How to get involved with the care of a distant family member
January 19, 2022 2:51 AM
My aunt is aging rapidly, seems to be getting dementia, and recently was hospitalized with COVID, I have no way to reach her it seems, and my cousin who I think is my only connection to her isn't answering my inquiries.
My extended family is not close physically or emotionally, but my aunt and I have always had a connection - I lived with her for a summer when I turned 18 and we talk once a year or so and I have visited her every 10 years or so and we've always vibed. However, she lives alone on the East Coast (I'm on the West) and I have no contact information for her neighbors or friends.
Over the last few years I've reached out more frequently (a few times a year) as my mom (her sister) was dying of dementia, and in the last year have noticed my aunt seems to be getting dementia too. This summer I finally direct messaged my cousin - aunt's daughter - through facebook to say my mother had died and to express my concern about my aunt. I didn't get a response, but did observe that she read my message. I don't have an email address for her and she has a somewhat common name. FYI cousin also lives very far away from both me and my aunt.
In October I talked to my aunt for an hour or so and was concerned enough to inquire about what social service agencies she has worked with and who her primary care doctor is and left messages on many voicemails inquiring if there was a social worker or something following up. Only one agency called back, said they couldnt' share any info because HIPAA so wouldn't be calling back again, but did say they have decided to increase the services they provide to aunt . Unclear what those services are.
I tried to reach aunt again a few weeks ago over a several day period - no answer. Checked cousin's facebook: she noted aunt was hospitalized with COVID at the end of the year, no follow up posted. Presumably aunt did not die or something dramatic because following posts are just like, normal facebook stuff.
This week I found a phone number on facebook for cousin and texted and called - no outgoing message so unclear if this is her current number.
Anyway, I'm stumped. I have a fair amount of experience supporting an aging person with dementia both from my mother and also I do a lot of resource connection for medically complex folks through my work, but seemingly there is no way to get involved or even get an update about my aunt? I have the money and could take the time off to fly out and spend some time arranging - in home care? A skilled nursing facility? Something else? But this makes no sense to do without the collaboration of her daughter, who I know from enough context clues to be at least somewhat involved in her mother's care.
I'm confident my cousin has non-malicious reasons for non-response. Could be anything from irritated perception that I'm a busybody (which maybe I am?) to denial and avoidance, but I'm sure whatever the reason it's likely something understandable but... I am stuck.
How do I find out if my aunt is OK? How do I provide some support toward ensuring her safety? How much is this something I should stay out of - since it's not my mother?
My extended family is not close physically or emotionally, but my aunt and I have always had a connection - I lived with her for a summer when I turned 18 and we talk once a year or so and I have visited her every 10 years or so and we've always vibed. However, she lives alone on the East Coast (I'm on the West) and I have no contact information for her neighbors or friends.
Over the last few years I've reached out more frequently (a few times a year) as my mom (her sister) was dying of dementia, and in the last year have noticed my aunt seems to be getting dementia too. This summer I finally direct messaged my cousin - aunt's daughter - through facebook to say my mother had died and to express my concern about my aunt. I didn't get a response, but did observe that she read my message. I don't have an email address for her and she has a somewhat common name. FYI cousin also lives very far away from both me and my aunt.
In October I talked to my aunt for an hour or so and was concerned enough to inquire about what social service agencies she has worked with and who her primary care doctor is and left messages on many voicemails inquiring if there was a social worker or something following up. Only one agency called back, said they couldnt' share any info because HIPAA so wouldn't be calling back again, but did say they have decided to increase the services they provide to aunt . Unclear what those services are.
I tried to reach aunt again a few weeks ago over a several day period - no answer. Checked cousin's facebook: she noted aunt was hospitalized with COVID at the end of the year, no follow up posted. Presumably aunt did not die or something dramatic because following posts are just like, normal facebook stuff.
This week I found a phone number on facebook for cousin and texted and called - no outgoing message so unclear if this is her current number.
Anyway, I'm stumped. I have a fair amount of experience supporting an aging person with dementia both from my mother and also I do a lot of resource connection for medically complex folks through my work, but seemingly there is no way to get involved or even get an update about my aunt? I have the money and could take the time off to fly out and spend some time arranging - in home care? A skilled nursing facility? Something else? But this makes no sense to do without the collaboration of her daughter, who I know from enough context clues to be at least somewhat involved in her mother's care.
I'm confident my cousin has non-malicious reasons for non-response. Could be anything from irritated perception that I'm a busybody (which maybe I am?) to denial and avoidance, but I'm sure whatever the reason it's likely something understandable but... I am stuck.
How do I find out if my aunt is OK? How do I provide some support toward ensuring her safety? How much is this something I should stay out of - since it's not my mother?
