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I also am disillusioned but with family members who seem to not have learned what community or civics means. I make it a point every day to get out of my own head and open myself up to the world around me and the people in it. I know people who are so wrapped up in themselves that they haven't a clue about the lives of others. Worse yet, they don't care.
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Reply to NYDaughterInLaw
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I don't know the answer, but I know people are going to have to do something. Right now a family in the USA has two choices -- 1) expensive long-term care that most can't afford for more than 1-3 years, or 2) one child that donates time with little family or community support. I know other countries have similar problems, but probably not as extreme as in the USA, which is a country of extreme capitalism.

I love it when I talk to someone about high costs of elder care and I get talk about how much the employees cost and how the companies have to make a profit. I realize that if you train people to think that way, then there's not much you can't get by with.
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Reply to JessieBelle
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I would not be surprised if ruthless politicians and extreme capitalists are plotting to kill off half the population by just doing nothing to fix the very real problems an aging population faces. And no, I wasn't always this cynical.
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Reply to NYDaughterInLaw
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What about medicaid as an option, jessie?

I agree with you that caregivers need to develop a life outside of caregiving, not that that is always easy. Even a few hours a week immersed in something else is good for you and helps you not to define your life only as a care giver.
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Reply to golden23
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The new health bill if it passes has huge cutbacks on Medicaid. These cuts will probably hit the poor states hardest, since the states won't have as much money to supplement Medicaid.
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Reply to JessieBelle
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JessieBelle, I agree there are some greedy bastards running care groups - or "care" groups as I mentally call them - in fact I met one when we were selling my mother's house: he put in a cheeky cash offer and my mother had one of her finer moments telling him where he could stick it. I was especially glad she did because he'd been so nauseatingly pleased with himself about how commercial his approach was when we'd chatted about his business. Vile man.

Anyway. The other side of the coin, though, is that every time the government (any government) decides to get excitable about care standards it costs money. Over here, just for example, they decreed there would be no shared bedrooms. Residents were no more to be crammed into accommodation and denied dignity and privacy. Cue lots of pious self-congratulation from the G&G (great and good).

Well, now. For one thing, being alone in a strange new place does not suit everyone. Some people - I stress the some - do better if they have a room-mate because, as Piglet says, "it's much friendlier with two." Surely the ideal is to offer a choice? Not any more!

And for another, can you imagine the rebuilding needed, and the horrible Lego annexes stuck on to fine old stately houses to expand the number of rooms just to continue the business - and what did that cost?

For their next trick, they laid down a minimum width for all doorways to ensure compliance with disability discrimination legislation. I'm all for equal access, but some of these homes are in listed buildings - widening a doorway in an 18th century house is not something you can just call in your local handyman for. Who paid for that?

Criminal records screening for anyone employed by or volunteering at the facility - quite right, but who's paying?

Minimum training standards backed by formal recognised qualifications - again, not something you'd argue against, but it's not free.

Also, with those last two, they don't actually help much. You can be a complete bitch and unsuited to the care vocation and still be a long way short of a criminal record. Similarly, those minimum standards are pretty bloody basic - and they don't measure attitude in practice. I wouldn't even mind that so much if the people announcing measures like these weren't so smug about them and apparently so unaware of their very obvious limitations.

