24 y/o caring for mother, how to tell her you want to move out when she still needs care?

As a male that first cared for my father in my 20s before he passed from cancer, and now caring for my mother in my 30s as she is challenged by a disease known as LBD, I speak from over 12 years of caregiving experience. Even with that experience, I don't have enough information from your post to give sound advice, so be careful of the many self-centered people on this site who quickly give advice that you know in your heart is COLD and not representative of you as a loving and compassionate daughter. From what you have shared, I would say that more research is needed on your end to find out what income, age, and medical requirements are considered to qualify for government funded programs.

My mother does not receive any public funds, as we are direct payers to 4 part-time caregivers --- yes it takes a lot when considering all of the needs of your loved one, and you have to have contingency plans in place in case a caregiver calls in sick or has an unforeseen situation that keeps her/him away with short notice.

I purposely hired 4 different people who shared our family faith (Christian), have current State-issued fingerprint clearance cards, are CPR and first-aid trained, and who would be willing to take an online training course on food preparation and safety (same as a restuarant employee). I took all of these steps because my due diligence in finding quality caregivers to assist my mother while I am at work matters to me for my peace of mind.

For any of us to help you with sound advice, we just need to know more about your mother's current income level, current outside assistance being received (weekly nurse check-up, etc), if your mother would be willing to sit down with a counselor who specializes in finding programs for in-home assistance that she may qualify for, and whether you are feeling any pressure from your boyfriend to move out.

Me and my wife could offer you direct advice in private messages if we had more info to consider. Whatever you do, don't do anything quickly. Take the time to thoroughly research the options, and just know that having a life as a caregiver is possible when you research properly and have the right help.

It's by no means easy to care for a loved one, but with strenghth from God and using my intelligence to research, I was able to keep my sanity, keep my peace knowing that I am pleasing God, earn a degree, become a senior manager, and have a family while balancing out the needs of caring for my parents. Just know that each case is different and what didn't work for a lot of people on this site, may actually work for you, and vice versa. You are an amazing daughter and you will reap what you have shown in more ways than you will know.

Talk to a Social Worker and Maybe He or She can Best Assist with This.

Wow! You have handled much more than the average 24 year old. That being said it is not unreasonable to want a life of your own. Given her medical needs, it may be time to investigate home nursing care. Maybe introduce the nurse slowly while you cut back on your performing the task. Not knowing her financial status, it may be a possibility that she is eligible for some assistance through Medicaid. Some states area agency on Aging provide assistance for disabled adults. Is it possible for you to have a frank discussion with your siblings regarding her care. Perhaps their taking on tasks they do feel comfortable with. Other than the drain care, is she able to bathe and dress herself? I'm thinking that she needs to do as much for herself as she is able.

Speak to social workers about this and move forward with YOUR life.

Time to talk to social worker associated with her hospital and probably home health care agencies. The social worker can walk you through your mom's insurance coverage in regards to paying for home health.

Decide how you would like to be involved in your mom's life... and what you would like your life to be like. Then, talk to your mom about the dreams for your life. Discuss with her how you plan to obtain your dreams. Then, talk to her about how you'll both need to make some changes - her allowing others to care for her and you not being there as much or moving out. Explain how social worker has options and resources you can both look at and to decide together on the best ones. Follow-through and get the care your mom needs arranged before you head off to work on your dreams.

As has been said, now is the only time you have to live your life. Talk to social workers and seek advice through doctors' offices, including referrals for counseling for herself and for you. What would she do if you were suddenly incapacitated? She would go on. I am 59 and of an age to be your mom. (I have a 21 year old daughter.) I would NOT, NOT, NOT want her to give up her only youth to care for me.

Dear S,
You’ve done a spectacular job as caregiver. Now is your time to shine. You will have to get certain important papers that only Elder law Atty can provide. Go there with her so you can be appointed her financial POA & Health proxy poa. Also, she should make out a Will.

She will need live in help it sounds like. Either that or 2 aides on 12 hr shifts. ...& what happens when one of them don’t show up? You’ll have to stay home!!!

What happens if you get injured or get sick?

I’m 60 & caring for a 92 yo mother with dementia...can’t walk, incontinent, sometimes agitated or even violent. When I was sick with stomach virus, the Aide refused to stay longer or cover for me. I had nobody to replace me.

If she has resources, she can private pay until Medicaid kicks in .

Start now to tour places like Assisted living or Skilled Nursing Facilities. She would qualify since she needs nursing care from liver problems. If she’s not coming directly from hospital, they will tell you to get PRI Nursing Assessment...& then take the paper to SNF. Talk to Admissions..

HUGS 🤗

CaregiverL

Im so sorry you are in that predicament. I'm sure you love your mom, and it's not always a burden, but caregiving is tough, and you also need a life. Much older people suffer burnout over constant caregiving. I'm sure you are too. It is very stressful. So is school.

