for a Christmas gift. He ended up with 50 hours of driving. We joked that he could take the cars out on dates and impress the ladies. He liked it so much, he now never drives, he calls his driver and the driver schedules a trip at a slightly lower price. | ||
| Debby Citizen Username: Debby Post Number: 2144 Registered: 5-2001 |
Dad had a very good day yesterday, and felt pretty good and was generally alert. Which is wonderful, but it was unnerving for my Mom who started whatiffing (e.g., what if there's something else we can do? what if the feeding tube could save him?) Not easy. | ||
| Joan Supporter Username: Joancrystal Post Number: 6756 Registered: 5-2001 |
Wendyn: Could it be that your mom doesn't want to face seeing her brother alone and would like to have your sister drive her so your sister will be there for moral support both on the ride over there and during the visit with her brother? Even the most independent of us need to depend on others from time to time. | ||
| Debby Citizen Username: Debby Post Number: 2145 Registered: 5-2001 |
Alg - I must've skimmed over you before. Thanks for the sentiments. I always think of you and my Dad whenever I see "The Club" in a store (of course, being my Dad, it wasn't the genuine, brand-name "Club", but a $20 knockoff ) | ||
| greenetree Supporter Username: Greenetree Post Number: 6300 Registered: 5-2001 |
Debby - how are things? Did you get your plane ticket? Anything anyone can do for you when you get here? Wendy - did your mom go see your uncle? Did it all work out? | ||
| Wendyn Supporter Username: Wendyn Post Number: 2528 Registered: 9-2002 |
Ah, I've been so busy apparently bashing Christians on the education thread I didn't post here. My aunt actually said she'd rather my mom & sister not come out there on Thursday, because she will have a house full of people with her kids and their families. I think my aunt was so stressed out about all of the people she didn't realize that it basically means mom might not get to say goodbye to her only brother. So when I asked mom to just take a car over yesterday or today, she said no because my aunt doesn't want her there. The worst part is that mom has not been making an effort to see him, outside of family holiday/bday get togethers, since he got sick. Mainly because she would get really upset every time she saw him losing more weight or whatever. I don't blame her as everyone handles this kind of situation differently, and with the ALZ diagnosis she was being a hermit for a while. But she feels really guilty about it. And now she might not be able to say goodbye. So I told her a story about my kids to make her laugh and forget for at least a few minutes. And I'm hoping that she is able to get over there and see him before he passes. | ||
| redY67 Citizen Username: Redy67 Post Number: 4656 Registered: 2-2003 |
Wendy, I am so sorry. I hope your mom gets to say goodbye. Do you think someone might call your Aunt and explain to her? | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2087 Registered: 9-2003 |
Wendyn, is it possible for her to talk to him on the phone, to get her feet wet so to speak? Perhaps that would help, or be a sort of intermediate tact. The appearance thing can be rough. I slowly watched my husband dwindle, not just in size but in manner and everything else. A lot of the time you acclimate to it, but sometimes it strikes you so forcibly it's really, really hard. I saw this when Curt's sister visited around the holidays. She'd not seen him in a couple of years, and was used to him looking a lot like her, and chubby. When they came to visit, before we hit our house, I alerted her to the fact that he was very skinny, and weak looking. And he was on the mend! I saw in her face the shock, though she masked it fairly well. At one point, though, he lay down on the couch, tired. There were some votive candles on the coffee table in front of him. She asked me to move them, and then I could see why. He looked like he was laid out, and dead (crude, but true). I saw what she saw, and given they are roughly of an age, etc., I knew it was too much. Yep, everyone is different on this. Guilt isn't helpful to anyone, but maybe if she can speak with him by phone??? | ||
| greenetree Supporter Username: Greenetree Post Number: 6315 Registered: 5-2001 |
Mom gets her brain CAT tomorrow. She wants them to call me with results. But I know that, no matter what, she'll obsess about it. It will be hard not to let it hang over Xmas. No matter what, I will not tell anyone any negative news -should there be any and I don't think that there will be - until after New Years. But, it kind of sucks having the IT reassert itself during our vacation from Camp Cancer. | ||
| Debby Citizen Username: Debby Post Number: 2148 Registered: 5-2001 |
Hey Greene - how long do you have to wait for the results? Are you doing okay today? I'm flying up tomorrow. I really can't think of anything I need, but thank you so, so much for asking. Good luck keeping your mind of the CAT. Try this www.websudoku.com | ||
| Pippi Supporter Username: Pippi Post Number: 1533 Registered: 8-2003  |
