Waiting, waiting, waiting....
August 27, 2012 5:29 PM Subscribe
My mother is going to die, probably very soon. How do I deal with waiting for it to happen?
My mom is dying of cancer. She is only 61. She was diagnosed with colon cancer last year, and was doing well until about a month ago, when she began to decline quickly. Surgery two weeks ago revealed that her cancer had spread all over her intestines and stomach, and is, at this point untreatable.
She was given a week to live, and I went back to my hometown on the other side of the state to help deal with things. She was placed in a hospice, where she got (and is still getting) excellent care. We had a lot of the necessary conversations (about her will, services, etc.) while I was there. She is comfortable, and in a good place mentally. She has a lot of my family members around to visit and take care of things. I am visiting whenever I can, and talk to her on the phone every day. But she's still dying, and I don't know how to deal with the weirdness of waiting for it to happen.
I am pretty lucky. I have a lot of friends I can talk to, who have been really great over the last few weeks. The people I work with have been really understanding (both of my need to visit her and my need to get engrossed in work when I am back in the office). But I feel like I'm really on my own here. No one I know my age has lost a parent (I'm 38). I've lost friends and grandparents and several beloved dogs, but this feels really, really different. I've been so focused on either taking care of things for my mom or work the last few weeks that I haven't had time to really think about what's going on, until now.
My question is: for those of you who've gone through this, what helped you cope with waiting for one of your parents (or other loved one) to die? Were there websites or books that you read? Other coping strategies that helped you? (I'm trying to avoid my usual coping strategies of beer, Internet shopping and salty foods.) There seem to be a lot of resources for what happens after someone you love dies, but not much on what happens before that. I know things will be worse once she passes, but things are very weird now, and I'm not sure how best to cope.
My mom is dying of cancer. She is only 61. She was diagnosed with colon cancer last year, and was doing well until about a month ago, when she began to decline quickly. Surgery two weeks ago revealed that her cancer had spread all over her intestines and stomach, and is, at this point untreatable.
She was given a week to live, and I went back to my hometown on the other side of the state to help deal with things. She was placed in a hospice, where she got (and is still getting) excellent care. We had a lot of the necessary conversations (about her will, services, etc.) while I was there. She is comfortable, and in a good place mentally. She has a lot of my family members around to visit and take care of things. I am visiting whenever I can, and talk to her on the phone every day. But she's still dying, and I don't know how to deal with the weirdness of waiting for it to happen.
I am pretty lucky. I have a lot of friends I can talk to, who have been really great over the last few weeks. The people I work with have been really understanding (both of my need to visit her and my need to get engrossed in work when I am back in the office). But I feel like I'm really on my own here. No one I know my age has lost a parent (I'm 38). I've lost friends and grandparents and several beloved dogs, but this feels really, really different. I've been so focused on either taking care of things for my mom or work the last few weeks that I haven't had time to really think about what's going on, until now.
My question is: for those of you who've gone through this, what helped you cope with waiting for one of your parents (or other loved one) to die? Were there websites or books that you read? Other coping strategies that helped you? (I'm trying to avoid my usual coping strategies of beer, Internet shopping and salty foods.) There seem to be a lot of resources for what happens after someone you love dies, but not much on what happens before that. I know things will be worse once she passes, but things are very weird now, and I'm not sure how best to cope.
You might find some of the answers to my recent question useful.
Mercredi's advice in that thread to just take it day by day was very helpful for me. Once I stopped looking forward and worrying about the future, it became easier to cope.
My thoughts are with you. I'm so sorry you and your mum have to deal with this.
posted by malibustacey9999 at 5:50 PM on August 27, 2012
Mercredi's advice in that thread to just take it day by day was very helpful for me. Once I stopped looking forward and worrying about the future, it became easier to cope.
My thoughts are with you. I'm so sorry you and your mum have to deal with this.
posted by malibustacey9999 at 5:50 PM on August 27, 2012
I'm sorry for your loss. One resource you might want to lean on besides your friends and colleagues and family is the staff of the hospice provider. Hospice has traditionally embraced care for the entire family and good providers will have some kind of counselor and/or social worker who can help talk you through these things or suggest resources. A lending library with some books on loss and grief is not uncommon either. Best wishes to you and your family.
posted by zachlipton at 5:54 PM on August 27, 2012 [3 favorites]
posted by zachlipton at 5:54 PM on August 27, 2012 [3 favorites]
I'm sorry. I sat deathwatch for a few weeks on my father, who was mostly unconscious while he was dying. I sat by his bedside and did a couple big jigsaw puzzles - took just enough of my brain to pass the time without actually being anything I cared about abandoning partway through. Reading: I was not ready to try to process anything, but I bet the hospice people have really good recommendations. (We had less than a day in hospice. It was a tremendous relief to be there, finally, after the noise and intrusion of the hospital, and I don't think it's a coincidence that he let go within a few hours of his arrival.)
posted by gingerest at 6:00 PM on August 27, 2012
posted by gingerest at 6:00 PM on August 27, 2012
I'm so sorry. My Mom died at 56. I was 35, with 2 kids under 10, a newly absent husband, and a new business. (She lived a 4 hour flight away.) There was so much going on in my life at the time I couldn't think in terms of strategy, I was just trying to keep my head above water, so I don't know how much help my experience might be. Since then, though, I've been a hospice volunteer for years and I can tell you that waiting for someone to die is like nothing else on this earth, and no one does it easily.
