A place to talk death and dying issues
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Radagast, I found on Amazon, it was about $10. I totally get the denial, I showed DH and he said “I’m never gonna need that”. I feel good at the moment but my recovery from brain surgery has been really hard and I still have issues, all the months of starvation and weakness were a wake up call. As a super planner, I’m always thinking ahead but I decided, why not now?
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Over the years since being diagnosed, I've tackled some of the end of life issues and although it seems weird and unusual, I always feel relief to have things in place that dh and ds aren't going to have to deal with. It's a mature way to approach the situation. Not everyone has it in them to do that, so we should commend ourselves for taking the steps we can now. I don't worry about having every single base covered, but I do have a lot of the larger matters done. I see it as an act of love. (Here, dh and ds, I did this so you don't have to make important decisions or be caught in a bind in the middle of your grief.)
I know a few people who took care of these issues, but more people I know who've passed didn't. I've had some important conversations with dh (“I don't want my sisters going through my things when I'm gone.") but they aren't prolonged discussions, simply: “look, here's what I want" to give him general guidelines.
Illimae, aww, I loved your mentioning Lita. Yes, she would have loved that book. I know your dh will appreciate it when the time comes.
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I think of Lita, too. OMG,remember the Walking Dead depends that she wore?0
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RadagastRabbit, my dh is old school too and hasn't been a big help through the years either with cooking or cleaning. But he helps a little now when I just can't. I never nag, but I am not afraid to say I don't feel up to making lunch or dinner or I need help or that this stresses me. It has been a very slow progress. My dd lives with us so she does the big things although she is in nursing school and is not always available, and does things in her own time. I like to keep the dishes up, but she wants to do them once at night--.I have had to let that go! We are fortunate enough that we can afford a house cleaner every two weeks for the heavy cleaning. My dh loves through giving (like paying for a house cleaner) not by being a servant, but he is slowly coming around.
I keep procrastinating about creating an end-of-life book but I do keep a journal although after four years now it is getting long! Oh, and I still smile when thinking of Lita!
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I don't have the issue with DH doing housework because of my mobility problems. He shops, cooks, cleans, does laundry, dishes plus house and car maintenance. Yup, he is a keeper. My issue is with letting them be in denial. Us being in denial is not an issue for me. I'm way past that as are most of the posters on this thread. People who are in denial don't usually come to this thread. There are many stage IV people who are in denial. I see them every day in other threads. But I digress. My question is how kind, generous, giving is allowing our husbands to be in denial? I guess it is better for them now while we are here to enjoy being in denial. Their QOL. (How it affects our QOL needs to be considered, too, but not right now.) But will living in denial for years help or hurt them when we are gone? I'd say a little bit of reality now might help them cope later on. But I do the same thing. Allow, actually enable his denial. The really hard talks don't happen. How do you get there? Should you get there? Will getting there help them to cope? SandiBeach's deleted post (which I saw before she deleted it) inspired all this thinking. (She deleted it because she thought "it made her sound like a jerk." Imagine! SandiBeach sounding like a jerk. IMPOSSIBLE.) So the DH in denial issue started to bother me. And I thought about it too much. So what do you do? Say, "we need to talk. You know I am going to die, right?" They do but they don't. Maybe it is time they did, a little more. But I avoid it. Maybe when I get sicker? Obviously, the thinking it not finished.
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Jaycee, I think how we get there is different for each relationship, be it spouse, friends, other family. I certainly know that cancer will take me, unless I get hit by that bus first but I live with all the possibilities too, like future treatment options. DH also knows but hates to talk about. Most friends are probably surprised I’m still here but since I’ve been mostly normal for a few years, maybe they’ve just forgotten. My parents are absolutely in denial but since I rarely speak to them, I don’t really care and I refuse to make the effort required to get through to them, it’s just not worth it.
