mother has cancer and I have so many questions
June 28, 2014 1:10 PM
My Mother is likely going to receive a Metastatic Lung Cancer diagnosis on Monday. Due to her health, she probably won't be able to receive treatment. Questions about seeing an oncologist, palliative care, hospice, and my options.
I'm sorry, this is long. I'm trying to include as many details as possible.
My Mother went to the hospital on Tuesday with what she thought was constipation or bowel obstruction. The ER discovered that the cause of her pain and discomfort is from pancreatitis. They admitted her to the hospital. An ultrasound of her pancreas showed an abnormality with her liver. A CT scan of her chest and abdomen revealed a mass in her lungs and enlarged lymph nodes all over her abdomen. Some of those lymph nodes are pressing against her pancreas, causing the pancreatitis. They took biopsies on Thursday. The doctor tells me that he doesn't expect results until Monday. He also told me that from his experience, this is presenting like text book lung cancer. The only question is what type.
My mother's health hasn't been great for the majority of my life. She suffers from a number of ailments, but the big two are diminished kidney function and diabetes. Prior to the hospitalization, she had a surgery planned for this Friday to put in a vascular access in her arm for dialysis in the future. She is also moderately disabled, unable to walk or stand for longer then a minute or two at a time. I have lived with her for years as her caretaker, cleaning and providing meals and driving her to doctors appointments.
My sister and the doctors seem to be working under the assumption that if this is cancer, it is probably too far advanced and her health in too poor a state to treat. That treatment might make her feel worse and make the end of her life miserable.
I have a lot of questions. The doctor told me that to even find out if fighting the cancer is possible that she will have to be able to leave the hospital and walk into a cancer clinic and see an oncologist. Does this seem normal? She's at the biggest university hospital in my state. They have a huge cancer center. Are they not able to have an oncologist come see her?
That's if she can even leave the hospital. She is in moderate to severe pain unless she's given strong pain killers. She complains of being very weak and needs a nurse to help her to and from the toilet. She's barely eating anything. Right now the doctors are just providing palliative care for the pain from the pancreatitis. When I asked the doctor what needs to happen for her to be able to go home, he seemed a little flustered.. like there isn't a clear point for that right now. So if the hospital oncologists can't or won't see her, and she can't leave the hospital to go see one, does that mean we're just throwing up our hands and ignoring even getting an oncologist's opinion?
The doctor told me that medicare will cover all costs of hospice care except room and board. Doing research on the internet suggests that a family member who lives at home would be the primary care giver for at home hospice. I.. I don't know if I can do that. My job is part time, I have no leave or vacation time I can use to take care of her. I am sure I could apply for FMLA, but the problem is that I have substantial debt, both student loans and credit card debt. My Mother and I live a very codependent relationship. Our combined income allows us to pay all of our bills, but we need both of our incomes in order to do it. I can't afford to take unpaid FMLA leave. I can't be at home all the time to take care of her, I have to work. What are our options? I tried to google what options a person has if they don't have a family member who can care for them. Unfortunately a lot of the results on the web about hospice care is the same regurgitated information. Who do I talk to about all this? Is there a person at the hospital who can help me navigate this or who I can direct questions to? Would this be her hospital social worker?
My sister is already full time caregiver of her spouse, and won't be able to care for our mother. I feel very lost. Despite the tone of this post, I am having a very difficult time dealing with this. I have been attached to my mother's hip my entire life. Going to visit her in the hospital is rough. She seems under the assumption that I will be able to take care of her. I feel horrible and selfish that while I do want to care for her.. that I don't want the responsibility of wiping her butt after she goes to the bathroom. I feel bad that I have to focus on my future and my financial stability instead of caring for her. I feel like a horrible daughter. I feel like I can't be the daughter she deserves. Prior to this, I was already heading down a dark path toward reoccurrence of depression. I should probably talk to someone, but I don't know if I have the energy to take care of myself while all my thoughts circle trying to worry about caring for her. Who can I talk to who can help me?
I'm sorry, this is long. I'm trying to include as many details as possible.
My Mother went to the hospital on Tuesday with what she thought was constipation or bowel obstruction. The ER discovered that the cause of her pain and discomfort is from pancreatitis. They admitted her to the hospital. An ultrasound of her pancreas showed an abnormality with her liver. A CT scan of her chest and abdomen revealed a mass in her lungs and enlarged lymph nodes all over her abdomen. Some of those lymph nodes are pressing against her pancreas, causing the pancreatitis. They took biopsies on Thursday. The doctor tells me that he doesn't expect results until Monday. He also told me that from his experience, this is presenting like text book lung cancer. The only question is what type.
