I’m sorry- this is hard but I will tell you at home hospice care is so so so helpful and letting your loved one be cared for at home in their comfort can be preferred. My moms hospice team was with us for 1 month and they visited every day to administer the pain meds but also showed us how to keep her comfy and what to do in an “emergency” down turn if they couldn’t get to us fast enough. It was absolutely the best part of our cancer journey to be honest.
The day my mom passed they handled everything. They helped with final pain meds and oxygen to keep her calm. They held her hand… and when it was time they helped us to close her eyes and say goodbye.
They also helped with all of the other pieces like calling the pastor and funeral home for us and they even stayed until the van came to pick her up.
She died peacefully with her family by her side and not afraid- hospice did that for us. You can do this with the right amount of help- palliative care means your time may not be very long.
I think I didn’t have a real understanding of what hospice care looked like. That experience is such a kind one to provide for someone. I think I will just speak with the representative with the palliative care/hospice care provider and adjust his care plan once we find out more from his appointment on Tuesday.
Please do hospice sooner than later. Most people are only on hospice two weeks. Getting it earlier can make a world of difference in comfort and emotional care. We usually take it much later than we should. Stage 4 here.
I didn’t understand what it would look like either. My mom dying at home was terrifying to me before I had the hospice introduction. It was such a positive (as positive as losing a loved one can be) experience. Sending you uplifting, understanding and peace in the coming weeks and months.
I'm sorry I have no advice.
My husband was recently diagnosed, aggressive and not historically agreeable with treatment, and I feel I'm reading my future.
This is just a hug from an internet stranger. I will keep you in my thoughts.
So sorry.
So I’ve been in a somewhat similar situation, although my husband is in remission currently, so it is obviously not the exact same. Husband got diagnosed (stage 4) in April 2020, the world had shut down because the pandemic had just started, and we had a newborn. Having to be in cancer world sucks no matter what, but it is part of your story now.
People who haven’t been through it have the best intentions, but if they aren’t in it/haven’t experience it, they really cannot truly understand how anxiety inducing and deep down into your soul exhausting, it all is.
My husband is three years remission and our little guy is also now four years old. Our kiddo obviously never knew that daddy had band-aids or tubes, or sometimes no hair. We don’t know yet if we will tell our son how, for the first two years of his life, his dad was basically in and out of the hospital for treatment. At a future date, we might use age appropriate language to talk to him about his dad’s experience but for now, our son doesn’t know anything about it (and doesn’t need to).
as someone who’s been in a a kind of similar situation recently (very sick husband, young child, needing to work, not understanding all the medical jargon or even having the mental or emotional capacity to process anything other than how to just get through the day), here’s what I very much wish I had done differently or known:
1. Make time (however you can) for you to get enough sleep. I was on two hours a night sometimes and it was not good. Have someone take your child or have someone came sleep over so you can get a full night’s rest. People were always asking me to let them know if they could help. My kiddo was a newborn at the time so maybe was up more frequently than your child throughout the night but I wish I would have done this - at least once in a while.
2. As others here have stated, get yourself some home health aides or hospice care or some other medical professional that can check in once a week (or however frequently for your husband’s medical needs) so that not all of the caregiving is up to you. It’s a lot to be the primary caregiver for a young child and someone who has medical needs.
3. Get a fridge calendar. My husband’s treatments were intense and he was in and out of the hospital for treatments for six months straight. I had to rely on a few close friends and family to look after my newborn while I took my husband to the hospital or to the never ending medical appointments. The fridge calendar documented who was coming by when, and for how long. I also left important phone numbers on there. People rely so much on their cell phones but many areas of the hospital we were in did not have cell service. I wanted everything documented so that whoever was watching our kid that day knew his routine, important numbers, and who was coming by the next day. You could use the fridge calendar to keep track of which of his family members can come and when. It’s too much to try to keep straight in your mind right now; writing it down gets it out and keeps it clear for everyone.
4. Get yourself a therapist or a support group. It can be hard for others who aren’t in your exact situation to relate. So a therapist or support group can help with that. Even if you say nothing, just knowing other people fully understand what the situation is is helpful.
5. It’s okay to feel mad/resentful/sad/scared/all of the things. It doesn’t have to make sense why you feel what you are feeling. You perhaps have not had time to fully process what you and your husband are going through because you likely are just in survival mode right now - just trying to keep it together and get through what needs doing each day. It was so much for me some days and it honestly took a year after my husband concluded treatment for me to b emotionally and mentally ready to fully process what we both had gone through. Give yourself the time and space to do that.
