My Mom won't be around forever... preparation help.
November 30, 2009 2:18 PM
My mom was diagnosed with Small-Cell Lung Cancer about a month ago. Her prognosis is not so good... her doctor is estimating one to two years with chemo. Last night, my mom and siblings got together to discuss her wishes, wills, money, etc. Unfortunately, there are still issues that were left unresolved. In fact, I feel like we left with more questions than answers.
The biggest issue that she's having a hard time deciding is what to do with her money. She was working full-time up until a few months ago when she was laid off. Work has been immensly stressful for her for the past several years. I tried many many times to get her to find something else or just stop working so much. But, she's very stubborn, and just doesn't think of herself first. I believe the stress caused the cancer, because she's not even a smoker. Anyway, my point is that she has very little income now, but managed to build up a small savings. She was contemplating using most of the money to pay into her mortgage so that she can stop paying PMI. Another reason is that she believes that by not having that money in her bank account will allow her to qualify for assistance. This is where we're kind of unsure of how it really works. I can't imagine such a loophole would exist. My siblings and I believe she should hang on to the money and use it to make her life as comfortable and stress-free as possible. But, I can understand that she wouldn't want it all sucked away by medical bills either. She isn't rich, and neither is the rest of our family, so we want to make the best financial decisions possible. I'm not sure who we can ask about this without making it obvious that we're looking for a loophole. Let me stress that she's not looking to commit fraud here, but just a way to maximize her benefits in a legal way.
So, some questions I have...
1) Should she hang on to her savings to use for living expenses, or use it to pay mortgage and remove PMI monthly payments, and possibly allow her to qualify for assistance? My thinking here is that cash is king, so hang on to it. But, would like some opinions.
2) She wishes to be cremated, and does not want a big funeral service. (She has very few friends around and only immediate family). What costs should we budget for or expect from a cremation and maybe a small funeral service?
3) Since she wants to live in her current home, what's the best way to deal with selling it? We don't know exactly how long she has, and even if we did, we don't know how fast her house would sell. My first thought is to deal with it after she passes away, so that she can be as comfortable as possible. But, not only does she worry about the burden of us selling it, but I have to admit that it worries me too in this economy. I certainly can't afford two mortgages and either can my siblings.
4) More specific to her type of cancer, what can I expect her quality of life after chemo and in the end? I assume that after her chemo (I believe 6 months of it), that she will begin to regain strength and will have a more or less normal life. But, I know the cancer will eventually catch up with her. What happens then? Is it sudden? Is it months of pain and suffering? Will she need 24/7 care? What will she not be able to do on her own?
5) I was thinking that we'd use a website like legal zoom to handle a will and living will. I hope that she can avoid paying a lawyer $400/hr for this and any other advice that we can find elsewhere. Is it a bad idea to not involve a lawyer?
6) Also, maybe a dumb question, but why can't they simply continue chemo when it does eventually come back?
The biggest issue that she's having a hard time deciding is what to do with her money. She was working full-time up until a few months ago when she was laid off. Work has been immensly stressful for her for the past several years. I tried many many times to get her to find something else or just stop working so much. But, she's very stubborn, and just doesn't think of herself first. I believe the stress caused the cancer, because she's not even a smoker. Anyway, my point is that she has very little income now, but managed to build up a small savings. She was contemplating using most of the money to pay into her mortgage so that she can stop paying PMI. Another reason is that she believes that by not having that money in her bank account will allow her to qualify for assistance. This is where we're kind of unsure of how it really works. I can't imagine such a loophole would exist. My siblings and I believe she should hang on to the money and use it to make her life as comfortable and stress-free as possible. But, I can understand that she wouldn't want it all sucked away by medical bills either. She isn't rich, and neither is the rest of our family, so we want to make the best financial decisions possible. I'm not sure who we can ask about this without making it obvious that we're looking for a loophole. Let me stress that she's not looking to commit fraud here, but just a way to maximize her benefits in a legal way.
So, some questions I have...
1) Should she hang on to her savings to use for living expenses, or use it to pay mortgage and remove PMI monthly payments, and possibly allow her to qualify for assistance? My thinking here is that cash is king, so hang on to it. But, would like some opinions.
2) She wishes to be cremated, and does not want a big funeral service. (She has very few friends around and only immediate family). What costs should we budget for or expect from a cremation and maybe a small funeral service?
3) Since she wants to live in her current home, what's the best way to deal with selling it? We don't know exactly how long she has, and even if we did, we don't know how fast her house would sell. My first thought is to deal with it after she passes away, so that she can be as comfortable as possible. But, not only does she worry about the burden of us selling it, but I have to admit that it worries me too in this economy. I certainly can't afford two mortgages and either can my siblings.
4) More specific to her type of cancer, what can I expect her quality of life after chemo and in the end? I assume that after her chemo (I believe 6 months of it), that she will begin to regain strength and will have a more or less normal life. But, I know the cancer will eventually catch up with her. What happens then? Is it sudden? Is it months of pain and suffering? Will she need 24/7 care? What will she not be able to do on her own?
5) I was thinking that we'd use a website like legal zoom to handle a will and living will. I hope that she can avoid paying a lawyer $400/hr for this and any other advice that we can find elsewhere. Is it a bad idea to not involve a lawyer?
6) Also, maybe a dumb question, but why can't they simply continue chemo when it does eventually come back?
I'm sorry for your mom and your family.
You have a lot of questions. Here are some thoughts. I am not a lawyer. My mother did die of cancer recently.
1. I think for the financial stuff it might make sense to find a financial planner. If she used up all her cash, how will she pay her mortgage? I'm not clear on what kind of assistance she thinks she will be eligible for. There are a LOT of questions a professional would be able to help you with.
2. The cost of cremation will depend on where you are. As I said, my mom just died, the cremation + service was about $2000 including incidentals, and I also spent a few hundred on food for the reception that I had at her home.
3. You and your siblings would not be liable for the mortgage, it would be a liability of the estate. However depending on how much equity she has in the home (probably not a lot, given that she is paying PMI) you may want to be able to pull out that equity. That would only be doable if you could sell the house, which may or may not be possible in a short time. Again, a financial planner would be able to help you crunch some of the numbers. But regardless unless you are on the mortgage you will not be liable for the debt on the house. It will encumber the estate, and the house would go into the estate. The probate process would go on. Although you don't want to pay a lawyer it sounds to me like it would be worth some money for your mom to meet with one. I think $400/ hour is probably quite high. There are small firms that charge much, much less. Ask around for a referral.
