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The worst part for me is lack of privacy. My mother makes it her business to park herself at our main kitchen table all day every day so “she can be where the action is”. Yup she said that. She does not give my family any time during the day to enjoy our home without her asking the same questions like a broken record. I just want her to spend. Few hours a day in her personal space (which is a large bedroom / mini apartment) that includes all the comforts of home. She refuses to do it…..so here we are.
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Countrymouse Jan 2022
Oh yes, snap! The presence at the kitchen table with the force field around her that makes it impossible to carry on normally. Been there. Boy that is stressful and so difficult to explain in a way that doesn't make her feel rejected. Possibly on account of the fact that she IS being rejected! - only not unreasonably so.
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My worst thing is feeling like I am call 24/7!!!!!!

No time off ever even though mom lives in her senior apartment.

Afraid to silence phone to rest.

Seniors taking care of older seniors is hard.
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DrivinBatty Jan 2022
I. Agree, I know mom does ask for things at the worst possible times when I am busy or trying g to work with our pastor or my cooks to or get our fur babies water or food but she does and I become so... Angry then I feel so bad. She is so sweet she knows when I am busy not to bother me unless it is absolutely important. What is wrong with me? I have the sweetest mom on earth! I feel so guilty and like such a bad daughter. She has heart failer, hole in the heart, anyrusm, lung congestion where she can't breath with out oxygen. I feel so sorry for her and love her so much. She is the best. And I get mad at her I feel so ashamed. Thank u for listening, I hope you don't think bad of me please. I am not a bad person just tired, angered this happen to her.
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Everything bothers me today.
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Finally realizing that it will never end. My health is deteriorating & I now believe she'll outlive me.
I want a day off. Just one. A full day off. One day.
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Trish1750 Jan 2022
I don't what state you are in but depending on the insurance you may be able to get respite care.When you are the fulltime caregiver insurances pay to have the client in a facility for 1 week either 1-2x a year to allow caregiver time for some relief.Look on her insurance and call to find out.Also you could hire a companion(if finances allow) a couple times a week even for 2 hrs each so you can go to lunch ,even a movie or sit in the darn car alone, I wish you the best,It sure isn't easy.
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I'm a retired RN & I almost wish my dad WOULD be irritable and stubborn. It would make it so much easier to step back. But, along with his vascular dementia, he is passive and pitiful & thinks if it wasn't for me, he wouldn't know what he would do. This all sounds good until you realize that this puts a huge burden on the me when making decisions. He is 95 and has always been told what to do - by his parents, the military, and my mom. My mom spoiled him & never let him do small things that he could certainly accomplish such as doing a load of laundry, fixing a light meal, running the vacuum, etc. So he's been very dependent for a long time.
When I visit him at the memory care facility, he keeps asking me what should he do. About what, I ask. No answer. He asks if he should take a bath, how he should dress for a doctor visit, how he should eat, etc. He never remembers my answers & it all starts again when I visit.
He has developed peripheral artery disease in his left foot, for which he had an angiogram with interventions last week. I don't think his foot will get better so I think we'll be looking at an amputation. This scares the daylights out of me since he will have no idea why, if it comes to that. And it will further increase his passivity & dependence.
I feel sorry for him & am anxious as there seems to be no good options at this point. Most people would say "don't go looking for trouble", but I feel like I have to look ahead & be prepared for the worst. This is what bothers me the most about caregiving - the unknown & being caught off guard when calamities happen, which makes for a very anxious life.
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LightnLife Feb 2022
Prayers and positive thoughts~ This sounds very scary for both of you.
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The narcissism. The fight instigating. The self-pity and performances (Performances being a fabricated health crisis or some other emergency that they make happen to ruin a special event or to prevent their caregiver from taking part in it. Performances also given if the senior isn't the center of attention). The 'showtiming' for healthcare professionals and company. They're actively dying 24 hours a day for their caregivers. The hoard of useless garbage and never allowing anything to be thrown away. The "stubbornness" that crosses over into absurd and asinine nonsense. The not ever remembering anything decent or good that you ever did one day in your life. Yet they remember every fault, mistake, and bad moment you ever had then act hurt when you don't want to take that stroll down Memory Lane with them. The constant disposal and cleaning up of piss and sh*t and a home that always stinks of both. Zero privacy and no respect for any kind of boundaries. The martyrdom of how they don't want to be a burden to their family. Yet they will make every day of their family caregivers lives a Titanic-sized burden because they don't want their family to help take care of them. They want their family to become slaves to them and the elder will act as slave-master.
I think this is what most bothers me about caregiving.
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I felt tricked by the system, then trapped in a nightmare. I said from the beginning I could stay only one month, to help get things in order. No one listened or helped me. My friend ended up in the hospital, and the only way I got a nursing home bed was by refusing to take him back home. Meanwhile, I was a nervous wreck and even had a car accident because my nerves were shot. I DID NOT VOLUNTEER to do this long term, but no one heard me. They just wanted me to stay out of guilt, etc. a nightmare , horror movie
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I had to pay thousands of my mothers money to a bank who refused to acknowledge my POA in order to get her bank statements for Medicaid. Put that on top of dealing with her dementia and you you have to wonder how you make it through each day.