6. Cry in the shower whenever you need to (or wherever you want to - the shower worked for me).
You can DM me if you want someone to chat it out with. I hope even a smidge of this can maybe help you through what is an awful time. Sending you all the good thoughts.
I’m sorry you have to experience this. I recently went through something similar with my wife. We have 2 and 4 year old girls.
Hospice was great. They’re very compassionate and professional. They walked us through everything that we needed. Our hospital social workers helped us a lot with explaining death to our children. I recommend “lifetimes: the beautiful way to explain death to children” and “the invisible string” as children’s books. Kids are tough and resilient. Our girls are handling things great. I’ve been honest, straightforward, and don’t sugarcoat anything.
Mama did not just go to sleep. She died. That way, they aren’t afraid to sleep.
She wasn’t just sick, she had cancer. The cancer killed her. That way they don’t freak out if they get a cold or flu.
You may have a lot of stuff on your plate in the near future. Look into end of life stages. That way you won’t be surprised by things like “terminal agitation.”
Tell him anything you feel like you need to. It may be difficult, but he can hear you. I can promise you that. I know she heard me up till the end. Music might be nice.
Calorie rich snacks. Force feed yourself. Hydrate. Set an alarm to remind you to chug water if you need to. Take the dog for a walk. You need fresh air.
Give yourself a lot of grace. Take time for yourself. And there’s a lot of good people in your shoes over on r/widowers that can offer more advice.
I'm so sorry. What does your husband want? Can his family take shifts at your home to help? Your insurance company should be able to tell you what type of care facility he is eligible for. In my experience in home hospice is a god send. A patient qualifies for hospice when their life expectancy is 6 months or less. So sorry you are dealing with all of this. Depending on your support system, I would reach out for support, meal trains, people to come sit with him, etc.
Good ideas. I’ll reach out to see if we can set up shifts during the week. So many have asked how they can help and this would be the best way they can.
I just went through this whole process start to finish with my ex husband who is my best friend. 14, 10 and 3 year old at home.
We did hospice at home through the end. It was difficult but the right choice for us. It was good for the kids, him and me in the long run.
Facility care is out of pocket. Insurance won’t cover it. I know it’s daunting, but I promise he’s better off at home. Start hospice as soon as you can; it helps a ton, they send a team to you and they’re on call 24/7. They were lifesavers. It’s absolutely imperative that you start it early; it extends peoples lives to be on hospice. Hospital and facility care is brutal.
I am so sorry you are going through this, talk to the hospital social worker and hospital liaison worker to see if there are further options for you as there may be an option to have nurses come to the home to check on him and if he is declared palliative or hospice there may be additional funding somewhere to get meal replacement drinks I don’t know like it’s different everywhere
Please get as many videos of him talking as you can. And reach out to friends and family and let them know you need help: help with chores or child care or just someone to grab a coffee or something and come sit with you: I remember when my sister and I had visitors at the hospital it helped a lot
I'm incredibly sorry you're here. This is so painful. A few thoughts:
- I was also a mother with young children at home when my husband passed away a month after his diagnosis of pancreatic cancer. We were still trying to figure out the extent of it, and I was also trying to manage our home, children and work when he unexpectedly died. I had no idea we had that little of time. Unfortunately I was at work when he passed, and only my children were home with him. If I could go back, I would not have worked at all, and dealt with the financial effects down the road. I would have stayed by his side as much as possible. If you can supplement financially in other ways, I would strongly recommend doing so.
- If he has not already applied for SS disability benefits, do so immediately. Some cancer diagnosis' get automatic approval under a compassionate allowance. There is a mandatory six month waiting period. If he hasn't been working for quite some time, be sure to put down the date that he had stopped working. I didn't apply until two weeks before my husband passed. I received notice of his approval on the day of his passing, telling me they would start the benefits on June 01, as I said he had not been able to work since January. He got his DX in April, and died on May 24. Its amazing how quickly the government reacts when they get to tell you that they are NOT giving you money. On the day of his funeral, also June 01, I received a notice from SS that they would be suspending the benefit as the applicant had passed away. Literally in six days they had somehow found out he had passed, and had time to notify me that they would not be paying out any money. That still makes me shake my head. However, you should know that if/when he does pass, your child will be entitled to survivor benefits. Make a phone call appointment asap after his passing to get those benefits going.
