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.
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.
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!
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.
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.
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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