My mother's health hasn't been great for the majority of my life. She suffers from a number of ailments, but the big two are diminished kidney function and diabetes. Prior to the hospitalization, she had a surgery planned for this Friday to put in a vascular access in her arm for dialysis in the future. She is also moderately disabled, unable to walk or stand for longer then a minute or two at a time. I have lived with her for years as her caretaker, cleaning and providing meals and driving her to doctors appointments.
My sister and the doctors seem to be working under the assumption that if this is cancer, it is probably too far advanced and her health in too poor a state to treat. That treatment might make her feel worse and make the end of her life miserable.
I have a lot of questions. The doctor told me that to even find out if fighting the cancer is possible that she will have to be able to leave the hospital and walk into a cancer clinic and see an oncologist. Does this seem normal? She's at the biggest university hospital in my state. They have a huge cancer center. Are they not able to have an oncologist come see her?
That's if she can even leave the hospital. She is in moderate to severe pain unless she's given strong pain killers. She complains of being very weak and needs a nurse to help her to and from the toilet. She's barely eating anything. Right now the doctors are just providing palliative care for the pain from the pancreatitis. When I asked the doctor what needs to happen for her to be able to go home, he seemed a little flustered.. like there isn't a clear point for that right now. So if the hospital oncologists can't or won't see her, and she can't leave the hospital to go see one, does that mean we're just throwing up our hands and ignoring even getting an oncologist's opinion?
The doctor told me that medicare will cover all costs of hospice care except room and board. Doing research on the internet suggests that a family member who lives at home would be the primary care giver for at home hospice. I.. I don't know if I can do that. My job is part time, I have no leave or vacation time I can use to take care of her. I am sure I could apply for FMLA, but the problem is that I have substantial debt, both student loans and credit card debt. My Mother and I live a very codependent relationship. Our combined income allows us to pay all of our bills, but we need both of our incomes in order to do it. I can't afford to take unpaid FMLA leave. I can't be at home all the time to take care of her, I have to work. What are our options? I tried to google what options a person has if they don't have a family member who can care for them. Unfortunately a lot of the results on the web about hospice care is the same regurgitated information. Who do I talk to about all this? Is there a person at the hospital who can help me navigate this or who I can direct questions to? Would this be her hospital social worker?
My sister is already full time caregiver of her spouse, and won't be able to care for our mother. I feel very lost. Despite the tone of this post, I am having a very difficult time dealing with this. I have been attached to my mother's hip my entire life. Going to visit her in the hospital is rough. She seems under the assumption that I will be able to take care of her. I feel horrible and selfish that while I do want to care for her.. that I don't want the responsibility of wiping her butt after she goes to the bathroom. I feel bad that I have to focus on my future and my financial stability instead of caring for her. I feel like a horrible daughter. I feel like I can't be the daughter she deserves. Prior to this, I was already heading down a dark path toward reoccurrence of depression. I should probably talk to someone, but I don't know if I have the energy to take care of myself while all my thoughts circle trying to worry about caring for her. Who can I talk to who can help me?
And I should say: this sucks and I'm so sorry. You can do it. You are strong and brave and you can do it even though it's the scariest thing in the world. Hang in there. And get some sleep/food/etc.
posted by LobsterMitten at 1:37 PM on June 28, 2014
posted by LobsterMitten at 1:37 PM on June 28, 2014
If the process isn't going to be long, now is the time to ask extended family* for financial help. Then you take fmla and care for her as she dies. An oncologists prognosis will be useful in determining the time scale.so yes indeed push for it if it is unclear how long she has.
* this may include family that you hate or that hate you, etc - estranged family etc. The end of life can shake mercy and altruism out of many a stone.
I am so sorry for you both in this awful situation.
posted by Mistress at 2:00 PM on June 28, 2014
* this may include family that you hate or that hate you, etc - estranged family etc. The end of life can shake mercy and altruism out of many a stone.
