What's the right thing to do here?
April 30, 2018 6:41 AM
Scenario: a woman with mild to moderate dementia - and heart failure that's kept at bay with meds affecting cognition at therapeutic doses - is taken to a rest home when her daughter, who was her caretaker - falls ill with an aggressive cancer. The daughter dies. Medical staff at the home are strongly opposed to telling the woman. She asks about her daughter every day. Should she be told?
This is not in the anglosphere, it's in a country with more paternalistic standards of medical care (e.g. patients are sometimes not told if they have fatal illnesses).
The woman's long-term memory has been affected (does not remember that she lived in a particular town for 60 years); short-term is decent, but variable... (It may be that if told, she would forget [and if others were determined for her to "know", she might have to hear the news again :/]).
It's unclear what the specific fears of medical staff are (heart attack? Overall worsening of condition?), but they haven't wavered in their stance; presumably they have some grounding.
The daughter who died was her favourite child, and she is hugely, hugely missed. The mother senses something is wrong, and is anxious about her daughter's absence, sometimes panicked. (Every day.)
Her other children live in another country. Extended family sometimes visit, but she is mostly taken care of by staff at the nursing home. She is content, for the most part, apart from her worry about her daughter.
(The daughter died over two years ago.)
There is no not-cruel option here, it seems.
This is not in the anglosphere, it's in a country with more paternalistic standards of medical care (e.g. patients are sometimes not told if they have fatal illnesses).
The woman's long-term memory has been affected (does not remember that she lived in a particular town for 60 years); short-term is decent, but variable... (It may be that if told, she would forget [and if others were determined for her to "know", she might have to hear the news again :/]).
It's unclear what the specific fears of medical staff are (heart attack? Overall worsening of condition?), but they haven't wavered in their stance; presumably they have some grounding.
The daughter who died was her favourite child, and she is hugely, hugely missed. The mother senses something is wrong, and is anxious about her daughter's absence, sometimes panicked. (Every day.)
Her other children live in another country. Extended family sometimes visit, but she is mostly taken care of by staff at the nursing home. She is content, for the most part, apart from her worry about her daughter.
(The daughter died over two years ago.)
There is no not-cruel option here, it seems.
I infer that implicit in your question is, "should I tell her?" (Otherwise, your question seems like "should I think poorly of the facility and of the medical staff?" and the answer is "well sure if you want to.")
And the answer to that implicit question, "should I tell her," depends entirely on who you are, what your relationship is to her, and whether you are prepared to be the point-person on a day-to-day basis dealing with her grief or other reactions. My own gut feeling is that unless you are family and are prepared to be that point-person, the answer is no.
posted by sheldman at 6:49 AM on April 30, 2018
And the answer to that implicit question, "should I tell her," depends entirely on who you are, what your relationship is to her, and whether you are prepared to be the point-person on a day-to-day basis dealing with her grief or other reactions. My own gut feeling is that unless you are family and are prepared to be that point-person, the answer is no.
posted by sheldman at 6:49 AM on April 30, 2018
Every time my grandmorther asked after her brother or mentioned that she should call him or whatever, we reminded her that he had died last week, last month, six months ago. Every time she said "oh how sad. He was such a nice borther" and then moved on. Then she's ask again in a day or two.
Her dementia was pretty mild, honestly, according to her doctors. We never lied to her, though, because she was entitled to the dignity of being treated like the adult she was.
posted by crush at 6:51 AM on April 30, 2018
Her dementia was pretty mild, honestly, according to her doctors. We never lied to her, though, because she was entitled to the dignity of being treated like the adult she was.
posted by crush at 6:51 AM on April 30, 2018
(My father died of Alzheimer's.)
My opinion:
If she has dementia, she likely won't remember from day to day what she has been told about her daughter. Or she may forget after a week. Or she may remember it forever. It's difficult to predict the responses.
The medical staff presumably has reasons for not telling her. They aren't giving you those reasons. You can either continue to push to find the answer, or honor their wishes, or ignore their wishes.
I would speculate that, from the perspective of the medical staff, telling her of her daughter's death will only upset this semi-rational woman unnecessarily. Grief is very, very difficult in someone with dementia. You don't know when it will suddenly reappear. She may "forget" that her daughter died, then suddenly remember. Grief can have profound impact on health.
On the other hand, she's human, and it's her daughter. If I were involved, I would want to tell her. But only, as sheldman says, if you are dealing with her day to day.
posted by blob at 6:54 AM on April 30, 2018
My opinion:
If she has dementia, she likely won't remember from day to day what she has been told about her daughter. Or she may forget after a week. Or she may remember it forever. It's difficult to predict the responses.
