Preparing emotionally and financially for the terminal illness of a parent
May 12, 2006 5:17 AM Subscribe
My father has primary liver cancer, how do I prepare for the coming months emotionally and financially?
It appears my father has primary liver cancer, and will not make it through the summer. I’ve given up the dream job I was suppose to start next week in another part of the country and will be moving in with him for the time being to support him and care for him in anyway I can.
I have thousands of questions going through my head right now, but I’ve narrowed them down to two. First, I am interested in hearing people’s experience with primary liver cancer. I have no idea what to expect in the next few months, and further, no idea how I can be most helpful to my father during this time. I am very scared to be losing my father, and really need some idea of what this experience will be like. Any anecdotes or advice are heartily welcomed.
Second, my father has no will and no life insurance. He owns a house that he intends for me to inherit (I’m an only child and my mother passed away when I was young). We also jointly own some stock. Who do we have to talk to in order for this process to go as smoothly as possible (we are both in Massachusetts)? What kind of financial responsibilities will I have in this situation? Are there any books that will help me navigate through this situation?
It appears my father has primary liver cancer, and will not make it through the summer. I’ve given up the dream job I was suppose to start next week in another part of the country and will be moving in with him for the time being to support him and care for him in anyway I can.
I have thousands of questions going through my head right now, but I’ve narrowed them down to two. First, I am interested in hearing people’s experience with primary liver cancer. I have no idea what to expect in the next few months, and further, no idea how I can be most helpful to my father during this time. I am very scared to be losing my father, and really need some idea of what this experience will be like. Any anecdotes or advice are heartily welcomed.
Second, my father has no will and no life insurance. He owns a house that he intends for me to inherit (I’m an only child and my mother passed away when I was young). We also jointly own some stock. Who do we have to talk to in order for this process to go as smoothly as possible (we are both in Massachusetts)? What kind of financial responsibilities will I have in this situation? Are there any books that will help me navigate through this situation?
I can't speak to the experience of liver cancer, specifically. One of my best friends lost his grandfather, who was like a father to me, to lung cancer, and it was heartbreaking to see him waste away. There's no real way to emotionally prepare yourself for it - the best thing you can do is make sure that he's comfortable (I'm presuming that you're not pursuing treatment, that he's too far gone?)
As for the money issues - get a will drawn up immediately. Life insurance will be out of the question now, for obvious reasons. You will almost certainly want to consider talking to a lawyer or a financial professional (the money spent now will save you countless headaches and even MORE money down the road) as far as navigating the legal issues surrounding the inheritance and things like that.
I'm sorry for your situation... cancer is never pleasant.
posted by antifuse at 5:41 AM on May 12, 2006
As for the money issues - get a will drawn up immediately. Life insurance will be out of the question now, for obvious reasons. You will almost certainly want to consider talking to a lawyer or a financial professional (the money spent now will save you countless headaches and even MORE money down the road) as far as navigating the legal issues surrounding the inheritance and things like that.
I'm sorry for your situation... cancer is never pleasant.
posted by antifuse at 5:41 AM on May 12, 2006
I'm really sorry.
posted by DieHipsterDie at 5:51 AM on May 12, 2006
posted by DieHipsterDie at 5:51 AM on May 12, 2006
Contact hospice right away. They will help with all of this. There are very good and not so good hospices, so choose carefully.
posted by Jandasmo at 6:21 AM on May 12, 2006
posted by Jandasmo at 6:21 AM on May 12, 2006
My late grandmother died of liver cancer a few years ago. Here are some notes from my experiences:
She wasn't in a lot of pain-- she was feeling run-down for about a month, went to the doctor and was told that she only had a few months to live. She actually had about three weeks. The doctor's only giving you a rough estimate-- your dad could be gone quicker than you expect, or you might have more time with him than you're thinking. Expect nothing in terms of progression ...
... because the end doesn't have to be so bad. My grandmother kept going about her usual routine until about a week before she died because she didn't want her life to stop. She was easily fatigued, but she wasn't in constant pain. She lived alone, in another state, and she was adamant that nothing would change until she needed us (us being my dad (her son), my mom and me and my cousins and my uncle's widow).
Just five days before she died she told my dad (who had insisted on coming up) that she didn't feel up to leaving the house any more, and my mom and I went up to her house a day later. Again, she wasn't in agony or even real pain. She was just very tired. We still thought she might have months of being bed-ridden.
The last 36 hours of her life were rough. She shut down enough to no longer get up, later lapsed into semi-consciousness (calling out for friends and neighbors who were long dead) and spent about 8 hours unconscious as her breathing slowly petered out.
She died at home a day before the Red Sox were eliminated in the 1999 playoffs and she had been well enough to enjoy the games until the day before. She had opiates available to her but she never needed them while she was conscious. When she was semi-conscious and restless, I gave her a few doses of morphine because she may have been uncomfortable. But that, food (later just juice), cleaning of her bed in the last few hours of her life and our company was all that she needed.
The only thing I would have done differently was gotten her Do Not Resuscitate paperwork in order beforehand, but we didn't expect her to go so quickly. I had a VERY ugly confrontation with the paramedics who wanted to try and revive her (we had the DNR order, but she hadn't signed it yet), to the point that the sheriff who arrived a few minutes later had to intervene. I was ready to go to jail to spare my grandmother and my father the agony of a couple more hours of suffering had their potential attempt been successful, and the whole situation could have been avoided if we had gotten her to sign a piece of paper the day before. The paramedics are generally obligated to attempt a resuscitation if there's no completed DNR. Fortunately, this was in a small New England town and the sheriff knew my grandmother and her situation. Get the DNR release from the hospital, fill it out, and have your dad sign it.
It wasn't a bad way to go-- my grandmother kept her life nearly unchanged, didn't really suffer, and she died at home with her family around her and the last game of the '99 season on the television.
My thoughts are with you. And you're going to dwell on this, obviously. But you must dwell on the time you have with your dad. I was crushed to see the hub of my dad's family die, but I had a really amazing time savoring the two days I spent with her. I learned more about her life in those two days that I had in 25 years. I wish you the best that possibly come out of this.
posted by Mayor Curley at 6:36 AM on May 12, 2006
She wasn't in a lot of pain-- she was feeling run-down for about a month, went to the doctor and was told that she only had a few months to live. She actually had about three weeks. The doctor's only giving you a rough estimate-- your dad could be gone quicker than you expect, or you might have more time with him than you're thinking. Expect nothing in terms of progression ...
