Parent w/Stage IV cancer - can't eat at least 1 week

[Anonymous]

Anonymous wrote:

Anonymous wrote:My MIL had ALS and couldn't swallow, was on a feeding tube and wanted to go hospice. They removed the tube. It took her 4 weeks to pass, even without water. It took much longer than anyone expected.

All of these stories are so sad. Was your mom unconscious? I can't imagine. -NP

She lost consciousness after the first week. Her body just didn't want to go. It was awful for everyone.

[Anonymous]

Anonymous wrote:If your loved one wants to go home, please take them home to die with hospice. We are talking days, maybe weeks, not months.

My aunt went over a month, hospice only planned to show up 1x per week (nurse) and 2X per week (aide). I was expected to do 24/7 care on my own. She ended up going inpatient, and I’m left wracked with guilt and terrible PTSD as a result of the whole experience. Mind you this was AFTER 1.5 months of my being there already. When the paramedics came one night, they took one look at me and two of the guys pulled me aside and told me the truth - that this was unsustainable and would result in horror for me. They’ve seen it way too much.

Unless OP has a tremendous amount of help, OP should NOT take their loved one home to die. It’s amazing how many people refuse to be there in the end and leave it to one or maybe two people

[Anonymous]

Anonymous wrote:My MIL had ALS and couldn't swallow, was on a feeding tube and wanted to go hospice. They removed the tube. It took her 4 weeks to pass, even without water. It took much longer than anyone expected.

THIS!! I’m so sorry for what you experienced, pp.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If your loved one wants to go home, please take them home to die with hospice. We are talking days, maybe weeks, not months.

My aunt went over a month, hospice only planned to show up 1x per week (nurse) and 2X per week (aide). I was expected to do 24/7 care on my own. She ended up going inpatient, and I’m left wracked with guilt and terrible PTSD as a result of the whole experience. Mind you this was AFTER 1.5 months of my being there already. When the paramedics came one night, they took one look at me and two of the guys pulled me aside and told me the truth - that this was unsustainable and would result in horror for me. They’ve seen it way too much.

Unless OP has a tremendous amount of help, OP should NOT take their loved one home to die. It’s amazing how many people refuse to be there in the end and leave it to one or maybe two people

+1

[Anonymous]

With an NG feeding tube, a person can live until the cancer kills them. The NG feeding tube gives them all the nutrition they need. I think many of the responses you got missed that part, OP. They think your parent is getting no food or water. A person can either die very quickly from stage 4 cancer or can live a very long time. We don’t have enough information to tell you.

I’m very sorry you’re going through this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If your loved one wants to go home, please take them home to die with hospice. We are talking days, maybe weeks, not months.

My aunt went over a month, hospice only planned to show up 1x per week (nurse) and 2X per week (aide). I was expected to do 24/7 care on my own. She ended up going inpatient, and I’m left wracked with guilt and terrible PTSD as a result of the whole experience. Mind you this was AFTER 1.5 months of my being there already. When the paramedics came one night, they took one look at me and two of the guys pulled me aside and told me the truth - that this was unsustainable and would result in horror for me. They’ve seen it way too much.

Unless OP has a tremendous amount of help, OP should NOT take their loved one home to die. It’s amazing how many people refuse to be there in the end and leave it to one or maybe two people

i have family members who died at home with hospice and yeah, it's unsustainable if it's one caregiver without help and the person lives more than a couple weeks--all you need for hospice is to be told a doctor sets your life expectancy at 6 months or less but many people live much longer. All of my family members went longer than that on hospice and all of them had some outside professional help (private duty CNA, etc.)

[Anonymous]

We’ve done hospice at home a few times and it IS horrible but also went fine overall and was what both people strongly wanted. We did hire nursing care beyond what hospice provided. It also REALLY helps imo if you have a family member who is a nurse or a doctor, even if they are not there in person. Several siblings took significant leave. I agree that if you have fewer resources (people and money, but especially people) you may want to do it elsewhere. It also just depends on how much suffering you can absorb/tolerate. Make sure you investigate any long term care policies that are left.

It seems odd to me now that I could become so attached to a building at the moment buildings no longer matter, but I’m sure I’ll get it when I get there.

[Anonymous]

Anonymous wrote:We’ve done hospice at home a few times and it IS horrible but also went fine overall and was what both people strongly wanted. We did hire nursing care beyond what hospice provided. It also REALLY helps imo if you have a family member who is a nurse or a doctor, even if they are not there in person. Several siblings took significant leave. I agree that if you have fewer resources (people and money, but especially people) you may want to do it elsewhere. It also just depends on how much suffering you can absorb/tolerate. Make sure you investigate any long term care policies that are left.

It seems odd to me now that I could become so attached to a building at the moment buildings no longer matter, but I’m sure I’ll get it when I get there.

It has nothing to do with how much suffering you can absorb/tolerate. There are physical limitations to caregiving and putting yourself in a position where you could collapse from sheer exhaustion is just not wise.