The medical staff presumably has reasons for not telling her. They aren't giving you those reasons. You can either continue to push to find the answer, or honor their wishes, or ignore their wishes.
I would speculate that, from the perspective of the medical staff, telling her of her daughter's death will only upset this semi-rational woman unnecessarily. Grief is very, very difficult in someone with dementia. You don't know when it will suddenly reappear. She may "forget" that her daughter died, then suddenly remember. Grief can have profound impact on health.
On the other hand, she's human, and it's her daughter. If I were involved, I would want to tell her. But only, as sheldman says, if you are dealing with her day to day.
posted by blob at 6:54 AM on April 30, 2018
@sheldman - yes, family. I wouldn't be the one to tell her. Her other children - who live far away - are about to visit her, and are wrestling with the question (indeed, have been since it first happened and medical staff were adamant about their view). They would not be available to her day to day after the visit. (I'm just the one with the account here.)
(The woman is in her 90s, in case that matters.)
posted by cotton dress sock at 6:54 AM on April 30, 2018
(The woman is in her 90s, in case that matters.)
posted by cotton dress sock at 6:54 AM on April 30, 2018
This is very sad.
Whether they decide to tell her or not, given that they know she misses this daughter a great deal, can they bring some pictures, items that belonged to the daughter, or other mementos for the mother to have around? She may enjoy talking about what she does remember about the daughter, being able to show the medical staff pictures, etc. That could be a way to turn this recurring preoccupation in a positive direction.
Since they aren't able to provide day-to-day care, and the medical staff is, I think I would defer to the medical staff's wishes - given that the medical staff feel strongly about this I don't think they would be well positioned to handle follow-up questions from the patient and that could lead to even more confusion and distress.
posted by Ausamor at 7:14 AM on April 30, 2018
Whether they decide to tell her or not, given that they know she misses this daughter a great deal, can they bring some pictures, items that belonged to the daughter, or other mementos for the mother to have around? She may enjoy talking about what she does remember about the daughter, being able to show the medical staff pictures, etc. That could be a way to turn this recurring preoccupation in a positive direction.
Since they aren't able to provide day-to-day care, and the medical staff is, I think I would defer to the medical staff's wishes - given that the medical staff feel strongly about this I don't think they would be well positioned to handle follow-up questions from the patient and that could lead to even more confusion and distress.
posted by Ausamor at 7:14 AM on April 30, 2018
I think that the family can only make this decision when they see their mother. I think they need to be flexible and based on their observations of their mother, her condition and her living conditions, only then should they decide.
Fwiw, I would tell her based on just the incomplete information available to you that you relayed here.
posted by AugustWest at 7:28 AM on April 30, 2018
Fwiw, I would tell her based on just the incomplete information available to you that you relayed here.
posted by AugustWest at 7:28 AM on April 30, 2018
Is there clergy associated with the facility or available to her? When I worked in long-term care (in the US), clergy often handled this type of situation. Even if the family wants to tell her themselves, the clergy may have recommendations on the best way to go about it.
posted by lharmon at 7:30 AM on April 30, 2018
posted by lharmon at 7:30 AM on April 30, 2018
Can you get a second opinion from a physician not associated with this home?
posted by grouse at 7:32 AM on April 30, 2018
posted by grouse at 7:32 AM on April 30, 2018
I'm 63. If it were me, I would want to know, at least once when I'm having a lucid day. To withhold such information feels profoundly disrespectful. I would also prefer lucidity over heart meds.
posted by theora55 at 7:37 AM on April 30, 2018
posted by theora55 at 7:37 AM on April 30, 2018
I keep trying to write more but the fact is that the possible range of situations is so extraordinarily wide, it is impossible to know as an outsider. If patient is literate and has substantial cognition, I suppose her first reaction might be "wtf why didn't you at least write me and tell me." If patient and her children are estranged or emotionally distant from each other, that too would be very different from a situation in which the only reason they haven't visited before now is economic. Extended family who have visited some may have insight to give - and telling her now would put them in an odd position I think. Whoever is the source of the information that patient asks every day and is sometimes panicked about it - if that is someone other than the nursing home staff - may also have insight into the particulars. So much depends on patient's level of cognition, and the family relationships involved.
posted by sheldman at 7:47 AM on April 30, 2018
posted by sheldman at 7:47 AM on April 30, 2018
My parents, who will have dementia, would want to know every time they ask. Is there anyway mom can move closer to the other children so they could provide this heartbreaking but maybe necessary support?
