Resources for solo caregiving a potentially terminally ill parent
December 28, 2022 8:08 PM Subscribe
I will be caregiving for a very sick and deconditioned parent who could pass within the next few months. Anyone who has been in this situation - any tips, tricks, or resources that helped you caregive for a very ill loved one, even until the end?
Background:
So this is me. At the beginning of November, my mom found a breast lump. At the beginning of December, I was staring down the prospect of caregiving for a relatively independent (in terms of mobility, ADLs, etc.) person with her2+ breast cancer that would require a year of treatment, and was trying to sort out how to not lose my mind as I adjusted to this new reality. As I was trying to process emotions, hopes, fears, cultural pressures, etc., my mom ended up becoming severely ill and was admitted to the hospital for, essentially, liver failure from metastatic breast cancer. In the last 10 (I think? it's all a blur.) days, she has become increasingly ill and has lost a lot of strength and mobility. At this point she is incredibly fragile, barely getting out of bed, has been having issues with continence (more as a side effect to meds than anything,) and I'm dealing with the prospect of losing her on the order of a few months if the Hail Mary immunotherapy treatment they tried doesn't work.
I am struggling and exhausted. I have spent most of my time during this admission advocating for my mom to get proper care (this hospital has been horrible, except for nursing, which has been amazing. ) I am trying to focus on just being present with my mom given the seriousness of what is going on, but it is just me and her and I'm sad, scared, and tired.
She got herceptin/Perjeta on Christmas Eve Eve and we are being told that it may take up to a week to see if the cancer responds. In the meantime she is dealing with all manner of symptoms, from barely able to eat because her liver is so big it's causing all the GI issues, to edema, to weakness (from cancer? treatment? who knows,) to a potential UTI and/or pneumonia (yay long hospital stays.)
Discharge is looming on the horizon, and there is likely going to be a plan to go to a SNF or rehab, but that may only be for a week or so. I need to get the house and myself prepped to have her return home in more or less this current state. I am luckily WFH and can work part time to tend to her needs. But I'm also *already* exhausted helping her in the hospital, where there is all manner of help. I'm not trained to help people be stable on their feet, and I know she is going to have a hard time with me helping her do her toileting. How do I do this on my own??
(And yes for all intents and purposes, I am tackling this alone. My mom doesn't want anyone at all to know she has cancer. I have no siblings or other family. I have incredible friends who live far away who have been checking in on me but I'm pretty alone in this.)
I am looking for advice or recs for resources from those who have experience with this. Did you hire a home health nurse? Did insurance provide any provision for this? Did you find certain tools or gadgets useful? (for example I read that baby monitors are great for situations like this, which makes a ton of sense)
Things we have in place
- referral to outpatient palliative, who will be able to come to the home
- she's plugged into PT/OT inpatient, and I'm hoping they recommend home PT/OT
- she did estate planning a while ago, and I am her medical and financial POA. We are having ongoing discussions about her wishes wrt treatment when she is open to it (unfortunately we also have in place an oncologist that might have given her some false hope...)
That's...kind of it. I'm also dealing with a TON of emotions ranging from heartbreak to lots of guilt. I just want my mom to get better but if that's not going to happen, I just want to ease her burden and make her as comfortable as possible. Any insight would be much appreciated.
Background:
So this is me. At the beginning of November, my mom found a breast lump. At the beginning of December, I was staring down the prospect of caregiving for a relatively independent (in terms of mobility, ADLs, etc.) person with her2+ breast cancer that would require a year of treatment, and was trying to sort out how to not lose my mind as I adjusted to this new reality. As I was trying to process emotions, hopes, fears, cultural pressures, etc., my mom ended up becoming severely ill and was admitted to the hospital for, essentially, liver failure from metastatic breast cancer. In the last 10 (I think? it's all a blur.) days, she has become increasingly ill and has lost a lot of strength and mobility. At this point she is incredibly fragile, barely getting out of bed, has been having issues with continence (more as a side effect to meds than anything,) and I'm dealing with the prospect of losing her on the order of a few months if the Hail Mary immunotherapy treatment they tried doesn't work.
