A place to talk death and dying issues
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people with chronic diseases can work. I cannot work with this chronic disease. They see the word chronic anywhere and those benefits will be gone. I’m terminal not chronic. Chronic to me sounds like cold or sinus infections. I too am doing well but I’m stage four terminal. By using chronic. It makes me feel like I’m making an excuse for having cancer. I have to explain why I can’t do certain things. Terminal cancer shuts that up quick. End of explanation. If we ourselves want to use chronic. That’s OUR choice. We don’t need to be told what we are. We know. Deep down weknow. As Lita used to say if it smells and looks like shit. It’s probably shit.
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micmel,
But here’s the thing, I have mbc and I work and have for all but 3 1/2 months of the past 9 1/2 years. I don’t use the word chronic but by your statement that makes me chronic! Personally I am less bothered by the nomenclature and just wish mbc was not treated as a monolith. We may all eventually end up in the same place but ours paths can be very different.
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you’re definitely an inspiration for sure! It’s a disease and that’s the bottom line. At the end of our lives , somehow we all are going to die. I actually would not mind being chronic. But the side effects from chemo are a constant reminder. More power to you.... and I wish you nothing but continued wellness ..
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thank you, micmel. If I’m an inspiration then I wish I knew how I got there. But you are right, we will all, most likely, die from mbc. Take care!
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Jaycee, I never write but wanted to say I usually admire not only what you write, but how--clear, crisp, and right to the point. Excellent letter, I hope the right people pay attention. I am one of the lucky ones too, since I now take Arimidex only, I don't feel like I have cancer. For now.
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Thank you, Kansas. I have been working non-stop on my emails and testimony. I enjoy writing and I believe strongly in the law. I am working with a group organized by Compassion and Choices who hired a lawyer to help volunteers like me get this passed. She is very responsive and answers my emails in hours (or less). She helps with editing since I am so naive about the legislative process. The sessions start on Jan. 29 and I can watch them online. Everything is virtual. If I testify, it will be by Zoom. Pretty exciting stuff but deadly serious. Pun intended.
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Jaycee, I was a closed captioner for the hearing impaired and did my fair share of legislative meetings. I’d love to watch them if you get a link or website that we can click on. Please keep me posted.
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KBL, what an interesting fact about you!
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Jaycee, great letter. If I may, will use part of it. I feel screwed between being a catholic and a wonderfully clueless husband that thinks or perhaps needs to lump DWD in with suicide of a young and otherwise healthy drug addict/ alcoholic.
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I have not looked into the specifics of DWD in CA but feel like I will definitely be open to it when the time comes. I am uncertain about how my dd’s will feel about that and haven’t discussed it with them yet. I won’t ask them to agree with my decision but I will ask them to respect it . But who knows? Perhaps they’ll both be supportive. Younger dd has always been able to deal with my bc realistically and she is fascinated by medical stuff. She is the one who often accompanies me to doctors appointments, scans, procedures, etc. She is also my second set of ears at important appointments. Older dd is much less comfortable and may not totally understand the implications of stage IV or perhaps chooses to not to believe the reality. I love them both and am lucky to have them nearby.
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Sunshine, yes, it was a great career. Most believed it was a computer doing the captioning. Now you can usually tell when it’s not a human. It’s sad that they’re going that direction because artificial intelligence isn’t nearly as accurate. An example I just saw was the person said but whole, and the AI put it as butthole whole. Lol.
I’ve never thought about the DWD until Jaycee posted about it. I’m also going to look it up.
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I just went and searched my state. Back in the beginning of 2020 a bill was introduced. In March, because of COVID, they stopped the bill indefinitely.
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KBL, I usually have the CC on when I'm watching TV or a movie. There were a couple of times when the CC was wrong - it made me laugh. There was one time in a Columbo movie that it was way off. It was pretty funny. BUT, that being said, there is NO WAY I could ever keep up with typing the CCing, especially if it were live. I'm impressed with your skills!
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Kjones, I wanted to express my sympathies at the passing of your mom. I am recovering from covid, so I have been keeping up with this thread but till now had no energy to write.
My mom was in her early 70s when she passed in 1997, she’d been in declining health, and shortly after her death, my dad, never sick a day in his life, was diagnosed with leukemia and passed 9 months after my mom. My six siblings and I were sort of shell shocked. An extremely difficult period of my life. I eventually found a very good book about life after loss to help me sort through it all. I learned that grief was love expressing itself in a different way. I learned it takes about 3 years to do the bulk of the work of grieving, that it is actual work to process many things over time, and that life continues moving forward even as we deal with grief. I learned the relationship with our parents does not end after they die. My parents were both incredibly dysfunctional and incredibly amazing. I learned to accept the many different feelings I have for them, that the feelings don’t necessarily get all sorted out and that’s okay.
