Sister stopped father's bloodthinners and now food and water--help!
April 7, 2023 11:01 AM Subscribe
What it says on the tin but many complicated details within.
Complicated family drama; I'll try to boil it down to the essentials.
Chinese family, parents speak little English, three children, all American-born.
Elderly father and mother live together in house father built in the 80s in Davie, near Ft. Lauderdale. Parents have for decades steadfastly refused to move in with/nearer to any of their three children, my boyfriend who lives six hours away and his two sisters, one in Michigan, and one in California.
Boyfriend has been driving down many times a year on weekends and for months at a time in the summer (he's a public school teacher) to care for his parents. Father began suffering strokes ~10 years ago and has been on blood thinners. Of late, he's been experiencing rapid decline with dementia and sundowning, but he was still walking and talking in March.
My boyfriend stepped up his visits to every other week six months or so ago. He’d spend a few days with them, shopping, running errands, fixing things around the house, taking care of the garden and the longan trees, and staying up nights with sundowning father to give his mother a break.
In mid-March, his father went into the hospital for unexplained urinary problems and underwent a couple of surgeries, one for a gastric tube because after the first surgery he became suddenly unable to swallow. My boyfriend got his mother to sign off on the gastric tube—he is his father’s secondary medical surrogate and his mother is primary medical surrogate. Initially she wasn’t in favor because she thought her husband wouldn’t want it. The hospital did the surgery because boyfriend and his mother explained that the father’s objection to the gastric tube was for if he was dying, and he was not dying at the time they did the surgery.
My boyfriend and his mother took shifts and stayed by his father’s side for the entire hospital stay and my boyfriend stayed with them for a couple of days after the hospital until a little over a week ago when his sister from California came to take a shift. Cali sister waited until my boyfriend was gone whereupon she immediately put her father in a for-profit hospice* against the wishes of her sister and brother.
My boyfriend and his Michigan sister both protested in the zoom meeting onboarding their father to hospice care that this was premature, that their father should have a chance to recover from his hospital stay and gain weight and get his strength back, but they couldn't make headway. Again, my boyfriend and his mother are the primary and secondary medical surrogates. Cali sister has no legal power herself, but she speaks English and she was there. She convinced their mother and spoke for her with the hospice people.
Cali sister persuaded their mother to take their father off bloodthinners practically the day my boyfriend left, and for days they have been vacillating back and forth about whether or not to feed him, Cali sister always voting no. Some days their mother changes her mind and they feed him, and some days she agrees with Cali sister. So he hasn’t gained much if any weight, though he is livelier than he was when he first got home.
Last night Cali sister persuaded their mother to stop both food and water.
Michigan sister and my boyfriend continue to be dead set against all this. True, their father cannot speak or swallow, but he has maintained good quality of life throughout his decline and has it now--he still recognizes people, smiles and laughs, likes to watch TV, shakes hands with the hospice people, etc. etc., examples abound. He is probably going to die soon, but at the moment he is a living person enjoying his life and his family. His decline over the past decade has been steady and inexorable and now he’s off his bloodthinners so he likely will die of stroke shortly. He does not need to starve, I would posit ever, but certainly not now, while he is still able to enjoy his life and his family. Besides: the objection to the gastric tube is moot at this point. That decision has been made. He has a gastric tube. Put. Food. In it. His death is inevitable; starvation is not. And hastening his death by starving him is the opposite of merciful.
Their mother is in an agony of grief and talking about suicide. She says that she does not want to live without her husband. She is chronically exhausted from caregiving for years, and acutely exhausted from fielding diametrically opposed petitions and howls of grief and horror from all three kids. It is cruel to make her decide this without support, and none of the kids can be expected to be optimally supportive.
My boyfriend drove back south two days ago and has been sleeping on the floor in his father's room, but he can’t stop his sister. He just called me and, to my boundless relief, reported that this morning he was able to convince his sister that at least they should restore liquids. But sister is holding firm: no nutrition beyond Gatorade.