I am struggling and exhausted. I have spent most of my time during this admission advocating for my mom to get proper care (this hospital has been horrible, except for nursing, which has been amazing. ) I am trying to focus on just being present with my mom given the seriousness of what is going on, but it is just me and her and I'm sad, scared, and tired.
She got herceptin/Perjeta on Christmas Eve Eve and we are being told that it may take up to a week to see if the cancer responds. In the meantime she is dealing with all manner of symptoms, from barely able to eat because her liver is so big it's causing all the GI issues, to edema, to weakness (from cancer? treatment? who knows,) to a potential UTI and/or pneumonia (yay long hospital stays.)
Discharge is looming on the horizon, and there is likely going to be a plan to go to a SNF or rehab, but that may only be for a week or so. I need to get the house and myself prepped to have her return home in more or less this current state. I am luckily WFH and can work part time to tend to her needs. But I'm also *already* exhausted helping her in the hospital, where there is all manner of help. I'm not trained to help people be stable on their feet, and I know she is going to have a hard time with me helping her do her toileting. How do I do this on my own??
(And yes for all intents and purposes, I am tackling this alone. My mom doesn't want anyone at all to know she has cancer. I have no siblings or other family. I have incredible friends who live far away who have been checking in on me but I'm pretty alone in this.)
I am looking for advice or recs for resources from those who have experience with this. Did you hire a home health nurse? Did insurance provide any provision for this? Did you find certain tools or gadgets useful? (for example I read that baby monitors are great for situations like this, which makes a ton of sense)
Things we have in place
- referral to outpatient palliative, who will be able to come to the home
- she's plugged into PT/OT inpatient, and I'm hoping they recommend home PT/OT
- she did estate planning a while ago, and I am her medical and financial POA. We are having ongoing discussions about her wishes wrt treatment when she is open to it (unfortunately we also have in place an oncologist that might have given her some false hope...)
That's...kind of it. I'm also dealing with a TON of emotions ranging from heartbreak to lots of guilt. I just want my mom to get better but if that's not going to happen, I just want to ease her burden and make her as comfortable as possible. Any insight would be much appreciated.
What you're describing sounds very, very hard, and I'm sorry you're going through this. In my personal experience, the time when you get to "she can't toilet on her own" + "I am doing this myself" is really where it gets totally unsustainable. A person who can't hold up their own body weight becomes incredibly heavy, and you will not be able to safely get her to a toilet chair and back to her bed unless you are massively strong (which, if you are, I think you would have mentioned). And that will need to happen multiple times per day.
I would lean hard on the social worker, and explore every option that involves your mom not coming home any time soon, if at all.
I would also google "eldercare advisor" in your town to see if you can hire someone to help you sort out options. We did this when my mother-in-law was in the last couple years of her life, and it was an absolute godsend. Our advisor may have charged several hundred dollars but ended up saving us probably tens of thousands, because she knew exactly how the system worked, and how to extract every possible resource from the city, state, federal govt, etc.
Lastly, if there are any possible people in your support system who could be helping, now is the time to break your mom's cone of silence. You need all the help you can get.
posted by BlahLaLa at 10:44 PM on December 28, 2022 [14 favorites]
I would lean hard on the social worker, and explore every option that involves your mom not coming home any time soon, if at all.
I would also google "eldercare advisor" in your town to see if you can hire someone to help you sort out options. We did this when my mother-in-law was in the last couple years of her life, and it was an absolute godsend. Our advisor may have charged several hundred dollars but ended up saving us probably tens of thousands, because she knew exactly how the system worked, and how to extract every possible resource from the city, state, federal govt, etc.
Lastly, if there are any possible people in your support system who could be helping, now is the time to break your mom's cone of silence. You need all the help you can get.
posted by BlahLaLa at 10:44 PM on December 28, 2022 [14 favorites]
Brutal. Doing the triage work and the emotional processing simultaneously is brain-breaking stuff.
