Dying at home
July 8, 2015 10:59 PM Subscribe
My husband is terminally ill and probably won't live more than 6 months. We have a 7 year old son. What will it be like for our son to live at home while his father continues to decline and during his eventual death at home?
Husband was diagnosed about 10 months ago with a brain tumor, of a type that is invariably fatal. Our son was 6 at the time and we were very open about the diagnosis, the treatment, what cancer is, and that it was very serious (we did not tell him that it will eventually kill him). Our son has seen him be ill from the tumor and from the treatments but he's also seen him improve markedly at times. Husband is still feeling pretty well and has minimal symptoms but recent MRIs have shown significant progression and there are few options for treatment at this point. There may be another round of radiation but if not, he will probably die within the year, if not much sooner. Radiation may buy him a little more time but that's it. Son does not yet know this prognosis but as we know more and get closer, we will be talking with him more.
So in talking to my husband's doctor today we touched on some end-of-life issues and usually patients with this diagnosis and progression die at home with hospice care coming in to the home. Of course he could end up in a hospital at the end, we just don't know. However, as much as I want to keep our son close and as involved as he wants to be, I also wonder how terrible it will be for our son to experience his father's death in our home - a home that will be probably continue to live in after my husband dies. The nature of the progression of the disease from all accounts can be really awful: inability to walk, move, eat, speak; delirium; seizures; loss of memory; incontinence; altered behavior and emotional states - these are all common. I'm having a hard enough time figuring out how I'll cope and manage it all but I can't begin to think that a 7-year old could be okay being around that all the time. I don't like the idea of my husband dying in an institutional setting either but how do people with children do this?
We're doing all the recommended stuff with our son: leaving lines of communication open, answering any questions he has, watching for behavioral changes in him, talking to friends, family, and teachers about what's going on so they can be a support network for him. Mostly he seems fine and happy and well-adjusted.
He went to therapy with a play-based child psychologist after the initial diagnosis for about 6 months but then summer came and we wanted to have more flexibility in our schedule and since the therapy didn't seem to be doing anything and we didn't like the therapist, we stopped going.
We had started him going to the therapist just as a precautionary thing to establish a therapeutic relationship and because back then we really didn't know what to expect. We still don't for sure now, of course but the picture is getting clearer. Obviously, losing a parent is traumatic enough but is having it be a protracted process in the bedroom next to yours even worse?
Husband was diagnosed about 10 months ago with a brain tumor, of a type that is invariably fatal. Our son was 6 at the time and we were very open about the diagnosis, the treatment, what cancer is, and that it was very serious (we did not tell him that it will eventually kill him). Our son has seen him be ill from the tumor and from the treatments but he's also seen him improve markedly at times. Husband is still feeling pretty well and has minimal symptoms but recent MRIs have shown significant progression and there are few options for treatment at this point. There may be another round of radiation but if not, he will probably die within the year, if not much sooner. Radiation may buy him a little more time but that's it. Son does not yet know this prognosis but as we know more and get closer, we will be talking with him more.
So in talking to my husband's doctor today we touched on some end-of-life issues and usually patients with this diagnosis and progression die at home with hospice care coming in to the home. Of course he could end up in a hospital at the end, we just don't know. However, as much as I want to keep our son close and as involved as he wants to be, I also wonder how terrible it will be for our son to experience his father's death in our home - a home that will be probably continue to live in after my husband dies. The nature of the progression of the disease from all accounts can be really awful: inability to walk, move, eat, speak; delirium; seizures; loss of memory; incontinence; altered behavior and emotional states - these are all common. I'm having a hard enough time figuring out how I'll cope and manage it all but I can't begin to think that a 7-year old could be okay being around that all the time. I don't like the idea of my husband dying in an institutional setting either but how do people with children do this?
We're doing all the recommended stuff with our son: leaving lines of communication open, answering any questions he has, watching for behavioral changes in him, talking to friends, family, and teachers about what's going on so they can be a support network for him. Mostly he seems fine and happy and well-adjusted.
He went to therapy with a play-based child psychologist after the initial diagnosis for about 6 months but then summer came and we wanted to have more flexibility in our schedule and since the therapy didn't seem to be doing anything and we didn't like the therapist, we stopped going.
We had started him going to the therapist just as a precautionary thing to establish a therapeutic relationship and because back then we really didn't know what to expect. We still don't for sure now, of course but the picture is getting clearer. Obviously, losing a parent is traumatic enough but is having it be a protracted process in the bedroom next to yours even worse?
I don't think there's any good way. I don't think you have a choice to avoid the disease's progression, so the 'bad part' is pretty much inevitable no matter where it happens. And are you going to not let him see his father once all the 'bad part' starts? Having a parent disappear 'to the hospital' and then be gone forever has its own set of problems.
I think a lot of these things are awkward, and uncomfortable, because we don't talk about them in our society. We try to pretend that illness and dying don't involve... all those things, seizures and delirium and incontinence and incapacity. It's hard to see in those we love. But your son can still go outside, can still go to friends' houses or visit family, just like he would have to if you were visiting his dad in the hospital without him. And you will have to teach him all the ways the things you are doing for your husband are coming from love.
posted by Lady Li at 11:30 PM on July 8, 2015 [2 favorites]
I think a lot of these things are awkward, and uncomfortable, because we don't talk about them in our society. We try to pretend that illness and dying don't involve... all those things, seizures and delirium and incontinence and incapacity. It's hard to see in those we love. But your son can still go outside, can still go to friends' houses or visit family, just like he would have to if you were visiting his dad in the hospital without him. And you will have to teach him all the ways the things you are doing for your husband are coming from love.
posted by Lady Li at 11:30 PM on July 8, 2015 [2 favorites]
Do you have a social worker involved in your husband's health team yet? If not, this would be a good place to start. You've already gotten a great head start by getting your son involved with a therapist. Hospice may also have some insight on local connections for you with regard to grief or bereavement programs for your son.