... because the end doesn't have to be so bad. My grandmother kept going about her usual routine until about a week before she died because she didn't want her life to stop. She was easily fatigued, but she wasn't in constant pain. She lived alone, in another state, and she was adamant that nothing would change until she needed us (us being my dad (her son), my mom and me and my cousins and my uncle's widow).
Just five days before she died she told my dad (who had insisted on coming up) that she didn't feel up to leaving the house any more, and my mom and I went up to her house a day later. Again, she wasn't in agony or even real pain. She was just very tired. We still thought she might have months of being bed-ridden.
The last 36 hours of her life were rough. She shut down enough to no longer get up, later lapsed into semi-consciousness (calling out for friends and neighbors who were long dead) and spent about 8 hours unconscious as her breathing slowly petered out.
She died at home a day before the Red Sox were eliminated in the 1999 playoffs and she had been well enough to enjoy the games until the day before. She had opiates available to her but she never needed them while she was conscious. When she was semi-conscious and restless, I gave her a few doses of morphine because she may have been uncomfortable. But that, food (later just juice), cleaning of her bed in the last few hours of her life and our company was all that she needed.
The only thing I would have done differently was gotten her Do Not Resuscitate paperwork in order beforehand, but we didn't expect her to go so quickly. I had a VERY ugly confrontation with the paramedics who wanted to try and revive her (we had the DNR order, but she hadn't signed it yet), to the point that the sheriff who arrived a few minutes later had to intervene. I was ready to go to jail to spare my grandmother and my father the agony of a couple more hours of suffering had their potential attempt been successful, and the whole situation could have been avoided if we had gotten her to sign a piece of paper the day before. The paramedics are generally obligated to attempt a resuscitation if there's no completed DNR. Fortunately, this was in a small New England town and the sheriff knew my grandmother and her situation. Get the DNR release from the hospital, fill it out, and have your dad sign it.
It wasn't a bad way to go-- my grandmother kept her life nearly unchanged, didn't really suffer, and she died at home with her family around her and the last game of the '99 season on the television.
My thoughts are with you. And you're going to dwell on this, obviously. But you must dwell on the time you have with your dad. I was crushed to see the hub of my dad's family die, but I had a really amazing time savoring the two days I spent with her. I learned more about her life in those two days that I had in 25 years. I wish you the best that possibly come out of this.
posted by Mayor Curley at 6:36 AM on May 12, 2006
My mother had liver cancer, and it was a really tough time. It was pretty advanced by the time it was discovered, and despite several very awful courses of chemo and radiation, she died. I think that the experience of chemo and radiation therapy was probably a lot more painful than the actual disease, so if you and your dad don't have to deal with that, things may be more like Mayor Curley's grandmother's experience.
This is not going to be easy for you, and I am really, really sorry for what you're both going through. The rest of this post is just a rambling collection of my thoughts and whatever advice I can think of that might help - feel free to email me (in profile) if you have any additional questions or if I can help in any way.
It was a really tough time for me (I was 20 or so), my older sister, and my father. Watching someone you love waste away in a hospital room is so hard, and it's even harder to see a parent so vulnerable and scared. The only thing you can do is be supportive, strong, and try not to be afraid. Tell your dad how much you love him, and talk to him as much as you can - reminisce, tell stories, and listen to what he has to say. Use whatever time you have to get to know him.
After looking at your profile, I'm assuming you're a little older than I was when my mom passed, which is a good thing - you've had more time to know your dad, and you're probably a million times more emotionally mature than I was at 20. This is a good thing - you're in a position to make decisions, and to talk to your dad as an adult. As MayorCurley said, take care of all of your paperwork in advance, and make sure you get any DNR orders and right-to-die decisions discussed, finalized, on paper, and signed as soon as you can. It's hard to talk about these things now, but it isn't going to get any easier. Talk to your dad and his doctors, and figure out if you want to pursue hospice, or if your father can stay at home, or when and under what conditions he might have to go to a hospital. I really wish that we could have had a way to let my mother die in peace outside of the hospital - even a hospice would have been better, and less frightening for her.
Grief hits everyone differently. I spent a lot of time just being numb and doing everything I could to not think about the pain (before and after my mom died), and my sister was really self-destructive for several years after. Although I wouldn't have gone for it at the time, I think that therapy would have really helped both of us deal with our feelings in a better way. Again, your being older might be a real plus here - you're probably much more realistic and mature than I was, so don't be afraid to find a good therapist/shrink/whatever and start talking about things, and don't wait until this is over to start. Also take time for yourself, away from your dad. Do things that make you feel better, relax, and try to have fun when you can.
A lot of time has passed, and it doesn't hurt nearly as much as it used to. I still miss my mom pretty often, though. I miss having her to talk to, and I wish she could know me as an adult, as I am today, I wish she could have met the woman I married, and on and on. But I can also think about who she was to me, and remember so many things that we did, and look at pictures of her and feel really happy.
posted by sluggo at 6:54 AM on May 12, 2006
This is not going to be easy for you, and I am really, really sorry for what you're both going through. The rest of this post is just a rambling collection of my thoughts and whatever advice I can think of that might help - feel free to email me (in profile) if you have any additional questions or if I can help in any way.
It was a really tough time for me (I was 20 or so), my older sister, and my father. Watching someone you love waste away in a hospital room is so hard, and it's even harder to see a parent so vulnerable and scared. The only thing you can do is be supportive, strong, and try not to be afraid. Tell your dad how much you love him, and talk to him as much as you can - reminisce, tell stories, and listen to what he has to say. Use whatever time you have to get to know him.