Triage: your hospital case manager is your friend. Advocate for the SNF / rehab and then, when she is at the SNF, work through all the symptomatic stuff. Continence, pneumonia, edema,.etc. they should not release your mom until she is well and truly stable. They say a week for insurance reasons but my dad was in there a month, which was basically a godsend. Talk to the case manager about this, and also about insurance (our was fully covered, having heard horror stories I was terrified to go into debt but that was not at all the case).
On release from the SNF the team there should set up some outpatient home visits including an OT who can help you make a plan for toileting stuff, in and out of bed mobility. If they don't, I would advocate for this.
I would ABSOLUTELY hire someone to help with showering and other basic functions. I found these services to be more financially reasonable than I expected. Some have a 4 hour minimum per visit which is kind of annoying.
And, yeah, take care of yourself. Therapy, nice food, enough sleep, texting friends, whatever you can manage. What you are doing is very, very, very hard.
posted by athirstforsalt at 10:53 PM on December 28, 2022 [4 favorites]
Triage: your hospital case manager is your friend. Advocate for the SNF / rehab and then, when she is at the SNF, work through all the symptomatic stuff. Continence, pneumonia, edema,.etc. they should not release your mom until she is well and truly stable. They say a week for insurance reasons but my dad was in there a month, which was basically a godsend. Talk to the case manager about this, and also about insurance (our was fully covered, having heard horror stories I was terrified to go into debt but that was not at all the case).
On release from the SNF the team there should set up some outpatient home visits including an OT who can help you make a plan for toileting stuff, in and out of bed mobility. If they don't, I would advocate for this.
I would ABSOLUTELY hire someone to help with showering and other basic functions. I found these services to be more financially reasonable than I expected. Some have a 4 hour minimum per visit which is kind of annoying.
And, yeah, take care of yourself. Therapy, nice food, enough sleep, texting friends, whatever you can manage. What you are doing is very, very, very hard.
posted by athirstforsalt at 10:53 PM on December 28, 2022 [4 favorites]
I helped my parents this year in a more limited way while my dad was dying and I have to warn you that working part time while you are caregiving may not be possible. I traveled intermittently to see my folks and I brought my work computer every time, but I only managed to log any actual work on days I did not go visiting. There was not time or space. And that was a situation in which my dad had hired help with toileting and all I was doing (“all”) was providing emotional support and chasing down paperwork. What you have been asked to do — what you are expecting of yourself — sounds literally impossible to me.
Are you eligible for family medical leave in your jurisdiction? (In the US this would be FMLA and state equivalents; I don’t want to assume where you are.) Do you have savings to support yourself through a few months with no income?
posted by eirias at 11:36 PM on December 28, 2022 [8 favorites]
Are you eligible for family medical leave in your jurisdiction? (In the US this would be FMLA and state equivalents; I don’t want to assume where you are.) Do you have savings to support yourself through a few months with no income?
posted by eirias at 11:36 PM on December 28, 2022 [8 favorites]
I am so terribly sorry. It's understandable you're protective of your mom and her privacy. If disclosing the cancer isn't an option, is there any culturally-acceptable condition that could be claimed to gain support (even if it's just errand-running and meal deliveries) from her community? This is too much for any one person.
posted by Iris Gambol at 12:12 AM on December 29, 2022 [4 favorites]
posted by Iris Gambol at 12:12 AM on December 29, 2022 [4 favorites]
It sounds like you are handling this like a pro, especially given the sudden and unexpected shift. I don’t have any specific suggestions; I just want to send you love and care because you deserve it too. ❤️
posted by smorgasbord at 3:15 AM on December 29, 2022 [7 favorites]
posted by smorgasbord at 3:15 AM on December 29, 2022 [7 favorites]
Hospice can be helpful for her and you, if she qualifies.
posted by tmdonahue at 5:06 AM on December 29, 2022
posted by tmdonahue at 5:06 AM on December 29, 2022
Hospice will help but the routine caregiving every day is not part of what they provide. Either hiring private pay folks or having her be at a SNF will be highly desirable if financially feasible. And if she's that sick it would be good to tell people. You need the support and others who care for her would like to be able to help and potentially to say goodbye. I know you said she's determined to not tell people but it sounds like this is no longer a get through illness in secret situation.