You don't have your location listed in your profile, but if you Google the phrases "grief or bereavement camp" along with where you live, you should come up with camps specifically for children who are in in your son's situation. While your husband is still very much living, you might want to call these organizations and see if they have something to offer as a respite for your child (meaning, they may have programs for children of parents who are currently diagnosed but haven't died). Do you have family or close friends nearby that might be willing to take your son for a night or two if he feels that he needs a break? If that's the case, make a sleepover IOU jar now, so that should it come to that, you (and he) can feel secure knowing that if/when he needs a breather, he doesn't need to feel guilty about asking when things get rocky.
My thoughts and best wishes are with you and your family. In the meantime, please don't forget to take some time for yourself. Big, big hugs to you.
posted by dancinglamb at 11:32 PM on July 8, 2015 [11 favorites]
You don't have your location listed in your profile, but if you Google the phrases "grief or bereavement camp" along with where you live, you should come up with camps specifically for children who are in in your son's situation. While your husband is still very much living, you might want to call these organizations and see if they have something to offer as a respite for your child (meaning, they may have programs for children of parents who are currently diagnosed but haven't died). Do you have family or close friends nearby that might be willing to take your son for a night or two if he feels that he needs a break? If that's the case, make a sleepover IOU jar now, so that should it come to that, you (and he) can feel secure knowing that if/when he needs a breather, he doesn't need to feel guilty about asking when things get rocky.
My thoughts and best wishes are with you and your family. In the meantime, please don't forget to take some time for yourself. Big, big hugs to you.
posted by dancinglamb at 11:32 PM on July 8, 2015 [11 favorites]
I'm so sorry for your situation. My dad went through this, as a follow on from bowel cancer. He had delirium while in hospital after the second bowel cancer op, and they discovered the brain tumors. He had radiation therapy and was able to get another six months, mostly at home.
I was 26 and on my visits home can remember how emaciated he was towards the end. For my younger brother of 15, it was devastating to be living in that situation, because he was seeing it daily, and my mum had to devote all her time to my dad's care. If I were in charge, and knowing what I know now, I'd consider hospice care to begin before medically necessary, but when your time is otherwise going to be completely taken up with your husband's care, and before your son has to really see the worst effects of the disease progression. I do agree that to have his father "go away" to hospital / hospice has its own problems, but a lasting effect of having my dad home for as long as possible was that home itself, and particularly his bedroom became forever associated with a horrible period of time and a constant painful reminder to my brother.
Also, preserving time for your son - and for yourself - is also much more important than it will seem at the time.
posted by blue_wardrobe at 11:44 PM on July 8, 2015 [12 favorites]
I was 26 and on my visits home can remember how emaciated he was towards the end. For my younger brother of 15, it was devastating to be living in that situation, because he was seeing it daily, and my mum had to devote all her time to my dad's care. If I were in charge, and knowing what I know now, I'd consider hospice care to begin before medically necessary, but when your time is otherwise going to be completely taken up with your husband's care, and before your son has to really see the worst effects of the disease progression. I do agree that to have his father "go away" to hospital / hospice has its own problems, but a lasting effect of having my dad home for as long as possible was that home itself, and particularly his bedroom became forever associated with a horrible period of time and a constant painful reminder to my brother.
Also, preserving time for your son - and for yourself - is also much more important than it will seem at the time.
posted by blue_wardrobe at 11:44 PM on July 8, 2015 [12 favorites]
My heart goes out to you and your family. I was in a similar-but-different situation as a young teen, living with a slowly-dying grandparent.
While I've been trying to pull together an answer, others have already touched on a number of the main points I was hoping to make; but my experience was that living with the awful stuff, as hard as it can be, is in many ways better than the dislocation and distance introduced by out-of-home care (although if effective pain management is an issue, this might cease to be the case).
As dancinglamb suggests, stock up on sleepovers; they will give him time and space to decompress, and for you to focus on your husband. A no-questions-asked-right-this-minute option is especially good to have on standby.
Make sure you also create opportunities for you and your son to spend quality time together outside the house, with the focus on each other - it will help create a context for how things will be when your husband passes.
If you're not doing so already, please consider seeing a counsellor yourself - your son will be learning how to grieve from watching you, and the better you're able to handle and express your own feelings, the better equipped you'll both be to keep going through, and for the years after, your husband's passing. As much as you want to actively protect him, much of the best protection will come making sure you look after yourself.
posted by not the fingers, not the fingers at 12:07 AM on July 9, 2015 [7 favorites]
While I've been trying to pull together an answer, others have already touched on a number of the main points I was hoping to make; but my experience was that living with the awful stuff, as hard as it can be, is in many ways better than the dislocation and distance introduced by out-of-home care (although if effective pain management is an issue, this might cease to be the case).
As dancinglamb suggests, stock up on sleepovers; they will give him time and space to decompress, and for you to focus on your husband. A no-questions-asked-right-this-minute option is especially good to have on standby.
Make sure you also create opportunities for you and your son to spend quality time together outside the house, with the focus on each other - it will help create a context for how things will be when your husband passes.
If you're not doing so already, please consider seeing a counsellor yourself - your son will be learning how to grieve from watching you, and the better you're able to handle and express your own feelings, the better equipped you'll both be to keep going through, and for the years after, your husband's passing. As much as you want to actively protect him, much of the best protection will come making sure you look after yourself.
posted by not the fingers, not the fingers at 12:07 AM on July 9, 2015 [7 favorites]
Best answer: Obviously not everybody's experience of this will be the same, but I have sort of lived this. When I was 5 and my brother was 7, my mum died of breast cancer. She'd been ill since I was about 18 months old, and she died at home with hospice nurses coming in to care for her. I lived in the house she died in until I was 18.
My brother and I have discussed it now we're in our 30s and neither of us remember very much about it. I remember sitting in hospital waiting rooms with her while she was being treated, and I remember being woken up on the day she died to go through to the next room and sit with her and say goodbye. I am so glad I got to do that, even though it's making me cry a bit just typing about it here. We went to the funeral too, and again I'm glad we did that. I lived in the house she died in until I was 18, and it was nice that there was still a wardrobe with some of her clothes in it, and I could go to the bit of the house where I'd last been with her and just sit quietly.
I do think there is some difference in that although my mum's cancer metastasised to her brain, that only manifested as delirium which was probably also down to morphine. It probably would be a bit scary for a kid to be around more unpredictable symptoms, or things that change his dad from the person he knows. That's probably where therapy will help.