I am so sorry for you both in this awful situation.
posted by Mistress at 2:00 PM on June 28, 2014
Oh - and starting right now - take notes. Get a composition book if you can and write down everything you're told, get the names of doctors you talk to, get the names/doses of drugs they mention, write it down. It's very easy to forget or get confused about the timeline when you've being given so much information.
posted by LobsterMitten at 2:10 PM on June 28, 2014
posted by LobsterMitten at 2:10 PM on June 28, 2014
I am so sorry. First and foremost I want to tell you that you are not a horrible daughter if you do not do home hospice. I went through this with my mom last year, and I think she had some expectation that I would be able to be her main care provider at home, but it just absolutely was not possible. It might have been possible for someone else, but I could in no way provide the level of care that she needed. The way I could be a loving daughter to her was to ensure she had good care and was comfortable - for us that meant she was in a care facility for the last few weeks. And that meant that I could be there for her with as much love and comfort as I could muster*, instead of being exhausted by physical care.
I don't know what your options will be financially. We were fortunate that my mom had a retirement fund that we could draw on to cover the room and board. Some of the other things I thought about were to pay the room and board on her credit card, or to beg or borrow from family. I think we were looking at about $7500/month not covered by Medicare. It's a lot but if the timeframe is short you at least have a sense of what you are looking at. The hospital social worker will help you figure out what options there may be.
One of the hospitals my mom was in did have a cancer center, and she did have to actually leave the unit she was in to get there for testing and treatment. But they provided a wheelchair and we just rolled over there and rolled back - see if that is an option. It sounds like your doctor wasn't real helpful, but other doctors there, or at the cancer center, may be more helpful (I found everyone at the cancer center to be extremely understanding and patient, where the hospital doctors were a little more brusque). You could try calling the cancer center and explaining the situation and seeing what they suggest.
Again, I'm so sorry. Please please care for yourself and tell your sister and other people you need help. My thoughts are with you. This is awful but you will do the best you can and you just have to know that that is good enough.
*Sometimes I didn't feel like I was mustering all that much love and comfort. I was shocked and angry and grieving. You may feel that way too. That's okay. You are BOTH going through a terrible experience; your feelings are as real and as valid as hers.
posted by tinymojo at 2:19 PM on June 28, 2014
I don't know what your options will be financially. We were fortunate that my mom had a retirement fund that we could draw on to cover the room and board. Some of the other things I thought about were to pay the room and board on her credit card, or to beg or borrow from family. I think we were looking at about $7500/month not covered by Medicare. It's a lot but if the timeframe is short you at least have a sense of what you are looking at. The hospital social worker will help you figure out what options there may be.
One of the hospitals my mom was in did have a cancer center, and she did have to actually leave the unit she was in to get there for testing and treatment. But they provided a wheelchair and we just rolled over there and rolled back - see if that is an option. It sounds like your doctor wasn't real helpful, but other doctors there, or at the cancer center, may be more helpful (I found everyone at the cancer center to be extremely understanding and patient, where the hospital doctors were a little more brusque). You could try calling the cancer center and explaining the situation and seeing what they suggest.
Again, I'm so sorry. Please please care for yourself and tell your sister and other people you need help. My thoughts are with you. This is awful but you will do the best you can and you just have to know that that is good enough.
*Sometimes I didn't feel like I was mustering all that much love and comfort. I was shocked and angry and grieving. You may feel that way too. That's okay. You are BOTH going through a terrible experience; your feelings are as real and as valid as hers.
posted by tinymojo at 2:19 PM on June 28, 2014
Something else to talk about is what a treatment plan might look like if your mom did not choose hospice care right away. My mom went from the hospital to a Skilled Nursing Facility and that was covered by medicare. I wish I could remember more details about why that was covered - her cancer was definitely terminal but I think it had to do with being able to receive occupational therapy intended to make her strong enough to return home. As long as that was the goal, medicare would cover room and board. She was able to receive palliative care service during that time. Once her care team concluded that was out of the question, we choose hospice (in that same facility) and then we had to cover it. I'm sorry to be so vague, but I wanted to mention this as something to discuss with the social worker - under what circumstances would medicare cover a SNF.
posted by tinymojo at 2:40 PM on June 28, 2014
posted by tinymojo at 2:40 PM on June 28, 2014
I know you are scared and overwhelmed. I've been there too, when my dad was suddenly diagnosed with end-stage cancer and couldn't live on his own, and my sister and I had a million questions and had no idea what to do. But: we figured it out a little at a time, day by day, and we got him what he needed.
