Experiences with end of life
September 17, 2010 11:20 AM
Hospice and end of life: what to expect?
My dad has Lou Gehrig's. He's had Lou Gehrig's for a while. My mom called me a few hours ago to tell me to come home.
I'm flying out tonight, but what can I expect? He lost most mobility a while ago, as well as the ability to speak. He normally communicates with a letterboard but I don't think he's able to now. We've had home nurses for a while. Hospice is coming in tonight. He's being given morphine. My mom says it seems like he's in a lot of pain. It's not 100% like "oh, he is going to die tonight/this week", but it's very likely if my mom has told me to come home.
What is hospice going to do? What is it going to be like for him? How am I going to feel? I've cried a little, but mostly I'm just shaking and feel faint. I've tried for years to prepare myself for this, but I don't know what happens. Will I have to write the obituary? Who figures out things like the funeral home?
And who figures out things like the eulogy? I don't want to give one, but what if my mom wants me to? How do I write one? Give one?
I am 22, the oldest daughter. I have two siblings and a large extended family. My mom is still alive.
I have tried a few times to whittle this question down but I just don't know how. Basically: what is your experience after an immediate family member dies? What is my dad going through? What is he feeling? What can I expect to feel? What am I expected to do? How can I tell my friends? Who will tell me what is going to happen with my dad? Can I talk to his doctor without my mom?
My dad has Lou Gehrig's. He's had Lou Gehrig's for a while. My mom called me a few hours ago to tell me to come home.
I'm flying out tonight, but what can I expect? He lost most mobility a while ago, as well as the ability to speak. He normally communicates with a letterboard but I don't think he's able to now. We've had home nurses for a while. Hospice is coming in tonight. He's being given morphine. My mom says it seems like he's in a lot of pain. It's not 100% like "oh, he is going to die tonight/this week", but it's very likely if my mom has told me to come home.
What is hospice going to do? What is it going to be like for him? How am I going to feel? I've cried a little, but mostly I'm just shaking and feel faint. I've tried for years to prepare myself for this, but I don't know what happens. Will I have to write the obituary? Who figures out things like the funeral home?
And who figures out things like the eulogy? I don't want to give one, but what if my mom wants me to? How do I write one? Give one?
I am 22, the oldest daughter. I have two siblings and a large extended family. My mom is still alive.
I have tried a few times to whittle this question down but I just don't know how. Basically: what is your experience after an immediate family member dies? What is my dad going through? What is he feeling? What can I expect to feel? What am I expected to do? How can I tell my friends? Who will tell me what is going to happen with my dad? Can I talk to his doctor without my mom?
Oh, quadrilaterals, I am so sorry.
- Rule #1: you will not necessarily feel what you think you're "supposed" to feel, when you're "supposed" to feel it. But whatever you feel, whenever you feel it, will be healthy and natural and absolutely okay. For instance, my mom and her brothers - who ADORED their father - actually laughed a good deal after his funeral. It was just the way THEIR grief manifested.
- If he is under hospice care, the nurses should be keeping your dad as comfortable and free from pain and agitation that he can possibly be. If he DOES seem like he's in pain, let the nurses know.
- If the end is near, he will not necessarily be communicative (even by the standards of a late-stage ALS patient). He may drift in and out of consciousness.
- Dying patients do not necessarily need to eat and drink. This upsets some people, but in the very late stages, forcing food/water can do more harm than good.
- The hospice should guide you as far as what needs to be done in your father's last moments (nothing, usually, other than staying close to him and saying/doing what you need to say/do) and immediately after death (the nice thing about hospice is that there's no artificial sense of urgency about getting a mortician in there ASAP).
- You, your mom and siblings will need to talk about the obit, the funeral, etc. People can behave very differently while grieving and scared than they usually do. Not to harp on this AGAIN, but hospice nurses have seem things like this a billion times - one of the things they're good at, surprisingly, is dealing with the NON-dying during a loved one's final days.
Again, I am so, so sorry. I'll be thinking of you and your family.
posted by julthumbscrew at 11:41 AM on September 17, 2010
- Rule #1: you will not necessarily feel what you think you're "supposed" to feel, when you're "supposed" to feel it. But whatever you feel, whenever you feel it, will be healthy and natural and absolutely okay. For instance, my mom and her brothers - who ADORED their father - actually laughed a good deal after his funeral. It was just the way THEIR grief manifested.
- If he is under hospice care, the nurses should be keeping your dad as comfortable and free from pain and agitation that he can possibly be. If he DOES seem like he's in pain, let the nurses know.
- If the end is near, he will not necessarily be communicative (even by the standards of a late-stage ALS patient). He may drift in and out of consciousness.
- Dying patients do not necessarily need to eat and drink. This upsets some people, but in the very late stages, forcing food/water can do more harm than good.
- The hospice should guide you as far as what needs to be done in your father's last moments (nothing, usually, other than staying close to him and saying/doing what you need to say/do) and immediately after death (the nice thing about hospice is that there's no artificial sense of urgency about getting a mortician in there ASAP).
- You, your mom and siblings will need to talk about the obit, the funeral, etc. People can behave very differently while grieving and scared than they usually do. Not to harp on this AGAIN, but hospice nurses have seem things like this a billion times - one of the things they're good at, surprisingly, is dealing with the NON-dying during a loved one's final days.
Again, I am so, so sorry. I'll be thinking of you and your family.
posted by julthumbscrew at 11:41 AM on September 17, 2010
Oh wow. These types of situations will vary from family to family. When I think of the times I've dealt with this in my life, I often think of the incessant waiting. At times, minutes seem to stretch for days. It's like the dying person is a star in the process of collapsing and family are planets orbiting. It's a surreal juxtaposition of the enormity of the oncoming moment, and the base trivial matters like washing dishes. Strange mini dramas can play out when something happens like a flat tire, or a nurse comes in late. And you wait, and it all feels surreal. And you know it's going to happen, but how can it happen, and when will it happen, and oh my god can this just be over. But when it's over, won't the world end because all the oxygen will be sucked out of the universe, and everything will go black?
But it doesn't go black. In fact, after the person dies, there is generally a very handy mechanism that takes over, so that you don't need to do much. Likely, your parents have been preparing for this moment, and there is already a plan. So for the first few days you just move through a machine that doesn't require much more from you than showing up in designated places at a certain time.