I don't know what the answer is - I fantasise about an undercover inspection force doing ninja-style surveillance - but I wish there was a lot more cost:benefit analysis going on.
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Reply to Countrymouse
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The vast majority of politicians are lawyers or "business" people. And they cannot and will not fix health care, infrastructure, or the economy. They will "fix" the system for their own benefit. Families, neighborhoods and entire communities must come together to stand up to these sociopaths and put them under ninja-style surveillance. But who has the time? They've designed "the system" to be so cumbersome and difficult to navigate that many give up and those who do figure it out are exhausted.
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Reply to NYDaughterInLaw
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I took my mother into my home because she blew all her money on stupid things and when dementia set-in she had no financial resources to pay for care. My number 1 complaint is that she would sit in her room in MY house on the phone I pay for and talk behind my back to my sisters after having me do her bidding with them when she moved into my house. They entertained her and would cover for her when I confront them about what I heard her say. I am glad to say after 4 loooonnnggg years she is now in a nursing home and I finally have my life back and have NOTHING to do with my sisters. To every caregiver hanging by a thread..do not loose hope....hang in there...take care of yourself so you have something left when you get your freedom back.... I am heading to Italy in the Fall and cannot wait!
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Reply to AlwaysSunny
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I am a caregiver of to my husband of nearly 51 years and he has Alzheimer's. I do feel sorry for myself when it seems that it is always all about him, especially in his eyes but then I remember that he is in a different world than I am in and he cannot help his self-centeredness. It is very sad and at time extremely difficult. What I find hardest to deal with is that the love of my life is not with me in the same manner he was for the first 45 years of our marriage. I am lonely and I so miss the man that he once was.
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Reply to Readingescape
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I'm so sorry, Readingescape. Your situation really is terribly sad. Are you able to get respite care for your husband so that you can have some proper, regular time to yourself? (and not just for reading!)
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Reply to Countrymouse
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No pay.and loss of enjoyment of life.
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Reply to Bummerlife
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Having to be the bad guy is what bothers me. I absolutely need to lay down boundries and my hubby either doesn't get it or doesn't care. His gram has gained weight her bp is normal(it had been so low some couldn't even get a reading!) And she had been approved for shots for her bones but I'ma jerk for laying down "rules" about the dogs tht have not only caused her to fall and break her wrist but lose weight in the past(she has brain damage causing dementia plus being g an alcoholic for 40 yrs and God knows how many falls over those yrs smh) I have made alot of headway (on my own while he's at work) but as soon. As he walks in the door she's bellowing about her dogs her dogs and he and I have on occasion gotten into arguments over it too just give her this n that well I'm sorry if I came from a poor family and it drives me nuts to give ALL OF OUR LEFTOVERS TO HER DOGS let lone b ok with her feeding them an ENTIRE steak to make matters worse beef gives these jerks diarrhea. And if u kno demetia u kno they can get physical and this is a hot button issue with her so how often do u think she's called me a b*tch or whore?lol more than I'd tolerate from any ableminded person for sure!!!Who do u think scrapes it off the carpet then scrubs it?? Along with the bottom of gma feet like I did yesterday because she did not realize she stepped in it at 2am(taking the dogs out) walks thru the entire house?!?!?!?!?!omg I can feel the grey hair coming in faster I better shut up but this alone is enuf to drive me Looney some days!!!
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Reply to INEEDALIFE80
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No apprieciation..or help from my family.
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Reply to Bummerlife
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My patient is my HUSBAND! !! I love him dearly, but it doesn't feel like he's my husband anymore! He does nasty spiteful things daily.I could just scream!!!
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Reply to Pattyblu1
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Being a container for their rage.
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Reply to anonymous570188
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Pattyblu1, me too for different reasons. My husband does not want me out of his sight, he won't let anyone else do anything for him. I live in a rather isolated place . I go out to the pasture and just let it rip !! Do what you need to for yourself.
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Reply to Sunflower17
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I have to agree with almost everyone, the agitation and assertion, the plain nastiness my brother demonstrates with everyone, not just me, when people help him, and he so needs it these days. I must warn everyone, and I do, honesty is always the best policy. On first meeting him, you wouldn't see it or think it, he demonstrates a kindness and sweetness attitude, docile really. I am always concerned that no one believes me, worried that someone, him or an assistant will get hurt. Just yesterday he went to bite me, at times he is holding sputum in his mouth, so while showering I attempted to tell him to spit it out, useless; demonstrated what to do by doing it, thinking visual was the way to go, wrong again; then tried placing my finger gently on his lips while telling him to open them, really wrong, he did open them and bit me in the process, fast like a snake. I have noticed he's quick, strong, unpredictable. My attempts to find someone for a.m. care have been a no win as well, don't know if I should even consider it anymore, due to his aggressiveness, yet I know I need it. Then I say to myself maybe it is time, but am still concerned about what is ahead for him, knowing his behavior will work against him. It's hard to let go when you care and love unconditionally, it just is. Bless Caregivers
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Reply to Blessings4Ever
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Since mom died, 20 years ago, my husband and I have helped dad with the care of his property. I cleaned house (with our kids helping me) and then we all did yard work too. We are tired and I tell dad I want to hire someone to do the work. He says "NO!" He doesn't want strangers coming on his property. (He has so much "junk" that he's afraid someone will steal; and to be honest people have stolen but he left it sitting out." So, he says " You don't have to do it (work). I will do it!! I never asked you to do anything." Which is true. He doesn't ask. I just have everyone do it because it needed to be done and he has other people who lived on his property. You can't just not mow or clean up because it is unsafe and ugly and people don't want to live there when it looks like a junk yard (2 yrs ago I decided, "ok, we won't mow" and he got a letter from the county saying "Clean up your property or we will." Well, THAT worked out well. We just had 2' of weeks to cut instead of 6". So, the inability to say THANK YOU. (now he doesn't have the ability to do the work because he hasn't the memory to do small tasks and he doesn't have the stamina)
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Reply to Janny57
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It is a multitude of things from looking after her day and night, only caring about her own feelings and getting mad at me when she is confused about things caring about her but not getting paid and I am just a neighbor because she has no relatives.
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Reply to Yankeetalker
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I really enjoy my brother rewriting history. He tells me I wouldn't be struggling so badly if I had only accepted the "HUGE" amount of help he offered. I have to remind him that I didn't need help, Dad did, and he had Dad blocked in his phone so he couldn't be reached. I remind him he was warned for elder abuse and not allowed at the facility, and that the CNA's were afraid he was going to hit either Dad or one of them.
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Reply to didntknow
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I'm fairly new to this, but my current frustrations stem from communication. Because we both work full-time currently, there are many people in and out of the house helping grandma get adjusted, and I'd like to know how to help. Grandma is stubborn and attempts everything herself, often making situations worse. I'm having trouble balancing my personal want for efficiency and her needs for independance.
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Reply to Tangent
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Tangent, please remind yourself that you can only do what you can do. Grandmas "stubbornness" can be one of her best traits! If you read the posts here, you'll quickly see that many of us complain that our elders give up too easily & want someone else to do everything for them ALL THE TIME. Allow Grandma to do what she can because most likely the day will come when you'll wish she would. If she falls or gets injured somehow, you can rest assured you did your best for her. I know that's a hard thing to comprehend right now but it will solidify in your mind later on. Also, in my own situation, we found keeping a notebook in a specific spot in the house helpful. When anyone came by, they'd note what they did (even if just sat & talked to her), how they found her condition to be (mental too), the home, etc.
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Reply to cr0105
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Tangent, cr0105 is so right on! Couldn't agree more with letting your Grandma do what she can for as long as she can. Experienced & knowledgeable help should be encouraging her & praising her for tasks well done. They should know when to intervene & how to, so to avoid any agitation or frustration for her. Some aides will take it upon themselves to do everything, it may be easier & does save time, but if your loved one is still wanting to hold on to control & independence the aide may run into difficulties. My brother could get into a tizzy if an aide kindly said, "I'm here to help you," him wanting that control. It would be downhill from there. The time will come when more things will have to be done for your grandma, that stubborn streak may dimmer, compliancy might take over, sad to see. We all like things to stay the same, but, a "new normal" seems to appear with caregiving. Keep things easy for you, continue to love & care. Blessings 🌸
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Reply to Blessings4Ever
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Having all my siblings have rich so called companys and giant houses. Flaunt thier money around. But dont at all help others. My mother was a single parent and gave everything to her kids..even if they at the time wanted clothing of brands that she couldnt afford etc. I do find it amazing why Im the only one..from 6 kids that care.

