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sara321: Perhaps your mother can live in a managed care facility. You do not state in your post or your profile your mother's age or her health issues. It is IMPERATIVE that you take care of yourself, else you fall ill.
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sara321 Apr 2022
Thanks, I'll take care of myself. We'll keep my Mom at home. I'll find a better caregiver team. In a facility, it's the same - you (adult child) still advocate, help.
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Honestly, Yes. My situation is different and I believe you can read my situation somewhere on my profile. My mother is bipolar and after many breaks, I decided enough was enough. I too am in College and was chasing after her like a dog running in the street, literally. She was living homeless, doing whatever wherever after an idiot psychiatrist trusted her to manager her own medication, which is not possible for her. After forcing the court to step in, I finally got peace, and you may need to find something more permanent for your mother. I’m also in college, but I’m a pre med major and a phlebotomist 5 days a week. I will tell you, this sounds like she needs someone more experienced than just a home care agency (which I also worked for and know how spotty they are). She if you can enlist the help of social services as a crutch. Reach out to the agencies and tell them this just isn’t working, consider going private or hiring someone under contract. Be at of luck, you should totally be living your life but remember how special you are to be caring for your mother. Many times I wanted to just get ran over and quit dealing with it out of frustration; it takes a special person to care, child or not.

Hang in there!! Xoxo

-Kat
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sara321 Apr 2022
Take care! And Thanks!
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I'm in the exact same boat. Only in my case, caregiving is all I've done since graduating college and I've been out for some time.

I'm beyond ready to dump caregiving, walk away, and move on. I'm almost 30 and I've had to help my mom in some way since I was 17. However, there's no one who can take my place and my mom's too paranoid to get extra help for fear of Covid and getting robbed blind. And because of Covid and financial reasons, she can't be put in the nursing home.

I hate caregiving, my mom hates being in the position she's in physically, but neither of us have the courage or willingness to do something about it, let alone try to find expert advice that can be useful and get her to listen to said advice. She wants to do things by herself again, but she isn't willing to exercise more and be up and out of bed more. She talks about doing various things that involve being out of bed, but she doesn't always follow through.
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sara321 Apr 2022
I wish you to find a good solution! In my case, I'll never abandon my Mom. It's all about HOW you help. I want to change the way I help. There are many ways to help. Unlike you, I don't do hands-on care. But I help with countless other things. I'm now building a better way, so the new way can be more self-sufficient, and my involvement can decrease. Have a wonderful day!
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Me again. So by luck or design, we found out that many of the assisted living home companies, the ones that had multiple homes of 6-8 people in a house, also had another part of the company that provided caregiving at private homes. Since they had assisted living homes, they paid their caregivers a better wage and also provided full time benefits to their workers, which allowed them to hire and retain the better employees. I was told that the reason why they provide private care was to provide backup, a career path, and on-the-job stress relief for the people who work in the assisted living homes. In addition, this also meant that a caregiver had a little more choice on who and how and when to give care, while being employed full time with benefits.

From a client point of view, using one of these agencies cost me more per hour. However, I know I was exposed to caregivers who were doing caregiving as a profession, rather than just a way to make-ends-meet or extra money. In addition, since these caregivers could be picked to work at the assisted living center or rotated through the care home, I believe they gave a higher level of care in the private home because they had the benefit of growing their skills when they gave care in the assisted living centers.

The real issue though, is how to get a manageable list of these places, all who are licensed. I got the list from the social worker at the rehab hospital after my Mom had fallen.

There are referral services who will help you find companies. Some referral services do a better job than others. Your state has a Senior Medicare Patrol (SMP) as well as a SHIP (State Health Insurance Program) office. Both of these offices are federally funded for the precise reason to help older people and their loved ones navigate these ugly waters (and combat the fraud that goes along with it). I know that my SHIP office has a short list of care companies.

I believe that your Mom does NOT want to put you through all of this. However, she needs the help to find the "assistance" to help her live. It is overwhelming. However, if you can help her find a support system to take care of her now and in the future, you will feel better, you will be able to tackle other health problems easier, and you will know that you did everything you could to help her.