After looking at your profile, I'm assuming you're a little older than I was when my mom passed, which is a good thing - you've had more time to know your dad, and you're probably a million times more emotionally mature than I was at 20. This is a good thing - you're in a position to make decisions, and to talk to your dad as an adult. As MayorCurley said, take care of all of your paperwork in advance, and make sure you get any DNR orders and right-to-die decisions discussed, finalized, on paper, and signed as soon as you can. It's hard to talk about these things now, but it isn't going to get any easier. Talk to your dad and his doctors, and figure out if you want to pursue hospice, or if your father can stay at home, or when and under what conditions he might have to go to a hospital. I really wish that we could have had a way to let my mother die in peace outside of the hospital - even a hospice would have been better, and less frightening for her.
Grief hits everyone differently. I spent a lot of time just being numb and doing everything I could to not think about the pain (before and after my mom died), and my sister was really self-destructive for several years after. Although I wouldn't have gone for it at the time, I think that therapy would have really helped both of us deal with our feelings in a better way. Again, your being older might be a real plus here - you're probably much more realistic and mature than I was, so don't be afraid to find a good therapist/shrink/whatever and start talking about things, and don't wait until this is over to start. Also take time for yourself, away from your dad. Do things that make you feel better, relax, and try to have fun when you can.
A lot of time has passed, and it doesn't hurt nearly as much as it used to. I still miss my mom pretty often, though. I miss having her to talk to, and I wish she could know me as an adult, as I am today, I wish she could have met the woman I married, and on and on. But I can also think about who she was to me, and remember so many things that we did, and look at pictures of her and feel really happy.
posted by sluggo at 6:54 AM on May 12, 2006
I lost a good friend to this - she was in her early 30's. It was VERY quick and generally as Mayor Curley has described. Not much pain. She was diagnosed in July and died in August.
My sympathies are with you, too. Lost my dad to stomach cancer.
posted by clarkstonian at 7:06 AM on May 12, 2006
My sympathies are with you, too. Lost my dad to stomach cancer.
posted by clarkstonian at 7:06 AM on May 12, 2006
First off, my sympathies to both of you.
Will: Lawyer. While your father is still able, you need to have him get a will done up so that there is no doubt as to where his belongings will go. You will need to get power of attorney in the event your dad becomes incapacitated and so you can make decisions on his behalf. If your dad has savings, perhaps you can impose upon him to make the account joint. Bills still need to get paid. Sorry to bring up money, but you would be surprised at how little anyone who is owed money actually cares about your loved ones or your recent heartbreaks.
Prepare yourself emotionally for the days following his passing. There is a lot of paperwork and decisions that for example, the funeral company will need to have done and this will be generally while you are at your thinnest emotionally. You will be responsible for the coffin, the funeral, transportation, and cremation/burial. Perhaps discuss with your dad the arrangements that he would like - this may also help both of you prepare. I would expect anywhere from 4-8 thousand dollars. Don't get guilted into the fanciest of anything. At that point it really doesn't matter to your dad.
Last, believe that your dad despite his illness, is fortunate to have a child like you who would rather be with him during his remaining days than move across the country for a job. I can't think of a greater compliment to a parent. Your decision speaks volumes about your dad as a parent, and about you as his child.
posted by fox_terrier_guy at 7:20 AM on May 12, 2006
Will: Lawyer. While your father is still able, you need to have him get a will done up so that there is no doubt as to where his belongings will go. You will need to get power of attorney in the event your dad becomes incapacitated and so you can make decisions on his behalf. If your dad has savings, perhaps you can impose upon him to make the account joint. Bills still need to get paid. Sorry to bring up money, but you would be surprised at how little anyone who is owed money actually cares about your loved ones or your recent heartbreaks.
Prepare yourself emotionally for the days following his passing. There is a lot of paperwork and decisions that for example, the funeral company will need to have done and this will be generally while you are at your thinnest emotionally. You will be responsible for the coffin, the funeral, transportation, and cremation/burial. Perhaps discuss with your dad the arrangements that he would like - this may also help both of you prepare. I would expect anywhere from 4-8 thousand dollars. Don't get guilted into the fanciest of anything. At that point it really doesn't matter to your dad.
Last, believe that your dad despite his illness, is fortunate to have a child like you who would rather be with him during his remaining days than move across the country for a job. I can't think of a greater compliment to a parent. Your decision speaks volumes about your dad as a parent, and about you as his child.
posted by fox_terrier_guy at 7:20 AM on May 12, 2006
I lost my Dad a few weeks ago to mesothelioma. Even though he made it 14 months past his diagnosis, and even though that last year, he lived in our home and I was able to see and talk to him every day, I still second-guess some of the aspects of his care and the details (should we have done hospice sooner, should I have advocated more vehemently for x, y or z, etc.)
I know that everyone did the best they could, but I guess I'm trying to tell you there will be doubts no matter how well you prepare. Maybe it's an aspect of grief, I don't know.
Because I am still sorting through a lot of things myself, this may be a little jumbled, so sorry in advance:
posted by whatnot at 8:21 AM on May 12, 2006
I know that everyone did the best they could, but I guess I'm trying to tell you there will be doubts no matter how well you prepare. Maybe it's an aspect of grief, I don't know.
Because I am still sorting through a lot of things myself, this may be a little jumbled, so sorry in advance:
- Moneywise, your father should be on medicare asap, if he is eligible. There are still some out-of-pocket expenses, but it's much better than paying cash for everything.
- We didn't bother with Medicare prescription drug coverage because we didn't have the time to figure it out, and because different plans cover different drugs. Walgreens has started printing out matching lists which show which drugs are covered by which plans. very helpful, but too late for our situation.
- If you are going for strictly comfort care (also called palliative care), I say get in touch with hospice right away. I am biased toward non-profit hospice care, as it seems a little more ethical in concept, but not necessarily in practice. If a doctor says a patient has less than 6 months to live, medicare covers hospice care 100%. This includes at-home care and lots of durable medical equipment (hospital bed, wheelchair, portable john, etc.) You can see why this might be the first call you want to make--they will likely have caseworkers to take care of all the paperwork, too.
- Hospice and/or your Father's treatment center will likely sponsor some support groups. Try going to at least one.
- I found there was a lot of "hurry up and wait" in dealing with Dad's care. It helps if you get in the habit of toting a book or some kind of hobby around to pass the time with. I crochet, but even that got cumbersome when I started having to carry Dad's stuff around, too. I took up sudoku--easy to get into, Dad and I could both work on the puzzles, and it was easy to drop it once it was our turn to be seen.