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It's even hard for trained professionals to deal with sick old people. It's a million times harder for untrained relatives who do not even get paid.
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I gave up caring about her a year ago.
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Monikalabadi Feb 2022
good for you
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You know what bothers me about caregiving is my patient's family. Just to give you a background... I'm caregiving for my cousin's husband's mother. So, I'm related to her by marriage. I actually enjoy taking care of her because she's funny and has such a colorful sense of humor -- but there are those times where she has episodes derived from dementia as well as her depression which has significantly gotten worse since her husband passed. I have used this website as well as Teepa Snow's way to make sure that I'm communicating with her as calmly as possible to help her through her difficulties and to make her feel unashamed when she's doing a lot of weird things like pulling frozen food out of the fridge and putting it in her shower. Her son (my cousin's husband) only visits twice a month and not deeply involved in the day to day caring of his mother. He oversees all her financials -- BUT THAT IS IT. So when I implement things like putting child locks on the refrigerator, he always sounds like I'm being mean to his mother or when I put a lock on the side gate because she wandered out one day. Am I wrong for doing this? I question this because at the end of the day, my goal is to keep his mother safe. It is quite frustrating because I would want those solutions in place if someone was looking after my own mother.
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Trish1750 Jan 2022
you sound wonderful.You are doing all the right things.I would only suggest that when you need to make changes to send him an email(so it is documented) and re affirm it is for her safety and if he doesn't agree then he needs to come up with a different safe plan of care.
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Simply the back and forth with my mom. Her not being well..and having dementia she doesn't understand eating right.. Fluids and sleep.. She says 'Imma do what I want to do' So at this stage I just have to keep asking and coaxing her to do things.. But my patience I think is increasing.. That's for sure👍🏾
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LightnLife Feb 2022
All that... "You can't tell me what to do." or "Who do you think you are?" "I know what I'm doing." or "I am doing just fine." or "If you take my keys I will....." oh, the suicidal comments and the OCD/ODDseeming behavior. I'm a trained practitioner, yet I can't see the value in taking her to counseling. Will she recall the coping strategies? Not likely. Will she recall why she's there? Not likely. She says she doesn't need help and if she did, she certainly wouldn't take it from me. I didn't offer as that would be unethical. It is pure crazy making. This doesn't make any sense why there isn't more accessible help out there with so many folks suffering with this terrible disease.
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For me the worst part of caregiving is family not bothering to ask me how I am holding up. It’s not getting a simple call just to chat that makes things so difficult. It’s all about my mother and I’m their employee.
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Ariadnee Dec 2021
Yep. That was so true the first stint of caregiving-which was years ago. I thought by now, on my second caregiving adventure, that would have changed. Silly me-of course not.
I hope you are holding up as well as can be expected. Hope that if/when you read this, you had a good day. That you're not feeling too overwhelmed and able to keep going on as a caregiver. I also hope that you will know when to step back from caregiving and let the pros step in to do their work. As we often read here, it is nearly 99% impossible for one person to do it all. One word I hate is "Multi-tasking"-that should be a swear word, 'cause the clueless folks out there not doing caregiving think that....you can: take a loved one to the doctor's office, make sure the right meds are at the pharmacy and pick them up, maybe another doctor's appointment, make a meal, clean that one part of the house where the dust bunnies are openly mocking you with their antics, grocery shop, take care of household pets, chat with your loved one-just to make sure they're not declining too much-or yell at your loved one-'cause somehow they now blame you for everything wrong in the world and it's all your fault, and then your phone rings and another doctor's office would like a word with you about stuff, you think you're loosing your mind-nope-it's "only stress"....annddd on and on....
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My time is never my own. I feel like it belongs to everyone but me. I get 24 hour days like everyone else, but zero downtime. I feel like everyone’s time is more important than mine.
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Sadinroanokeva Jan 2022
I am so sorry. I get this. Everyone has a life unless you are the caregiver. Never truly a day off.
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Wow, caught me at this particular annoying time of day.....DINNERS!
Watch me cook, pick, prod at plate, pour 3 tablespoons of salt on (it's fake salt) without tasting, where my "linen "napkin, meal is now toooo salty, do you have any salmon, where's the cheesecake, I'm not hungry. ..
AHHHHHH
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Hardest part of being the caretaker of my husband with Dementia is watching him slowly going away. I miss the smart, strong man he once was. They sure are not kidding when they call this "The Long Goodbye"! However, a job to be done and I shall do it the best I can!
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Feeling guilty all the time. It takes so much patience to care for both of my parents, age 94, and when I show frustration, I feel guilty about it. I'm in my 7th year and feel I have put my own family on the back burner.
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missfits Dec 2021
I feel the same. I have had to raise my sons from toddlers to elementary school all while having this 85 year old man look over my shoulder and interrupt every Golden family moment. He thinks he is the most important person in this house and after 7 years I am just so done. Wish he would go to a nursing home already.
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What bothers me most?

