A place to talk death and dying issues
Comments
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Thank you TheDivineMrsM, that was very great to hear coming from someone who has bone mets. From what you wrote it's incredibly different. She had it in the mid 70's and finished up in the early 80's. I heard meds have come a long way, but from what you described...well WOW!
I will take your words to heart and you will be my new reality of it. Thanks...I really needed to hear it.
Between you and a therapist I seen today...I'm actually in a much better space then I've been in for awhile. Thank you again...and life goes on...
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Yep. It is a stage iv dx. I take a mild anti anxiety medicine and I am moving forward with my life. Yes, you will have rough times. You can get through them and move on. You don't have to be strong, but it may happen that after you go through something like this, it ends up making you stronger in some ways.
One important thing you have is this forum which can offer worlds of support that your mom probably never knew. One of my doctors told me not to surf the internet because I would scare myself. So I don't research bc. I get great information here, it's my main source of help and support.
God bless you on your journey. Hang in there.
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Sas-schatzi - you're right. We have wills in addition to trusts and have named a trusted relative as executor. The attorney called them "pour over" wills. Anything not already in the trust is supposed to automatically pour over into it.
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Marty, When I saw your post with the mention of a"pourover Will" I figuired that is what it was, but didn't want to assume. What's need here is a solid definition for a POUR OVER WILL. Since you have one, I elect you to describe LOL.
I have a Will, everything else is by tod/pod and deed I have to review --Duh meant to do that. I've talked Trusts since the 80's while in my 40's. Trust are the top protection of assests, absolutely.
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Sas-schatzi- basically, the will leaves all personal property that is not in the trust to the trustee of the revokable trust. The purpose of the will is to get anything that might have been missed into the trust.
It's in the trust itself where we spell how our estate should be distributed. If one spouse dies,the other, as co-trustee, gets it all. If both spouses die, it all goes to a successor trust for our son. If our son were also to die, we have named some relatives to be next in line.0 -
Marty, we are saying the same thing, If you have a Trust have a Will too.
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My partner and I have had both Wills and Trusts for several years. It was a bit of a pain to organize and arrange the Trusts, but now that it's done, we're happy we took the time and spent the legal fees. I've since found it's a pretty simple matter to make ammendments to both if necessary.
Tina
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Babs15,
I agree with The Divine Mrs. M! Cancer treatments have changed dramatically since your mom took them. I had cancer the first time in 1987 and the treatments were terrible. I was sick. Stayed in bed a lot. All the while trying to raise 5, 6, and 11 year old children. Thankfully, the treatments worked and I am still here, though after a 20 year cancer hiatus, now in my 5th year of dealing with stage IV. I find my SE's very manageable and live a full life. I did go on disability 2 years ago because chemo was causing me to miss too much work and I just felt better being able to rest when I was tired. I travel as much as I can in between treatments, mostly visiting family and friends. You have much living to do and with all the pre-treatments given before chemo I don't think you will find the treatment as debilitating as it was to your mother. They also try to start with AI's which is basically taking pills. SE's vary from patient to patient but I found them tolerable other than neuropathy. Anyway, my advice is to give it a try. If you find it to be too much, you can always change your mind! Best wishes and hugs to you!0 -
Glenna E thank you for sharing. I'm tired. I'm tired of the whole thing... Think it 'really' matters if I come back to thinking about it in the fall?
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babs,
Maybe give yourself a couple of weeks to try to get your head straight. My onc has given me a couple of chemo breaks and it makes me crazy nervous. I don't know if I could wait til fall ( but that is me). I do feel you will find the SE's nothing as bad as those in the past!0 -
when mine wants to give me breaks I say no, I decide when the breaks are...
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Good for you Blondiex46, I just do what my mo says, maybe I need to be a little more proactive and involved in my treatments.
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I have a friend that doesn't know anything, and doesn't want to know....that drives me crazy, lol.....I finally got her to find out whether it was stage 4 cause there are alot grants she can get and you can apply for SSD and it is automatic...I run my treatment, not really controlling but am where this was concerned!!
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SSD is not automatic. It's expedited, but there is no guarantee she will get it.
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Macyhen, there are many patients who just do what the doctors suggest. There is absolutely nothing wrong with that. It can relieve your anxiety. We had a young man in our office with terminal liver cancer who couldn't tell me the name of the chemotherapy drug he was taking (which I've now decided was Xeloda).
My boss (a doctor) told me that actually most patients are like him. However, you won't find very many of that phenotype on this board. Women to gravitate here are the type of people who want to know more and want to understand/be in control/make decisions.
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I was told it was automatic sorry
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pajim, I agree with your post. This site has helped me become a better advocate for myself when it comes to health care, and to be more assertive (polite but firm) when it comes to dealing with medical personnel. It's also helped me speak up for others. When my DH took a trip to the ER for possible pneumonia earlier this year, I stayed on top of what was going on by asking lots of the right questions to the different employees who took care of him. If it were just him, he kind of just lays back and accepts what they tell him and doesn't like to make waves. Ask him what kind of antibiotic the doctor gave him and he won't know! (---!)