- We had the following documents set up: Will (with a trust set up within--Dad was very specific about what he wanted done with his money), Durable Power of Attorney, Medical Power of Attorney, and some other document whose name escapes me. He had this done through an estate attorney for $2500, but these forms are all available at office supply stores for much cheaper. Since you are an only child, I would go the simpler route.
- Hospice will have an easy-to-fill-out out-of-hospital DNR form. This is another essential document.
- Definitely ask your Dad what kind of funeral/memorial service, if any, he prefers. Many of us dread these conversations, but they take on a much more practical tone once death becomes imminent. It won't be as hard as you think to talk about these things.
- Finally, I would recommend familiarizing yourself with the stages of death, and recognize that they can happen in a matter of days or spread out over several weeks. My Dad took a "hard right turn" one day, going from coherent, energetic and jovial one afternoon to paranoid, fidgety and disoriented that evening. The following morning, he was almost completely incapacitated, and the hospice nurse told us he would likely never really "come back." That day was hardest, knowing he wouldn't really be with us anymore, but also knowing we couldn't have a laugh over the funny things he had done the night before.
posted by whatnot at 8:21 AM on May 12, 2006
I looked over your question again--about the stocks, just make sure you have right of survivorship and you should be fine. This is also a good idea for his bank account when he becomes incapacitated. You can pay for his prescriptions and groceries on his account without him having to be present.
Also, maximum tax-free gift right now is $12000 per year. Dad used this rule to set aside a nest egg me to cover larger incidentals before and after he died. very helpful.
posted by whatnot at 8:29 AM on May 12, 2006
Also, maximum tax-free gift right now is $12000 per year. Dad used this rule to set aside a nest egg me to cover larger incidentals before and after he died. very helpful.
posted by whatnot at 8:29 AM on May 12, 2006
I lost my beloved stepdad to liver cancer 2 years ago. it was a merciful death compared to what other family members with cancer went through. He lost quite a bit of weight due to digestive problems but wasn't in too bad shape otherwise through most of his battle and his pain was always manageable. This allowed quality time for his remaining days and we were grateful he didn't go through the ravages we've seen in other forms of cancer.
He lived a full life after his diagnosis right up to the day he was hit by the stroke that his doctor had predicted at the time of his diagnosis. He was 75 years old, lived nearly 4 months after the diagnosis and died a peaceful death 36 hours after his stroke.
Death is never easy, but my stepdad's passing was made easier for all involved by tremendous doctors and an excellent hospice service that kept us up to date on what to expect.
My heart goes out to you a22lamia and I hope your dad's remaining time goes as well and is as rewarding as my stepdad's time was.
posted by buggzzee23 at 9:03 AM on May 12, 2006
He lived a full life after his diagnosis right up to the day he was hit by the stroke that his doctor had predicted at the time of his diagnosis. He was 75 years old, lived nearly 4 months after the diagnosis and died a peaceful death 36 hours after his stroke.
Death is never easy, but my stepdad's passing was made easier for all involved by tremendous doctors and an excellent hospice service that kept us up to date on what to expect.
My heart goes out to you a22lamia and I hope your dad's remaining time goes as well and is as rewarding as my stepdad's time was.
posted by buggzzee23 at 9:03 AM on May 12, 2006
First, I am very sorry for what you are going through, and for you father. My dad died in January from very agressive prostate cancer that went to his liver, bones and brain. My mom did most of the primary care for him when he was not in the hospital. My brothers and I took turns with her to share the load. I can't imagine how hard it would be to do it alone.
I would agree completely with all of the advice to get as much of the legal and medical paperwork arranged as soon as possible. Absolutely get a DNR signed immediately. Do sort out as much of the funeral arrangements as you can. After his death is a hard time to concentrate on the many details involved.
Caregiving at the level you will be giving is incredibly draining, not even counting the grief and sadness you feel. The last days of my father's life were the most traumatic thing I have ever witnessed; sharing it with my mother, brothers, husband and friends was essential to making it through. If you don't have this sort of support system, you must get something. Hospice can be fabulous (some are not), a counselor, support groups, any people you can share with, and who will have some understanding of what you are going through.
If your father has any extended family, neighbors, co-workers etc. that could or would help, please let them. You will need some breaks so that you don't bankrupt yourself physically and emotionally, and end up breaking down afterward.
It's been five months for us, and I still don't know what I feel. The first few weeks I was mostly numb and exhausted. Now I guess it's morphing into sadness and loss.
So sorry.
posted by rintj at 9:09 AM on May 12, 2006
I would agree completely with all of the advice to get as much of the legal and medical paperwork arranged as soon as possible. Absolutely get a DNR signed immediately. Do sort out as much of the funeral arrangements as you can. After his death is a hard time to concentrate on the many details involved.
Caregiving at the level you will be giving is incredibly draining, not even counting the grief and sadness you feel. The last days of my father's life were the most traumatic thing I have ever witnessed; sharing it with my mother, brothers, husband and friends was essential to making it through. If you don't have this sort of support system, you must get something. Hospice can be fabulous (some are not), a counselor, support groups, any people you can share with, and who will have some understanding of what you are going through.
If your father has any extended family, neighbors, co-workers etc. that could or would help, please let them. You will need some breaks so that you don't bankrupt yourself physically and emotionally, and end up breaking down afterward.
It's been five months for us, and I still don't know what I feel. The first few weeks I was mostly numb and exhausted. Now I guess it's morphing into sadness and loss.
So sorry.
posted by rintj at 9:09 AM on May 12, 2006
I third the DNR suggestion - and not just for resuscitation. There are dosages of painkillers that cannot be authorized without it. My mother went quickly after chemo and didn't sign a DNR until way after it would have been useful. The most important thing about terminal cancer is to keep the person pain-free.
I also second getting hospice involved. They will be tremendously useful to help you understand what to expect.
Try to get support and help from those around you. My sympathies go out to you.
posted by Flakypastry at 10:35 AM on May 12, 2006
I also second getting hospice involved. They will be tremendously useful to help you understand what to expect.