My family didn't handle post-bereavement very well at all. I needed to keep talking about it and keep having people recognise that it was hard to not have my mum around, but my family went for 'let's all carry on like nothing has happened' after a suitable period elapsed. That I think was much more damaging than being in the room when my mum actually died. Please let your son have a space to talk about his dad, to miss him years later. Tell him about his dad - I wish I knew more about my mum as a person.
It was also hard to be the only kid in that situation at school or at social things -other kids aren't great at knowing what to do or say about the fact that a parent of one of their peers is dead. And for a while after my mum died I got very anxious that my dad would die too and was very clingy and stayed up at night on the stairs listening to him walk around downstairs so I could be sure he was ok. So that might be a thing too.
I am happy to talk more about this in MeMail if you want. It is hard and it's sad, but I think it's also something that made me very strong and brave. And look after yourself and your grief, and your husband and his grief because it is so hard to have to leave your family like this. I am so sorry you're all going through this.
posted by theseldomseenkid at 12:29 AM on July 9, 2015 [61 favorites]
My brother and I have discussed it now we're in our 30s and neither of us remember very much about it. I remember sitting in hospital waiting rooms with her while she was being treated, and I remember being woken up on the day she died to go through to the next room and sit with her and say goodbye. I am so glad I got to do that, even though it's making me cry a bit just typing about it here. We went to the funeral too, and again I'm glad we did that. I lived in the house she died in until I was 18, and it was nice that there was still a wardrobe with some of her clothes in it, and I could go to the bit of the house where I'd last been with her and just sit quietly.
I do think there is some difference in that although my mum's cancer metastasised to her brain, that only manifested as delirium which was probably also down to morphine. It probably would be a bit scary for a kid to be around more unpredictable symptoms, or things that change his dad from the person he knows. That's probably where therapy will help.
My family didn't handle post-bereavement very well at all. I needed to keep talking about it and keep having people recognise that it was hard to not have my mum around, but my family went for 'let's all carry on like nothing has happened' after a suitable period elapsed. That I think was much more damaging than being in the room when my mum actually died. Please let your son have a space to talk about his dad, to miss him years later. Tell him about his dad - I wish I knew more about my mum as a person.
It was also hard to be the only kid in that situation at school or at social things -other kids aren't great at knowing what to do or say about the fact that a parent of one of their peers is dead. And for a while after my mum died I got very anxious that my dad would die too and was very clingy and stayed up at night on the stairs listening to him walk around downstairs so I could be sure he was ok. So that might be a thing too.
I am happy to talk more about this in MeMail if you want. It is hard and it's sad, but I think it's also something that made me very strong and brave. And look after yourself and your grief, and your husband and his grief because it is so hard to have to leave your family like this. I am so sorry you're all going through this.
posted by theseldomseenkid at 12:29 AM on July 9, 2015 [61 favorites]
I'm so sorry for this terrible situation you're in.
I can't say if it's better to have your son see this all happening. I lean toward letting your son be there for this, but I can see both arguments, honestly. One thing to bear in mind is that if you do decide your son just can't bear this, that doesn't necessarily mean your husband has to go stay in a care facility. Perhaps your son could go on a trip to stay with relatives for a while. If these are close relatives and you present this right, your son might see this as sort of a fun or exciting trip. (In this scenario I'm assuming you wouldn't be telling him that his dad was probably going to die during the trip. It's a terribly sad way to deal with this and it may be damaging to your son in the long run, but this situation is so awful there's no easy or obvious way to deal with it.)
If you decide to keep your son at home, it would probably be good to have other members of your family coming around and spending time with him, taking him out to do stuff and just being there. Feeling like he has a larger family there to care for him will probably make him feel a little less afraid as he faces this. It could also keep him out of the house for some of the grimmer episodes and give you a break from worrying about him.
Again, you have all my sympathies.
posted by Ursula Hitler at 12:37 AM on July 9, 2015
I can't say if it's better to have your son see this all happening. I lean toward letting your son be there for this, but I can see both arguments, honestly. One thing to bear in mind is that if you do decide your son just can't bear this, that doesn't necessarily mean your husband has to go stay in a care facility. Perhaps your son could go on a trip to stay with relatives for a while. If these are close relatives and you present this right, your son might see this as sort of a fun or exciting trip. (In this scenario I'm assuming you wouldn't be telling him that his dad was probably going to die during the trip. It's a terribly sad way to deal with this and it may be damaging to your son in the long run, but this situation is so awful there's no easy or obvious way to deal with it.)
If you decide to keep your son at home, it would probably be good to have other members of your family coming around and spending time with him, taking him out to do stuff and just being there. Feeling like he has a larger family there to care for him will probably make him feel a little less afraid as he faces this. It could also keep him out of the house for some of the grimmer episodes and give you a break from worrying about him.
Again, you have all my sympathies.
posted by Ursula Hitler at 12:37 AM on July 9, 2015
I read this article recently, about a mother who was in a similar situation to you (albeit with younger sons). It discusses childhood grief. I hope it might be helpful.
posted by EndsOfInvention at 2:15 AM on July 9, 2015 [1 favorite]
posted by EndsOfInvention at 2:15 AM on July 9, 2015 [1 favorite]
my experience was that living with the awful stuff, as hard as it can be, is in many ways better than the dislocation and distance introduced by out-of-home care (although if effective pain management is an issue, this might cease to be the case).
Exactly this, in my very humble opinion based only on 3rd party experience. I would research now to find out what your options are for moving to an outside hospice if that becomes necessary for palliative management or because you can't meet his needs at home any longer.
I am dreadfully sorry this is happening to your family.
posted by DarlingBri at 2:59 AM on July 9, 2015 [2 favorites]
Exactly this, in my very humble opinion based only on 3rd party experience. I would research now to find out what your options are for moving to an outside hospice if that becomes necessary for palliative management or because you can't meet his needs at home any longer.
I am dreadfully sorry this is happening to your family.
posted by DarlingBri at 2:59 AM on July 9, 2015 [2 favorites]
I feel very unqualified to answer this but I saw a story about a (now adult son) that father died when he was very young. He knew he was dying and his father had birthday cards prepared for the major birthdays and the boys mom gave them to him each birthday.
