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.
You are NOT being selfish. You are definitely doing the right thing by stepping back and clearly stating that this situation is way over your head and that you just can not be a party to it anymore. Boundary setting is very hard and I commend you for doing so.
I would let your brother know that you can still be there for him, but will not be physically caring for mom or paying for ANYTHING or whatever. You believe she needs to be in rehab, case closed. Encourage him to speak to social worker and get mom the help she actually needs to be safe and healthy (healthier?). You do not have to do things that you think are wrong and not in your mom's best interest.
This is kind of a train wreck and I'm sure it will come to a head quite quickly. Maybe when she ends up in the hospital again, brother will be ready to also draw a firm line in the sand. Mom, I care about you and you need much more help than I can give you at home.
The help she will be getting from visiting nurse, etc. sounds quite minimal and will do very little to help the overall situation.
Good luck. Stay strong.
Your brother is the key person here. As long as he won't refuse to take care of your mother, I don't know what you can do to change the situation.
But you are on your way to changing this situation for YOU! Your list of what your mother needs to have done for her is quite daunting. I'm unclear, as your brother (and gf) are there during the week? Is this overnight? Are they living with your mother?
Keep us updated. Stay strong!
I went through it and saw that she agreed to some nurses visiting occasionally, but I know her and know that will last two weeks tops. I texted her I loved her and goodnight, and texted my brother this morning that I don’t know when I’m coming home again.
I’m just worried that it’s me being selfish because I don’t want to clean up her accidents and do everything. The fact she had sepsis + the DVTs and PE scare me though. I had multiple PEs a year ago, and I know how hard that recovery can be. On one hand, the idea of not having to do everything feels nice, but is that just being selfish? So many of her issues are invisible (the clots, the sepsis, etc.). My brother also thought her sepsis was dehydration. Will the fact I’m not there kill her?
I’m so deeply appreciative of all of your support. I have a cousin I can talk to, and I’m trying to find a reasonably priced therapist, but you all understand it. I’m not a big praying person (my family is ULTRA religious), but I’m praying for all of you.
If so, step out of reach. Advise him to seek help instead (Lifeline, his Doctor, his Church).
All things come to an end. It may be your relationship with your Brother takes a beating over your Mom's health. If so, the future is a place you can hopefully restore it. From the future he may then gain new insight to look back upon this time.
Since your resources are limited, please ask your brother and mother to work with you and social services. Your mom needs whatever care the social worker can arrange for your mother. Payment for these services should primarily come from your mother's resources. Rehab would be my primary recommendation since she would be there for restorative care and have nurses to care for the meticulous tasks. The goals would be to get her well enough for surgery or to go home. If mom doesn't want any treatments, then hospice should be an option that is discussed with her. Hospice doesn't seek to cure medical problems, but to provide comfort. Hospice can be provided in a rehab facility or at home.
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?
I posted earlier. I would like to add a few thoughts.
Mom is playing hardball. She is doing her very best to win the game. Step up your game.
You and your brother can win if you come up with a good strategy. I feel the same way as Countrymouse. Pitch the entire situation back to the social worker. The social worker is supposed to have mom’s best interest at heart. I know that you and your brother want what is best for your mom too, which is why you realize that she needs more care than you can give.
Make it absolutely clear to the social worker that after giving this issue much thought, neither of you are willing or able to care for your mom. See what the social worker that deals with these issues has to say!
Wishing you all the best.
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!
What daily help would Mom need at home? Can she arrange to get groceries delivered, cook or reheat pre-packaged food? Can she toilet & wash herself independantly? Get from bed to chairs, walk? You could ask she be assessed by OT or PT to see if all that is possible.
Make it clear to Mom & hospital staff what you will & won't do. Eg WILL drop in supplies, WILL phone everyday but WON'T live there - whatever you decide. Brother may decide his own limits.
This equation of her function level + family support level will = whether home is possible, or home with hired home help or rehab.
If she does just meet the threashold to go home but cannot cope she will rebound back to ER fairly soon.
Unfortunately sometimes it takes people a round or two of 'acopia' to adjust & accept their situation 🙁
She needs:
- TPN/liquid nutrition every day - this includes mixing the bag, measuring the syringes, testing the nutrition, etc.
- cleaning the TPN lines - that happens at the end of the twelve hours she’s on the nutrition. We were told the TPN line would be for three weeks in May. Now the surgeon is saying that it *could* go away, but will always be close to being used again and she will be on it for “weeks, if not months.”
- incontinence - there is a commode, but there are accidents. I’ve tried timing commode trips, new diapers. She has a very distended stomach from previous surgeries and thin legs, so nothing fits 100%. I buy the pads and diapers.
- laundry - laundry is in the basement. If we do not do her laundry, she washes it in the kitchen. She will not accept a portable washer/dryer for the kitchen.
- moving around - she will move around once a day, which will be a problem now that she is recovering from blood clots.
- eating - she is on a liquid diet with some soft foods as of yesterday. We have now learned that her diet going forward will be liquid with some very soft foods. I buy the food.
- bathing - bathroom is upstairs, and she will only let me wash her. If not, she sponge bathes. To get upstairs, someone needs to be behind her so she doesn’t fall. I buy the soap and the wash rags/towels/hair products.
- getting changed - clothes are in the dining room (we have the living room, dining room and kitchen on the first floor).
she was able to stand with a cane and make food before this infection/blood clot situation. She had also fallen back in November and was on the ground overnight (she’s had a partial hip replacement in December). She called me for help and I had to rush home while calling my brother and cousin to break the door down to get her.
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.
So you both tell the social worker that she will have no help at home. Your brother and you must both step away.
Why won't you? If it's (misplaced!) guilt, then consider the guilt you will feel if your mother dies the next time she gets brought to the hospital with issues that you and your brother did not discover.
Please do the right thing for your brother and yourself. You are 2 in this 3-way issue, and the rights of the 2 outweigh the rights of the 1.
edited to add my brother is saying he’ll “fix it,” so he’s not telling the social worker he can’t do it.
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.
Your Mother has reached hers already. Her care needs are too high for her to self-manage.
Her care needs then exceeded what her adult children can provide.
You have tried to tell her but she so far she will not accept it. A good Social Worker/Councillor may help her accept this & explore her feelings of denial/anger/grief. Or fear. You can remind her she is loved, whether she is at home, rehab or other.
Your Brother has taken on a Rescuer Role mentality but also has met his limits. Cannot do it alone. He too will need the courage to face that, to accept his cannot fix it all. And that's OK. He will still be a 'good son'. You can discuss with him. Like in the Westerns, that The Sherrif usually has his posse, his team - not just one-man (& his horse).
So while you cannot change either Mother or Brother, or make them understand your side, you can decide what is reasonable for you - as you have already said. I think you are moving yourself into a great advocate role with grace, compassion & clarity. By a little stepping back (out of guilt) & into the light where it is clearer what is yours to control & what is not.
Strength & (((hugs))) to you for the journey.
PS I think some in mine & DH's family are still trying for one-man teams & want a work-horse to delegate tasks to. They do it from a place of care, wanting to arrange the care tasks, but disregard the horse! The big barrier to change was accepting non-family help. Check-in with Bro & Mom if this is a barrier for them?
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.
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.
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.
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.
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.