Notes for Wiscon panel "Feminist Perspectives on Elder Care"
Feminist Perspectives on Elder Care
Track: Feminism and Other Social Change Movements
Panel description
Like child care, the vast majority of elder care is done by women and is frequently unpaid. (When it is paid work, it is often paid extremely poorly.) Many WisCon attendees are dealing with elder care issues, either because they have aging parents, or because they are the aging parent. Are there political solutions we could be working toward? Are there pragmatic solutions we can share with each other? Are there new ideas (for caregiving, accessibility, communities, etc.) that we can offer as a shared vision?
twitter hashtag: #ElderCare
Panelists:
(I did not list most panelists' journal/blog info, for reasons of privacy; if you want your panelist name associated with your blog or journal, leave a comment or send me a private message.)
Criss Moody
Janice Mynchenberg
L J Geoffrion![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
ljgeoff
firecat
Naomi Kritzer
I was a panelist and I was not able to take notes. This is what I remember, and I hope others on the panel and attending the panel —and anyone with questions or information—will contribute comments/resources.
During the panel I was wondering if it would be useful to create a DW and/or LJ community and/or mailing list for eldercare resources for people who are fannish and/or alternative in other ways. Thoughts?
Janet works for a senior living community with an alternative view of aging: elderhood is a separate stage of life from adulthood; they support each individual to live their life fully.
Criss was a remote caregiver and held financial and medical power of attorney for both parents starting when she was in her 20s.
Lisa has been a home health care worker most of her life, on and off. She gets paid $8.50 per hour, less than she gets paid to sling hash. This gives her a different viewpoint from some people. She thinks we try to live too long.
Naomi said that as a parent she had access to a "brain trust" of other parents, but there does not seem to be a "brain trust" of elder caregivers. People don't want to talk about it.
's mom had Alzheimer's and lived in a couple of assisted living places. Her family had money and privilege, but it still sucked. There oughta be a better way.
Although there are various supports for aging and caregivers, there are fewer supports available for elders or their caregivers who live in alternate family structures. Can we plan fannish and/or queer assisted living?
Queer people who end up needing care in conservative areas have to go back into the closet. One audience member described "springing" her queer community mentor from a nursing home he wound up in, in a very conservative area. She used interesting ploys that worked, but were risky. HIPAA laws make it difficult for people with chosen family to have their chosen family involved with their care (you are often asked if you are a blood relative). I think I remember having talked about how it's not lying to say you are someone's sister, cousin, eg, if that is what works. That might be harder with an ongoing care relationship, though.
Naomi's father in law(?) lived the last part of his life in coop housing with some other people of his generation.
alz.org has good caretaker forums for caretakers of people with dementia (not just Alzheimer's)
Something that comes up a lot in elder health care is that dementia symptoms are not always chronic; sometimes they are the acute result of medication cocktails (sometimes even after a person has been on a particular set of meds for a while), and physical health issues can also cause them (especially urinary tract infections, which are common in older people). But some medical professionals, including ones in hospitals, are quick to assume that any dementia is chronic, and sometimes too quick to assign people to hospice, including withholding food and water.
Generally caregivers need to be keeping an eye on things all the time. If an elder goes into assisted living, you can't just assume they're taken care of.
If possible, someone should accompany elders on doctor visits. (Someone should accompany patients, elders or not, on most doctor visits.)
Try to find doctors who have experience with geriatric medicine. Elders have different reactions to meds sometimes; are often on many meds, which might interact.
For a variety of reasons, it's hard for elders and children (or people in other relationships who might have care of an elder) to have conversations about end of life issues. This book is helpful in figuring out how to bring up elder care issues and end of life wishes with elders:
http://www.amazon.com/How-Say-It-Seniors-Communication/dp/0735203806/
How to Say It to Seniors: Closing the Communication Gap with Our Elders
David Solie
Many elders with dementia are treated with the wrong drugs or too many drugs, and are treated for the purpose of sedation rather than psychological comfort. Sometimes drugs for "treating" dementia end up making it worse. This book was recommended by Janet as an alternative:
http://www.amazon.com/Dementia-Beyond-Drugs-Changing-Culture/dp/193252956X/
Dementia Beyond Drugs: Changing the Culture of Care
G. Allen Power
(Personally I think drugs have a place, but as an adjunct to respectful and personalized care, not instead of them.)
Janet also mentioned a second book, but I don't remember the title.
By law, every county in the US must have a commission on aging. Resources such as support groups are available in many locations. Check local senior centers.
