Notes for Wiscon panel "Feminist Perspectives on Elder Care"

[firecat]

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 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.

Comments

[j00j]

Thanks for sharing this. I wasn't able to make it to Wiscon this year but am very interested in this topic, having seen what my parents went through with my grandparents, and as I contemplate how best to help my parents as they get older, and what's in store for me. I'd definitely be interested in more panels about this topic.

[firecat]

I'll let you know if a community gets started. Are there any specific issues you are concerned about that you want to discuss?

[j00j]

Basically all of the things you have said/people have mentioned in comments... But I'm particularly interested in things like...
- Fannish communal/assisted living options. And generally assisted living options with community activities that are meaningful to those living there. Loneliness and boredom are worries for older folks I know, and for me in the future.
- Queer and poly-friendly eldercare.
- Assistive technology options. I know a decent amount about web accessibility (and general computer hardware/software accessibility), various library services (audiobooks, etc) and can point to resources, but I wouldn't be as much help to, say, a relative who wanted to learn about types of walkers, or options to help someone with a speech impairment communicate. Obviously this stuff is out there, and I can use my librarian skills to find it if these situations come up, but it might be interesting to compile some resource posts or wikis from our collective knowledge.

[firecat]

Thanks! Those are great ideas about things to research. I'm thinking a wiki like that would require a lot of active maintenance, given how fast assistive tech is changing.

[jesse_the_k]

Wheelchair info available at
http://www.wheelchairjunkie.com
as well as this resource from Spinal Cord Injury Association (but they deal with a wider population)
http://www.usersfirst.org/resources/mobilitymap/index.php?pg=kb.page&id=1524

But data on mobility devices is hard to come by. If an elder has a particular impairment (my MIL has Parkinson's) then the relevant $disease society probably has a closet of no-longer-used equipment as well as wisdom gathered by one or more of its members.

[firecat]

Thanks much!

[selki]

withholding food and water

What?

[evilawyer]

I think she means "withholding nutrition and hydration". It's a common thing referred to in Advance Directives (health care power of attorney) and refers to (or, rather, is meant to refer to) end of life situations where the person can't eat, drink and is usually not fully present cognitively-speaking and doesn't know what's going on around them (or so Western medicine assumes) and so has to get nutrition from an IV drip and GI (or similar) tubes. It's another level of "being hooked to a machine", but it's not something everyone thinks or like to think about because, as I think you'll agree, it sounds like starving a person to death.

[selki]

Oh! So a living will kind of directive someone would put in place while still competent to do so, like DNR.

[firecat]

When used correctly, yes. One panelist told a story where hospital staff labeled a person's condition as untreatable without doing all the basic tests, and ordered that the person be put into hospice(including withholding nutrition/hydration), but the person turned out to have a treatable urinary tract infection.

[evilawyer]

Yup. But it's not something that people really think of even when their thinking about end of life care. When I practice law, I saw that people were always quick
to say "No respirator" or "No chest compression." When I'd ask "What about nutrition and hydration?", though (and I always did point blank or they would never even want to think about it), they'd get really hinky about the whole issue, even after I explained we were talking about a situation in which they wouldn't be eating or drinking and weren't going to be getting better. It's a topic that most people find too uncomfortable to think of.

The question I think the panel firecat was on was considering was "Are doctors pushing the decision to withhold life-sustaining treatment prematurely just because the person is aged and demented?" That's just my read on firecat's notes, though, and is no doubt significantly informed by the fact that I read a sociological study the other week that, as a small finding, said that elders may want to be more aggressive about end of life treatment than their caregivers might think. All the more reason to try to break down the discomfort barrier and encourage candid conversation between elders and caregivers about what the elder really wants as far as medical care when the end of this life is imminent (which might mean weeks or months rather than the "hours" everyone likes to think in).

[firecat]

Do you know about compassionandchoices.org ? They are workin on right to die legislation and advance health care directives in various states. They have some good resources on the food and nutrition at end of life issue.

It took me about two years from first encountering the concepts to being comfortable enough to make out a directive that says no feeding tubes, etc. (which I still have to get signed, sigh, but at least my partner knows my wishes.)

[evilawyer]

Yes. They are good, and I think their information on what nutrition and hydration withholding are all about are excellent. But that's me. Thinking about withholding is an extremely tough thing. Let's face it, it's something the mind equates with hastening death or bringing it about when it might not otherwise occur. It's human to think that way, and it takes some getting used to in the context of the life-death continuum. I'm glad your partner and you have discussed it and understand each other. It's such a hard thing to have to talk about. And get that puppy signed!) Which I say even though I have no room to talk --- my S.O. and I have discussed it and have agreed that I need someone else to be my agent because he might not be able to let go as soon as I want, and I've got an agent on board who understands what I want and cares about me enough to do it and take the heat for it, but have I got the thing signed? Of course not!)