Try to get support and help from those around you. My sympathies go out to you.
posted by Flakypastry at 10:35 AM on May 12, 2006
You're getting very good advice here & I don't have much to add to it. My father died of primary liver cancer in June of 2000; the last week was very, very difficult and he had a lot of pain. He died at home - he and my mother sat down & had all those difficult conversations about what he wanted in terms of end of life care/memorial service/etc when he was diagnosed, and that was a really good thing. You will have to do that, and do it soon, because you don't know how long he'll be around or how long he'll be coherent. My father was diagnosed in mid April, died on June 30. You will need the DNR -my dad had one and also hospice, who helped get him lots of morphine; he was essentially in a coma for the last 3 days of his life.
It was hard. The hospice people told us not to give him anything, no water, nothing but morphine. It's very, very difficult to do that - your instincts scream "Get a paramedic in here! Get a feeding tube! Do something, anything, to help him!" But your instincts are wrong.
A friend whose mother died of cancer told me that the doctor told her that hearing is the last thing to go - even when you think the person is unconscious, they can still hear you. As my father lay there in a coma I sat by him and read the Wall Street Journal aloud for a long time. I don't know if he heard me or not but I hope he did. The man read that damn paper every day of his life - it was something, little enough, that I could do.
Email is in my profile. I'm seconding the advice above to get a lawyer and talk to hospice, right away. Our hospice person wasn't that wonderful but some of them are great and if they are involved early enough they can definitely help you out with the paperwork and what you will need to do. Oh, and make sure you get a lot of copies of the death certificate - you will need to send them all over the place.
posted by mygothlaundry at 11:17 AM on May 12, 2006
It was hard. The hospice people told us not to give him anything, no water, nothing but morphine. It's very, very difficult to do that - your instincts scream "Get a paramedic in here! Get a feeding tube! Do something, anything, to help him!" But your instincts are wrong.
A friend whose mother died of cancer told me that the doctor told her that hearing is the last thing to go - even when you think the person is unconscious, they can still hear you. As my father lay there in a coma I sat by him and read the Wall Street Journal aloud for a long time. I don't know if he heard me or not but I hope he did. The man read that damn paper every day of his life - it was something, little enough, that I could do.
Email is in my profile. I'm seconding the advice above to get a lawyer and talk to hospice, right away. Our hospice person wasn't that wonderful but some of them are great and if they are involved early enough they can definitely help you out with the paperwork and what you will need to do. Oh, and make sure you get a lot of copies of the death certificate - you will need to send them all over the place.
posted by mygothlaundry at 11:17 AM on May 12, 2006
I am currently in a similar situation - my heart goes out to you. My mother was diagnosed with Stage IV pancreatic cancer in November, which had metastasised to her liver and lungs. She started chemo on December 14th, I came home from school in Greece on December 15th.
Her chemo protocol was aggressive and severe, and a month ago she stopped treatment when it became clear that her organs are failing. She has already survived much longer than we expected - we called in hospice three weeks ago. My family has been amazing.
First sit down and ask your dad what his wishes are for his final arrangements - it's a difficult conversation to anticipate, but as another poster said above, it's easier in the actual discussion. Contact hospice, they will not only set up the DNR, but they can likely give you a list of mortuaries to help you get started on final arrangements. Contact a lawyer to get a living trust set up, just to make the financial portion of it simpler when the time comes.
Myself, we have completed Mom's final arrangements, her living trust has been signed and filed, and she and I have privately discussed her other wishes. Hospice has been amazing - not only for palliative care, which has given her a PCA pump to administer pain meds subcutaneously, but also providing equipment (like a shower bench and oxygen tank) as well as lists of counselors for me when I made it clear that I wanted to start therapy. When the time comes, they will take care of fulfilling Mom's wishes with regards to her aftercare, and the best part, I think, is that there is no need for Mom to be in the hospital these last few days/weeks.
And we're not just sitting around waiting - Mom felt pretty good last week, so we took her out to Lake Havasu to stay at my grandparent's and relax for a few days. Hospice was still available by phone if we had any questions, and Mom got a springtime vacation that she'd been wanting.
Do not be afraid to ask for help. This is a difficult, complicated situation. I wish you and your dad all the best.
posted by annathea at 2:53 PM on May 12, 2006
Her chemo protocol was aggressive and severe, and a month ago she stopped treatment when it became clear that her organs are failing. She has already survived much longer than we expected - we called in hospice three weeks ago. My family has been amazing.
First sit down and ask your dad what his wishes are for his final arrangements - it's a difficult conversation to anticipate, but as another poster said above, it's easier in the actual discussion. Contact hospice, they will not only set up the DNR, but they can likely give you a list of mortuaries to help you get started on final arrangements. Contact a lawyer to get a living trust set up, just to make the financial portion of it simpler when the time comes.
Myself, we have completed Mom's final arrangements, her living trust has been signed and filed, and she and I have privately discussed her other wishes. Hospice has been amazing - not only for palliative care, which has given her a PCA pump to administer pain meds subcutaneously, but also providing equipment (like a shower bench and oxygen tank) as well as lists of counselors for me when I made it clear that I wanted to start therapy. When the time comes, they will take care of fulfilling Mom's wishes with regards to her aftercare, and the best part, I think, is that there is no need for Mom to be in the hospital these last few days/weeks.
And we're not just sitting around waiting - Mom felt pretty good last week, so we took her out to Lake Havasu to stay at my grandparent's and relax for a few days. Hospice was still available by phone if we had any questions, and Mom got a springtime vacation that she'd been wanting.
Do not be afraid to ask for help. This is a difficult, complicated situation. I wish you and your dad all the best.
posted by annathea at 2:53 PM on May 12, 2006
My father died last year of liver mets. He was 59, I was 27. When he got the 3-4 month prognosis, we immediately did the following:
* contacted hospice
* consulted with an estate/trust lawyer
* bought the funeral package & contacted the church
* scheduled a family reunion (Dad was actually able to fly to Texas and have a fun trip)
I also googled every topic I could find on liver cancer, caregiving, signs of death, and death checklists. I compiled a master checklist from all this info and gave copies to everyone in the immediate family, including Dad.