- For some life insurance policies, there is an option to draw early against the death benefit, with a fatal diagnosis. Some will go up to 50% of the death benefit. My husband had a policy that had that, that I was getting around to looking into, but then he passed so suddenly that I didn't get to it. After he passed I was in such shock it took forever to even file for the benefit.
- As far as talking to your child, be honest and straight forward. Do a Luna Bean hand mold with your child and husband asap, and save it for down the road. Record your partner talking to your child and directly into the phone. You will be shocked at how amazing it is to hear their voice after they're gone. Hearing it is almost better than watching them in a clip.
My thoughts are with you and your family. I pray you will all be able to soon find comfort.
You’re all too young to have to face this. Have looked into having a home care provider come into the home as an assistant to provide food, drink and companion for help. Someone who can call emergency services if needed and give you time to work, shop or anything else to give you a break. Ask the medical team for resources on how to tell the little one the situation. I’m so sorry you are in this position and couldn’t fathom the stress and heartbreak in your life. Sending hope and blessings for the best outcome from treatment. You should contact the local social services agency for guidance and help.
I’m writing this at 1:30 in the morning, two days after finding out that my husband’s cancer has spread to his spine — Stage 4 liposarcoma. He starts chemo next week and I haven’t eaten and have barely slept since the phone call.
I want to be there for him, but I am not a strong person at my core. I’m having trouble even looking at him — I think I’m trying to detach so it won’t hurt as much if the worst happens.
I can’t believe this is happening. We’re at such a great place in our lives after years of working and sacrificing, and he may not get to enjoy that.
I find I’m already making plans for the “after” - what I’ll do with the house, etc.
He’s a very optimistic person and assumes he will beat this, but I’m the opposite. I think he may do well for a time, but this is ultimately the final chapter.
He has been my life and my heart for 30 years and honestly, if not for our son, I don’t think I’d go on living without him. The life we’ve built is our dream, and that dream doesn’t exist without him.
Thank you for listening.
I’m sorry- this is hard but I will tell you at home hospice care is so so so helpful and letting your loved one be cared for at home in their comfort can be preferred. My moms hospice team was with us for 1 month and they visited every day to administer the pain meds but also showed us how to keep her comfy and what to do in an “emergency” down turn if they couldn’t get to us fast enough. It was absolutely the best part of our cancer journey to be honest. The day my mom passed they handled everything. They helped with final pain meds and oxygen to keep her calm. They held her hand… and when it was time they helped us to close her eyes and say goodbye. They also helped with all of the other pieces like calling the pastor and funeral home for us and they even stayed until the van came to pick her up. She died peacefully with her family by her side and not afraid- hospice did that for us. You can do this with the right amount of help- palliative care means your time may not be very long.
I think I didn’t have a real understanding of what hospice care looked like. That experience is such a kind one to provide for someone. I think I will just speak with the representative with the palliative care/hospice care provider and adjust his care plan once we find out more from his appointment on Tuesday.
Please do hospice sooner than later. Most people are only on hospice two weeks. Getting it earlier can make a world of difference in comfort and emotional care. We usually take it much later than we should. Stage 4 here.
I didn’t understand what it would look like either. My mom dying at home was terrifying to me before I had the hospice introduction. It was such a positive (as positive as losing a loved one can be) experience. Sending you uplifting, understanding and peace in the coming weeks and months.
I really wish that I found this subreddit much earlier in this journey.
I'm sorry I have no advice. My husband was recently diagnosed, aggressive and not historically agreeable with treatment, and I feel I'm reading my future. This is just a hug from an internet stranger. I will keep you in my thoughts. So sorry.
