I'm a new caregiver to a Mom I have a painful relationship with.

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I have one of those narcissistic mothers, read sociopath, that make a child miserable. I was crying all weekend over our situation. Shes 67. This time last year she was dx with kidney disease requiring dialysis. She started the process to apply for a kidney transplant. Early this year during the process it was discovered that her liver is cirrhotic. Its functioning but she needs a liver as well as kidney. My dad died 14 years ago. Mom lived alone until she was caught stealing from her job. At that point she couldnt receive unemployment, had no income. She took my fathers social security and moved in with her SIL. My mom paid my aunt rent and has been there since, probably 5 years. She worked on and off as a temp and collected unemployment. She didnt pay attention 2 income guidelines for social security and pays 75.00 a month back 2 SSI as well. When we met with the liver transplant team, we learned that after surgery, she will require 24,7 care for 4,16 weeks after going home. This care HAS to be provided by family or friends. Im 39. Sister is 37. My sister wasnt working when we learned this. My sister doesnt have a solid work history. She goes for long periods not working. For years my mom has given her any extra money she had. My mom claimed thats why she was stealing from her job. She was supporting herself and my sister. I knew she gave my sister money but stayed out of that because I felt it wasnt my place. When she was caught stealing, she came 2 me, as usual, for help with figuring out her situation. Its a pattern that repeats in our family. We all have our roles. Im the one who is expected 2 take care of everyone and everything, from talking 2 my dads doctors 2 making sure everyone gets 2 celebrate holidays the way they expect. Now the liver transplant. My sister and I agreed that since I work a FT corporate job, have children, a fiancé and his children, I would be the caregiver from after work until I go back to work in the morning. We would split the weekends. My sister would do week daytimes. My sister lives with her girlfriend. They dont have kids, live in a townhome with a 2nd bedroom and finished basement. I live in a townhome . The 2 boys have a room, daughter has a room, our room, family and dining room is one room. Our kitchen doesnt have room for a table. We eat in the dining room. We dont have a basement at all. When we found out about the 24,7 care, I talked to my Aunt, explained the plan and asked if it was ok if my sister, nurses and I traipsed in and out of the house during this recovery. I told her that we didnt need anything from her but wanted 2 make sure she was ok with my mom staying there. I didnt expect in a million years shed say no but she did. She has reasons but said mom could return after recovery. I said I understood and looked for alternatives. My sister has refused 2 take her in and at that time, my sisters girls brother moved into their spare room. Because of the awful relationship I have with my mom and lack of space at my place, I said she needs to get an apartment. Thats when it all got ugly. My mother started pretending she doesnt know how 2 look for apartments and my sister refused 2 help. She uses every excuse. She has ADHD, she has dogs 2 take care of, she needs 2 look for a job, gay relationships are harder than hetero ones. All reasons why she cant do whatever it is that needs to be done at the time. My mom being her sociopath self would lie about what she was doing 2 help. She claimed to apply for low income housing. When I tried to verify, she was not on any lists.I know I should have done it myself It finally blew up. I lost it on mom and sister and said I wouldnt handle any of this. I told them 2 contact me when it was time to move into an apartment or for a transplant team appointment. 2 months later, mom ends up in the ER. Shes ok now but I find out that nothing has been done. Even in a life or death situation, they cant step up. Since last week, Ive found an apartment and cosigned. Waiting to hear back. Ive taken over the money and am trying to get everything in order. My mom has 2 give up her car 2 make this work and shes mad. Ive been a wreck over this. My mom has been cruel to me since childhood, shes malicious, entitled and a nasty woman and NOT just cause shes sick. She coddled my sister though and wasted money she could use now. Yet Im left to deal with this. Ill need to kick in money to help my mom. My sister has already let me know she cant help with money at all. I have family that feel Im not doing enough. Maybe my perception but Ive heard, YOU cant just let her die. Its so hard to think about this and its only just begun. Im angry and resentful already. But Ive read many of your posts and it helps. I feel like here people could understand my feelings and not attack me for saying what seems callous to someone who isnt in these shoes. Thank you

15 Comments

I apologize for the crazy grammar. My system wouldn't allow me to post unless I took out all the special characters. That included apostrophes I finally figured out. :-)
Embella, nobody HAS to provide care to anyone in the US. Lincoln freed the slaves a long time ago. Yes, she has to have care, but it does not have to be family or in anyone's home.

