Hi,
My mom has metastatic breast cancer (although she’s had clear scans for months). In recent months, she developed a bowel blockage that caused her to lose a significant amount of weight. We finally got her to the right doctor, and she was put on liquid nutrition for three weeks to get her strength up for surgery.
She had refused rehab without telling my brother and I, but we agreed that we could handle doing her TPN line for three weeks. We agreed she would go to a rehab facility after surgery.
My brother splits his time between my mom’s and his gf’s, so he took the week, while I took the weekends (it’s about a 3 hour trip for me one way). My brother could barely handle it, his gf even inferred he would hurt him unless I did something, and it was a mess. I also started a new job.
My mom was slowly improving her mobility, but the surgeon determined she was too high-risk for an operation. She also is very incontinent, especially in the morning, and nothing is helping that.
I have mentioned moving to an apartment instead of a three story house, but my brother steps in and says the incontinence would be an issue and “renting causes other problems.” She has no retirement savings, so it’s pretty much on my brother and I to supplement her SSI.
Last week, she started shaking, which at first thought to be was dehydration per my brother (my mom likes the room super hot). The shaking intensified, so he took her to the ER, where it was determined she had a bacterial infection in her blood and PIC line as well as a blood clot in her leg and a pulmonary embolism.
I called the social worker and told her that, while my mom may say she has people to take care of her at home, my brother and I can no longer do it. I find out that mom once again refused rehab by saying we could take care of her. My mom also said she would do the same for us.
I tell my brother, who says he’ll “fix it” and implies he will quit his job to care for her, which he definitely cannot afford to do. My mom then calls me from the hospital saying she would never forgive me for the rest of her life for calling the social worker.
I have paid for every item that she needs, arranged every food drop off, and literally wait on her hand and foot when I am at her house. I am deeply concerned she is going to get another infection due to the incontinence, and I am limited a bit due to having neck and shoulder problems as well as anxiety.
The social worker said it was pretty much up to my brother and I to convince her to go to rehab, but my brother is not in the best mental place. It’s a mess, and I don’t know where to turn. Where should I go? What should I do? I appreciate your advice.
It's kind of like a person suffering a heart attack who's begging to be left lying there in the bed and not being taken by ambulance to the hospital. It's the same analogy yet when a 'poor sweet old lady' is begging to 'age in place' at home, for some odd reason, all reason is thrown to the wind and the 'children' can't possibly do what's in her best interest by placing her!!!! The 'nursing home stigma' is alive and well, thanks to frightened elders who have weaved a few too many stories about the horrors of 'those places' which aren't like that anymore.
Stop the madness. If your brother is being emotionally manipulated by your mother and unable to see that, then he needs to step back and let YOU handle the placement. Make it happen before BOTH of you are flat broke and losing your homes and jobs for trying to provide your mother's care when Medicaid should have been doing so all along.
You are actually doing her a disservice by trying to manage her critical care at home without the proper medical background.
That's how I look at it when my own mother insists on moving in with me and leaving the Memory Care ALF she lives in. There is no way on God's green earth I am equipped or qualified to handle her care in home! She needs a team of caregivers working in shifts 24/7 to accomplish it! Not little old me and my DH who has more health issues than Newsweek himself! That's the truth and my mother lives where her needs are addressed in a professional fashion.
When our regular guilt-inducing posters come along & tell you to care for your mother at home NO MATTER WHAT, that it's your DUTY to do so, please ignore those comments and focus on the good, common sense replies you've gotten so far. The internet is full of lots of people who feel it's their duty to tell you to lay down your life for your mother b/c she gave birth to you and had 24 hours of hard labor; now it's YOUR turn, your obligation, yada yada.
Wishing you the best of luck remembering that there are THREE lives (or more) that are being affected here by ONE person. The elder is not the only life that takes precedence; your life and your brother's life matter too! Setting yourselves on fire to keep her warm isn't a good idea.
So, she has money of her own and her living with you should not be costing you or your brother anything.
You and your brother are going to have to make it clear to the hospital and the rehab facility that you and him aren't able to take care of her in spite of what she's telling them. They need to hear it from the two of you.
Your mom also has to be made to understand that you and your brother have to provide for yourselves and your families and that means going to a job every day. It's not for mom to decide which of her kids gives up their lives and livelihoods to be her 24 hour a day caregiver.
That's not realistic. Sadly, so many of our parents when they're getting older don't live in reality. Many think they only need a little bit of help when really they need a care facility.
Please talk to your mom's social worker and explain that she needs more care than you and your brother can provide.
Neither live full time with her.
Currently, my brother has chosen to essentially “side” with my mom despite telling me every day that he cannot handle her care. A lot of “I’ll fix it”, “It’s on me,” etc.