[Anonymous]

My mom passed away in a hospice facility. We were there with her. The facility was beautiful and she had a really nice room. There was 24/7 nursing care to administer pain meds and monitor vitals. I would highly recommend that route.

[Anonymous]

Anonymous wrote:So sorry. My dad had stage 4 pancreatic. Wasn’t hospitalized and had his last meal early November. He died early Feb after 4 days without water. It’s horrible.

Looking back, would you do anything different? (not being mean, my family is facing a similar decision)

[Anonymous]

Anonymous wrote:

Anonymous wrote:If your loved one wants to go home, please take them home to die with hospice. We are talking days, maybe weeks, not months.

My aunt went over a month, hospice only planned to show up 1x per week (nurse) and 2X per week (aide). I was expected to do 24/7 care on my own. She ended up going inpatient, and I’m left wracked with guilt and terrible PTSD as a result of the whole experience. Mind you this was AFTER 1.5 months of my being there already. When the paramedics came one night, they took one look at me and two of the guys pulled me aside and told me the truth - that this was unsustainable and would result in horror for me. They’ve seen it way too much.

Unless OP has a tremendous amount of help, OP should NOT take their loved one home to die. It’s amazing how many people refuse to be there in the end and leave it to one or maybe two people

Glad I read this post. Facing this now with a close loved one... Being told Hospice is so great and about all the resources they provide. Shocking to hear 1x per week for the nurse? Recently had the same loved one home on "home health" and he had a health nurse coming 3x per week, a bath aid 1x, PT 4x.

[Anonymous]

We paid an aide to be with my mom 8-4 and various family members provided care during the hours the aide wasn't there. She had stage 4 cancer but was not in pain until the last two days before she died and we gave her morphine on her gums every hour for those two days.

Hospice came once or twice a week and were available by phone. From diagnosis to death was only three months, it would have been more difficult if it had been a lot longer. For instance, the week or two before she died I was thinking of taking a long leave from my job to save the money we paid the aide and take care of her myself during the day. We paid the aide with mom's money and it would have run out eventually.

My mom did not want to be in a hospital or any other facility and we were able to and glad to care for her at home ourselves with the help of the aide while we were at work. Me and my two siblings plus some adult grandchildren took turns.

She did not stop eating until the last few days but she was eating less than usual for quite awhile before that.

[Anonymous]

My mom is 75 and has stage IV.C rectal cancer, and we were told Virginia hospice would not accept her with an NG tube but that it varies by state. If you do a care facility, you also would need to screen for whether they can/will take your parent with a tube or even IV nutrition - that might limit you to a skilled nursing facility. Notwithstanding those limitations, I second the recommendations to avoid home care without a ton of help. Even with my mom at a care facility with hospice for the last four months, the responsibilities on me as her only child with young kids of my own and an in-person job have been absolutely crushing - I'm physically ill and mentally unwell, with no time to do anything about it other than keep going.

[Anonymous]

Anonymous wrote:We’ve done hospice at home a few times and it IS horrible but also went fine overall and was what both people strongly wanted. We did hire nursing care beyond what hospice provided. It also REALLY helps imo if you have a family member who is a nurse or a doctor, even if they are not there in person. Several siblings took significant leave. I agree that if you have fewer resources (people and money, but especially people) you may want to do it elsewhere. It also just depends on how much suffering you can absorb/tolerate. Make sure you investigate any long term care policies that are left.

It seems odd to me now that I could become so attached to a building at the moment buildings no longer matter, but I’m sure I’ll get it when I get there.

Translation:

It went well because I had a ton of help and there was only to hire professionals.

Fact: People can WANT anything but if they don’t have the resources and the people, it’s unfair to demand that of one person, or even two. It can be months of exhausting care. Paramedics were QUITE clear that they have seen dire things happen to caregivers, enough that they quickly assessed the situation and told me frankly I was in danger. That set me straight real fast.

[Anonymous]

Anonymous wrote:My mom is 75 and has stage IV.C rectal cancer, and we were told Virginia hospice would not accept her with an NG tube but that it varies by state. If you do a care facility, you also would need to screen for whether they can/will take your parent with a tube or even IV nutrition - that might limit you to a skilled nursing facility. Notwithstanding those limitations, I second the recommendations to avoid home care without a ton of help. Even with my mom at a care facility with hospice for the last four months, the responsibilities on me as her only child with young kids of my own and an in-person job have been absolutely crushing - I'm physically ill and mentally unwell, with no time to do anything about it other than keep going.

I’m the PP who went through the same, and I didn’t have young kids at home. OMG, this is awful! I don’t doubt that you are physically and mentally unwell. If you can take family leave, please do, but I’m sure you explored that. People think “oh, cousins, patient’s sisters, etc will be there to help but the reality is, that’s patently untrue in most cases. I went through this, and to a degree, still am. The difference is now I am choosing myself. I have told my sister and my parents: “I’m sorry this is getting and harder as you age, but I’ve offered many solutions and you refuse all of them. There’s nothing more I can do. You have to help yourselves by accepting help from others”