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I am the caregiver for my mom. I have 2 siblings who I spoke with and asked for help because my mom needs a double lung transplant and it seems too much for me to handle alone. I never wanted to be her caregiver, she has never been a good mother. Not the kind that says mean things but the kind that is self involved, depressed all her life and always saying things like "If I could I would help you" and she expects me to say "oh well, you weren't there for me but at least you wanted to be" No, I don't buy that lazy parenting and I really dislike her for hiding behind words.


I would actually rather her be nasty to me so I would not feel any guilt for not liking her. She's the victim always and never takes responsibility for how she makes me feel. She doesn't help herself, I have to care for everything for her. I have to see her eat unhealthy even though I've asked her not to. I have to see her watch tv all day and not even try to learn english so she eventually becomes independent. Her getting new lungs feels like so much more work for me and it's all for her to just sit on her @ss and say I am not able. She'll be a burden on me for the rest of her life, why would I care to prolong that?


I am pregnant now and all this resentment is preventing me from being happy and I take it out on my husband. I am willing to say now that she has to leave my house and ask my siblings to help pay for another place for her to live. They might not have the money but I can't just tell the doctors I am no longer helping her with the transplant and continue to have her in my home dying. That is too much for me to see happen in my home. I have to care for my sanity and my baby on the way and I feel crazy and angry all the time.


I don't really need for people to reassure I am not a bad person because I know I'm not. I just want to know what to do when thoughts of regret start to come because I hear her coughing and I start feeling guilty and I can actually go through with enforcing my boundaries. I know the consequences will be her dying. I feel like that's her choice in the end but it's hard to do because she hides behind a helpless poor sick woman unable to care for herself. Maybe now she is actually helpless but before when she wasn't she did nothing to not be a burden to me so I am so sick of it.

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After spending years care giving for my Dad and being involved with moves through IL, AL and to NH, I've seen how important it is for people to take care of themselves so as not to become a burden. The boomer generation will have no excuse because we have all the latest info on health care and anti aging stuff.
As for myself I know I'm sick and tired of being sick and tired and am determined
to get in the best shape I can.
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Reply to bettina
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Do they do a psychic eval before a transplant? Because it sounds like to me that she isn't going to follow instructions when the time comes. I understand she will need to be with you a while more. But I would continue to plant the seed that with a baby on the way there will become a time, she will need a place of her own. You will not be able to care for her ans a infant. You need to enjoy and bond with this child.
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This is a bit of an “aside” comment but something you said struck a cord with me.

“ ...(she) never takes responsibility for how she makes me feel”

I, as well had a mother who was self absorbed. Incredibly self absorbed. However- although most of my mothers meanness was accomplished in a passive/aggressive way or implied
through innuendos - on occasion it was done verbally and in a very straight forward manner.

Rarely - due to the fact it was pointless - but once in a while I would try to talk to her about some mean comment she had made to me.

What I would get in dismissive reply was “Oh Rain, you’re so overly sensitive”. Which turned the original insult into a double insult.

Thus, I began to understand that my mother would never take responsibility - and in turn - I had to take the responsibility for the way she made me feel.

Just saying...
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jacquelineb Jan 5, 2019
Yeah apparently I was an overly sensitive child too. I recently spoke with my dad about some of the emotional traumas I went through with him and my mother. I gave him examples of occasions in which he said things that scarred me emotionally to illustrate their inability to care for me in the way that I needed. He responded by saying "I had no idea you were so sensitive". My point is that the adults in my life were responsible for my emotional well being, and they should not hide behind blaming me for how they've made me feel. Now as an adult it bothers me to hear that my mother tells people I am too moody because I am pregnant and instead she should stop and think if she's helping the situation. Especially because my "moodiness" seems to arise after I tell her that something she did bothered me. The only reason why I still speak to her and try to ask her to stop certain behaviors is because she depends on me for everything and I deserve consideration and compassion as much as she does. It always falls on deaf ears which is why I am okay finally accepting that this relationship has to either change or she is out of my life. I refuse to become a martyr and complain forever to gain validation and sympathy. I hate when people tell me I am doing good or thank me for taking care of her. They can have her in their house and I'll be the thankful one to them. I bet nobody will take my position because words mean nothing without being followed by actions. Those people who are so thankful should offer to ease my load or shut up. You know, more than words!. What you are referring to, sounds like a coping mechanism you can apply, to sugarcoat the fact that the relationship with people like this is toxic and you need to stay away. By constantly denying that her behavior hurts me, I don't do myself any favors. I don't get to live a different life by thinking I will not give the power to people to hurt me, they simply do hurt me and I must protect myself from them. I just have to surround myself with people who are able to think about the other people in the relationship and not just themselves.
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Getting a double lung transplant is a very big deal and this is the reason they take caregiving and living situation into consideration before putting someone on the list. She will be on medications that suppress her immune system for the rest of her life and she will need to be an active participant in physical therapies after surgery to regain even her current level of function. If your mother's commitment to keeping herself healthy after getting her lungs truly is lacking she will unlikely benefit from the transplant long term. With organ transplantation there is also the moral issues of her getting lungs that could go to another patient who potentially would have a better quality of life following the transplant. I strongly encourage you to have a very open and frank conversation with her transplant social worker or doctors about your current living situation, your concerns about your mother's willingness to follow medical recommendations and the limitations you will be under as a caregiver to both your mother and a new baby. Choosing a palliative care/ hospice route instead of the transplant route can sometimes be a much kinder path and often comes with additional support resources in the home if you do decide to keep her with you. Transplant will not be a "cure" for your mother's medical issues it will be trading one set of chronic medical issues for another and it is okay for you to say that you are unable to be the Caregiver that she will need to take that path.
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jacquelineb Jan 5, 2019
Thanks, believe me I have this moral dilemma as well. I start sobbing when i watch successful stories from people on YouTube. People who go and do something with their second chance, I even saw one become an opera singer. I feel this responsibility to say something. Last appointment i told the social worker and the dr who was deciding wether to put her on the list or not, about her apathy. He lectured her and I guess they are onto her. I am sure something definitive will happen after we talk to my mom one more time tomorrow and lay down the new rules. I also think the best thing for her is a place where she can just retire and let the disease take its course. Sad but true, as of now, she’s not worthy.
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Have you tried to make your mother be responsible for her care? Your post above states she doesn't help herself, so I'm sure the answer is yes. Perhaps an adamant talk with her that she's responsible. It sounds like her mind's functioning though she wants to toss the responsibility onto you.

