In-home hospice for adult who lives alone
April 27, 2022 9:17 AM Subscribe
My mother is starting in-home hospice due to her advanced cancer. How do we coordinate care with hospice given that there is no "primary" caregiver? Interested in any direct experience that could give us ideas. More details below.
My two siblings and my aunt and I have all been pitching in with helping my mother, but none of us can be the full-time primary caregiver. All of us "kids" have full-time jobs. One sibling and I have small children and live 2-3 hours away by car. My aunt is retired but lives a plane-ride away, so she visits for two weeks and then goes home for 1-2 weeks.
Hospice provides a nurse visit twice a week and 20 hours of home aide care, but what about the other hours? Mom's condition has been up and down. Sometimes she can get around her apartment independently, and other times she is too weak or tired. She was quite sick over the weekend and my aunt had a hard time getting her to the bathroom, but she has bounced back. Mom is cognitively well and has a fierce desire for independence. She does not want to leave home. Mom does not have a partner.
We don't have a prognosis at this stage so we don't know how long we'll need to manage this, but hospice is authorized for people whose life expectancy is less than 6 months.
Any thoughts on how folks have handled this would be very welcome.
My two siblings and my aunt and I have all been pitching in with helping my mother, but none of us can be the full-time primary caregiver. All of us "kids" have full-time jobs. One sibling and I have small children and live 2-3 hours away by car. My aunt is retired but lives a plane-ride away, so she visits for two weeks and then goes home for 1-2 weeks.
Hospice provides a nurse visit twice a week and 20 hours of home aide care, but what about the other hours? Mom's condition has been up and down. Sometimes she can get around her apartment independently, and other times she is too weak or tired. She was quite sick over the weekend and my aunt had a hard time getting her to the bathroom, but she has bounced back. Mom is cognitively well and has a fierce desire for independence. She does not want to leave home. Mom does not have a partner.
We don't have a prognosis at this stage so we don't know how long we'll need to manage this, but hospice is authorized for people whose life expectancy is less than 6 months.
Any thoughts on how folks have handled this would be very welcome.
You need the help of her friends and neighbors. Direct experience: have one of y’all be on call with a phone tree of people who have indicated they would like to help. Call down the list. This is especially helpful if you can get people to give you guidelines about when they’re available. Ideally, you can have a handful of people who are able to go by once a day just to check in and say hi.
ALSO depending on where you live, you can call EMTs for assistance with getting a fragile person up off the floor without it incurring a bill. This was unknown to me and greatly helpful. Don’t do it all the time, but it’s a great pinch help when someone shows up and she’s unable to get up and they aren’t strong enough to help.
It is great to have a lock box like realtors use to keep a key in so that people can let themselves in without your mom having to get up.
There will come a point when she needs someone there all the time. We handled that with a calendar and someone we found who doesn’t work for hospice and was about $15/hour to come sleep overnight and be there in the morning until someone else could arrive. It was not cheap, but it was much cheaper than an agency.
posted by Bottlecap at 9:37 AM on April 27, 2022 [6 favorites]
ALSO depending on where you live, you can call EMTs for assistance with getting a fragile person up off the floor without it incurring a bill. This was unknown to me and greatly helpful. Don’t do it all the time, but it’s a great pinch help when someone shows up and she’s unable to get up and they aren’t strong enough to help.
It is great to have a lock box like realtors use to keep a key in so that people can let themselves in without your mom having to get up.
There will come a point when she needs someone there all the time. We handled that with a calendar and someone we found who doesn’t work for hospice and was about $15/hour to come sleep overnight and be there in the morning until someone else could arrive. It was not cheap, but it was much cheaper than an agency.
posted by Bottlecap at 9:37 AM on April 27, 2022 [6 favorites]
In my experience, this is when you, your siblings and other family members make a plan for a rotation that leaves one of you there at all times. Or you force your mom to go into a nursing home. Or, if someone's wealthy, you pay for daily health care aides (though that can seriously go awry if there's no one there to monitor the situation).
An "eldercare advisor" can help you understand if there's any additional home help your mom will qualify for via the state, and/or what options are available in that town.
posted by BlahLaLa at 9:40 AM on April 27, 2022 [19 favorites]
An "eldercare advisor" can help you understand if there's any additional home help your mom will qualify for via the state, and/or what options are available in that town.
posted by BlahLaLa at 9:40 AM on April 27, 2022 [19 favorites]
My mom died of breast cancer very quickly (one month from diagnosis to her passing) and was in the hospital for the last two weeks of her life, so I don't have experience with home hospice care. What I can tell you is that eventually you simply cannot get away with not having someone there 24/7, and that day may come sooner than you think. Both her cognitive and physical abilities could fade very quickly and it will be extremely dangerous (not to mention probably difficult and overwhelming for her) to be left alone at all.