Hospice will likely be very helpful to you. They are an amazing service that is focused on not just the dying person, but the entire family. They will be working to keep him as comfortable as possible. And they will be helping you and your family navigate the experience. Someone from hospice would probably be available to talk to you about what is going to happen with your dad.
Not all of your questions are unanswerable. Some people have intense immediate reactions to death, and are nearly incapacitated. Others have delayed, lingering grief processes. Some people seem unphased. There's no right or wrong way. It's just an immersive experience that you have to do. Time will help. It seems that there will never be enough time to cure an ache like that, but eventually it does.
I don't know what the expectations of you will be, but likely less than you think. You can tell your friends whatever you like, but "my dad just died" is probably the simplest. Everyone has to do this. Everyone experiences death. It's universal. I don't know if that's a comfort, but don't be worried about doing it wrong.
posted by kimdog at 11:53 AM on September 17, 2010
But it doesn't go black. In fact, after the person dies, there is generally a very handy mechanism that takes over, so that you don't need to do much. Likely, your parents have been preparing for this moment, and there is already a plan. So for the first few days you just move through a machine that doesn't require much more from you than showing up in designated places at a certain time.
Hospice will likely be very helpful to you. They are an amazing service that is focused on not just the dying person, but the entire family. They will be working to keep him as comfortable as possible. And they will be helping you and your family navigate the experience. Someone from hospice would probably be available to talk to you about what is going to happen with your dad.
Not all of your questions are unanswerable. Some people have intense immediate reactions to death, and are nearly incapacitated. Others have delayed, lingering grief processes. Some people seem unphased. There's no right or wrong way. It's just an immersive experience that you have to do. Time will help. It seems that there will never be enough time to cure an ache like that, but eventually it does.
I don't know what the expectations of you will be, but likely less than you think. You can tell your friends whatever you like, but "my dad just died" is probably the simplest. Everyone has to do this. Everyone experiences death. It's universal. I don't know if that's a comfort, but don't be worried about doing it wrong.
posted by kimdog at 11:53 AM on September 17, 2010
I'm so sorry to hear about your dad.
My experience with hospice is that they are very caring to both the patient and the family. My grandma used hospice during her final days. The workers helped take some of the terror way from the process. They are there to help and if you have any questions or concerns don't be afraid to ask.
During my grandma's last few days, she just slipped away. We could see her turning inward more and more. She was no longer concerned about the outside world. She would have moments where she paid attention to the people in her room, but mostly, she was turning inward. I think she was preparing herself to die peacefully. The hospice workers told us this was very common.
Your dad may not be able to focus on you during this time. Movies often portray people having very touching last moments together. In my experience, the person starts turning inward and no longer focuses on family. This can be very painful and I've experienced it with multiple people. I remember being desperate to get a loved one to talk to me one more time.
You can likely talk to your dad's doctor without your mom present. She will most likely have to give the doctor permission on your dad's behalf. I think it's reasonable for you to ask the doctor any questions you might have.
You do not have to give a eulogy. If you decide to though, you can make it short. You don't owe the people who attend the funeral a eulogy. They aren't going to be upset if you don't give one. Giving one is a very personal choice and only you can make it for yourself.
I've found that funeral homes will do as much or as little as you want. They can do everything for you (including making sure the obituary is posted). It's up to your family how much they want to be involved. For some people, it's too painful. For others, they find the experience helpful.
posted by parakeetdog at 12:12 PM on September 17, 2010
My experience with hospice is that they are very caring to both the patient and the family. My grandma used hospice during her final days. The workers helped take some of the terror way from the process. They are there to help and if you have any questions or concerns don't be afraid to ask.
During my grandma's last few days, she just slipped away. We could see her turning inward more and more. She was no longer concerned about the outside world. She would have moments where she paid attention to the people in her room, but mostly, she was turning inward. I think she was preparing herself to die peacefully. The hospice workers told us this was very common.
Your dad may not be able to focus on you during this time. Movies often portray people having very touching last moments together. In my experience, the person starts turning inward and no longer focuses on family. This can be very painful and I've experienced it with multiple people. I remember being desperate to get a loved one to talk to me one more time.
You can likely talk to your dad's doctor without your mom present. She will most likely have to give the doctor permission on your dad's behalf. I think it's reasonable for you to ask the doctor any questions you might have.
You do not have to give a eulogy. If you decide to though, you can make it short. You don't owe the people who attend the funeral a eulogy. They aren't going to be upset if you don't give one. Giving one is a very personal choice and only you can make it for yourself.
I've found that funeral homes will do as much or as little as you want. They can do everything for you (including making sure the obituary is posted). It's up to your family how much they want to be involved. For some people, it's too painful. For others, they find the experience helpful.
posted by parakeetdog at 12:12 PM on September 17, 2010
My experience with hospice as my mother died is that they are present to provide pain relief in whatever form that pain takes -- practical or emotional. Hospice care is usually handled as a team that comes and goes as they are needed. A doctor will check on your dad and direct his care, a nurse will do basic vitals checks and administer medications, and a chaplain can be there for comfort and moral support. You can speak with any of them privately. When your dad is physically hurting, they'll give him drugs -- and if you see it's not enough, you can call them as you need to ask for help. They'll check on him daily and try to prepare you for the speed at which things can happen. Some of that will be by talking, and some with pamphlets -- I found those especially helpful because they were so honest. In one instance, it explained the buzzy, watery breathing I was hearing was not my mom in pain, but what the body does as a person dies. In another, it explained that near the end, dying people often push away others, including those they love -- because something drives them to move inward as part of shutting down. By far the most helpful thing I learned is that someone at the very end will often seem to wait for a moment when they are completely alone to die. I was at my mother's side constantly, but when I briefly left to get a drink she slipped away. I was devastated with guilt until I read how common that was (and later had it confirmed by others who'd gone through the same thing).
All of which is to say you both can and can't get ready. This is hard work but it's human and good to be with a person you love as they face death. The best thing I can tell you is to not be afraid to be completely present during all of it and to let your heart guide you. Don't be afraid to touch, hold, hug, talk, sing -- whatever you think will reach and comfort him. Don't be afraid to advocate for more pain relief. Don't be afraid to do unusual things that feel right. I am not a praying person but when the hospice chaplain offered to pray for my mother with me I went right ahead, and it stands out as the only time I felt anything resembling peace.