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I am a good mix in between from knowing everything to knowing next to nothing.
I know all my medicines, why i take them and what are the possible SEs (nothing possible about it LOL seems i am getting all of them with this chemo this time!)
But after my last recurrance i dont care to know anything that pops up on the scan unless it is effecting my physically.
Mrs M- Yes! this is an awesome place to learn how to become a better advocate for ourselves! Lots of GREAT info here!
Blondie- SSD is "automatic" if you're stage 4 in the sense that you are automatically concidered "disabled"- now getting benefits is an other story! SSD- need the right amout of work credits. SSDI- Need to be low income. This is a basic analysis- just meant to simplify
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Besides having work credits SSD can also be drawn on spouses work record if spouse is deceased and one is the age of at least 50.
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Once again, you are not automatically considered disabled just because you are Stage IV. There are a number of people who have been denied disability even though they had all the proper credits. The panel decided that they were capable of work in spite of their diagnosis.
Seems cruel, but there it is. :-(
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Not posted here before :
We have wills, power of attorney but I don't think we have enough to ever think of a trust so that has never come up in discussions.
Here we have two different approaches to funerals evolving. One is that there is a private ceremony, say in the morning, and then later in the day there is a memorial service with receiving & reception afterwards.
Second approach is one others have mentioned. Receiving is at the church and then the service is held with burial afterwards.
I like the first approach of a private family and close friends burial with the service later, and after the service the receiving and reception. It really comes down to what is most comfortable for my family. My mom and brother have both gone to the funeral home and picked out their casket, paying for the burial cost. I haven't done that yet and not sure if I will. We do have burial plots. I have thought about my service - hymns, choir specials (I belonged to the choir and it is common to have the choir do some of their songs that have touched the person) and scripture that is special to me.
So guess, I haven't really done very much planning. I do need to decide who gets what pieces of jewelry that have any value. Just so easy to put it all off when you are in treatment, feel bad and then on the good days you don't even want to think about Christmas.
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Taken from the SSA's website
WHAT DOES “DISABLED” MEAN FOR AN ADULT?
If you are age 18 or older we may consider you “disabled” if you have a medically determinable physical or mental impairment (including an emotional or learning problem) which:
results in the inability to do any substantial gainful activity; andcan be expected to result in death; orhas lasted or can be expected to last for a continuous period of not less than 12 months.SSA has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. The Compassionate Allowances (CAL) initiative allows Social Security to target the most obviously disabled individuals for claims approval based on objective medical information that we can obtain quickly. Fifty medical conditions were initially selected for this initiative. Since that time we have added 150 additional conditions bringing the total number of conditions to 200. The list may expand over time. A complete list of CAL conditions may be viewed online at: http://www.socialsecurity.gov/compassionateallowances/conditions.htm.
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Oh yes forrestdweller- As i am only 30 i tend to forget about spouse death as one of the qualifiers, although a spouse's death can give you benefits before you are disabled.
Susan- Since the SSA states on their website "can be expected to result in their death" stage4 sadly will result in a majority of our deaths. I dont know the circumstances surrounding their denials but I do know sometimes doctors can word their paperwork they are required to fill out in a way that seems that we're just dealing with the equivalent of a hang nail. My oncologist is the one that suggested I apply, it hadnt crossed my mind before that.
I had a friend with MS that was denied SSD because she had "good days" among her many bad days. Sadly most jobs wont let you take off work because you cant even get out of bed. But the SSA seems to think so!
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It is the first blue bullet that has been an issue for some women, as I understand it from talking with these folks. I have no skin in this game at this point. Just reporting what is happening out in the field, so to speak. *susan*
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I get SSDI but not SSI wonder if I should apply for that one.....I didn't qualify for it before cause twins got it but they aged out and do not qualify for it anymore....have to check....
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susan- BTW everytime i type or read your name i think of the mosters vs alien cartoon where it goes "Suuuuuesan" (think of boo like a ghost would say)
Okay anyhow, yes thats what i mean by what the drs write in their reports. they could be minimizing the patients symptoms. i know with the amount of time i am down because of tx any job would fire me in a heartbeat. i normally nap during the day so i have energy to be with my kids after school and night time...
i dont personally qualify for it due to income (but it cancels itself out as my medication costs more than my husband makes a month but they dont give a crap about that) i should appeal but dont have the engery to deal with them.
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Texas, I don't know that reference. Will have to ask my kid! *susan*
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I've been reading this thread little by little and wanted to share. Last year, my 48-year-old brother died suddenly of a heart attack. He was a single man. I decided to buy a cemetery plot in our town and had a slanted, two-stone marker placed. One side is for my husband and I which we had engraved with our names. On the other side, we had my brother's name and date of birth and death. It took a load off my mind to know my children and husband will not have to deal with any of that. Yesterday, my husband and I went to the cemetery to place flowers. I looked at him and said "did you ever think we'd be putting flowers on our own graves together?" How many people get to do that? It was kind of funny......in a weird way! Jean
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thanks bon
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wow, it sure is very expensive to die in the US. Lucky I am I don't pay anything, but the grave I choose, everything else handled by the municipality..yay??
Ebru
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