Debby - you are either a good friend or evil That thing will keep your mind off EVERYTHING!!  | ||
| greenetree Supporter Username: Greenetree Post Number: 6326 Registered: 5-2001 |
OK - I have resisted this link before, but something about Pip's reaction made me go there. I hate you both. I do little enough at work as it is. If I lose my job, you two are splitting my mortgage payment. Two questions: 1. How do you get it to return to playing after hitting the "how am I doing" button? 2. How is it possible to fill an entire row and only have one mistake in it? I'm fine. I don't expect anything so I am not stressing. Mom is. I am actually thinking about lying to her if it is negative news. Not just no news, but telling her that it's all clear. She won't believe there is no news and will think the worst. Normal Bro & I are torn on this. We both generally believe that no good comes of lying and he pointed out that she'll never believe me again. But, her one and only Xmas with all of her grandkids could be worth it. I dunno. I think I'll just stress out about the fact that I literally have one pair of jeans and 3 work outfits that I can get into because I've gained so much friggin' weight. Wish I could donate it to Curt. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2813 Registered: 9-2003 |
Just tell her that in order to celebrate the season with a clear concience, you will not tell her the results until after Christmas. Maintain that you are not expecting bad news - but that in order for you not to have to lie to her, she'll get no news. Then, if it's good news, stick a note in her stocking. | ||
| greenetree Supporter Username: Greenetree Post Number: 6329 Registered: 5-2001 |
It's irrelevent. He called her this morning. Not good news. I'm on hold to get him now. I haven't talked to mom yet. | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2815 Registered: 9-2003 |
Aw Greenetree - my heart just sank into my toes.. that so much more than sucks. | ||
| greenetree Supporter Username: Greenetree Post Number: 6335 Registered: 5-2001 |
SOL - yeah. I have so much swimming around in my head. I don't know if it's better, worse or different. I keep flashing back to February 25th. I was so much more scared. Now I am old and wizened. I know the drill. Kind of. I fear that I may not have the strength to do it again. The things I'd forgotten about that are back: my cell phone is once again attached to me & will be, night and day. Mom calls every 20 minutes or so, just to chat. She is laughing a little too loud and long at my snide remarks. You have to be nice to me. I have brain cancer. No I don't. Besides, if I'm mean, you won't remember. And on like that. She is making lists of things she's not going to get. Here it is so far: a dog a dog a dog a dog Her friend and I have both assured her that we will keep our promise to look for a puppy when she is thru treatment. So, at some point, I will have a dog. We are lucky in the sense that this was caught incidentally. Had she not gone to enroll in a clinical trial, she would not have gotten this baseline scan. There is a 90% chance that the lesions can be fully shrunk. Do not confuse this with remission or cure. But, it can buy time and quality of life. And we are going to Chicago for Xmas and we are not going to start treatment until after. I made her promise me that, no matter what, she is getting on the plane. What if your grandmother goes to the hospital on Tuesday night? I can't get on a plane. Yes you can. Promise me, no matter what. I spoke with her new radiation oncologist today. Fortunately, I had spoken with him a few weeks ago about the trial and explained that we don't take kindly to doctors who don't listen. Today, I told him that I would not have told my mom until after Xmas. I let him know that he might not be used to her coping mechanisms, but that this is what has gotten her this far. He is not to call her with any more news without calling me first. He does listen, tho. When there was a problem with her prescription a few hours later, they called me. I straightened it out. She never knew. I've noticed that the last couple weeks her memory is bad and she told me that the cat has been licking her head. I considered the possibility, but pushed it somewhere deep in my mind because it was so unlikely that this was the cause. She's not supposed to drive, but the areas affected are not really likely to affect her ability. It's more her memory. I will sit and wait and watch and hold my breath because once again it is about independence and dignity. Hell. I feel as if I should just start posting links to the stuff I wrote back in March. It sounds all too damned familiar. Is there an uglier word in the English language that "metastasis"? Saddle up; we're moving back out onto the trail, doggies. | ||
| Joan Supporter Username: Joancrystal Post Number: 6776 Registered: 5-2001 |