I think we all go into a self-preservation type of denial dealing with the dying and death of loved ones. It’s a coping mechanism and I don’t think there is anything unusual about it. Over time, we accept the loss, but our personal psyche can only deal with it in very small increments. I’ve had numerous people tell me it feels like their loved one who passed is just away on vacation.
At first, we often focus on the last days, weeks or months of a parent’s life when things got bad, but in time, we begin to see the fullness of their lives of many years lived, and not just the end time.
We are all doing the best we can when taking care of someone who is dying. It never really goes as planned, even after reading all the literature and talking to the professionals. That’s just how life works and how the dying process unfolds. Your mom was truly blessed to have such a loving daughter to care for her, not everyone has that.
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SF-cakes, you have so much going on right now between you and your husband. My heart goes out to you.
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Sunshine, an easy way to tell if it's a live captioner is when it comes out one to two words at a time and not a whole chunk. Also, most videos on, say, YouTube will tell you it's auto captioning rather than a human. I made a few goofs in my day. Lol. Oh, the horror when it happened and being thankful no one could see my face. Lol
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Thank you Micmel and DivineMrsM for your kind words. It's quite the emotional balancing act between living life for today and accepting that death will happen sooner than I thought. Ah, all my expectations about how life was going to go!
Jaycee49, your letter is so excellent. I support your efforts to get the End of Life Option passed in your state, it seems unconscionable that this isn't an option for everyone with a terminal illness.
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Someone asked if they could use my letter. Of course. Someone wanted a link to the live sessions. I'll post it soon. We are VERY busy. It is really complicated with multiple steps, writing to different committees at different times in the process. And it must be timed perfectly. I finished 20 emails to one committee this morning and only two bounced. Definitely check DWD laws in your state. Most of them are patterned after Oregon's which was the first. There are several sticking points for me like the requirement that you have six months to live. How the heck are you supposed to know that? Hospice has the same rule.
KBL, I had a friend named Hayward. CC always had it as Haywire. Matched his personality, though.
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https://www.nmlegis.gov
Then you can choose webcast from the menu at the top. The committee where it is being heard is the health and human services committee. It begins at 8:30 AM MST on Friday, Jan 29.
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Jaycee, that's funny! Haywire for Hayward. I've seen Brass Valley for Grass Valley. I have friends who live in Grass Valley (near Lake Tahoe) so I know how it's spelled!
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Those are great examples of mistakes. Lol. I can’t begin to tell you how many I made over the years, but people talk really fast.
I will try to watch, Jaycee. I have a colonoscopy that day, and I don’t know what time yet. Darn it.0 -
KBL, would that be comparable to a data transcriptionist? I transcribed tutoring videos for a couple learning projects at the university I went to for quite some time. I understood physics really well by the end of the project. Lol. Had to put time stamps in etc. Became a really good typist too, very fast
Jaycee, I think your fighting for a good thing and I thought your letter was great.
Question. Concerning hospice, I thought because of how things have changed because of covid I wanted to see how in patient hospice changed, ie: their protocols etc. in case heaven forbid I'd need this information in the near future. I had chosen a place that was nice and had 24/7 visitation. Anywho, this hospice is restricting visitation hours now from 24/7 to 7am to 7pm via the new protocols I saw listed on their website. With those hours if I went inpatient I'd never see my beloved. So I guess my question is, exactly how comfortable can they make you at home vs inpatient. Can they do palliative sedation at home? My beloveds work keeps him 200 miles away from me all day until hes home in the evening, so the hours you can see would be a problem. My mother in law is 75 and a 3 yr breast cancer survivor, she has a hard time watching me at Stage 4 now, I can't imagine when it comes that time. So when I lose ability I'd need outside help. Mainly too because I'm kinda scared of the indignities that may/will come with the dying process. Heck I still deny after 18 years of marriage that I crap.
I live in a very strict state as far as covid restrictions and so I'm concerned they will stay in place beyond the summertime time frame they are talking about "regaining normalcy". I'm concerned this limits my options on where I go or can go without alot of sacrifice either way and the level of comfort I can have. I half thought of calling them and asking them these questions and how flexible they are but that might be a step further than I can handle right now. I'm ok and I think I'll be ok for awhile longer, I just sorta want to have my ducks in a row for future need should it come during all this mess. Any suggestions? Anyone else concerned about this?
