Just after asking a plucky question on here a few days ago about downsizing Mom’s home, my husband and I have, in one weekend, reached burnout. My husband has been AMAZING in all this. My rock, the over-functioner extraordinaire. And now, he’s done. As in burned out. Compassion fatigued. Over it all, can't muster the energy. Livid with my mom (for whom we are caring) for existing and feeling guilty about it.

We have 3 kids. They need us. One is having a mental and physical health crisis before our eyes and we’ve essentially felt forced to neglect that to a degree we would not otherwise have done without this care burden (I know, no one can force you not to care for your kids as well as you want to . . . hopefully there will be no lectures here on that, but you know, life happens and our best intentions can get sullied).

The situation with mom is complex as my disabled sibling is essentially holding her home and only asset hostage by saying he will not and cannot move out (the latter is untrue, though it may possibly be his belief). I have been gathering legal backup to deal with that. But the whole thing has pushed us to our limit.

We have a board and care lined up for mom near my house, even while she declares she wants to go "visit" my brother and has said she might not come back (a friend has agreed to take her for a multi-day visit--I trust the friend but don't trust my mom to not just get unrealistic about the whole endeavor and fantasize that she can somehow make it work in her house when she was corroding there before I brought her here at the start of Covid to shelter in place with us). My brother was also trying to get her to change her trust and leave her house to him, etc. While she has been here he has pitched to me several times that she should get on medi-caid and go to a nursing home (she is not ready for that, functionally or mentally). He wants it so that she will not need her home, will not need to sell it, and so that he can continue as he is. He has other resources through the State, and if he pursued them he would likely raise vs. lower his standard of living. He just doesn't want to upset his status quo and he doesn't trust "the man" AKA the slight oversight of his potentially unsafe "lifestyle" activities that using his State resources might entail.

Anyway, not to get into the weeks with the situation. The point is, we've reached our limit. We must have her out by March 1st. Whether she goes to board and care or goes and devolves in her home, we need her out.

Any tips for burnout first aid? Whole-family compassion fatigue?

My kids have been over it all for months. They are 13, 13, and 17. The 13-year-olds want their chance at their own rooms finally but grandma is occupying the room. The oldest is about to go off to college (if healthy enough--but this situation may have pushed that child past a point that we can get them well in time--especially since we ultimately can't control their wellness timeline, I only know this situation with my mom has made it worse. Something my mom of course cannot understand even if she talks like she can. Her apathy is insidious and maddening.). We are grieving this lost time with our kids, etc, ect.

I am rambling. But my question stands: Any first aid tips other than the obvious of get her out.

Of course I will continue to advocate for her safety and wellness, even if from afar. I hope she ends up going to the board and care because it will be the best care for her and her only able-bodied child will be nearby. But if she doesn't, I'm going to have to let go of that. Even if it feels like this whole year of caring for her in our home, helping her get medical care, surgery, rehab care etc, will be in a sense wasted if she goes back to her house. And to the unhealthy situation there. I will try to prevent it, but she is not conserved.

So . . . any tips RE burnout and utter compassion fatigue? I hope you can avoid judgement—we did not TRY to bring this on selves.

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By 'avoid judgment' I think you mean "don't fuss at me". Because you know this situation is nuts. Of course you didn't try to bring this on your family, no sane person would, but it's indeed the situation you're in.

There is no "dealing with" burnout. There is no recovery from it until the issue is resolved. Say you drive your car until it runs out of gas. Someone sees you stranded and they tell you the obvious, that you need to refill the tank. But you reply with, "Well, I didn't mean for it to run out of gas. But I just can't refill it right now, it's complicated. How should I deal with it now so I can get home?". You can't. No other option but to refill, right?

Your mother has disrupted your younger kids' lives and helped put your oldest kid's life on hold indefinitely. This isn't an inconvenience to them, it is HARMING them. You can't let this keep going. YOUR KIDS NEED YOU. Mother needs a new place to live ASAP if you want your kids and marriage to survive.

Assisted Living is not the same as a nursing home. They will be able to give her the care she needs. You say she is not ready physically or mentally for that, but If she can't live alone anymore, she indeed is ready. YOU may not be ready, and she may pitch a fit and guilt trip, but there is just no other way around this.
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lealonnie1 Feb 2021
Amen, well said.
I cannot emphasize enough HOW important it is to follow Geaton's wise advice to get a consult with a Medicaid savvy Eldercare Attorney.

Try to deal with facts and not emotions where the money is concerned.

"Mom, we are having a family health crisis right now. Our child needs us and we are going to need to step back from providing you with care and housing.

We will go see a lawyer on (fill in day of the week) to see what the viable alternatives are but the bottom line is that we need to focus our whole attention on X's health right now. You will need to find other arrangements that we can help you with, but March 1 is the hard deadline on this" (or whatever date you have set.

My parents did this with my grandmother when my brother was critically ill. Just state it as a fact and leave the room if she starts arguing or fussing at you.
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Timesavor Feb 2021
Love, love, love the script. So helpful with my mushy brain right now. Very concrete. Like I need to be for her. And like I increasingly need myself :).
There's nothing at all 'wrong' with placing your mother in Assisted Living or managed care of some kind. Your husband and child need to come first so whatever you need to do to make that happen, do it. What's the difference who winds up 'judging' you for the decisions you make? Make them anyway, and don't judge YOURSELF for taking care of your family!

There's no cure for burnout except to remove the person causing the burnout. Admit you're in over your head & make the necessary changes so everyone can get on with their lives. Your mother will be fine once she adjusts to her new surroundings. My mother has lived in Assisted Living & now Memory Care since 2014 and she's had a way better life because of it than she would have had she lived with me and my DH, that's for sure.