The chaplain also guided me through the funeral arrangements -- it was especially helpful to have advice from someone very familiar with the businesses and options I'd be dealing with, so if that is something that isn't already planned out your family can get that assistance.
Call friends if you think that will help -- it helped me tremendously. Try not to be disappointed if people shy away. Some can't handle it, but those who can will be an ear for all the things you can't bring yourself to say to anyone close to what's happening.
Finally, once it's all over and you're still floating around wondering how to get back to the living world -- all the stupid trivia of daily life -- you'll start getting yet more pamphlets from the hospice folks. They'll be called things like "Twelve Meditations After Someone You Love is Gone" and maybe you'll think oh hell that's the last thing I need, but I found them so accurate. The stages of grief are real and it's easy to get stuck, so as more pamphlets arrive -- "It's Been 12 Weeks, How's it Going?" and "Six Months Later -- Still Pissed Off?" (I'm paraphrasing) you might find something in them that helps.
You're going to be ok. You're doing the right thing being there. Love your dad with all your might and let other people help you. Be gentle with yourself -- you aren't going to mess this up. Whether he can show it or not your dad will be comforted by hospice's medical care and by your presence. That's the only thing that matters -- that's the thing that stayed with me even after my mother was gone -- that before she left, she knew she was loved.
posted by melissa may at 12:19 PM on September 17, 2010
All of which is to say you both can and can't get ready. This is hard work but it's human and good to be with a person you love as they face death. The best thing I can tell you is to not be afraid to be completely present during all of it and to let your heart guide you. Don't be afraid to touch, hold, hug, talk, sing -- whatever you think will reach and comfort him. Don't be afraid to advocate for more pain relief. Don't be afraid to do unusual things that feel right. I am not a praying person but when the hospice chaplain offered to pray for my mother with me I went right ahead, and it stands out as the only time I felt anything resembling peace.
The chaplain also guided me through the funeral arrangements -- it was especially helpful to have advice from someone very familiar with the businesses and options I'd be dealing with, so if that is something that isn't already planned out your family can get that assistance.
Call friends if you think that will help -- it helped me tremendously. Try not to be disappointed if people shy away. Some can't handle it, but those who can will be an ear for all the things you can't bring yourself to say to anyone close to what's happening.
Finally, once it's all over and you're still floating around wondering how to get back to the living world -- all the stupid trivia of daily life -- you'll start getting yet more pamphlets from the hospice folks. They'll be called things like "Twelve Meditations After Someone You Love is Gone" and maybe you'll think oh hell that's the last thing I need, but I found them so accurate. The stages of grief are real and it's easy to get stuck, so as more pamphlets arrive -- "It's Been 12 Weeks, How's it Going?" and "Six Months Later -- Still Pissed Off?" (I'm paraphrasing) you might find something in them that helps.
You're going to be ok. You're doing the right thing being there. Love your dad with all your might and let other people help you. Be gentle with yourself -- you aren't going to mess this up. Whether he can show it or not your dad will be comforted by hospice's medical care and by your presence. That's the only thing that matters -- that's the thing that stayed with me even after my mother was gone -- that before she left, she knew she was loved.
posted by melissa may at 12:19 PM on September 17, 2010
close to home.
what is your experience after an immediate family member dies?
Sucks hard. But we all have the same "at least now (they) aren't suffering" thoughts.
What is my dad going through? What is he feeling?
I don't know that you could tell. But if he's on morphine, what ever he can feel will be dulled, foggy and pleasant. Things will seem far away and unimportant.
What can I expect to feel?
Everything from sadness to relief to guilt over laughing at the funny life stories people will tell at the funeral, sometimes in the same moment. The term roller-coaster comes to mind.
What am I expected to do?
Whatever you need to. Seriously, don't try to take on more than you can deal with. My close uncle passed and one adult child needed space and quiet to process it and didn't interact much with others at the time. The other wanted to get involved with details and spoke at the service. They both did the right thing.
And who figures out things like the eulogy? I don't want to give one, but what if my mom wants me to? How do I write one? Give one?
If your mom asks, Tell a story about how he made an impact on you. It can be minor or major, but minor things seem somehow more important. Doesn't have to be a huge deal - just something that reminds YOU of they kind of guy he was. Practice more than a few times so you don't break down too badly. If you're up to it, you can speak for your siblings - relay anything they want.
How can I tell my friends?
Directly, but without expectations. Some people who are otherwise very good friends can't cope with death. that was a bad shock, but its no ones fault.
Who will tell me what is going to happen with my dad? Can I talk to his doctor without my mom?
Hospice workers and nurses typically have the best grasp of the details due to the amount of interaction whereas a doctor might only see the patient once a day for 5 minutes. and I can't imagine a doc not answering questions about your father.
at some point, you will be gathered around with the extended family and friends talking about your dad. Ask everyone to tell a story about him that no one else knows. this happened at both my family's recent funerals and it was amazing.
posted by anti social order at 12:20 PM on September 17, 2010
what is your experience after an immediate family member dies?
Sucks hard. But we all have the same "at least now (they) aren't suffering" thoughts.
What is my dad going through? What is he feeling?
I don't know that you could tell. But if he's on morphine, what ever he can feel will be dulled, foggy and pleasant. Things will seem far away and unimportant.
What can I expect to feel?
Everything from sadness to relief to guilt over laughing at the funny life stories people will tell at the funeral, sometimes in the same moment. The term roller-coaster comes to mind.
What am I expected to do?
Whatever you need to. Seriously, don't try to take on more than you can deal with. My close uncle passed and one adult child needed space and quiet to process it and didn't interact much with others at the time. The other wanted to get involved with details and spoke at the service. They both did the right thing.
And who figures out things like the eulogy? I don't want to give one, but what if my mom wants me to? How do I write one? Give one?
If your mom asks, Tell a story about how he made an impact on you. It can be minor or major, but minor things seem somehow more important. Doesn't have to be a huge deal - just something that reminds YOU of they kind of guy he was. Practice more than a few times so you don't break down too badly. If you're up to it, you can speak for your siblings - relay anything they want.
How can I tell my friends?
Directly, but without expectations. Some people who are otherwise very good friends can't cope with death. that was a bad shock, but its no ones fault.
Who will tell me what is going to happen with my dad? Can I talk to his doctor without my mom?
