› Forums › Caregiver Community › putting affairs in order
- This topic has 52 replies, 16 voices, and was last updated 12 years, 11 months ago by
JerryfromFauq.
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- June 9, 2011 at 4:01 pm
Nothing makes me angrier than when I hear someone say that their doctors told them they have just a few months to live. Even if things are grim, there's no predicting death! Over the years here, I've seen so many miracles happen that it almost makes me believe in God.
But when asked for advice from the newly diagnosed….it's the same advice I want to give. Get your shit together.
Nothing makes me angrier than when I hear someone say that their doctors told them they have just a few months to live. Even if things are grim, there's no predicting death! Over the years here, I've seen so many miracles happen that it almost makes me believe in God.
But when asked for advice from the newly diagnosed….it's the same advice I want to give. Get your shit together.
Sometimes, I scare people off, saying things so bluntly. We all only have ONE day to live. today. this one, all of us, not just cancer patients, and all of us should be ready for death…as ready as we can be.
It's a hard place to find oneself, because as patients, and as caregivers, we want to have the MOST positive attitude ever. And it's hard to keep that great attitude while actively planning for your death. People think that they need to banish any thought of death in order to …I don't know…send ONLY the positive into the universe. Like if they even THINK that death might be imminent, that will influence the cosmos and send death streaking toward them. But.. it's not magic. A positive attitude will help you, in all regards, but if you take an hour off to see a lawyer and write your will, it's not going to break the magic-positive-web you have built. And..if you do it, then you can stop thinking about it! And no matter how positive you are..you ARE thinking about it sometimes. Maybe it's even keeping you awake at night.
Realistically, we all should have done this way before we got this crappy diagnosis. Hardly anyone thinks of writing a will when they are 25 and can't imagine death. BUT..we should. it's just a damn legal thing, and we should have it done.
So..if you are a patient, do your spouse a favor, and just bite the damn bullet and plan your death! No matter how it might seem like it, it is NOT like you are accepting that death is around the corner, it's just doing what's right. Because guess what, every time you go under general anesthetic you could die. any of us. Not to mention the more serious risks involved in almost every treatment out there.So..even if you are 19 yrs old, if you are a patient, put your affairs in order. Let people know what you want to have happen after you die. Or at the very least….make a will. Don't let superstition stop you. And don't make your spouse have to bring it up. And for God's sake, don't leave them fumbling, after your death, soaked in grief, trying to figure you out how to get into your bank account.
And..while you are at it, make sure that spouse of yours makes a will too. Because here's something else you might not think of. YOU might not be the one to die first! Remember that 'we only have one day' that goes for your healthy spouse too. And the last thing you need as a patient is to be in the middle of some ghastly months long treatment and suddenly need to plan the funeral of your wife.
Making these plans is not an admission of defeat. Making these plans will NOT hurry death along. Making these plans will just make things easier for you in the long run, and give you the chance to face all of the challenges you have without having this worry in the back of your mind about what will happen if the worst does come true.
Sometimes I also talk to caregivers, instead of patients. Sometimes that's a wife, who's spent most of her adult life raising toddlers and who suddenly finds herself with a critically ill husband, an uncertain future, and a world of fear.
Slap me, but here's what I want to tell them: Get a job.
True, it's hard to hold down a job when you already have 3 kids to raise and now a sick husband that needs your help. But if things go bad, that husband is going to be in recovery from some treatment and/or surgery. Even if he's lucky enough to pull through and recover and do GREAT and you have a long and happy life, there's going to be a time when he's not able to earn money.So on top of all the fear, pain and horror of melanoma, you are going to have short income. Worst case, you'll lose your insurance and things will go from bad to wretched.
So if it's possible, get a job. or go back to school. Find a way to think, in your mind, what you will do if you are suddenly a single parent. plan for your future. take charge.
I also talk to a lot of caregivers who are the primary earner….so I'm not suggesting that getting a job will solve everything, or even anything. You caregivers with full time jobs know how hard it is. You still have to find time to be with your spouse, organize care, deal with doctors…hell..sometimes QUITTING your job is what you want to do.
I'm in that camp that feels like it is harder to be a caregiver than a patient, so you all have my deepest empathy. Some of you are out there spending ALL of your time thinking of your spouse. But you have to think of yourself too, and what the future holds for you. So spend a little time doing that.
Visualize growing old and happy together. But spend a little time planning out the alternatives too.
dian in spokane
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- June 9, 2011 at 4:09 pm
Funny you mention this today. I have been married almost a year now, and this is also what we are discussing as well. I am the anti that keeps saying I am not planning to die anytime soon (who really knows?) and the wife says that I need to update my will.
So, I told her I would do it over the weekend.
Hope you are well,
Michael
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- June 9, 2011 at 4:09 pm
Funny you mention this today. I have been married almost a year now, and this is also what we are discussing as well. I am the anti that keeps saying I am not planning to die anytime soon (who really knows?) and the wife says that I need to update my will.