Is there anyone he can call? Also, is there a procedure to follow to secure a better advocate for his mother? It would have to be someone who speaks Toisanese and who is not a family member currently dedicating their whole self, mind, body, and spirit, either to trying to hasten the death of her husband or to trying to delay the death of her husband. She needs someone knowledgeable who can listen to her, explain things to her without panicked screaming and crying, and advocate for her honestly without twisting her words.
*She appears to have chosen the hospice at random, possibly because it was the first one listed in the phonebook. It has abysmal on-line reviews, though so far my boyfriend says the people associated with it have behaved decently enough and appear to be caring for his father appropriately.
Complicated family drama; I'll try to boil it down to the essentials.
Chinese family, parents speak little English, three children, all American-born.
Elderly father and mother live together in house father built in the 80s in Davie, near Ft. Lauderdale. Parents have for decades steadfastly refused to move in with/nearer to any of their three children, my boyfriend who lives six hours away and his two sisters, one in Michigan, and one in California.
Boyfriend has been driving down many times a year on weekends and for months at a time in the summer (he's a public school teacher) to care for his parents. Father began suffering strokes ~10 years ago and has been on blood thinners. Of late, he's been experiencing rapid decline with dementia and sundowning, but he was still walking and talking in March.
My boyfriend stepped up his visits to every other week six months or so ago. He’d spend a few days with them, shopping, running errands, fixing things around the house, taking care of the garden and the longan trees, and staying up nights with sundowning father to give his mother a break.
In mid-March, his father went into the hospital for unexplained urinary problems and underwent a couple of surgeries, one for a gastric tube because after the first surgery he became suddenly unable to swallow. My boyfriend got his mother to sign off on the gastric tube—he is his father’s secondary medical surrogate and his mother is primary medical surrogate. Initially she wasn’t in favor because she thought her husband wouldn’t want it. The hospital did the surgery because boyfriend and his mother explained that the father’s objection to the gastric tube was for if he was dying, and he was not dying at the time they did the surgery.
My boyfriend and his mother took shifts and stayed by his father’s side for the entire hospital stay and my boyfriend stayed with them for a couple of days after the hospital until a little over a week ago when his sister from California came to take a shift. Cali sister waited until my boyfriend was gone whereupon she immediately put her father in a for-profit hospice* against the wishes of her sister and brother.
My boyfriend and his Michigan sister both protested in the zoom meeting onboarding their father to hospice care that this was premature, that their father should have a chance to recover from his hospital stay and gain weight and get his strength back, but they couldn't make headway. Again, my boyfriend and his mother are the primary and secondary medical surrogates. Cali sister has no legal power herself, but she speaks English and she was there. She convinced their mother and spoke for her with the hospice people.
Cali sister persuaded their mother to take their father off bloodthinners practically the day my boyfriend left, and for days they have been vacillating back and forth about whether or not to feed him, Cali sister always voting no. Some days their mother changes her mind and they feed him, and some days she agrees with Cali sister. So he hasn’t gained much if any weight, though he is livelier than he was when he first got home.
Last night Cali sister persuaded their mother to stop both food and water.
Michigan sister and my boyfriend continue to be dead set against all this. True, their father cannot speak or swallow, but he has maintained good quality of life throughout his decline and has it now--he still recognizes people, smiles and laughs, likes to watch TV, shakes hands with the hospice people, etc. etc., examples abound. He is probably going to die soon, but at the moment he is a living person enjoying his life and his family. His decline over the past decade has been steady and inexorable and now he’s off his bloodthinners so he likely will die of stroke shortly. He does not need to starve, I would posit ever, but certainly not now, while he is still able to enjoy his life and his family. Besides: the objection to the gastric tube is moot at this point. That decision has been made. He has a gastric tube. Put. Food. In it. His death is inevitable; starvation is not. And hastening his death by starving him is the opposite of merciful.
Their mother is in an agony of grief and talking about suicide. She says that she does not want to live without her husband. She is chronically exhausted from caregiving for years, and acutely exhausted from fielding diametrically opposed petitions and howls of grief and horror from all three kids. It is cruel to make her decide this without support, and none of the kids can be expected to be optimally supportive.
