General Discussion
Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsIs there any interest in an elder-care group? UPDATED: Group Formed!
Last edited Tue Jun 17, 2014, 12:13 PM - Edit history (1)
I know quite a few of us are either primary or secondary caregivers for parents, grandparents and other elderly relatives. We all end up with questions that are hard to ask. With issues like assisted living, long term care, in home care, full-time care giving, estate management and planning, finding aid, navigating insurance, advocating for your person's wishes, and hospice, getting old is increasingly complex.
Then there are the personal issues -- sundowning, communication when the person being cared for is a parent, when to ask for the keys, when it's time for more help, how to safely and sanely vent the frustrations that come with caregiving.
Long-term caring is also political -- many caregivers are either under or unemployed because they're care-givers. Even when we manage to keep our careers, caring for an elderly person takes time and commitment that employers often don't get, or won't. The rights of the elderly and the balance between autonomy and safety is an issue: when should someone stop driving, do people with dementia have the right and the ability to consent to relationships? Can someone with dementia choose to end a medication? Seek alternate care? And the people who do the caregiving professionally -- how do we help organize with our professional caregivers so they get a living wage and benefits and safe working environments? How do we advocate for in-home, family carers to be compensated? In short, how can we, as Democrats, make the elder-care safety net work better for everyone?
UPDATE:
We have a group!
http://www.democraticunderground.com/?com=forum&id=1274
We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
uppityperson
(115,674 posts)politicat
(9,808 posts)We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
JimDandy
(7,318 posts)politicat
(9,808 posts)We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
Habibi
(3,596 posts)Though my elder-care days are over (at least as far as parents are concerned), I like to offer support and encouragement to those going through it. It can be a very tough road.
politicat
(9,808 posts)That's a piece of the puzzle, too -- grief. It happens before they're gone, for the person they used to be, and while they're going, for the loss of what has become normal, and then after.
Also, the fact that "grief" is such a mixed bag of emotions -- relief and anger and frustration and sadness and exhaustion and and and.
Not to mention the level of socially inappropriate black humor that caregiving breeds. Because some days, it's either laugh at the horror or go noisily over the edge. It's so hard to explain sometimes to people who aren't in the trench that it's not callousness, it's coping.
politicat
(9,808 posts)We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
Borchkins
(722 posts)and would participate in such a group. My elder care days are still ahead of me. My folks are fine now.
B
KittyWampus
(55,894 posts)and now am taking care of my brother who has same disorder she had.
There are differences but still a lot of overlap.
renate
(13,776 posts)Did you get a break at all or did you go straight from caring for your mother to caring for your brother? I can't guess at which would be harder. If you did get a break, the second time would be like starting from scratch (but this time grimly knowing how tough it would be)... but if you didn't get a break, well, you wouldn't have gotten a break. Either way, I am sorry. I hope you are also taking care of yourself when you can.
KittyWampus
(55,894 posts)nor the psychological balance my mother had. Not that she was extremely balanced. But she was more of a fighter, IYKWIM.
It took me taking a lot of control away from my father and insisting we get professional aides to come in.
politicat
(9,808 posts)My hat's off to you. I'm six months into this adventure with my grandmother, and I've already told my mother that she must designate one of my sisters to do this for her, because I can't do it again. I hope somebody tells you you're incredible on a regular basis (with admiration in their voice) because someone should.
But yes, it's similar -- parents or sibs. Caring for adults is not like parenting, and takes a special fortitude.
politicat
(9,808 posts)We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
cry baby
(6,682 posts)in a forum for support!
Caregiving is very difficult and communicating with people that are in similar situations would be invaluable.
politicat
(9,808 posts)We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
cry baby
(6,682 posts)You're a dear!
frazzled
(18,402 posts)I'd drop in to participate in discussions occasionally. I'm afraid the answers to the various questions you propose might find different answers depending on different people's abilities, needs, philosophies, etc. But valuable advice could be gleaned.
As a serio-comic starter, do consult Roz Chast's new hilarious/heartbreaking book, Can't We Talk About Something More Pleasant?, an excerpt here:
http://www.newyorker.com/sandbox/sketchbook/chast-parents/
politicat
(9,808 posts)I've heard excerpts of the book and interviews with Ms. Chast, but I admit I keep avoiding it. Maybe because in my specific relationship with my grandmother, she was a geriatrics nurse for most of her career, and I'm a research psychologist, so the difficult discussions on the practical matters of end of life and quality of life are easy for us. I'm liking the excerpt, though, so it's on my list now.
politicat
(9,808 posts)We're located under Home & Family, as Elder-caregivers.
Thanks so much for your support!
Faux pas
(14,582 posts)Sounds like a winner to me!
LeftofObama
(4,243 posts)I would certainly subscribe to an elderly care group. I am the primary caregiver for my 85 year old mother and some days I could sure use someone to talk to.
etherealtruth
(22,165 posts)My almost 80 year old mom lives with me ... but, I must admit I rarely post outside of GD.
politicat
(9,808 posts)The subscription model is useful, but sometimes it would be nice if there was just a running thread on GD similar to the photo contests.
Jamastiene
(38,187 posts)It is very tough, mentally, to take care of a sick elderly relative. Add to it that the relative used to be a drill sergeant and thinks the household (my house) should be run that way and I'm pulling my hair out some days. I certainly stay on my toes. I never signed up for being rousted out of bed and having orders barked at me quite so sternly. I'm more of a relax and enjoy life kind of person. Learning how to deal with the stress, alone, would make such a group appealing to me.
politicat
(9,808 posts)Oi, that's a tough place to be.