YOU do not have to kick in money. That is wrong information right there. Your mother's assets pay for her care until there are none and then she goes on Medicaid. I don't think I would have cosigned anything because that places you in a very liable position money-wise. Do not become joint on her accounts. Do not pay her bills. Do not take on her debt because you don't have to and it will only use up your money for your life and you'll have nothing to show for it.

I am the adult daughter of a borderline/narcissist with a host of other psych & medical problems. Due to this sad reality, her care in my home was never an option. I did it for almost a month until her senior apartment was ready, but that only confirmed what I knew. She needed to be in a place where her mental illness and her dementia & medical problems could be managed. She needed to be where she would be safe from herself & the world.

You need to find a social worker ASAP. In the hospital, there should have been one to help coordinate discharge and transition. If you don't have one contact your local area agency on aging and request an assessment immediately.

You will also need to see an elderlaw attorney to sort out mom's affairs and make sure the legal paperwork is done correctly. My mother wouldn't plan and was so secretive with everything until it was too late to put any helpful changes in place to earn more money, protect her assets, or consolidate things. So it goes. Her estate is paying the legal fees necessary to make me guardian (vs just Power of Attorney) and deal with a future sale of property. This is money that won't go to her care. Oh well.

My role was to step back and treat this like a job for a client. I put my personal boundaries in place and I think I'm stronger for doing that. There have been more ups, downs, twists, turns, and loops on this ride than I thought possible.

But you can do it. You should come to this site to get information on how to proceed and to vent. People here have been through it all and then some.
Wow, Embella, that is a horrible situation all around. I can imagine how hard it is to establish any kind of boundaries in this type of situation, when it could actually be the difference between life and death. When I hear your sister's list of reasons why she can't help out, I can only think that she sponged off your mother's money, money that could have been saved up to provide for care.

The idea of providing 24/7 care for a period of weeks, even split between two family members, seems very daunting to me, especially when one of them has a full-time job and children. If it were me, I would not agree to that unless there were many more than 2 people to do the caregiving. Maybe you could talk to somebody involved with the transplants and find out if there is some kind of free home care (or Medicare- funded rehab) that your mother could go to after the transplants.

From another angle, what do you think are her chances, at her age in her state of health, of being approved for a joint liver and kidney transplant. I thought the waiting lists were miles long and it was never a sure shot to get approved before the person died of their disease. What did the medical people way about her chances of approval and the expected timing?
Thank you so much for this! I've never even thought about going to see a social worker to advise me on this. The only one I've talked to is the one at the University of Chicago and he's just focused on getting her on the transplant list.

I probably should have explained the after surgery care plan a little bit so it made more sense. The transplant team at the University of Chicago will not accept a care plan that involves a rehab center or nursing home. Even though medicare pays, it's not a healthy enough environment due to so many other people, especially sick people (transplant patients have no immune system from all the anti-rejection meds), being there and their experience is the care isn't adequate. Because there aren't enough organs to go around, they have these policies in place to get the best possible outcome. That's why they state the 4 to 16 week recovery needs to be at home with a caregiver.

I thought about that with the cosigning and I read even if she doesn't live to transplant or after, I'm liable for the lease. It's just all so overwhelming and with everyone looking to me to "not let her die" I feel like such an awful person if I don't just try to get everything handled.

The other bad part is she has NO assets. Nothing. No money. No 401k. No savings. Not even furniture. She gets her SSI check and that's it. It's not enough to live on.

And being the way she is (like your mom), it just makes it so frustrating. Like how to do you find the whatever inside you to set boundaries, not feel guilt, not listen to other people who feel they'd have done this or that, be guilted by people....all of it? It's interesting that you used the word secretive.I think that's one of their traits. My mom's the same way. I always suspect it's to cover her lies.

I'm going to get with my county now to see if they have social workers to help with this!!
If your mom is 67 doesnt she have medicare? They should provide the "100 day rehab" for her post surgery? Please check that out!

How does a person who has not worked possibly afford to pay for a transplant? I was under the impression that neither medicaid nor medicare will even touch those procedures?