My boyfriend drove back south two days ago and has been sleeping on the floor in his father's room, but he can’t stop his sister. He just called me and, to my boundless relief, reported that this morning he was able to convince his sister that at least they should restore liquids. But sister is holding firm: no nutrition beyond Gatorade.
Is there anyone he can call? Also, is there a procedure to follow to secure a better advocate for his mother? It would have to be someone who speaks Toisanese and who is not a family member currently dedicating their whole self, mind, body, and spirit, either to trying to hasten the death of her husband or to trying to delay the death of her husband. She needs someone knowledgeable who can listen to her, explain things to her without panicked screaming and crying, and advocate for her honestly without twisting her words.
*She appears to have chosen the hospice at random, possibly because it was the first one listed in the phonebook. It has abysmal on-line reviews, though so far my boyfriend says the people associated with it have behaved decently enough and appear to be caring for his father appropriately.
Is it not possible to discern the father's wishes directly? I am quite surprised that they would allow the stopping of food and water for someone who is as conscious as you describe.
Either way, your boyfriend needs to call a family lawyer (ideally one with the appropriate language skills) yesterday. If it were me, and I were genuinely convinced that my father did not wish to stop nutrition, I would be telling the hospice right now that if they don't feed him, I would be suing the hell out of them when he dies. That has no legal force, but has a decent chance of intimidating them enough to arrange nutrition until he has a chance to consult a lawyer. But--really--it is very important that your boyfriend be very honest with himself about where his dad actually is. Obviously he trusted your boyfriend to make decisions for him, but he also chose his wife as the primary surrogate, so your boyfriend should only go against her wishes if he is confident both that his wife is simply overwhelmed and incapable and that his father is aware enough that further care is meaningful.
posted by praemunire at 11:19 AM on April 7, 2023 [6 favorites]
Either way, your boyfriend needs to call a family lawyer (ideally one with the appropriate language skills) yesterday. If it were me, and I were genuinely convinced that my father did not wish to stop nutrition, I would be telling the hospice right now that if they don't feed him, I would be suing the hell out of them when he dies. That has no legal force, but has a decent chance of intimidating them enough to arrange nutrition until he has a chance to consult a lawyer. But--really--it is very important that your boyfriend be very honest with himself about where his dad actually is. Obviously he trusted your boyfriend to make decisions for him, but he also chose his wife as the primary surrogate, so your boyfriend should only go against her wishes if he is confident both that his wife is simply overwhelmed and incapable and that his father is aware enough that further care is meaningful.
posted by praemunire at 11:19 AM on April 7, 2023 [6 favorites]
You say the father is in rapid decline from dementia and strokes. It sounds like he may be medically unable to make decisions for himself. You say his wife is exhausted from being a caregiver.
What does he want, and what does his wife want?
posted by zippy at 11:20 AM on April 7, 2023 [7 favorites]
What does he want, and what does his wife want?
posted by zippy at 11:20 AM on April 7, 2023 [7 favorites]
I have seen families torn apart by dementia cases, it is a terrible disease and quality of life is so hard to measure. Most men that I know (not from the same community) are very firm that they would prefer less medical intervention if they end up near the end of the road with dementia. They do not want to be a burden, they do not want to be unable to care for themselves, and they would see that situation as similar to prison.
The patient's wife should know him well enough to know what he wants. I had a family member choose to stop accepting food and water and I have had a family member that chose assisted suicide. Both were ready to go and wanted to have some last control over a wildly flailing body. Even with intensive care it would have been a matter of months, full of physical and emotional pain. Unfortunately it sounds like your boyfriend's father's diagnosis is terminal so increasing weight will not bring him back.