When my father was dying in the spring he was already living in a memory care setting and having that staff support was enormous, particularly in terms of toileting, bathing and overnight care. And it's extremely hard to be both the person orchestrating the care and providing the bulk of it. Take care of yourself - this stuff is so hard emotionally, physically and intellectually since most of us are not experts in navigating any of it. I agree with all the suggestions above about using the hospital's social worker and discharge manager. Sometimes there's a lag between a referral to those folks and getting services in place. If you can reach out to them before your mother is released it will help on that front.
posted by leslies at 5:38 AM on December 29, 2022
When my father was dying in the spring he was already living in a memory care setting and having that staff support was enormous, particularly in terms of toileting, bathing and overnight care. And it's extremely hard to be both the person orchestrating the care and providing the bulk of it. Take care of yourself - this stuff is so hard emotionally, physically and intellectually since most of us are not experts in navigating any of it. I agree with all the suggestions above about using the hospital's social worker and discharge manager. Sometimes there's a lag between a referral to those folks and getting services in place. If you can reach out to them before your mother is released it will help on that front.
posted by leslies at 5:38 AM on December 29, 2022
It's all contingent upon her plan (if she will try to fight the cancer further, what her supplemental Medicare insurance is) is. Someone mentioned an elder care advisor -- yes, look up your local area agency on aging and contact the ombudsman. If you're tired now, it will indeed be brain-breaking to manage any of your mom's care for anything longer than a few days once she's discharged from either a hospital or SNF. the goal of the SNF is eventual discharge just to keep that in the back of your mind. Hospice care, either in the SNF or at her home, will provide occasional bed baths (2x a week for my dad) but that will not be enough maintenance at all, especially if someone is bedbound. If you're mom ends up wearing briefs at home, have the hospice folks teach you how to turn and move people in bed - it's quite challenging for one person, I don't know how some of those tiny nurses do it alone. Try to find someone to come at night if you can, either covered by her insurance or paid under the table - it's expensive even for not pricey ones! I refused to pay anyone less than $17 an hour for that position, and only did that low because the area where my dad lived was so economically depressed it was a decent wage there, but our best nighttime assistant we paid $20/hour. Try to keep a log of medications, dosages, and when the occurred, if you end up helping with that-- this saved our sanity. A humidifier would have been good for my dad (and us) as he was dying but I didn't think of that until afterwards. Keep your own stimulants/depressants on hand-- coffee, diet coke, antihistamines, melatonin, whatever you need to get through the day. Don't expect people who say pretty things to actually pull through for you. One of my greatest disappointments was the many people who said platitudes about helping but when I tapped them for help mysteriously disappeared. Likewise, know the angels who are in your corner- and don't be afraid to ask them for help. At some point for you if you're anything like me, you'll feel something like a spring coil up inside of you and that will be all of the unsaid stuff that needs expression - pay attention to this force of coiled energy and honor it if you can. Take care of yourself. Make people do their jobs. Don't take on more than you can reasonably handle. Honor yourself as well, if not more, than your mom. Keep asking us here questions. Big hugs , so sorry you're going through this.
posted by erattacorrige at 6:16 AM on December 29, 2022 [3 favorites]
posted by erattacorrige at 6:16 AM on December 29, 2022 [3 favorites]
Talk to hospice ASAP and ask for a hospital bed to be moved in to her home along with a bedside potty. Hospital bed will help tremendously in getting her in and out of bed and keeping her from developing bedsores. Also they sell incontinence pads you can lay on, way better than adult diapers. Also ask hospice about IV hydration for her UTI.