Not having someone to give you a break..to take a basic full shower to even walk down 5 streets to go to the laundry mat. Can some one watch mom? Grocery stores dont like me to bring her in..because of her fits..talking out loud etc.
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Reply to Char12
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Char12, it sounds like things are really rough for you! I myself have a huge family but the caring of mom fell upon me. One thing I have learned and STILL have to be reminded of is to ASK for help.
I think you will find that some WILL help if asked directly, & some will whine or make excuses,... but keep working down the list!! and you MIGHT come to somebody who will pitch in. Try approaching it in a different way sometimes. Make it about what is best for mom, not you...they might accept that better..?
May I ask, what birth order are you? Youngest, oldest, middle, only daughter?
 Is Mom under a Dr.'s care? What diagnoses?
 If family is of no help, have you tried friends, neighbors? I hope you can figure out a way to get a break. We all need them!
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Reply to cr0105
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What bothers me so much is that my mother is oblivious. I know it's her disease. If this was cancer , something like that or worse, I would have some time frame. From what I've read. Dementia can last a decade or more. It's just so hard watching some ones mind disappear and then a day later, they seem fine. Also the complete dependence on me for everything. Zero family help.
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Reply to Erinm60
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There is more than one thing about care giving that bothers me. I think the worst thing is knowing that mom cannot seem to have empathy for me or for what caring for her requires of me and her granddaughter.
I also often realize that the chance at the relationship I often dreamed of having with her is slipping away, and that it will now never happen.
Then, I realize that my own dreams and aspirations are fading as well, as I put my mothers needs before my own although she never did the same for me. She was mostly oblivious to my life, my needs, etc., and she stayed with a monster that regularly abused all of us and that was clinically insane. He would laugh loudly on a whim, with others in the room or not, and he would often be sadistic during these episodes. Sadly, he never got help and died at 37 years old. She then had a breakdown and was admitted to the mental hospital. My sister and I had already moved out of state to live with our grandparents. Mom, at first, was catatonic, and then gradually came back somewhat, to where she has been for fifty or so years. She has no memory of most of that time, but I do. She will often talk about him and how he cared for us. It is so tough for me to then be silent, so in a nice way, I remind her that he was not caring at all.
Now, I think I mostly just miss having my life back, and doing what I want to do.
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Reply to sybnann
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It's like taking on different personalities for me. For 2 wks this May I pretty much spent the whole time "playing" in my garden. I was one relaxed, happy, sun soaked, dirty lady! Did call mom alot at AL, she's a joy to my heart...dad's there too (divorced) but let the girls at AL worry about him, he's toxic to me mentally and physically!!
Felt  like the old me those two weeks....
Yesterday, gorgeous out....but "he" was nagging at my brain ALL day....I was a total miserable B***H!!!