So, I told her I would do it over the weekend.
Hope you are well,
Michael
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- June 9, 2011 at 4:31 pm
Nothing like scaring the you know what out of me with that title Dian.
I agree whole heartedly about filling out the will regardless of age, patient, caregiver, etc. Medical and Financial Power of Attorney as well.
One thing I thought I'd mention is the relief I felt once my will was out of the way. It was like a huge weight was lifted. One less thing to worry about when there were plenty of other things to tackle.
Cheers,
Chris B (ChrisB~StageIV from MPIP)
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- June 9, 2011 at 4:31 pm
Nothing like scaring the you know what out of me with that title Dian.
I agree whole heartedly about filling out the will regardless of age, patient, caregiver, etc. Medical and Financial Power of Attorney as well.
One thing I thought I'd mention is the relief I felt once my will was out of the way. It was like a huge weight was lifted. One less thing to worry about when there were plenty of other things to tackle.
Cheers,
Chris B (ChrisB~StageIV from MPIP)
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- June 9, 2011 at 4:56 pm
Hi Dian,
Geez, I was not ready for another hit today with your subject line! I was glad to read your comment though. You speak very passionately, and I agree. I am all for sending good vibes into the "universe", and I do whole-heartedly believe in God, that doesn't make me a super hero, that makes me human. Fortunately, my human self has made those "death plans".
I would just like to add a tag line to your will making and add getting life insurance. I was very lucky, in my younger self (okay, not when I was burning in the sun) to have started a life insurance policy that is still in effect today. Nobody knows who gets to go set up house in heaven first but knowing I will be (and my spouse) able to ease the finacial burden when one of us passes is something neither of us will have to worry about.
Take Care.
Laurie
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- June 9, 2011 at 4:56 pm
Hi Dian,
Geez, I was not ready for another hit today with your subject line! I was glad to read your comment though. You speak very passionately, and I agree. I am all for sending good vibes into the "universe", and I do whole-heartedly believe in God, that doesn't make me a super hero, that makes me human. Fortunately, my human self has made those "death plans".
I would just like to add a tag line to your will making and add getting life insurance. I was very lucky, in my younger self (okay, not when I was burning in the sun) to have started a life insurance policy that is still in effect today. Nobody knows who gets to go set up house in heaven first but knowing I will be (and my spouse) able to ease the finacial burden when one of us passes is something neither of us will have to worry about.
Take Care.
Laurie
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- June 9, 2011 at 5:13 pm
You rock Dian! This is just what I needed to hear today. I dont really consider myself a caregiver because my husband is fine..but we live in fear that this could change at any moment. It would take a load off my shoulders to plan for the worst now ..just in case. Right now we are fine, both with full time jobs and life insurance, but I know if my husband progresses that might not be the case.
I just dont know where to start in planning… for death. Any suggestions for a resource that can help me do this?
Thanks again
Emily
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- June 9, 2011 at 5:13 pm
You rock Dian! This is just what I needed to hear today. I dont really consider myself a caregiver because my husband is fine..but we live in fear that this could change at any moment. It would take a load off my shoulders to plan for the worst now ..just in case. Right now we are fine, both with full time jobs and life insurance, but I know if my husband progresses that might not be the case.
I just dont know where to start in planning… for death. Any suggestions for a resource that can help me do this?
Thanks again
Emily
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- June 9, 2011 at 5:20 pm
One practical question: as a (former) caregiver, I was in an unusual situation because Will had excellent medical insurance that was not tied to his ability to work, and no debts, etc. Money was not a concern, nor was I in any way dependent on him for support. But when he became ill, there was no way I could have cared for him and worked full time, and later, the only way I could keep my part time job was to rely heavily on my friends & family to help me with him, because he could not be left alone.
What kind of support resources exist for someone who has to be able to provide a lot of caregiving while trying to keep a job? It seems like there is a huge gap there – how can it be addressed best?
Lori
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- June 9, 2011 at 5:20 pm
One practical question: as a (former) caregiver, I was in an unusual situation because Will had excellent medical insurance that was not tied to his ability to work, and no debts, etc. Money was not a concern, nor was I in any way dependent on him for support. But when he became ill, there was no way I could have cared for him and worked full time, and later, the only way I could keep my part time job was to rely heavily on my friends & family to help me with him, because he could not be left alone.
What kind of support resources exist for someone who has to be able to provide a lot of caregiving while trying to keep a job? It seems like there is a huge gap there – how can it be addressed best?
Lori
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- June 9, 2011 at 5:42 pm
Dian,
You wrote an excellent post full of good advice, whether you believe in God or not. Whether you're normally a positive person or not. Whether you've got cancer or not, are a care-giver or not. In the end, none of that changes the fact that we'll all die, we'll all leave someone something, and we'll all leave …a bunch of blanks to be filled in depending on our own situations.