My advice to you right now is to try to spend time with your mom just hanging out and enjoying her, and wait for a diagnosis. Once you have an official diagnosis the hospital will send all sorts of doctors and social workers and nurses in to walk you through the next steps and answer your questions.
And honestly - and I am not just saying this to make you feel better - I think you're a fantastic daughter. There are not many people in this world today who serve as live-in caretakers for their ailing parents. You have already gone above and beyond what is necessary and typical and you should feel good about that. You're a good daughter and you're going to get your mom what she needs. You just need to wait a few more days to find out for sure what's going on inside her body.
posted by something something at 2:43 PM on June 28, 2014
My advice to you right now is to try to spend time with your mom just hanging out and enjoying her, and wait for a diagnosis. Once you have an official diagnosis the hospital will send all sorts of doctors and social workers and nurses in to walk you through the next steps and answer your questions.
And honestly - and I am not just saying this to make you feel better - I think you're a fantastic daughter. There are not many people in this world today who serve as live-in caretakers for their ailing parents. You have already gone above and beyond what is necessary and typical and you should feel good about that. You're a good daughter and you're going to get your mom what she needs. You just need to wait a few more days to find out for sure what's going on inside her body.
posted by something something at 2:43 PM on June 28, 2014
This is absolutely what hospital social workers do. Please ask one of them to walk you through things as your mother's illness progresses.
posted by roomthreeseventeen at 2:44 PM on June 28, 2014
posted by roomthreeseventeen at 2:44 PM on June 28, 2014
Royalsong I am so sorry - this sounds horribly stressful and challenging. Is she at UM? They should be able to see her as an inpatient for oncology I would think. Seconding the suggestion that you talk to a social worker. To add to tinymojo's suggestion I know that at least one skilled nursing facility around here - Glacier Hills - does have inpatient hospice care available if that's what you are looking at. They have a limited number of Medicaid beds as well. Is her regular doctor in charge of her care or is it a hospitalist? A doctor who knows her and has been caring for her may be more help in sorting out the options.
Adding - take care of yourself and get some rest when you can but if you can possibly be there when the doctor rounds you have a better chance of finding out what is going on and what their thinking is as far as future care and decision making.
I think you've been a fabulous daughter taking care of your mom for so long. It's incredibly scary and overwhelming to navigate this stuff.
posted by leslies at 2:45 PM on June 28, 2014
Adding - take care of yourself and get some rest when you can but if you can possibly be there when the doctor rounds you have a better chance of finding out what is going on and what their thinking is as far as future care and decision making.
I think you've been a fabulous daughter taking care of your mom for so long. It's incredibly scary and overwhelming to navigate this stuff.
posted by leslies at 2:45 PM on June 28, 2014
As mentioned above, take extensive notes when talking with not only the doctors but also any attending nurses. Contact your local Area Agency on Aging. This group was a major help when my 84-year-old Dad was discharged after a six-week stay in the hospital after a heart attack with 15% heart function (his choices were going home or to an extended-care facility; Dad's constant lament was that all he wanted was to go home)...gave us info on who to call for low-cost push-chairs (different than very expensive traditional wheelchair; used to transport a semi-mobile person to and from, say, the bathroom or living room) and oxygen, things like that. Very supportive, very helpful.
Do NOT feel guilty or bad for not being able/willing to provide 24/7 care. There is a reason that there are professionals for that line of work. Sometimes an adult child is able to handle it, but often that is the exception, rather than the rule. You have to think creatively sometimes...as a personal anecdote, when my beloved mother-in-law was suffering from early-onset Alzheimer's Disease, I (surprising to me, since human bodily functions normally squick me out) had no problems bathing her and taking her to the toilet, etc. when my father-in-law (her sole caregiver) needed a week's break a few times per year. Yet, when my Dad needed similar personal assistance, just the thought of handling his bedside urinal grossed me out. So don't feel bad if you can't personally handle it - every situation is different.
Best of luck to you, I'm so sorry you and your family are having to go through this.
posted by Oriole Adams at 2:46 PM on June 28, 2014
Do NOT feel guilty or bad for not being able/willing to provide 24/7 care. There is a reason that there are professionals for that line of work. Sometimes an adult child is able to handle it, but often that is the exception, rather than the rule. You have to think creatively sometimes...as a personal anecdote, when my beloved mother-in-law was suffering from early-onset Alzheimer's Disease, I (surprising to me, since human bodily functions normally squick me out) had no problems bathing her and taking her to the toilet, etc. when my father-in-law (her sole caregiver) needed a week's break a few times per year. Yet, when my Dad needed similar personal assistance, just the thought of handling his bedside urinal grossed me out. So don't feel bad if you can't personally handle it - every situation is different.