I took on the role of being my father's champion, which was often very difficult. I oversaw how much morphine he was getting (keep a log!) and called the hospice nurse for advice when his pain looked like it might become unmanageable. I managed hurt feelings when he began to withdraw from the world.
My only regret -- One question I waited almost too long to ask my father was, "do you want to die at home?" He did not.
The question did not arise until he took a very sharp turn for the worse. My mother and sister did not want the ambulance to take him away, but I was able to talk them into supporting my father's wishes (he did not want his death to loom over the house). The ambulance ride was not fun. He was in a lot of pain and we did not realize how jaundiced he had become until we saw him in natural sunlight.
In the end, he went into a coma shortly after unloading him at the hospice. But he was very peaceful just before he went unconscious. His actual death was also peaceful.
My experience with the hospice people was great. I ended up spending two nights curled up in a chair in the breakroom while my mother and a rotating crew of family and friends sat vigil in the next room. I met some very kind people - both the nurses and fellow caregivers. We shared meals and told stories. I'll never see those people again & have no idea what their names were, but I'll never forget them, either.
It sounds morbid, but one of my family's best coping mechanisms was being frank about the signs of death. My father would talk frankly about what he was feeling, and when he went comatose, the family's familiarity with the final signs was of great comfort.
I will echo this: do not be afraid to ask for help. It took my mother and I a good solid week to take care of all the post-death paperwork and accounts. And this was without any real probate process to speak of. I took a week's vacation some months afterwards to fully decompress.
In the end, the anticipation was worse than anything else. Before my dad went to hospice, I slept with my lights on every night, terrified of getting "the call" in the dark (I assisted in caregiving the entire process, but left Dad with Mom in the evenings so I could go home). Many times, I felt like I was 5 years old. Other times, I felt older than my folks -- I was taking care of them.
But life goes on, which is both a blessing and a curse in this situation. Helping my father die was the highest honor he'd given me, and it's meant a lot in my life, despite the sadness. My best wishes to you and your family.
posted by Sangre Azul at 5:58 PM on May 12, 2006
* contacted hospice
* consulted with an estate/trust lawyer
* bought the funeral package & contacted the church
* scheduled a family reunion (Dad was actually able to fly to Texas and have a fun trip)
I also googled every topic I could find on liver cancer, caregiving, signs of death, and death checklists. I compiled a master checklist from all this info and gave copies to everyone in the immediate family, including Dad.
I took on the role of being my father's champion, which was often very difficult. I oversaw how much morphine he was getting (keep a log!) and called the hospice nurse for advice when his pain looked like it might become unmanageable. I managed hurt feelings when he began to withdraw from the world.
My only regret -- One question I waited almost too long to ask my father was, "do you want to die at home?" He did not.
The question did not arise until he took a very sharp turn for the worse. My mother and sister did not want the ambulance to take him away, but I was able to talk them into supporting my father's wishes (he did not want his death to loom over the house). The ambulance ride was not fun. He was in a lot of pain and we did not realize how jaundiced he had become until we saw him in natural sunlight.
In the end, he went into a coma shortly after unloading him at the hospice. But he was very peaceful just before he went unconscious. His actual death was also peaceful.
My experience with the hospice people was great. I ended up spending two nights curled up in a chair in the breakroom while my mother and a rotating crew of family and friends sat vigil in the next room. I met some very kind people - both the nurses and fellow caregivers. We shared meals and told stories. I'll never see those people again & have no idea what their names were, but I'll never forget them, either.
It sounds morbid, but one of my family's best coping mechanisms was being frank about the signs of death. My father would talk frankly about what he was feeling, and when he went comatose, the family's familiarity with the final signs was of great comfort.
I will echo this: do not be afraid to ask for help. It took my mother and I a good solid week to take care of all the post-death paperwork and accounts. And this was without any real probate process to speak of. I took a week's vacation some months afterwards to fully decompress.
In the end, the anticipation was worse than anything else. Before my dad went to hospice, I slept with my lights on every night, terrified of getting "the call" in the dark (I assisted in caregiving the entire process, but left Dad with Mom in the evenings so I could go home). Many times, I felt like I was 5 years old. Other times, I felt older than my folks -- I was taking care of them.
But life goes on, which is both a blessing and a curse in this situation. Helping my father die was the highest honor he'd given me, and it's meant a lot in my life, despite the sadness. My best wishes to you and your family.
posted by Sangre Azul at 5:58 PM on May 12, 2006
I lost my father to lung cancer six months ago. The advice here has been great. I want to agree with Sangre Azul: find out if he wants to die at home. It was the one question I procrastinated asking and the one answer I agonized over. I never got his thoughts on the matter except for a brief semi-conscious and semi-coherent moment where I think he motioned that he wanted to stay in the hospital. My interpretation of a few head nods and eye blinks haunted me for weeks. Did I make the right decision? Did I follow his wishes? Also, contact all the different hospices in your area (we had two) and ask to meet with them. After a brief question and answer period with each hospice, the choice was clear for my brother and I. We just clicked with one over the other. And they were great and took care of everything. Just be careful what they ask you to sign. The hospice we went with had me sign only one thing and that was a statement saying I agreed with my dad's desire to not have a feeding tube. They were also very accurate in knowing when he only had days and then hours to go. It's a very stressful time and you won't even fully realize how stressful until some time after. I wish you and your father all the best.
posted by snez at 7:24 PM on May 12, 2006
posted by snez at 7:24 PM on May 12, 2006
My grandmother died of squamous cell carcinoma, and I came home to spend the last month of her life with her. Hospice was a huge help. Although we provided most of her day to day care, they still provided essential support.
You need to take care of yourself as best you can. As the end approaches, you will no longer be following any sort of logical schedule. Make sure that you eat and sleep well enough to stay healthy. Have your favorite books handy - easy ones that you've read before. For me, there was a whole lot of just *being there,* even when my grandmother was too weak to want to talk, and being able to be there, and peaceful, and quiet was important. It was hard for her to be "taken care of" and I think she felt less guilty about my spending so much time with her because I was still doing *something* besides sitting with her.
I gave up a really good job offer to take care of my grandmother, but I don't regret it for a second. When I was ready to come back into the world, I found an even better one.