This might be a really good way for your son to remember his dad as he was (before he got very sick) and get to "hear" his dad's voice again. A favorite quote or a tiny piece of advise in a card might mean an awful lot.
Wishing you all the best.
posted by ReluctantViking at 4:24 AM on July 9, 2015 [4 favorites]
This might be a really good way for your son to remember his dad as he was (before he got very sick) and get to "hear" his dad's voice again. A favorite quote or a tiny piece of advise in a card might mean an awful lot.
Wishing you all the best.
posted by ReluctantViking at 4:24 AM on July 9, 2015 [4 favorites]
I asked a related question a while back. Some of the answers give clearer impressions of what home hospice might be like and how other people felt about being on the caring end of it.
posted by emilyw at 4:29 AM on July 9, 2015 [2 favorites]
posted by emilyw at 4:29 AM on July 9, 2015 [2 favorites]
Best answer: My mom died of brain cancer back in October. She lived with us and was very active in my eight year old boys life. His mom is not quite right and he really cleaved to mine during the couple years we were together.
When mom couldn't get up anymore, boy started sleeping in her bed. I'd wake up and push the door open and the two of them would be awake smiling at each other. That was precious and went on until mom lost control of her bowels and we had to move her to palliative care.
Boy was present when she died. He seemed fine. I thought that since he'd witnessed the entire decline, he'd processed it.
4-6 weeks later we got hit by a big wave of coyotes and when he realized his favorite alpaca was dead, he went into beserker mode. Screamed and took off into the fog after the remaining coyotes. I could hear him slashing but it took 20 minutes to find him. He was aggressively and recklessly pursuing them. He just didn't care about himself anymore. His fish died, his dog died, my mom died, the alpaca was the last straw and he thought he was out there fighting death.
He said he couldn't kill what killed grandma and just broke down for a couple days. He took those days off school and I took those days off work and we talked on a level we'd not reached before. The two of us started sleeping in grandma's bed and I got us some therapy, mostly for advice on how to help him.
Delayed reactions are normal. You have to make sure that you are not so locked into grief that you miss the signs
posted by Mr. Yuck at 5:18 AM on July 9, 2015 [31 favorites]
When mom couldn't get up anymore, boy started sleeping in her bed. I'd wake up and push the door open and the two of them would be awake smiling at each other. That was precious and went on until mom lost control of her bowels and we had to move her to palliative care.
Boy was present when she died. He seemed fine. I thought that since he'd witnessed the entire decline, he'd processed it.
4-6 weeks later we got hit by a big wave of coyotes and when he realized his favorite alpaca was dead, he went into beserker mode. Screamed and took off into the fog after the remaining coyotes. I could hear him slashing but it took 20 minutes to find him. He was aggressively and recklessly pursuing them. He just didn't care about himself anymore. His fish died, his dog died, my mom died, the alpaca was the last straw and he thought he was out there fighting death.
He said he couldn't kill what killed grandma and just broke down for a couple days. He took those days off school and I took those days off work and we talked on a level we'd not reached before. The two of us started sleeping in grandma's bed and I got us some therapy, mostly for advice on how to help him.
Delayed reactions are normal. You have to make sure that you are not so locked into grief that you miss the signs
posted by Mr. Yuck at 5:18 AM on July 9, 2015 [31 favorites]
Best answer: You are obviously a very strong and caring mother, which will be your son's salvation. You are modelling behavior that will follow him throughout his life. That is what he will take away from this. The awful stuff will be coated over with time and forgotten but your strength of character will inspire him forever.
During this time, allow your community to embrace your son. Find a coach that will pick him up and bring him home from every team practice. Get him involved in as much as possible that takes him away from home. Allow him to see that life goes on even in the worst of times.
My children were all very close to my father. They treated him as if he were their dad and he cared for them as if they were his children instead of his grandchildren. They were there in his home when he died after a long illness. My youngest begs to go to his house and to sit in his chair, where they used to sit together. That is her place to remember him. My middle child took a few months before she was able to go back to the house where she saw him die. She's fine now. My son, who was closest to him, lost it for awhile and moved to another state to try and reconnect with his birth father. He is now moving back home (age 17) and has asked to live with my mother, to feel closer to my dad. All three children had a different reaction to their loss. You can't predict how it is going to affect them. You just do your best and pray a lot.
Some hospice services offer music therapy where they send a musician to your house to play, but you have to ask for it. Ask for it.
posted by myselfasme at 5:30 AM on July 9, 2015 [5 favorites]
During this time, allow your community to embrace your son. Find a coach that will pick him up and bring him home from every team practice. Get him involved in as much as possible that takes him away from home. Allow him to see that life goes on even in the worst of times.
My children were all very close to my father. They treated him as if he were their dad and he cared for them as if they were his children instead of his grandchildren. They were there in his home when he died after a long illness. My youngest begs to go to his house and to sit in his chair, where they used to sit together. That is her place to remember him. My middle child took a few months before she was able to go back to the house where she saw him die. She's fine now. My son, who was closest to him, lost it for awhile and moved to another state to try and reconnect with his birth father. He is now moving back home (age 17) and has asked to live with my mother, to feel closer to my dad. All three children had a different reaction to their loss. You can't predict how it is going to affect them. You just do your best and pray a lot.
Some hospice services offer music therapy where they send a musician to your house to play, but you have to ask for it. Ask for it.
posted by myselfasme at 5:30 AM on July 9, 2015 [5 favorites]
Don't hesitate to bring in hospice now. Most patients are eligible for the last 6 months of life, but the average patient dies on day 7 of hospice (ie, hospice is brought in too late). Hospice providers are amazing and may have great support ideas and referral connections for your son (and you).
Wishing you all strength and peace.
posted by Maarika at 5:40 AM on July 9, 2015 [9 favorites]
Wishing you all strength and peace.
posted by Maarika at 5:40 AM on July 9, 2015 [9 favorites]
Total agreement with Maarika. Please get in touch with your local hospice provider now. They have experience in working with families who have been in your situation.
posted by shiny blue object at 5:51 AM on July 9, 2015 [3 favorites]
posted by shiny blue object at 5:51 AM on July 9, 2015 [3 favorites]
I'm sorry that your family is having to go through this. I think the suggestions to talk to social workers or hospice workers are the best, remember to keep talking to them too as circumstances change.