4. These questions are nearly impossible to answer. Depending on the type of chemo, and her response to it, she may not experience terrible debilitating side effects during the treatment; or she may. She may recover well from the chemo, or not. Depending on whether it is effective in eradicating the cancer (it sounds like this is a primary, not metastatic disease) she could recover fully for a time. How would it take until it comes back? Impossible to predict. You can look at the odds, but that won't tell you what will happen to your mom. You should probably talk to the doctor about this. Also, ACOR has listserves for different cancer types where you could get more anecdotal evidence and advice on how to research.
5. See above. A lawyer is probably a good idea.
6. Possibly. It depends on the prognosis, metastatic site, treatment options... there are a ton of variables.
Good luck. I know how hard all of this is.
posted by miss tea at 2:30 PM on November 30, 2009
You have a lot of questions. Here are some thoughts. I am not a lawyer. My mother did die of cancer recently.
1. I think for the financial stuff it might make sense to find a financial planner. If she used up all her cash, how will she pay her mortgage? I'm not clear on what kind of assistance she thinks she will be eligible for. There are a LOT of questions a professional would be able to help you with.
2. The cost of cremation will depend on where you are. As I said, my mom just died, the cremation + service was about $2000 including incidentals, and I also spent a few hundred on food for the reception that I had at her home.
3. You and your siblings would not be liable for the mortgage, it would be a liability of the estate. However depending on how much equity she has in the home (probably not a lot, given that she is paying PMI) you may want to be able to pull out that equity. That would only be doable if you could sell the house, which may or may not be possible in a short time. Again, a financial planner would be able to help you crunch some of the numbers. But regardless unless you are on the mortgage you will not be liable for the debt on the house. It will encumber the estate, and the house would go into the estate. The probate process would go on. Although you don't want to pay a lawyer it sounds to me like it would be worth some money for your mom to meet with one. I think $400/ hour is probably quite high. There are small firms that charge much, much less. Ask around for a referral.
4. These questions are nearly impossible to answer. Depending on the type of chemo, and her response to it, she may not experience terrible debilitating side effects during the treatment; or she may. She may recover well from the chemo, or not. Depending on whether it is effective in eradicating the cancer (it sounds like this is a primary, not metastatic disease) she could recover fully for a time. How would it take until it comes back? Impossible to predict. You can look at the odds, but that won't tell you what will happen to your mom. You should probably talk to the doctor about this. Also, ACOR has listserves for different cancer types where you could get more anecdotal evidence and advice on how to research.
5. See above. A lawyer is probably a good idea.
6. Possibly. It depends on the prognosis, metastatic site, treatment options... there are a ton of variables.
Good luck. I know how hard all of this is.
posted by miss tea at 2:30 PM on November 30, 2009
I would talk to an estate attorney just to get a feel for what the options are, even if it's just an initial meeting to determine you don't need that level of expertise. I think it will be money well spent.
posted by iamabot at 2:36 PM on November 30, 2009
posted by iamabot at 2:36 PM on November 30, 2009
I'm sorry about your Mom. My Mom also got diagnosed with lung cancer a few years ago and went through lung resection surgery, radiation and chemo. She is now as okay as you can be for having state four lung cancer. I've had some of the same questions as you as far as health goes. I can't speak to the money stuff because your mom's situation is totally different from mine. I do want to say that a lot of the life expectancy stuff they've been giving people for lung cancer [according to my mom's doc, not me being all "bla bla I read on wikiepdia..."] are out of wack because a lot of advances in chemistry mean that people are living longer and better, even with totally terrible cancers.
My mom got a very scary-short live expectancy diagnosis and she's now on some medicine that has made her able to be fine, healthy and okay despite this. I've seen people go the other way too. My Mom was never sick [i.e. the cancer got detected before it was affecting her health] so this has been very bewildering at some level.
So, you asked a few questions that I've had some experience with. I'll deal with the easiest first.
6) Also, maybe a dumb question, but why can't they simply continue chemo when it does eventually come back?
The big deal is that chemo itself is quite toxic. To oversimplify, the things that make it kill cancer are also hard on your body. So often what happens is that people become unable to tolerate side effects [my mom was on one medicine that made her feet number for example, and another that gave her a rash] or the drugs make them so sick that it's not really a decent option. Usually chemo starts with more tolerable drugs and once those are no longer tolerated, move to more difficult drugs.
4) More specific to her type of cancer, what can I expect her quality of life after chemo and in the end? I assume that after her chemo (I believe 6 months of it), that she will begin to regain strength and will have a more or less normal life. But, I know the cancer will eventually catch up with her. What happens then? Is it sudden? Is it months of pain and suffering? Will she need 24/7 care? What will she not be able to do on her own?
I'm not sure who is around and available to help but chemo is very exhausting. There's not just the drugs which usually make you sick, but also the endless streams of rides, hanging out with other sick people, medical personnel and paperwork and decisions that need to be made. I suggest that your mom [and perhaps you] join a support group because sometimes it's nice to have people in the same boat to bitch to and hang out with. It's been really useful for my Mom. Chemo is scary for a family member because your family member looks hellish and feels terrible and has no energy and it's easy to see that as the cancer killing them and not the effects of the chemo. I can't speak to the rest of this particular question.
I believe the stress caused the cancer, because she's not even a smoker.
And lastly, I know you mean well and this may just be you talking on the website, but one of the things that is really difficult for people with cancer is feeling that something they did caused it. I mean we know the correlation between smoking and cancer as well as a lot of other lifestyle choice things, but I'd strongly suggest keeping this speculation to yourself. One of the things that has been terribly hard for my mom is all the well-meaning people who either comfort themselves by saying 'well you DID smoke...' or trying to pressure her to go all-macrobiotic or all-organic or make dramatic lifestyle changes that they are convined would make her cancer go away. I think it's a natural path for smart people to take to try to figure it all out, but it's more useful to try to be supportive and help solve problems than to look backwards to try to undo things that can't be undone. I am sorry for all this bad news, I know it isn't easy.
posted by jessamyn at 3:09 PM on November 30, 2009
My mom got a very scary-short live expectancy diagnosis and she's now on some medicine that has made her able to be fine, healthy and okay despite this. I've seen people go the other way too. My Mom was never sick [i.e. the cancer got detected before it was affecting her health] so this has been very bewildering at some level.
