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#1 pawndy

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Posted 09 October 2010 - 06:28 AM

When is it a good time to do a living will? I keep thinking I should do a living will. Then, I begin to think there is so much research being done that someone will discover a cure one day too late for me. I know this sounds crazy but medicine is discovering new treatments every day.

I have scleroderma in my lungs, intestines, and now my liver. So, I am thinking it is time for me to make a decision.
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#2 Shelley Ensz

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Posted 09 October 2010 - 07:22 AM

Hi Pawndy,

In my opinion, which may be wrong (if often is!), the best time to do a Living Will is when you're 18 years old, because as soon as you're of legal age, you should be making decisions regarding what happens when you pass away. If only to reduce a few of the arguments among family members over who gets what.

The other best times to do it is when you're feeling healthy, and when you are sick. Once it arises to your consciousness, it is certainly time to use the concern to your advantage and take immediate action!

We did a do-it-yourself Living Will (software for it is cheap) and then took it to an estate lawyer to review. That step is critical, because he found one word which would have made our will illegal in this state so it was worth every penny and we saved hundreds by doing it this way. And it was much easier than it sounds, too. I recommend setting yourself a deadline (bad word) for it, such as December 1st; then you are all set before the busy holidays.

I'm also big on funeral planning. Ideally, I think it should be done when we're entirely healthy, but lacking that, again we should do it as soon as it comes to our awareness. And it doesn't have to be a sad thing! I went with a relative who has a great sense of humor, and we had a blast picking out flattering casket lining covers and discussing songs. I'd love to have "Jeremiah was a bull frog" at my final event, but the idea seemed to raise a few eyebrows, so I had to settle for something more traditional and tame. But if you want Jeremiah, now is the time to speak up, or your relatives -- probably one that you most despise and who has the opposite taste you do! -- could easily ruin the whole thing. Not that you'd particularly care at that point, eh?

But the reason I think it is so very important is because of the enormous flood of relief you'll feel as soon as you have accomplished these things! It's like a huge weight off your shoulders, even though you had no idea you were carrying the weight around. Maybe we all carry a certain silent guilt, knowing we should be prepared for the inevitable, and guilt because we keep procrastinating and shrugging it off. For me, it was because of fear that it would be a terribly rough emotional scene to wade through. So was I ever surprised to find that, bringing the right attitude into it (a bit daring as decisions just plain have to be made, tossed with a big hunk of sick humor), why it was really a marvelous thing.

And it is ironic as I credit it for releasing a lot of stress. Now when either of us are sick, instead of worrying to pieces about what would happen "if", I don't even have to give it a moment's attention, and can stay in the present, focusing on happiness, instead of worrying about the future.

A Living Will entails many more things than most people think. It defines a division of the estate (remember your favorite charities there, like the International Scleroderma Network, of course), plus assigns people to make decisions when you're not able, and lets them know what you want. For example, how long would you like to be on life support if you were brain dead? For the questions you really don't know the answer to, just make ANY decision to get the paperwork done. You can always change your mind in the future!

And hopefully that will be a nice, long, pleasant future, which is worry-free on the matter of estate planning! Here are some flowers just for you having the courage to think about it, and discuss it.
:flowers:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 enjoytheride

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Posted 09 October 2010 - 09:02 AM

Pawndy- this was a great thing to bring up. I have been thinking about it a lot and would love to hear other peoples' ideas of what should be included.

#4 Jeannie McClelland

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Posted 09 October 2010 - 05:54 PM

It is a great topic!

OK, I did mine before I went into hospital for surgery several years ago. In the USA, there is a form called "Five Wishes" which is a legal living will in 42 states, available for a nominal fee online ($5, I think) or free from most hospitals. To quote from their website, Five Wishes lets your family and doctors know:
  • Who you want to make health care decisions for you when you can't make them.
  • The kind of medical treatment you want or don't want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.
It's not a full-blown will in that it doesn't make provision for disposal of assets or bequests, etc., but it covers the things related to medical care and end-of-life decisions. I did mine partly because I wanted the doctors and hospital to have my wishes known if the surgery went badly, but mostly because I didn't want my family to have the emotional upheaval of having to make difficult decisions.

While I found thinking about some of the things a little upsetting, it really was a relief once it was done.

One thing to remember though, is that people have to know you have a living will (or any other kind), that doctors and hospitals will need a copy, and your family needs to know where to find it. Also if you wish to change or revoke any will, you should make it plain that it supersedes any previous will and retrieve old copies and provide new ones anywhere you have lodged a copy.