This is what happened to me: my mother slipped into a coma, and after a couple of days it was clear she wasn't going to wake up. My Dad called and said I should plan to come out for the funeral, and I agreed. As I was driving home later that day, I had to pull to the side of the road, because I felt so strongly that my mother had something to tell me. It wasn't a voice, or anything, but it was so clear (whether I created it or not doesn't matter). She told me to pay attention to everything, because there will be a "last time" for everything I do, and mostly I won't know it. I drove home, found caretakers, and took the next flight out. I arrived at the hospital a few hours before she died, still in the coma, but I am so, so grateful I was there.
My advice to people since then is, as everyone says, take it one day at time (not much choice, really), and when you're told the end is very close -- and hospice more often than not does know -- drop everything and go to her bedside. If you're not there, it's not a tragedy, but don't be too rational about it, and don't be afraid.
One more thing: although there are lots and lots of books about losing a loved one, they don't give you a clue. Be careful and gentle with yourself for at least the first year after her death, and be prepared to miss her for the rest of your life. I know it happens, but I am sorry. It's not easy to lose your Mom.
posted by kestralwing at 6:02 PM on August 27, 2012 [9 favorites]
This is what happened to me: my mother slipped into a coma, and after a couple of days it was clear she wasn't going to wake up. My Dad called and said I should plan to come out for the funeral, and I agreed. As I was driving home later that day, I had to pull to the side of the road, because I felt so strongly that my mother had something to tell me. It wasn't a voice, or anything, but it was so clear (whether I created it or not doesn't matter). She told me to pay attention to everything, because there will be a "last time" for everything I do, and mostly I won't know it. I drove home, found caretakers, and took the next flight out. I arrived at the hospital a few hours before she died, still in the coma, but I am so, so grateful I was there.
My advice to people since then is, as everyone says, take it one day at time (not much choice, really), and when you're told the end is very close -- and hospice more often than not does know -- drop everything and go to her bedside. If you're not there, it's not a tragedy, but don't be too rational about it, and don't be afraid.
One more thing: although there are lots and lots of books about losing a loved one, they don't give you a clue. Be careful and gentle with yourself for at least the first year after her death, and be prepared to miss her for the rest of your life. I know it happens, but I am sorry. It's not easy to lose your Mom.
posted by kestralwing at 6:02 PM on August 27, 2012 [9 favorites]
Ugh. I know how terrible this is. I moved into my parents' home from out of state (with my wife, no less) when I was 27 as my mom was dying from pancreatic cancer. I spent what time with my mom as I could, while continuing to work. But with the all the other people around, it wasn't like I was on 24/7 duty or anything. I coped by distracting myself with videogames. My brother (who didn't live with my parents at the time) once chastised me for this, but it wasn't like he was there all the time and he couldn't know what it was like. I figure you do what you can to spend time with your loved one, and you do whatever you need to keep your equilibrium as much as possible. We went for walks, but it felt weird to be out of the house when I wasn't at work. When the end came, we had a few hours warning, which was enough for all of us who weren't there to get there. I was glad to have that time with my mom, but I didn't begrudge the time (any of us) spent elsewhere. We all do what we can in times like that, and if you think you're doing all that you can, you probably are.
posted by mollweide at 6:09 PM on August 27, 2012
posted by mollweide at 6:09 PM on August 27, 2012
I am so sorry. Seconding the suggestion of asking the hospice staff for pointers to resources. That's one of the reasons they're there, to support the family as well as the person with a terminal diagnosis.
If you ever need to vent or want an encouraging word from a stranger, I'm as close as your MeMail.
posted by Sidhedevil at 6:48 PM on August 27, 2012
If you ever need to vent or want an encouraging word from a stranger, I'm as close as your MeMail.
posted by Sidhedevil at 6:48 PM on August 27, 2012
I'm so sorry you're going through this..
My mother passed away nearly a year ago from metastasized cancer. She was 60, I was 35. We had a lot of time after her cancer had returned after several years of remission, but had no idea how much time was left in the end. The time between when she entered the hospital and when she passed was less than a week. Mercifully short for her, but like anyone, I wish I'd had more time to say the things left unsaid.
My advice? Take the time to tell her how much you love her, how she was a great parent, and how you wouldn't change anything. My mom knew all that, but I still wish I'd spoken the words. I miss her everyday.
Their's weirdness in the waiting, but it's also a very fleeting opportunity to let her know how much you value her. Spend as much time as you can.
posted by marmIrite? at 7:01 PM on August 27, 2012 [2 favorites]
My mother passed away nearly a year ago from metastasized cancer. She was 60, I was 35. We had a lot of time after her cancer had returned after several years of remission, but had no idea how much time was left in the end. The time between when she entered the hospital and when she passed was less than a week. Mercifully short for her, but like anyone, I wish I'd had more time to say the things left unsaid.
My advice? Take the time to tell her how much you love her, how she was a great parent, and how you wouldn't change anything. My mom knew all that, but I still wish I'd spoken the words. I miss her everyday.