So, you asked a few questions that I've had some experience with. I'll deal with the easiest first.
6) Also, maybe a dumb question, but why can't they simply continue chemo when it does eventually come back?
The big deal is that chemo itself is quite toxic. To oversimplify, the things that make it kill cancer are also hard on your body. So often what happens is that people become unable to tolerate side effects [my mom was on one medicine that made her feet number for example, and another that gave her a rash] or the drugs make them so sick that it's not really a decent option. Usually chemo starts with more tolerable drugs and once those are no longer tolerated, move to more difficult drugs.
4) More specific to her type of cancer, what can I expect her quality of life after chemo and in the end? I assume that after her chemo (I believe 6 months of it), that she will begin to regain strength and will have a more or less normal life. But, I know the cancer will eventually catch up with her. What happens then? Is it sudden? Is it months of pain and suffering? Will she need 24/7 care? What will she not be able to do on her own?
I'm not sure who is around and available to help but chemo is very exhausting. There's not just the drugs which usually make you sick, but also the endless streams of rides, hanging out with other sick people, medical personnel and paperwork and decisions that need to be made. I suggest that your mom [and perhaps you] join a support group because sometimes it's nice to have people in the same boat to bitch to and hang out with. It's been really useful for my Mom. Chemo is scary for a family member because your family member looks hellish and feels terrible and has no energy and it's easy to see that as the cancer killing them and not the effects of the chemo. I can't speak to the rest of this particular question.
I believe the stress caused the cancer, because she's not even a smoker.
And lastly, I know you mean well and this may just be you talking on the website, but one of the things that is really difficult for people with cancer is feeling that something they did caused it. I mean we know the correlation between smoking and cancer as well as a lot of other lifestyle choice things, but I'd strongly suggest keeping this speculation to yourself. One of the things that has been terribly hard for my mom is all the well-meaning people who either comfort themselves by saying 'well you DID smoke...' or trying to pressure her to go all-macrobiotic or all-organic or make dramatic lifestyle changes that they are convined would make her cancer go away. I think it's a natural path for smart people to take to try to figure it all out, but it's more useful to try to be supportive and help solve problems than to look backwards to try to undo things that can't be undone. I am sorry for all this bad news, I know it isn't easy.
posted by jessamyn at 3:09 PM on November 30, 2009
So sorry you are going through this, although it seems like you have your head and your heart in the right place about dealing with this responsibly and well in advance.
A recommendation I have is to pre-pay a funeral. Even if she has 10 years left in her, that is one thing you don't have to think about when the time comes. My parents did this for their respective parents, both of whom went into assisted living and then nursing homes late in life, and pretty much used up the proceeds of their house sales in the process. (Once my grandma ran out of money from the sale of her house, she went on Medicaid for her nursing home care.) Having this paid for a funeral in advance ensures that you do not have to shoulder a majority of this financial burden later on.
With regards to the house - would it be possible for you to help your mother to go through her possessions, to ensure that keepsakes such as family photos and heirloom items end up properly preserved and in the right hands? Especially with regards to photos, make sure you figure out the people in the photos while she is still around, and consider scanning the photos for permanent preservation (see here and here) Start uncluttering and selling or donating unused furniture and household items now. Are there home improvement projects you can already tackle that will make things easier once the house is on the market? (painting, replacing carpet in unused rooms, tackling a larger bathroom or kitchen update/remodel, etc) Hopefully when you do finally put the house up for sale, you will have a majority of the remodeling projects completed and the housing market will have turned around a bit.
posted by sararah at 3:25 PM on November 30, 2009
A recommendation I have is to pre-pay a funeral. Even if she has 10 years left in her, that is one thing you don't have to think about when the time comes. My parents did this for their respective parents, both of whom went into assisted living and then nursing homes late in life, and pretty much used up the proceeds of their house sales in the process. (Once my grandma ran out of money from the sale of her house, she went on Medicaid for her nursing home care.) Having this paid for a funeral in advance ensures that you do not have to shoulder a majority of this financial burden later on.
With regards to the house - would it be possible for you to help your mother to go through her possessions, to ensure that keepsakes such as family photos and heirloom items end up properly preserved and in the right hands? Especially with regards to photos, make sure you figure out the people in the photos while she is still around, and consider scanning the photos for permanent preservation (see here and here) Start uncluttering and selling or donating unused furniture and household items now. Are there home improvement projects you can already tackle that will make things easier once the house is on the market? (painting, replacing carpet in unused rooms, tackling a larger bathroom or kitchen update/remodel, etc) Hopefully when you do finally put the house up for sale, you will have a majority of the remodeling projects completed and the housing market will have turned around a bit.
posted by sararah at 3:25 PM on November 30, 2009
None of these things have to be decided tomorrow. Believe me, I understand the appeal of leaping into action instead of ruminating on all this, but I really recommend just sitting with this for awhile, and maybe even making an appointment with a therapist or someone to talk things over.
This is huge stuff and jumping directly into logistics often ends up being more stressful for everyone, especially your mom, (who not only has to deal with her own grief and shock, but her family's too.)
posted by small_ruminant at 3:38 PM on November 30, 2009
This is huge stuff and jumping directly into logistics often ends up being more stressful for everyone, especially your mom, (who not only has to deal with her own grief and shock, but her family's too.)
posted by small_ruminant at 3:38 PM on November 30, 2009
Stress does not cause cancer.
that said, my brother died a very short while ago and I can tell you this: cremation costs will vary from state to state, and funeral homes get a lot more for what they claim to do than the additional charge for the cremation itself. In sum: you might have to call a few places. I was told by one place (the state next to mine) that I would have to come there and sign papers. Another place told me I would have to view the body and identify it. Finally, I found a place that expressed the papers to sign, and I paid via charge card over phone. Not pleasant when you are emotionally involved in such things, of course.
Get copies of death certificate, notarized.