This is a lot to take on while you are young and going to school. However, a real relationship between people, is the one thing that money cannot buy.

You need to take care of yourself. See if your college has a health center that can help you work though these problems. They might have some resources or leads, that you were not aware of.

Please take care. You don't have to do it all. However, as a young manager, it is hard to know what tasks you have to do and what you can delegate to others. Every situation and every person is unique. However, don't give up on yourself yet. Welcome to Management, Master's level class.
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sara321 Apr 2022
Have a great day!

You wrote to me: "However, if you can help her find a support system to take care of her now and in the future, you will feel better, you will be able to tackle other health problems easier, and you will know that you did everything you could to help her."

Yes, I'm doing all of that and more. Don't worry. Agencies: there are pros/cons. Private: there are pros/cons. We've tried many solutions: also combining agency and private. Currently, I'm building a new care team. Thanks for trying to help!
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I wonder why the OP refuses to say what exactly is wrong with her mother. Every post she says they have a care team or are hiring more in home help so with all these resources I really don't understand her original question. Sounds like OP and mom are very well off if she can hire round the clock care for mom and these mysterious issues mom has that require round the clock care.
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sara321 Apr 2022
Hi! Thanks! My Mom can't afford 24-hour care, and doesn't need 24-hour care. But a live-in caregiver might be useful (live-in caregiver here is cheaper than paying by the hour). For now, we have a caregiver team, with some shifts during the day (not all day; she doesn't need that). My Mom's health - it doesn't really matter what the issues are. No matter what they are, the fact is, she needs some hours help during the day. The problems aren't just medical - example: suddenly the plumbing needs fixing. Example: some other problem. One or two problems, my Mom can handle. Sometimes, by chance, many problems happen exactly at the same time. I have now made a video with FAQ (frequently asked questions). Example: our plumber, the person we've used for years. Telephone number, etc. The private caregivers don't mind helping, they just don't know the contact details. Unexpected problems. My question wasn't about my Mom - it's about how I feel about the whole situation. It affects me physically. Of course, no one can know what the solutions are. My question was whether others, like me, have felt it's too much, and they've walked away (not from the parent) (but from caregiving). Caregiving can be many things. Caregiving doesn't always mean hands-on. Helping to pay bills is also caregiving. Calling the plumber, solving other issues, is also caregiving. Depending on how many problems you're dealing with daily, you might feel it's too much. I was totally miserable when I wrote my question. Today, there are less problems. But I still will create a better plan, so I can be less involved. Have a wonderful day!
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Sara, I’m with you - the revolving door of care and new people is too much. If possible, hire just one person or two people to be there during the day for as many hours as possible. I have someone at work that does this for her mom. Not perfect but definitely helps. Stay strong.
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sara321 Apr 2022
Thanks for understanding me!

“If possible, hire just one person or two people to be there during the day for as many hours as possible.”

I’ve done that. But things come up; sometimes you must set up a new caregivers team.

“revolving door of care and new people is too much”

Yeah. Have a good day!
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Sara,
I took on the caregiver role for my mom before she passed, and I was retired. I couldn't imagine how stressful it would be going to college at the same time. I went through a similar situation with home aides before I moved my mom in with me (both parents were living in another state). I had lot's of help from my sister who lives nearby, and there were still times I wanted to walk away. Even Mother Theresa in her final days began to doubt her faith. My only suggestion (for what it's worth) would be to find the right live-in aide. There is no shame in that, very few of us can do this difficult job without help, that's why this forum is here I guess. You have your whole life in front of you, loaded with opportunities for happiness. My best wishes for you. CTY
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sara321 Apr 2022
“You have your whole life in front of you, loaded with opportunities for happiness. My best wishes for you.”

Thanks for these very positive and kind words!

”find the right live-in aide”

I was just looking into that today. There are many stories about stealing. We must choose carefully.

“I went through a similar situation with home aides before I moved my mom in with me”

I see you know very well the problems that can occur with home aides. We had good ones, bad ones. Consistent, and not consistent. Some who were kind, some who enjoyed having power.

“I couldn't imagine how stressful it would be going to college at the same time.”