posted by Bottlecap at 7:21 AM on December 29, 2022 [3 favorites]
posted by Bottlecap at 7:21 AM on December 29, 2022 [3 favorites]
One of the hardest things I had to do, with first caring for my dying mother and then caring for my dying spouse, was to recognize when I was unable to completely honor their wishes. You say "My mom doesn't want anyone at all to know she has cancer," but that is really unfair to you. Yes, I know she's dying and you want to do the best by her, but asking you to care for her in secrecy is probably not possible and she can't ask that of you. I had to tell my mother over and over again that I couldn't do things she really wanted only me to do, or I would have had to quit my job and neglect my child and spouse. I had to take my husband into the hospice clinic for pain management when I had promised him he would die at home. The hospice nurse talked me down from that particular promise. My father who has been on hospice for two years insists he is fine at home and refuses to go into nursing care, though my sister can no longer care for him on her own. (She has gone on a vacation in the hopes that hospice will call in Adult Protective Care, which is a bit too far in the other direction, in my opinion). The demands of the dying are sometimes unjust and can't be met completely, is all I'm saying.
posted by Peach at 7:50 AM on December 29, 2022 [19 favorites]
posted by Peach at 7:50 AM on December 29, 2022 [19 favorites]
It's been mentioned before but it is worth saying again, caregiving a very ill person is not a one person job. It is incredibly hard and demanding work, physically, and emotionally and there are no breaks. None. Bed bound adults require so much assistance. So much. There is physical aspects of turning, the is cleaning, there is bathing and other hygiene needs, food, drinks, clothes, medications and on and on. There is just day to day organization of medical care, and on top of that meeting your own needs. If someone requires 24 hour care it means you are not suppose to ever leave them alone. Not for work, not for coffee, not for food. Most people who are caregiving alone cannot manage this. Most people who are full time caregivers do not have other jobs. Also because of care needs you will be getting significantly less sleep and the sleep is likely to be interrupted.
The people who are successful at having family at home with high careneeds have paid and unpaid supports, and the more the better.
At discharge from SAR/SNF I think it's important you articulate what pt/ot goals you need for her to achieve for a safe discharge. Do you need her to be able to walk to the bathroom, or transfer herself to a bedside commode? What about feeding herself, clothe herself? Being able to follow instructions like roll on her side, or assist with transfers into a wheelchair? Articulate what you can and can't handle is really important. It also helps your providers articulate what their expectations for care are and what is realistically possible.
Seconding the conversation that it is time to loop in people, and a tough conversation to have with your family member but you need to have some sort of help.
This is really hard. Loop in your hospital social worker for an explanation of local benefits, and what your insurance can and wont provide. Many low Iow income adults may be eligible for home based community services which are people who can complete unskilled tasks (like sweeping), and simply be there , which may be an option for you.
Take care of yourself. If nothing else please loop in a close friend of yours and simply don't tell your mom. It's okay that you need support. This is a very hard time in both of your lives.
posted by AlexiaSky at 10:01 AM on December 29, 2022 [4 favorites]
The people who are successful at having family at home with high careneeds have paid and unpaid supports, and the more the better.
At discharge from SAR/SNF I think it's important you articulate what pt/ot goals you need for her to achieve for a safe discharge. Do you need her to be able to walk to the bathroom, or transfer herself to a bedside commode? What about feeding herself, clothe herself? Being able to follow instructions like roll on her side, or assist with transfers into a wheelchair? Articulate what you can and can't handle is really important. It also helps your providers articulate what their expectations for care are and what is realistically possible.
Seconding the conversation that it is time to loop in people, and a tough conversation to have with your family member but you need to have some sort of help.
This is really hard. Loop in your hospital social worker for an explanation of local benefits, and what your insurance can and wont provide. Many low Iow income adults may be eligible for home based community services which are people who can complete unskilled tasks (like sweeping), and simply be there , which may be an option for you.