Your mom is being selfish leaving all the care to you. She can pay cnas or nurses to help. Or offer you breaks.
Are you able to wait till your done school? Maybe you can get a job out of the area. That is the perfect excuse. Cant find a job close. Too bad, I need to work in my field where I can get a job. And line up an apartment out of the area.
If you cont to live close by, you will be forced to continue caregiving. You dont want that. Your gonna have to phone or write your older siblings telling them it's their turn to step up. You have done enough. Do that after you have lined all your ducks in a row. That way there is NO GOING BACK.
As long as you are still in the home, still close by, you will have all other parties telling you, you are selfish and they will try to force you to continue free caregiving. I'm sure you have burn out maybe depression from this job being forced upon you. Tell them that, but if will fall on deaf ears.
They are not going to want to step up. You have made it too convenient. They are going to say hurtful things. You must stay strong and not listen or give into their rants. Keep repeating over and over I have a job lined up. I'm leaving. No negotiations.
You will have to give your mom notice to find someone. There will be tears, tantrums, guilt trips and maybe even blackmail or offers of money to stay. Dont give in. You wont have a life!
That is how I would do it.

If you try to do it during your schooling, you will have more stress than you can manage. You can also tell your mom you have a lot more research and studying to do. You wont be around. Find a new place to study. That way she is forced to find someone to help her. Get that going now. Dont be available by phone for every emergency or she will have you on a short leash. That is what the cna is for. You are going to have to develop a thick skin and stay strong or all your family will pull you back in. Good luck.

Please do what you can to start living your own life as soon as possible. I gave up much of my life after my Dad died when I was 19 and my Mom made it clear that my job was now to take care of her into her old age and give her grandchildren. I never moved to where I wanted to move, all our holidays were planned around my Mom, I turned down amazing career opportunities that would have impeded my "responsibility" for my Mom, and it dragged my husband down, too. We divorced a year before she died. I was 51 years old. I had a new lease on life!! I remarried a man who shared my dreams for retirement. We had 3 good years together. Then his only sibling died suddenly, my husband became solely responsible for his elderly parents, then his dad died leaving his Mom to his care (they were irresponsible with their money) and now my husband is being evaluated for cognitive impairment. So now I am tied down AGAIN by a narcissistic, pathological lying MIL and a husband of 5 years who may be in the early stages of dementia. Such is my life.

But...I tell you this only in order to encourage you to live your life while you are young! My 2 kids have always had my blessing to spread their wings and fly and not worry about me or be tied down by me. They have done so much in their young adult lives and live very far from me....and are happy! I havr a good relationship with both of them. Live your life now because you do not know what the future will bring and if you wait to live your life, it may be too late. I wish you lots of luck and many hugs of support.

You have made generous sacrifices to care for your mother. Don't feel guilty about wanting to have your own family and career. Make sure all of your mother's paperwork is in order, giving you power of attorney for your mother's financial and medical decisions, and she should make a will and a living will expressing her wishes for medical care and end of life. You will need an attorney for this, especially if there are assets (such as a house, etc.). You will have to talk to her about your wishes to pursue your career and life so that you can find out what course of action she would prefer for her own care. Although your mother is still young, she requires the kind of care that they give in assisted living or by having a home care aide. If your mother's financial situation can provide for it, perhaps she would prefer an aide to come in for a few hours a day to change the dressing, and help out with other things like shopping, cooking, cleaning, etc. I'd suggest doing this while you are still there so you can see how they are with her. If she does not have a strong support system other than you, consider an assisted living facility near where you will be so that you can check in on her often. Home care aides and assisted living facilities may be highly rated, but it's still better to be checking in as often as you can.

Your Mom is so young yet too... but, maybe she doesn't need 24/7 care but some additional home supports. Your time being nurse will be skills you will carry through life and you are really lucky to actually have a stable personal relationship while balancing all this and school. Make a good responsible plan in getting some responsibility off your back, and get on with your life. Because you've been holding the power, I'd suggest keeping it, like financial control as then you will assured non-corruption of Mom's support

You’re an amazing and loving daughter. Unfortunately, I’ve seen people your mom’s age in assisted living and even memory care. If she isn’t actively seeking answers to her immune system illness outside of a liver transplant there’s a good chance she’ll always need assistance. Your sisters don’t want to make their young lives as caregivers either. Like others have said, call and/or visit AL facilities. Find out about pricing and if they accept Medicaid. If she has plenty of financial resources then she won’t need Medicaid. All this is a lot to handle at any age but I know you can do it. Get out of your caregiver role ASAP and don’t feel bad about it. AL is probably your mom’s best solution and she’ll be able to connect with a community of people there. This will help substantially with her depression tendencies. There was a 50-something guy in my mom’s senior living facility that didn’t need any assistance but suffered with severe bouts of depression. He put his energy into helping the residents with hanging pictures and giving parties, etc. Just saying. AL could be the best move for her.

