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.
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.
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.
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.
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.
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.
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.
Stress studies have been done on "sandwich" caregivers who are caring for both younger and older generations and scientists deemed that group the most stressed. I don't remember the details but researched about this a few years ago during my own caregiving time. That level of stress is a killer; may not happen quickly but it's definitely detrimental to your mental and physical health.
You can't sink your whole family because your mom's situation has to change. As difficult as it may be for you to accept, if the choice is allowing your mom to return to her home for now, or running you and your family ragged trying to help her, maybe allowing her to return to her house for now is the better option. And have you considered having adult protective services evaluate her in her own home and make recommendations? That could force the issue, if mom is unsafe in her own home. You could call APS in the minute she's back in her house and tell them your concerns. They will send someone out to look in on her.
I don't know if I'm interpreting your situation accurately but just wanted to add some thoughts here.
Many of you mentioned seeing a medicaid savvy Elder Law attorney and I have engaged such an attorney.
That said, her time is limited and my brain has turned to mush since the moment mom arrived and then a whole bunch more as we've reached burnout.
SO, could I run by you folks the questions for my attorney?? I am running this by my spouse and others, also. But he has not been in this rodeo before, nor have I.
I know these questions are not directly about getting mom out of my house. That is plan A, but plan B will be moving forward with the strategy for her care because she only has about 3 months worth of care in her bank account. So these questions are about plan B. I will need a viable plan B in order to comfortably enact Plan A. That said, I have set our plan A deadline for March 1.
Background Info for Questions:
Goal: Figure out whether to sell mom's home or keep it. (California, FYI)
FYI: If we sell, we have a legal strategy to proactively address my sibling's potential refusal to leave. This strategy has mom's needs as pre-eminent (as this is her Trust/home/property) but also considers my brother's needs. He may hate it and fight.
PROS/CONS:
Pros of selling: much easier to manage investments than a property, eliminates the very thorny issue of dealing with my brother in the property, also propels him to become independent for 1st time in his life which could end up improving his standard of living--my mom always feared and avoided launching him from nest. Last but not least, selling seems better way to reduce hassle/stress for me and my spouse/kids.
Cons of selling: Capitals gains will be $150-200K , the remaining ~$500K cash will be in a Trust for her but $ in trust is not sheltered from Medicaid lookback. Less or zero money gets passed on to us 2 heirs: brother's special needs trust would get less to zero. No other windfalls likely (but it's not our $!). Less inheritance potential for 3 grandkids.
So. . . my draft of questions for attorney (who is helping me manage mom's Trust, with Elder law credentials):
Great, Ms. Attorney, thanks for confirming that our "if we sell" strategy is solid. Now, could you please remind/advise me on the pros and cons of selling mom's home as far as planning for potential future Medicaid-funded nursing care? I want to be completely sure selling is the best of the options before we pursue "the strategy."
QUESTIONS:
--If we sell, what strategies will be available for Medicaid spend-down?
--how would addressing such strategies look given that we might have around $500K in a lump sum sitting in her Trust--and being spent monthly at a rate of 5-6K-- that would need to be "spent down" before she qualifies for Medicaid if/when needed.
--help me work through/plan where I can get the guidance I need to think through the management and life-stress trade offs involved in selling vs. holding her property.
--Are there creative strategies I have not thought of to avoid some of the pitfalls of selling the property, such as capital gains tax?
--What are these strategies and if there are any good ones, how onerous would they be to implement (example: are 1031 exchanges a big fat hassle? We'd have to rent house out first, then "exchange" into another property or qualifying investment in a very short time, etc.)?
Also with respect to the property, I would just add, for those who MAY wonder:
--small 1K square foot house on large property, plus small unpermitted studio apartment (low rent dwellings in high rent area)
--house built in 1940s, few improvements
--Best case monthly income scenario on the property if we kept it would be that the property minus expenses to keep it would just barely be enough (with maybe $200-$500 left over) to help with mom's extra expenses beyond her board and care AND for property upkeep/repairs.
--house is 2-3 hours from where I live.
Your brother has documented special needs? Why would his trust go to zero?
If he has been providing care for mom, he might be able to stay in the house; need to consult attorney on that. But of course, he would need to be able to pay the taxes, utilities, etc. Because on Medicaid, ALL of mom's funds like pension and SS go to AL or NH.
Don't overthink this. Let the attorney figure this out.
I have to stay focused on a plan that will best support mom as the foremost goal. But also that won’t run me ragged. This is the conundrum mom could never bring herself to find a clear solution for—especially if it meant confronting his extreme entitlement. She worked her life away for him of course, but he’d be happy with her on Medicaid in a SNF now if it meant he could stay put. He’s asked me to make that happen, and more. He wants to start monetizing her assets for himself and he wants us to avoid spending money on her care to preserve more for him and avoid sale of house—so he can have it to either live in or sell and keep proceeds for himself. He asked her to change her Trust right now so he could have that. I didn’t want to get into the weeds on his scene but that’s it in a nutshell.
the lawyer.
You said your disabled brother is capable of moving out. So, I'm going to assume that his disability is not physical.
Would he be able to care for mom in her own home? If that's what she wants and of course if she's still mentally competent to make decisions for herself?