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Mae, thanks for replying. Many times my crazy posts end up being thread killers. As things in MBC have evolved to this weird situation where there is always something lurking right around the corner, dangling like a carrot, I find that to be a double edged sword. I'm grateful that positive possibility is out there but it makes people see you differently. Like you, I have been "healthy-looking" for a few years and many people think I am "cured" or (my favorite) "in remission." Explaining the real situation takes too much mental and emotional energy. DH asked about the grant(s) I have to pay for Ibrance and I snapped at him because I have described it so many time before. He gets all insulted because "at least he asked." He has no idea what a marathon it is to keep that money going. And stressful.
It's hard when lay people keep seeing news about all the progress that has been made in cancer research and we wait. And wait. That's all we do. Wait. It's like waiting for a bus that never comes. After a while, you just feel stupid. I'm not waiting any more. I'm just living. And complaining about all the niggling health issues of OLD AGE.
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illimae, I think my DH is like yours..knows this disease will take my life, but doesn't want to talk about it. He says he thinks about it all the time and doesn't want to mourn while I am alive. And maybe I talk about it too much, a reality check on myself. Plus, I am a list maker, planner, organizer and he is definitely not.
The post that I deleted was mainly venting my frustration. I want to sit down and show my DH how to do taxes..he kept taking breaks. We ended up in a truce and he said he would hire an accountant when the time came..I tried to show him where to find my budget sheets so he could take over. I realized he just can't do it. So I made a list with all important things he needs to know and placed in our firebox. It was a compromise.
My palliative care NP said that the end of life "acceptance" language should be replaced with "awareness". So maybe this is where my DH is in his mind..aware.
Thanks Jaycee49 for your words. You always straighten out my mind..0 -
Jaycee, you and I were diagnosed in the same year and it would appear that we are in similar places mentally with MBC. Early on, I got excited about trials that cure cancer in mice but I haven’t seen much of that evolve yet, so I’m now cautiously optimistic and live by how I feel physically. You are absolutely correct about the marathon, it can be exhausting.
I’m mostly quiet on this thread because I’m not at a point where I’m actively making death related decisions but this place is so valuable to me for gaining some insight into what the future may hold and what practical concerns need to be addressed.
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Sandibeach, I think you posted while I was typing my response but I totally get it. My DH has so many skills but finance sis not one of them, nor is ready contracts, just doesn’t have the patience or familiarity for it. The biggest issues I see for him is losing things (I have found 3 items he misplaced just today, lol) and him becoming a bitter hermit when I’m gone.
I like the “awareness” idea, more realistic.
Also, I think we should feel free to vent here, just my opinion.
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My husband is in denial too. He thinks I'll live 20 more years. I think it will hit him more when I need to go start iv chemos. I haven't been able to turn anything over to him to take care of.
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Mae, right 2016. You were 41, I was 67. Big difference.
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Edited to add: I recently following a palliative care doctor in California. I thought her bedside manner was excellent. I wish she was near me. Ps, the video below shows end of life discussions with terminal patients, so it may not be for everyone. I just thought the doctor was fabulous with these patients.
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Oh, wow! I just watched this video. Thank you for sharing it. I want to go out with joy, just like the first gentleman. What a sweet spirit he had.
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Sunshine, your welcome. My goal is to get to the place where I approach death like the old gentleman, I shared it because of his approach and the doctors approach, that its okay to let go at some point or to have a cut off point.
Intolight, thank you! I think its finding that balance. I think I have to let go of things being done how I'd like them to be, when I like them to be. And just accept help as it comes when it comes and how they are able to do it. I woke up this morning in utter shock. My husband had cleaned almost the entire house. Laundry was preloaded in the washer for me, blankets folded, things put away, even our shoes lined up. Tears just welled in my eyes. Maybe he gets it more than I realize...
