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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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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.
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I'm a mother (a few years older than your mom) of two adult children (a few years older than you). Although we're close, I'd hate to mess up their lives by expecting them to be my caregivers.

I don't know how you should have the talk with your mom about you leaving, but I definitely think you should leave. Perhaps ask your siblings if they will be part of the (continuing) conversation.
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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.
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I think you need to present the situation to your mother as a matter of fact rather than as a topic open for discussion; ie: I'll be moving out and on with my life now mother, vs. I would like to move out now, mother, how do you feel about that? Let her know how much you love her, but that it's important for you to have your own life now in your own home, etc. Ask her how she would like you to help her coordinate her care now that you'll be gone. You can call an Agency and hire someone to come in every day for a few hours, for example, or maybe just every other day. Here is where she can give her input and suggestions.

Best of luck!
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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.
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Sounds very difficult.

Like need says, try to find a caregiver that can help, so you can move forward with life.

Wish you all the best
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My question is, do u feel u have enabled Mom? What does her doctor say about her recovery? Diabetes is not a disabling disease if you take care of yourself.

I think you need to get ur ducks in a row before you do anything. Is your Mom on disability? Is she considered low income? Can she afford someone to come in and help with the drains? Are the drains temporary?

If Mom fits the criteria, she maybe able to get Medicaid homecare. Check with her insurance to see if they pay for a nurse if doctor orders it.

Then you need to talk to siblings. Tell them its time for them to help out. That its time for you to a life of ur own.
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Alva’s suggestion is very good. Accompany her to the doctor if you can so you and she will be prepared to know what lies ahead for her regarding her care.

Lealonnie is correct too. I also feel it should be presented as matter of fact instead of a suggestion. I have always felt more comfortable with this approach because it erases any doubt. It’s clear cut.

Most of all, be at peace with your decision. Please don’t allow guilt to cause you to alter your choices. Stay on track with this and things will fall into place.
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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!
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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.
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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?
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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.
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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....
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Can yo and mom tour local assisted living place near you? That would be helpful too
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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!
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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
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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!
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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.
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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.
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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.
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If you don’t do something, you will be there forever. Your other siblings can take turns helping her.
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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!
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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