My best to you in these difficult times for you and your loved ones.
posted by Postroad at 3:38 PM on November 30, 2009
that said, my brother died a very short while ago and I can tell you this: cremation costs will vary from state to state, and funeral homes get a lot more for what they claim to do than the additional charge for the cremation itself. In sum: you might have to call a few places. I was told by one place (the state next to mine) that I would have to come there and sign papers. Another place told me I would have to view the body and identify it. Finally, I found a place that expressed the papers to sign, and I paid via charge card over phone. Not pleasant when you are emotionally involved in such things, of course.
Get copies of death certificate, notarized.
My best to you in these difficult times for you and your loved ones.
posted by Postroad at 3:38 PM on November 30, 2009
First, condolences. WRT living will, durable health power of attorney, many states actually have standard forms. I recently did the same for my mom and in about a half hour of googling I was able to find the forms through the County Clerk Recorder's Office.
posted by bananafish at 4:06 PM on November 30, 2009
posted by bananafish at 4:06 PM on November 30, 2009
A good friend of mine is undergoing cancer treatment at the moment, and she has had a lot of workplace issues that made her situation even more difficult. At dinner the other night, she said that one of the organizations that made a HUGE impact on her quality of life was the American Cancer Society.
It's a big organization with a lot of resources, and they have been very helpful in pointing out who to go and how they can help. Many of the resources are free, all are used to dealing with patients and families who are undergoing the same thing you are. Their compassion and kindness and incredible knowledge might be very helpful to you and your mother right now.
Good luck.
posted by HeyAllie at 4:08 PM on November 30, 2009
It's a big organization with a lot of resources, and they have been very helpful in pointing out who to go and how they can help. Many of the resources are free, all are used to dealing with patients and families who are undergoing the same thing you are. Their compassion and kindness and incredible knowledge might be very helpful to you and your mother right now.
Good luck.
posted by HeyAllie at 4:08 PM on November 30, 2009
Soon your mom's physician will introduce the idea of eventual palliative and hospice care. You can ask sooner, because those people will have good local references to estate planners and advisors with the relevant financial hoops and strategies for your state.
The home payment is something that I would especially want advice on. For example, many states have an exemption for a certain amount of equity in a home during bankruptcy. Can any assets be shielded by transferring them to children now? I'd want to know.
That 2 years is probably a median, the 50/50 bet, not a guaranteed by X date.
posted by a robot made out of meat at 4:24 PM on November 30, 2009
The home payment is something that I would especially want advice on. For example, many states have an exemption for a certain amount of equity in a home during bankruptcy. Can any assets be shielded by transferring them to children now? I'd want to know.
That 2 years is probably a median, the 50/50 bet, not a guaranteed by X date.
posted by a robot made out of meat at 4:24 PM on November 30, 2009
You might want to seek out an oncology social worker where your mom is being or going to be treated. That person could be very helpful.
Also, although I have not used their services myself, but I have heard very good things about and am a supporter of The Lance Armstrong Foundation. You might want to give them a call or send them an email - it is their mission to provide comprehensive support for free to people with cancer, their caregivers, friends and family.
Wishing you, your mom and your family peace and strength.
posted by nnk at 4:24 PM on November 30, 2009
Also, although I have not used their services myself, but I have heard very good things about and am a supporter of The Lance Armstrong Foundation. You might want to give them a call or send them an email - it is their mission to provide comprehensive support for free to people with cancer, their caregivers, friends and family.
Wishing you, your mom and your family peace and strength.
posted by nnk at 4:24 PM on November 30, 2009
Get copies of death certificate, notarized.
I think the funeral guy recommended 10 and we used them all. AOL required one to cancel my dad's account. Sadly, I'm not kidding.
posted by Bunglegirl at 4:42 PM on November 30, 2009
I think the funeral guy recommended 10 and we used them all. AOL required one to cancel my dad's account. Sadly, I'm not kidding.
posted by Bunglegirl at 4:42 PM on November 30, 2009
I'm sorry for what you're going through. My dad was diagnosed with stage 4 cancer a year ago and they gave him 4 weeks life expectancy. He is doing so well now that you can't even tell that he is sick. So, no matter what the life expectancy they give, you should have plans for what will happen if she outlives that estimate. You wouldn't want her to run through her savings in 6 months if she ends up living another 6 years.
I'd talk to a financial planner (depending on the bank she is with, they may offer this service for free - remember you don't have to buy anything from them, but you can listen to their general strategies). They can help you with decisions such as selling the house, how best to deal with her living and medical expenses, etc.
You can prepay for funeral expenses - my father had me sit down with a friend of his who is a funeral director and we planned it all out together, which I have to admit was a bit... disconcerting. We planned for a burial, not cremation, so I don't know how much cremation costs, but the estimate we had was ~4k, so I think cremation would be less than that.
As for chemo, it is really exhausting, because the treatments are essentially toxic. For example, my dad takes some of his chemo via pills, and they are given to us in a bag with a big biohazard symbol on them and a warning for nobody to touch them but the patient. He is pretty wiped out for the first couple of days after each treatment. Chemotherapy can be used as a palliative treatment rather than a curative in end-stage cancers, though, and some of the chemo drugs are less harsh on the body than others, so depending on your mother's unique health situation, they may opt for that if the cancer returns later.
Lastly, if you post your general location, someone may be able to recommend an attorney or financial planner to you.
posted by bedhead at 6:40 PM on November 30, 2009
I'd talk to a financial planner (depending on the bank she is with, they may offer this service for free - remember you don't have to buy anything from them, but you can listen to their general strategies). They can help you with decisions such as selling the house, how best to deal with her living and medical expenses, etc.
You can prepay for funeral expenses - my father had me sit down with a friend of his who is a funeral director and we planned it all out together, which I have to admit was a bit... disconcerting. We planned for a burial, not cremation, so I don't know how much cremation costs, but the estimate we had was ~4k, so I think cremation would be less than that.
As for chemo, it is really exhausting, because the treatments are essentially toxic. For example, my dad takes some of his chemo via pills, and they are given to us in a bag with a big biohazard symbol on them and a warning for nobody to touch them but the patient. He is pretty wiped out for the first couple of days after each treatment. Chemotherapy can be used as a palliative treatment rather than a curative in end-stage cancers, though, and some of the chemo drugs are less harsh on the body than others, so depending on your mother's unique health situation, they may opt for that if the cancer returns later.