Hospice workers and nurses typically have the best grasp of the details due to the amount of interaction whereas a doctor might only see the patient once a day for 5 minutes. and I can't imagine a doc not answering questions about your father.
at some point, you will be gathered around with the extended family and friends talking about your dad. Ask everyone to tell a story about him that no one else knows. this happened at both my family's recent funerals and it was amazing.
posted by anti social order at 12:20 PM on September 17, 2010
quadrilaterals, I am so, so sorry. [internet hug]
I lost my father when I was 21. I have some thoughts about some, but not all, of your questions. At work right now and I don't have time to respond. I'll try to write more tonight or tomorrow, but, if you are so inclined, memail me and I'll respond. I'll give you my phone number if you want it.
posted by teragram at 12:48 PM on September 17, 2010
I lost my father when I was 21. I have some thoughts about some, but not all, of your questions. At work right now and I don't have time to respond. I'll try to write more tonight or tomorrow, but, if you are so inclined, memail me and I'll respond. I'll give you my phone number if you want it.
posted by teragram at 12:48 PM on September 17, 2010
Atul Gawande had a very positive take on Hospice in this recent New Yorker article.
posted by david1230 at 12:50 PM on September 17, 2010
posted by david1230 at 12:50 PM on September 17, 2010
I can't tell you what you are going to feel, what you can expect. There are common arches to loosing a parent, to watching them die. But those commonalities evaporate when confronted with loosing Your parent. To watching Your parent die.
So I'll tell you about watching my father die. About his hospice care and how I felt.
The center my dad was in was aggressively pain-management oriented. They had him on morphine, fentanyl patches, amitriptyline to keep secretions to a minimum so he would not choke. We decided not to put in a feeding tube - he didn't want it. We decided not to give him IV fluids. His kidneys were shutting down, since his body had no way to eliminate the fluid, it would eventually pool in his lungs and effectively drown him. He was so hopped up on pain medication that he seemed to us as if he were in a coma. This was an excruciating decision for me. I adored my father and wanted any last slice if him I could get, even if it was just a few fleeting seconds of recognition. Yet I knew that if he was aware enough to have those few seconds with me, he has was also going to be in tremendous pain. I left the room when they did scary things to him. You'll know what those are when you need to and you'll know if you should stay or not when you need to.
Since we didn't know if he could hear us, we did not talk about him in front of him. I insisted we go into the hall if we need to discuss him.
The hospice center took as good a care of my mother and I as they did my father. That's what they do. I will forever be humbled and grateful that strangers could treat us with such kindness and compassion. I hope you have that. I hope you have people who will be good to you - gentle, sweet, kind. I hope you have folks who will take care of you.
Try to resist the urge to keep constant vigil. Few people can maintain that level of stress over days and weeks. You must sleep. You must eat. You must take breaks, take turns.
In my dad's last day or two his breathing became very irregular - jagged, sometimes very slow, sometimes quick. This was the hardest part for me. I sat by his side for hours watching him breathe. Every time there was a pause, my heart jumped into my throat wondering if that was his last breath. In the end I could not take the stress - I was utterly frayed, exhausted, unspeakably sad. I had to decide to not spend the night every night, that I had to go on walks and take the chance that he would die without me.
Before he went completely under I wrote and read to him a very long letter about how much I loved him, about what he gave me, my favorite memories of him and what of his I would always carry with me. I cried the whole ten pages of it, cried when I read it to him. I cry when I think about it too long.
The whole time I was scared. I was devastated, even though I had known for months that this moment would soon be upon us. I felt selfish that even in his coma like state, I wanted him here, with me. That seemed better to me than him being gone. At the same time I was utterly determined to make sure that I saw my father through his death to the length that he wanted me. I felt like it was my last duty as his daughter, the last thing I could give him. Nearly everyone in the hospice center said that people die, they let go, when they want to. If they want to die with their loved ones around, they will. If they want to be alone, they'll wait until you step away for coffee or the bathroom.
I'm so sorry you have to go through this. You're so young to loose a parent. This will be very hard, but you can do it. Lean on the people you love and trust. Let them take care of you. Cry, be angry, be sad, be relieved or ambivalent, or numb or confused or whatever it is you are at the moment. It will likely change many times throughout the days to come.
One last piece of advice. Do whatever you must to finish any lingering business with your dad. Try to finish it in a way that you will feel good about in the years to come while at the same time leaving room for regrets. Everyone has them.
Sorry this is so long.
Take Care. I wish you the best.
s_c
posted by space_cookie at 1:02 PM on September 17, 2010
So I'll tell you about watching my father die. About his hospice care and how I felt.
The center my dad was in was aggressively pain-management oriented. They had him on morphine, fentanyl patches, amitriptyline to keep secretions to a minimum so he would not choke. We decided not to put in a feeding tube - he didn't want it. We decided not to give him IV fluids. His kidneys were shutting down, since his body had no way to eliminate the fluid, it would eventually pool in his lungs and effectively drown him. He was so hopped up on pain medication that he seemed to us as if he were in a coma. This was an excruciating decision for me. I adored my father and wanted any last slice if him I could get, even if it was just a few fleeting seconds of recognition. Yet I knew that if he was aware enough to have those few seconds with me, he has was also going to be in tremendous pain. I left the room when they did scary things to him. You'll know what those are when you need to and you'll know if you should stay or not when you need to.
Since we didn't know if he could hear us, we did not talk about him in front of him. I insisted we go into the hall if we need to discuss him.
The hospice center took as good a care of my mother and I as they did my father. That's what they do. I will forever be humbled and grateful that strangers could treat us with such kindness and compassion. I hope you have that. I hope you have people who will be good to you - gentle, sweet, kind. I hope you have folks who will take care of you.
Try to resist the urge to keep constant vigil. Few people can maintain that level of stress over days and weeks. You must sleep. You must eat. You must take breaks, take turns.
In my dad's last day or two his breathing became very irregular - jagged, sometimes very slow, sometimes quick. This was the hardest part for me. I sat by his side for hours watching him breathe. Every time there was a pause, my heart jumped into my throat wondering if that was his last breath. In the end I could not take the stress - I was utterly frayed, exhausted, unspeakably sad. I had to decide to not spend the night every night, that I had to go on walks and take the chance that he would die without me.
Before he went completely under I wrote and read to him a very long letter about how much I loved him, about what he gave me, my favorite memories of him and what of his I would always carry with me. I cried the whole ten pages of it, cried when I read it to him. I cry when I think about it too long.