Best of luck to you, I'm so sorry you and your family are having to go through this.
posted by Oriole Adams at 2:46 PM on June 28, 2014
I am a doctor at a major medical center.
They will consult the inpatient oncology service, that is usually done when the diagnosis comes back from a biopsy. They can't give you your treatment options until they know what they are treating.
The pancreatitis treatment is not palliative - pain medication and IV fluids are the treatment for pancreatitis no matter who you are (and nothing or only clear liquids by mouth).
I will warn you, the oncologist will often give you the option for chemo and radiation even when it is unlikely to improve her quality of life or her health. Please talk to the palliative care service too regardless of what is said by the oncologist. Your mom has many health issues and you will need to discuss goals of care.
Not all hospice is home hospice. Ask social work about residential hospice. I'll be back with more thoughts later!
posted by treehorn+bunny at 3:01 PM on June 28, 2014
They will consult the inpatient oncology service, that is usually done when the diagnosis comes back from a biopsy. They can't give you your treatment options until they know what they are treating.
The pancreatitis treatment is not palliative - pain medication and IV fluids are the treatment for pancreatitis no matter who you are (and nothing or only clear liquids by mouth).
I will warn you, the oncologist will often give you the option for chemo and radiation even when it is unlikely to improve her quality of life or her health. Please talk to the palliative care service too regardless of what is said by the oncologist. Your mom has many health issues and you will need to discuss goals of care.
Not all hospice is home hospice. Ask social work about residential hospice. I'll be back with more thoughts later!
posted by treehorn+bunny at 3:01 PM on June 28, 2014
if you can possibly be there when the doctor rounds you have a better chance of finding out what is going on
Yes - this, a thousand times this. Doctors generally come in the morning (sometime from maybe 7 - 10:30ish. Ask the nurses when.) and then they might not come back later. If you miss them, you can miss important info, so be there, ready to ask questions and take notes, during this time if you possibly can.
posted by LobsterMitten at 3:34 PM on June 28, 2014
Yes - this, a thousand times this. Doctors generally come in the morning (sometime from maybe 7 - 10:30ish. Ask the nurses when.) and then they might not come back later. If you miss them, you can miss important info, so be there, ready to ask questions and take notes, during this time if you possibly can.
posted by LobsterMitten at 3:34 PM on June 28, 2014
I'm not sure if this will help you, but I thought I would share my experience when my grandma was diagnosed and later died from lung cancer. Like your mom, she went in to the hospital for something unrelated. They found a mass and I want to say it took at least a week, if not two to have the cancer fully diagnosed and staged. At the hospital, they did not treat her cancer. They worked on getting her well enough to go home. She did manage to get well enough to go home. She was given the option of chemo in pill form and/or radiation. She chose to just go with the radiation. The goal was to slow the cancer down and buy her a little extra time.
During this time, she lived alone and hospice workers would visit her daily and she could always call if she needed help. There were times where she felt like she was suffocating and she would end up in the emergency room, where they would drain her lungs.
After a couple of these visits, the hospital recommended an inpatient hospice. I'm not sure how it works where you are living, but my grandma was sent to a hospice that was basically in an old mansion. It was beautiful and peaceful and it felt like she was in a home. The nurses were helpful and kind and the facility only handled hospice cases as opposed to the typical rehab center. I know this type of facility isn't available everywhere since we couldn't find a place for my grandpa (on the other side of the family) when he needed one. If this type of hospice is available, I highly recommend it.
I wanted to share my story with you in case it helps. I'm guessing at this point, you haven't seen an oncologist yet since the cancer is still being graded, so they won't have any real answers for you yet.
posted by parakeetdog at 4:07 PM on June 28, 2014
During this time, she lived alone and hospice workers would visit her daily and she could always call if she needed help. There were times where she felt like she was suffocating and she would end up in the emergency room, where they would drain her lungs.