Wills can be changed and updated as time passes and as our lives change. And PLEASE don't do like my late mother-in-law and let all 5 children know who she wanted to have what…not worth the air it's spoken in! Put it in writing and sign it. A nice fancy lawyer-written will is nice but not necessary.
If you're reading this, you're online and can access your state's or country's laws. And while you're at it, please write down your wishes for your funeral, leaving your organs for transplant or your body to science, any particulars…make sure they're in writing, where someone knows where they are, and discuss those wishes with your family and that includes your children if they're at least older teens because they'll probably be the ones to carry those wishes out.
In my mind I plan to see 80, another 29 years. In reality, the first 51 have passed quickly, I've got melanoma (though doing well now), and I've seen how quickly a car crash can change life and could have ended it. While another 29 years or so will be nice, it's not guaranteed. Death is.
It's also guaranteed we don't know when it will happen. God is pretty clear on that. And the rules of nature back it up.
Thanks Dian.
Grace and peace,
Carol
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- June 9, 2011 at 5:42 pm
Dian,
You wrote an excellent post full of good advice, whether you believe in God or not. Whether you're normally a positive person or not. Whether you've got cancer or not, are a care-giver or not. In the end, none of that changes the fact that we'll all die, we'll all leave someone something, and we'll all leave …a bunch of blanks to be filled in depending on our own situations.
Wills can be changed and updated as time passes and as our lives change. And PLEASE don't do like my late mother-in-law and let all 5 children know who she wanted to have what…not worth the air it's spoken in! Put it in writing and sign it. A nice fancy lawyer-written will is nice but not necessary.
If you're reading this, you're online and can access your state's or country's laws. And while you're at it, please write down your wishes for your funeral, leaving your organs for transplant or your body to science, any particulars…make sure they're in writing, where someone knows where they are, and discuss those wishes with your family and that includes your children if they're at least older teens because they'll probably be the ones to carry those wishes out.
In my mind I plan to see 80, another 29 years. In reality, the first 51 have passed quickly, I've got melanoma (though doing well now), and I've seen how quickly a car crash can change life and could have ended it. While another 29 years or so will be nice, it's not guaranteed. Death is.
It's also guaranteed we don't know when it will happen. God is pretty clear on that. And the rules of nature back it up.
Thanks Dian.
Grace and peace,
Carol
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- June 9, 2011 at 6:27 pm
Dian,
We already had wills in place, due to my husband's mutliple military deployments. I was shocked how much of it was outdated though: our friends/guardians had ALL moved to new addresses, and so on.
I updated my will, update my medical directive AND gave copies to my doctors and the hospital. I also made a hit list of accounts that would need to be updated or closed.
Finally, since all of my family lives out of state, I listed the contact info for everyone who would be handling affairs here, and the contact info for my parents, etc out of state. Yes, their phone numbers are in the cell phone, but so what?! A list that can be copied and handed out to whomever is helping is quicker.
I have a codicil (separate list) to my will, listing any specific bequests (jewelry to my daughters). If it's not written down, it can cause all kinds of misunderstandings.
We all should have wills, whether we are 100% healthy or not. It's just one small thing to smooth over what will inevitably happen to us all!
TracyLee
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- June 9, 2011 at 6:27 pm
Dian,
We already had wills in place, due to my husband's mutliple military deployments. I was shocked how much of it was outdated though: our friends/guardians had ALL moved to new addresses, and so on.
I updated my will, update my medical directive AND gave copies to my doctors and the hospital. I also made a hit list of accounts that would need to be updated or closed.
Finally, since all of my family lives out of state, I listed the contact info for everyone who would be handling affairs here, and the contact info for my parents, etc out of state. Yes, their phone numbers are in the cell phone, but so what?! A list that can be copied and handed out to whomever is helping is quicker.
I have a codicil (separate list) to my will, listing any specific bequests (jewelry to my daughters). If it's not written down, it can cause all kinds of misunderstandings.
We all should have wills, whether we are 100% healthy or not. It's just one small thing to smooth over what will inevitably happen to us all!
TracyLee
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- June 9, 2011 at 6:39 pm
Dear Dian,
Well said, and timely, given the many new folks on the board and a good reminder for us "old" folks…..
Vermont_Donna, stage 3a, Now NED after Ipi
ps…just a note…dont think we cancer patients, melanoma anyways, can donate blood or organs….anyone know for sure on this?
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- June 9, 2011 at 6:39 pm
Dear Dian,
Well said, and timely, given the many new folks on the board and a good reminder for us "old" folks…..
Vermont_Donna, stage 3a, Now NED after Ipi
ps…just a note…dont think we cancer patients, melanoma anyways, can donate blood or organs….anyone know for sure on this?
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- June 9, 2011 at 7:13 pm
Donna,
We are not able to donate blood or organs. While you might be NED that doesn't mean that you don't have loose cells lying in wait. These could be transferred during a blood transfusion or transplant. In the past someone looked this up and it was directly quoted from bloodbank information. It's also just good common sense.