My next door neighbor, with whom I was close, passed away from liver cancer two months ago. It was quick, so quick that we never even really got time to accept the news of his diagnosis. He died before going through chemo and radiation and endless rounds of painful tests and frantic rushing to the hospital.
I wish you and your father strength and peace.
posted by freshwater_pr0n at 9:45 PM on May 13, 2006
You need to take care of yourself as best you can. As the end approaches, you will no longer be following any sort of logical schedule. Make sure that you eat and sleep well enough to stay healthy. Have your favorite books handy - easy ones that you've read before. For me, there was a whole lot of just *being there,* even when my grandmother was too weak to want to talk, and being able to be there, and peaceful, and quiet was important. It was hard for her to be "taken care of" and I think she felt less guilty about my spending so much time with her because I was still doing *something* besides sitting with her.
I gave up a really good job offer to take care of my grandmother, but I don't regret it for a second. When I was ready to come back into the world, I found an even better one.
My next door neighbor, with whom I was close, passed away from liver cancer two months ago. It was quick, so quick that we never even really got time to accept the news of his diagnosis. He died before going through chemo and radiation and endless rounds of painful tests and frantic rushing to the hospital.
I wish you and your father strength and peace.
posted by freshwater_pr0n at 9:45 PM on May 13, 2006
My dad has liver cancer, too.
Shortly after his initial diagnosis, they found out that it had spread to his lymph nodes. At that point, they gave him between 3 months and a year to live. It's been just over a year and half now, and he's still kicking around. There's always hope.
For me, the toughest thing has been dealing with my own negative thoughts. It's selfish, of course, but true. Going to chemo is rough. Rooms full of people, quietly dying. The first few weeks, I wanted to cry everytime I went to the cancer ward. Eventually, you get used to it, but it takes a while. My dad was lucky, if it can be called that, because he didn't experience any of the side effects commonly associated with the treatment. He even drove himself to and from treatment. But palliative care is apparently less intense, so I don't know how well that statement will carry for you. Dad's just stopped doing chemo lately, though, because the drugs aren't doing anything anymore.
Overall, our experience has so far been a slow one. Nothing has really happened too suddenly. It's very routine. Chemo, feel sick for a bit, feel better later, chemo again. I've noticed that my dad will get fatigued really easily now, but mostly we just take it easy and chill when we leave the house. That's important, actually. Just take it easy, and don't let anyone hassle you. Be the buffer between your dad and the world.
One thing did happen a few months ago, though. Because his liver stopped working right, the doctors installed a "stent". It's a tube, apparently, that helps filter bile. When the stent became blocked up, my dad got jaundice. His skin turned all yellowish, and we had to go to the hospital. They figured out what was wrong pretty quickly, and he had an operation to install another one. Also two weeks ago, we had to go again for something stent related. It wasn't bad, though. Just a quick laparoscopic deal. We left the house and were back home again inside of 5 hours or so.
Anyway, listen. When he was first diagnosed, I was scared about losing my dad too. Even stuff that wasn't that bad, that I would usually just deal with, became unmanageable. It felt like all the shit in the world was pouring down. I ended up pretty depressed, and it really fucked up my life. Emotionally, I'm fine now, but I'm still dealing with the outside life ramifications of my depression. So it's important to get some perspective. Fall back on friends, get a therapist, whatever. I had trouble talking to people about it, and it tore me up after a while. So call someone if you need to.
You have to learn to be okay with this. So be okay, okay? Okay. If you want, you can email me to talk.
posted by Drunken_munky at 12:50 AM on May 14, 2006
Shortly after his initial diagnosis, they found out that it had spread to his lymph nodes. At that point, they gave him between 3 months and a year to live. It's been just over a year and half now, and he's still kicking around. There's always hope.
For me, the toughest thing has been dealing with my own negative thoughts. It's selfish, of course, but true. Going to chemo is rough. Rooms full of people, quietly dying. The first few weeks, I wanted to cry everytime I went to the cancer ward. Eventually, you get used to it, but it takes a while. My dad was lucky, if it can be called that, because he didn't experience any of the side effects commonly associated with the treatment. He even drove himself to and from treatment. But palliative care is apparently less intense, so I don't know how well that statement will carry for you. Dad's just stopped doing chemo lately, though, because the drugs aren't doing anything anymore.
Overall, our experience has so far been a slow one. Nothing has really happened too suddenly. It's very routine. Chemo, feel sick for a bit, feel better later, chemo again. I've noticed that my dad will get fatigued really easily now, but mostly we just take it easy and chill when we leave the house. That's important, actually. Just take it easy, and don't let anyone hassle you. Be the buffer between your dad and the world.
One thing did happen a few months ago, though. Because his liver stopped working right, the doctors installed a "stent". It's a tube, apparently, that helps filter bile. When the stent became blocked up, my dad got jaundice. His skin turned all yellowish, and we had to go to the hospital. They figured out what was wrong pretty quickly, and he had an operation to install another one. Also two weeks ago, we had to go again for something stent related. It wasn't bad, though. Just a quick laparoscopic deal. We left the house and were back home again inside of 5 hours or so.
Anyway, listen. When he was first diagnosed, I was scared about losing my dad too. Even stuff that wasn't that bad, that I would usually just deal with, became unmanageable. It felt like all the shit in the world was pouring down. I ended up pretty depressed, and it really fucked up my life. Emotionally, I'm fine now, but I'm still dealing with the outside life ramifications of my depression. So it's important to get some perspective. Fall back on friends, get a therapist, whatever. I had trouble talking to people about it, and it tore me up after a while. So call someone if you need to.
You have to learn to be okay with this. So be okay, okay? Okay. If you want, you can email me to talk.
posted by Drunken_munky at 12:50 AM on May 14, 2006
Response by poster: Thank you for all of you advice and experiences, they have been very helpful.
posted by a22lamia at 5:05 PM on May 14, 2006
posted by a22lamia at 5:05 PM on May 14, 2006
This may be too whoo-ji whoo-ji for meta and it doesn't address your questions but here goes.
My mother-in-law came to live with us 2 years ago and died last month at home in her bed. She professed to be ready to go and I believe her.