One thing to consider is that until the past generation or so most people did pass away at home surrounded by family. My mother reminded us of this constantly when we questioned her decision to hospice my father at home.
posted by wwax at 6:46 AM on July 9, 2015
One thing to consider is that until the past generation or so most people did pass away at home surrounded by family. My mother reminded us of this constantly when we questioned her decision to hospice my father at home.
posted by wwax at 6:46 AM on July 9, 2015
Best answer: Last September, my brother-in-law died of cancer in his home with his two sons, 7 and 10, in the house. He was sick for just under 3 years, with his second bout of cancer. His sons knew that he was sick, but it wasn't until the very last three months that their mother was frank and told them that he was dying.
The thing is that almost everything, when you do it for long enough, becomes routine. So, their father dying in their house last summer was their normal. Hospice was incredibly helpful, although they were called too late as was said above. Hospice provided a grief therapist for the boys who visits them still. They love her, and so does my sister. What surprised her - after their father died, for a time they were terrified to be upstairs alone. The three of them slept in the same room for a long time, and even now, they still have "sleepovers" in their mom's room.
I will say it was much easier for my sister and the boys to have their father at home. He had a protracted hospital stay earlier in the summer that meant she was at the hospital with him most of the time, and the boys were with family and friends during the day. That was very stressful for all of them, and visiting their father in the hospital was simultaneously scary for them and reassuring that they could see him in person. When he finally came home, they relaxed somewhat and things felt slightly more normal.
There's no good way for your family to go through this, but I do think planning ahead and making decisions about what you can handle and what you'll need help doing make things smoother. I'm sorry you have this road ahead, and I hope you have comfort and love through it.
posted by gladly at 7:10 AM on July 9, 2015 [2 favorites]
The thing is that almost everything, when you do it for long enough, becomes routine. So, their father dying in their house last summer was their normal. Hospice was incredibly helpful, although they were called too late as was said above. Hospice provided a grief therapist for the boys who visits them still. They love her, and so does my sister. What surprised her - after their father died, for a time they were terrified to be upstairs alone. The three of them slept in the same room for a long time, and even now, they still have "sleepovers" in their mom's room.
I will say it was much easier for my sister and the boys to have their father at home. He had a protracted hospital stay earlier in the summer that meant she was at the hospital with him most of the time, and the boys were with family and friends during the day. That was very stressful for all of them, and visiting their father in the hospital was simultaneously scary for them and reassuring that they could see him in person. When he finally came home, they relaxed somewhat and things felt slightly more normal.
There's no good way for your family to go through this, but I do think planning ahead and making decisions about what you can handle and what you'll need help doing make things smoother. I'm sorry you have this road ahead, and I hope you have comfort and love through it.
posted by gladly at 7:10 AM on July 9, 2015 [2 favorites]
Best answer: In my experience, having lost my grandfather, aunt, and mother to terminal illness when all three were young, it was far better to experience their passing in my home and not have it kept from me. My grandfather died in his 50s when I was eight after 5 years of cancer and stroke recovery - I lived next door to him because my mother was one of his caregivers. At the end, he was taken to the hospital and it was very difficult for me to understand that he had actually died (I missed my last visit with him and have never gotten over it). My aunt died in hospice after being cared for at home and I spent literally most of a decade pretending that she was just busy and we hadn't talked in awhile. It was extremely hard when I finally faced up to what had happened.
Ultimately, my mom died at home seven months after a diagnosis of pancreatic cancer. I was her primary caregiver, I was in my mid-20s, and I learned firsthand that it was infinitely preferable to face Death with her than to have it removed from me and made abstract and try to deal with it after the fact. My cousins who were barely school-aged were with us up until a few hours before she died (they had to go to bed, it was very late) and they have had other losses since then that I have witnessed them process in a very open, loving and mature way. I really have to attribute it mostly to my wonderful and supportive family, but also to the fact that Death is not a far-off, abstract concept to them - they know what Death means, they have witnessed it first hand and come out the other side.
I am so sorry for the loss you and your son are facing. I am so grateful you are facing it all together.
posted by annathea at 8:01 AM on July 9, 2015 [2 favorites]
Ultimately, my mom died at home seven months after a diagnosis of pancreatic cancer. I was her primary caregiver, I was in my mid-20s, and I learned firsthand that it was infinitely preferable to face Death with her than to have it removed from me and made abstract and try to deal with it after the fact. My cousins who were barely school-aged were with us up until a few hours before she died (they had to go to bed, it was very late) and they have had other losses since then that I have witnessed them process in a very open, loving and mature way. I really have to attribute it mostly to my wonderful and supportive family, but also to the fact that Death is not a far-off, abstract concept to them - they know what Death means, they have witnessed it first hand and come out the other side.
I am so sorry for the loss you and your son are facing. I am so grateful you are facing it all together.
posted by annathea at 8:01 AM on July 9, 2015 [2 favorites]
I have no direct experience with this, but a child in my son's preschool lost her father to pancreatic cancer this year, with a period of hospice care at home. The child's mother kept the teachers in the loop, and when they made the decision to discontinue further treatment, they had the teachers forward an email to all the parents explaining briefly what was happening and that their child might be talking about it at school. When the child's father passed away, another email was sent to the parents, and the class had a general life-cycle discussion, and when the child returned to class they all read The Invisible String together. The other children decorated hearts that were bound into a book to give her.
The parents' first email mentioned that they had been working with a counselor and a social worker, and I would echo those in this thread who suggested that.
Depending on your situation when school starts back, I'd definitely make sure to stay in close contact with the teacher regarding when your son's had a particularly tough night, or week, or what have you so that they can be sympathetic rather than annoyed if he has trouble in class. My son's teachers were very kind and supportive when his baby sister was in and out of intensive care this winter, which shattered his routines and shot up his stress level.
I am so sorry for the difficult time you are facing.
posted by telepanda at 8:26 AM on July 9, 2015 [4 favorites]
The parents' first email mentioned that they had been working with a counselor and a social worker, and I would echo those in this thread who suggested that.