Best of luck.
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This is no longer about your brother or your mom. This is about YOU! This is about YOUR HUSBAND, YOUR CHILDREN! How much longer can you and DH allow this situation to continue? You can never make up the time you lose with your family. So how's your blood pressure? Are you excited to wake up every morning? Can you and your DH spend a nice quiet evening together? There are no first aid tips for burnout. Burnout requires surgery. It requires removal of the cause. The “obvious, get her out” is the only solution.

Certainly you will continue to advocate for her, and the first step in that process is following thru with the board and care or assisted living. I wish you luck.
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I think if you are the financial PoA, you and your mom should invest in a 1-hr consult with an elder law attorney/estate planner who is knowledgeable in Medicaid for your state. This way you can give your brother accurate information about him going or staying, and what role your mom's home and assets play in getting her resettled into a different residence without delaying or disqualifying her for Medicaid in the future. Do no make any financial/asset/property changes until you know the impact it will have on your mom's ability to qualify for Medicaid, should she need it (and more likely than not she eventually will). It is possible your state may have some sort of exemption or provision for your disabled brother -- not sure, just saying don't make assumptions and do get professional advice. I wish you all the best and peace in your heart that you, your husband and your children are priority over your mom and brother.
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You and your family are now dealing with what thousands, if not millions of caregivers around the world often have to deal with, and that is the ever dreaded burnout. It usually sneaks up on you, just when you think you have things handled quite well. You are not alone, and I admire your courage to admit your limitations. We all have them you know? Some of us may not be brave enough to admit it though. It sounds like you're certainly heading in the right direction of getting yourself and your family out of the burnout zone though which is good, as your immediate family must be your number one priority. Your mom will have to live with whatever choice she makes for her living arrangements. That will be on her, not you. Just please make sure that you never take her back in your home again. I wish you the best.
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"Even if it feels like this whole year of caring for her in our home, helping her get medical care, surgery, rehab care etc, will be in a sense wasted if she goes back to her house."

Timesavor, beware of the sunk cost fallacy: continuing to do something because of all the time and resources you've already spent on it, regardless of how well it is working NOW.

I think you know what has to happen here.
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Timesavor Feb 2021
Good reminder RE sunk cost fallacy. Thank you.
Listen very carefully. You may be burned out but you are finally thinking with remarkable clarity.

I write because I am your brother: I am disabled (Bipolar) and have been primary caregiver for my mother with Alzheimer’s for two years. You are exactly right, I live in my mother’s home but recognize that I will have other options when she is not well served being here. We went to an attorney at the time of my Mom’s diagnosis (Judith Jones, Manchester NH) and she instantly advised my Mom would need the investment in her home to secure decent care and so we planned accordingly. You are right, your brother will be better off in another housing option. If he, like me, is on disability, he probably cannot afford to maintain his own home anyway. Those are the breaks. You are not getting good legal advice if your lawyer is asking you to wait for an answer to an urgent question. With a few simple steps, your brother’s right to stay in your Mom’s home as a disabled child can be redirected so you have that crucial asset to draw upon to pay for your Mom’s care. That will give you the peace of mind you deserve for your entire family, Mom and brother included. You are thinking clearly and have done more than most. Keep moving, get a good lawyer.
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disgustedtoo Feb 2021
You are a WISE person. and CARING!

In OP's situation, we don't know if the brother was providing any care or just living in the home. I did post a comment which touched on what you said about being able to afford the home. Even if the mother qualified for NH and Medicaid, none of the mother's assets would be set aside to pay for the home (RE taxes, utilities, maintenance, repairs, insurance, etc.) They will take ALL of mom's income and any liquid assets before Medicaid covers the rest. OP said her mother isn't ready for NH (and one needs to qualify for it too, before acceptance and Medicaid will be approved!)

Most likely (just guessing) bro has been living scot-free all this time... Maybe does a few chores, maybe helps a bit here and there, but he doesn't sound like he's been the care-giver (he's ready to dump her into a NH and gimme gimme gimme the house!) Guessing comes from this:
"...fantasize that she can somehow make it work in her house when she was corroding there before I brought her here..."
If the place was corroding, where was bro? (Ahhh, reading a bit further, there's this:
"He can’t care for her. He has very severe physical disability. Is care-dependent himself.")

Thanks for your input! It was well-done and you served your mother wisely.
I think you need to explain to your brother that Medicaid will not accept him living in her house if they are going to be paying for her. Possibly this might be allowed for a spouse but I doubt it would be for a sibling.

I do think you need to get your mother to a facility and then deal with her house and your brother. Perhaps you might hire a lawyer who deals with elder care issues at least to clarify points since your sibling is seemingly difficult. I hope you find solutions for the concerns that your immediate family is experiencing.
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Timesavor Feb 2021
Just to clarify Medicaid would let him stay in her house due to his medical condition. But the house would already be protected from them if we kept the house even if he did not live there, because the house is in a revocable trust. If she were to be on Medicaid while owning the house, what would be hard in our situation is paying the remaining mortgage. Rent payments would technically be income I think (which would be added to her share of cost), and I don't know if mortgage can be paid first before Medicaid gets the rest. I've tried to get attorney to clarify this and haven't gotten an answer yet.
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I’m sorry you’ve reached this point. Your story is one of many similar to it, things start out as good intentions and wanting the best, and devolve into everyone being on edge. But you’ve learned and are willing to change it, that’s great, too many are in the same boat but won’t change course. My only advice is to not feel a need to justify or explain what needs doing or is happening. You know you’re making decisions in moms and your best interests and that’s enough. I wish you well
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