The whole time I was scared. I was devastated, even though I had known for months that this moment would soon be upon us. I felt selfish that even in his coma like state, I wanted him here, with me. That seemed better to me than him being gone. At the same time I was utterly determined to make sure that I saw my father through his death to the length that he wanted me. I felt like it was my last duty as his daughter, the last thing I could give him. Nearly everyone in the hospice center said that people die, they let go, when they want to. If they want to die with their loved ones around, they will. If they want to be alone, they'll wait until you step away for coffee or the bathroom.
I'm so sorry you have to go through this. You're so young to loose a parent. This will be very hard, but you can do it. Lean on the people you love and trust. Let them take care of you. Cry, be angry, be sad, be relieved or ambivalent, or numb or confused or whatever it is you are at the moment. It will likely change many times throughout the days to come.
One last piece of advice. Do whatever you must to finish any lingering business with your dad. Try to finish it in a way that you will feel good about in the years to come while at the same time leaving room for regrets. Everyone has them.
Sorry this is so long.
Take Care. I wish you the best.
s_c
posted by space_cookie at 1:02 PM on September 17, 2010
I'm so sorry. I can't answer any of the questions about hospice, because when my father died (when I was your exact age) it was very sudden.
I found some comfort in staying very busy. I made up the service program, worked on the obituary, and helped with the service. Your priest or minister will likely be able to help you with anything you need, including the funeral home.
A last piece of odd advice, but hopefully of help - let other people help as much as you can. Even if its asking one cousin to make some calls, and another to take out the trash, and someone else to start a list of what's needed for the viewing (or whatever). Anything you can give people to do that is a concrete task, even if its - make a list of concrete tasks - lets them help, and takes something of your and your mother's lists. And I found that quite a number of people wanted to help, didn't know what to do, and were grateful for having a specific thing to do.
Best of luck with all of it, and please take care of yourself.
posted by korej at 1:32 PM on September 17, 2010
I found some comfort in staying very busy. I made up the service program, worked on the obituary, and helped with the service. Your priest or minister will likely be able to help you with anything you need, including the funeral home.
A last piece of odd advice, but hopefully of help - let other people help as much as you can. Even if its asking one cousin to make some calls, and another to take out the trash, and someone else to start a list of what's needed for the viewing (or whatever). Anything you can give people to do that is a concrete task, even if its - make a list of concrete tasks - lets them help, and takes something of your and your mother's lists. And I found that quite a number of people wanted to help, didn't know what to do, and were grateful for having a specific thing to do.
Best of luck with all of it, and please take care of yourself.
posted by korej at 1:32 PM on September 17, 2010
I am sorry that you have to go through this. Then again, many people go through it every day.
That does not make it easier or more difficult.
I have been through this three times in the last few years with my mother and both in-laws.
Each and every situation is different. There is no wrong reaction, feeling, or anything else.
The funeral home people should be able to help with the obit. Ask the hospice people for help with nearly anything, that is what they are trained to do. They also usually have many resources to guide those in your situation.
At this point you must also care for yourself and the family members that are still around you. Seek their aid in making decisions. Some will want to avoid the subject others will step up and help as a way of acknowledging the pain. Also, make sure that you eat, get rest, etc. This is a MUST. If you do not, it makes you more vulnerable to depression and overwhelming grief.)
Do not worry about what others think of your behavior. They are too busy worrying about themselves. Go with your gut feeling about the eulogy. If you work better with preparation, get something ready, even if you don't use it.
Your memory of this episode in life will be changed somewhat by time. You will forget or even block out some of the bad parts and remember what may seem like the most insignificant things.
Be sure to allow for the grieving process which will take some time. It is different for everyone and every situation.
PLEASE feel free to contact me if you have any questions at all or if you just need to vent.
I wish you the best.
posted by Drasher at 1:39 PM on September 17, 2010
That does not make it easier or more difficult.
I have been through this three times in the last few years with my mother and both in-laws.
Each and every situation is different. There is no wrong reaction, feeling, or anything else.
The funeral home people should be able to help with the obit. Ask the hospice people for help with nearly anything, that is what they are trained to do. They also usually have many resources to guide those in your situation.
At this point you must also care for yourself and the family members that are still around you. Seek their aid in making decisions. Some will want to avoid the subject others will step up and help as a way of acknowledging the pain. Also, make sure that you eat, get rest, etc. This is a MUST. If you do not, it makes you more vulnerable to depression and overwhelming grief.)
Do not worry about what others think of your behavior. They are too busy worrying about themselves. Go with your gut feeling about the eulogy. If you work better with preparation, get something ready, even if you don't use it.
Your memory of this episode in life will be changed somewhat by time. You will forget or even block out some of the bad parts and remember what may seem like the most insignificant things.
Be sure to allow for the grieving process which will take some time. It is different for everyone and every situation.
PLEASE feel free to contact me if you have any questions at all or if you just need to vent.
I wish you the best.
posted by Drasher at 1:39 PM on September 17, 2010
Thank you all, so much. I want to go through and thank you individually, and please know that I would if I could right now.
I don't take off until 7:30 and I'm terrified that I won't get to see him. I talked to my sister and everything is worse than I was imagining. I wish this wasn't real. Thank you all so, so, so much for giving me something to hold on to while I sit here and wait.
posted by quadrilaterals at 1:52 PM on September 17, 2010
I don't take off until 7:30 and I'm terrified that I won't get to see him. I talked to my sister and everything is worse than I was imagining. I wish this wasn't real. Thank you all so, so, so much for giving me something to hold on to while I sit here and wait.
posted by quadrilaterals at 1:52 PM on September 17, 2010
I hope whatever transpires happens in a way that's easy for your father, your family and you.
After my father died, we each took primary responsibility for whichever aspect of the aftermath corresponded to our skills and the obituary writing fell to me. My goal was to intrigue the obituary page editor enough so s/he featured my father's death in an article, as opposed to a simple (or paid) death notice. To that end, I mixed professional information, anecdotes epitomizing aspects of his character (including how he faced adversity), and the usual personal information (survivors, college, cause of death, where to send donations, etc.). I tried for a tone that reflected his personality. At the bottom, formatted so it was easy to find, I listed contact info for people corresponding to his various realms who could provide quotes or further information.