Their's weirdness in the waiting, but it's also a very fleeting opportunity to let her know how much you value her. Spend as much time as you can.
posted by marmIrite? at 7:01 PM on August 27, 2012 [2 favorites]
I love this website! My mom died when I was 39 with three young children to take care of in another town. I went over ever weekend to the hospital--as she kept getting almost better to go home, then would get worse--for two months. As people have said, nothing, NOTHING can prepare you. Just realize that everything you feel is perfect for you, expect to be loopy for a long time, and spend as much time with her as you can, even if it's just to rub her feet or hands or pat her hair. Those little things will mean so much, the dying crave physical comfort. Know that her pain will soon stop, and she will have a new tomorrow. God bless you and your family.
posted by msleann at 7:20 PM on August 27, 2012 [2 favorites]
posted by msleann at 7:20 PM on August 27, 2012 [2 favorites]
I don't have any advice but wanted to say I'm sorry you are going through this. I wish you strength and peace during this time.
posted by dawkins_7 at 7:26 PM on August 27, 2012
posted by dawkins_7 at 7:26 PM on August 27, 2012
I'm sorry that you are going through this. My dad was in declining health for a few years, but the last week of his life was like standing on train tracks, seeing the train and having to wait until it hit me. You know what is coming and cannot change the course. I sat and talked to him when he was fading in and out. The last day of his life, I sat and wrote descriptive words about him and his life on paper, I taped them all over his room, there was more than 100 sheets hanging up. It was cathartic to write, think and remember. The nursing home staff and my family were moved to read the words as they visited my dads room. I think, if you can, give your mom permission to die, its terrifying, but can be important. Dad also wanted to dictate a letter to a few close friends and family, you might see if your mom wants to do something like that. I also asked dad if he wanted to be alone or with someone when he died. I asked him to squeeze my hand if he wanted company, he gently and repeatedly squeezed. Give yourself time to accept what's happening and there's no timeline. You're in my thoughts.
posted by jennstra at 7:28 PM on August 27, 2012 [5 favorites]
posted by jennstra at 7:28 PM on August 27, 2012 [5 favorites]
Best answer: I'm 38 too. My father died two months ago after a sudden illness, he was in a coma for a week before he died. Ditto that nothing prepares you for this. My dad was not at all cognizant of our presence which was tough. I spent a lot of time just talking to him about...everything. I live out of state, so we used to call 1-2 times a week and he would always go through his normal routine about asking about how my car was running, how work was, did I go to church that week, the weather, did I talk to my brother, etc. so I talked about that. He was always a good listener so I just went on and on for hours. I told him all the things I ever wanted to say.
I also spend a lot of that time in physical contact with him - holding his hand, putting my head on his arm, etc. I wanted to feel him as much as possible, and I wanted him to know I was there. I also did things like play his favorite music.
My biggest piece of advice to you is to mourn however you see fit. Feel what you feel and don't let anyone tell you how to grieve the loss of your father. There is no right way, your relationship was special so honor him however you please. This sh-t sucks, no getting around it. Talking about him helps a lot but I also find that sometimes a good cry helps too.
Lastly, take care of yourself.
You have my deepest sympathies.
posted by SoulOnIce at 7:36 PM on August 27, 2012 [3 favorites]
I also spend a lot of that time in physical contact with him - holding his hand, putting my head on his arm, etc. I wanted to feel him as much as possible, and I wanted him to know I was there. I also did things like play his favorite music.
My biggest piece of advice to you is to mourn however you see fit. Feel what you feel and don't let anyone tell you how to grieve the loss of your father. There is no right way, your relationship was special so honor him however you please. This sh-t sucks, no getting around it. Talking about him helps a lot but I also find that sometimes a good cry helps too.
Lastly, take care of yourself.
You have my deepest sympathies.
posted by SoulOnIce at 7:36 PM on August 27, 2012 [3 favorites]
I was 39 when I lost my father, four and a half years ago. Like your mother, he had a diagnosis of metastasizing cancer that suddenly took a turn for the worse. (Pneumonia, the "old man's friend," helped.)
What I most regret was that my dad couldn't talk for the last year of his life (oral cancer), so there were lots of things I wanted to know about his childhood, his parents--in short, his past--that I couldn't ask.
If your mom is lucid and feels like talking about the past, you might ask her what she wants you/your generation/future generations to know about her--funny stories from her childhood, stories about your grandparents that she wouldn't have dared tell before her mortal illness, etc. Maybe she doesn't have any, but if she does, it can be a subject for your phone conversations that helps you and her think of her as she was, not as she is, and helps her think about what she most values about her time on earth.
You might even think about recording those calls.
posted by brianogilvie at 7:50 PM on August 27, 2012 [2 favorites]
What I most regret was that my dad couldn't talk for the last year of his life (oral cancer), so there were lots of things I wanted to know about his childhood, his parents--in short, his past--that I couldn't ask.
If your mom is lucid and feels like talking about the past, you might ask her what she wants you/your generation/future generations to know about her--funny stories from her childhood, stories about your grandparents that she wouldn't have dared tell before her mortal illness, etc. Maybe she doesn't have any, but if she does, it can be a subject for your phone conversations that helps you and her think of her as she was, not as she is, and helps her think about what she most values about her time on earth.
You might even think about recording those calls.
posted by brianogilvie at 7:50 PM on August 27, 2012 [2 favorites]
Best answer: "I was glad to have that time with my mom, but I didn't begrudge the time (any of us) spent elsewhere. We all do what we can in times like that, and if you think you're doing all that you can, you probably are."
This. My dad passed away 3 years ago this week. He had cancer for a number of years, and experienced a fairly slow decline. Then all of a sudden, without warning, we were in the end stages.
There's no right way or wrong way to deal with this. While I don't doubt that those advocating spending as much time as possible with your mom needed to do that, that doesn't mean that this is what you need. Personally, I spent what time I could with my dad, but I needed to not be in his hospital room for 10 hours a day (or more) for the last 2 weeks of his life. We took turns visiting with him, and somehow, we got through it, just as you will.