THis is also true for those that are stage 1A! I was stage 1A for 27 years before becoming stage IV. My mel was not in the lymphatics it was carried through the blood stream. Thankgoodness I was ineligible (other reasons) to give blood. I can't imagine how many people I could have infected with this disease. The blood bank I'm a member of required a donation at least every 3 years. My husband always gave for us.
Linda
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- June 9, 2011 at 7:13 pm
Donna,
We are not able to donate blood or organs. While you might be NED that doesn't mean that you don't have loose cells lying in wait. These could be transferred during a blood transfusion or transplant. In the past someone looked this up and it was directly quoted from bloodbank information. It's also just good common sense.
THis is also true for those that are stage 1A! I was stage 1A for 27 years before becoming stage IV. My mel was not in the lymphatics it was carried through the blood stream. Thankgoodness I was ineligible (other reasons) to give blood. I can't imagine how many people I could have infected with this disease. The blood bank I'm a member of required a donation at least every 3 years. My husband always gave for us.
Linda
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- June 9, 2011 at 7:23 pm
This is the first url that I could find that gave exclusions to giving blood, there are many more than you would think!
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- June 9, 2011 at 7:23 pm
This is the first url that I could find that gave exclusions to giving blood, there are many more than you would think!
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- June 10, 2011 at 3:47 am
Dear Linda,
I actually knew that we as melanoma patients (and probably other cancer patients) couldnt donate blood and I figured same goes for organ donation, but thought I'd put it out there for someone to answer (thank you) with a link, and more of the "facts". THANKS!!
Vermont_Donna
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- June 10, 2011 at 3:47 am
Dear Linda,
I actually knew that we as melanoma patients (and probably other cancer patients) couldnt donate blood and I figured same goes for organ donation, but thought I'd put it out there for someone to answer (thank you) with a link, and more of the "facts". THANKS!!
Vermont_Donna
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- June 10, 2011 at 4:36 am
Donna,
After I attached that link on blood donations, I started looking up organ donations. There wasn't anything that I could find that was as clear cut. I found one site that said that most organ donations come from anurysms and car accidents. If someone is clear from "some" types of cancers for several years their organs could be considered. This article said that those with leukemia could never donate. The blood donor article was clear and consise. I just can't imagine giving an organ to someone whose health is already so compromised with the chance that there are those loose cells. I believe that those of us that achieve NED have immune systems that are continuing to fight off those loose cells. For someone else this would be new to their systems.
When we moved this past year and I got a new drivers license I took my name off of the organ donation list. I have 2 friends that have/had enjoyed longer lives because of donations and this was something I had always planned on doing.
Little known fact: Organ recipients are extremly susceptible to squamish cell due to the anti-rejection drugs. My dear friend Bill died from this after he had received his kidney years earlier. When helping him look for trials I discovered that being an organ recipient made him ineligible for the trials. Dr. Lynn Schuchter treated him. Many on this board know of her for her work with melanoma in Philadelphia.
Linda
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- June 10, 2011 at 4:36 am
Donna,
After I attached that link on blood donations, I started looking up organ donations. There wasn't anything that I could find that was as clear cut. I found one site that said that most organ donations come from anurysms and car accidents. If someone is clear from "some" types of cancers for several years their organs could be considered. This article said that those with leukemia could never donate. The blood donor article was clear and consise. I just can't imagine giving an organ to someone whose health is already so compromised with the chance that there are those loose cells. I believe that those of us that achieve NED have immune systems that are continuing to fight off those loose cells. For someone else this would be new to their systems.
When we moved this past year and I got a new drivers license I took my name off of the organ donation list. I have 2 friends that have/had enjoyed longer lives because of donations and this was something I had always planned on doing.
Little known fact: Organ recipients are extremly susceptible to squamish cell due to the anti-rejection drugs. My dear friend Bill died from this after he had received his kidney years earlier. When helping him look for trials I discovered that being an organ recipient made him ineligible for the trials. Dr. Lynn Schuchter treated him. Many on this board know of her for her work with melanoma in Philadelphia.
Linda
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- June 10, 2011 at 1:26 pm
Dear Linda,
Well my thought that I have been kicking around is that I would have it arranged for my body to be donated to a medical research hospital for cancer research…heck maybe even the facility where I go…there is a medical school at Dartmouth College. So I am thinking about it. After a year they arrange for cremation and the ashes are given back to the family, or whatever is arranged not sure, but my understanding from a friend who's mom did this, is they had her body one year, then she was cremated and the ashes given back. my friend felt that closure was hard for her as she felt that as long as she knew her mom's body was being used for medical research, anatomy and physiology labs, etc, that she couldnt "release" her. I think what a beautiful thing to do, and if it helps melanoma research, I think I would like to do this. Just thinking.