Lastly, if you post your general location, someone may be able to recommend an attorney or financial planner to you.
posted by bedhead at 6:40 PM on November 30, 2009
First of all, I am so sorry for your mom's diagnosis. You can check my posting history to see I just went through this with my mother and she passed away two weeks ago.
When my mom was first diagnosed, the first thing she did was create several legal documents: Durable Power of Attorney, Living Will, Health Care Directive, Will, Funeral Arrangements. All of these documents were created from a program called WillMaker Plus. This was used because she made me the "everything" and it was pretty straight-forward. If your siblings are going to share in some of the duties, then I suggest a lawyer; they can be invaluable at guiding you through the questions you have for now, as she gets closer to death, and handling the estate. If you go your own route, you can check the Attorney General's website of the state your mom resides in for some guidance on these types of documents. Also, be VERY careful in how they are completed. Some require witnesses, some notaries, some have the witness' signatures notarized. This is all going to vary by state.
Next, your mom might want to have a "family meeting" where she vocalizes her intentions to everyone at the same time. This will avoid some issues down the road, because when she gets to the point of needing someone to make decisions for her, there is still a lot of room for interpretation and the quality of life discussions come into play and although she may seem to be making decisions for herself for a long time, there will come a day when someone has to step in and interpret her wishes.
#1 - I can't say enough about having your mom spend her money on her own well-being!! My mom was petrified of running out of money, had a mortgage, was on a non-paying LOA from her work, etc. She received long-term disability and social security and refused to spend any of it on her own comfort and ended up dying with over $30K in cash! It wasn't until the last month before she died (and she was given another 2-3 years at that point) where she said maybe she should start a "bucket list" and enjoy herself. Had we known she was so close to death, you better believe I would have forced her to spend it on her comfort. As far as allowing her to qualify for assistance by being "poor" ... there are so many programs out there that give services for free for cancer patients - house cleaning, yard cleaning, meals on wheels, transportation to/from appointments, etc. Get to a oncologist social worker connected to her oncologist's office straight away for guidance.
#2 - Agree with everyone re: funeral costs. My mom also requested cremation and then scattering in the ocean, so no real costs, right? Well, funeral homes "package" deals now, so you get a lot of stuff you might not want, but if you buy separately, the base price is high. There are super low-budget cremations for a few hundred dollars if you want just cremation and a plain box for the ashes, but any sort of ceremony, etc will be more. I spent $4K for a pretty basic service. ColdChef is your Metafilter expert here.
#3 - If she's the only person on the title of the house, then selling after her death would be put on the executor/trix of the estate. My mom also wanted to stay in her own home and she lived alone. A few issues. Chemo, radiation, etc is BRUTAL on a person. My mom couldn't really maintain the house, so people were coming over to cook, clean, do laundry, etc. Be sure to request and organize volunteers straight away. Consider if you sell the house now, where will your mom go? Move in with a loved one? A small apartment? Wouldn't make too hasty a decision on that one; better to see how she tolerates treatment and handling the house.
#4 - As mentioned, Chemo does terrible things to the body. My mom said "everything hurt" when she went through it. She had two rounds. The first was less aggressive (she didn't lose her hair) but found out that her cancer had metastasized to her bones and lymph nodes while in treatment, so her second round was more aggressive. She was miserable and at times could barely walk she was so tired. The biggest thing to remember with chemo is that she will be so weak and tired right after, she will need help with everything. And it dulls the taste buds and makes things take like metal. My mom lost a ton of weight and just sustained on Ensure a lot of the time. Be sure to provide protein shakes, lots of pre-cooked meals and whatever you do, if she says she's hungry, feed her as much as she will eat! Staying healthy - eating right, exercising as best as possible, etc will help. Nobody can answer the question about "how long?" and how quickly she goes downhill once the cancer takes over. You will hear so many different timeframes from friends, the internet, the doctors. My mom was given a diagnosis of 6 months when she first found out. Then, after aggressive treatment, was given 2-3 years. She died 11 months after her diagnosis. BUT ... she also had mini-strokes the last couple of months and inconclusive results of whether the cancer metastasized to her brain at the end. So many factors involved, and I know so well how frustrating it is to not know, but your mom will tell you - in how she looks, feels, behaves. Focus on quality of life versus quantity.
#5 - See above. Again, my suggestion is to get a lawyer now to get the ducks in a row before you need it.
#6 - See above. Her treatment plan might alter as she goes along. It really depends on the oncologist. And with that, I also say, be sure she likes and connects with her oncologist. This person will become the primary care doctor for her and will coordinate all of her medical needs, not just cancer, but psychology, radiology, etc, depending on what she needs.
I'm sorry for writing a book. This is all very fresh for me and even though we prepared for a lot, there are so many questions I had that I couldn't get straight answers for, so forgive me if some of my information falls under TMI or is blunt. Again, this is my mom's experience, but you can see above from Jessamyn, people do live with lung cancer longer than the old statistics you might run across, so don't lose hope.
Good luck to you, your mom and your family. You can MeMail me if you have more questions, want to talk, vent, etc.
posted by cyniczny at 7:14 PM on November 30, 2009
When my mom was first diagnosed, the first thing she did was create several legal documents: Durable Power of Attorney, Living Will, Health Care Directive, Will, Funeral Arrangements. All of these documents were created from a program called WillMaker Plus. This was used because she made me the "everything" and it was pretty straight-forward. If your siblings are going to share in some of the duties, then I suggest a lawyer; they can be invaluable at guiding you through the questions you have for now, as she gets closer to death, and handling the estate. If you go your own route, you can check the Attorney General's website of the state your mom resides in for some guidance on these types of documents. Also, be VERY careful in how they are completed. Some require witnesses, some notaries, some have the witness' signatures notarized. This is all going to vary by state.
Next, your mom might want to have a "family meeting" where she vocalizes her intentions to everyone at the same time. This will avoid some issues down the road, because when she gets to the point of needing someone to make decisions for her, there is still a lot of room for interpretation and the quality of life discussions come into play and although she may seem to be making decisions for herself for a long time, there will come a day when someone has to step in and interpret her wishes.
