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

Again just to be clear:

Don't worry, everyone. I'll never abandon. I'm trying to find a good way - her health, my health. Have a great weekend!

I walked away. I couldn’t handle the physical and mental demands of my husband. It sounds cruel but I had to do it. Some people restructure the care, get more help etc. I put my husband in. Memory Care Facility, he went through three others before I found the fourth which can deal his violent and sexual behavior. There is no shame in saying I can’t do it. It is time to live your life. Don’t wait until you fall flat on your face. Yes, mom took care of you went you were a baby but the time is yours now. Your mom probably wouldn’t want you to spend you youth looking after her.

Please put on your oxygen mask first and don’t feel guilty! Caregiving is an exhausting job, so you need to do what is best for you and that in turn will be best for your loved one!
Pray for strength and faith that things will be ok.

Sara, you are an absolute an angel! You need to designate her care to others. Stepping aside, is NOT the same as walking away, not by a long shot. You will have contact with mom and love her as her daughter should. If you do not take care of your needs, you will grow to resent your mom, and neither of you want that! Take care of yourself honey, you both deserve it!

This sounds scarey, but
Do your mother’s diagnoses qualify her for hospice?
My brother qualified and when I was sick with a covid diagnosis ( my brother’s only caregiver) they came to evaluate him and gave me the backup I needed.
An RN came every week, they were supportive for me and we were up front with my brother regarding why we had the hospice.
Hospice was glad to come out and evaluate and my brother was receptive because I explained why this would be good for us.
It cost nothing and the person explained what they could do and could not do.
I know hospice in our area goes into nursing homes. I do not know how home aids affect them, but expect they would encounter that situation.

To me… the best thing hospice did was to manage things. And that seems to be what you need.
the right hospice might help you get on the right track to best provide for your mother’s needs as well as your own.

It sounds as though your mother could use more care than the aids can supply, and she also needs consistency. Your feelings are normal, and you are not abandoning your mother. You don't say how old your mother is, nor mention her financial situation, but it may be time to look at assisted living for your mother. A clear talk with her physician is important, as well.

This sounds scarey, but
Do your mother’s diagnoses qualify her for hospice?
My brother qualified and when I was sick with a covid diagnosis ( my brother’s only caregiver) they came to evaluate him and gave me the backup I needed.
An RN came every week, they were supportive for me and we were up front with my brother regarding why we had the hospice.
Hospice was glad to come out and evaluate and my brother was receptive because I explained why this would be good for us.
It cost nothing and the person explained what they could do and could not do.
I know hospice in our area goes into nursing homes. I do not know how home aids affect them, but expect they would encounter that situation.

To me… the best thing hospice did was to manage things. And that seems to be what you need.
the right hospice might help you get on the right track to best provide for your mother’s needs as well as your own.

One person here had a good suggestion that I'd like to echo. You said your mom is sharp. This person on this forum suggested that perhaps your mom could tell the caregivers what to do. Then you could possibly go home several days a week. And you said you live nearby. Could she or the caregivers give you a call if you need to come by?

Plus the cameras are a good idea.

If affordable, assisted living is a great option. I'm three times your age, and trust me, the burn out does not get better as you age. If you are that burnt out now, how will it be when you are close to 70?

Love the Sweet comments you wrote re: your Mom. Not many of us are blessed with this type of Mom... Even with that: YOU need to live YOUR life. We all do. Give as we can & add in the necessary help so we can work our careers, families of our own, live out our lives as meant to. Seems you are very well connected to her-work on securing better Caregivers. Any other family-friends or neighbors that drop in for visits? PS Some decide to be the full time Caregiver for their Parents. Maybe they have more time? No career or significant other or children of their own. Made the decision to 100% be that person/Caregiver because not a lot going on in their lives. Do not take in anyone's judgey chastisement. Everyone heard the "You Do You!"

What exactly is moms health issues that she requires 24/7 aides and care. You never mention that plus how old is she.

If your mom really wanted you to stop caring for her she would have released you from the obligation a long time ago. Issues pertaining to moms care are always going to come up. If you are waiting for things to settle down you will be waiting for the rest of your life. Days turn into weeks. Weeks into months. Months into years. And before you know it a decade has past in the blink of an eye.

Suggestion for new caregivers who dont know what to do. You could write out a manual with all the details and information. This can be given to new caretaker to read so they can get up to speed. Have it in a binder with each page in those plastic protectors. Make an index with tabs for quick reference.

I saw your lists and video things below but I think a manual more detailed than lists may be helpful too.

@sara321, my heart goes out to you having to deal with all of this at such a young age, and being your mom's only source of family support. I'm an only child and have been caring for my mom... well, my whole life in one sense, but in a much more intense way for the past 15 years as her health has declined. I'm fortunate that my mom is a lovely person and we are very close, but I'm now 57 and have never married, never had a family of my own. Partly I'm just an extremely independent person, but I also know that all of the energy I've put into my mom's care (emotional and physical) over the years would have prevented me from pursuing those things anyway. I also now have serious, debilitating health issues that I'm convinced are due to the stress of the last decade and a half. Please do something now to (gently, lovingly) remedy your situation before inertia and/or resignation take over.