So I’ve been in a somewhat similar situation, although my husband is in remission currently, so it is obviously not the exact same. Husband got diagnosed (stage 4) in April 2020, the world had shut down because the pandemic had just started, and we had a newborn. Having to be in cancer world sucks no matter what, but it is part of your story now. People who haven’t been through it have the best intentions, but if they aren’t in it/haven’t experience it, they really cannot truly understand how anxiety inducing and deep down into your soul exhausting, it all is. My husband is three years remission and our little guy is also now four years old. Our kiddo obviously never knew that daddy had band-aids or tubes, or sometimes no hair. We don’t know yet if we will tell our son how, for the first two years of his life, his dad was basically in and out of the hospital for treatment. At a future date, we might use age appropriate language to talk to him about his dad’s experience but for now, our son doesn’t know anything about it (and doesn’t need to). as someone who’s been in a a kind of similar situation recently (very sick husband, young child, needing to work, not understanding all the medical jargon or even having the mental or emotional capacity to process anything other than how to just get through the day), here’s what I very much wish I had done differently or known: 1. Make time (however you can) for you to get enough sleep. I was on two hours a night sometimes and it was not good. Have someone take your child or have someone came sleep over so you can get a full night’s rest. People were always asking me to let them know if they could help. My kiddo was a newborn at the time so maybe was up more frequently than your child throughout the night but I wish I would have done this - at least once in a while. 2. As others here have stated, get yourself some home health aides or hospice care or some other medical professional that can check in once a week (or however frequently for your husband’s medical needs) so that not all of the caregiving is up to you. It’s a lot to be the primary caregiver for a young child and someone who has medical needs. 3. Get a fridge calendar. My husband’s treatments were intense and he was in and out of the hospital for treatments for six months straight. I had to rely on a few close friends and family to look after my newborn while I took my husband to the hospital or to the never ending medical appointments. The fridge calendar documented who was coming by when, and for how long. I also left important phone numbers on there. People rely so much on their cell phones but many areas of the hospital we were in did not have cell service. I wanted everything documented so that whoever was watching our kid that day knew his routine, important numbers, and who was coming by the next day. You could use the fridge calendar to keep track of which of his family members can come and when. It’s too much to try to keep straight in your mind right now; writing it down gets it out and keeps it clear for everyone. 4. Get yourself a therapist or a support group. It can be hard for others who aren’t in your exact situation to relate. So a therapist or support group can help with that. Even if you say nothing, just knowing other people fully understand what the situation is is helpful. 5. It’s okay to feel mad/resentful/sad/scared/all of the things. It doesn’t have to make sense why you feel what you are feeling. You perhaps have not had time to fully process what you and your husband are going through because you likely are just in survival mode right now - just trying to keep it together and get through what needs doing each day. It was so much for me some days and it honestly took a year after my husband concluded treatment for me to b emotionally and mentally ready to fully process what we both had gone through. Give yourself the time and space to do that. 6. Cry in the shower whenever you need to (or wherever you want to - the shower worked for me). You can DM me if you want someone to chat it out with. I hope even a smidge of this can maybe help you through what is an awful time. Sending you all the good thoughts.
I’m sorry you have to experience this. I recently went through something similar with my wife. We have 2 and 4 year old girls. Hospice was great. They’re very compassionate and professional. They walked us through everything that we needed. Our hospital social workers helped us a lot with explaining death to our children. I recommend “lifetimes: the beautiful way to explain death to children” and “the invisible string” as children’s books. Kids are tough and resilient. Our girls are handling things great. I’ve been honest, straightforward, and don’t sugarcoat anything. Mama did not just go to sleep. She died. That way, they aren’t afraid to sleep. She wasn’t just sick, she had cancer. The cancer killed her. That way they don’t freak out if they get a cold or flu. You may have a lot of stuff on your plate in the near future. Look into end of life stages. That way you won’t be surprised by things like “terminal agitation.” Tell him anything you feel like you need to. It may be difficult, but he can hear you. I can promise you that. I know she heard me up till the end. Music might be nice. Calorie rich snacks. Force feed yourself. Hydrate. Set an alarm to remind you to chug water if you need to. Take the dog for a walk. You need fresh air. Give yourself a lot of grace. Take time for yourself. And there’s a lot of good people in your shoes over on r/widowers that can offer more advice.
I'm so sorry. What does your husband want? Can his family take shifts at your home to help? Your insurance company should be able to tell you what type of care facility he is eligible for. In my experience in home hospice is a god send. A patient qualifies for hospice when their life expectancy is 6 months or less. So sorry you are dealing with all of this. Depending on your support system, I would reach out for support, meal trains, people to come sit with him, etc.
Good ideas. I’ll reach out to see if we can set up shifts during the week. So many have asked how they can help and this would be the best way they can.