As for who can help, often this type of aid comes from a religious community. Is there a religious or cultural organization with the language skills to counsel his mother?
posted by Narrow Harbor at 11:35 AM on April 7, 2023 [2 favorites]
The patient's wife should know him well enough to know what he wants. I had a family member choose to stop accepting food and water and I have had a family member that chose assisted suicide. Both were ready to go and wanted to have some last control over a wildly flailing body. Even with intensive care it would have been a matter of months, full of physical and emotional pain. Unfortunately it sounds like your boyfriend's father's diagnosis is terminal so increasing weight will not bring him back.
As for who can help, often this type of aid comes from a religious community. Is there a religious or cultural organization with the language skills to counsel his mother?
posted by Narrow Harbor at 11:35 AM on April 7, 2023 [2 favorites]
Through the hospice, the father should have a social worker/case manager and they should be able to arrange a sufficient translator even via phone. With that person, if the father is as cognizant, they should discuss with the father what his wishes are. And/Or, with the mother in the room as well. Without any of the siblings. They can go through the paperwork which I recall is very detailed on end of life care.
The hospice program should also have a religious/spiritual person who can assist during these sessions as well.
From my personal example, my Chinese older male relative had swallow troubles as well and failed multiple swallow tests at the hospital. He could’ve had a feeding tube but chose not to take the invasive surgery. His children did not agree but I supported him and helped him navigate with English translation with the doctors. He lived about 6 months after with thickened liquid food at home under hospice. His children still think if he had gotten the tube he would have lived longer. But I was glad to be able to support his end of life wishes.
posted by inevitability at 11:42 AM on April 7, 2023 [11 favorites]
The hospice program should also have a religious/spiritual person who can assist during these sessions as well.
From my personal example, my Chinese older male relative had swallow troubles as well and failed multiple swallow tests at the hospital. He could’ve had a feeding tube but chose not to take the invasive surgery. His children did not agree but I supported him and helped him navigate with English translation with the doctors. He lived about 6 months after with thickened liquid food at home under hospice. His children still think if he had gotten the tube he would have lived longer. But I was glad to be able to support his end of life wishes.
posted by inevitability at 11:42 AM on April 7, 2023 [11 favorites]
I'm just going to take a small side note on food and hunger at end of life: generally, comfort measure protocols do not use the feeding tube. We let folks take food and liquid at their own pace, by mouth, because that's the way humans enjoy food. Even with the risk of having a little go down the wrong way. And at the end of life hunger seems to fade. And we stop most medications.
But as for the rest... Even if it's a shit hospice it should have a social worker and a contract with at least telephone interpreter services.
I am not familiar with Florida healthcare law (and frankly I have never been impressed with it, from my patients that travel between) but 'Elder Law' is the term to look for. Agree that a cultural or religious center they match with would probably have the best local resources. At the very least, your boyfriend, as second in line, should find someone experienced in Elder or Family law, and have them review the legality of the initial change to hospice - and crudely, because that becomes a medical billing issue and if someone who signed for it is not the legal representative, it becomes a whole new problem legally.
(You can go off hospice, don't let the for profit company tell you otherwise, but many people have a better quality of life without ongoing interventions. It changes Medicare billing to be on or off though. There are other variations, like 'no hospitalization' orders, that can be put in place.)
posted by cobaltnine at 11:46 AM on April 7, 2023 [14 favorites]
But as for the rest... Even if it's a shit hospice it should have a social worker and a contract with at least telephone interpreter services.
I am not familiar with Florida healthcare law (and frankly I have never been impressed with it, from my patients that travel between) but 'Elder Law' is the term to look for. Agree that a cultural or religious center they match with would probably have the best local resources. At the very least, your boyfriend, as second in line, should find someone experienced in Elder or Family law, and have them review the legality of the initial change to hospice - and crudely, because that becomes a medical billing issue and if someone who signed for it is not the legal representative, it becomes a whole new problem legally.
(You can go off hospice, don't let the for profit company tell you otherwise, but many people have a better quality of life without ongoing interventions. It changes Medicare billing to be on or off though. There are other variations, like 'no hospitalization' orders, that can be put in place.)
posted by cobaltnine at 11:46 AM on April 7, 2023 [14 favorites]
praemunire--it's not the hospice that is deciding whether or not to feed him, it is the family, and more specifically the medical surrogate (his wife) who has the power to make that decision since he cannot make his own.