The lack of me. Not knowing who I am anymore, what I used to like/love before I got into THIS. Not being able to consider, acknowledge and appreciate my very own wishes, talents and skills anymore. Being a human mould to somebody else's needs and fears, not knowing when it will end.
That my own 16 year old son suffers from me not being there for him when he needs me. I feel I am giving all my energy to the wrong direction: to the past (my parents) who will die soon instead of the future (my son) who will blossom. This elderly care lasting for years & years feels wrong, perverted and unnatural. It bothers me that with 50+ years I inhabit more the role of a daughter than I inhabit the role of a mother.
Sometimes I feel like Charon setting dying folks over the river Styx just that it is not a river but some never ending ocean. I am so exhausted.
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Ariadnee Nov 2021
Yep. This is the hard part. I'd suggest journaling about it. If at all possible, is respite care/support an option?
I rather think you are setting a really good example for your son, of being a care giver. Can the two of you have a weekly five or ten minute chat? No distractions, just a quiet couple of minutes to talk.
Since you've refernced Charon, perhaps re-read a good translation of Homer's Odyssey-dude was trying for 20 years to get home. Greeks knew a thing or two about persistance.
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This is the second stint for me as a caregiver. Family members, friends, think you're a professional nurse, doctor, problem solver, errand runner, expert on the illness you're dealing with (cancer first time, now dementia), doctors who look right through you in the exam room while you're carefully detailing everything that the person you're caring for has gone through (falling, outbursts, anger issues), but at least I spoke up. They do not ever intimidate me. Just feel like a tool sometimes. Like this second round of caregiving was going to be better, that I'd already done it and that the obstacles would not still be here. Why, yes, yes they are. Respite care? Able to reach a health care proffessional quickly? Isolation? A personal life? The medical proffession really needs to wake up to all of us on the front lines of caregiving. Our collective efforts save them billions of dollars every year, because most of us are family/friends doing this and most of us are unpaid. Hospitals must offer free courses, seminars and support groups for us. This has got to change.
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UnKraut68 Nov 2021
"Our collective efforts save them billions of dollars every year, because most of us are family/friends doing this and most of us are unpaid."

I hear you, and 90% of these family helpers are unpaid women. This is a scandal.
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The thing that bothers me the most about caregiving is the distance it has put between me and my own interests and needs. I'm 33 and haven't gotten laid in 5 months (crass, I know) It puts so much distance between my boyfriend and me, and I can tell he's getting tired of it. I just finished college, which took me a long time, because I had mental health issues in my early 20s and dropped out. Once I went back to finish my degree, it was just a series of hospitalizations I had to be present for---heart valve replacements, burst aneurysm, slow death on a vent (6 days before lockdown my grandmother died, and 3 days before lockdown my boyfriend's best friend died. I've been dealing with the decline of my grandparents since 2018. I was supposed to be working on a grad school portfolio and re-entering the job scape right now---this was supposed to be "my year". Unfortunately, all my grandparents' children are incompetent to help--one is incarcerated, the other has a restraining order against them for attacking my grandpa with a hammer, and my mother is a severe alcoholic and general vagrant.