So I echo BlahLaLa that you realistically have three options: 1) work with the other people in her life to make sure that someone is there at all times, 2) move your mom somewhere where someone is there it all times, or 3) pay for someone to be there at all times.
posted by anotheraccount at 9:43 AM on April 27, 2022 [15 favorites]
So I echo BlahLaLa that you realistically have three options: 1) work with the other people in her life to make sure that someone is there at all times, 2) move your mom somewhere where someone is there it all times, or 3) pay for someone to be there at all times.
posted by anotheraccount at 9:43 AM on April 27, 2022 [15 favorites]
Has hospice assigned your mom a social worker? If so, I think this might be a good thing to discuss in a family conference with the social worker. Basically, you're all going to have to have a brutally honest discussion about your mom's prognosis (not just time, but what her remaining time is likely to look like), her local support system, what hospice is going to be able to provide as things progress, and what your family's resources are like in terms of time and money. And I would recommend that everyone look into their jobs' family leave policies, because there may come a time when someone needs to be there round-the-clock, and if nobody can do that, then you're going to have to break it to your mom that she may not be able to stay at home.
This stuff is incredibly hard. You have my sympathy and solidarity.
posted by ArbitraryAndCapricious at 9:44 AM on April 27, 2022 [16 favorites]
In my experience, this is when you, your siblings and other family members make a plan for a rotation that leaves one of you there at all times.Yeah, that's what we did.
This stuff is incredibly hard. You have my sympathy and solidarity.
posted by ArbitraryAndCapricious at 9:44 AM on April 27, 2022 [16 favorites]
I am an oncologist and the daughter of a hospice social worker, and have a lot of professional and personal experience with hospice care and what it can offer.
Most hospices that I work with recommend 24 hour support whenever possible, or at least someone who is available 24 hours and close by. As her performance status declines, this obviously becomes more important, and I think it's reasonable to talk to her hospice social worker to see what they may be able to offer in terms of custodial (e.g. nursing home) care and inpatient units. Sometimes, inpatient units can function as respite care for families who are providing 24-hour in-home care, and they need a break or have to go on a trip but the patient needs care and supervision.
A lot of families will fill gaps with hired caregivers - the costs come up fast, and in my experience, most of my families will end up filing for FMLA to allow for the time off to care for their loved one. Ultimately, if that isn't feasible for your family situation, I agree that having an honest, difficult conversation about being able to receive safe care in her home, and consideration of a care home.
I'm so sorry you're going through all of this. People talk all the time about how kids don't come with an instruction manual... but nobody talks about how hard it is to parent your parents at this time in your life or theirs. Please feel free to reach out to me through MeMail.
posted by honeybee413 at 10:04 AM on April 27, 2022 [13 favorites]
Most hospices that I work with recommend 24 hour support whenever possible, or at least someone who is available 24 hours and close by. As her performance status declines, this obviously becomes more important, and I think it's reasonable to talk to her hospice social worker to see what they may be able to offer in terms of custodial (e.g. nursing home) care and inpatient units. Sometimes, inpatient units can function as respite care for families who are providing 24-hour in-home care, and they need a break or have to go on a trip but the patient needs care and supervision.
A lot of families will fill gaps with hired caregivers - the costs come up fast, and in my experience, most of my families will end up filing for FMLA to allow for the time off to care for their loved one. Ultimately, if that isn't feasible for your family situation, I agree that having an honest, difficult conversation about being able to receive safe care in her home, and consideration of a care home.
I'm so sorry you're going through all of this. People talk all the time about how kids don't come with an instruction manual... but nobody talks about how hard it is to parent your parents at this time in your life or theirs. Please feel free to reach out to me through MeMail.
posted by honeybee413 at 10:04 AM on April 27, 2022 [13 favorites]
I went through this with my own parent last year. Same situation of living hours away, having young kids and job, fiercely independent parent who wanted to die at home. My parent was very much in denial about how much caretaking (and for how long!) a dying person requires. While yes it is true anyone could die at any time, terminal cancer has a progression that is sometimes not as fast as the patient desires. My parent decided on home hospice, and the hospice nurses were frank with me that home hospice is not an appropriate option for someone who lives alone. Your parent will need 24 hour care sooner or later, and you and your siblings are going to have to decide pretty soon what that 24 hour care is going to look like. In my parent's case, they were heavily in denial about their ability to handle things themselves. For example, their ability to safely make it to the bathroom (and later commode in the bedroom) declined months before they died. Don't assume that 24 hour care will only be needed for a short duration.