Sigh. This is a nightmare scenario and one that is very, very common. Make your end of life wishes known, folks.
There are reasonable arguments to be made on both sides here. Blood thinners are not always appropriate in someone who has a life expectancy of less than six months and sometimes have to be monitored closely. In someone who is not able to swallow or enjoy food and has a terminal prognosis, it's not always appropriate to have a feeding tube, especially if the patient isn't indicating that they are hungry or if they are picking at or annoyed by the tube. It all depends on the individual's goals of care, which of course are not really clear here, except that at one point he did indicate that he wouldn't want one, but maybe under different circumstances.
I think the avenue that has the best likelihood of getting everyone to agree on a plan is for someone to arrange a goals-of-care meeting with the palliative physician from the hospice agency, with a Toisanese translator certified to do medical translation (the hospice agency is required to provide this, but probably will use a phone translator) so that they can make some plans. Your boyfriend and the sisters will need to understand that probably no one will get what they think is optimal here. The point of that meeting will be to outline what interventions they plan to take and which to avoid, focusing on the interventions that will be most likely to increase the dad's quality of life.
posted by The Elusive Architeuthis at 11:49 AM on April 7, 2023 [14 favorites]
Sigh. This is a nightmare scenario and one that is very, very common. Make your end of life wishes known, folks.
There are reasonable arguments to be made on both sides here. Blood thinners are not always appropriate in someone who has a life expectancy of less than six months and sometimes have to be monitored closely. In someone who is not able to swallow or enjoy food and has a terminal prognosis, it's not always appropriate to have a feeding tube, especially if the patient isn't indicating that they are hungry or if they are picking at or annoyed by the tube. It all depends on the individual's goals of care, which of course are not really clear here, except that at one point he did indicate that he wouldn't want one, but maybe under different circumstances.
I think the avenue that has the best likelihood of getting everyone to agree on a plan is for someone to arrange a goals-of-care meeting with the palliative physician from the hospice agency, with a Toisanese translator certified to do medical translation (the hospice agency is required to provide this, but probably will use a phone translator) so that they can make some plans. Your boyfriend and the sisters will need to understand that probably no one will get what they think is optimal here. The point of that meeting will be to outline what interventions they plan to take and which to avoid, focusing on the interventions that will be most likely to increase the dad's quality of life.
posted by The Elusive Architeuthis at 11:49 AM on April 7, 2023 [14 favorites]
Sending love from the primary medical decision maker for my 80 something year old Toisanese parents in Florida, one of which has dementia and just got out a three week long stay in subacture rehab after a UTI.
It sounds like the family needs to have a family conference lead by a trusted physician and with hospice. Having all the kids in the room to make sure that the information to mom is getting through fairly and not biased by a single teller. Hopefully, all the kids have better comfort in Toisanese than I do having not routinely used it since I was a kid. Inevitiability has a great point about getting a doctor and a teleinterpreter if you need one. Is mom fluent enough in another dialect? With my parents, they can both converse in Cantonese as well, and my mom's Mandarin is fine, so those could be easier routes to get an in person translator. This family conference can help you all understand how each of you hears the information from his caregivers about the prognosis and the plan.
My parents were very clear that they didn't want us to pursue ventilators, gastric tubes, and other ways that felt like machines were extending their lives. That still left us with a lot of gray area to navigate, but we try to go back to what we know of their values when making decisions.
The hardest part of all of this is all of the family comes to accepting things at different paces. I spend the most time flying down to care for my parents and I'm in a very different place in acceptance than my siblings were just a few months ago. Things recently seemed critical so we were all down there recently, and I was there with my sister and with my brother at various times, and being there together and facing it together really helped them understand where I was coming from. That's not to say that I know better that them, but I have a much better understanding of what their quality of life was like a month ago, six months ago, a year ago.
The following is some info on how to move forward if the family wants work towards recovery rather than withdrawing care.