posted by I'm Not Even Supposed To Be Here Today! at 8:02 AM on April 30, 2018
posted by I'm Not Even Supposed To Be Here Today! at 8:02 AM on April 30, 2018
It sounds like this woman's only remaining close family in the country, her sole source of loving care, died, and she doesn't even know about it. No wonder she's fixated--she must feel completely abandoned! I cannot imagine that this daily anxiety and grief is any better for her than the shock of learning would be--or, rather, they're both terrible. As a family member, I wouldn't delegate this decision to paid caretakers. I agree that the decision should be taken on the ground, once they've seen their mother--but this is a decision they should be making.
posted by praemunire at 8:02 AM on April 30, 2018
posted by praemunire at 8:02 AM on April 30, 2018
I agree with sheldman; we really don't know what will happen based on the information provided. Anecdotes about relatives who took similar news well or beliefs about preserving her dignity are well meant--but this could also be a fresh grief that she has to relive every single time she hears it again as though she is hearing it for the first time--a thing I have also, anecdotally, seen happen, and it is devastating to witness and, I'm sure, for the person to experience. In fact, depending on her cognitive state, it might not even relieve her anxiety to be told. She might be devastated, then forget, then be just as anxious tomorrow. (And this is something the family should think about as well; having told her once, do they want her to be reminded of it when she asks again? And again and again and again?)
posted by tiger tiger at 8:12 AM on April 30, 2018
posted by tiger tiger at 8:12 AM on April 30, 2018
Nthing crush. After my grandmother's dementia became full blown I moved to NY, which would be her trigger for asking if I saw her sister who lived there. I always replied "Barbara died[ x time ago]", she'd say "That's terrible" and go back to whatever she was doing.
posted by brujita at 8:15 AM on April 30, 2018
posted by brujita at 8:15 AM on April 30, 2018
I read a while back about a son caring for his father who had dementia. The father would regularly ask about his wife. The son would tell him that she had died. The father would be deeply upset. The next day he would ask again where his wife was. Etc.
After repeating this process a few times and watching the fresh, intense grieving process be reinitiated daily, the son began to say “oh she just went to get some milk, she’ll be right back.” And the father would be satisfied and go back to whatever he’d been doing. And ask again the next day.
The right answer would depend on her specifics. Might be worthwhile to ask someone in charge at the facility about how these determinations are made and why.
posted by bunderful at 8:22 AM on April 30, 2018
After repeating this process a few times and watching the fresh, intense grieving process be reinitiated daily, the son began to say “oh she just went to get some milk, she’ll be right back.” And the father would be satisfied and go back to whatever he’d been doing. And ask again the next day.
The right answer would depend on her specifics. Might be worthwhile to ask someone in charge at the facility about how these determinations are made and why.
posted by bunderful at 8:22 AM on April 30, 2018
I know of another family where they didn't tell the dementia patient that he granddaughter has died tragically. The theory was that she wouldn't be able to process it; she would feel upset but not know why, or so they believed. But I'm sure every situation is different.
posted by salvia at 8:35 AM on April 30, 2018
posted by salvia at 8:35 AM on April 30, 2018
Here is an article by a specialist going through the various options. It doesn't say definitively what one should do, but rather provides possible scenarios and responses. It is a complex question that will depend on how advanced the dementia is.
posted by hurdy gurdy girl at 8:55 AM on April 30, 2018
posted by hurdy gurdy girl at 8:55 AM on April 30, 2018
Here's another article with discussion. One comment makes an interesting point about the role of memory in the grief and mourning process, and points out that Alzheimer's patients don't have access to that tool:
"As an Assisted Living administrator and the son of a mother who died of Alzheimer's I usually counsel my families, if asked, not to tell a loved one of a death if they are beyond the early stages of the disease. Memory is a strong tool in the healthy grief/mourning process and those with Alzheimer's do not have this tool. Victims of Alzheimer's can become depressed over the death of a loved one and not be equipped to recover. The knowledge is rarely of any positive use to them."
posted by hurdy gurdy girl at 8:59 AM on April 30, 2018
"As an Assisted Living administrator and the son of a mother who died of Alzheimer's I usually counsel my families, if asked, not to tell a loved one of a death if they are beyond the early stages of the disease. Memory is a strong tool in the healthy grief/mourning process and those with Alzheimer's do not have this tool. Victims of Alzheimer's can become depressed over the death of a loved one and not be equipped to recover. The knowledge is rarely of any positive use to them."
posted by hurdy gurdy girl at 8:59 AM on April 30, 2018
hurdy gurdy girl raises some really good issues and offers great information. My grandmother did not have Alzheimer's; she had vascular dementia which might well make a significant difference in how to handle these issues. In any event, it's not an unknown problem and there are likely good therapeutic practices. Talking with the providers about how the decision was made and what can be done about the anxiety she's feeling not seeing her daughter is the first step, I think.