What I ended up doing is hiring home health aides through an agency and having a couple of my parent's friends help out. Home health aides are expensive, and they may or may not be comfortable with end-of-life care. Consistent scheduling can be quite difficult, and there were times where I had to jet out to my parent's town in order to cover a caregiving shift. My experience with hospice is that while they were all WONDERFUL and HARDWORKING people, they are not actually the primary support team for the patient of in-home hospice. The family are the primary support and caregivers for the in-home hospice patient. It is a tremendous gift to let someone die in the comfort of their own home if that is what they want, but it is far more work than people anticipate.
Since it's not just you helping your mom, you should probably have an honest conversation with your siblings and aunt about how much care coordination and direct caregiving you each can offer. If you anticipate needing to hire caregivers, start that process now. You should decide among yourselves who should be the main point of contact for hospice and caregivers. If your mom is anything like my parent was, she's probably still trying to have messages and such pass through her -- don't rely on that at all. It's really hard for an independent elderly person to allow other people take control of their day-to-day life, but don't let your fear of offending them keep you from doing what you need to do to ensure her safety and comfort.
posted by stowaway at 11:38 AM on April 27, 2022 [17 favorites]
What I ended up doing is hiring home health aides through an agency and having a couple of my parent's friends help out. Home health aides are expensive, and they may or may not be comfortable with end-of-life care. Consistent scheduling can be quite difficult, and there were times where I had to jet out to my parent's town in order to cover a caregiving shift. My experience with hospice is that while they were all WONDERFUL and HARDWORKING people, they are not actually the primary support team for the patient of in-home hospice. The family are the primary support and caregivers for the in-home hospice patient. It is a tremendous gift to let someone die in the comfort of their own home if that is what they want, but it is far more work than people anticipate.
Since it's not just you helping your mom, you should probably have an honest conversation with your siblings and aunt about how much care coordination and direct caregiving you each can offer. If you anticipate needing to hire caregivers, start that process now. You should decide among yourselves who should be the main point of contact for hospice and caregivers. If your mom is anything like my parent was, she's probably still trying to have messages and such pass through her -- don't rely on that at all. It's really hard for an independent elderly person to allow other people take control of their day-to-day life, but don't let your fear of offending them keep you from doing what you need to do to ensure her safety and comfort.
posted by stowaway at 11:38 AM on April 27, 2022 [17 favorites]
I relied on our network of friends and an online calendar to schedule for times when I couldn't be home. I agree that having someone there all the time is key. Is she part of a church or other community that might be able to step up and take on some time?
The not knowing how long you're going to be doing this is a blessing and a curse, for real -- much much sympathy for your family. Definitely look into FMLA for everyone and see what's possible.
posted by gingerbeer at 11:42 AM on April 27, 2022 [2 favorites]
The not knowing how long you're going to be doing this is a blessing and a curse, for real -- much much sympathy for your family. Definitely look into FMLA for everyone and see what's possible.
posted by gingerbeer at 11:42 AM on April 27, 2022 [2 favorites]
I went through this last year with my own mother and it became clear very, very quickly that she could not be alone. I opted to try supplemental home health care workers but they were not anywhere near cheap and it would have eaten through a ton of her savings if she'd lived much longer. In the end, we did our best to get her into a hospice and were lucky enough to get her there shortly before she passed.
posted by teleri025 at 12:48 PM on April 27, 2022 [3 favorites]
posted by teleri025 at 12:48 PM on April 27, 2022 [3 favorites]
With hospice at home the patient (or family on their behalf) still has to arrange for care by either paying a home healthcare worker or by putting together a patchwork of volunteer carers who can be there to help. Home healthcare workers cannot administer medication, so you'll have to either hire someone who can (a nurse) or have a trusted and willing friend or family member there to do it. Hospice nursing staff will come frequently, though often not daily until things are close to the end, and they are there to monitor and adjust medical comfort care only. The hospice helpers who come for 20 hours can help with things like bathing and changing dressings or attending to other needs like light clean-up or feeding.