Warm wishes,
Jeannie McClelland
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#5 miocean

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Posted 10 October 2010 - 03:49 AM

I know most people don't want to think about dying but I have always been realistic about the inevitable. When my mother was dying of cancer (it was a long, slow process) my sister and I made all the arrangements, picked out casket and flowers, and talked with her about what she wanted to be buried in. She insisted upon wearing her wig and SHOES! She told us what dress she wanted to wear and although cancer ravaged her body, she looked beautiful (I never thought I would say that about a dead person!) She asked for a specific person from her church to sing a specific song. We wouldn't have known any of these things if we hadn't been up front with her about it. And it took a lot of the stress out of the process after she died, no running around for things or making the arrangements then.

Years ago, in the late 90's before scleroderma, a lump was found on my breast. I opted for a "new" procedure then, a stereotactic biopsy rather than a lumpectomy. It was done with needles using the same technology as a mammogram. The hospital I had it done at required a living will, so I made one up then. Thankfully, it was just a cystic lump. I lost that living will so downloaded one from the internet but mine only includes things about life support. I try to remember to carry one with me to hospitals, dialysis had it on file, and my husband know where to find it. You just made me decide to carry one with me with my medical information (drugs, doctors, contacts, conditions). We also made up wills about 10 years ago, which we are going to revise soon. I will have my lawyer check into a new living will that is more inclusive. I didn't realize certain things were required by different states.

In a time of crisis, that is enough of a burden on your loved ones, yet alone to have to make decisions and make arrangements. I remember reading posts about Peanut and how she was preparing for her death by making a presentation to be played at her service and was realistic about it. I know this sounds silly, but I would like to make a multimedia presentation celebrating my life and have Ozzie Osborne's "See You On The Other Side" played. No one knows about this but us now. My husband knows I want to be cremated.

I'm interested in others' thoughts about this. We are all suffering from a chronic illness which makes death more of a reality as much as we might not want to admit it. May we all live long and not suffer.

miocean
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#6 Amanda Thorpe

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Posted 11 October 2010 - 03:14 AM

I went out with my sister a few weeks ago and over coffee she wanted to confirm that I wanted my funeral to be a joyful occasion. I confirmed that I wanted everyone to be laughing, having a good time and no one wearing black. I guess I should think about making things official.

Take care.
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#7 Shelley Ensz

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Posted 11 October 2010 - 04:41 AM

In that case, Amanda, you might want to consider my "Jeremiah was a bullfrog" submission for your final send-off. :blush:

Just because we have scleroderma doesn't necessarily mean we are going to die of it, either; we could just as easily crash with a pickle truck and a chicken truck tomorrow, and end up as pickled eggs.

So, when your sister asked about your wishes, you could have also asked about hers, too, because, like as not, it could be her before you. You also bring up an excellent point that some of us want a somber send-off, some want a joyful one, and others want to follow certain religious rites. One of my relatives requested no service at all, just that people have a cup of coffee, wherever they were, and reminisced about old times.

Planning a funeral isn't like giving up, or a sign of hopelessness. I found it actually lifted my spirits, made me feel more comfortable and better prepared, and got me thinking a lot more in terms of living happily right this very minute. And it's surprising how open most of us are to discussing our final wishes, if we are just asked. Same thing with the Living Will which started this thread, and which I mistook as Living Trust. I am having a bad reading week <sigh>.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 Jeannie McClelland

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Posted 11 October 2010 - 05:26 AM

My grandmother decided she didn't want to miss out on all the fun at her funeral and wake, so she held an advance one, complete with all the religious rites, and then threw a party! When it came to the real thing, we had a lot of laughs from the 'rehearsal' and it really was a joyous and loving occasion. And we could all remember her sitting tall and proud in her big wing chair, looking like a queen and having a blast. Way to go, Bonne Maman!
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#9 Joelf

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Posted 11 October 2010 - 08:15 AM

Hi All

Even before my diagnosis of Scleroderma I had already decided that my funeral would resemble "The Last Night Of The Proms" as I was going to have "Land Of Hope & Glory", "Rule Britannia" & "Jerusalem" played at it!! ;) :VeryHappy:

Jeannie, I love the idea of attending my own funeral; why should anyone miss out on a good party just because they're dead?!! :lol: :lol:

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#10 Amanda Thorpe

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Posted 11 October 2010 - 08:32 AM

Sorry I didn't mean to come across as if I am going to peg out at any moment! Mind you my sister is now convinced she will out live me and it's become subject to the competition between twins thing. She asserts she will outlive me and therefore win the "twin who lives longest competition" and I assert I will peg out first therefore winning the "twin who finds out first what's next competition". Pathetic eh?