Deal with time in the way that you need to and take the time to mourn in the way that you need to mourn, but don't let anyone make you feel like you're doing it 'wrong'.
posted by scrute at 8:24 PM on August 27, 2012 [1 favorite]
This. My dad passed away 3 years ago this week. He had cancer for a number of years, and experienced a fairly slow decline. Then all of a sudden, without warning, we were in the end stages.
There's no right way or wrong way to deal with this. While I don't doubt that those advocating spending as much time as possible with your mom needed to do that, that doesn't mean that this is what you need. Personally, I spent what time I could with my dad, but I needed to not be in his hospital room for 10 hours a day (or more) for the last 2 weeks of his life. We took turns visiting with him, and somehow, we got through it, just as you will.
Deal with time in the way that you need to and take the time to mourn in the way that you need to mourn, but don't let anyone make you feel like you're doing it 'wrong'.
posted by scrute at 8:24 PM on August 27, 2012 [1 favorite]
I asked something similar a couple years ago; it may be of some help.
Just reading the support from the AskMe people was a big help to me.
posted by deborah at 9:01 PM on August 27, 2012
Just reading the support from the AskMe people was a big help to me.
posted by deborah at 9:01 PM on August 27, 2012
Best answer: I'm so sorry. This happened to me, almost twenty years ago. My dad had cancer for just under a year and then was given three months to live. It was odd how we had that timeline, because I believe he lived exactly three more months, to the day. When we got the news, he was still conscious and able to talk - the cancer hadn't spread as far as it would. He could still talk, but none of us really knew what to say.
As for the last couple weeks when we knew the end was near, we mostly just spent a lot of time at the hospital next to him. There was a chair that folded out and my mom and sister and I made sure that one of us was always with him. We just held his hand and tried to talk to him.
It was also the first time all (6) of his siblings had been together since my dad and mom's wedding, so there was some catching up amongst them, but I didn't really pay attention.
Second to my dad dying, the most upsetting thing to me was the way his brothers and sisters reacted. My family is generally pretty irreverent and prone to joking around but I wasn't ready for this at all. I remember in the hour or so between when he passed away and when the coroner showed up (not to derail, but that part is really really hard), his siblings were sitting in a room next door, cracking jokes and laughing uproariously. I went over, glared at them, and slammed the door.
The third thing was that the hospital put a red blanket, folded, at the foot of his bed. I didn't know what that was for until I asked. That may not happen to you, but just be aware that the hospital staff has been through this many times before and their efficiency and stoic attitudes may be a little unsettling.
So, on the one hand, you can lean on family, but at the same time you can't predict anything they'll do or say. It's an incredibly isolating experience, everyone involved is dealing with their grief in their own way (one of my uncles told me to give my dad a kiss - that was extremely unpleasant), and it's something you really have to face alone, even if you're surround by friends and family.
I made sure that I took a separate car to the hospital in that last week. I needed to drive around aimlessly and visit Pier 1 looking for the right decorative box in which to store his ashes. I needed to come back to my mom's house after she and my sister were asleep.
Please, let yourself have beer and salty snacks for a period of time if you need to. This isn't the time to deny yourself any pleasure you can muster.
posted by bendy at 10:14 PM on August 27, 2012 [1 favorite]
As for the last couple weeks when we knew the end was near, we mostly just spent a lot of time at the hospital next to him. There was a chair that folded out and my mom and sister and I made sure that one of us was always with him. We just held his hand and tried to talk to him.
It was also the first time all (6) of his siblings had been together since my dad and mom's wedding, so there was some catching up amongst them, but I didn't really pay attention.
Second to my dad dying, the most upsetting thing to me was the way his brothers and sisters reacted. My family is generally pretty irreverent and prone to joking around but I wasn't ready for this at all. I remember in the hour or so between when he passed away and when the coroner showed up (not to derail, but that part is really really hard), his siblings were sitting in a room next door, cracking jokes and laughing uproariously. I went over, glared at them, and slammed the door.
The third thing was that the hospital put a red blanket, folded, at the foot of his bed. I didn't know what that was for until I asked. That may not happen to you, but just be aware that the hospital staff has been through this many times before and their efficiency and stoic attitudes may be a little unsettling.
So, on the one hand, you can lean on family, but at the same time you can't predict anything they'll do or say. It's an incredibly isolating experience, everyone involved is dealing with their grief in their own way (one of my uncles told me to give my dad a kiss - that was extremely unpleasant), and it's something you really have to face alone, even if you're surround by friends and family.
I made sure that I took a separate car to the hospital in that last week. I needed to drive around aimlessly and visit Pier 1 looking for the right decorative box in which to store his ashes. I needed to come back to my mom's house after she and my sister were asleep.
Please, let yourself have beer and salty snacks for a period of time if you need to. This isn't the time to deny yourself any pleasure you can muster.
posted by bendy at 10:14 PM on August 27, 2012 [1 favorite]
My dad died from colon cancer at 47. It was agonizing to experience the process before he died. Without knowing anything about your spiritual perspective, my main advice is to let your self feel whatever it will feel. Don't try to evaluate or fix things at this time. Take deep breaths... moment to moment. In your weaker moments, don't be afraid to ask for help. In your stronger moments, facilitate your Mom's needs.
posted by surfgator at 10:16 PM on August 27, 2012
posted by surfgator at 10:16 PM on August 27, 2012
One other thing - in the last month or so before my dad died he couldn't speak. We wished that we had found some other way to communicate with him. In retrospect even a board with pictures and words that he could point at would've been great. But if there's anything you need to do to facilitate communicating with your mom, do not hesitate.
posted by bendy at 10:25 PM on August 27, 2012
posted by bendy at 10:25 PM on August 27, 2012
I'm sorry. If she's still aware of her surroundings, maybe you can call her to talk about a couple of your fondest memories of times you've shared with her. You can name a couple of the books she read to you that you're going to read to your own children, remind her of how much you love the [fill in the blank] that she made/gave to you, tell her you can still remember her singing with you on car rides or teaching you to [*], etc. Anything she did out of love or helping you to grow up will be good, and my understanding is that hearing is the last sense to go. It might help both of you to tell her that although you know she's dying, those memories will always be with you and they're special to you.