Are you dealing with a level of dementia? That's what I've got (Gran, being sniffy about "that carpet's not clean" or "I would have used X instead of Y" in whatever dish the kitchen didn't make JUST right). I've figured out it's her way of asserting a level of control over an increasingly out of control world. (It really doesn't matter that her carpet in her home was always at the "non-toxic so good enough" clean stage, and while she cooked well, her spice shelf could qualify as archeology.) It has nothing to do with her standards and everything to do with needing to defend what she can of her slipping control on her mind.
For the most part, my strategy with her is to either ignore it or offer her the option of doing it herself. (She probably could still run a vacuum, and I've offered to write down her recipe if she'll dictate it.) That usually makes her back down from her dudgeon -- she doesn't want to do it, she needs to mark her territory. I've also noticed the criticism seems to rise out of boredom, so when I start hearing it, I find something for her to do. (She clips coupons for charity, or I shove her iPad in her hands and send her to Facebook, or I give her the laundry to fold or I hand her her therapy Simon game.) Obviously, I don't give her sharps or hots or offer anything seriously risky, but the offer of control is often enough.
With crack o' dawn-ism, is there any way to define certain hours as household quiet time, not to be broken except for blood, fire or vomit? I find I'm pulling a lot of tips from my sisters (who are parents, and I'm not) in how they handle their children. I've built a lot of rules and structure, both for my sanity and to provide my grandmother with the security of routine. (I've got the advantage that I cannot physically care for her -- she outweighs me by a lot -- so she's in assisted living. I have the option of going elsewhere. HOWEVER, you need respite, which should be available via Medicare/VA. Even if only for 6 hours a week, it's a sanity saver. And respite carers usually get much better behavior because being polite for strangers is such old conditioning.)
I also resist yelling and whining. (I get both.) If something is barked at me, the answer is, "No. Try again when you can be as civil as you taught me to be." Whining gets, "Really? Are you four?" My grandmother has only moderate dementia, so she still gets sarcasm and humor, and I have a killer deadpan.
The biggest piece is that I had to relinquish my need for her affection or her approval. I'm the adult now, and I am following her wishes in being responsible for her. This was her choice. My priority is ensuring her health, safety and welfare. The goal is to maintain her quality of life, and part of quality is maintaining the ability to respect others and maintain good manners. Her mind is deteriorating and that's taking her socialization. To maintain what she has, we have to reinforce those lessons, the same way parents who are socializing children have to reinforce. I recall being a small child and snapping at my mother and grandmother, or having tantrums. They didn't stop loving me because I was acting out. I am not going to stop caring for her because she's acting out. It's not personal, it's just a manifestation of frustration and pain.
And yes, it's okay to turn your back, walk away or distract. It's okay to say, "I'm not doing this with you," and "we do not speak to people like that in my house," or, "back down, sarge, I'm a volunteer and I outrank you." Speak your relative's language, even if it feels unnatural. It's even okay to say, on a bad day, "Fine. Here's the phone, here's the phone book open to assisted living facilities. Feel free to make your own arrangements if you can't treat me with respect." At issue is a power imbalance -- your elder has at least 40 years of experience being the adult and in control, and the memory of being in charge of you. You have at least 20 years of being an adult and in control, and the memory of being in charge of yourself. That relationship now has to be renegotiated, and by setting boundaries, you're setting guard rails for the new relationship.
(Also, loud music on headphones and cussing when alone in the car is incredibly therapeutic.)
gblady
(3,541 posts)I earn my living as a private Care Partner....and serving elders is a passion for me.
Also have done a ton of volunteer work; Alz. Assoc support group facilitator, Hospice respite care, LTC Ombudsman, currently
serve on the board of directors of a local volunteer caregiver nonprofit and co-founded a networking group of independent caregivers.
Absolutely passionate about the progressive movement in aging, led, in part, by Dr. Bill Thomas....
wickerwoman
(5,662 posts)Habibi
(3,596 posts)Do we need to petition the admins?
politicat
(9,808 posts)There was some interest, so next up is to request.
Thanks for the reminder. (Sometimes life gets hectic, ya know? )
crazylikafox
(2,738 posts)I've taken in my 96 year old mother with dementia. I'm finding it very difficult & would welcome a safe place to vent & discuss.
politicat
(9,808 posts)I can't say it gets easier or better, but somehow, racking up the experience points of doing it does make it less... Aggravating after a while.
And yeah -- sometimes venting is the thing that gets me through, too.
hrmjustin
(71,265 posts)virgdem
(2,119 posts)GreenPartyVoter
(72,377 posts)PasadenaTrudy
(3,998 posts)I've lost both of my parents but I do have experience navigating the social services, long term care ins. stuff. I also have a friend who is the f/t caregiver for his mother with dementia.
MADem
(135,425 posts)I've lived my entire life, off and on pretty much, in a multi-generational household. Haven't reached the top rung yet, but I'm getting there!
NYC_SKP
(68,644 posts)People out there need advice!
Thanks!
flamingdem
(39,303 posts)I will participate.
mia
(8,356 posts)Thank you for the idea. Both of my parents are in an assisted living facility.