Mincemeat, I was wondering about that, too, regarding Medicare. This is what I found about adult transplants. https://www.medicare.gov/coverage/transplants-adults.html
Embella I am so sorry to hear about your 'mom' and I completely relate (ie: Narcissistic mom, no help from siblings, having (had) a fiancé, etc.) You have been assigned as 'the fixer' in your family. I was assigned the same role and once that role has been thrust upon you, its so very difficult to reestablish your own life. That role cost me my relationship with my fiancé. Whatever you do, protect yourself and your relationship with your fiancé. Since you're the fixer there will always be new family members that will lean on you without concern and care for you. I fell into the 'fixer' role very early and its been incredibly damaging and life altering. Use social services in your community, keep yourself healthy (it will take a physical toll on your body as well as an emotional toll). What I started doing and it helped, (but its a very, very slow process), is; I assign 'jobs' to the lazy and useless family members. Just small tiny little tasks, to start getting their mindset to a different state. Less dependent and start building good practices of 'helping'. Take care of yourself. :)
I stand corrected on the transplant...thanks frequent flyer....but paying 20% of the cost of this will be enormous!

Embella, are you getting the transplant info directly from the physician or from your mother?
Wow. Thank you. All this is so helpful!

She's going to get the bcbs supplemental plan that covers as much as possible. Open enrollment is October. I keep checking in with the insurance lady at the hospital cause of all my questions.

It's funny you asked about the prognosis cause I wonder about that too. They say that once she's on the list it could be the next day or 3 years. She's placed on the list according to her MELD score which considers factors to determine how sick she is. Because of her age she's also ok with taking on certain risk factors when getting a liver. They have this amazing system where they pick matches based on certain criteria. If there's a beautifully pristine liver from a young person available they won't give it to my 67 year old diabetic mom with heart disease. They want the most use of out it. So because of her conditions she could get a liver and kidney from maybe someone older or someone they don't have a background on. There all these statistics and averages but at the end of the day we just don't know what will happen. Her disease is progressing and she has hepatic encephalopathy which means ammonia builds up in her body but that's managed with medicine.... Medicine she admits to changing up because of the side effects.... (Another argument we've had).

Abusedbymom, I feel bad for you! That sucks and don't you feel like you've had this loss and it hurts because our parent doesn't even care. If she's anything like my mom shed even gloat if I lost my fiancé.


I feel like just reading this stuff and what you all wrote has helped. I reached out to our county to see about a case worker to help me with this and I called the bank about a power of attorney instead of just putting me on the account (thank you Sandwich!). It's so easy for other people to give an opinion but most don't have all the facts or aren't like you all and caregive. I do not like my mom but I know other sick people (and my dad was sick before he died) and I knew it was hard for him and scary and he'd take his frustration out on us. And occasionally I lost my cool but a lot of the time I was understanding. With my mom there's just this attitude. She's actually dating. Dating. A guy she met online a couple months ago. I was trying to fill out paperwork with her and she was texting her boyfriend and ignoring me. It's infuriating. And if it was new behavior or dementia, I'd get it but this is how she's always been.

I'm reading how people caregive for years and 1) God bless them. Really. 2) There needs to be some kind of help. I know there's only so much government funding to go around but carrying this burden is awful for someone's quality of life.. Or lack of.





Oh Embella, first of all you need to get some counseling for YOU, so you can learn to set some healthy limits with your mom and ditch the guilt. If my mom was texting her new boyfriend while I was trying to help her fill out paperwork for her own liver transplant, I'd be outta there in about 5 seconds. You do NOT need to rescue your mom. She's old enough to take care of herself. She's made some very bad choices in life and continues to make them. As long as you come rushing in on your white horse to save her, she'll never change and neither will your sister. It's probably too late for your mom to make many changes in her personality, but your sister is young enough to learn some responsibility.

Put the burden on your mom for planning her aftercare. That is NOT your job! She's only 67. I'm 64 and handle all of that stuff for my 95 year old mom and for myself. Your mom should be taking care of YOU at this point in your life. Get some counseling so you can learn how to set good limits. You need put your own immediate family (fiance and children) first on your priority list. Mom comes a distant third or fourth. Hugs to you!

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