You are too young to be tied to the role of sole caregiver. And you’re reaching an age where you have to focus on your own ability to support yourself.
If she has sufficient finances, your mom is a perfect candidate for assisted living. If she refuses, homecare is the best solution. It all starts with you telling mom that you need to move out. It’s really not up for discussion and if it sends her into depression, she needs counseling.

You have done your due diligence daughter.  Your moms issues have been and will be long term.  You need to do some homework before you sit down with your mom to have the talk.  Find out what her options are... if in home care is an option, find out the steps needed to make that happen, cost and coverage.  If assisted living is an option, find out the steps needed to make that happen, cost and coverage.  If a nursing home is an option, etc., etc.    My point is, just don't propose that you want to move out without having solutions for her in hand.

You are right that you are entitled to have a life.  She can't expect her bad health to be a death sentence for both of you.  Tell her you want to be her daughter, her baby girl, not her caregiver.  She is going to be scared and offended and hurt, but if you have solutions in hand and assure her you are still her daughter and will still be involved in her life, it will soften the blow.  Good luck.

You have a good heart. You need to know that your mom might be happy for you to start living away, and she might not be. Regardless, it is more than okay for you to do so. Your mother is young, she will need this care for decades, and you will have to make changes along the way. You are allowed to make changes that are good for you too, even if she does not always feel comfortable with them. You aren't leaving her on her own with no one to care for her. In fact, she gains some independence by switching some of her reliance to non family caregivers. If you make a decision that your mom does not like, this does not make you any less loving of a person. It reflects wisdom and the ability to make tough decisions. God bless you and your mom. I pray your siblings step up and help.

You are an amazing person and it is so wonderful that you did this for your mother.
She notices it. If, you two are really close, as you say, then her love will extend
for you, beyond herself and she will let you live your life. Love has no boundaries.
And you are much younger than her and have a whole life to live without being her
constant caregiver. You are too young for all of this. A nurse for her sounds
like the perfect solution and when you leave, perhaps your siblings will kick in their
part because they will have no choice. When a parent is sick, and they really love
their child, they will not be so selfish as to stop their child's life to be caregiver.
This requires so much work and dedication, as you have already given. You only
have one life, and if you do not fly, you will be stuck and become resentful later one. It is best, not to have any of these feelings, of regret, etc, later on and do
what you feel is best for you now.

It’s curious to me that your siblings do not help out and I wonder if your mom might have any narcissistic tendencies? I say this because it doesn’t appear, based on your comments, as though she thinks about you and possibly everything is all about her? This could be why your siblings don’t help. Sometimes one has to be a little older or outside of a situation to realize what’s going on. Just a thought and I could be off base in my thinking. If this might be the case, you should read about NPD (narcissistic personality disorder) and see if any of it sounds familiar. It could change how you want
to approach things.

If there's a heaven, you'll be first in line, my friend.

I don't have any tangible advice....You didn't mention long-term prognosis for your mother, but you have to pow-wow with sibs and set some concrete expectations or you will be doing this forever. I am sure your sibs want things to stay the same for their sake. It's time to start thinking about yours. Here's to a better new year!

If you don’t do something, you will be there forever. Your other siblings can take turns helping her.

Our local adult day care and senior centers both have a nurse on duty who can dispense medications and provide other basic care as needed/requested. My mom needs a B-12 shot and although I can do it, I was very happy to turn that monthly duty over to the nurse.

Maybe your Mom could attend some of the senior center programs and let a nurse there help her too. She might enjoy the socialization if your local center (like ours) includes some younger seniors who mainly enjoy meeting for breakfast/lunch, taking a walk around the gym, and talking or playing cards for a few hours.

With the help that she needs Assisted Living might be a good option. Enough "freedom" that she could come and go, take part in activities and outings that the facility would have. Many have very active lifestyles. She might be fine in Independent living but if she needs ANY help she would not be able to get it from the facility, she would have to move to AL.
If she is resistant to moving to Assisted Living then you should discuss the other option of paying for a Caregiver that will come in as often as needed. You might have to pay more for a nurse to come in to do the drains. (It is possible for a "lay" person to do these tasks and if you hire privately you can train someone to do them) There are advantages to hiring through an agency and there are advantages to hiring privately. With an agency you don't have to worry about taxes and all the paperwork, you don't have to worry if someone calls in sick, the agency should send a replacement. Privately you can instruct someone to give medications and do some tasks that an agency would require a nurse to do. This is not a matter of wanting to charge you more but there are regulations that an agency must follow.
This might be a discussion you have as a family.
You want to progress with your life....
Mom needs help.....
Siblings could do this if they wanted to.....
Options are so have them step up with no additional cost to the family...
Hire someone to come in that will cost mom money (this should come from her funds....)
Look into Assisted Living....
Is there a possibility that mom will need to apply for Medicaid?
An appointment with an Elder Care Attorney might also be in order, with the whole family so you all know what will be involved.