Unfortunately, while hospice at home is a fantastic resource, it is not comprehensive. You will either have to throw a lot of money at this to hire a carer or coordinate a crew of volunteers and see what options exist for FMLA leaves for family members. The hospice social worker assigned to you will help you navigate this and will have suggested agencies you can hire to provide healthcare aid care.
posted by quince at 1:21 PM on April 27, 2022 [2 favorites]
Unfortunately, while hospice at home is a fantastic resource, it is not comprehensive. You will either have to throw a lot of money at this to hire a carer or coordinate a crew of volunteers and see what options exist for FMLA leaves for family members. The hospice social worker assigned to you will help you navigate this and will have suggested agencies you can hire to provide healthcare aid care.
posted by quince at 1:21 PM on April 27, 2022 [2 favorites]
I went through this last year with my own mother and it became clear very, very quickly that she could not be alone. I opted to try supplemental home health care workers but they were not anywhere near cheap and it would have eaten through a ton of her savings if she'd lived much longer. In the end, we did our best to get her into a hospice and were lucky enough to get her there shortly before she passed.
Similarly, I went through this a few years ago with my own mother. At first it was just having a home health aide a few days a week to help her with things like bathing and that sort of thing (she said she didn't want us to do this, but we could have) but it quickly became making sure someone was "around" all of the time. Her house was a mess of steps and difficult to manage. We put a hospital bed in a lower bedroom that had a straight shot to the bathroom but there were stairs to get her into the kitchen. Her plan was home hospice as long as that was practical and then to go to a hospice facility. She had one picked out that was where she wanted to go. Her health insurance paid for the bed and for the aide to come by a few days a week, I don't know the specifics of this.
Her house was big enough and my sister lived near enough that my sister just moved in to a spare room when it became clear that my mom was going to need someone nearby. She was home and weak but managing mostly fine and then she quite suddenly "took a turn" and was no longer coherent or able to manage anything at all. We switched to full-time people there, me or my sister during the day and an aide at night. The nighttime aides were hit or miss. Well-meaning people, all of them, but we sometimes had to choose between having an aide who was asleep through part of her shift (I get it, but that was not the job) or not having anyone there at all. At this point we were on the waiting list for the actual hospice facility which was a nervewracking week of managing her care when we were a little out of our league.
On the bright side my mom had been VERY clear about her wishes and while she was home, even when she wasn't very coherent, people would come by and if they gave us static about the plan (people will do this, it sucks, it's how people manage their own grief I think) we could just fall back to "This is the plan she wanted, we're just helping her with it" Once she went to a hospice place, she lived for another week or so and we were much more comfortable and so was she. They had much better pain management, people more skilled in end-of-life assistance, and a facility which was much more suited for someone living their last week. There were also places for us to be so we were not lurking ("Don't hover over me, live your lives" she told us) which was a blessing.
So yes, one of the conversations you may want to have with your mom is how she wants to handle a situation where things get worse. It's totally a fine thing for her to want to die at home, many people want that, but there should be a plan so that she can do this with dignity and not have something bad happen because the situation isn't set up well for what she will need. You're in my thoughts, this is hard stuff and it's a kindness to your mom that you're thinking about this.
posted by jessamyn at 4:23 PM on April 27, 2022 [8 favorites]
Similarly, I went through this a few years ago with my own mother. At first it was just having a home health aide a few days a week to help her with things like bathing and that sort of thing (she said she didn't want us to do this, but we could have) but it quickly became making sure someone was "around" all of the time. Her house was a mess of steps and difficult to manage. We put a hospital bed in a lower bedroom that had a straight shot to the bathroom but there were stairs to get her into the kitchen. Her plan was home hospice as long as that was practical and then to go to a hospice facility. She had one picked out that was where she wanted to go. Her health insurance paid for the bed and for the aide to come by a few days a week, I don't know the specifics of this.
Her house was big enough and my sister lived near enough that my sister just moved in to a spare room when it became clear that my mom was going to need someone nearby. She was home and weak but managing mostly fine and then she quite suddenly "took a turn" and was no longer coherent or able to manage anything at all. We switched to full-time people there, me or my sister during the day and an aide at night. The nighttime aides were hit or miss. Well-meaning people, all of them, but we sometimes had to choose between having an aide who was asleep through part of her shift (I get it, but that was not the job) or not having anyone there at all. At this point we were on the waiting list for the actual hospice facility which was a nervewracking week of managing her care when we were a little out of our league.
On the bright side my mom had been VERY clear about her wishes and while she was home, even when she wasn't very coherent, people would come by and if they gave us static about the plan (people will do this, it sucks, it's how people manage their own grief I think) we could just fall back to "This is the plan she wanted, we're just helping her with it" Once she went to a hospice place, she lived for another week or so and we were much more comfortable and so was she. They had much better pain management, people more skilled in end-of-life assistance, and a facility which was much more suited for someone living their last week. There were also places for us to be so we were not lurking ("Don't hover over me, live your lives" she told us) which was a blessing.