posted by crush at 9:10 AM on April 30, 2018
posted by crush at 9:10 AM on April 30, 2018
I did not tell my demented mother that her dog had died, because it seemed to me the likeliest outcome was that she would feel terrible, and be unable to remember why she felt terrible. The question wasn't whether she had the RIGHT to know, but whether she had the ABILITY to know. Grief is both an emotional and a cognitive process, and an extremely complicated one.
posted by Sing Or Swim at 10:30 AM on April 30, 2018
posted by Sing Or Swim at 10:30 AM on April 30, 2018
@ I'm Not Even Supposed To Be Here Today! , she was invited to live with her other children several times over the years, but refused, preferring to stay in her home; by the time this all occurred, she became too physically ill to travel. (She's got a few medical conditions in addition to the heart problem.) Her other children have visited several times since it happened, wanting to share the news of their sister's death, but medical staff put them off each time. (Paternalism is a strong ethos in the medical community over there, I'm given to understand. They believe patients knowing too much about their conditions [and about news like this, I guess] is damaging to their health... Because the children are reliant on the home to care for their mother, they wanted to try to work with the staff. (It's the best such home in the country [not that there are many], and is set up, mostly, for expats' parents - most seniors live with their families unless they're in need of urgent medical care.)
Clergy will be consulted, and it's a very good idea to get a second medical opinion. (I think "shock" was mentioned as a concern, not totally sure...) It's true that there wouldn't be an ideal support network after the visit - and if the staff aren't on board... it's just hard to know what to do.
Thank you so much, everyone, for your considered thoughts. It's a difficult problem, and I think the cautious here are right to say that the thing to do depends very much on the details of her condition today, which her kids can only know when they see her.
hurdy gurdy girl, thanks so much for the resources and views you shared, in particular.
posted by cotton dress sock at 11:14 AM on April 30, 2018
Clergy will be consulted, and it's a very good idea to get a second medical opinion. (I think "shock" was mentioned as a concern, not totally sure...) It's true that there wouldn't be an ideal support network after the visit - and if the staff aren't on board... it's just hard to know what to do.
Thank you so much, everyone, for your considered thoughts. It's a difficult problem, and I think the cautious here are right to say that the thing to do depends very much on the details of her condition today, which her kids can only know when they see her.
hurdy gurdy girl, thanks so much for the resources and views you shared, in particular.
posted by cotton dress sock at 11:14 AM on April 30, 2018
I have said this several times on this site. My mother had dementia. My father died about 3 years before she did. His death was always somewhere between three weeks and three months ago for her. He did die right at that time when we felt she had to be told and she attended the funeral, etc. But then she did deteriorate. It was... not great.
posted by oflinkey at 11:30 AM on April 30, 2018
posted by oflinkey at 11:30 AM on April 30, 2018
how heartbreaking.
It sounds from the articles linked as if it's typical for folks with moderate/advanced dementia to not be equipped to handle this sort of knowledge. I wonder whether it might not be better to lie kindly. "Where's Marie?" "Marie called this morning while you were sleeping. She has to take care of things at her home. She loves you so much. She will come when she can. She's always thinking of you. She talks about you all the time. Her girls are doing really well. [&c.]"
I don't know. Is that realistic?
posted by fingersandtoes at 12:38 PM on April 30, 2018
It sounds from the articles linked as if it's typical for folks with moderate/advanced dementia to not be equipped to handle this sort of knowledge. I wonder whether it might not be better to lie kindly. "Where's Marie?" "Marie called this morning while you were sleeping. She has to take care of things at her home. She loves you so much. She will come when she can. She's always thinking of you. She talks about you all the time. Her girls are doing really well. [&c.]"
I don't know. Is that realistic?
posted by fingersandtoes at 12:38 PM on April 30, 2018
Medical staff at the home are strongly opposed to telling the woman.
It seems like it's more that the medical staff doesn't want to be the ones to tell her and consider it a family matter rather than they don't want her told at all by anyone. If it was phrased as "we don't think it's medically advisable" or "it's best for her health that she not be told", that's another matter.
posted by yohko at 4:05 PM on April 30, 2018
It seems like it's more that the medical staff doesn't want to be the ones to tell her and consider it a family matter rather than they don't want her told at all by anyone. If it was phrased as "we don't think it's medically advisable" or "it's best for her health that she not be told", that's another matter.
posted by yohko at 4:05 PM on April 30, 2018
Also, since your question is "What's the right thing to do here?"
a woman with mild to moderate dementia - and heart failure that's kept at bay with meds affecting cognition at therapeutic doses
Bearing in mind I don't have any way of knowing how much cognitive impairment this medication is causing -- I don't know what the wishes of your relative would have been, but there's a decent contingent of people who would prefer to be off the heart meds if they are causing enough cognitive difficulty that one can't comprehend significant family events, even if death came sooner. There's also a decent contingent of people who feel that they would want to live as long as possible even if they need a medication that will worsen their dementia to do it.