#1 - I can't say enough about having your mom spend her money on her own well-being!! My mom was petrified of running out of money, had a mortgage, was on a non-paying LOA from her work, etc. She received long-term disability and social security and refused to spend any of it on her own comfort and ended up dying with over $30K in cash! It wasn't until the last month before she died (and she was given another 2-3 years at that point) where she said maybe she should start a "bucket list" and enjoy herself. Had we known she was so close to death, you better believe I would have forced her to spend it on her comfort. As far as allowing her to qualify for assistance by being "poor" ... there are so many programs out there that give services for free for cancer patients - house cleaning, yard cleaning, meals on wheels, transportation to/from appointments, etc. Get to a oncologist social worker connected to her oncologist's office straight away for guidance.
#2 - Agree with everyone re: funeral costs. My mom also requested cremation and then scattering in the ocean, so no real costs, right? Well, funeral homes "package" deals now, so you get a lot of stuff you might not want, but if you buy separately, the base price is high. There are super low-budget cremations for a few hundred dollars if you want just cremation and a plain box for the ashes, but any sort of ceremony, etc will be more. I spent $4K for a pretty basic service. ColdChef is your Metafilter expert here.
#3 - If she's the only person on the title of the house, then selling after her death would be put on the executor/trix of the estate. My mom also wanted to stay in her own home and she lived alone. A few issues. Chemo, radiation, etc is BRUTAL on a person. My mom couldn't really maintain the house, so people were coming over to cook, clean, do laundry, etc. Be sure to request and organize volunteers straight away. Consider if you sell the house now, where will your mom go? Move in with a loved one? A small apartment? Wouldn't make too hasty a decision on that one; better to see how she tolerates treatment and handling the house.
#4 - As mentioned, Chemo does terrible things to the body. My mom said "everything hurt" when she went through it. She had two rounds. The first was less aggressive (she didn't lose her hair) but found out that her cancer had metastasized to her bones and lymph nodes while in treatment, so her second round was more aggressive. She was miserable and at times could barely walk she was so tired. The biggest thing to remember with chemo is that she will be so weak and tired right after, she will need help with everything. And it dulls the taste buds and makes things take like metal. My mom lost a ton of weight and just sustained on Ensure a lot of the time. Be sure to provide protein shakes, lots of pre-cooked meals and whatever you do, if she says she's hungry, feed her as much as she will eat! Staying healthy - eating right, exercising as best as possible, etc will help. Nobody can answer the question about "how long?" and how quickly she goes downhill once the cancer takes over. You will hear so many different timeframes from friends, the internet, the doctors. My mom was given a diagnosis of 6 months when she first found out. Then, after aggressive treatment, was given 2-3 years. She died 11 months after her diagnosis. BUT ... she also had mini-strokes the last couple of months and inconclusive results of whether the cancer metastasized to her brain at the end. So many factors involved, and I know so well how frustrating it is to not know, but your mom will tell you - in how she looks, feels, behaves. Focus on quality of life versus quantity.
#5 - See above. Again, my suggestion is to get a lawyer now to get the ducks in a row before you need it.
#6 - See above. Her treatment plan might alter as she goes along. It really depends on the oncologist. And with that, I also say, be sure she likes and connects with her oncologist. This person will become the primary care doctor for her and will coordinate all of her medical needs, not just cancer, but psychology, radiology, etc, depending on what she needs.
I'm sorry for writing a book. This is all very fresh for me and even though we prepared for a lot, there are so many questions I had that I couldn't get straight answers for, so forgive me if some of my information falls under TMI or is blunt. Again, this is my mom's experience, but you can see above from Jessamyn, people do live with lung cancer longer than the old statistics you might run across, so don't lose hope.
Good luck to you, your mom and your family. You can MeMail me if you have more questions, want to talk, vent, etc.
posted by cyniczny at 7:14 PM on November 30, 2009
I am sorry you and your family have to go through this.
You didn't ask this specifically but I'll mention it just in case. If your mom needs help thinking about what kind of care she will want when she gets sicker, you might want to check out Five Wishes.
posted by pocket_of_droplets at 1:23 AM on December 1, 2009
You didn't ask this specifically but I'll mention it just in case. If your mom needs help thinking about what kind of care she will want when she gets sicker, you might want to check out Five Wishes.
posted by pocket_of_droplets at 1:23 AM on December 1, 2009
My mother died of cancer. I'm not a doctor or lawyer, so my understanding is only of one who has seen this. My comments below are pretty blunt, because I understand wanting to know. But if you don't want to really know right now, please skip over my response.
4) More specific to her type of cancer, what can I expect her quality of life after chemo and in the end?
For my mom, the cancer entered her lymph nodes. From there, it went everywhere. It had been in her bones for many years, and in the end it was in her organs and brain -- basically everywhere. With no chemo to stop it, it spread very quickly -- like, weeks. She was given 6 months, but lived 6 weeks after that news. Her pain was, I think, mostly related to it being in her bones, as bone pain is terrible. By the time her organs were shutting down due to the cancer, she was in the hospital and on morphine, still in pain despite the morphine, but obviously less so than without it. That last hospital stay was about a week. From the time her lungs started filling with liquid (the "death rattle"), she lived about 16 hours. I won't lie to you -- it was horrible, she was clearly in pain, she was hallucinating, and her body was fighting to the very end.
Chemo is rough, but (and I'm guessing here) surely they wouldn't go out with the most powerful, most horrible treatments if the goal is palliative. Her doctor will give you lots of information about her specific treatment and what to expect.
5) I was thinking that we'd use a website like legal zoom to handle a will and living will. I hope that she can avoid paying a lawyer $400/hr for this and any other advice that we can find elsewhere. Is it a bad idea to not involve a lawyer?
We were neither rich nor poor; we were thoroughly middle-class. We are a close family, with no squabbles. My mom did a holographic will. This means, she wrote out her will by hand, and signed it with a witness. This was without a lawyer at all. This may not be a good idea if there are difficulties (possible disagreements, etc.). But, at least in my state, this is completely legal.
6) Also, maybe a dumb question, but why can't they simply continue chemo when it does eventually come back?
As a non-doctor, it sounds to me as if they are just trying to slow the cancer, not kill it. Some cancer can't be killed. Some cancer has gone too far, and killing it would kill her. Sometimes, like in the case of my mom, you just run out of chemos -- the cancer becomes "immune" to the chemos, and it's like a super-virus in that, with it immune to all treatments, there's nothing left to stop it. I urge you to talk with her doctor, as he will have lots of information to share with you about this.
posted by Houstonian at 4:22 AM on December 1, 2009
4) More specific to her type of cancer, what can I expect her quality of life after chemo and in the end?