After a couple of these visits, the hospital recommended an inpatient hospice. I'm not sure how it works where you are living, but my grandma was sent to a hospice that was basically in an old mansion. It was beautiful and peaceful and it felt like she was in a home. The nurses were helpful and kind and the facility only handled hospice cases as opposed to the typical rehab center. I know this type of facility isn't available everywhere since we couldn't find a place for my grandpa (on the other side of the family) when he needed one. If this type of hospice is available, I highly recommend it.
I wanted to share my story with you in case it helps. I'm guessing at this point, you haven't seen an oncologist yet since the cancer is still being graded, so they won't have any real answers for you yet.
posted by parakeetdog at 4:07 PM on June 28, 2014
I'm an inpatient nurse on a high-acuity unit. herrdoktor and treehorn + bunny are very smart doctors. I would only add that, depending on the hospital, it may not be possible for your mother to get a consult to oncology or palliative care until the weekend is over. Hang in there.
posted by shiny blue object at 7:02 PM on June 28, 2014
posted by shiny blue object at 7:02 PM on June 28, 2014
I have nothing particularly medically helpful to add, but please try to be open to the reassurance people are offering that none of what you're feeling is shameful or unreasonable. That you love someone doesn't alleviate the burdens of becoming responsible for the kind of care you're talking about; that's why there's help for the most loving of families in this situation and others. Plenty of people who love deeply and richly need help handling each other for all kinds of reasons. Love is great for so many things, but it doesn't do work on its own. What does work is still people's minds and arms and backs and hands, and that takes time and resources, and even if the love is unlimited, those things are not. You have to do all you can to treat yourself gently when you have to acknowledge those limits, I think.
I'm so sorry this is happening. Good thoughts, and as you've already been told: hang in. There's help.
posted by Linda_Holmes at 8:20 PM on June 28, 2014
I'm so sorry this is happening. Good thoughts, and as you've already been told: hang in. There's help.
posted by Linda_Holmes at 8:20 PM on June 28, 2014
I didn't have a lot of time on my hands earlier and didn't get to preview herrdoktor's fantastic response - I'm back but I just wanted to say that he has basically said everything I wanted to take more time to say!
Only additional thing I have to share - the best article I've ever read about an advanced cancer diagnosis is this New Yorker piece, Letting Go by Atul Gawande. I hope you might find it useful as you navigate this challenging situation. Best wishes.
posted by treehorn+bunny at 9:25 PM on June 28, 2014
Only additional thing I have to share - the best article I've ever read about an advanced cancer diagnosis is this New Yorker piece, Letting Go by Atul Gawande. I hope you might find it useful as you navigate this challenging situation. Best wishes.
posted by treehorn+bunny at 9:25 PM on June 28, 2014
Your post is really heartbreaking, and I really hope this all goes as smoothly as possible.
I recently left the hospital following surgery for colon cancer. That's all the expertise I've got, here. Not a doctor, not a lawyer, not a person with a dying parent, knock wood. All I can offer is hunches, encouragement, and the perspective of somebody who was talking about palliative care for myself, not so long ago.
The first thing that leaps out at me is, you should not feel guilty about the maelstrom of emotions you're feeling now. You are in a horrible position, and you are doing everything you can to do right by your mom. You have been her primary caretaker for many years. Most people never go that far for their parents, or anywhere near it.
It seems to me that physically transporting her to see an oncologist should not be such a huge hurdle. Is she able to sit in a wheelchair? I haven't been very mobile since my surgery and every time I visit the hospital they put me in a wheelchair and wheel me around. Maybe there are reasons why this can't be done for your mom, but I haven't heard them yet.
In any case, the grim truth is that she might not live long enough for some of these things you're worried about to really become issues. For now, maybe it makes sense to just put on a brave front and be kind of vague about what's going to happen. You really don't know what's ahead, so maybe you should just try to keep smiling and tell her you'll take care of her. Even if you can't take care of her as much as you want to, I think it's obvious you'll take care of her as much as you can. Tell her you'll be there for her, and you'll do everything you can.
And: the wiping the butt thing. Isn't it awful, how our minds seem to go there, when we think of caring for our dying parents? Everybody worries about wiping mom's butt. I think it's just such a gross, vivid image, it seems to capture so much about the horror and the loss and the reversal of the parent-child role. I've never done it, and I pray I never have to. But I've done some heartbreaking, disgusting things in this life, and I'm still here. You can get used to awful things, bored by them, even.