Jaycee, I think the thread killer award belongs to me
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Hi All,
I just wanted to chime in to say how much I appreciate this thread. While I am doing very well and hope for a good long run on various treatments, I'm also a realist and am grateful there is someplace that we can discuss the disease without the sugar coating. I'm certainly prepared to keep going as long as I can but told my oncologist early on that I was not prepared to "chase a cure". I believe in modern medicine and have faith that my MO is providing the best possible options. We have discussed potential therapies - his criteria for supporting them is that it shouldn't cost me a fortune and shouldn't harm me. I can work with that. Don't know if I am at the place of the old gentleman (thank you for sharing the link Rabbit) but I am a planner which comes with a certain level of acceptance.
It's interesting reading the discussion on levels of denial. I don't have a spouse or children so it's not something I grapple with. I do live with my 89 year old mother however so face a certain amount. A times we face challenges in our relationship as she is also dealing with increasing health issues due to her advancing years. Sometimes I feel like there is a weird dynamic - who hurts worse today?
I am learning to bite my tongue more in terms of the future though. Folks just don't get it. Yesterday I joked to my neighbor, who knows my situation, about retired folks when he didn't realize yesterday was a holiday. He responded, oh, you'll get there someday. Um.. will I? I'm 58 and almost four years in. Hmmm.... we'll see.
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Sadieservant, I had to laugh about your neighbor. I was on the phone with a Medicare rep discussing terminal cancer/treatment and she asked me when I’ll turn 65. I said ummm, never. I’m only 45 now.
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Ha! You just have to laugh.
When I was first rediagnosed I went on sick leave as I was convinced that I had about two years (based on Doctor Google... don't go there!). When I realized that things weren't quite that dire I started to get things in motion to go back to work. First, folks thought I was nuts but as I explained, it's not like I'm at Club Med. Sitting at home in February with nothing to think about other than cancer was making me nuts! However, I work for government so there is a "process" and it's not as easy as just showing up for work even though I hadn't been off for very long. The back to work specialist that contacted me asked "Are you sure you don't want to wait until your treatment is over?" Uh... no... that would mean I'm dead... Don't think I will need the paycheck at that point.
Seriously? That's what this person does for a living!!!
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I am a little late checking in on the subject of denial, but here goes anyway. I sometimes worry that my DH is in denial, but when things looked dire in February/March, I saw him in a different light. He definitely knew what the situation was, and reacted accordingly. He has reverted back now that I am doing so much better, but I know look upon his attitude as one of hope rather than denial. He hopes I will live for many more years, but he knows what the reality of this disease is. I do worry about what my DH will be like once I am gone. We have been together since high school. My death will leave a huge hole in his life. We do have grown children, and the will all pull together for him, but human nature being what it is, that coming together will be temporary. They have their own families and lives and homes. I fear that my husband will be alone and lonely and I worry about that. He can handle the normal icing details of bill paying, banking, etc. it is the emotional side I worry about. He cooks a lot, but will he want to cook for just himself or will he live on cereal and sandwiches?
Mae, thank you for posting the info on that book. I love the title, and I can see why you thought of Lita.
Hugs and prayers from, lynne
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Mea, I decided to order the same end of life checklist. I had been working on planning for awhile, but really haven't put much effort into it because I've been doing well. I think th e checklist will help. I really need to put things in order, even if it's uncomfortable for me, my husband, and son.
It really hit home yesterday when Penny's husband posted on several threads that she had passed last month. She had been doing so good on I\L, I remember her posts letting people know when she had good scan and reporting she was still NEAD. She went so fast. It's a reminder how quickly things can turn for the worse in our world.
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50sgirl -
Hubby and I have also been together since high school. In this day and age, we are certainly a rarity. At 65 he would like to work a couple more years. I’m all for that because we have great insurance (which of course can change at plan renewal). When he retires, he would like to live on a small lake so he can fish to his hearts content. We’re in Wisconsin where our younger daughter and grandkids are 3 hours away. Should be easy to find that lake closer to them. But the news about Penny was like a kick in the gut. Cancer is so fricking sneaky. And while I don’t dwell on the terminal side of MBC, it’s hard not to be reminded of it. I love this board for the community connection and education; then there are times I despise it for the reminders.