For my mom, the cancer entered her lymph nodes. From there, it went everywhere. It had been in her bones for many years, and in the end it was in her organs and brain -- basically everywhere. With no chemo to stop it, it spread very quickly -- like, weeks. She was given 6 months, but lived 6 weeks after that news. Her pain was, I think, mostly related to it being in her bones, as bone pain is terrible. By the time her organs were shutting down due to the cancer, she was in the hospital and on morphine, still in pain despite the morphine, but obviously less so than without it. That last hospital stay was about a week. From the time her lungs started filling with liquid (the "death rattle"), she lived about 16 hours. I won't lie to you -- it was horrible, she was clearly in pain, she was hallucinating, and her body was fighting to the very end.
Chemo is rough, but (and I'm guessing here) surely they wouldn't go out with the most powerful, most horrible treatments if the goal is palliative. Her doctor will give you lots of information about her specific treatment and what to expect.
5) I was thinking that we'd use a website like legal zoom to handle a will and living will. I hope that she can avoid paying a lawyer $400/hr for this and any other advice that we can find elsewhere. Is it a bad idea to not involve a lawyer?
We were neither rich nor poor; we were thoroughly middle-class. We are a close family, with no squabbles. My mom did a holographic will. This means, she wrote out her will by hand, and signed it with a witness. This was without a lawyer at all. This may not be a good idea if there are difficulties (possible disagreements, etc.). But, at least in my state, this is completely legal.
6) Also, maybe a dumb question, but why can't they simply continue chemo when it does eventually come back?
As a non-doctor, it sounds to me as if they are just trying to slow the cancer, not kill it. Some cancer can't be killed. Some cancer has gone too far, and killing it would kill her. Sometimes, like in the case of my mom, you just run out of chemos -- the cancer becomes "immune" to the chemos, and it's like a super-virus in that, with it immune to all treatments, there's nothing left to stop it. I urge you to talk with her doctor, as he will have lots of information to share with you about this.
posted by Houstonian at 4:22 AM on December 1, 2009
The first question I have is how is her medical insurance? There will be bills. Even traditional chemo is expensive. (my mom is going through it now). I will say that she has BCBS w/ Medicare and the oncology nurse called Caremark and found out that with her benefits her chemo was either free or ridiculously dirt cheap as opposed to $8k a cycle (or something like that).
The reason why they can't continue chemo is it's rough on the body. It will metastisize beyond the lung cancer and chemo will have it's toll on the body. Weight loss, low blood cell count, etc. ruins the body and exposes it to secondary infections, illness, etc. My mom was 5'2, 145 approx at the start of this chemo. After 6 months of chemo after chemo that isn't responding, she's down to 108lbs and does look worn. She can't eat, has diarrhea constantly, nausea, as well as glaucoma from the drugs she took for 6 years. She has run out of options. Sorry to be so blunt but I wanted to let you know why they can't continue chemo forever.
I would ask her to sign off on medical clearance so you may speak with the oncologist at any time. My mom gave me a lot of mixed up information from the start of her illness and speaking with the doctor directly helps.
For her money, you need a lawyer and I would highly suggest a trust and a living will. Also I would encourage hospice (which will require money too). PMI isn't that bad for her to worry about but you do need a lawyer since she will have many assets to pay off including the house most likely and how to do that effectively.
I'm extremely sorry you are going through this. I am too with a much shorter time frame left with her. Enjoy the time you have now. If she's up to it, take her somewhere she always wanted to go.
posted by stormpooper at 6:43 AM on December 1, 2009
The reason why they can't continue chemo is it's rough on the body. It will metastisize beyond the lung cancer and chemo will have it's toll on the body. Weight loss, low blood cell count, etc. ruins the body and exposes it to secondary infections, illness, etc. My mom was 5'2, 145 approx at the start of this chemo. After 6 months of chemo after chemo that isn't responding, she's down to 108lbs and does look worn. She can't eat, has diarrhea constantly, nausea, as well as glaucoma from the drugs she took for 6 years. She has run out of options. Sorry to be so blunt but I wanted to let you know why they can't continue chemo forever.
I would ask her to sign off on medical clearance so you may speak with the oncologist at any time. My mom gave me a lot of mixed up information from the start of her illness and speaking with the doctor directly helps.
For her money, you need a lawyer and I would highly suggest a trust and a living will. Also I would encourage hospice (which will require money too). PMI isn't that bad for her to worry about but you do need a lawyer since she will have many assets to pay off including the house most likely and how to do that effectively.
I'm extremely sorry you are going through this. I am too with a much shorter time frame left with her. Enjoy the time you have now. If she's up to it, take her somewhere she always wanted to go.
posted by stormpooper at 6:43 AM on December 1, 2009
Thanks for all the kind and informative responses. I appreciate all of your advice and sharing of stories, and I understand that all situations are unique. Please feel free to write long responses, I'm reading every word!
A little more background info:
We live in Illinois. She went to her dentist with discomfort in her jaw, who recommended a biopsy which revealed that it was probably cancer coming from the lungs. After a PET scan, she was officially diagnosed with Stage IV SCLC, about a month ago. It spread from her lung to her liver, her lower back (near the spine), and to her jaw. I saw the PET scan images, and the tumor in her lung was a very small spot. But, the liver was covered completely in a very low-contrast cloudiness. They put in a super-port and started the chemo two days after diagnoses (both procedures on the same day). Chemo cycles are three days every three weeks. She is on Medicare and has another supplemental heath insurance that's supposed to cover what medicare doesn't. Not sure yet how much is actually being covered.
I know that the prognosis is purely an estimate and based on averages. My father-in-law lived 20+ years past his 5-year prognosis from stomach cancer. So, I'm "cautiously optimistic" (as the doctor put it) that she'll also live longer than the average. Especially since she was pretty healthy before it, other than high levels of stress and lack of sleep (Which may or may not have contributed to the cancer. That hasn't been scientifically proven, nor disproven to be a factor.) And, I appreciate the point that someone made to not tell my mom that I believe stress caused it. I have not done this and will not do this, because it's not certain and even if it was, I don't want her to feel guilty about it.