Impress on her you have your hands full and she needs to step up. I know she doesn't speak english, from your post. Assist her in finding her own resources, social workers, Agency on Aging, Medicare/Medicaid, etc. Perhaps your siblings can assist in helping your mother help herself.

Good luck.
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jacquelineb Jan 5, 2019
Yes I have and she says she's unable. I decided to take her disability money and give her an allowance now. This money will be used to pay a caregiver for when the time of her surgery comes. I will also require that she studies English while she is under my roof so that eventually I free myself from being her interpreter. I will not assist her in finding resources because she won't and she'll expect me to call and fill out forms and such, i just can't deal with that mess. I already had to fill out forms that were in Spanish because she claims to not understand. My siblings are on board with this plan I created. I told them that while she lives at my house I am no longer handling her mail her phone calls or anything else so they have to now. Since I delegated that without asking them, they have an interest in her learning English as well now. They have an interest in keeping me in their life so they decided to support me and we'll speak to my mother tomorrow. Sometimes when you are nice people don't take you seriously but I am glad that my siblings at least seem to care to not lose the relationship with me. She won't like any of it but she doesn't have to, she has not being concerned about me all her life so I am done putting my needs as second.
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She is on the transplant list already. I know it has crossed my mind from the education classes that she should not be around kids. I guess I always dismiss the thought thinking that my house is not that small so they don't need to interact. The resources available cost money as far as I know. My siblings support me on my decision to give up since they don't plan on spending too much energy helping. I know the job is for my mom to convince them that she is a pleasant person to keep around but she does a poor job at that. I convinced them to give her one more chance while they actually help me and we'll speak with her in a few days when we can all get together.If my siblings decided to quit because our mom doesn't change, then I can quit with the peace of mind that I tried for years and I just can't prolong the inevitable by breathing for her for the rest of her life.
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Reply to jacquelineb
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When she is in the hospital for surgery would it be possible to contact a social worker and tell them you are unable to care for her in your home after surgery and she will need to be placed in rehab and a care facility. That is the truth. With a baby you are unable to care for her.

Who will care for her when you go into labor and for the first few weeks afterwards?
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jacquelineb Jan 3, 2019
They have said that she can only be put on the list for transplant if she has a caregiver. I have talked to my siblings again and told them that I am done asking everybody to help, even my mom. Now it's time for action and if nothing changes then I at least I know I tried. They seem responsive so we'll see.
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A double lung transplant?

How far has this suggestion got? Is it actually on the cards for your mother to receive this?

Whether your mother is seriously going to become a transplant recipient, or whether her chronic lung disease (which is what, by the way?) is terminal, a household with a new mother and baby is not the right setting for her. Quite apart from anything else, little children are Petri dishes of infection and your mother is or will be immuno-compromised. Work on finding a much more appropriate and better-staffed environment for her.

What are your mother's resources? What is available in your area? What advice are you taking about how to fund her ongoing care?
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Reply to Countrymouse
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jacquelineb Jan 5, 2019
She is on the transplant list already because she has pulmonary hypertension in combination with other things. I know it has crossed my mind from the education classes that she should not be around kids. I guess I always dismiss the thought thinking that my house is not that small so they don't need to interact. The resources available cost money as far as I know. My siblings support me on my decision to give up since they don't plan on spending too much energy helping. I know the job is for my mom to convince them that she is a pleasant person to keep around but she does a poor job at that. I convinced them to give her one more chance while they actually help me and we'll speak with her in a few days when we can all get together.If my siblings decided to quit because our mom doesn't change, then I can quit with the peace of mind that I tried for years and I just can't prolong the inevitable by breathing for her for the rest of her life.
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