Ask the physician if a stay in subacute rehab or skilled nursing makes sense. If costs are a major factor and he is on primary Medicare, there is a Florida assistance program for lower wealth seniors that can pay the copays. My mom was able to get daily occupational therapy and physical therapy for a few months while she got strong enough to move into memory care. When she was on a Medicare Advanage HMO, I had to call to appeal and end of services every week or so, but once we switched to primary Medicare, it was paid for without having to fight for it weekly.
If mom is exhausted from caring for him, are you able to bring in some nursing aid? Would they be open to a stay in respite care, where you can have someone stay in a memory care assisted living situation on a short term basis?
Good luck to you all. I hope peace comes soon, however that may look.
posted by advicepig at 12:00 PM on April 7, 2023 [9 favorites]
It sounds like the family needs to have a family conference lead by a trusted physician and with hospice. Having all the kids in the room to make sure that the information to mom is getting through fairly and not biased by a single teller. Hopefully, all the kids have better comfort in Toisanese than I do having not routinely used it since I was a kid. Inevitiability has a great point about getting a doctor and a teleinterpreter if you need one. Is mom fluent enough in another dialect? With my parents, they can both converse in Cantonese as well, and my mom's Mandarin is fine, so those could be easier routes to get an in person translator. This family conference can help you all understand how each of you hears the information from his caregivers about the prognosis and the plan.
My parents were very clear that they didn't want us to pursue ventilators, gastric tubes, and other ways that felt like machines were extending their lives. That still left us with a lot of gray area to navigate, but we try to go back to what we know of their values when making decisions.
The hardest part of all of this is all of the family comes to accepting things at different paces. I spend the most time flying down to care for my parents and I'm in a very different place in acceptance than my siblings were just a few months ago. Things recently seemed critical so we were all down there recently, and I was there with my sister and with my brother at various times, and being there together and facing it together really helped them understand where I was coming from. That's not to say that I know better that them, but I have a much better understanding of what their quality of life was like a month ago, six months ago, a year ago.
The following is some info on how to move forward if the family wants work towards recovery rather than withdrawing care.
Ask the physician if a stay in subacute rehab or skilled nursing makes sense. If costs are a major factor and he is on primary Medicare, there is a Florida assistance program for lower wealth seniors that can pay the copays. My mom was able to get daily occupational therapy and physical therapy for a few months while she got strong enough to move into memory care. When she was on a Medicare Advanage HMO, I had to call to appeal and end of services every week or so, but once we switched to primary Medicare, it was paid for without having to fight for it weekly.
If mom is exhausted from caring for him, are you able to bring in some nursing aid? Would they be open to a stay in respite care, where you can have someone stay in a memory care assisted living situation on a short term basis?
Good luck to you all. I hope peace comes soon, however that may look.
posted by advicepig at 12:00 PM on April 7, 2023 [9 favorites]
praemunire--it's not the hospice that is deciding whether or not to feed him, it is the family
Sorry, it wasn't clear to me whether he was in a physical facility or not.
posted by praemunire at 12:13 PM on April 7, 2023
Sorry, it wasn't clear to me whether he was in a physical facility or not.
posted by praemunire at 12:13 PM on April 7, 2023
I'm missing something here. Where does this sister comes in when it comes to medical proxy? She's not on the list.
The way I see the problem: is she really just translating for mom, or did she imposed her will on mom, i.e. convinced her it's for the best?
I don't know about a family fight, but if the sister won't budge, one may need a judge to sign a immediate injunction to stop the sister from taking over the whole thing. And one also needs an impartial translator there, preferably someone who's also a patient advocate with possible hospice experience, but it could be two separate people.
I'm in NorCal, and I may know some people who know some people in this area.
posted by kschang at 1:54 PM on April 7, 2023 [8 favorites]
The way I see the problem: is she really just translating for mom, or did she imposed her will on mom, i.e. convinced her it's for the best?
I don't know about a family fight, but if the sister won't budge, one may need a judge to sign a immediate injunction to stop the sister from taking over the whole thing. And one also needs an impartial translator there, preferably someone who's also a patient advocate with possible hospice experience, but it could be two separate people.