So far, after two chemo cycles, she's definitely tired but I think she's doing very well overall. Her back and jaw pain is gone, and they've been able to find medication that works for the nausea and her appetite. She lost a lot of weight before the diagnosis because she had zero appetite. But, since then, she's stabilized her weight. So far so good I guess, given the circumstances.
I think from all of your responses, it sounds like we're just going to need more help than what we can do on our own to save a few bucks. A lawyer sounds like a good idea... at least an initial meeting. My $400 guestimate was based on one experience I had with a lawyer, and I may be exaggerating (but, just a little :)). It's been awhile. So, I'm going to recommend speaking with a lawyer, estate planners, social workers, etc. and also take advantage of free services if possible (American Cancer Society and Lance Armstrong Foundation). Also, I think I'll talk to her about prepaying for funeral services, so that's taken care of. Then, I will recommend saving the rest to use for her own care/comfort.
I will also take a look at the links given (willmaker plus, lawyer and social worker links, etc.). Thank you for those!!! My mom already plans on using some of her time to go through photos and scan them. I noticed a lot of you made comments about helping with cooking, laundry, household chores, etc. I should mention that my younger brother still lives with her, but my parents are divorced. So, at least he's there to help as well (and is old enough to do so). I don't want all that to fall on him though. So far, she's been able to do that stuff on her own. But, she's very proud and independent, and the type who doesn't like to ask for help. So, I'll have to ask my brother to keep an eye on her when it comes to doing those type of things, and let me know if he notices that she is having trouble doing basic things. Hopefully, for her sake, that will be a long time from now.
posted by Swede78 at 8:50 AM on December 1, 2009
A little more background info:
We live in Illinois. She went to her dentist with discomfort in her jaw, who recommended a biopsy which revealed that it was probably cancer coming from the lungs. After a PET scan, she was officially diagnosed with Stage IV SCLC, about a month ago. It spread from her lung to her liver, her lower back (near the spine), and to her jaw. I saw the PET scan images, and the tumor in her lung was a very small spot. But, the liver was covered completely in a very low-contrast cloudiness. They put in a super-port and started the chemo two days after diagnoses (both procedures on the same day). Chemo cycles are three days every three weeks. She is on Medicare and has another supplemental heath insurance that's supposed to cover what medicare doesn't. Not sure yet how much is actually being covered.
I know that the prognosis is purely an estimate and based on averages. My father-in-law lived 20+ years past his 5-year prognosis from stomach cancer. So, I'm "cautiously optimistic" (as the doctor put it) that she'll also live longer than the average. Especially since she was pretty healthy before it, other than high levels of stress and lack of sleep (Which may or may not have contributed to the cancer. That hasn't been scientifically proven, nor disproven to be a factor.) And, I appreciate the point that someone made to not tell my mom that I believe stress caused it. I have not done this and will not do this, because it's not certain and even if it was, I don't want her to feel guilty about it.
So far, after two chemo cycles, she's definitely tired but I think she's doing very well overall. Her back and jaw pain is gone, and they've been able to find medication that works for the nausea and her appetite. She lost a lot of weight before the diagnosis because she had zero appetite. But, since then, she's stabilized her weight. So far so good I guess, given the circumstances.
I think from all of your responses, it sounds like we're just going to need more help than what we can do on our own to save a few bucks. A lawyer sounds like a good idea... at least an initial meeting. My $400 guestimate was based on one experience I had with a lawyer, and I may be exaggerating (but, just a little :)). It's been awhile. So, I'm going to recommend speaking with a lawyer, estate planners, social workers, etc. and also take advantage of free services if possible (American Cancer Society and Lance Armstrong Foundation). Also, I think I'll talk to her about prepaying for funeral services, so that's taken care of. Then, I will recommend saving the rest to use for her own care/comfort.
I will also take a look at the links given (willmaker plus, lawyer and social worker links, etc.). Thank you for those!!! My mom already plans on using some of her time to go through photos and scan them. I noticed a lot of you made comments about helping with cooking, laundry, household chores, etc. I should mention that my younger brother still lives with her, but my parents are divorced. So, at least he's there to help as well (and is old enough to do so). I don't want all that to fall on him though. So far, she's been able to do that stuff on her own. But, she's very proud and independent, and the type who doesn't like to ask for help. So, I'll have to ask my brother to keep an eye on her when it comes to doing those type of things, and let me know if he notices that she is having trouble doing basic things. Hopefully, for her sake, that will be a long time from now.
posted by Swede78 at 8:50 AM on December 1, 2009
I should mention that my younger brother still lives with her, but my parents are divorced. So, at least he's there to help as well (and is old enough to do so). I don't want all that to fall on him though.
Its going to be hard on him, I was in this position. The work isn't hard, its just being the one that everyone is relying on and seeing your parents get gradually sicker every day gets to you. Be good to him.
posted by Bunglegirl at 10:56 AM on December 1, 2009
Its going to be hard on him, I was in this position. The work isn't hard, its just being the one that everyone is relying on and seeing your parents get gradually sicker every day gets to you. Be good to him.
posted by Bunglegirl at 10:56 AM on December 1, 2009
Seconding, Bunglegirl - I was in that position too. Please make sure to look out for him as well -- and make sure he takes time away from the house, does the things he loves, sees his friends and carries on with his life as best he can.
. . . and that goes for you too. You're doing amazing things for your mom -- she's lucky to have you and I bet she would want you not to lose track of your life either.
posted by nnk at 7:35 AM on December 2, 2009
. . . and that goes for you too. You're doing amazing things for your mom -- she's lucky to have you and I bet she would want you not to lose track of your life either.
posted by nnk at 7:35 AM on December 2, 2009
This thread is closed to new comments.
Yes, it is a bad idea to not involve a lawyer. The costs of doing it cheap are far higher than the costs of doing it right. Unless you live in New York City, you should not have to pay $400 per hour.
This site will allow you to search for a qualified lawyer. She may indeed want to qualify for medical assistance when she is close to the end. It is at that point that she will need skilled nursing care and/or hospice care.
One of the things that lawyers often recommend is a prepaid funeral plan. Discuss it with the lawyer you consult.
Good luck in this trying time.
posted by yclipse at 2:30 PM on November 30, 2009