Vermont_Donna
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- June 10, 2011 at 1:26 pm
Dear Linda,
Well my thought that I have been kicking around is that I would have it arranged for my body to be donated to a medical research hospital for cancer research…heck maybe even the facility where I go…there is a medical school at Dartmouth College. So I am thinking about it. After a year they arrange for cremation and the ashes are given back to the family, or whatever is arranged not sure, but my understanding from a friend who's mom did this, is they had her body one year, then she was cremated and the ashes given back. my friend felt that closure was hard for her as she felt that as long as she knew her mom's body was being used for medical research, anatomy and physiology labs, etc, that she couldnt "release" her. I think what a beautiful thing to do, and if it helps melanoma research, I think I would like to do this. Just thinking.
Vermont_Donna
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- June 9, 2011 at 7:41 pm
Rats! Not that I have too terribly much anyone would want, but I never thought of that change! Thanks for letting me know. I'll get that changed on my license. OK, those that are in our households that also need wills and last instructions that do NOT have cancer, they need to be sure organ donation wishes are known…especially if the person does NOT want organs donated.
Grace and peace,
Carol
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- June 9, 2011 at 7:41 pm
Rats! Not that I have too terribly much anyone would want, but I never thought of that change! Thanks for letting me know. I'll get that changed on my license. OK, those that are in our households that also need wills and last instructions that do NOT have cancer, they need to be sure organ donation wishes are known…especially if the person does NOT want organs donated.
Grace and peace,
Carol
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- June 9, 2011 at 6:59 pm
Well, having recently experienced Jim's death on Nov 30, 2010, I can tell you it is such a shock even though you know it's going to happen. It is good to be prepared. We each had wills. We updated them in September of 2010. I had to push for this. I typed then, from our old will and changed whatever needed to be changed. I had them signed , witnessed, and notarized. Jim was sick and he didn't care about any of it. We had previously done living wills, did not redo them, and as old as they were, they took the living will for Jim and copied it. They did tell me I could change it at any time….like you even know what to think at a time like that. I changed nothing. We had did this years ago together ,agreeing on what to check and what not to check. Fortunately, Jim had some life insurance with his work that was still in effect…and I pushed 8 years ago, and had to make him, by nagging him to take out another policy out of the work place….He finally did it, not as much as I wanted him to do, but a okay amount. It was fairly expensive as he was a smoker. That money now is a special fund making money for me later down the line when I need it. After a death, there is so much to do, you just cannot imagine. I had life polices on myself also, but not as much as Jim's, since he was in a position to make more money, if I had passed first. There are names to be changed on checking accounts, home loans, car loans, IRA's CD's, everything has to be chanaged and it's such an awful time for you. And you need a death certificate for everything. I had been in a major car accident (not my fault) on Nov 2nd, and had not had my car in a month, it was totaled, and the day after Jim's funeral, I had to turn it in….And so on Dec 3rd, traded in his truck for a car for me, crying all the time…such a difficult time to make important decisions. Fortunately, I had my son-in-law with me that helped me all the way through the decision making. Since all this, I have now got everything changed over to my name, with my daughter assigned as Power of Attorney, should anything happen to me, she can take care of my business. Jim always took care of me…I know nothing about cars, but am learning…In fact, I had just learned how to do gas…he always did it for me. Now, I know when to take my car in for service to get the oil changed and tired rotated. I have sodded my front yard, because all the grass died out because during the fall we were not taking care of it, and then we had an extremely hard winter…it all died out. But, it is looking good..Jim would be surprised and proud of me. Saying, all this and I know I am rambling…..get your wills done, get life insurance beneficaries checked, do a Power of Attorney, do a Living Will. Most of this we had done….So glad, because it is very overwhelming to be filing death claims, going to Social Security, and then filing Agent orange Claims, and your body is still reeling from a majr car accident…Do as much as you can before……then let it go…….and then LIVE YOUR LIFE!! Life is so precious, each day is a gift.
Dian- good advice….sorry everyone I have rambled so much….better get back to work.