I'm in NorCal, and I may know some people who know some people in this area.
posted by kschang at 1:54 PM on April 7, 2023 [8 favorites]
Also you can switch hospice programs once a benefit period. See Medicare.gov.
posted by inevitability at 3:59 PM on April 7, 2023
posted by inevitability at 3:59 PM on April 7, 2023
The sister, who has no legal medical authority, is literally starving the father to death. Please call Florida Adult Protective Services immediately! They have a 24/7 hotline and can talk to him and his wife without any outside influences, and determine what their true wishes are. They will have access to translation services - there are national services available via telephone. It is possible the father and mother truly do want to withhold food and water, but until that is known for certain, the sister is pretty much attempting to murder him.
posted by MexicanYenta at 11:13 PM on April 7, 2023 [4 favorites]
posted by MexicanYenta at 11:13 PM on April 7, 2023 [4 favorites]
So sorry to hear this is happening. I found the following resources helpful and they may be good for your situation.
Compassion & Choices - end of life consultation They also have Tools to Finish Strong guides on advance planning and dementia care (somewhat like a dementia healthcare directive) to help you navigate these decisions.
Family Caregiver Alliance / Caregiver.org Resources - this may be beyond the point of where you are now, but Caregiver.org has a really good set of resources if you create a free account and walk through a questionnaire. I've received scores of documents / fact sheets that have been truly helpful, and as a result I built a workbook of various things to consider to manage my elder parents specific care needs. Here's an example It's a California based org but a lot of the info is valid regardless of what state you're in.
Chinese American Coalition for Compassionate Care - I've not used this resource yet but maybe they can be helpful
Pacific Home Care & Hospice - I've not used this resource yet but maybe they can be helpful to direct you to a local organization in FL.
Also, there's a lot of info on these sites about caregiver support. It's such a hard thing for the mother and family to go through these challenges, especially if there's conflict on what's best for the father. Hoping that these can be helpful to provide the empathy and support to the caregivers as well. I'm available to chat directly if you need support.
posted by hampanda at 6:49 PM on April 9, 2023
Compassion & Choices - end of life consultation They also have Tools to Finish Strong guides on advance planning and dementia care (somewhat like a dementia healthcare directive) to help you navigate these decisions.
Family Caregiver Alliance / Caregiver.org Resources - this may be beyond the point of where you are now, but Caregiver.org has a really good set of resources if you create a free account and walk through a questionnaire. I've received scores of documents / fact sheets that have been truly helpful, and as a result I built a workbook of various things to consider to manage my elder parents specific care needs. Here's an example It's a California based org but a lot of the info is valid regardless of what state you're in.
Chinese American Coalition for Compassionate Care - I've not used this resource yet but maybe they can be helpful
Pacific Home Care & Hospice - I've not used this resource yet but maybe they can be helpful to direct you to a local organization in FL.
Also, there's a lot of info on these sites about caregiver support. It's such a hard thing for the mother and family to go through these challenges, especially if there's conflict on what's best for the father. Hoping that these can be helpful to provide the empathy and support to the caregivers as well. I'm available to chat directly if you need support.
posted by hampanda at 6:49 PM on April 9, 2023
Oh, one more to share:
Heart of Hope Hospice - Nationwide toll-free telephone hotline 1-888-663-8585 to provide emotional support for seriously ill patients and their family caregivers. Available in Mandarin and Cantonese (not Toisanese but hopefully the parents speak one of the other dialects).
posted by hampanda at 6:54 PM on April 9, 2023
Heart of Hope Hospice - Nationwide toll-free telephone hotline 1-888-663-8585 to provide emotional support for seriously ill patients and their family caregivers. Available in Mandarin and Cantonese (not Toisanese but hopefully the parents speak one of the other dialects).
posted by hampanda at 6:54 PM on April 9, 2023
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posted by aniola at 11:06 AM on April 7, 2023 [15 favorites]