Sometimes I think about the immense energy and effort I have put into their care since I was 29, and now I'm beginning to wonder what they did to have their kids turn out this poorly. I also have a little bitterness (seriously just a tad) towards the expectations older men have of being cared for. So few of them have ever been tasked to take care of someone intimately, and quite a large percentage leave their terminally sick wives. Why do they deserve this much when they return so little to this type of work?

My grandfather is my favorite relative and I will be here for it all---I'm POA and Executrix (which puts me in a mild paranoia at all times that his children will come after me or my kneecaps lol). Right now I am debating how much money we blow through for home care. When the savings run out, I feel like borrowing against the house for 30 percent of its value is a good move---it leaves plenty for Medicaid to want to grab up if it comes to a serious drain of all assets.

My life before this was free-spirited, and I made it that way because my childhood was awful. I cherish the smallest things right now when I'm able to be in my home. I feel guilty for spending so much on home health aides (he just came out of rehab for a bad spine infection), but then again, maybe he should have planned better. It is not my fault his children are awful---I deserve at least half of my week. I will be contributing from savings when I really need a vacation and he goes into a quick respite. Also the confusion on just how to proceed (is going on and off hospice a good option for lower-cost respite relief? If I take the equity, that adds another 50K to his current 2400 SS and pension, plus the savings. We're technically blue-collar and poor by contemporary standards, but his cost of living otherwise is REALLY low for a big city.

I just hate being the only one.
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z3nf0x Nov 2021
I am 29 and could really relate to your post. Thank you for sharing.
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Oh Liz, I am so sorry. I lost my grandmother the same way and it is devastating for it to happen so quickly. She was fine Friday morning and Monday morning was an entirely different person.

I pray that he recovers and he comes back.

My grandmother lived in a perpetual decline for over a decade, unfortunately her familial memories were gone within months. She became a body with nobody home.

I am not trying to be a downer, I think we should know what could happen and believe otherwise. I'll believe with you that he will recover.

May The Lord move on the scene and touch your dads body and mind.
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I feel as though I’ve been robbed of my loving father. He had a stroke, and woke up a completely different person. When he’s not sobbing his heart out, he’s angry and aggressive, and lashing out. He would be appalled at how he is now, and I’m caring for my dad, but my dad is no longer there. The doctor’s say his brain might heal. He might come back. Those are two awfully big “mights” when I barely even recognize the man who sometimes doesn’t even know who I am and looks at me with mistrust.

I hate that this happened to him. I hate that this is our life now. I hate that everything we had is gone.
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My biggest issues were no sleep and absolutely no me time at all. Couldn’t even take a 10 min. shower without being called or banging on the door. My husband has Parkinson’s and my son has Kabuki syndrome. He is 27 but remains at about a 2 yr level. My husband is now in a nursing home due to falling issues, dementia and hallucinations. When he was home, my son would try and pull the walker from him when he was trying to walk. He just wanted him to sit down at all times. My husband would call me every 2-5 min to help him with something (get Nicky away from him, turn the channel on the tv, get him a drink etc ). They are both in diapers and need help bathing and all daily living skills. It is better now that he is in a home but still have my son who is 100% dependent on someone. I have a caregiver for him at 40 hrs a week so that helps when I go to work, but still can’t go anywhere on my own without someone staying with him at night. I either have to take him with me or don’t go anywhere. Gotta pay someone to watch him so I can visit my husband in the nursing home 1x a week. I am far from rich so money is an issue. My mom now has something going on like dementia which was ruled out but she still needs assistance with banking, phone calls, appts. She can’t speak properly and people have no idea what she’s talking about so you kind of have to decipher her words. Still trying to find out what’s wrong. I feel like I’m being pulled in every direction and there’s no way out. I’m the only child and we have no other family. 🥺
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Tynagh Nov 2021
Koretta, here is a virtual hug. I don't even know where to begin. Once your mom is diagnosed or maybe before, it may be time for placing her in a nursing home. You can't possibly care for her and your son. It's not physically possible. Is there a chance, because your son is disabled that you could get more state subsidized care for him? You need at least an houe or two for you a week.
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My mom's hearing is bad and then the dementia scrambles it even worse. and then she blames ME for mumbling or not speaking clearly.
What's worse is I used to have a speech impediment and had to go to speech therapy for YEARS growing up. In adulthood, I speak clearly and with well trained diction. But, every time she mishears, she blames me and it is a constant flash back to my childhood of people not being able to understand me.
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NightHeron Dec 2021
If she's in a bad mood, which is frequently, mine assumes that I've said something insulting to her. And then it's a game of trying to reassure her in an upbeat sounding way that isn't going to aggravate her further.