Take care of yourself. If nothing else please loop in a close friend of yours and simply don't tell your mom. It's okay that you need support. This is a very hard time in both of your lives.
posted by AlexiaSky at 10:01 AM on December 29, 2022 [4 favorites]
That all sounds immensely stressful, I am sorry. A few thoughts- if you have an employee assistance program through your job there may be some resources available to help you or coordinate care for your mom.Palliative care folks should be helpful with some of the practical and emotional needs as you are navigating her care.
I would expect her mobility to change quickly for the worse if her cancer is advancing.You may be able to rent a sling/Hoyer lift to assist with getting her out of bed if she is not able to walk at some point. If she is at that point and you are by yourself, you may be better off to have her in a facility for your own physical and mental health. It's not where anyone wants to be, but they are set up with equipment and caregivers that can be difficult to arrange at home.
Friends from far away may be able to help with arranging grocery or supply deliveries or researching different levels of care.
Definitely lean heavily on your care managers or social workers and PT/OT services, they are usually aware of local resources and have experience in sorting out these type of situations.Ask lots of questions and let them know about the particulars of your situation. They are there to help.
Take as good care of yourself as you can, stay hydrated, eat regularly even if it's junk- fuel is fuel. Rest when you can.
posted by bookrach at 12:47 PM on December 29, 2022
I would expect her mobility to change quickly for the worse if her cancer is advancing.You may be able to rent a sling/Hoyer lift to assist with getting her out of bed if she is not able to walk at some point. If she is at that point and you are by yourself, you may be better off to have her in a facility for your own physical and mental health. It's not where anyone wants to be, but they are set up with equipment and caregivers that can be difficult to arrange at home.
Friends from far away may be able to help with arranging grocery or supply deliveries or researching different levels of care.
Definitely lean heavily on your care managers or social workers and PT/OT services, they are usually aware of local resources and have experience in sorting out these type of situations.Ask lots of questions and let them know about the particulars of your situation. They are there to help.
Take as good care of yourself as you can, stay hydrated, eat regularly even if it's junk- fuel is fuel. Rest when you can.
posted by bookrach at 12:47 PM on December 29, 2022
I am so sorry this is happening to your mom, and to you.
One of the most painful but important things to be able to recognize is when someone's stated goals conflict with your ability to provide adequate basic care. So bringing her home if she's unable to even get to a bedside commode is not going to work, because you will be making her worse and not better. And there will be pressure--from her, from the rehab, and from your own internalized sense of being a good daughter, to bring her home and assume responsibility for all of this yourself. It feels AWFUL to say "I can't take care of you at home" to someone who is begging to just go home. Be realistic with yourself and don't be afraid to push the social workers/care managers at the hospital if needed. Phrases like "this is not a safe discharge plan" and "I am not able to assist with basic activities of daily living [dressing, eating, toileting, bathing, transferring] in a safe way" may be your friend).
If she does improve enough to come home and be safe (with a lot of assistance), home health will help. Depending on her insurance, she probably has some home care benefits. You should become very familiar with what those are, and what resets "per episode" and what benefits are cumulative. She will probably be eligible for home nursing, possibly an aide, and home PT/OT.
If she does come home, baby monitors are great. Also learn from the nurses how to make up a bed as a series of layers--waterproof layer, protective pad, sheet, protective pad, sheet, etc. If she has an accident, off come the top layers and you don't have to remake the whole thing.
Depending on her assets, you may want to look into planning for Medicaid benefits earlier rather than later. There are some protections for the home for caregiving children residing with the person, for example, so it might be a good idea to meet with an expert on this so you are familiar with requirements.
If you are eligible for FMLA and can afford to take unpaid leave, you are eligible to take it as a caregiver, either continuously or in chunks. Your mom's doctors would be the ones to complete the forms for you.
posted by The Elusive Architeuthis at 4:44 PM on December 29, 2022 [2 favorites]
One of the most painful but important things to be able to recognize is when someone's stated goals conflict with your ability to provide adequate basic care. So bringing her home if she's unable to even get to a bedside commode is not going to work, because you will be making her worse and not better. And there will be pressure--from her, from the rehab, and from your own internalized sense of being a good daughter, to bring her home and assume responsibility for all of this yourself. It feels AWFUL to say "I can't take care of you at home" to someone who is begging to just go home. Be realistic with yourself and don't be afraid to push the social workers/care managers at the hospital if needed. Phrases like "this is not a safe discharge plan" and "I am not able to assist with basic activities of daily living [dressing, eating, toileting, bathing, transferring] in a safe way" may be your friend).