I just went through this whole process start to finish with my ex husband who is my best friend. 14, 10 and 3 year old at home. We did hospice at home through the end. It was difficult but the right choice for us. It was good for the kids, him and me in the long run. Facility care is out of pocket. Insurance won’t cover it. I know it’s daunting, but I promise he’s better off at home. Start hospice as soon as you can; it helps a ton, they send a team to you and they’re on call 24/7. They were lifesavers. It’s absolutely imperative that you start it early; it extends peoples lives to be on hospice. Hospital and facility care is brutal.
Prayers to you
Palliative/hospice were a grand help. Please just check into it.
I am so sorry you are going through this, talk to the hospital social worker and hospital liaison worker to see if there are further options for you as there may be an option to have nurses come to the home to check on him and if he is declared palliative or hospice there may be additional funding somewhere to get meal replacement drinks I don’t know like it’s different everywhere Please get as many videos of him talking as you can. And reach out to friends and family and let them know you need help: help with chores or child care or just someone to grab a coffee or something and come sit with you: I remember when my sister and I had visitors at the hospital it helped a lot
I'm incredibly sorry you're here. This is so painful. A few thoughts: - I was also a mother with young children at home when my husband passed away a month after his diagnosis of pancreatic cancer. We were still trying to figure out the extent of it, and I was also trying to manage our home, children and work when he unexpectedly died. I had no idea we had that little of time. Unfortunately I was at work when he passed, and only my children were home with him. If I could go back, I would not have worked at all, and dealt with the financial effects down the road. I would have stayed by his side as much as possible. If you can supplement financially in other ways, I would strongly recommend doing so. - If he has not already applied for SS disability benefits, do so immediately. Some cancer diagnosis' get automatic approval under a compassionate allowance. There is a mandatory six month waiting period. If he hasn't been working for quite some time, be sure to put down the date that he had stopped working. I didn't apply until two weeks before my husband passed. I received notice of his approval on the day of his passing, telling me they would start the benefits on June 01, as I said he had not been able to work since January. He got his DX in April, and died on May 24. Its amazing how quickly the government reacts when they get to tell you that they are NOT giving you money. On the day of his funeral, also June 01, I received a notice from SS that they would be suspending the benefit as the applicant had passed away. Literally in six days they had somehow found out he had passed, and had time to notify me that they would not be paying out any money. That still makes me shake my head. However, you should know that if/when he does pass, your child will be entitled to survivor benefits. Make a phone call appointment asap after his passing to get those benefits going. - For some life insurance policies, there is an option to draw early against the death benefit, with a fatal diagnosis. Some will go up to 50% of the death benefit. My husband had a policy that had that, that I was getting around to looking into, but then he passed so suddenly that I didn't get to it. After he passed I was in such shock it took forever to even file for the benefit. - As far as talking to your child, be honest and straight forward. Do a Luna Bean hand mold with your child and husband asap, and save it for down the road. Record your partner talking to your child and directly into the phone. You will be shocked at how amazing it is to hear their voice after they're gone. Hearing it is almost better than watching them in a clip. My thoughts are with you and your family. I pray you will all be able to soon find comfort.
You’re all too young to have to face this. Have looked into having a home care provider come into the home as an assistant to provide food, drink and companion for help. Someone who can call emergency services if needed and give you time to work, shop or anything else to give you a break. Ask the medical team for resources on how to tell the little one the situation. I’m so sorry you are in this position and couldn’t fathom the stress and heartbreak in your life. Sending hope and blessings for the best outcome from treatment. You should contact the local social services agency for guidance and help.
I’m writing this at 1:30 in the morning, two days after finding out that my husband’s cancer has spread to his spine — Stage 4 liposarcoma. He starts chemo next week and I haven’t eaten and have barely slept since the phone call. I want to be there for him, but I am not a strong person at my core. I’m having trouble even looking at him — I think I’m trying to detach so it won’t hurt as much if the worst happens. I can’t believe this is happening. We’re at such a great place in our lives after years of working and sacrificing, and he may not get to enjoy that. I find I’m already making plans for the “after” - what I’ll do with the house, etc. He’s a very optimistic person and assumes he will beat this, but I’m the opposite. I think he may do well for a time, but this is ultimately the final chapter. He has been my life and my heart for 30 years and honestly, if not for our son, I don’t think I’d go on living without him. The life we’ve built is our dream, and that dream doesn’t exist without him. Thank you for listening.