As of now, I don't wish either of them to die, especially my mom, but I do have to admit I long to be normal again. Our daughter is having our first grandbaby in December and that's all I want to think about !! 😍
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Reply to Bella7
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The thing that bothers me the most is not even something that anyone else can fix. I have been a paid caregiver for many years and I realize that if you are in this job for money and recognition, you are barking up the wrong tree. I miss the way my previous client and her family would make you feel appreciated. My current client is.... well.... just not a nice person. Nothing is ever good enough and I'm sorry to say that it's not just the dementia. I have known her for years and she has always been difficult. If you are in this job for constant praise, you'll be sadly disappointed. I have learned to pat myself on the back when I deserve it.
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Reply to Thisishard
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Something else I don't like about caregiving for my mother is I feel like it's a Point-Counter Point episode anytime we talk. Almost everything I say, she'll take the opposite stance. It is a reflex with her, but it certainly gets tiring. I don't know how she got so contrary. It's rarely anything serious, but it is constant. I can say we don't need bread; she'll say we'll need it later. I'll say I'll do laundry Monday; she'll say I should to it today. I'll say her friend is very ill; she'll say she knew someone who lived fine with the same problem. I'll say her friend died yesterday; she'll say it was the day before. None of this is serious, but it is constant, like one-way verbal sparring. It makes me want to find a cliff to jump off of. I end up avoiding her because it is so tiring to try to talk.
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Reply to JessieBelle
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