I’m so unhappy. I don’t want to be a caregiver. Has anyone walked away?

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

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!

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🙏🙏💗

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!

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.

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.

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 🤗

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.

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?

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

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.

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.

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.

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.

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

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.

Go enjoy college, you can be as involved or uninvolved as you like it is your life. Type out everything the aids need to know, honestly I make signs EVERyWHEre on how things need to be. Boundaries are ok.

There have been times when I wanted to leave for a few days. I didn't because who would look after Mom. She has Parkinson's and rheumatoid arthritis. Both are far along. I had to move in with her in 2018, after she had a bad fall. Some days I have to rein her in when she wants to do too much. She has problems carrying things from the microwave. I have 1 aide from an agency and a friend from church. We pay both. We get help from a senior agency to pay for the agency aide , my brother and nephew also help financially. My brother lives in CA. He also calls almost everyday to check on her when I am working. I have another brother who only helps on a limited basis. He bought her a lift chair, and visited her to keep her company occasionally. I also have a family friend who pitches in when I am working late at my current job. She would help with Mom when I worked the evening shift. I switched jobs in 2020 right before covid shut everything down. Mom tries to give me a break as much as she can. She does as much as she can and her body reminds her of her limits. Try to take out small blocks of time for yourself. I started seeing someone and he checks on her too. So sweet!!

Caregiving doesn't mean that you need to do ALL the hands-on tasks. It can mean making sure she is cared for. She can be cared for in her own home or in a long-term residential facility. Maybe she would be better served in an assisted living situation. You can then visit her as frequently and it can be less stressful.

In Oregon if you walk away, even giving the state advance warning, you can be jailed for elder abandonedment! I know because I was told that by APS! Laws very from state to state! Best to look up the laws in your state! Good luck!

My heart is broken for you. I know how you feel, and you don't have to walk away there is help out there for you.
I was taking care of my husband and finally I knew I just couldn't do it anymore. There were so many issues with his health and mental state. I spoke with his sister, a few very close friends and they all advised me to find a memory care facility to place him in. It was very difficult, but I did find one that I could afford.
He's in there now and I know he's not happy, but I had no choice. I know he's well cared for 24/7 and I have peace of mind. I thought about care givers, but it was just too costly, and I couldn't afford it. I visit him every other day and that helps me too.
You may want to consider placing your mom in a facility that will take care of her 24/7 that is also within her budget. Peace of mind for mom and also for you.
You'll have to find a facility that is reasonable and one that you can afford, it won't be easy, but you should be able to find one. Don't wait too long. There are independent living facilities that will help oversee her care and still let her be
independent. I wish you peace and hopefully you will find a place for your mom, and all will be well. My best wishes to you and lots of hugs to give you hope and peace. I know how hard it will be for you & I'm praying for your guidance and strength to get you through. God Bless you & keep you safe.

What is wrong with your mom that she needs caregivers?

Have you thought about some online classes? It is obvious you are committed to making sure your mother receives the proper care. It does take up a lot of time and energy to ensure that type of care. Have you ever thought of hiring a Caregiver Manager so you could have more time towards your studies? I am not sure of the financial situation, but if affordable this type of individual could be a blessing.

Im sorry that is happening to you. You are just unfortunate to have your mom not doing good now, instead of later in life. It doesn't get any easier then too. Nothing prepares you for it.
Is your mom able to go to assisted living for help? Is there any other family members that can help? Her family members like her mom, an uncle, aunt? Reach out. Maybe they think you are handling it OK. And don't know.
Can you write up a caregiving list for things that need to be done? That way you don't have to get phone calls. It can be in a notebook. All prepared with the meds put out for those hours. What is expected. 1, I worked places that had that.
Id make sure you take time for yourself. I bet your not doing that.
Maybe you can exercise the stress away, or go on date nights or a date day for a few hours. That way you still have down time and fun.
It might have to be planned ahead, but so what. Something to look forward to the whole week. Like go skating. A bike ride for 3 hrs at a park. Or a walk. Or have a brunch with your college friends. How about indoor skydiving with friends. I went out with school friends to afternoon brunch at a local tapas bar. It was fun. We also went to an indoor rock climbing, and then out to early dinner another time. Go try that great coffee bar. We only went a few hours bc people had commitments. Take care.