Take Care,
Sherron, wife to Jim FOREVER
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- June 9, 2011 at 6:59 pm
Well, having recently experienced Jim's death on Nov 30, 2010, I can tell you it is such a shock even though you know it's going to happen. It is good to be prepared. We each had wills. We updated them in September of 2010. I had to push for this. I typed then, from our old will and changed whatever needed to be changed. I had them signed , witnessed, and notarized. Jim was sick and he didn't care about any of it. We had previously done living wills, did not redo them, and as old as they were, they took the living will for Jim and copied it. They did tell me I could change it at any time….like you even know what to think at a time like that. I changed nothing. We had did this years ago together ,agreeing on what to check and what not to check. Fortunately, Jim had some life insurance with his work that was still in effect…and I pushed 8 years ago, and had to make him, by nagging him to take out another policy out of the work place….He finally did it, not as much as I wanted him to do, but a okay amount. It was fairly expensive as he was a smoker. That money now is a special fund making money for me later down the line when I need it. After a death, there is so much to do, you just cannot imagine. I had life polices on myself also, but not as much as Jim's, since he was in a position to make more money, if I had passed first. There are names to be changed on checking accounts, home loans, car loans, IRA's CD's, everything has to be chanaged and it's such an awful time for you. And you need a death certificate for everything. I had been in a major car accident (not my fault) on Nov 2nd, and had not had my car in a month, it was totaled, and the day after Jim's funeral, I had to turn it in….And so on Dec 3rd, traded in his truck for a car for me, crying all the time…such a difficult time to make important decisions. Fortunately, I had my son-in-law with me that helped me all the way through the decision making. Since all this, I have now got everything changed over to my name, with my daughter assigned as Power of Attorney, should anything happen to me, she can take care of my business. Jim always took care of me…I know nothing about cars, but am learning…In fact, I had just learned how to do gas…he always did it for me. Now, I know when to take my car in for service to get the oil changed and tired rotated. I have sodded my front yard, because all the grass died out because during the fall we were not taking care of it, and then we had an extremely hard winter…it all died out. But, it is looking good..Jim would be surprised and proud of me. Saying, all this and I know I am rambling…..get your wills done, get life insurance beneficaries checked, do a Power of Attorney, do a Living Will. Most of this we had done….So glad, because it is very overwhelming to be filing death claims, going to Social Security, and then filing Agent orange Claims, and your body is still reeling from a majr car accident…Do as much as you can before……then let it go…….and then LIVE YOUR LIFE!! Life is so precious, each day is a gift.
Dian- good advice….sorry everyone I have rambled so much….better get back to work.
Take Care,
Sherron, wife to Jim FOREVER
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- June 10, 2011 at 12:26 am
Hear HEAR, Di!
The week after the diagnosis I was at the solicitors office getting my shit together. (An out of the blue stage 4 with brain mets diagnosis tends to do that :D) I knew that unless I had these important things sorted I wouldn't be able to concentrate and jump 100% into the fight. And I was a single mother with brain surgery in the very new future (and the first time one has that, there is usually a great fear or the unknown and worse case scenario's in the forefront of your mind :D)
Yes, there was the usual Will 'stuff' surrounding Georgia and legal gaurdianship after my death, and financial issues. That was confronting, but nowhere near as confronting as the other stuff.
After that, my concerns were Appointing a legal guardian for myself (should something affect my mental capacity to make my own decisions) – with attached instructions if I became to difficult to care for if impaired, then the family were to either put me in a nursing facility or hospice care. I wanted to remove that decision (and hopefully an attached guilt from them)
Then onto the Advanced Health Care Directive. It feels kind of weird telling someone under which circumstances you don't want to be resuscitated, and other decisions surrounding your life/death/health care. Once again, I didn't want them having the burndens of making those decisions on my behalf. I knew it was the right thing to do, especially as I sat there next to my (big, tough, stoic) brother with tears rolling down his face while I stated my wishes- possibly among the 2 most heartbreaking things I've ever had to witness.
Once things had settled a bit after the initial panic and surgery, then I did the other important stuff. Cards, letters & a few presents and instructions about presents etc. for G's birthdays and other important occasions. My friends and I looked a sight, all standing around the cards reading them and crying our eyes out, I can tell you 🙂 I also admit I had to fortify myself at 9:30am with a couple of champagnes to write my thoughts and wishes to Georgia.
I've even ordered wrist bands so that those in my life who are important to me, are the only ones able to get "top shelf" alcohol for nix at the wake, following the funeral. (I really dislike those hangers-on who show up to funerals who barely knew the person, or who the person actively disliked, and then proceed to treat it as a free drinking session) The non-wrist bands get beer and house wine only 😛
My preferences for my funeral are all arranged. No church. Just in a room at the actual funeral home. Chose my music. Chose to be cremated (which is a 2 hour drive) with instructions that people were NOT to drive to that, but instead, to attend the wake/celebration at a local club.
All that, was now OVER 3 YEARS AGO, and yesterday I celebrated my 40th birthday *gasp*… which I was never expected to get to, least of all to be functioning independently and maintaining good mental/physical abilities.
For some of the more newly diagnosed I'd just like to say, YOUR melanoma path is unique to you- how someone else responds is not necessarily indicative of what lies ahead for you. Please stop transferring the outcomes of other people onto yourselves. You're doing yoursleves a disservice. Let your hope come from within, and your fears as well, rather than using others as a yardstick to measure what is likely to be in your future. We all "what if?" at times, but it seems some don't let go of that thought, and forget to live their lives. (Which is frankly, the reason I don't bother much over here these days. It's too frustrating and it brings me down. NOT the actual stories of people's life events with less than happy outcomes, but the reactions of other people to them.) For me, life is too short and I'm busy living mine and enjoying it too much to bring myself down on here.
What happened to this place?!?!?!?! (And I don't mean the MRF upgrades…)
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- June 10, 2011 at 12:26 am
Hear HEAR, Di!