For just trying to get through the next few days, try to make the environment around you as calming or stimulating as you need it to be, in terms of the senses. Put on quiet or upbeat music, or blast the music if that's what it takes to deal with your emotions. Keep healthy snacks around to nibble on in case you're not very hungry, find some mindless tasks that don't require concentration and will let your thoughts drift to your mother, but will still allow you be doing something instead of just waiting - sort photos on your computer or in your boxes, go to the zoo or for a bike ride, or wash and wax your vehicle. I'll be thinking of you and your mom.
posted by stxnpx at 10:45 PM on August 27, 2012 [1 favorite]
For just trying to get through the next few days, try to make the environment around you as calming or stimulating as you need it to be, in terms of the senses. Put on quiet or upbeat music, or blast the music if that's what it takes to deal with your emotions. Keep healthy snacks around to nibble on in case you're not very hungry, find some mindless tasks that don't require concentration and will let your thoughts drift to your mother, but will still allow you be doing something instead of just waiting - sort photos on your computer or in your boxes, go to the zoo or for a bike ride, or wash and wax your vehicle. I'll be thinking of you and your mom.
posted by stxnpx at 10:45 PM on August 27, 2012 [1 favorite]
First, I am so sorry for what you are going through. I know that it hurts. A lot. My mother was 62 when she died of cervical cancer and lymphoma. I was 29.
I guess I was lucky in some ways because I was a nurse. I quit my job and left mt BF in SF for 2 and a half months and went back to the Midwest to take care of her. That was what was right for me, but I don't judge others by it.
I was with her basically 24 hours a day. She went into a semicomatose state soon after I got there, but I still spent a lot of time talking to her,touchiing her hands and combing her hair. She was on hospice care also, at home, so her pain was controlled.
I wasn't prepared for my large family of siblings to play out some of their jealousies and insecurities with me and each other, but I learned to let it go-everyone grieves in their own way.
I read out loud to her-books that both she and I liked, and I found comfort in poetry. There is a book called "When Bad Things Happen to Good Peope which I have felt comforting during several hard times in life.
It may seem morbid, but if you are going to be with her in end stage, you might want to research the physical signs of death. It is good to be prepared. I hope this helps you. I will keep you and your mom in my heart.
posted by Isadorady at 1:16 AM on August 28, 2012 [1 favorite]
I guess I was lucky in some ways because I was a nurse. I quit my job and left mt BF in SF for 2 and a half months and went back to the Midwest to take care of her. That was what was right for me, but I don't judge others by it.
I was with her basically 24 hours a day. She went into a semicomatose state soon after I got there, but I still spent a lot of time talking to her,touchiing her hands and combing her hair. She was on hospice care also, at home, so her pain was controlled.
I wasn't prepared for my large family of siblings to play out some of their jealousies and insecurities with me and each other, but I learned to let it go-everyone grieves in their own way.
I read out loud to her-books that both she and I liked, and I found comfort in poetry. There is a book called "When Bad Things Happen to Good Peope which I have felt comforting during several hard times in life.
It may seem morbid, but if you are going to be with her in end stage, you might want to research the physical signs of death. It is good to be prepared. I hope this helps you. I will keep you and your mom in my heart.
posted by Isadorady at 1:16 AM on August 28, 2012 [1 favorite]
My mum died under fairly similar circumstances, at about the same age. She had chosen to die at home, and the whole family was there. To be honest, I didn't find anything to be particularly helpful during that last week or so before she died. I found it to be the worst part of the whole affair. To the extent that anything helped alleviate the constant feeling of dread and despair that seemed to be creeping over the whole family...
Spending time with my 18-month old son was really nice, and helped to remind me that not everything in life is miserable. Reading gave me an escape. Fantasy novels were especially good in that respect: I think I read the first three books of A Song of Ice and Fire in a week. Sunshine was also a big thing. We didn't get much sun because it was late winter, but when it did come out the simple joy of feeling warmth on my skin was priceless. Alcohol didn't help much, with one exception: a glass of wine before going to bed helped me sleep. I didn't get to do it much because I was on call most nights to help mum, but when I could it was nice to get a whole night's sleep.
Apart from that, I guess anything you can do to look after your health seems sensible. When my mum died a big theme that seemed to run through everyone's experiences was that it was physically demanding. Most of us came down with illnesses. We seemed more prone to injuring ourselves. It's really easy to neglect yourself in this situation.
(Also, on preview: seconding Isadorady's suggestion that if you're going to be there you should be prepared for the physical signs of death. That was something that the nurses really stressed with us and it was a godsend. Not surprisingly, death turned out to be very different to the way it's portrayed on TV, and we would have panicked had we been unprepared)
posted by mixing at 1:29 AM on August 28, 2012 [2 favorites]
Spending time with my 18-month old son was really nice, and helped to remind me that not everything in life is miserable. Reading gave me an escape. Fantasy novels were especially good in that respect: I think I read the first three books of A Song of Ice and Fire in a week. Sunshine was also a big thing. We didn't get much sun because it was late winter, but when it did come out the simple joy of feeling warmth on my skin was priceless. Alcohol didn't help much, with one exception: a glass of wine before going to bed helped me sleep. I didn't get to do it much because I was on call most nights to help mum, but when I could it was nice to get a whole night's sleep.