I love the idea of attending my own funeral, people would just have to say wonderful things about me and I want gifts...oh yes people gifts! This could be the next big thing! :emoticons-yes:

Take care.
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#11 Shelley Ensz

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Posted 11 October 2010 - 10:06 AM

Well, as for me, I think I'm going to die laughing if this thread keeps up in this vein! :lol:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 judyt

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Posted 11 October 2010 - 09:06 PM

Hi everybody,
It is very interesting reading all your comments and ideas and it certainly has brought up more ideas than one person can usually dream up!!

I have had some quite definite ideas which I have communicated to our daughter since she is most likely to be the one left behind.

I have had more experience with long slow deaths and the ensuing funeral than I would wish to have had. My Dad died of cancer when I was 39, my Mum lingered for 2 years after a major stroke and died a month before I turned 50 then my younger sister suffered for about 3 years before succumbing to cancer at 47 (I was 53 by then). So I thought I had been down that road enough times to say to our daughter that when it comes to my turn "I won't't be there so you just do whatever feels right for you".

The major factor in this decision was that my sister was quite strongly religious/spiritual and was quite forceful when it came to organising what to do for each of our parents and between us we did agree what we wanted to do and be done and as far as I thought we were all happy with the result. Foolishly I imagined the same would happen for her and was already having thoughts about what I would like to do, when I was informed by her Priest that the whole funeral had been planned and organised. There was, however, one spot in the service where I could speak. Now, she knew that I was never one to speak at these occasions, so that was not going to happen. She was a schoolteacher at a Convent school so the whole school was involved and to me it was a staged performance which I was forced to sit through. I was not even able to socialise afterwards and thank people for coming because I was whisked off to the burial site and by the time we got back almost everybody had gone home. This did not happen with our parents, we held the cremation or burial part after having some time with our guests.

So what I am trying to say is that being too forward thinking can in fact be hurtful to those left behind. I must say though, that I could almost agree with having a "Living Funeral" in advance
and enjoy seeing everybody who wanted to come.

This has been a very interesting discussion and I look forward to hearing more opinions from others.

Best wishes from Judyt

#13 Sweet

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Posted 14 October 2010 - 01:43 AM

In my opinion, everyone should have one, and should obtain this at age 18. I'm a nurse, and worked ER for years. I saw a lot of sad, sad, moments with family members not sure what to do about their loved one when in a pinch. I'm positive that one day there will be a cure for scleroderma, but it might be some other issue that lands you in a situation where you're family is forced to make decisions. Talk with your doctor about it. Most clinics have a standard packet for the state you live in. :flowers:
Warm and gentle hugs,

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#14 debonair susie

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Posted 14 October 2010 - 07:37 AM

To me, this is much too important a subject for me NOT to put my 2 cents in, so here goes.

We all have had our thoughts feelings and experiences, where loved ones are concerned.

My husband's ex'wife, he and I all had a very good relationship, after a time of healing took
place between the two of them. So, while she was ill for some time with TTP (Thrombocytopenia Purpura), we were an ever presence while she was in the hospital, the nursing home and lastly, in the hospital where she passed away...with my husband (holding her hand) on one side of her and I on the other.

When she was first sick, she paid for her funeral. She wrote down every little detail she wanted...for her funeral. She chose the music and even asked that everyone attending the funeral wear hawaiian shirts, which was done and those of us with hawaiian print dresses wore those...(Leis were given to anyone who wanted to wear one).

I was so proud of her for having done that, as I felt it would have been a great hardship on her (adult) children to endure the process after her passing. She was very selfless in doing what she did.

My daughter asked quite some time ago, that I put down, in writing, my wishes.
This all works, in many cases, but flexibility sometimes, must be considered too.
It's all what works. What may be perfect for one family, may not be for another.
At any rate, most of us know our family members well enough to decide whether...or not, they would be able to handle making funeral arrangements, etc. Where my husband's children and grands and my children are concerned, we know.
Special Hugs,

Susie Kraft
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#15 miocean

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Posted 13 January 2011 - 02:43 AM

Back to this subject, again. We are revising our legal papers and are drawing up new will, creating new power of attorney's and updating our living wills. My husband didn't have one so his is being drawn up.