[evilawyer]

Off to read your notes in a minute, but as to your question: On LJ, I've been singularly disappointed in the past over efforts to discuss anything eldercare related. The only people on LJ that have been interested in hearing anything about eldercare or aging issues in any venue have been people who have already passed through one care crisis or more with their own elders/people for whom they provide care. LJ has, as it has expanded, become as youth obsessed as anything Western, I fear. DW, there may be more support. I know I recently listed "gerontology" as an interest on my profile page and saw a whopping total of 3 other people who also did (or maybe it was 2 and I was third, I can't remember), but at least DW's atmosphere is much more tolerant of different classes of individuals --- maybe that will translate into more people being willing to talk about/look to accounts here on DW that candidly discuss issues of aging, elder care, etc. (I've been reticent up until now to post too much on elder issues here on DW, but that's actually more down to totally crap experiences on LJ where I've brought up points regarding elder care and been met with shouts to STFU because no one wants to talk about "diaper-wearing old droolers" than it is to anything that's ever happened here on DW.) So, in answer to your question, I think an LJ community would be a waste of time. DW, probably would be good.

If you or anyone you know want to get such a resource account started, let me know --- I've got stuff like that lined up in geographical areas I work in and some statewide things. What I find in my work and in my own experience with my mother is that there is nothing more daunting than to go down to the local area organization on aging and be handed a booklet of hundreds of resources that you have to wade through. What I'm working on in my area is setting up a resource that helps people make the contacts they need to gather full info to make elder care plans. From my own experience, I now that even finding the time to make the phone call to set up an appointment at adult day care is too much to deal with between trying to work and trying to do the hands on work of caring for an elder. Anyway, I'm rambling. If you get something going, I'd love to help.

ETA:

Just one thing re: Can we plan fannish and/or queer assisted living?

Look into social services in Napa County. I spoke with a grad student at SFSU who was telling me that there such things, as well as other support services, being set up up there.

[firecat]

I appreciate your perspective and knowing you have resources and experience! Is the resource you're thinking of setting up different from an eldercare manager or coach?

I was fortunate to get a lot of support (mostly emotional, some practical) from my friends on LJ/DW when I was caring for my mom. I didn't look for support from the community at large. How awful that you got yelled at.

[evilawyer]

It's not geriatric care management, but it's close. What I do is make the contacts for people with available services, both to get them started and with an eye to helping them develop the skills to keep up with increasing need. The mistake, if you can call it that, that people make is thinking they can go to some sort of clearinghouse that will also help them do the legwork of finding services; as you more than likely found out, that's not how it works. It's a process elders and their families need to take charge of an work, and people need to feel like it's something they can deal with rather than be overwhelmed with raw information sources. I'll be expanding it in future to include other things once I develop a few relationships. Something I've always wanted to do, but supporting my mother and other family made it something I had to put on the back burner until now.

My LJ friends were extremely supportive about my mother, to be honest (there was no DW around as my mom died in 2007). For the seven years she lived with me (which I now realize was basically seven years on hospice), they were wonderful. It was when I'd go into communities that were at least caregiver related (although they were most child-related, to be fair) and ask for practical advice or direction that I got the close-minded thinking. No one wants to think of aging, the aged, or dying. I have my theories, but the truth is aging and death are part of life. We have to change as a society to see that or we're all doomed. IMO.

[firecat]

Definitely sounds like a great resource.

I went to the alz.org forums for practical stuff. They were very helpful.

I agree society would probably be better if we were less avoidant of those subjects.

[ceciliatan]

Wait, you were at Wiscon and I missed you? Or am I having memory loss already? (Likely, lack of sleep does that to me...)

[firecat]

I was there! I'm sorry I didn't introduce myself. You might have seen me on a three wheeled mobility scooter.

[ljgeoff.livejournal.com]

This is a great recap, and just as I remember it.

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.

I was particularly frustrated by this, but it seemed to me at the time that the people who were attending really wanted to talk about how to care for their elders and the frustrations that they were experiencing -- so I let it slide. I've suggested the caregiver panel for next year. Maybe you could too -- perhaps with two panel suggestions, worded differently, one of them will make it.

[firecat]

I will definitely promote the idea.

[magentamn.livejournal.com]

Yes, this was frustrating. I wanted a discussion on how we can and will care for the elderly of fandom and other alternative communities. As someone who is aging - but then, aren't we all? - I want to work on ways to spend the later years of my life in the company of people like me. I don't have children who might take care of me, and I am not close to biological family. It's a thorny issue.

[firecat]

I am interested in this too, for all the same reasons.