Apart from that, I guess anything you can do to look after your health seems sensible. When my mum died a big theme that seemed to run through everyone's experiences was that it was physically demanding. Most of us came down with illnesses. We seemed more prone to injuring ourselves. It's really easy to neglect yourself in this situation.
(Also, on preview: seconding Isadorady's suggestion that if you're going to be there you should be prepared for the physical signs of death. That was something that the nurses really stressed with us and it was a godsend. Not surprisingly, death turned out to be very different to the way it's portrayed on TV, and we would have panicked had we been unprepared)
posted by mixing at 1:29 AM on August 28, 2012 [2 favorites]
My wife passed away last year in a similar situation, after she stopped treatment. One of the things that helped both me and her was to have a formal moment to say goodbye before death was imminent, as we went for a meal with the entire family in celebration of her life. Afterwards she could withdraw gratefully and wait for things to end while it gave us closure without having the anxiety of waiting for the actual, physical end.
Of course that didn't mean the wait for that happen wasn't still awful, there's nothing much really that can be done about it, but it gave the comfort of knowning that everything was done.
Apart from that, refuge in work and dumb entertainment worked for me to not think so much about it during the day; it's just at night, when you're lying in bed waiting that nobody can help you with.
My best wishes for you and your mother, may her death be as painless as possible.
posted by MartinWisse at 3:33 AM on August 28, 2012
Of course that didn't mean the wait for that happen wasn't still awful, there's nothing much really that can be done about it, but it gave the comfort of knowning that everything was done.
Apart from that, refuge in work and dumb entertainment worked for me to not think so much about it during the day; it's just at night, when you're lying in bed waiting that nobody can help you with.
My best wishes for you and your mother, may her death be as painless as possible.
posted by MartinWisse at 3:33 AM on August 28, 2012
My mother passed away at home at the age of 52 after a two-year-long battle with lung cancer. I was 27 at the time and an only child.
I'm 32 now, and still not a day goes by that I don't think about her.
She was being actively treated up until about 1 week before she died. The doctor informed us that she had about a week left to live, and he was pretty spot on. She chose to die at home.
She was constantly surrounded by her brothers and sisters, and lots of old friends took the opportunity to come by to say goodbye one last time. So, the house was a bit of a whirlwind of people coming and going, which both added to the stress and also helped distract from the "terrible wait."
We had the opportunity to talk and discuss troublesome moments from our past, which was helpful. We also reminisced about good things too. Old family trips to Disney World, bringing home our family's first computer, little league blunders, etc.
My mother dealt with a lot of pain, discomfort, depression and anxiety for the final two years of her life. What was most surprising to me about the whole situation was the unexpected feeling of relief once she actually passed on. Realizing and knowing that the last two years of all-consuming "mom-has-cancer" feeling was finally over for our family, and that she was no longer suffering.
In closing, I suppose I don't have any specific advice for this very odd "waiting" period. Hopefully, it affords you the opportunity to have some closure with your mother, and maybe reconnect with some of your relatives, who you'll be seeing a lot of. One last thing that helped me was actually realizing that everyone's mother dies, and that as humans, we all go through this. You're not alone.
posted by teriyaki_tornado at 6:29 AM on August 28, 2012
I'm 32 now, and still not a day goes by that I don't think about her.
She was being actively treated up until about 1 week before she died. The doctor informed us that she had about a week left to live, and he was pretty spot on. She chose to die at home.
She was constantly surrounded by her brothers and sisters, and lots of old friends took the opportunity to come by to say goodbye one last time. So, the house was a bit of a whirlwind of people coming and going, which both added to the stress and also helped distract from the "terrible wait."
We had the opportunity to talk and discuss troublesome moments from our past, which was helpful. We also reminisced about good things too. Old family trips to Disney World, bringing home our family's first computer, little league blunders, etc.
My mother dealt with a lot of pain, discomfort, depression and anxiety for the final two years of her life. What was most surprising to me about the whole situation was the unexpected feeling of relief once she actually passed on. Realizing and knowing that the last two years of all-consuming "mom-has-cancer" feeling was finally over for our family, and that she was no longer suffering.
In closing, I suppose I don't have any specific advice for this very odd "waiting" period. Hopefully, it affords you the opportunity to have some closure with your mother, and maybe reconnect with some of your relatives, who you'll be seeing a lot of. One last thing that helped me was actually realizing that everyone's mother dies, and that as humans, we all go through this. You're not alone.
posted by teriyaki_tornado at 6:29 AM on August 28, 2012
Best answer: I've been there. I was 27, my mom was 60.
I balanced caregiving with getting absorbed at work for a few months, but at the very end (the last week or so) I stopped working and spent as much time as possible with her. A lot of this was just sitting next to her bed, reading and maybe holding her hand. I think my presence helped her, even in her unconsciousness, and I know being there helped me. I took breaks as needed - I made sure to walk the loop around the neighborhood (which was where I had grown up) at least once a day; until the very end I went home to sleep at night. That was weird because every morning I checked my phone to see if my dad had called to tell me she'd died in the night.
Do you have a partner or close friends or people who have asked what they can do to help? Let them help. Tell them what you need. My partner spent a lot of nights just sitting with me and letting me say over and over how much this sucked.