I'm surprised that your agency makes it a point to swap out caregivers so often. That makes no sense to me from a learning curve standpoint. You're always starting at square one! If they're not willing to work with you on a more consistent schedule -- for your mom's comfort level, for the quality and consistency of her care, and for relief for you from having to be a full-time educator for every new aide -- I would look for a different agency. My mom has three primary caretakers who rotate in and out, all of whom have been with her for at least a year (and one for 10!). They know the ropes, she knows them, they love her like family, I have personal relationships with all of them, and I can't imagine what we would do without them.

I would caution against private care unless you know the person very, very well. Too risky -- you never know what will happen and then you're the one stuck trying to find an emergency replacement instead of the agency who already has a pool of caregivers on hand. And if you stick around on this forum long enough you'll see a lot of worse horror stories (live-in caregivers trying to claim ownership of a client's home, stealing money, etc.). If you're like me you want to see the best in everyone but sadly, sometimes we get proven otherwise.

Don't let anyone tell you you're a bad daughter for wanting to step back from this role. I wish you all the strength, comfort and support you need as you move forward through this journey!

Hi Sara321, I have sisters that were caregiver to our mom, and today they will both tell you they will never be Caregiver again. It requires a lot when you are Caregiver to someone that has a disease where there is no cure, like you and I.
Sounds to me like some of your Caregiving support "in-home care" is not that great.
First of all, Caregiving requires a lot of time, patience, planning. Not everyone is cut out to be a Caregiver. Your trying to go to College and cram all the caregiving on your shoulders. What you need is a break from it all. You need to consider assisted living for your Mom. You need to sit down with your Mom and discuss all the options. Then the both of you come up with a plan.
I been there seen it all, and it is not healthy for you to stress. Girl, sounds like you have a lot of weight on your shoulders, and it sounds like you need a break from it all. Whatever you do, do not blame yourself, tell yourself you need a break. The fact is, `when you sit down to come up with a great plan for your Mom, and with your Mom. Always ask yourself , what will improve your Mom's "Quality of Life" ?. Then research online what is available in your area. Then make a list of your options. Then sit down with your mom and come up with a plan together.
And, whatever you do, do not blame yourself, and do not feel guilty, after all no one chose to get a Disease, and anytime you need to talk, other Caregivers are here to support you.
Let me know how it works out for you, your Mom and you have a great day

You might want to think of cutting back your credit hours. It will take you longer to graduate, but if you keep up at the pace you are, you will end up burnt out to the point that you aren't doing your best in college. Think of the caregiving you are doing as a job. How many hours are you working? How many credits hours are you taking? I worked with college students for many years. Most can only do their best with full time between college and a job. Those who tried full time credits and a half-time job were exhausted and not doing their best. And I never met a student who succeeded with full-time work and a full-time job.

I'm sorry that you are having to deal with all of this. It is quite overwhelming especially for a person who is being thrust into a management position without a mentor.

My comment is about the agency sending in different people. Our agency stated that they did not assign caregivers to a person. I was okay with that because I didn't know which way was best. I soon realized that it was a good thing as my Mom was very hard on people, and this allowed the agency to schedule different caregivers especially if the caregiver didn't like the client. However, it works both ways. If you or your Mom don't like a caregiver, you can put them on the "do not come" list. Going one more step, you can also tell the agency which caregivers you prefer and if the caregiver agrees, they can also tell the agency that they want to work for a certain patient (the caregivers new to the industry are reluctant to do this). When a caregiver and I both called in and said we liked a person, they tried to schedule the caregiver as often as their schedule permitted and we were both happy. The agency never promises, however, I understand that the agency wants the "out". Just make sure you keep track of each person and how they turned out.

One more thing. I'm a "list" person. When a caregiver first comes to the house, I gave about a 20 minute orientation tour (how to use the microwave, that my Mom wakes up all the time, don't eat in the bedroom, no television, where she is most likely to fall, how and where to help her, etc.) In those 10-15 minutes, I could get an indication of whether the caregiver was a potential fit, or wasn't coming back after this first session. In turn, for those who listened, they got a sense for what their night was going to be like. The ones who insisted they had lots of experience and wanted to just jump in and take care of my Mom, were in for a horrible night and usually never came again. I understand the file on my Mom was horrendous and long. There were even some people that I told the agency we could not retain for the night as they couldn't even make it through the orientation (I think one came in on drugs and one smelled like marijuana).

It was hard. We went through a lot of caregivers as we weeded out the ones who just didn't have the skills ("personality") that we needed. However, I had a reasonable amount of experience as a team lead and team manager, before I had to do this and we got down to a few people who were dependable and meshed well with my Mom. I also did a fair amount of coaching on the people I liked but my Mom did not and she eventually liked. It was hard work, however, I can say that I slept well at night knowing that my Mom was in safe hands.

I also stayed overnight in my Mom's house, so I could hear the interactions between my Mom and the caregiver. What my Mom said the caregiver did, did not always mesh with what I knew. We didn't realize at that time that my Mom can sleepwalk, sleeptalk and sleepeat.

Good luck. It might be the merry-go-round of the caregivers that is really stressing you out, however, having a single caregiver has its own issues also.

Don’t think of it as “walking away”. This is a decision point and it is difficult because it is strategic. You’re ready to plan forward. Your life as well as her safety and well-being are to be taken into consideration.

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!

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.

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.

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

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!

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.

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.

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.

What is wrong with your mom that she needs caregivers?

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.

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!

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.

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!!

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.