Things you might want to know to handle your affairs:

Last will and testament: this divides your estate as you see fit. We tried to make it so changes will not have to be made for a long time, making each other the beneficiary. Not having any children, we have made plans should something happen to both of us at once, and have planned for things if something happens to one of those people included in our will before our deaths. On these papers you appoint an executrix to handle your estate, we also appointed a substitute executor in case something happened to both of us. We did not include the division of personal property in these papers on the advice of our lawyer. He said to make a list of items and who should get them and attach it. You have to trust you executor to do as you wish, which we do. This keeps the value of your estate down for tax purposes and also makes it unnecessary to make a new will if you change your mind or want to add something. A codicil can always be added at a later time instead of re-writing the entire thing.

General Power Of Attorney::this give legal power to someone else if you are unable to do things for yourself. It gives them the right to write checks, sell property, have access to your accounts, file your taxes, use your credit cards,make gifts, have access to your health records, make medical arrangements, hire and fire doctors (love that one!) take care of your funeral and organ donations (not that they'd want any of mine!) Again, we made each other POA with an alternate. This has to be someone you trust because they control everything should you become incapable of making decisions. They can institutionalize you and sell everything you own. Basically, they are in control of you and all your assets.

Living Will: this determines what will be done should you have an incurable injury, disease, or illness regarded as terminal. It includes organ donation and life saving procedures.. It appoints a health care representative and, again, an alternate should be selected.

This is costing us around $300 (we are in the U.S., NJ) so you want to make sure it is not going to change frequently and that all parties involved are in agreement. Our alternate is "honored" that he has been chosen. We are trying to make it as easy on him as we can by being organized. It also depends on the amount of your assets in the detail you go into in these papers. You should have several copies of each made up and carry your living will with you at all times, as well as placing copies in your doctor's files.The executor should know where copies can be found of all your papers.

As I mentioned, we are doing a separate attachment for our possessions, not putting them directly in the will. My husband has a vintage surfboard and his nephew is a surfer and would probably love to have it. I asked what he wanted to do with it. He said " auction it off to the highest bidder and give half to ISN and half to Dream Factory of the Jersey Shore. " He knows how much both these organizations have helped me and how much they mean to me. It never occurred to me to do anything like that. He's a great guy! I will make it known that I want to donations at the time of my death to go to these two organizations

It might not occur to you to think of a gift to ISN when making up your will or to ask for donations to be made in your name at the time of your death. It didn't occur to me until now.

Not really happy thoughts, but realistic, especially for us as we have an incurable disease. And you really don't want to leave a mess for your loved ones or not have things handled the way you want them to be. Personally, having done everything to the extreme, I want to go out the same way! I want people to celebrate my life and "I'll See You On The Other Side."

Forever,
miocean

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#16 Shelley Ensz

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Posted 13 January 2011 - 02:57 PM

Hi Miocean,

I'm thrilled with you and your husband's thoughtfulness for including the nonprofit International Scleroderma Network in your estate giving plan! I just really hope we don't see that thoughtful donation for many years to come.

If others would like to include the ISN in their estate planning, here is the information to use. It is very important to specify the exact organization, along with their address and contact information, and not just the general cause to be supported because it clarifies your wishes. I've had several families call me to let me know they made a mistake and sent all the funds from the estate to another scleroderma organization instead, and then discovered too late that their loved one was only involved in our organization and wanted the money to go to us. There's nothing that can be done in cases like that, because once a donation is given, it cannot be recalled, or "ungiven". So just putting "scleroderma" in estate planning isn't enough. If you love the ISN, like we do, here's what you'd want to specify:

International Scleroderma Network
7455 France Ave S #266
Edina, MN 55435
Toll Free: 1-800-564-7099
www.sclero.org

We are a full service nonprofit agency and every donation is distributed to equal portions for tackling our four-prong mission of scleroderma research, support, education and awareness. We are the world leader in this field, and use donations so wisely and efficiently (and rely on volunteers so heavily) that we even have no offices and no employees. So your funds go directly to support vital programs, most effectively! You can't do better for leaving a lasting legacy for a worthwhile cause.

Thank you for your generosity, Miocean, and for your encouragement for others to do the same with their estate planning. We all deeply appreciate it!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#17 miocean

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Posted 13 January 2011 - 05:17 PM

I made that mistake. I donated to a different scleroderma organization for years, not realizing that that it wasn't the one I used daily. Although it also does a lot for scleroderma, it has much higher expenses and budget and I'd rather give to ISN.

miocean
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