I, too, stopped drinking for those last couple of weeks, feeling I was too sad for drinking to be a good idea. I did embrace some of my other comforting habits, though - I remember I was feeling bad about buying a fancy latte every morning, like, "Oh, it's expensive and the caffeine is bad for me," and later my therapist was like, "Oh my god, drinking a latte made your day better and helped you get out of bed in the morning? DRINK A FUCKING LATTE." So, you know, give yourself permission to do what helps you get through.
Two different friends gave me copies of When Things Fall Apart, so I finally read it. You might find it really helpful if you're open to a Buddhist-y perspective. If you are Christian you're in luck because they have more concretely comforting ways of talking about death and the afterlife.
I'm sorry you're going through this. Memail me if you'd like to talk with someone who's lost a parent. I think losing your mother is really disorienting, no matter how old you are when it happens. There's something about walking through this life, motherless, that takes the foundation out from under you.
Sending peace and comfort to you and your mom.
posted by TrixieRamble at 7:50 AM on August 28, 2012
I balanced caregiving with getting absorbed at work for a few months, but at the very end (the last week or so) I stopped working and spent as much time as possible with her. A lot of this was just sitting next to her bed, reading and maybe holding her hand. I think my presence helped her, even in her unconsciousness, and I know being there helped me. I took breaks as needed - I made sure to walk the loop around the neighborhood (which was where I had grown up) at least once a day; until the very end I went home to sleep at night. That was weird because every morning I checked my phone to see if my dad had called to tell me she'd died in the night.
Do you have a partner or close friends or people who have asked what they can do to help? Let them help. Tell them what you need. My partner spent a lot of nights just sitting with me and letting me say over and over how much this sucked.
I, too, stopped drinking for those last couple of weeks, feeling I was too sad for drinking to be a good idea. I did embrace some of my other comforting habits, though - I remember I was feeling bad about buying a fancy latte every morning, like, "Oh, it's expensive and the caffeine is bad for me," and later my therapist was like, "Oh my god, drinking a latte made your day better and helped you get out of bed in the morning? DRINK A FUCKING LATTE." So, you know, give yourself permission to do what helps you get through.
Two different friends gave me copies of When Things Fall Apart, so I finally read it. You might find it really helpful if you're open to a Buddhist-y perspective. If you are Christian you're in luck because they have more concretely comforting ways of talking about death and the afterlife.
I'm sorry you're going through this. Memail me if you'd like to talk with someone who's lost a parent. I think losing your mother is really disorienting, no matter how old you are when it happens. There's something about walking through this life, motherless, that takes the foundation out from under you.
Sending peace and comfort to you and your mom.
posted by TrixieRamble at 7:50 AM on August 28, 2012
When my dad was dying I was lucky enough to be able to visit him in the hospice every day for the time he was there (about 4 weeks). I got through it by chatting to him about everyday stuff. We took his guitar along and he showed me how to play some simple bits. We listened to music together, we listened to comedy radio programs. Mostly we just chatted about nothing much. Often dad was asleep and we were chatting between ourselves, but he'd often drop in and out of the conversation. He got more and more sleepy and doped up on painkillers but he was definitely aware of us being there until about the last week. When he was sleeping all the time I stopped visiting because he didn't know I was there and I didn't want to be there.
That's what I actually did.
How I got through it emotionally was to love every second I could spend with my dad and have that balance in my head between desperately wanting him not to die and yet knowing it is a process and wanting his pain to stop. I spent a lot of time when I wasn't with him crying and mourning. It was a relief when he died. I also spent that time sorting out a lot of practical stuff. It would have felt wrong to sort his personal possessions while he was still alive, but I did a lot of neutral things around the house that needed to be done. After he died, I found that sorting and organising helped distract me a lot.
Good luck. You will get through this because everything passes and you don't have any choice but to cope. Try to enjoy and value the good bits and let the bad bits pass. You can't control what happens.
posted by kadia_a at 8:42 AM on August 28, 2012
That's what I actually did.
How I got through it emotionally was to love every second I could spend with my dad and have that balance in my head between desperately wanting him not to die and yet knowing it is a process and wanting his pain to stop. I spent a lot of time when I wasn't with him crying and mourning. It was a relief when he died. I also spent that time sorting out a lot of practical stuff. It would have felt wrong to sort his personal possessions while he was still alive, but I did a lot of neutral things around the house that needed to be done. After he died, I found that sorting and organising helped distract me a lot.
Good luck. You will get through this because everything passes and you don't have any choice but to cope. Try to enjoy and value the good bits and let the bad bits pass. You can't control what happens.
posted by kadia_a at 8:42 AM on August 28, 2012
Best answer: This is a completely seismic, geological scale shift in your life and there's not really much "dealing" with it except getting through. You're doing the most important thing you can (being/speaking with her as much as possible).
Do your best to take care of yourself (though it can be difficult try to sleep normally as much as possible, avoid excessive drinking, eat well, stay hydrated, practice relaxation or meditation if you can or think about taking it up). You can't really make it easier but you can make it harder by piling unnecessary stresses on yourself. Be kind, forgiving, understanding, compassionate, patient, tolerant with yourself. It may feel like your brain isn't working quite right for a while. It is very weird. It will stay weird for quite a while.