Greenetree: I read an article not too long ago which described a study in which it was found that at least some dogs can sniff out cancer because the cancer causes a change in odor that the animal can detect. Can the same be true of some cats? If so, I would believe the story about the cat licking your Mom's head. I'm really sorry that the test indicated that the cancer was still there (or had returned?) At least it was caught early and hopefully it can be treated. Enjoy your holiday in Chicago and cherish the time you all have together. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2101 Registered: 9-2003 |
Man, greenetree. I read your post late Friday and travelled home feeling pretty darned blue on your behalf. Was on my way, hoping Curt and I might go out to dinner as the kiddo had a sleepover. But, he was feeling really crappy, chills and so on. Is it Fentanyl? Is it more cancer? Will we ever have a normal Friday night? Had a big meltdown, both of us, about how each of us was feeling. The Cancer beast in our midst, keeping us from any sense of ease, always ready to spring. Taking away any sense of hope. Yes, "metastasis" is the ugliest word, and lived with us all this year. Will always, really. The only peace I've made with it is the idea of constant vigilance, eternal rounds of It popping up and getting vanguished for the moment but never completely going away. I can never be fooled on that score, never allow myself that luxury. So, saddle up, belt up back into it. I don't know the typical way of brain cancer. If you shrink the lesions, is it anything like reasonable to think she could live for quite awhile, decently, but having to be vigilant and going back for more "shrinking?" I am heartened by what you said about finding it early. That sort of thing is the only thing that has gotten me through with Curt's. Finding it early. Getting it at bay, bringing it to heel. But so exhausting, that. | ||
| las Citizen Username: Las Post Number: 736 Registered: 10-2003 |
For an entire day I didn't know what to post here. I just keep thinking about all those deep relieving breaths we took for a short time when miraculously, people who should have died were generous enough not to. That was a neet feeling. This is surreal. | ||
| greenetree Supporter Username: Greenetree Post Number: 6338 Registered: 5-2001 |
I debated on whether to post anything at all. We've all been on such a Holiday High. I was prepared to lie to you all, too, until after Xmas. I probably should have. And I'm not fishing for anyone to say "oh no, we're here for you" or any such thing. Because this sucks, no matter what. But, at least this time, I had Ambien the first night. Now, to go take a shower and get dressed. May as well get to my "to do" list. | ||
| las Citizen Username: Las Post Number: 737 Registered: 10-2003 |
G, that would have been a huge burden for you to lug around in secret for so long. It is important for you to have told us the truth when you did - you pretend all the time (at work, with most of your family) this forum is about pain, honesty and sharing. For the record: I am not here for you. I've got a pair of socks to knit. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2103 Registered: 9-2003 |
Lying never works. I've not been that high anyway. I just haven't posted some of the in's and out's as I've been up to my asc in work alligators, trying to do Christmas prep and dealing with my recurrent headaches (gee, d'ya think it's stress?) Thank God you have Ambien. Personally, I found a lonely little Percoset last night and a good detective novel. Ditto on the to-do list. | ||
| Joan Supporter Username: Joancrystal Post Number: 6781 Registered: 5-2001 |
Greenetree: Thank you for sharing when you did. How would you have been able to find an outlet for all that pent up emotion if you didn't have us to share it with? | ||
| greenetree Supporter Username: Greenetree Post Number: 6340 Registered: 5-2001 |
I could have started a fight with TS? What I find most annoying is the whole crying without notice or reason thing. The cat broke an ornament awhile ago. It was a total emotional crisis. And it was just a fancy ball, fergodssake. Anyone want a cat? | ||
| SoOrLady Citizen Username: Soorlady Post Number: 2817 Registered: 9-2003 |
Yea - the crying from out of nowhere, a broken ornament, a photo, a piece of fruit..... it's so easy to contain all the emotions and be "on" when you have to... then from out of nowhere.. bam, you're a puddle. Well, I still have shopping to do, my tree to deck, MFIL's tree to deck, laundry, cleaning.... Fa La F#*kin' La. Glad you posted anyway... that way we can send thoughts for strength and get some good karma coming your and greenmom's way - makes us feel like we're helping. | ||
| Cynicalgirl Citizen Username: Cynicalgirl Post Number: 2104 Registered: 9-2003 |
The crying from nowhere is particularly tough on those of us who don't see ourselves as weak, greenetree, and I imagine you're one such. My monstrous big sympathy on that. We watched It's a Wonderful Life last night, as we are wont to do after decorating the tree. I kept imagining a whole other version, not quite accurate, with me in the George Bailey role (isn't that egotistical, and I'm not particularly beloved in quite that way). Really related though to his angry fit at wife and kids, and feelings of being responsible for everything and everybody. I NEED CLARENCE! Hope you're getting some peace.... |