About a week before her death she fell in love with the world. She loved everybody and everything. One image I have is her resting with her head on a pillow and giving it a quick kiss. The space in her room was incredible. Sitting with her asleep I felt so blissfully stoned. About 3 days before she died she asked my wife, "Should I go now? Should I go?" My wife said she looked radiant. If you give credence to the idea of spirit, this is when her spirit left. She was conscious for another day and she was not in love with everything. The day before my wife in her scrubby gardening clothes was "beautiful", now she was exasperated my wife was not wearing a dress. These last days were hard.
I feel so blessed to have been with her. It sounds sappy but I was the one given the gift with Sophy's stay with us and her passing. It wasn't a free gift but I am so much richer.
Take care of yourself, you can do only what you can do.
posted by pointilist at 11:20 PM on May 14, 2006
My mother-in-law came to live with us 2 years ago and died last month at home in her bed. She professed to be ready to go and I believe her.
About a week before her death she fell in love with the world. She loved everybody and everything. One image I have is her resting with her head on a pillow and giving it a quick kiss. The space in her room was incredible. Sitting with her asleep I felt so blissfully stoned. About 3 days before she died she asked my wife, "Should I go now? Should I go?" My wife said she looked radiant. If you give credence to the idea of spirit, this is when her spirit left. She was conscious for another day and she was not in love with everything. The day before my wife in her scrubby gardening clothes was "beautiful", now she was exasperated my wife was not wearing a dress. These last days were hard.
I feel so blessed to have been with her. It sounds sappy but I was the one given the gift with Sophy's stay with us and her passing. It wasn't a free gift but I am so much richer.
Take care of yourself, you can do only what you can do.
posted by pointilist at 11:20 PM on May 14, 2006
My dad died from Cancer and it is rough.
Getting the will in order while you can is the best you can do. Don't forget family politics; you don't want anyone accusing you in two years of taking advantage of him, so make sure these things are done while he still has his facilities and can tell people this is what HE wanted. My family broke up under similar circumstances. They didn't believe my Dad would ever say those things... but he did.
In Mass we used Cranberry Hospice, they were amazing. Hospice will provide many things; beds, oxygen, etc. They are really amazing people, call them in, they will help you more than you can imagine.
It's hard for him to be dying, and he might need to talk things out. But as my Dad said, "I have the easy job, I'm dying - you have to live on." Anything you want to talk about, ask about, any information you think you might ever need, any stories you have not heard 20 times, ask them. Record what you can. In 5ive years when you are ready to look at it you will be happy to have it. Or else you can throw it away.
Join a support group. They might meet once a week or something, and seem kind of hokie. But knowing others are dealing with the same thing, and knowing you can call them and make morbid jokes about death or whatever was a great comfort to me. These are your war buddies.
My Dad got pleasure out of planning his own funeral. He was in Sales, so he went in and was bargaining about the cost of the casket and stuff like that. The Funeral director was mortified ;-). Maybe your Dad would like to be involved in the planning. Also it does help to plan these things before the chaotic end.
Make sure his friends and co-workers know. My Dad had a final Army ceremony when he was very sick and he loved seeing everyone. They all cried. He needs to say goodbye, so if people can see him try to help with that.
Just be there. Death can really be full of strength and beauty. It's probably one of the hardest things you will ever be involved in. Talk. Listen. Use your unique skill to do 50 things at once. Be content when there is nothing to do. Let people feed you and do little errands for you. Accept help. Be emotional. Be strong.
I don't know you but we share the same Commonwealth. If you need something you can find my email.
-A
posted by mogabog at 10:25 AM on May 15, 2006
Getting the will in order while you can is the best you can do. Don't forget family politics; you don't want anyone accusing you in two years of taking advantage of him, so make sure these things are done while he still has his facilities and can tell people this is what HE wanted. My family broke up under similar circumstances. They didn't believe my Dad would ever say those things... but he did.
In Mass we used Cranberry Hospice, they were amazing. Hospice will provide many things; beds, oxygen, etc. They are really amazing people, call them in, they will help you more than you can imagine.
It's hard for him to be dying, and he might need to talk things out. But as my Dad said, "I have the easy job, I'm dying - you have to live on." Anything you want to talk about, ask about, any information you think you might ever need, any stories you have not heard 20 times, ask them. Record what you can. In 5ive years when you are ready to look at it you will be happy to have it. Or else you can throw it away.
Join a support group. They might meet once a week or something, and seem kind of hokie. But knowing others are dealing with the same thing, and knowing you can call them and make morbid jokes about death or whatever was a great comfort to me. These are your war buddies.
My Dad got pleasure out of planning his own funeral. He was in Sales, so he went in and was bargaining about the cost of the casket and stuff like that. The Funeral director was mortified ;-). Maybe your Dad would like to be involved in the planning. Also it does help to plan these things before the chaotic end.
Make sure his friends and co-workers know. My Dad had a final Army ceremony when he was very sick and he loved seeing everyone. They all cried. He needs to say goodbye, so if people can see him try to help with that.
Just be there. Death can really be full of strength and beauty. It's probably one of the hardest things you will ever be involved in. Talk. Listen. Use your unique skill to do 50 things at once. Be content when there is nothing to do. Let people feed you and do little errands for you. Accept help. Be emotional. Be strong.
I don't know you but we share the same Commonwealth. If you need something you can find my email.
-A
posted by mogabog at 10:25 AM on May 15, 2006
Contact Compassion and Choices (dot org) to see whether there is a chapter in your area to offer care and advice. While your father may not choose to hasten his death, C&C also offers unique services to make sure that patients' pain is treated to the utmost that the law allows. They will also be able to guide you through the legal processes you described. They are wonderful, capable people and are essentially the go-to organization for all end-of-life matters.
posted by hermitosis at 9:50 PM on May 17, 2006 [1 favorite]
posted by hermitosis at 9:50 PM on May 17, 2006 [1 favorite]
This thread is closed to new comments.
i think you should consider getting counseling too ... this is going to be pretty rough
most of all, somewhere in all the time you spend with him, make sure you take some time for yourself ... get out, get away for a little bit and give yourself some breathing room ... you will need it ... there will be much help offered to you and you should accept it
be strong ... may god bless you both
posted by pyramid termite at 5:40 AM on May 12, 2006