You're a daughter and the "baby" of the family. This is a double whammy for you. Mom probably sees you as "her baby" and wants you to stick by her for good. By chance did she marry very young? If she's 52 and oldest kid is 29, she was 23 when she first had kids... certainly not WAY too young, but still quite young. Sometimes when this happens, the mother gets mentally locked into the Mom role. The older ones leave the nest, but then there's the baby. And Mom means well, but just can't imagine that last baby leaving her. If she's been MOM for more than half her life--and with her issues I am guessing has not had a career or other things to focus on-- the baby leaving is pulling the rug out from under her, at least in her mind. If she's mainly been Mom, what is she once all the babies are gone for good? What's left?

It's unfair of your siblings to not really help and expect you to do it all.

You are so young to be saddled with this life, this never ending responsibility.

It is possible that she could live another 40 years...right? My mother is 94 and has little wrong with her, she has a 16% chance to live to a 100 and possibly outlive me.

You have paid your dues, it is time to start your own life, build yourself a future.

It's not about what she wants, it is about what she needs. Be firm, tell exactly what you are going to do and then start looking for medical assistance for her, it is available.

Life is a song worth singing...sing it!

Time to hire a part time Aide who can come in 3 hrs per day and help her. You need to get on with your life if she is only 52. As difficult as it is, you need to tell her it's time for you to fly. You will always be her daughter and you will always be around to help, just not on a full time basis. There is help available out there so don't live in a box and feel trapped. Good luck

I'm sorry but your mom should have talked with you about this situation....she know you need to move on with your adult life. Just talk with her, don't wait because many choices need to be made before you move out....and you should!

Can yo and mom tour local assisted living place near you? That would be helpful too

ask doc about palliative care/hospice... Talk with social worker... but don't leave your mom alone.. that may crush her and you may feel guilt for a very long time, ...

FEELING GUILTY is the worst feeling, and I cannot get over it very easily...myself...

so think about it, what you are saying.. maybe somehow someway you can get extra help..It is always the youngest it seems, to be dealt this hand....

I think you might find this link an interesting read:

http://www.dhs.ri.gov/Programs/LTCHomeandCommunityBased.php

It's the Department for Human Services for Rhode Island. Among the community based services are personal care and self-directed care. I would expect the DHS's main focus to be on people who can't *afford* services and therefore also need help with funding, but the point for you is that these are the people who will know what kind of in-home services are available and which organisations you might approach for support.

The thing is, you have two different but closely connected projects for 2020 :)

Project #1 is enabling your mother to live independently, or independently of you and your boyfriend anyway.

Project #2 is making your own plan for your future, rounding out your general goal of moving out and moving on with your life with some specific ideas about where you'll live and how you'll develop your career.

Tackle them separately, and it should be easier to break them down into achievable steps so that they're not so overwhelming.

It will also be much easier and gentler to explain small, defined steps to your mother rather than challenging her with "What Are You Going To Do About Your Future (when you haven't got me here)?" all at once.

Do your mother's daily care needs include anything that the average person could not manage by herself? You say she has drains that require daily maintenance but she can't reach them - why not? Is that to do with where they're placed, or with her not having the right technique or physical ability to deal with them?

Your mother has been through a lot, please don't think I'm unsympathetic to her. But I'll give you an example from work: a lady in her eighties, with cancer, discharged from hospital with an ileostomy and sent home, and our job was to help her develop a daily routine for managing her stoma care. Within three weeks she had it all confidently under control and didn't need us any more. She was a star client!

What I'm wondering is whether your mother might be much more capable than either of you realises, and whether in that case it would be better *for her* if you gradually began to step away. She's only 52 - she should have years of independent life ahead of her yet.

Who else is involved in her healthcare? - hospital specialists, her PCP's team, anyone like that?

Your mother is 52, with serious health problems but no dementia that you have told us about. She should be capable of making her own decisions – it’s not your responsibility to sort out all the options and make the decisions for her. Can you talk with her about the changing situation, as a joint issue? What does she want herself? She should be researching the options – she can do a lot by phone or email. Does she actually want to stay in the house by herself? If she is nice and you are close to her, she won’t expect you to be a permanent caregiver, not at 23 as well as all your teen years. Your future matters to you, and her future matters to her. Well done to both you and your boyfriend for getting this far, but now things are changing.