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Rabbit,
Both my mother and my brother were on hospice at home before they passed. Yes, they can give you sedation, but a caregiver (if you are at home) would have to administer it. They explain how to do it, but I gotta tell you, it totally freaked me out with my brother. My mother was 92 and in an assisted living situation, so the caregivers there administered the sedation. My brother was in Alabama and my mother was in Maryland when they passed, and there were multiple agencies that provided hospice care in home, and actually more of those than live-in (?) hospice facilities. I know that all of this can differ from state to state.
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Rabbit, no, what I did was used a court reporter machine (I was a court reporter before I was a captioner) and I wrote what the person was saying live right when they were speaking. Here is what it looks like. The keyboard isn’t like a computer keyboard, it has no letters on the keys, and there aren’t 26 letters either. You learn and write things phonetically.
My brother just passed last Thursday and had in-home hospice. His DIL said they were wonderful. That’s all I know.
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Rabbit, I was a Hospice volunteer. In the county where I volunteered, all outpatient (home) Hospice patients had to have a 24 hour caretaker(s) in order to be eligible for Hospice services.
I witnessed many families who set up schedules for 24/7 day care. I saw women in book clubs schedule day shifts and husband have nights, so he could rest during the day and manage household. I also saw those with no one, do this alone.
My job was to donate 10-20 hours a week to give caretakers a break. Under Medicare Hospice, caretakers can elect, I believe, one respite admission. Meaning, their loved one could be in hospital for brief stay, to provide relief to exhausted caretaker.
I bought Long term care insurance, so I can ease this exhaustion on my family. But my DH said it would be worse..going back and forth, just sitting for hours, getting behind on household matters, feeling torn of not being there all the time. He would prefer home care, so lives would be less impacted. My brother regrets hospitalizing his wife..he was torn between driving long distances, sitting, watching and not knowing when or even how to leave his suffering wife. He wished she would have been home with Hospice. COVID restricted visitation in his specific hospital..therefore limited siblings, children, grandkids..it was awful.
I am leaning towards Hospice home care and hope I go quickly.
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KBL, what a cool job! I'm so sorry about the passing of you brother, but am glad hospice was good to him. I have heard good things about hospice generally and good to hear of another positive experience with it. I'm still sorry for your loss.
BevJen and Sandi, thank you! I think your writings inspired me to have a come to Jesus talk about me going TO Jesus at some point in the future with my beloved this evening. Since I would like to be home, but just worry if i will be comfortable enough and if Id be able to have enough care and if it would be too much burden. Its alot to ask for people to care for you in that way. Beloved looked at me and said he wouldn't leave my side ever when my time comes. I had been thinking he would want to work so he wouldn't go crazy watching, instead he surprised me by saying he'd go crazy if he wasn't there 24/7 and he'd work things out so he could be. I do not doubt he'll be there 24/7. I know I'd do the same for him.
Sandi, I really can see the point of being at home less disruptive and stressful in terms of caregivers lives, the back and forth etc. These insights are really helpful. I hope for quick too. I know its individual but I wonder if generally its quick.
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I watched my father pass away in a hospice home. I used to want to pass as home. I no longer feel that way. You're too wrapped up in emotions to really focus on the particulars that need to be done. Things that I wouldn't want my DH or dd or ds to have to deal with. I want them to spend time With me, not clean up my soiled self. I realized what a gift hospice was for us. It made that time intimate with him. Because we could really focus on him and saying what we needed to say. Holding his hands. Touching his hair massaging his feet and legs. When your body starts to die, it writhes and your muscles contort in involuntary ways. Legs bend funny ways and stretch and bend all around. The arms as well. They can also arch their backs a lot. The nurses helped with keeping him from falling out of bed. He was like solid weight. It's just difficult for the family already. Adding that to what they have been through and still have to go through. I can't do that to them. I also don't want my family to have to walk into the. Family home Knowing every time that I passed there. I want there to be good memories. Because it's where life happened.
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Thank you, Rabbit. It was a great career. I was in it for 35 years. And thank you for the condolences for my brother.
I think the only reason I would be okay being home when I die is I know as soon as he could, my husband would sell this house. I wouldn’t do it if I knew he was going to stay here.
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divine—thank you for your kind words. That means so much. Thank you for sharing your experiences as well. That helps:
Rabbit—I think it is possible to be comfortable at home with hospice. For me, Micmel hits the nail on the head. But.it really comes down to what YOU want. What is most important to you. The details can be figured out.
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I wanted to follow up on Jaycee to see how the hearing went..
KBL, just saw you post... I am so sorry about passing your brother, my condolences. Big hugs0