Thanks for your empathy! It helps. It’s hard, right - semester deadlines, and time limited. Have a wonderful day!
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Sara, when asked you mentioned plumbing as a care need of your moms. No matter where the caregiver is from, plumbing, or electrical, or h vac, or tree removal or whatever skilled labor will be on you and or mom to negotiate. I don’t see how any caregiver could really help here.

What specific caregiver task are agencies failing her on?
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sara321 Apr 2022
Hi! Thanks. Right, my Mom negotiates with the plumber. Here’s an example of how the private caregivers helped (example non-medical issue, plumber) : we prefer the plumber comes when the caregiver is there. The caregivers coordinated the timing with the plumber: sometimes the schedule of the caregiver varies. The private caregiver told the plumber: please come at 4 pm (whatever, it’s an example). Instead of a plumber, it might be a nurse coming. The private caregivers coordinated the timing. During their shift, they called the nurse, etc., to see which day/time is good.

Now regarding medical issues:
The caregivers aren’t failing on any caregiving tasks. But, you can imagine, if the staff is always changing, you must teach again what to do (even though we have lists). We now recently made videos for the specific medical tasks, so neither my mother or I, have to teach.
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I haven't read all the replies but it seems like you have plenty of resources available. You might need to coordinate with them to step back and enjoy your college years a little more. Sometimes even though things don't get done as well when we do it, it still gets done well. And that might be enough for you to avoid caregiver burnout.
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sara321 Apr 2022
Thanks Happyplace!
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Welcome to the Club Miserable…the club nobody wants to be a member of. Yes, of course..I dream about walking away..however, an alternate plan has to be in place. If your mother still has her marbles, then that’s a good thing….& then there’s flexibility & more options. If you find that Homecare is not working, then maybe a facility is next? Don’t sacrifice your life on caregiving. Hugs 🤗
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sara321 Apr 2022
Club Miserable, yup! I just need to change the way I help.

“however, an alternate plan has to be in place.”

Exactly. I’ll continue to try to make homecare work. I'm now building a better caregiver team, so it can be more self-sufficient, and my involvement can decrease. Have a wonderful day!
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The only way to get out from under managing a home and all that involves...i.e.. plumbers, electricians, lawn maintenance, roof repairs etc, is to move out of the home and into a healthcare facility where the medical care is automatically there.

That way you and mom are not managing a structure, mom gets the care she needs and you get to be a kid in college who visits her mom.
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sara321 Apr 2022
Thanks! I see what you mean: but, in a facility, you (adult child) still advocate, help. It doesn't change. The current problem isn't so much plumber (that's just an example). It's about finding consistent, good, honest aides. We've had good and bad ones. Honest and very dishonest.

"you get to be a kid in college who visits her mom."