I sent the text to the obituary staff at:
the local big city paper
the suburban paper where he lived while we were growing up
the suburban paper where he lived when he died
the paper in his home town
his alumni magazines
his field's professional journals
the New York Times (because I knew it would please my mother if the NYT noted his death, and it did)
I tweaked the core text to adjust the emphasis based on each paper's readership and I updated his Wikipedia page. In most cases, you can find the proper e-mail address by searching the paper's website. Basically, the better the paper, the more independent research they conducted. The NYT and the local big city paper took my work as a departure point and contacted others to get different quotes and anecdotes. The small town papers basically published my work verbatim or cribbed from Wikipedia (or, in one case, introducing errors via poor editing in an attempt to make it different). The rest were somewhere in between. IIRC, they all called to confirm his death but did not ask for proof.
I must say, it was a nice thing for my mother to hear from people that they had enjoyed learning x about him by reading his obituary. The obituaries probably drove attendance to his memorial, and also cards/letters of solace and remembrance, which also pleased her. In your father's case, the obituary you write offers an opportunity to remind/inform people about what he was like before ALS took its toll.
Take care of yourself.
posted by carmicha at 2:07 PM on September 17, 2010
After my father died, we each took primary responsibility for whichever aspect of the aftermath corresponded to our skills and the obituary writing fell to me. My goal was to intrigue the obituary page editor enough so s/he featured my father's death in an article, as opposed to a simple (or paid) death notice. To that end, I mixed professional information, anecdotes epitomizing aspects of his character (including how he faced adversity), and the usual personal information (survivors, college, cause of death, where to send donations, etc.). I tried for a tone that reflected his personality. At the bottom, formatted so it was easy to find, I listed contact info for people corresponding to his various realms who could provide quotes or further information.
I sent the text to the obituary staff at:
the local big city paper
the suburban paper where he lived while we were growing up
the suburban paper where he lived when he died
the paper in his home town
his alumni magazines
his field's professional journals
the New York Times (because I knew it would please my mother if the NYT noted his death, and it did)
I tweaked the core text to adjust the emphasis based on each paper's readership and I updated his Wikipedia page. In most cases, you can find the proper e-mail address by searching the paper's website. Basically, the better the paper, the more independent research they conducted. The NYT and the local big city paper took my work as a departure point and contacted others to get different quotes and anecdotes. The small town papers basically published my work verbatim or cribbed from Wikipedia (or, in one case, introducing errors via poor editing in an attempt to make it different). The rest were somewhere in between. IIRC, they all called to confirm his death but did not ask for proof.
I must say, it was a nice thing for my mother to hear from people that they had enjoyed learning x about him by reading his obituary. The obituaries probably drove attendance to his memorial, and also cards/letters of solace and remembrance, which also pleased her. In your father's case, the obituary you write offers an opportunity to remind/inform people about what he was like before ALS took its toll.
Take care of yourself.
posted by carmicha at 2:07 PM on September 17, 2010
I'm saying prayers for your family and you right now. I've lost some family members and mostly remember feeling detached. Don't force yourself to feel or not-feel anything. Whatever you want is RIGHT and OKAY. Just don't shut it out for too long. It's perfectly normal to think and worry and wonder and cry. Don't just say "this happens" and close that chapter of your life. Give yourself time to think and grieve - but DO think and grieve.
Now, here's the thing. If you feel at all comfortable or capable...just offer help. There is so much to be done. Simply ask everyone quietly and confidently: "Let me know if I can help...with anything."
Everyone is so stigmatized at this stage of life. You can be a blessing to everyone - just ask and be open.
posted by carlh at 3:31 PM on September 17, 2010
Now, here's the thing. If you feel at all comfortable or capable...just offer help. There is so much to be done. Simply ask everyone quietly and confidently: "Let me know if I can help...with anything."
Everyone is so stigmatized at this stage of life. You can be a blessing to everyone - just ask and be open.
posted by carlh at 3:31 PM on September 17, 2010
There are so many good answers above that I don't have much to add. The one thing I remember distinctly from being at the house immediately after my grandfather died (when I went out to the store) was a tremendous sense of relief and peace. It seemed to affect everyone there at the house and things happened as they needed to. When friends and other family came they were sad and grieving and shocked he had died so quickly. I remember it seeming hard but really natural. I continue to miss him at odd times, but that sense of peace was an amazing comfort. Take good care of yourself and your family and safe travels tonight. It is an incredible and terrifying time you are going through.
posted by bookrach at 5:12 PM on September 17, 2010
posted by bookrach at 5:12 PM on September 17, 2010
Oh man, I'm so sorry. And weird because I had coffee this morning with a friend where we're both in the 12-18 month zone after a parent died. We were talking about some of this stuff just this morning.
A lot of good advice. Just my anecdotal experience (father died at in-home hospice after long decline), but while grief is a universal experience how people react to it and handle the experience is idiosyncratic. Personally, once I'd finally gotten over the pit of the stomach "Oh shit, this is horrible and it's happening and I can't stop it" reaction, I became detached and just tried to do my best for him in his last few days. Like talking to him and telling him how he'd been a great dad, that I loved him, & how he'd always be with me.
It's really hard to *not* think about what somebody is experiencing at the end of life. It really ate at me for the first 6 months after his death and I know from other friends' comments, they had a lot of guilt/wondering what if over the possible pain/distress their loved one was experiencing. That's pretty common, just how you come to terms with is always different. I still have moments of feeling those horrible thoughts. What finally gave me peace was to see it as his final lesson, teaching me that I was strong and that I could get through the experience.
I felt pretty detached while he was dying, but once it happened (I was alone in the room with him) and I had to call in the Death Certificate and make arrangements for the body, then all the emotions came back. I broke down that evening and cried my eyes out, but so far I'm the only person in the immediate family to openly cry. My mother's way of reacting has been depression and my siblings want to avoid the topic completely. Funny thing - I feel like going through that upfront, I'm much better now. Versus everybody else finally coming out of shock and feeling even worse because he's been gone for a year.
In terms of other practical stuff:
* The last two days I made a point of chasing down any of his local friends & neighbors with the news, so they could come to his bedside. Mostly it was for him, but I think it also really helped those friends with their grief.
* I also made arrangements for his doctor and a chaplain to come see him. Again, great deal of comfort for him.