Unfortunately the panel didn't get around to addressing political aspects of eldercare, especially the low pay and other lousy conditions for eldercare workers, and the ways that race, class, and culture intersect with eldercare. I hope these are topics at a future WisCon.
Track: Feminism and Other Social Change Movements
Panel description
Like child care, the vast majority of elder care is done by women and is frequently unpaid. (When it is paid work, it is often paid extremely poorly.) Many WisCon attendees are dealing with elder care issues, either because they have aging parents, or because they are the aging parent. Are there political solutions we could be working toward? Are there pragmatic solutions we can share with each other? Are there new ideas (for caregiving, accessibility, communities, etc.) that we can offer as a shared vision?
twitter hashtag: #ElderCare
Panelists:
(I did not list most panelists' journal/blog info, for reasons of privacy; if you want your panelist name associated with your blog or journal, leave a comment or send me a private message.)
Criss Moody
Janice Mynchenberg
L J Geoffrion
ljgeofffirecatNaomi Kritzer
I was a panelist and I was not able to take notes. This is what I remember, and I hope others on the panel and attending the panel —and anyone with questions or information—will contribute comments/resources.
During the panel I was wondering if it would be useful to create a DW and/or LJ community and/or mailing list for eldercare resources for people who are fannish and/or alternative in other ways. Thoughts?
Janet works for a senior living community with an alternative view of aging: elderhood is a separate stage of life from adulthood; they support each individual to live their life fully.
Criss was a remote caregiver and held financial and medical power of attorney for both parents starting when she was in her 20s.
Lisa has been a home health care worker most of her life, on and off. She gets paid $8.50 per hour, less than she gets paid to sling hash. This gives her a different viewpoint from some people. She thinks we try to live too long.
Naomi said that as a parent she had access to a "brain trust" of other parents, but there does not seem to be a "brain trust" of elder caregivers. People don't want to talk about it.
Although there are various supports for aging and caregivers, there are fewer supports available for elders or their caregivers who live in alternate family structures. Can we plan fannish and/or queer assisted living?
Queer people who end up needing care in conservative areas have to go back into the closet. One audience member described "springing" her queer community mentor from a nursing home he wound up in, in a very conservative area. She used interesting ploys that worked, but were risky. HIPAA laws make it difficult for people with chosen family to have their chosen family involved with their care (you are often asked if you are a blood relative). I think I remember
Naomi's father in law(?) lived the last part of his life in coop housing with some other people of his generation.
alz.org has good caretaker forums for caretakers of people with dementia (not just Alzheimer's)
Something that comes up a lot in elder health care is that dementia symptoms are not always chronic; sometimes they are the acute result of medication cocktails (sometimes even after a person has been on a particular set of meds for a while), and physical health issues can also cause them (especially urinary tract infections, which are common in older people). But some medical professionals, including ones in hospitals, are quick to assume that any dementia is chronic, and sometimes too quick to assign people to hospice, including withholding food and water.
Generally caregivers need to be keeping an eye on things all the time. If an elder goes into assisted living, you can't just assume they're taken care of.
If possible, someone should accompany elders on doctor visits. (Someone should accompany patients, elders or not, on most doctor visits.)
Try to find doctors who have experience with geriatric medicine. Elders have different reactions to meds sometimes; are often on many meds, which might interact.
For a variety of reasons, it's hard for elders and children (or people in other relationships who might have care of an elder) to have conversations about end of life issues. This book is helpful in figuring out how to bring up elder care issues and end of life wishes with elders:
http://www.amazon.com/How-Say-It-Seniors-Communication/dp/0735203806/
How to Say It to Seniors: Closing the Communication Gap with Our Elders
David Solie
Many elders with dementia are treated with the wrong drugs or too many drugs, and are treated for the purpose of sedation rather than psychological comfort. Sometimes drugs for "treating" dementia end up making it worse. This book was recommended by Janet as an alternative:
http://www.amazon.com/Dementia-Beyond-Drugs-Changing-Culture/dp/193252956X/
Dementia Beyond Drugs: Changing the Culture of Care
G. Allen Power
(Personally I think drugs have a place, but as an adjunct to respectful and personalized care, not instead of them.)
Janet also mentioned a second book, but I don't remember the title.
By law, every county in the US must have a commission on aging. Resources such as support groups are available in many locations. Check local senior centers.
Unfortunately the panel didn't get around to addressing political aspects of eldercare, especially the low pay and other lousy conditions for eldercare workers, and the ways that race, class, and culture intersect with eldercare. I hope these are topics at a future WisCon.