Depending on your situation when school starts back, I'd definitely make sure to stay in close contact with the teacher regarding when your son's had a particularly tough night, or week, or what have you so that they can be sympathetic rather than annoyed if he has trouble in class. My son's teachers were very kind and supportive when his baby sister was in and out of intensive care this winter, which shattered his routines and shot up his stress level.
I am so sorry for the difficult time you are facing.
posted by telepanda at 8:26 AM on July 9, 2015 [4 favorites]
I think you have to keep your options open as you go.
My grandfather, in his last weeks, did and said things to my mother that she will never get over. She wouldn't let me see him, and I was 32. He did not die like in the movies.
I think part of that is that they had pretty crappy home hospice care, and he was undermedicated, and good home hospice can probably help manage the situation so it's not that awful, but it may just not be do-able at home. If you have the option of a good hospice facility, you can sometimes do better pain/comfort management, there's equipment for keeping them actually clean, there's bedsore remediation.
The hospice my grandmother went to had (nice, comfortable) fold-out sofas in every patient's room and there were no visiting hour restrictions, and multiple nurses to manage medication and oxygen and IV lines, orderlies and powerchairs and slings for lifting and moving, a patient bath (at standing-up height) with a sling. There was a kitchen and living room and shower facilities for families. Maybe not every area has one of these, but if you have one don't rule it out.
The one big huge upside to doing it at home is the ability to keep more of the normal routine for your son, but it's not going to be normal really, so don't make that the only reason you don't do something different if circumstances require it. Having a totally obliterated routine is a fair trade-off for not living in a situation that is frightening or that will deeply color his memories of his father.
posted by Lyn Never at 8:57 AM on July 9, 2015 [1 favorite]
My grandfather, in his last weeks, did and said things to my mother that she will never get over. She wouldn't let me see him, and I was 32. He did not die like in the movies.
I think part of that is that they had pretty crappy home hospice care, and he was undermedicated, and good home hospice can probably help manage the situation so it's not that awful, but it may just not be do-able at home. If you have the option of a good hospice facility, you can sometimes do better pain/comfort management, there's equipment for keeping them actually clean, there's bedsore remediation.
The hospice my grandmother went to had (nice, comfortable) fold-out sofas in every patient's room and there were no visiting hour restrictions, and multiple nurses to manage medication and oxygen and IV lines, orderlies and powerchairs and slings for lifting and moving, a patient bath (at standing-up height) with a sling. There was a kitchen and living room and shower facilities for families. Maybe not every area has one of these, but if you have one don't rule it out.
The one big huge upside to doing it at home is the ability to keep more of the normal routine for your son, but it's not going to be normal really, so don't make that the only reason you don't do something different if circumstances require it. Having a totally obliterated routine is a fair trade-off for not living in a situation that is frightening or that will deeply color his memories of his father.
posted by Lyn Never at 8:57 AM on July 9, 2015 [1 favorite]
I just wanted to chime in and mention that my grandmother died in a free-standing hospice facility and visiting her in the last week of her life was entirely unlike visiting someone in a hospital. Family members were given the key code for the facility so they could enter anytime day or night as they wanted; we visited a bit after midnight near the end and were able to walk right in and spend as much time with her in her room as we wanted/needed. It was a pretty peaceful place, with no beeping machines or obvious medical equipment in her room, and to the extent it was institutional it was more like a dorm room than a medical facility.
I think it's worth exploring what (if any) free-standing hospice facilities are available in your area, so you are aware of what your options are *other* than ending up in the emergency room / intensive care if the level of care your husband requires ends up being more than you can provide with home-based hospice. I can see the logic in what a lot of people are saying above about not hiding your husband's death from your son by having him just disappear one day, but I don't know that is incompatible with your husband moving to a freestanding hospice facility. In thinking about how to best support your son through this time, I think it's important to not only consider the effect of seeing his father so ill (which may be unavoidable if you want to avoid the suddenly-disappearing-one-day thing) but also to consider whether caring for your husband at home will take up all of your time and attention in a way that leaves your son to cope alone.
posted by iminurmefi at 9:25 AM on July 9, 2015 [1 favorite]
I think it's worth exploring what (if any) free-standing hospice facilities are available in your area, so you are aware of what your options are *other* than ending up in the emergency room / intensive care if the level of care your husband requires ends up being more than you can provide with home-based hospice. I can see the logic in what a lot of people are saying above about not hiding your husband's death from your son by having him just disappear one day, but I don't know that is incompatible with your husband moving to a freestanding hospice facility. In thinking about how to best support your son through this time, I think it's important to not only consider the effect of seeing his father so ill (which may be unavoidable if you want to avoid the suddenly-disappearing-one-day thing) but also to consider whether caring for your husband at home will take up all of your time and attention in a way that leaves your son to cope alone.
posted by iminurmefi at 9:25 AM on July 9, 2015 [1 favorite]
I am so, so sorry for you and your family. Of course there is no easy way.
I feel it's worth asking what your husband wants. It's understandable if he's not sure, but his preference should weigh heavily.
When my dear friend died at home, he was 35 and his kids were 3 and 5. Intentionally or not--I'll never know--he disengaged from the kids to a remarkable degree as the end got nearer. They knew he was very sick, but at the same time, he was there and not speaking to them when they tried to interact with him. Their ability to adapt was astounding.
He was detached but not delusional. My point is that kids can adapt to having a parent who is extremely ill. If/when your husband becomes delusional, it may be better for him to be in a hospital (kids adapt to only seeing a parent in a hospital, too, whether because of illness or accidents). Your son may be able to handle a certain level of detachment, but that does not mean he'd be well served have last memories of being berated or some such if/when his father doesn't understand what he's doing/saying. Arranging to visit the father he knows (when sleeping if necessary) may be better than risking delusional outbursts at home if it comes to that.
Again, your husband should have a say in this while he is still of sound mind. You will have more peace with later decisions if you know you're respecting his wishes.
Great advice upthread--mostly just wanted to extend deepest sympathies and some hope: my friend's kids are wonderful, exuberant, well-adjusted kids, despite the terrible loss they suffered several years ago. It sounds like you're doing a wonderful job looking out for your son.
posted by whoiam at 10:49 AM on July 9, 2015
I feel it's worth asking what your husband wants. It's understandable if he's not sure, but his preference should weigh heavily.