I'll try to build a better caregiver team; at the same time, being a kid, enjoying college. Working on a deadline right now for my class. Have a great day, Jamesj!
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Hi Sara
Does the college you attend have a nursing program? If so, I bet there would be a few students that would love to get paid and also earn experience hours. Many agencies are notoriously understaffed..and a younger student has not gotten burned out yet...sad but true. Just an idea. You are in the foundation building years of your future career and life path and deserbe to concentrate on you for now. Your mom sounds agreeable and realizes that. It would be a good idea to put together a care binder with all possible questions for the caregiver, contact phone numbers etc and make a condition of employment that they read it and sign off on it, as well as complete job description with your expectations, so you dont have to continually train. Best of luck to you..hang in there.
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Did I miss the diagnosis? If it's an illness that will get worse, more drastic action will be needed. In either case, it sounds like mom needs to move to a nice apartment with an excellent, responsive office. That'll take care of the maintenance issues! The college years don't come back around again. I hope you take steps to substantially reduce your burden, because chances are it's only going to get worse. Good luck!
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I think you are already a caregiver, but one just looking for a different level of caregiving. You are absolutely right to do so! I have no special advice, just follow your heart, continue to communicate well with mom, and get her into a care situation that she and you can both tolerate. You know how they say you need to put the oxygen mask on yourself first before you can save another? Caring for you is important for this very reason. Know we are all (or at least most of us are) cheering for you (and mom) here. Keeping you both in my prayers🙏🙏💗
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Call DHS and tell them you will be done by a certain day, PERIOD! They're going to try and tell you that you can get in trouble for doing that, but I talked to a lawyer and you CAN'T GET IN TROUBLE FOR IT!!! Just stick to your guns, make sure you get a place to drop off from them and get on with your life!
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I have, for at least a week so far. My mom is 91 with dementia and Alzheimer’s. I want her in a nursing facility to receive the proper care. My sister (POA) disagrees, she claims “there are enough of us to take care of her”. Last October 2021 I started working from home at her house. Her condition wasn’t as bad then but it has progressively worsened. The first time I had to change her pull up and she had pooped in it, shocked me. I cried. From there, it got progressively worse for me. I was taking care of a (at that time) 90 year old baby, who is my mother. Every week day for two months I worked from home at my mom’s house. Remember, I’m working and trying to take care of her during this time. In December 2021, we got our 1st CNA. She worked for one week then found a full time job. The second CNA worked for a week or two but my mom tested positive for Covid so she didn’t come back. The next one worked for a month or so but resigned once I told her she couldn’t be on the phone while bathing my mom. During the time we had those CNAs, my oldest son who lives on the second floor of my mom’s house, lost his job and was home so I didn’t need to be there everyday. It was in February when the CNA resigned and I was back to doing this on my own again Monday-Friday. Cleaning her, her house, washing her clothes (sometimes 2-3 cycles to get the urine smell out), drying and folding the clothes then bringing them back to put them away. I took two full laundry bags every week to be washed. She wasn’t wearing the clothes, most of them were used to soak up urine on the floor. She can’t hold her urine and she can’t figure out how to put her pull-ups on. The statement made by my sister “there are enough of us to take care of her” never meant that they would do any of the necessary work. The plan they came up with involved a schedule of who was going to feed her and on what day. In May 2022, God sent us a CNA who actually enjoys being with my mom. She works 3 days a week and I worked the other 2. What a relief she is. She is the ONLY one who interacts with her, they talk, they play games (Mario Kart, dominos) they have breakfast together. It’s beautiful to watch. Needless to say, she and I did the same thing except I washed the clothes. I say that because after months of texting and calling my siblings to ask for more help fell on deaf ears. A few of them blocked me, I was told because I was complaining and barking at them. The POV opposed everything I did, my mom would run out of pull-ups (they brought one pack at a time) I would text for more and was told to go and get them yourself. When I did that and handed over the receipt (I bought them in bulk) I was told to not buy them any more because she gets them for free and won’t get reimbursed if I do. The last two months my job performance suffered and I had to return to the office to work. I set up an appointment with a CNA agency to work my two days. I wanted us to walk into the house together to get an idea of what they would be walking into. We walk in and my mom was laying on the bathroom floor. Not sure how long or how she got down there. Thank God they were with me. I gave the POV their info but she never followed up and my mom has no one there with her 2 days a week. A few months ago I put a claim in with elderly affairs about her being in the house alone at night. They came out to the house during the day when my son happened to be downstairs. I’ll put another one in very soon. I haven’t seen my mom in a week, actually I haven’t seen MY mom since last December before the disease took over most of her mind. This experience has left me angry, sad, mad, depressed, and helpless. I sit and wait for that phone call, the one that no one wants to ever get, I feel like a bad daughter saying it out loud but this is what this experience has left with me. As for the other family members involved with this, not sure if I’ll ever speak with them again once she goes.
Home Alone with Company
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BurntCaregiver Aug 2022
You did the right thing. Your mother needed to be placed. Many times families use the 'there's enough of us to take care of _____' argument against placement. Most of the time the family members saying this are the "generals". The are not the grunts down in the trenches changing crapped and pissed through pull-ups or trying to get it out of laundry, rugs, and upholstery. They don't have to baby-sit a grown adult like they're a two year-old. With a toddler they can be put in the play pen. Unfortunately, we don't have elder play pens.
In a nursing home there is a full staff who does all of the care because it's their job. They don't do all of the changing, washing, feeding, dressing, and baby-sitting while trying to work another job at the same time like you were doing. No one has a right to expect all that from anyone.
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