The social worker told me that Mom changed when she figured out I talked to her, and told me she didn’t think my mom would ever change her mind. My mom also fought the idea of having PT even thought she has an embolism and a deep vein thrombosis. As I don’t have my brother’s support, I sent them a list of rehab facilities and have decided to step back until the next infection.
The hospital says she’s of sound mind, so there’s nothing much I can do. I think I just have to start protecting myself.
I then said that I was not coming home this weekend, which somehow shocked her despite her saying she was done with me yesterday, and said I was taking a step back. I said that I could not take care of her anymore, and my brother could not take care of her anymore, but it was up to my brother to tell her and the social worker. I mentioned one of the places that even has apartments for a low price in addition to rehab, and she started on about how her home is her home (it is in need of MAJOR repairs that I was not allowed to make per her and my brother). She said she has 3 nurses coming to the house, although the social worker told me she won’t do OT, will only do PT 1x/week, and has a nurse to flush her TPN line (the last at-home nurse that flushed it clogged the line). I reiterated my position and hung up.
Five minutes later she calls and is still crying and says, “I just want you to know how good it is that I found out now that I can’t depend on you and how you refuse to take care of me. What will I do when I’m older?” I told her that, though she may not see it now or ever, this IS me taking care of her. She noted that I won’t help my own mother and hung up.
I know she’s still at the hospital (I can tell through the MyChart app), so I’ve temporarily blocked her number so she can’t harass me.
thank you to everyone. I am REALLY appreciative of your support.
Please know that we stand behind you. You are doing the right thing. It’s not easy dealing with any of this. I am sure that it is quite stressful for you during this challenging situation.
Do you feel that since you are allowing your mom time to process this information, that she will eventually come around, or does it seem totally hopeless and futile at this point?
Your mom is not going to get better, and she really needs more care than either of you can provide. Your brother quitting his job will only make the situation worse, so please don't let him do something so foolish.
And if mom doesn't have enough money for her care, then you will have to apply for Medicaid for her. The social worker should be able to get you started on that. Also your moms care is not your responsibility, meaning that you should not be spending any of your own money on her or her care, nor should your brother.
You are now at the point in moms care where you MUST not only do what is best for her safety and health, but also what's best for you and your brother, and you already know that that means she must be placed in the appropriate facility.
Please don't allow her to make you feel guilty about having to place her, as it is now in her best interest to do so, and in time she will realize that as well.
I'm sorry you're having to deal with all this, but know that there are many on this forum, that have had to place a parent when their parent didn't want to be placed, and lived to tell about it, and were grateful to get back to just being the son or daughter(and not the caregiver)and were also grateful knowing that their parent was now being well taken care of. I wish you and your brother the very best.
Both OP and brother should let mom know what trying to keep her in her own home and doing everything for her is doing to them mentally, physically and financially. See if mom cares about their health and well being too. A parent that loves their children would not want them killing themselves because mom doesn't want to get help for her needs and care that is beyond what either child can do. I am so sorry you have to go through this. Guilt makes us do things the rational part of our mind knows is not doable or sustainable.
I am glad that you are stepping away from this horrible situation. Your brother is going to burn out. I wish that he would step away also. Your mom needs to go to rehab as recommended for her to improve. She is most likely turning it down because she knows that once she goes into a facility, your brother is free from his responsibility. She wants to keep him on the hook, especially since you wiggled free from her hook.
Anyone can read between the lines here and see that your mom is desperately trying to emotionally blackmail her children. Good for you, for not taking the bait. It’s too bad that your brother’s girlfriend or you can’t convince him to follow your lead.
Your brother is unintentionally prolonging the agony and preventing your mom from receiving the help that she needs. Sadly though, he will not be able to quit his job, support her needs, etc. Sooner or later, something will happen.
It’s too bad the social worker wasn’t able to tell your mom, that neither of her children were going to continue accepting the responsibility of caring for her. Then your mom, would know that she was no longer able to use her manipulative tactics.
Wishing all of you the very best. Keep us posted. We care.
You and your brother need to link arms on this and remember first and last that you are acting in your mother's best interests: you both need to tell your mother that you cannot provide adequate care and you are not going to kill her in your attempts to do it.
Yes it's her decision, but the decision she is making is manifestly dangerous and you and brother must accept no part in it. If she can arrange alternative care at home, good luck to her - but she can't force you and brother to facilitate a decision you believe to be wrong.
If necessary (only if you have to) remind your brother of what happened last time he "fixed it." What makes him think he care for her adequately now that she's even frailer?
Maybe he hasn't thought about whether he can or cannot do it..
I hear it too often. I just can't do it anymore! Can't look after him/her. But I have to look after him/her.
And once again they walk the same path & step into the same hole.
LongWays may need to shout "LOOK OUT!!" loud & clear.
Sounds like standing your ground will be HARD. But, better hard now, and maybe a bounce-back, sooner rather than later, when things might possibly be worse. 😩
Pulling for you!
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