The week after the diagnosis I was at the solicitors office getting my shit together. (An out of the blue stage 4 with brain mets diagnosis tends to do that :D) I knew that unless I had these important things sorted I wouldn't be able to concentrate and jump 100% into the fight. And I was a single mother with brain surgery in the very new future (and the first time one has that, there is usually a great fear or the unknown and worse case scenario's in the forefront of your mind :D)
Yes, there was the usual Will 'stuff' surrounding Georgia and legal gaurdianship after my death, and financial issues. That was confronting, but nowhere near as confronting as the other stuff.
After that, my concerns were Appointing a legal guardian for myself (should something affect my mental capacity to make my own decisions) – with attached instructions if I became to difficult to care for if impaired, then the family were to either put me in a nursing facility or hospice care. I wanted to remove that decision (and hopefully an attached guilt from them)
Then onto the Advanced Health Care Directive. It feels kind of weird telling someone under which circumstances you don't want to be resuscitated, and other decisions surrounding your life/death/health care. Once again, I didn't want them having the burndens of making those decisions on my behalf. I knew it was the right thing to do, especially as I sat there next to my (big, tough, stoic) brother with tears rolling down his face while I stated my wishes- possibly among the 2 most heartbreaking things I've ever had to witness.
Once things had settled a bit after the initial panic and surgery, then I did the other important stuff. Cards, letters & a few presents and instructions about presents etc. for G's birthdays and other important occasions. My friends and I looked a sight, all standing around the cards reading them and crying our eyes out, I can tell you 🙂 I also admit I had to fortify myself at 9:30am with a couple of champagnes to write my thoughts and wishes to Georgia.
I've even ordered wrist bands so that those in my life who are important to me, are the only ones able to get "top shelf" alcohol for nix at the wake, following the funeral. (I really dislike those hangers-on who show up to funerals who barely knew the person, or who the person actively disliked, and then proceed to treat it as a free drinking session) The non-wrist bands get beer and house wine only 😛
My preferences for my funeral are all arranged. No church. Just in a room at the actual funeral home. Chose my music. Chose to be cremated (which is a 2 hour drive) with instructions that people were NOT to drive to that, but instead, to attend the wake/celebration at a local club.
All that, was now OVER 3 YEARS AGO, and yesterday I celebrated my 40th birthday *gasp*… which I was never expected to get to, least of all to be functioning independently and maintaining good mental/physical abilities.
For some of the more newly diagnosed I'd just like to say, YOUR melanoma path is unique to you- how someone else responds is not necessarily indicative of what lies ahead for you. Please stop transferring the outcomes of other people onto yourselves. You're doing yoursleves a disservice. Let your hope come from within, and your fears as well, rather than using others as a yardstick to measure what is likely to be in your future. We all "what if?" at times, but it seems some don't let go of that thought, and forget to live their lives. (Which is frankly, the reason I don't bother much over here these days. It's too frustrating and it brings me down. NOT the actual stories of people's life events with less than happy outcomes, but the reactions of other people to them.) For me, life is too short and I'm busy living mine and enjoying it too much to bring myself down on here.
What happened to this place?!?!?!?! (And I don't mean the MRF upgrades…)
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- June 10, 2011 at 2:45 pm
Thank you all for making this discussion so vibrant and full of great information. Sherron, and Nic, especially you. You've gone through so much, and it means a lot to hear such first hand, REAL accounts of these things.
But all of you..thank you for all of your input on this topic.
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- June 10, 2011 at 2:45 pm
Thank you all for making this discussion so vibrant and full of great information. Sherron, and Nic, especially you. You've gone through so much, and it means a lot to hear such first hand, REAL accounts of these things.
But all of you..thank you for all of your input on this topic.
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- June 10, 2011 at 11:21 pm
NicOz, you took the first two words out of my mouth! Although we did do wills, etc when my late husband was diagnosed with stage IV, there were so many other things that he did not address. Unfortunately, he was is denial and I was so worried about “being positive” (as I was lectured by his son) that I was too sensitive too bring up and follow through the difficult issues. I am a second wife trying to be fair to his children while his ex is putting on a lot of pressure on me to return all of his “things”…and financial interests to “the family”. What do they think I was to him?!? And I won’t even go into the cremains conflict. Plus I find myself stuck in the middle of their conflicting interests. Ugh! I’ll be ok, though. The point of my rant is that it is important to take care of things that you might not think about in a will. Also, I strongly recommend getting the paperwork handled by a competent attorney. Shop around, it is not necessarily that expensive. As we discussed in my grief support group, “they all come out of the woodwork”. God Bless and live with gusto. Jule -
- June 10, 2011 at 11:21 pm
NicOz, you took the first two words out of my mouth! Although we did do wills, etc when my late husband was diagnosed with stage IV, there were so many other things that he did not address. Unfortunately, he was is denial and I was so worried about “being positive” (as I was lectured by his son) that I was too sensitive too bring up and follow through the difficult issues. I am a second wife trying to be fair to his children while his ex is putting on a lot of pressure on me to return all of his “things”…and financial interests to “the family”. What do they think I was to him?!? And I won’t even go into the cremains conflict. Plus I find myself stuck in the middle of their conflicting interests. Ugh! I’ll be ok, though. The point of my rant is that it is important to take care of things that you might not think about in a will. Also, I strongly recommend getting the paperwork handled by a competent attorney. Shop around, it is not necessarily that expensive. As we discussed in my grief support group, “they all come out of the woodwork”. God Bless and live with gusto. Jule -
- June 11, 2011 at 1:38 am
Our friend, Jeremiah, died from lymphoma last January. We knew he was in denial and had received very poor spiritual counsel. Consequently, he never did believe he would die even when his body was telling him otherwise.