Sometimes, things happen and they seem unbearable. The bad stuff is crashing down on you and it's just too much and you cannot bear it. But then the bad stuff keeps happening, and even if your life feels like a nightmare that won't end, you get up every day and you deal with it. You feel like you're gonna go crazy, and maybe sometimes you kind of do, but there's always another phone call to make or another meal to cook and you just keep bearing the unbearable stuff.
Eventually the unbearable stuff stops, and you probably go back to something like a normal life. You can be changed, you can be scarred, you can be kind of broken. But you beared the unbearable, and life goes on.
Try not to judge yourself. You'll bear this, and you'll do the best you can. And that will be enough.
posted by Ursula Hitler at 1:39 AM on June 29, 2014
I recently left the hospital following surgery for colon cancer. That's all the expertise I've got, here. Not a doctor, not a lawyer, not a person with a dying parent, knock wood. All I can offer is hunches, encouragement, and the perspective of somebody who was talking about palliative care for myself, not so long ago.
The first thing that leaps out at me is, you should not feel guilty about the maelstrom of emotions you're feeling now. You are in a horrible position, and you are doing everything you can to do right by your mom. You have been her primary caretaker for many years. Most people never go that far for their parents, or anywhere near it.
It seems to me that physically transporting her to see an oncologist should not be such a huge hurdle. Is she able to sit in a wheelchair? I haven't been very mobile since my surgery and every time I visit the hospital they put me in a wheelchair and wheel me around. Maybe there are reasons why this can't be done for your mom, but I haven't heard them yet.
In any case, the grim truth is that she might not live long enough for some of these things you're worried about to really become issues. For now, maybe it makes sense to just put on a brave front and be kind of vague about what's going to happen. You really don't know what's ahead, so maybe you should just try to keep smiling and tell her you'll take care of her. Even if you can't take care of her as much as you want to, I think it's obvious you'll take care of her as much as you can. Tell her you'll be there for her, and you'll do everything you can.
And: the wiping the butt thing. Isn't it awful, how our minds seem to go there, when we think of caring for our dying parents? Everybody worries about wiping mom's butt. I think it's just such a gross, vivid image, it seems to capture so much about the horror and the loss and the reversal of the parent-child role. I've never done it, and I pray I never have to. But I've done some heartbreaking, disgusting things in this life, and I'm still here. You can get used to awful things, bored by them, even.
Sometimes, things happen and they seem unbearable. The bad stuff is crashing down on you and it's just too much and you cannot bear it. But then the bad stuff keeps happening, and even if your life feels like a nightmare that won't end, you get up every day and you deal with it. You feel like you're gonna go crazy, and maybe sometimes you kind of do, but there's always another phone call to make or another meal to cook and you just keep bearing the unbearable stuff.
Eventually the unbearable stuff stops, and you probably go back to something like a normal life. You can be changed, you can be scarred, you can be kind of broken. But you beared the unbearable, and life goes on.
Try not to judge yourself. You'll bear this, and you'll do the best you can. And that will be enough.
posted by Ursula Hitler at 1:39 AM on June 29, 2014
One last thing, because I haven't bloviated all over the place enough yet: try to treat yourself a bit. Don't start drinking like a sailor or eating chocolates until you get diabetes, and don't collect shiny things until you go broke. But baby yourself a little. Do things you enjoy. Find ways to escape, for a while. My god, you've earned it.
posted by Ursula Hitler at 2:09 AM on June 29, 2014
posted by Ursula Hitler at 2:09 AM on June 29, 2014
Apart from all the above, there's this: take care of yourself. No matter how much you try to prepare for this right now, things will be tough, come faster at you than you can predict, and there will be plenty of bad news in the future. I predict that some point after your mother has gone, you will look back and discover you had no time to say a proper goodbye, no time to mourn. The last isn't a problem, at that moment you will start finding time to do that, but the first may be. Apart from talking to all the medical specialists, nurses, etc, as people rightfully advise you to do above, do not forget to talk to your mother a lot. Especially if the results of the test are what you now fear they will be.
