What is the one thing that bothers you the most about caregiving?

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What is the one thing that bothers you the most about caregiving?

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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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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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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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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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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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Being a container for their rage.

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Reply to anonymous570188

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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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No apprieciation..or help from my family.

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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 pay.and loss of enjoyment of life.

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Reply to Bummerlife

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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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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 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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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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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 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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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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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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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 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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Jesse, maybe we have to go back in time to some variation of the multi-generational model, kids today come out of school so burdened with debt they can't afford to be on their own, middle aged men and women are staying in the workforce past retirement age and our very old are living forever. If only we can figure out a way for each generation to support each other while still allowing some independence. (forming loose family units, but not necessarily blood family?) Gee, that sounds a lot like a Utopian commune LOL.

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Reply to cwillie

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It dawned on me today that the answer to caregiving is building a life outside of caregiving. Caregivers are going to have to do that now that the task can go on for 10-20 years. People have been elder caregivers throughout modern history, but it hasn't been for such long times. If lives are going to get longer, the role of the caregiver is also going to have to be redefined. No one can donate so much of their life.

I have really become disillusioned with the US. It seems like a few people want all the resources and look upon the ordinary people as parasites. The ordinary people pay proportionately more taxes, but then are told they need to stand alone and not depend on anything from the government. And people have come to accept this.

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Reply to JessieBelle

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Everything seems to come down to money. Old people who have money can afford to hang on for years or decades. Doctors undertake pharmaceutical heroics to keep patients around longer, which earns them money. Children with money can afford to hire help so they don't need to drastically alter their lives.

There's also the flip side, which is frontline healthcare workers who make hardly any money and get the worst jobs around.

So many resources are wasted on people who would have died a long time ago were it not for the marvels of modern medicine. And so many resources are withheld from people who just need a little bit of help to keep themselves sane and their heads above water. It makes me weary just thinking about it about what a mess we are in and how much worse it will get.

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Reply to NYDaughterInLaw

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What bothers me most is the futility of it all. My old life is gone. Mom & Dad's money is rapidly dwindling. Dad is a veg & Mom is miserable. I am very depressed. For what!? It will never get better. Only worse. Such a waste of time, energy, and money for all 3 of us.

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Reply to helennnn

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Loss of freedom in my own home.... only had a year of empty nest. All the pictures in my head of renewed honeymoon time gone.... no privacy in a large house. People thinking everything is theirs, have to hide treats that I buy for us because someone else finds them and when I go for them they are gone.
Someone around 24/7 or when we do get alone time it lasts for 5 minutes. Loss of privacy is number 1 with me.

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Reply to tgengine

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There are so many things that bother me. One of the big ones is the chaos. I can wash towels, but then find all the face cloths gone in no time. They are scattered about the tub and bathroom after being used to wipe her hands, her face, her other parts. Her bedroom and the living room look like a tornado struck. I can clean, but the boxes and tubes and garbage take over again by the next day. She NEEDS two boxes of tissues, 5 boxes of BandAids, all the OTC medications -- some way out of date -- statements from the bank, tubes of ointments, bottles of lotion, blankets, pillows. Everywhere!! Scattered over two rooms. I absolutely hate this house and what we have become. People used to call people like us white trash. I feel ashamed to live like this. If I say anything I get the This is MY house answer. My mother was always lazy when it comes to house work, but this is beyond that. No one should have to live like this. Sometimes I want to quit trying to keep the place straight, but it would drive me crazy to live in squalor.

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Reply to JessieBelle

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The thing that bothers me about caregiving is the wondering if I am doing all I can. I try to keep my mom clean, stomach filled, etc but I have a gnawing feeling I am missing something. I'm suppose to be maid, taxi driver, estate planner, and all the other duties. My sister is dead and my brother is a mooch. Yet here I sit feeling at a loss. My husband is a constant support to my mom and myself, but I can see him getting caregivers burnout. He is my main concern. Taking care of mom was something I knew I would do as my siblings would not ever interrupt their lives. I dislike how I feel though now that it is a reality instead of this dream of connecting with mom and showing her my love for her. Thanks for listening.

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Reply to Patticake2

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CarlaCB & Countrymouse such good points. Yes, what are we to do? We are fortunate to be making progress in keeping people well & healthy for a long time. It's a "feel good moment" when I meet people, 87, ambulatory, out & about. Hate to say it fellas, but I do notice women seem to "keep going" better & many are alone, usually widowed. Our country & government though do need to think of something for those who are not well, at any age, & need care. It should be the "best of the best" places as well, not "dumps" where you wouldn't leave Fido or Fluffy. If they didn't want to pay for these places, like they do for prisons, which are pretty nice, offering amenities, I guess there could be a tax each & everyone pays to have "beautiful" facilities with compassionate & knowledgeable personnel employed. We don't know if the need will be there & most don't want to feel like a burden to family, don't want to see $ exhausted, rightfully so. What if each day is lousy, what then? Could there be another legal document? We hate to think of this "stuff" but the "what ifs" can & do happen. There is a beginning & ending. Each day is a blessing, care & love. God Bless

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Reply to Blessings4Ever

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The one thing that bothers me the most about caregiving is the ungratefulness of the elder parent after spending 20 + hours a week caring for their medical as well as nonmedical needs. All my elder parent cares about is himself with his wants and needs. Excuse my language but he is a SELFISH SON OF A B*TCH. Although his primary doctor states he has Alzheimer's he still has some common sense. He has listed my older sister as power of attorney yet she does not do any hands on caregiving, does not know all of his doctor's names, or knows all of his medications. He states he trusts her with his money and handling the finances. If that is not a stab in the back I don't know what is. I do my best to help him with his health yet he is blind to the fact that my sister does not care about him that much. If I were him if one of my children cared for me in my old age more than others without any legitimate excuses from the other children, I would trust them more. But I told him to trust in GOD because GOD never lets you down even sometimes we thinks HE does but I think it is just our misunderstanding. But never trust in a person because sooner or later they will let you down.

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Reply to lalaland

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Carla, there is a change on the horizon - there will be more very elderly people, and "they" will be "us"!

I think the primary difficulty is perhaps that the alternative to people living long past their natural shelf life is... their not living so long. It's not an easy sell to an aging electorate, is it?

So assuming that the issue as a 75th birthday present of ice floes, tickets to Switzerland or whatever means becomes fashionable for our generation doesn't really take off as government policy, we're left with the same questions - only now harder to answer.

How much?
Who's paying?
Where will we find the workforce?

You're right, it is unsustainable, and you only have to add up to see that. So what is the well-managed, humane and ethical alternative?

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Reply to Countrymouse

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What is the one thing that bothers you the most about caregiving?

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