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To All Of You: Penny was a shock and a reminder of the razor's edge on which we all dance.
When I was first diagnosed I was mostly in shock and paralyzed. Then I thought I had better get things in order in case things moved quickly. I completed my "Advance Planning Guide" (I haven't actually signed it yet -- that's another story) I found a crematorium where they can put the ashes in a mulberry paper casket so I could have the ashes tossed overboard in the Pacific. I found a boat charter company that takes "water burial" parties out past the point where that sort of things is allowed and wrote down their contacts. I indicated I wanted a piper to play (NOT "Amazing Grace") "Going Home". If a piper was not affordable I'll take a good recording. I found a recording on Youtube of a piper from someplace like Vermont. The best version ever. I balled my eyes out. I found a piece of writing that I wanted read before they tossed me over the side. I balled my eyes out while I typed it out. I am not a Christian so I want none of that. Anyway, all those things and more I put in a bright yellow accordian file that I keep in the shelf over my PC in my arts/crafts room. I also stuck a picture on the front so my DH would not have to riffle through stuff. This is the picture. I love crows and I have a family I have been friends with for several years. I know one is the same, he has one lone white feather on his right wing. He waits for me by the kitchen window, sitting on the porch railing.
I have been feeling well. I look well. So I spend a lot of time living in Denial. It is a better place to be than living in Fear. Then we lose one of our sisters and I am heartbroken about her and frightened for the rest of us.
I think my friends have almost forgotten my DX since I sound and look so good and I never talk about it. I don't know about my DH. He says he thinks and worries about it a lot but then he tells me not to worry so much I am going to go for years and years and outlive him. I met him in 1969 and we hung around together with our respective boyfriends and girlfriends. In the Fall of 1971 we moved in together, got married May 1973. There's denial there about losing his friend of 51 years. He wouldn't live on cereal and milk but he sure wouldn't make himself lamb shanks braised in vermouth. Haha Yeah, he'd miss my cooking but mostly miss me. I turned 70 in August so I have had a full life but I am not ready to go yet.
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To All: I hate typing the wrong word BAWLED not balled
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Does anyone else do Kindle Unlimited? You pay about $10 a month for unlimited books in the limited list of Kindle books they offer. I love it. It is totally worth the money to me. I read about 6-8 books a month. They just offered me a pretty substantial discount on the price if I pay upfront for 6, 12, or 24 months. Six months seems ok, maybe 12, but 24? I hate that cancer has put me in this position. I left the page up where I have to decide. I've almost decided on twelve. Still wavering.
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I had Kindle Unlimited for a while. So convenient. I say if you love it, go for 12 months. Why not be an optimist?
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Thanks. I did do 12.
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I tend towards the "you can't take it with you" philosophy, particularly on small expenditures but also don't have children or a significant other. (Someone else can figure out how to cancel all those services! LOL) But a year seems like an appropriate compromise.
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Jaycee 49- I’m glad you are betting on yourself
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Jaycee, I like your attitude, and I am glad you went with the 12 months. I would be booking a winter vacation for someplace warm we’re it not for COVID-19 . That would have been unthinkable for me last March.
I have been busy sewing quilts for my grandchildren. They will be Christmas gifts and something to remember me by. I did get to my gardening during the spring and summer. We ended up in a drought situation, so my flowers didn’t look as good as I had hoped. I guess I will have to work harder next spring to nurse my perennials back to health.I continue to feel good. My wbc and neutrophils have crash during the past two cycle of Adriamycin, (ANC was 600), so my cycles have been changed from 3 was on/1 wk off to 1 wk on/1 wk off. Good news - anemia has improved a lot and CA 27.29 dropped from 3817 in March to 196 last week. Woohoo! I am enjoying this bonus time and and appreciating every minute. I do wish COVID was not around so I could hug my children and grandchildren.
Hugs and prayers from, Lynne
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precious woman Those quilts will be cherished I am So sure of that! Just wanted to let you know I think you’re wonderful.
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