If she does improve enough to come home and be safe (with a lot of assistance), home health will help. Depending on her insurance, she probably has some home care benefits. You should become very familiar with what those are, and what resets "per episode" and what benefits are cumulative. She will probably be eligible for home nursing, possibly an aide, and home PT/OT.
If she does come home, baby monitors are great. Also learn from the nurses how to make up a bed as a series of layers--waterproof layer, protective pad, sheet, protective pad, sheet, etc. If she has an accident, off come the top layers and you don't have to remake the whole thing.
Depending on her assets, you may want to look into planning for Medicaid benefits earlier rather than later. There are some protections for the home for caregiving children residing with the person, for example, so it might be a good idea to meet with an expert on this so you are familiar with requirements.
If you are eligible for FMLA and can afford to take unpaid leave, you are eligible to take it as a caregiver, either continuously or in chunks. Your mom's doctors would be the ones to complete the forms for you.
posted by The Elusive Architeuthis at 4:44 PM on December 29, 2022 [2 favorites]
If you are in the USA, depending on your state, you may be eligible for PFML (Paid Family Medical Leave). 11 states—California, Colorado, Connecticut, Delaware, Massachusetts, Maryland, New Jersey, New York, Oregon, Rhode Island, and Washington—and the District of Columbia currently offer paid family and medical leave. Take it. Seriously. You will need it. You cannot work around this sort of thing. I've tried to and it's been impossible.
posted by rednikki at 6:39 PM on December 29, 2022 [1 favorite]
posted by rednikki at 6:39 PM on December 29, 2022 [1 favorite]
There's a lot of great advice above. Make sure you're ready to take her at discharge and do not be pressured into agreeing to early discharge before you have all the needed medical equipment at home for her and a care plan that includes others. You will not be able to care for her at home by yourself. It's not possible or safe for either of you. Work with the social services and hospital staff to get things ready and do not agree to taking her on discharge until that's in-place. Many facilities will pressure you to take her before you're ready.
Also be ready to make the hospice decision. Discuss with her doctors about when her condition will qualify for hospice and when you and your mom feel like you're ready for it. Hospice requires that the patient no longer be in active treatment for the disease itself but still allows for extensive supportive medical care to make your mom as comfortable as possible. Hospice services can be fantastic and have a different set of supports that will become available to you. I regret not entering hospice earlier for my ill parent. My parent qualified for hospice care far before we decided to start it and it was so very helpful and made their care and passing much more comfortable and humane.
posted by quince at 2:56 PM on December 30, 2022
Also be ready to make the hospice decision. Discuss with her doctors about when her condition will qualify for hospice and when you and your mom feel like you're ready for it. Hospice requires that the patient no longer be in active treatment for the disease itself but still allows for extensive supportive medical care to make your mom as comfortable as possible. Hospice services can be fantastic and have a different set of supports that will become available to you. I regret not entering hospice earlier for my ill parent. My parent qualified for hospice care far before we decided to start it and it was so very helpful and made their care and passing much more comfortable and humane.
posted by quince at 2:56 PM on December 30, 2022
« Older What is this poster from in the background of “The... | Iphone pictures rotate in weird ways when I... Newer »
This thread is closed to new comments.
If you are willing to share your location with us there may be someone here who is familiar with local resources.
Is your mother a member of a local faith community? If so reach out to her minister, or equivalent in her faith. They can provide confidential support to her.
Be good to yourself. Remember to eat well. Get some exercise to help relieve the stress. Indulge in escapist movies, tv shows, or books; they're a good way to take a break.
posted by mareli at 8:51 PM on December 28, 2022 [1 favorite]