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.
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.
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.
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.
Best of luck!
Like need says, try to find a caregiver that can help, so you can move forward with life.
Wish you all the best
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.
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.
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?
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.
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....
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!
It's unfair of your siblings to not really help and expect you to do it all.
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.
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.
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!
to approach things.
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.
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.
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.