When I lost my father, I had only had contact with him for the last year or so, with a multi-year hiatus before that. I am happy to say we parted on good understanding, having said the things we wanted to say. That helps me a lot today, and it will help you a lot later. Take care, this process is never easy....
posted by DreamerFi at 8:14 AM on June 29, 2014
When I lost my father, I had only had contact with him for the last year or so, with a multi-year hiatus before that. I am happy to say we parted on good understanding, having said the things we wanted to say. That helps me a lot today, and it will help you a lot later. Take care, this process is never easy....
posted by DreamerFi at 8:14 AM on June 29, 2014
In patient hospice is for acute issues or respite, it's not a long term optionin general. Medicare will only pay GIP rates for a limited time. But it can be enough time to get a plan together. Please be cautious with oncologists, I've seen them tell families who had accepted a terminal diagnosis and had a plan, that the cancer was "treatable" and rob that person of any chance to leave the hospital, go home, say good-bye. Most large hospitals have a palliative care team, if not speak to the pastoral care. I hate to say this but hospital social workers can sometimes only care about getting you out, not helping you with support so don't put all your eggs in their basket. If mom has skilled days left you can use those up in a facility before you opt for hospice but a good hospice will help you get a plan and make this work. I'm very sorry. This is a really sad tough situation. I'm a hospice and palliative care nurse if you want to memail me any specific questions. I also think most docs are not good at all with these situations, so if possible reach out to the support staff.
posted by yodelingisfun at 5:25 PM on June 29, 2014
posted by yodelingisfun at 5:25 PM on June 29, 2014
An update.
She officially has Small Cell Lung Cancer that's metastasized. We're still waiting to hear back exactly what kind and how aggressive/fast acting it is. The doctor thinks we're talking in terms of weeks.
Oncologists have visited her in the hospital and have ruled that her health is in too poor a state to treat. Treatment could very well end her life prematurely.
We did find out that since she has Medicaid in addition to Medicare, that in patient hospice will be covered. The current plan is to transfer her to a hospice center near the hospital for the immediate future. They will then see what it'll take to make her comfortable at home. We're going to try to bring her home and find solutions to her care for when I have to work.
I am finding it very difficult to deliver this news to my friends and family. Thank you everyone for endeavoring to answer my questions, it helped get me through these last few days while we waited.
posted by royalsong at 5:58 PM on July 1, 2014
She officially has Small Cell Lung Cancer that's metastasized. We're still waiting to hear back exactly what kind and how aggressive/fast acting it is. The doctor thinks we're talking in terms of weeks.
Oncologists have visited her in the hospital and have ruled that her health is in too poor a state to treat. Treatment could very well end her life prematurely.
We did find out that since she has Medicaid in addition to Medicare, that in patient hospice will be covered. The current plan is to transfer her to a hospice center near the hospital for the immediate future. They will then see what it'll take to make her comfortable at home. We're going to try to bring her home and find solutions to her care for when I have to work.
I am finding it very difficult to deliver this news to my friends and family. Thank you everyone for endeavoring to answer my questions, it helped get me through these last few days while we waited.
posted by royalsong at 5:58 PM on July 1, 2014
Last update.
Many of my concerns never came to pass. Mom passed away on the 4th. That cancer just burned through her so quickly. Thank you everyone for your answers and prayers.
posted by royalsong at 11:15 AM on July 6, 2014
Many of my concerns never came to pass. Mom passed away on the 4th. That cancer just burned through her so quickly. Thank you everyone for your answers and prayers.
posted by royalsong at 11:15 AM on July 6, 2014
Oh royalsong I'm sorry. Hope you are doing as ok as can be under the circumstances!
posted by leslies at 11:50 AM on July 6, 2014
posted by leslies at 11:50 AM on July 6, 2014
I'm so, so sorry to hear that. You must be exhausted; take care of yourself and let other people help if possible. Sending you good wishes.
posted by LobsterMitten at 2:04 PM on July 6, 2014
posted by LobsterMitten at 2:04 PM on July 6, 2014
I'm so sorry for your loss, royalsong. You're in my thoughts.
posted by something something at 9:19 AM on July 7, 2014
posted by something something at 9:19 AM on July 7, 2014
This thread is closed to new comments.
Hospital social worker, yes. Ideally you'd find out if there is an inpatient non-profit hospice, and you want to know what it takes to pay for that.
In the meantime, while she's hospitalized, be sure that you take breaks and take care of yourself - eat, drink, get some sleep, get outside of the hospital building or even go home, take a shower. Being in the hospital really messes with your head, and the best thing you can do for your mom is to keep a clear head to process information and make good decisions.
posted by LobsterMitten at 1:35 PM on June 28, 2014