It gets better. You come to terms with it. But the basic situation stinks, it stinks that people go away. There's no brushing that off or explaining it away, I don't care what your beliefs are. And it's okay to be mad and sad about it. It's okay to feel however you feel moment to moment. For me I found the less pressure I put on myself to feel a particular way (even (maybe especially) "normal," however desirable that may seem) or to "arrive" at some resolution or endpoint of grief, the better. I feel sanest and most okay when I focus on taking care of myself, experiencing whatever I'm feeling and being okay with it, but also trying to hold onto and affirm the positive feelings and memories the most. It'll be a year in a few months for me and it still affects me every day, though I feel okay and function normally most of the time. I'll never stop missing my dad.
posted by nanojath at 8:52 AM on August 28, 2012 [1 favorite]
Do your best to take care of yourself (though it can be difficult try to sleep normally as much as possible, avoid excessive drinking, eat well, stay hydrated, practice relaxation or meditation if you can or think about taking it up). You can't really make it easier but you can make it harder by piling unnecessary stresses on yourself. Be kind, forgiving, understanding, compassionate, patient, tolerant with yourself. It may feel like your brain isn't working quite right for a while. It is very weird. It will stay weird for quite a while.
It gets better. You come to terms with it. But the basic situation stinks, it stinks that people go away. There's no brushing that off or explaining it away, I don't care what your beliefs are. And it's okay to be mad and sad about it. It's okay to feel however you feel moment to moment. For me I found the less pressure I put on myself to feel a particular way (even (maybe especially) "normal," however desirable that may seem) or to "arrive" at some resolution or endpoint of grief, the better. I feel sanest and most okay when I focus on taking care of myself, experiencing whatever I'm feeling and being okay with it, but also trying to hold onto and affirm the positive feelings and memories the most. It'll be a year in a few months for me and it still affects me every day, though I feel okay and function normally most of the time. I'll never stop missing my dad.
posted by nanojath at 8:52 AM on August 28, 2012 [1 favorite]
Response by poster: Thanks for the answers, everyone. It means a lot.
I talked to the hospice staff, and they were great, but their resources seem more appropriate for my in-town family, while I am 250 miles away most of the time. They also seemed more focused on what will happen to me once she goes, rather than now. But I think there's really no way to deal with the weirdness except for just letting it happen, whether it be for however many days, weeks or months it might take.
posted by heurtebise at 8:27 PM on August 28, 2012
I talked to the hospice staff, and they were great, but their resources seem more appropriate for my in-town family, while I am 250 miles away most of the time. They also seemed more focused on what will happen to me once she goes, rather than now. But I think there's really no way to deal with the weirdness except for just letting it happen, whether it be for however many days, weeks or months it might take.
posted by heurtebise at 8:27 PM on August 28, 2012
I have no clinical expertise whatsoever on the matter, but I have experienced what you're going through, in a way. My dad died suddenly when I was 12, my aunt (his sister, who had been ill with a brain tumor for years) less than three weeks after him, and my grandfather (who had also been ill for some time) died about two years ago now. My grandma is 96 and still healthy (knock on wood, everyone who reads this) but is also preparing for her own death. I am 22. Like you, I know no one who has lost a close relative.
In my experience, the only thing to do is to coast through the weirdness. I can't tell you exactly how I dealt with the weirdness. Sometimes I would forget entirely that anything was wrong, while other times I would need to go on long walks alone, or get absorbed in a book. If you need distraction, seek distraction. If you need seclusion, seek seclusion. The same goes for deep thought about the situation and social interaction. Do what you need to do. Stay active. I found that creating a gym routine really helped me - the endorphins helped, no doubt, but I think part of it was that it was reaffirming to know that I could start a new routine despite what was going on - that I can wait, but waiting for this isn't like being in a waiting room, where you can't really do anything else until the waiting is over. Life goes on while you wait.
Try taking up a focus-intensive hobby, like knitting or cooking (or whatever you find you need to focus on; I can't daydream when I'm busy cooking or I forget what I'm doing, but some people are completely the opposite).
Also, finding some people to hang out with who don't know what's going on might help you, especially if you have times when you don't want to think about it at all. Try going to a meetup group once or twice just to spend some time being social without the pressure of trying not to remind your friends that you're in this weird almost-grief stage.
A little disjointed there, but I hope that helped a little.
posted by Urban Winter at 10:40 AM on August 29, 2012 [1 favorite]
In my experience, the only thing to do is to coast through the weirdness. I can't tell you exactly how I dealt with the weirdness. Sometimes I would forget entirely that anything was wrong, while other times I would need to go on long walks alone, or get absorbed in a book. If you need distraction, seek distraction. If you need seclusion, seek seclusion. The same goes for deep thought about the situation and social interaction. Do what you need to do. Stay active. I found that creating a gym routine really helped me - the endorphins helped, no doubt, but I think part of it was that it was reaffirming to know that I could start a new routine despite what was going on - that I can wait, but waiting for this isn't like being in a waiting room, where you can't really do anything else until the waiting is over. Life goes on while you wait.
Try taking up a focus-intensive hobby, like knitting or cooking (or whatever you find you need to focus on; I can't daydream when I'm busy cooking or I forget what I'm doing, but some people are completely the opposite).
Also, finding some people to hang out with who don't know what's going on might help you, especially if you have times when you don't want to think about it at all. Try going to a meetup group once or twice just to spend some time being social without the pressure of trying not to remind your friends that you're in this weird almost-grief stage.
A little disjointed there, but I hope that helped a little.
posted by Urban Winter at 10:40 AM on August 29, 2012 [1 favorite]
This thread is closed to new comments.
I'm so sorry you're going though this.
posted by mercredi at 5:47 PM on August 27, 2012 [4 favorites]