When my dear friend died at home, he was 35 and his kids were 3 and 5. Intentionally or not--I'll never know--he disengaged from the kids to a remarkable degree as the end got nearer. They knew he was very sick, but at the same time, he was there and not speaking to them when they tried to interact with him. Their ability to adapt was astounding.
He was detached but not delusional. My point is that kids can adapt to having a parent who is extremely ill. If/when your husband becomes delusional, it may be better for him to be in a hospital (kids adapt to only seeing a parent in a hospital, too, whether because of illness or accidents). Your son may be able to handle a certain level of detachment, but that does not mean he'd be well served have last memories of being berated or some such if/when his father doesn't understand what he's doing/saying. Arranging to visit the father he knows (when sleeping if necessary) may be better than risking delusional outbursts at home if it comes to that.
Again, your husband should have a say in this while he is still of sound mind. You will have more peace with later decisions if you know you're respecting his wishes.
Great advice upthread--mostly just wanted to extend deepest sympathies and some hope: my friend's kids are wonderful, exuberant, well-adjusted kids, despite the terrible loss they suffered several years ago. It sounds like you're doing a wonderful job looking out for your son.
posted by whoiam at 10:49 AM on July 9, 2015
Hi there - I'm very sorry that you and your family are going through this.
Where I live, there was a young woman whose husband recently passed away due to brain cancer. She chronicles this journey on her blog, My Husband's Tumor on how it affected her whole family (she has a very young son). You might see some of yourself in her and maybe that will help?
I think what made this an extraordinary story throughout our community was her perspective, which if you go, you will see throughout her writing, "It's not a cancer story, it's a love story. With some cancer."
I wish the best for you and your family.
posted by wocka wocka wocka at 11:51 AM on July 9, 2015
Where I live, there was a young woman whose husband recently passed away due to brain cancer. She chronicles this journey on her blog, My Husband's Tumor on how it affected her whole family (she has a very young son). You might see some of yourself in her and maybe that will help?
I think what made this an extraordinary story throughout our community was her perspective, which if you go, you will see throughout her writing, "It's not a cancer story, it's a love story. With some cancer."
I wish the best for you and your family.
posted by wocka wocka wocka at 11:51 AM on July 9, 2015
My father passed away at home last year of cancer.
It took 3 weeks. There were 2 of us , both adults to help take care of him.
We had very good in home support as well. Nurse, helpers, therapists etc.
It was difficult, and the last couple of days, impossible .
Even though some equipment can brought in, the home is not designed as a hospice .
Bathroom , bathing , mobility is very difficult.
Second is the time element.
Don't underestimate this. I know we did.
It's 24 hour care. But you also have to sleep, shop, take care of your son etc, etc
You're not generally sleeping when the nurse or therapist is over. And when they leave, well someone has to be awake. We were 2 adults splitting up a 24 hour day, but many times both of you are up.
It can be difficult to handle a bedridden patient, but even harder to handle a somewhat mobile drugged out one.
A hospice is geared towards end of life care, and can provide excellent 24 hour support.
It's what they do.
posted by yyz at 12:13 PM on July 9, 2015 [1 favorite]
It took 3 weeks. There were 2 of us , both adults to help take care of him.
We had very good in home support as well. Nurse, helpers, therapists etc.
It was difficult, and the last couple of days, impossible .
Even though some equipment can brought in, the home is not designed as a hospice .
Bathroom , bathing , mobility is very difficult.
Second is the time element.
Don't underestimate this. I know we did.
It's 24 hour care. But you also have to sleep, shop, take care of your son etc, etc
You're not generally sleeping when the nurse or therapist is over. And when they leave, well someone has to be awake. We were 2 adults splitting up a 24 hour day, but many times both of you are up.
It can be difficult to handle a bedridden patient, but even harder to handle a somewhat mobile drugged out one.
A hospice is geared towards end of life care, and can provide excellent 24 hour support.
It's what they do.
posted by yyz at 12:13 PM on July 9, 2015 [1 favorite]
The folks at Maine's Center for Grieving Children and/or the national organization likely have resources.
I would try to make some memories, not just y doing special things, but also simple things that you document. Like watching a favorite family movie together, taking a picture or 2, commenting I always love it when we all watch this together. Start a photo album with comments.
Clearly and unambiguously accept the times when your child is a jerk. Even during this time, kids get to have bad days, but it may be guilt-inducing to have a bad day when Dad and the family are facing such hard times.
Get and accept help as much as possible.
I'm so sorry you all have to go through this.
posted by theora55 at 1:20 PM on July 9, 2015
I would try to make some memories, not just y doing special things, but also simple things that you document. Like watching a favorite family movie together, taking a picture or 2, commenting I always love it when we all watch this together. Start a photo album with comments.
Clearly and unambiguously accept the times when your child is a jerk. Even during this time, kids get to have bad days, but it may be guilt-inducing to have a bad day when Dad and the family are facing such hard times.
Get and accept help as much as possible.
I'm so sorry you all have to go through this.
posted by theora55 at 1:20 PM on July 9, 2015
I had never been in a hospice until my grandmother died this past May. I join the advice above that you take a tour and see what is available to you before you make your choice.
I had no idea that hospice could mean a beautiful space, so unlike the hospital- open, loving, safe, comfortable, quiet- and so unlike what we would have been able to offer her in our own homes. There was no scurrying, no endless fluorescent lights, no constant beeping in the background, and yet the facility was built to do what it does. For instance, patients in their beds could be wheeled straight out into the garden or onto the covered patio of the facility to enjoy the sun and fresh air. There is no way we could have offered that ability. It also had a room for kids, with half dedicated to toys for young kids and a separate area for teens/young adults with a big television.
It was a peaceful and beautiful environment, and I can say only that I am glad that that is where my grandmother died. I take comfort in knowing that places like that exist.
posted by aabbbiee at 9:21 AM on July 10, 2015 [1 favorite]
I had no idea that hospice could mean a beautiful space, so unlike the hospital- open, loving, safe, comfortable, quiet- and so unlike what we would have been able to offer her in our own homes. There was no scurrying, no endless fluorescent lights, no constant beeping in the background, and yet the facility was built to do what it does. For instance, patients in their beds could be wheeled straight out into the garden or onto the covered patio of the facility to enjoy the sun and fresh air. There is no way we could have offered that ability. It also had a room for kids, with half dedicated to toys for young kids and a separate area for teens/young adults with a big television.