"Next time sister visits she's going to fly."
"Oh, you wish I would die?? Is that what you said??"
"No, no, Mom ... um ... sister is visiting soon, so that will be nice!"
"Lice? Did you just tell me I have lice??"

Good grief.
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She is probably on the mental capacity of a one year old. She’s not doing this on purpose…. Her brain is broken. She has no understanding about what’s going on around her. This is very hard on family members… I know, I’m living it as well. I myself had a TIA… I thought I was having a stroke. I asked my husband to call 911. He couldn’t do it. I managed to call myself and he was mad at me when an ambulance showed up. His comment” I hope you’re happy your FRIENDS are here”. This is NOT him but he’s no longer able to piece together danger or needs of others.
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She has Alzheimer's. She's not in her right mind. She's not acting that way on purpose. 😟
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It feels like my life is over
Most friends can't care
It happened almost overnight
I can't keep a normal job
I never got along with dad
He's just as arrogant and dismissive as before
I am depressed and overwhelmed
If I leave this falls on my mother I can't ever do that
I can't do this.
Is this now my life.
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Noudont Dec 2021
Hmmm. Perception is key..but outcome is the magic..everyone . All beings...have their reality ..example..I will not exist if I'm not connected to/with another for a period of 63 hours. Why...? Because of a n instinctual connection-chemical..and more..once that connection is no validation the world (mine) is different than yours..and here is the simple example of the infinity of the many worlds
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My family and their lack of respect and white-washing over the work I've done to help my aunt.

Pretty sure my aunt is a narcissist and has probably spent most of my life poisoning family against me but you'd think they would be smart enough to figure that out by now.
Like many people on this board I am a caretaker to an older relative with dementia (in my case it is my aunt who has no spouse/kids.) I don't live with her, I'm her POA and she makes this almost a full time job - she has a constant need for attention, a magnetic ability to draw all kinds of drama to herself, she absorbs my time and anyone else she can draw in. I have made considerable sacrifices (financially, personal time and aspirations) to take care of someone who is by nature manipulative, demanding, and pretty mean but sprinkled occasionally with some nice moments.

Upside is I'll never receive validation and that was a clarifying moment for me.
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BurntCaregiver Oct 2021
You don't have to do it and your reasons for taking care of your aunt are you own.
In families the person who served as the family scapegoat that everyone spoke ill of and blamed everything that ever went wrong in the world on, is almost always the one who ends up being a family caregiver.
No, you will never receive validation from your aunt or any other family member. You will always be devalued by them and your help will always be white-washed over and taken for granted. You're not alone. This is exactly how it is for so many of us.
I hope at least you are getting decent financial compensation for doing so much for your aunt. If you're not, then drop her like a bad habit.
Tell her straight to either remove you as her POA or you will go down to the probate court and have them legally release you from responsibility. Then walk away. If your family has a problem with this decision, they can step up and take care of the aunt.
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Having to hire and deal with the caregivers. I have never liked being a supervisor and one of the caregivers I hired tends to need close supervision. I hate doing that.
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BurntCaregiver Oct 2021
The caregiver who needs close supervision also needs to be taken off a case.
Find a different caregiver. If you hire privately and pay decent wages, you'll get a quality caregiver with excellent references.
If your help is through an agency, chances are you'll always have to keep a close eye on them. Agency help gets very low pay (usually minimum or a few cents above) and they will hire pretty much anyone. Don't be fooled by marketing and care agencies claiming their homecare aides are all highly-trained, supervised, and have all kinds of client support from the agency if they need it. They get nothing. Always keep this in mind when hiring agency-employed homecare aides.
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I hate when I feel resentment. My mother is very grateful for my help both with her and with my father for the many years he was sick before he died. I know that I am lucky that she is not mean or unpleasant although she can be very stubborn for example fighting me about getting a safer bed. So when resentment comes up -- over a simple thing like having to sleep at her home for the next few weeks during recovery from a fall -- I am the one who feels ungrateful.
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