* Wrote the obituary. One warning - newspapers charge $$$ for listings. Unfortunately I was too in shock/tired to write it right away and get into the local news (which will run for free). The original draft would've cost $1200 and since my dad was frugal, I trimmed it back to run for $600. Prices on obits are ridiculous.
* Don't let the funeral home pressure you into spending any money you don't have or think the departed wouldn't want you to spend. We made arrangements (ahead of time w/out my dad's knowledge) for a funeral home close by to pick up the body and do a cremation. Total cost of those services, plus the Death Certificate was $1200. The urn was from Costco for $100 and we made the funeral program ourselves with help from a family friend who's a graphic designer. If people can have weddings on a shoestring budget, why not funerals? Plus again he was frugal and if we'd blown a lot of money on these services, his ghost would've come back to haunt us about it ;).
* Check and double check everything you put on the death certificate. Because anything that's wrong will cost you money and time to get fixed. And in my situation, getting the amendment with the correct information took 11 months (?!?) because it fell through the cracks due to California's budget cuts and furloughs.
* Same with health insurance policies. Get the paperwork and death certificate in and hound them to verify. My mom got charged for his monthly insurance premium for a year ($2600) until it was finally resolved.
That's all I can think and I'm so sorry. Just be there and let him know that he lived a good life, was a good dad and that you loved him.
posted by gov_moonbeam at 5:57 PM on September 17, 2010
A lot of good advice. Just my anecdotal experience (father died at in-home hospice after long decline), but while grief is a universal experience how people react to it and handle the experience is idiosyncratic. Personally, once I'd finally gotten over the pit of the stomach "Oh shit, this is horrible and it's happening and I can't stop it" reaction, I became detached and just tried to do my best for him in his last few days. Like talking to him and telling him how he'd been a great dad, that I loved him, & how he'd always be with me.
It's really hard to *not* think about what somebody is experiencing at the end of life. It really ate at me for the first 6 months after his death and I know from other friends' comments, they had a lot of guilt/wondering what if over the possible pain/distress their loved one was experiencing. That's pretty common, just how you come to terms with is always different. I still have moments of feeling those horrible thoughts. What finally gave me peace was to see it as his final lesson, teaching me that I was strong and that I could get through the experience.
I felt pretty detached while he was dying, but once it happened (I was alone in the room with him) and I had to call in the Death Certificate and make arrangements for the body, then all the emotions came back. I broke down that evening and cried my eyes out, but so far I'm the only person in the immediate family to openly cry. My mother's way of reacting has been depression and my siblings want to avoid the topic completely. Funny thing - I feel like going through that upfront, I'm much better now. Versus everybody else finally coming out of shock and feeling even worse because he's been gone for a year.
In terms of other practical stuff:
* The last two days I made a point of chasing down any of his local friends & neighbors with the news, so they could come to his bedside. Mostly it was for him, but I think it also really helped those friends with their grief.
* I also made arrangements for his doctor and a chaplain to come see him. Again, great deal of comfort for him.
* Wrote the obituary. One warning - newspapers charge $$$ for listings. Unfortunately I was too in shock/tired to write it right away and get into the local news (which will run for free). The original draft would've cost $1200 and since my dad was frugal, I trimmed it back to run for $600. Prices on obits are ridiculous.
* Don't let the funeral home pressure you into spending any money you don't have or think the departed wouldn't want you to spend. We made arrangements (ahead of time w/out my dad's knowledge) for a funeral home close by to pick up the body and do a cremation. Total cost of those services, plus the Death Certificate was $1200. The urn was from Costco for $100 and we made the funeral program ourselves with help from a family friend who's a graphic designer. If people can have weddings on a shoestring budget, why not funerals? Plus again he was frugal and if we'd blown a lot of money on these services, his ghost would've come back to haunt us about it ;).
* Check and double check everything you put on the death certificate. Because anything that's wrong will cost you money and time to get fixed. And in my situation, getting the amendment with the correct information took 11 months (?!?) because it fell through the cracks due to California's budget cuts and furloughs.
* Same with health insurance policies. Get the paperwork and death certificate in and hound them to verify. My mom got charged for his monthly insurance premium for a year ($2600) until it was finally resolved.
That's all I can think and I'm so sorry. Just be there and let him know that he lived a good life, was a good dad and that you loved him.
posted by gov_moonbeam at 5:57 PM on September 17, 2010
Hi. I am a professional funeral director in a third-generation family owned funeral home. I've assisted many MetaFilter members with end of life issues. If you'd like to talk to someone about the logistics of hospice or funeral planning, I've MeMailed you my personal cell phone number. Call me any time, day or night.
There are a lot of things to consider, and it can all be very overwhelming. I can clear a bit of that fog for you, and I'm always happy to help.
posted by ColdChef at 6:11 PM on September 17, 2010
There are a lot of things to consider, and it can all be very overwhelming. I can clear a bit of that fog for you, and I'm always happy to help.
posted by ColdChef at 6:11 PM on September 17, 2010
Or, if you'd rather talk by email, mine's in my profile. Again, don't hesitate to call if you want to.
posted by ColdChef at 6:12 PM on September 17, 2010
posted by ColdChef at 6:12 PM on September 17, 2010
I'm so sorry that you're dealing with this. You, and your dad, and your family, are in some extra prayers tonight.
I'm glad you have hospice involved.
If you have some time to read, I thought this article in the New Yorker, about what medicine should do when it can't "cure" was interesting and helpful -- it talks some about how hospice works. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all
posted by dpx.mfx at 6:24 PM on September 17, 2010
I'm glad you have hospice involved.
If you have some time to read, I thought this article in the New Yorker, about what medicine should do when it can't "cure" was interesting and helpful -- it talks some about how hospice works. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all
posted by dpx.mfx at 6:24 PM on September 17, 2010
I would echo much of what is being said here.
When my father was in the hospital, near the end, I left his room late one night to head home and ended up talking for a moment with the young guy running the valet parking desk. While they were getting my car he asked something like "What are you here for?" I replied "My Dad has cancer." He asked, "How is he?" I said, "He's dying." The parking guy paused for a moment and said "I'm really sorry. Just pray and everything will be okay."