But I just found out today that his denial was so strong that he DIDN'T EVEN SAY GOODBY TO HIS TWO YOUNG DAUGHTERS!
Some of his friends tried to say goodby to him in those last few days and he wouldn't receive it. He just kept saying he would not die.
Even is you don't get around to the legal, practical stuff….. get your affairs in order with your family. Love your family and friends enough to say goodby. For your sake but also for theirs.
Nicki, Stage 3b
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- June 11, 2011 at 1:38 am
Our friend, Jeremiah, died from lymphoma last January. We knew he was in denial and had received very poor spiritual counsel. Consequently, he never did believe he would die even when his body was telling him otherwise.
But I just found out today that his denial was so strong that he DIDN'T EVEN SAY GOODBY TO HIS TWO YOUNG DAUGHTERS!
Some of his friends tried to say goodby to him in those last few days and he wouldn't receive it. He just kept saying he would not die.
Even is you don't get around to the legal, practical stuff….. get your affairs in order with your family. Love your family and friends enough to say goodby. For your sake but also for theirs.
Nicki, Stage 3b
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- June 11, 2011 at 9:27 am
Thank you Dian. I am stage III melanoma and I also work in the area of Wills and Estates. I see everyday the pain caused to the ones left behind with the infighting, miscommunication and mess that they have to clean up after the death of a loved one who hasn't taken those steps. I more than most understand how important it is to put your affairs in order whether you have an illness or not. Why put your family through more pain after your death by not having a Will and communicating with your loved ones what you wish after your death. It would save alot of unnecessary legal bills and stress for your family and talking about and communicating honestly with them will save alot of problems and cost. We are all going to die one day whether melanoma takes us or not. Being in a positive frame of mind I believe is the best thing you can do for yourself but also being practical with your affairs and knowing that your family will be better off by your planning and giving you that psychological boost that they will be ok is the best gift you can give to yourself and them. I have my affairs in order and this gives me alot of comfort knowing my loved ones will be taken care of even if I believe I'll still be posting on this board until I'm 100 years old.
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- June 11, 2011 at 9:27 am
Thank you Dian. I am stage III melanoma and I also work in the area of Wills and Estates. I see everyday the pain caused to the ones left behind with the infighting, miscommunication and mess that they have to clean up after the death of a loved one who hasn't taken those steps. I more than most understand how important it is to put your affairs in order whether you have an illness or not. Why put your family through more pain after your death by not having a Will and communicating with your loved ones what you wish after your death. It would save alot of unnecessary legal bills and stress for your family and talking about and communicating honestly with them will save alot of problems and cost. We are all going to die one day whether melanoma takes us or not. Being in a positive frame of mind I believe is the best thing you can do for yourself but also being practical with your affairs and knowing that your family will be better off by your planning and giving you that psychological boost that they will be ok is the best gift you can give to yourself and them. I have my affairs in order and this gives me alot of comfort knowing my loved ones will be taken care of even if I believe I'll still be posting on this board until I'm 100 years old.
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- June 11, 2011 at 10:41 am
Di, This is a great item. I hve long told especially stage I
V patients that the first thing they should do is to make sure their significant other gained the information they would lneed to live with the patient gone. Some people thought that I was weird to mention such a thing to a new patient, but knowing the speed at with Melanoma can move, I have always believed it to be essential advice. I then note that the second step (can be done semi-concurrently) is to learn as much as bothy parties can to improve the odds that the caregiver will not have to use all the newly gained info. Some go within two weeks of diagnosis. As NicOz pointed out so well, one never knows. Nic, Great to hear that 40th! -
- June 11, 2011 at 10:41 am
Di, This is a great item. I hve long told especially stage I
V patients that the first thing they should do is to make sure their significant other gained the information they would lneed to live with the patient gone. Some people thought that I was weird to mention such a thing to a new patient, but knowing the speed at with Melanoma can move, I have always believed it to be essential advice. I then note that the second step (can be done semi-concurrently) is to learn as much as bothy parties can to improve the odds that the caregiver will not have to use all the newly gained info. Some go within two weeks of diagnosis. As NicOz pointed out so well, one never knows. Nic, Great to hear that 40th!
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