Open-ended questions about how your aunt is doing or how you can help may very well be too much right now for someone who is overwhelmed, grieving, or just struggling to cope with life in a pandemic. If you reach out again, how about one specific, easily answerable question? I like mskyle's approach of asking for current contact information for your aunt so you can call her / send her flowers or a note. Make it easy for your aunt to reply by asking something with a straightforward answer and minimal emotions/backstory involved.
If she answers that, you could follow up with thanks, good wishes, and a statement that you've got some expertise in this area and would be happy to assist in arranging care for your aunt if needed. But I think it's very possible that her closer family will not want to get a distant relative involved in this way, if they think she's already being well served with the available resources. And maybe she is! You don't know yet. So I think for now I would dial back on the offering help and just focus on reestablishing contact with your aunt.
I hope you are able to get back in touch with her and that she's doing okay.
posted by Stacey at 5:28 AM on January 19, 2022
If she answers that, you could follow up with thanks, good wishes, and a statement that you've got some expertise in this area and would be happy to assist in arranging care for your aunt if needed. But I think it's very possible that her closer family will not want to get a distant relative involved in this way, if they think she's already being well served with the available resources. And maybe she is! You don't know yet. So I think for now I would dial back on the offering help and just focus on reestablishing contact with your aunt.
I hope you are able to get back in touch with her and that she's doing okay.
posted by Stacey at 5:28 AM on January 19, 2022
Keep in mind that facebook shows messages as read when they have only been received, and glitches frequently. It is more than probable that your cousin has high privacy settings which prevent random people from the political facebook groups she follows from messaging her, and she she never put you on a safe list, you are blocked too. You didn't describe your relationship with your cousin, so from that I am guessing you don't have one. You perhaps only know her through conversations with your aunt and she basically has no idea who you are or that you would try to contact her.
If you want to contact her come up with a way other than facebook. Your best bet is to think of a mutual who knows your cousin and would have current contact information. Failing that you're down to becoming, or hiring a private detective and sleuthing until you find a way to reach her.
Have you tried sending snail mail to your aunt? Your aunt may be home with a daily worker or some such, as the hospital will have wanted to discharge her, and in my experience they let people with dementia go on living independently with insufficient support for a long time. Your aunt could have lost her ability to deal with cell phones but be back home. There is nothing to be lost from sending a slew of affectionate cards, including one with a self addressed stamped card enclosed for her to return to you, the way you do when corresponding with five year olds who don't have a budget for stamps or the ability to remember and print a legible address, but like a five-year-old there is quite possibly someone willing to pop a card into the mail for her if she is still at home. You could also send mail to your cousin c/o your aunt, as if your aunt is doing badly mail may be being forwarded to your cousin, or to someone who is providing essential support. Writing "caretaker please open" on the envelope will help encourage anyone other than your aunt who receives it to take a look rather than just tossing it with the advertising.
posted by Jane the Brown at 6:05 AM on January 19, 2022
If you want to contact her come up with a way other than facebook. Your best bet is to think of a mutual who knows your cousin and would have current contact information. Failing that you're down to becoming, or hiring a private detective and sleuthing until you find a way to reach her.
Have you tried sending snail mail to your aunt? Your aunt may be home with a daily worker or some such, as the hospital will have wanted to discharge her, and in my experience they let people with dementia go on living independently with insufficient support for a long time. Your aunt could have lost her ability to deal with cell phones but be back home. There is nothing to be lost from sending a slew of affectionate cards, including one with a self addressed stamped card enclosed for her to return to you, the way you do when corresponding with five year olds who don't have a budget for stamps or the ability to remember and print a legible address, but like a five-year-old there is quite possibly someone willing to pop a card into the mail for her if she is still at home. You could also send mail to your cousin c/o your aunt, as if your aunt is doing badly mail may be being forwarded to your cousin, or to someone who is providing essential support. Writing "caretaker please open" on the envelope will help encourage anyone other than your aunt who receives it to take a look rather than just tossing it with the advertising.
posted by Jane the Brown at 6:05 AM on January 19, 2022
Health care providers are prohibited from disclosing information to you, as I'm sure you know. Contact your cousin, volunteer to take on the task of information broker, letting people know how Aunt is doing. You might be able to ask Aunt's nurse, or the unit administrator to relay a note to Cousin, asking Cousin to email you. I hope your Aunt is doing okay.
posted by theora55 at 11:43 AM on January 19, 2022
posted by theora55 at 11:43 AM on January 19, 2022
I have been remotely helping a close family member care for another close family member in person, and it's tough. That is despite the fact that both of them welcome my help. It's just an inherently challenging situation because bringing in another person increases the communication and coordination overhead, and many things can only realistically be done in person. Unsolicited contacting of care providers really crosses a line, to me, though. If you think there's neglect or self-neglect, by all means make that call to Elder Protection. But short of that, leaving voicemails is likely to confuse everyone at best, and may alienate the proximate caregiver. Sometimes there isn't anything you can do to help a bad situation. Sorry.
posted by wnissen at 4:52 PM on January 19, 2022
posted by wnissen at 4:52 PM on January 19, 2022
I would not cease attempting to make contact! Thank you for the effort you've put in already.