You can always vent on here.

I know you want to be a good daughter. I am 61 and my daughter is 23. She is finishing college and starting her life. I would be absolutely emotionally at my wits' end if she were doing what you're doing. A new care team may not be the answer you hope it is. Do come up with a plan if you do need to walk away. If necessary talk with your mom about what level of interaction would she be okay with at a minimum? Have everything open between you two since it sounds as if she is mentally fit. Then find a way to live your life. Please.

Your wrong I am on this forum! And yes I walked away!!! There is nothing wrong with it!!! And there’s nothing wrong with you! Take care of yourself!

Sara,
I suggest investing in biz ad classes if you’re not already. Find an applied small business course, or how to structure one.

There will be a manager. That’s you. Set your burn rate to when there will be no more money of hers for aides. From there, should you choose to hire private, do so exactly as your biz ad professor says.

My in-laws hire private. She is paid 105k year but um, they are not paying attention to the liability. She gets so hurt she can’t work, she will successfully make the case she was a slave. She might to the irs too if when they catch up to her.

Thats the one thing about private. Just make yourself a company or do whatever to limit the liability from them

I’ve walked away, in my case I had to go no contact bc my Mother was so toxic.

You always have to make difficult choices in life or you won’t have one.

These things will effect you and your health long after this situation is over.

If you were my daughter I’d send you far from the situation, I take it you’re an only child.
I’ve had to caretake since I was 10, it causes resentment and an inability to nurture your own family when the time comes bc you’re already empty and burn out.

Start talking to the folks in charge of these different agencies, senior care officials tell them your not going to be available. You may be attending college across the country. You can end it on your terms before things happen in a way you can’t control.

I too have sometimes felt that way and sometimes feel like giving up. But I have to just keep reminding myself of several things. One, you cannot do it alone. So I ask others, like cousins who are willing, to help out. Two, you need to take care of yourself too - take a break each day, and take a vacation a few times, when someone else is able to help out even just for a few days. Thirdly, I just have to remind myself that if the situation is reversed, my mom would do everything for me. So I'm reciprocating. I would want someone to do the same for me if I were disabled. It also helps me to remember a quote from Mother Teresa, "A life not lived for others is not a life." So helping someone else is a good thing, it's a necessary part of life. Also, she was quoted as saying, "Love to be real, it must hurt, it must empty us of self." This means genuine love for someone - parents, children, spouse, entails suffering and difficulty. It is a part of life and that's normal. You're not alone. Everyone else goes through some sort of difficulty or suffering. It also helps to be grateful. We can all be grateful about something. We can be grateful that we don't have to worry about how to evacuate an elderly parent from Mariupol, while the Russians are bombarding the city mercilessly and slaughtering and gang raping civilians. Our problems seem like nothing compared to theirs. In conclusion, we can adjust our way of thinking to lessen our own stressful thoughts, and we can ask for help from others to lessen the physical demands on us. I feel for you and hope you find the help you need. You will get through this and this too shall pass.

Hi, Sara321,
I believe there are categories and levels of caregiving. Most people here are hands-on caregivers; others are administrators. Seems like you fall in the latter: you manage the hands-on caregiving, which is stressful because you have to delegate the work to people over which you have little control beyond hiring & firing. Even then, your mother is an important part of that component. Still, you feel responsible for whatever happens.

What to do? You say that managing help is overwhelming for her, but you've reached that point, too. Looking into a new agency should help because switching caregivers on a regular basis makes no sense.

She seems to be overly dependent on you, & you seem to be an "I'll fix it" type of person. It's time to set limits. Review the day-to-day *and* larger problems/issues with her, try to come to an agreement about what each of you should or can handle & make a list of each. You may have to write directions for her portion, but when it's in black & white, it should show you that there's are things you shouldn't have to stress over. I'm sure the list will evolve - her physical condition isn't going away - but it's a starting point.

Summer break is coming, which should give you time to work through some of your mother's caregiving problems. They will never go away 100% but giving each of you some responsibility may make your mom less helpless, too.

Good luck, Sara. You're a caring person!