It sounds trite, especially since I'm not particularly religious, but that last comment really resonated with me: Somebody can die and everything can still be okay. That was a few years ago and it turned out that the parking guy was right. My father did die, just a couple of days later, and yet somehow everything turned out okay. I still miss him terribly, especially given my own personal problems of late, but I've come to accept the way things happened as just part of a long, long story spanning many decades. And something else happened too: Soon after he died my father transformed in my mind. No longer was he the gaunt and delicate old man in terrible pain that he had become in his last days. The memories of that are still fresh, of course, but now when I think of him he is once again in the prime of life, vigorous and always ready to comfort me when I'm sick, tell me my favorite stories, or help out with a project.
I'm sure he loves you very much and always will.
posted by LastOfHisKind at 10:37 PM on September 17, 2010
When my father was in the hospital, near the end, I left his room late one night to head home and ended up talking for a moment with the young guy running the valet parking desk. While they were getting my car he asked something like "What are you here for?" I replied "My Dad has cancer." He asked, "How is he?" I said, "He's dying." The parking guy paused for a moment and said "I'm really sorry. Just pray and everything will be okay."
It sounds trite, especially since I'm not particularly religious, but that last comment really resonated with me: Somebody can die and everything can still be okay. That was a few years ago and it turned out that the parking guy was right. My father did die, just a couple of days later, and yet somehow everything turned out okay. I still miss him terribly, especially given my own personal problems of late, but I've come to accept the way things happened as just part of a long, long story spanning many decades. And something else happened too: Soon after he died my father transformed in my mind. No longer was he the gaunt and delicate old man in terrible pain that he had become in his last days. The memories of that are still fresh, of course, but now when I think of him he is once again in the prime of life, vigorous and always ready to comfort me when I'm sick, tell me my favorite stories, or help out with a project.
I'm sure he loves you very much and always will.
posted by LastOfHisKind at 10:37 PM on September 17, 2010
Soon after he died my father transformed in my mind. No longer was he the gaunt and delicate old man in terrible pain that he had become in his last days. The memories of that are still fresh, of course, but now when I think of him he is once again in the prime of life, vigorous and always ready to comfort me when I'm sick, tell me my favorite stories, or help out with a project
Thank you so much for that statement. That was my experience the last months, of seeing my dad deteriorate. But after he died, it was like the temporary amnesia passed and I could finally remember him again as he was as a healthy, engaged person.
posted by gov_moonbeam at 11:11 AM on September 18, 2010
Thank you so much for that statement. That was my experience the last months, of seeing my dad deteriorate. But after he died, it was like the temporary amnesia passed and I could finally remember him again as he was as a healthy, engaged person.
posted by gov_moonbeam at 11:11 AM on September 18, 2010
I'm so sorry about your father. I just lost my stepfather last month to cancer, and hospice was wonderful.
Their main concern is to keep your father from feeling too much pain, and to keep him as comfortable as possible as he passes. They should have a bunch of pamphlets lying around, which detail the steps your father will go through. Read them.
The last couple of days, my stepfather turned completely inward. It's fairly normal if your father does this. They said that he could still hear us, so we would go into his room, talk to him (never about him), and play his favorite music. His breathing became very shallow, in short gasps, and that's how we knew he didn't have much longer. He was a religious man, so we called the pastor and he came over to pray with us. My mother and his oldest daughter spent the night in his room, and were there for his last breath.
Once he died, my mother called hospice, and they took care of contacting the funeral home, who then took care of everything else. It's almost comforting at that point to have something to plan. We worked on the obit as a family, and then spent the next day picking pictures and music for his wake.
It's hard. I think the most difficult thing is recognizing how much your life has just changed, while everyone else is still dealing with regular life, complaining about petty things. I avoided facebook for a good couple of weeks because of this, but ymmv. Please don't feel guilty for laughing at times, or for feeling relieved once he dies. My stepfather was such a strong, vital man, and it was so painful to see him ravaged by cancer, that I was relieved to see him out of pain.
Again, I'm so sorry. I wish your family strength and comfort. Feel free to memail me if you need someone to talk to.
posted by jnaps at 3:33 PM on September 21, 2010
Their main concern is to keep your father from feeling too much pain, and to keep him as comfortable as possible as he passes. They should have a bunch of pamphlets lying around, which detail the steps your father will go through. Read them.
The last couple of days, my stepfather turned completely inward. It's fairly normal if your father does this. They said that he could still hear us, so we would go into his room, talk to him (never about him), and play his favorite music. His breathing became very shallow, in short gasps, and that's how we knew he didn't have much longer. He was a religious man, so we called the pastor and he came over to pray with us. My mother and his oldest daughter spent the night in his room, and were there for his last breath.
Once he died, my mother called hospice, and they took care of contacting the funeral home, who then took care of everything else. It's almost comforting at that point to have something to plan. We worked on the obit as a family, and then spent the next day picking pictures and music for his wake.
It's hard. I think the most difficult thing is recognizing how much your life has just changed, while everyone else is still dealing with regular life, complaining about petty things. I avoided facebook for a good couple of weeks because of this, but ymmv. Please don't feel guilty for laughing at times, or for feeling relieved once he dies. My stepfather was such a strong, vital man, and it was so painful to see him ravaged by cancer, that I was relieved to see him out of pain.
Again, I'm so sorry. I wish your family strength and comfort. Feel free to memail me if you need someone to talk to.
posted by jnaps at 3:33 PM on September 21, 2010
Thank you all. My dad died this morning, relatively peacefully. The answers in this thread were a comfort to me.
posted by quadrilaterals at 9:03 AM on September 24, 2010
posted by quadrilaterals at 9:03 AM on September 24, 2010
I'm so sorry, quadrilaterals. Sending hugs and good thoughts for you and your family.
posted by julthumbscrew at 9:21 AM on September 24, 2010
posted by julthumbscrew at 9:21 AM on September 24, 2010
This thread is closed to new comments.
I only have a bit to offer by way of funeral homes/eulogies... From what I can tell, eulogies are done on a voluntary basis, but your mom may want you to say something. You don't HAVE to, of course, but you may change your mind once the time comes. Whatever you say will be fine, so don't worry about nerves or sounding "wrong." Usually they're written/spoken from the heart and include things about your dad's life, his personality traits, how he was to you as a father, etc. More a celebratory thing than a sad thing.
The funeral home people figure all the funeral home things out. They are incredibly helpful and wonderful people, who make the process as easy as it can be. Your dad probably has a lot of these things already settled, in a will or another sort of "this is what I want" document.
Best wishes to you and yours during this difficult time.
posted by slyboots421 at 11:35 AM on September 17, 2010