So yes, one of the conversations you may want to have with your mom is how she wants to handle a situation where things get worse. It's totally a fine thing for her to want to die at home, many people want that, but there should be a plan so that she can do this with dignity and not have something bad happen because the situation isn't set up well for what she will need. You're in my thoughts, this is hard stuff and it's a kindness to your mom that you're thinking about this.
posted by jessamyn at 4:23 PM on April 27, 2022 [8 favorites]
My mother died exactly one month ago today in home hospice. Your options are for the kids to care for her in shifts or to throw money at the problem. I didn't know this at the time, but I certainly can speak to it now.
Parents want their independence terribly. If your mom is okay with hospice, it's probably much worse than she realizes already. When we finally moved back in, we realized my mother had been unable to feed herself for days because of paralysis in her hand. She had been unable to clean for weeks. We tried to leave the house overnight to sleep in our own bed; she would wander around and do things like try to cook, then forget she had turned on the sink and flood the kitchen and fall. Two days later she could not remember that she fell or, when reminded she had, how she came to fall. She was still in palliative care, then, and would not hear of hospice! In the end we had to make the decision without her input, which felt terrible.
Having someone in home 24/7, whether it's you or a paid caregiver, is just essential. There is sadly no way around it. I left her alone--asleep, I thought--for a 20 minute phone call and she got up and fell while I was in another room. She did not lose conciousness, but also did not call for help. It does not matter how independent she is in her moments of lucidity, sadly. These will be fewer and fewer and her care needs will only grow.
What we ended up doing was this: My wife took an LOA from work to take the care shifts I could not, and I watched her all day when I wasn't at work. We didn't provide her with perfect care, because we are not nurses, but when your parent insists on dying at home but doesn't have the means to hire a caregiver, they get what you can give and no more and that's really all you can do. I was surprised myself at how little hospice actually did, and how much we were expected to do. I'm sorry you're going through this.
posted by the liquid oxygen at 11:50 AM on April 28, 2022 [7 favorites]
Parents want their independence terribly. If your mom is okay with hospice, it's probably much worse than she realizes already. When we finally moved back in, we realized my mother had been unable to feed herself for days because of paralysis in her hand. She had been unable to clean for weeks. We tried to leave the house overnight to sleep in our own bed; she would wander around and do things like try to cook, then forget she had turned on the sink and flood the kitchen and fall. Two days later she could not remember that she fell or, when reminded she had, how she came to fall. She was still in palliative care, then, and would not hear of hospice! In the end we had to make the decision without her input, which felt terrible.
Having someone in home 24/7, whether it's you or a paid caregiver, is just essential. There is sadly no way around it. I left her alone--asleep, I thought--for a 20 minute phone call and she got up and fell while I was in another room. She did not lose conciousness, but also did not call for help. It does not matter how independent she is in her moments of lucidity, sadly. These will be fewer and fewer and her care needs will only grow.
What we ended up doing was this: My wife took an LOA from work to take the care shifts I could not, and I watched her all day when I wasn't at work. We didn't provide her with perfect care, because we are not nurses, but when your parent insists on dying at home but doesn't have the means to hire a caregiver, they get what you can give and no more and that's really all you can do. I was surprised myself at how little hospice actually did, and how much we were expected to do. I'm sorry you're going through this.
posted by the liquid oxygen at 11:50 AM on April 28, 2022 [7 favorites]
I am sorry you are facing this. I have been through this twice now with both parents. As others are saying, unfortunately there really is no other option but to hire full time help or one of you being there with her. With my mom, when we started hospice it seemed she might have a good six months ahead of her, though it turned out to be only two months. My sister and I took turns living with her a month at a time. I was fortunate to be able to take carer's leave from my job. I thought I might be able to work part time remotely, but the caring role quickly became all-consuming. In fact, once you are staying up half the night to look after a sometimes delirious, disoriented person, it becomes more of a 2-person job. I was fortunate that my partner was willing to be a backup carer. With my dad things went quicker and we moved him into a nursing home for round-the-clock care. "Dying at home" requires a significant contribution from family and caregivers, I think more than most people realise. Hospice was also a lot less helpful and available than I first assumed they would be. End of life care is a financial, emotional, and physical hardship, and it comes at you faster than you can really prepare for. It was something I was happy to give, but depending on your relationship with the sick person, it can be too much to ask. End-of-life options are really not great, and as a culture we don't to a very good job of talking about it or providing structural support options.
posted by amusebuche at 2:04 AM on April 30, 2022 [1 favorite]
posted by amusebuche at 2:04 AM on April 30, 2022 [1 favorite]
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posted by JohnnyGunn at 9:30 AM on April 27, 2022 [3 favorites]