One of the biggest problems for an aging society is folks frequently don't care *enough,* and beyond a one-off call or note will never try again. This is one of the reasons the elderly are so frequently isolated — and that isolation is one of the reasons the elderly are prime targets for neglect and other kinds of abuse.
From the sound of it, you may actually have to go visit to get a lay of the land. I would use your cousin's number to let her know when you're coming. Simply make it clear that you will be taking care of yourself and don't expect hospitality, but do plan to spend a fair amount of time seeing your aunt, and would like to see her too. In terms of offering long-distance help, I would turn this into a "listening tour" to see what your aunt may need or want first without presuming.
posted by Violet Blue at 2:53 AM on January 20, 2022
One of the biggest problems for an aging society is folks frequently don't care *enough,* and beyond a one-off call or note will never try again. This is one of the reasons the elderly are so frequently isolated — and that isolation is one of the reasons the elderly are prime targets for neglect and other kinds of abuse.
From the sound of it, you may actually have to go visit to get a lay of the land. I would use your cousin's number to let her know when you're coming. Simply make it clear that you will be taking care of yourself and don't expect hospitality, but do plan to spend a fair amount of time seeing your aunt, and would like to see her too. In terms of offering long-distance help, I would turn this into a "listening tour" to see what your aunt may need or want first without presuming.
posted by Violet Blue at 2:53 AM on January 20, 2022
It is wonderful that you care and I agree with the suggestions to continue to try reaching out to her and her caregiver(s) to let them know to offer love and support if they desire that.
This will vary, of course, but I will also just add that you may want to be careful about trying to visit without having made contact first and knowing that you would be welcomed. A number of my elderly relatives and/or their caregivers are not accepting any visitors (including beloved family) due to COVID risk, even those who have already had a bout with it. Also, separate from COVID concerns, I've known many folks to not want to be seen when they are ill, and to refuse visitors. I am not sure what the case may be with your Aunt. If you think she is unsafe, though, please do call for a welfare check.
posted by fies at 2:59 PM on January 20, 2022
This will vary, of course, but I will also just add that you may want to be careful about trying to visit without having made contact first and knowing that you would be welcomed. A number of my elderly relatives and/or their caregivers are not accepting any visitors (including beloved family) due to COVID risk, even those who have already had a bout with it. Also, separate from COVID concerns, I've known many folks to not want to be seen when they are ill, and to refuse visitors. I am not sure what the case may be with your Aunt. If you think she is unsafe, though, please do call for a welfare check.
posted by fies at 2:59 PM on January 20, 2022
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I don't think you should expect to become part of your aunt's care in terms of coordinating her care or interacting with her providers - she is someone who you care for deeply, but she's also someone who you used to see only once a year.
I *do* think it's reasonable to ask if there's a way you can see your aunt again. But if your cousin is, e.g., coordinating her mom's transfer to a skilled nursing facility, she may just not have the bandwidth to engage with you about this right now. Your aunt was hospitalized a few weeks ago - assuming she's been discharged, it's very possible she's currently in rehab or similar. (I wouldn't place too much emphasis on your cousin's "normal facebook stuff" posts - people use facebook in a lot of different ways, and you might not be seeing all her posts.)
I think the important things you want to convey to your cousin are:
1) you love your aunt/cousin's mom and miss her (include details about your relationship with your aunt, happy memories, etc.) and would love to talk to her
2) even if talking with her is not possible, you would greatly appreciate an an address where you could send her a card or flowers or something
3) if your cousin ever needs help with getting your aunt the care she needs you are more than happy to do what you can, including flying out to Aunt's or Cousin's area - specific offers preferred, e.g. "I can research facilities/resources for you including making site visits, I can provide respite care, I can run errands."
(Also do you have a sense of what your cousin's relationship with her mom is like? I know a lot of mother-daughter pairs where the mom is much-beloved by people outside the nuclear family but the mom and daughter have a fraught relationship. For those daughters it can sometimes be hard for hear how awesome their mom is and how much other people vibe with her.)
posted by mskyle at 5:15 AM on January 19, 2022