It was a peaceful and beautiful environment, and I can say only that I am glad that that is where my grandmother died. I take comfort in knowing that places like that exist.
posted by aabbbiee at 9:21 AM on July 10, 2015 [1 favorite]
Response by poster: Thank you for all your kind words and suggestions. To be clear, there isn't any question that my son will be involved and present during all of this and moving to a hospice facility is not the plan right now. I was mostly interested in how you get children through a parent's terminal illness at home and I got lots of good advice here. We are availing ourselves of the hospital's social work department and other available support services and will continue to do so.
posted by Mrs Roy G Biv at 10:33 PM on July 13, 2015
posted by Mrs Roy G Biv at 10:33 PM on July 13, 2015
Response by poster: Hello I'm following up on this post now that my husband has died.
He transitioned to in-home hospice care in mid-October and we signed on with the agency that his oncologist recommended since they has supposedly done a lot of training on neuro issues and felt like they had the best relationship with this agency. It was not a good experience. It may just be that his diagnosis and course were too much to manage at home or maybe the agency just wasn't any good or some combination thereof.
I'm not sure what could have alleviated the situation but in the end, it wasn't our son that couldn't handle it, it was me. To begin with, I had no idea how much of a burden the caregiving would be. After about two weeks of steadily declining health that necessitated round-the-clock care, I hired in-home help to assist me but after 10 days of that, I still couldn't take it. Our son was not too freaked out but it definitely was a lot for him to contend with, seeing the daily decline and there was hardly ever a moment where it let up and I felt like I could devote time to our son. The stream of visitors and hospice workers was endless and created all sort of logistical issues and in the case of visitors meant that I was not only taking care of my husband and son but was also playing hostess all day long. There were hardly ever any opportunities for me to sit quietly with my husband and feel connected to him as a wife and partner. It sucked.
About a month after he started on hospice, we moved him to an inpatient facility. It was out of pocket but SO WORTH IT. I could spend all day there or as much time as I wanted and not be making myself crazy. The stress levels immediately went down and the care that he received there was a million times better than what he could have at home. Our son spent many hours there and was comfortable there and I was able to sit by his side, enjoy visits with friends, and feel unburdened by the unrelenting caregiver role. I could sleep at night and not be a zombie all day and knew that he better off. When the time of his death drew near, we had people with us who knew what to expect, how to handle it, and how to support all of us. He was there for about 10 days before he died and it was the best possible experience.
Dying at home, though a romantic notion, is not all it's cracked up to be.
posted by Mrs Roy G Biv at 10:44 PM on November 30, 2015 [6 favorites]
He transitioned to in-home hospice care in mid-October and we signed on with the agency that his oncologist recommended since they has supposedly done a lot of training on neuro issues and felt like they had the best relationship with this agency. It was not a good experience. It may just be that his diagnosis and course were too much to manage at home or maybe the agency just wasn't any good or some combination thereof.
I'm not sure what could have alleviated the situation but in the end, it wasn't our son that couldn't handle it, it was me. To begin with, I had no idea how much of a burden the caregiving would be. After about two weeks of steadily declining health that necessitated round-the-clock care, I hired in-home help to assist me but after 10 days of that, I still couldn't take it. Our son was not too freaked out but it definitely was a lot for him to contend with, seeing the daily decline and there was hardly ever a moment where it let up and I felt like I could devote time to our son. The stream of visitors and hospice workers was endless and created all sort of logistical issues and in the case of visitors meant that I was not only taking care of my husband and son but was also playing hostess all day long. There were hardly ever any opportunities for me to sit quietly with my husband and feel connected to him as a wife and partner. It sucked.
About a month after he started on hospice, we moved him to an inpatient facility. It was out of pocket but SO WORTH IT. I could spend all day there or as much time as I wanted and not be making myself crazy. The stress levels immediately went down and the care that he received there was a million times better than what he could have at home. Our son spent many hours there and was comfortable there and I was able to sit by his side, enjoy visits with friends, and feel unburdened by the unrelenting caregiver role. I could sleep at night and not be a zombie all day and knew that he better off. When the time of his death drew near, we had people with us who knew what to expect, how to handle it, and how to support all of us. He was there for about 10 days before he died and it was the best possible experience.
Dying at home, though a romantic notion, is not all it's cracked up to be.
posted by Mrs Roy G Biv at 10:44 PM on November 30, 2015 [6 favorites]
I'm very sorry for your loss, and thankful you returned to tell your story. If some of us end having to make similar difficult decisions, knowing this went for you could be very helpful.
posted by Ursula Hitler at 1:42 AM on December 1, 2015
posted by Ursula Hitler at 1:42 AM on December 1, 2015
I'm very, very sorry to hear of your husband's passing. My best friend is a hospice RN (I, too, am an RN but in a somewhat different field). We speak often about the different family dynamics she encounters - she's worked both inpatient and home care. None of it is ever easy and every patient leaves their own indelible mark on their care giver - whether they related to us or not. It's our privilege as RNs to provide what's called a 'good death'.
I'm so glad to hear that you found a way to have some peace and calm in the final days leading up to his death. That, alone, is worth it's weight in gold. Godspeed to your husband, and big hugs to you and your son.
posted by dancinglamb at 1:48 AM on December 1, 2015
I'm so glad to hear that you found a way to have some peace and calm in the final days leading up to his death. That, alone, is worth it's weight in gold. Godspeed to your husband, and big hugs to you and your son.
posted by dancinglamb at 1:48 AM on December 1, 2015
I am so sorry for your loss, but thank you for sharing your experience.
posted by Lyn Never at 11:03 AM on December 1, 2015
posted by Lyn Never at 11:03 AM on December 1, 2015
I am so sorry for your loss, and I am glad that you and your son were in a more peaceful and less stressful place, both physically and emotionally, when your husband died. Thank you for following up.
posted by aabbbiee at 12:43 PM on December 1, 2015
posted by aabbbiee at 12:43 PM on December 1, 2015
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posted by Marie Mon Dieu at 11:27 PM on July 8, 2015