Hello all,

I'm a 24 year old female who has been caring for my mother for 7 years now due to an autoimmune liver disease that led to liver failure and consequent transplant and diabetes. When she first started to get sick I was in my junior year of high school and I have been my mother's caregiver ever since. I have handled all of her financial obligations and household duties despite having two older (27 and 29) siblings who although aren't as close with my mother, are still capable of helping her for certain things. She still requires daily care and has very frequent doctors appointments but I am at a point where I feel my life is on hold.
I am currently in school for my masters degree and have been with my boyfriend for 6 of the past 7 years as a caregiver. He moved in to help me when my mother went in for her transplant as she was hospitalized for months and I was unable to maintain the household myself and be at the hospital with her, which was out of state. I am at a point where I feel I am now ready to start my own life outside of my childhood house but do not know how to approach the subject as my mother still requires my daily care. We are extremely close and I fear me telling her I want to move out and be my own person rather than a constant caregiver will send her into a depression as she will then be in the house alone.
She is not in a position where I feel that she needs to move into any assisted living as she is only 52, but I do feel that she will not be able to be without someone there for her medical needs (she has some drains in her liver that she cannot reach that have dressing and require to be cleaned daily. While I do feel a nurse can come in to do these tasks, I am not sure she will be open to the idea as she has never had to have outside care as I have always made myself available.
My siblings do not seem overly willing to help with the more delicate tasks as they do not have the experience I do, but I only have it due to no one else wanting to. I'm at my end and am just looking for people who understand to help me with my sanity over this situation.

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I think you might find this link an interesting read:

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.
Helpful Answer (16)

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!
Helpful Answer (12)

Sdias, have you asked yourself what people who have health challenges like your mom do who do not have a child (or anyone) to care for them? There are ways she can become independent and get care. People do it all the time. I agree with the others who say to tell her you will be moving on. She's NOT going to like it (at first) so don't ask her how she feels about it. I'm sure in her heart she wants the best for you. Make sure you give her lots of assurances that you will help get her situated before you leave. Try not to enable her, though. Enabling is doing something for someone even though they are able to do for themselves. Wishing you a wonderful future!
Helpful Answer (11)

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.
Helpful Answer (11)

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
Helpful Answer (11)

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.
Helpful Answer (11)

Just be honest, and firm. She cant really expect someone as young as you to sacrifice what could literally be decades of their life caregiving.

If she resists or complains, oh well. You have a life to live, move out and live it! Also big props for being so successful in school with so much on your shoulders.
Helpful Answer (10)

First of all, you are a loving daughter. I am sure your mother appreciates your help since you speak of having a close relationship.

You do need to move forward with your life. There are opportunities waiting for you after you graduate. Even before you graduate you need to be researching and planning for your future.

Be kind and honest with your mom. Tell her that you were glad that you have been able to help her. Tell her that you feel a close bond with her and that is why you feel that she will understand that it is time for you to put forth the effort to ensure a promising future.

Thank her for raising you to become the responsible adult that you have become.

I have two daughters near your age and I want them to live their own lives. That is the ultimate goal In parenting. Your mom realizes that you will need to tend to your own needs.

Look into suitable caregivers that will help care for her needs and I am sure that she won’t feel as if you are kicking her to the curb.

Best wishes to you and your mom and I wish you all the best regarding your future endeavors.
Helpful Answer (10)

It surprises me that your mother is not speaking to you about the need for you to move on and have your own life. It is time for the two of you to visit the doctor, call in social services and discuss what needs to be discussed so that you are able to have a life. I am sorry, but it isn't / should not be required that you give up your life to your Mom. It is admirable that you have done so much. But it is time now. I am wishing you both every luck. This will not be easy and this will not be without pain for BOTH of you. I am just so very sorry. Not everything can be fixed perfectly and without pain.
Helpful Answer (10)

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!
Helpful Answer (10)

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