There's no one answer to what the right thing is here, but if anyone knows what this woman would have wanted at the end of her life that can certainly play into it, as well as religion, culture, what's available medically, and more.
It's very much from a US-centric perspective, but here's a story of one family dealing with longevity for someone with dementia (though the issues are different than in your question). If the link sends you to a paywall try opening it in an incognito tab https://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html
TL,DR: There is no "right thing" to do here that you can learn from the green -- it's going to be different for each person and each family.
And it's not going to be easy to figure out what to do. I'm sorry, this is surely a difficult situation for your family. Best of luck in grappling with the issues.
posted by yohko at 4:19 PM on April 30, 2018
a woman with mild to moderate dementia - and heart failure that's kept at bay with meds affecting cognition at therapeutic doses
Bearing in mind I don't have any way of knowing how much cognitive impairment this medication is causing -- I don't know what the wishes of your relative would have been, but there's a decent contingent of people who would prefer to be off the heart meds if they are causing enough cognitive difficulty that one can't comprehend significant family events, even if death came sooner. There's also a decent contingent of people who feel that they would want to live as long as possible even if they need a medication that will worsen their dementia to do it.
There's no one answer to what the right thing is here, but if anyone knows what this woman would have wanted at the end of her life that can certainly play into it, as well as religion, culture, what's available medically, and more.
It's very much from a US-centric perspective, but here's a story of one family dealing with longevity for someone with dementia (though the issues are different than in your question). If the link sends you to a paywall try opening it in an incognito tab https://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html
TL,DR: There is no "right thing" to do here that you can learn from the green -- it's going to be different for each person and each family.
And it's not going to be easy to figure out what to do. I'm sorry, this is surely a difficult situation for your family. Best of luck in grappling with the issues.
posted by yohko at 4:19 PM on April 30, 2018
This is such a sad, complicated situation.
Is her worry growing over time, or does it reset so she's just left wondering where her daughter is today? If her dementia is advanced enough that she's likely to forget the news once she hears it (or she might have terrible periods of remembering it and then forgetting again) then I think telling her is probably only going to make things worse for her. It might not lead to closure at all. It might only lead to a terrible situation where the grief of losing her daughter keeps seeming "new" because she keeps forgetting it and then remembering it again.
What are they telling her now, when she asks? That really matters. If she was told that her daughter had to make a short trip and will be back soon, and she could continue to be told that and she'd believe it indefinitely, then that seems like it might be the kindest option. I think, given her circumstances, you all have to err on the side of whatever will make her happiest in the time she has left.
Has she had some second opinions to make certain that this drug is really the only one that will keep her heart failure at bay? Before anybody told her about her daughter, I think it's essential to know if she needs to be on this particular drug that's causing her dementia.
posted by Ursula Hitler at 5:18 PM on April 30, 2018
Is her worry growing over time, or does it reset so she's just left wondering where her daughter is today? If her dementia is advanced enough that she's likely to forget the news once she hears it (or she might have terrible periods of remembering it and then forgetting again) then I think telling her is probably only going to make things worse for her. It might not lead to closure at all. It might only lead to a terrible situation where the grief of losing her daughter keeps seeming "new" because she keeps forgetting it and then remembering it again.
What are they telling her now, when she asks? That really matters. If she was told that her daughter had to make a short trip and will be back soon, and she could continue to be told that and she'd believe it indefinitely, then that seems like it might be the kindest option. I think, given her circumstances, you all have to err on the side of whatever will make her happiest in the time she has left.
Has she had some second opinions to make certain that this drug is really the only one that will keep her heart failure at bay? Before anybody told her about her daughter, I think it's essential to know if she needs to be on this particular drug that's causing her dementia.
posted by Ursula Hitler at 5:18 PM on April 30, 2018
This thread is closed to new comments.
It would be one thing if she had forgotten about her daughter but it's been two years(!) and she's still asking about her and worried about her. Right now she can only believe that her beloved daughter is for some reason not coming to see her or that something horrible has befallen her. Please, just tell her so she can get some closure.
posted by peacheater at 6:46 AM on April 30, 2018