If the home has already been put into trust and it's been so long enough that the Medicaid look-back period won't affect it, then it will not have to be sold to pay for her in a nursing home.
If it gets changed and put into brother's name and she needs a NH before the five year look-back period is done, it will have to be sold. Does your brother understand this? The home is a protected asset until it gets sold. Then the proceeds will go to paying the board and care or nursing home bills. Why hand it all over to them? Unless it's a million-dollar mansion the money a sale brings in will likely only pay for a few months.
Maybe you, your brother, and mom need to talk to someone in your state's Department of Social Services. If mom's income is low enough for her to qualify for Medicaid, she will be able to get some homecare services to help out and they will pay.
Your state may also have a family caregiver program in place where your brother can get paid to love there and be her caregiver. This way everyone can get something they need and want.
Try checking these things out first before setting it in stone that the home gets sold and mom gets put into a facility. burnout and As for your caregiver burnout and your husband's, well you ain't seen nothing yet, sister. If your brother is willing to take on the burden, then more power to him and you should consider yourself lucky.
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.
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.
Let you mom decide if she wants to go back to her home or a Senior Living Facility.
It should be her choice as she'll be the one living it.
Please keep in mind that Senior Homes are not always what they try to show and make you believe.
If your mom still can function feeding herself, dressing herself and fixing her own food even if it's just microwave, she would be happier in her own house.
There's plenty of time later for the decision to move to a Senior Home.
She has her Freedom to do what she wants in her own home.
At least with your brother living there, she has company and someone to call 911 in case of an emergency.
IF she has the cognitive ability to make a SOUND decision. We don't know enough about her capabilities, but this sounds like dementia is at play:
"...fantasize that she can somehow make it work in her house when she was corroding there before I brought her here..."
"...function feeding herself, dressing herself and fixing her own food..."
There's a lot more to being able to self-care than just dressing and eating. Again, we don't know enough to suggest this. NOTE: my mother had been reduced to microwave dinners and boxed crap. Could she survive like that? Perhaps, but just before the move to MC was scheduled, she "bruised" her shin. Never told one of us, only mentioned it to a neighbor who called and told me. It was MORE than a bruise and had developed into cellulitis. Even though I went several times/month (she didn't live around the corner), I would NOT have known as I wasn't in the habit of inspecting my mother's body (rather invasive, you know?) If we hadn't found that when we did, she would have died from the infection.
"There's plenty of time later for the decision to move to a Senior Home."
Without knowing her mother's full status, WE don't know this either. She could be overdue for a move.
"She has her Freedom to do what she wants in her own home."
Burn it down? Let it become filthy and uninhabitable? Wander off?
"At least with your brother living there, she has company and someone to call 911 in case of an emergency."
From the description of this brother, it sounds like he isn't responsible. Would/did he keep her company before? Would he be watching over her well enough to know there was an emergency? Bro sounds like it's all about him - sign the house over to him and dump her in NH... (on top of that, reading on I found this: "He can’t care for her. He has very severe physical disability. Is care-dependent himself." So him caring for her is out.)
NEITHER of my brothers were like OP's brother, however I wouldn't have wanted my mother staying with either one. OB has no patience and is abusive. YB is IMO flighty, doesn't think about much of anything or forgets to do things. Nope. After finding out how much MC costs (surprise, didn't even try any research!), both said "Gee, for that kind of money, I'D take her in! Funny that neither ever followed through... OB couldn't even handle a 10 minute visit. The other would forget her appts. I could not take care of my mother physically, so the BEST solution was a care facility. She got the BEST care, she was clean, well fed, and LOVED.
While this can be true:
"Please keep in mind that Senior Homes are not always what they try to show and make you believe."
it isn't always. So many say this, but they haven't seen every one that exists. Others will also ask if WE'D want to be there. I can say YES, I would want my kids to get me into that place if I needed it. The place is nice, the food is good, the staff is wonderful. Even the price was less than some other places (non-profit) AND they have a trust fund, so if someone lives there a long time and manages to outlive their funding, they might be able to have their costs covered.
Not all home environments are the safest or best choice. Not all facilities are the safest or best choice. We have to weigh ALL factors. In this case, we don't know all the factors.
1 - Consult a lawyer who deals with family law, elder law would be better, about your mother's situation and liquidating her assets to care for her. Also have documents drawn up for Power Of Attorney for medical and financial - and any other documents needed in your area to manage her affairs.
2 - Please have your mother evaluated by a family health care provider for health issues. Your mother may do better getting evaluated for dementia by a neurologist - ask for a referral. The goal is to determine the cause of her dementia since each has a different pathway. The health care provider can also assess for mental competency. If your mother is deemed mentally incompetent, then the powers of attorney come into play.
3 - Since your mother lives with you now, make a list of all the tasks of care that she needs. Also write down the times that you need to care for her. You may be surprised at how much you do for her and how much of your day that takes. Consider how much time your children need you and time you should spend with your spouse (time with him should be a priority). I am pretty sure you'll realize you need more hours to every day.
4 - Enlist help of family, friends, members of your faith group, and paid help (from mom's money) to whittle down your care giving task list until you can gain time for hubby and kids (and yourself). The goal is to have enough help that everybody's physical needs are met, everybody has relationship-building (connection) time, and everybody has time to pursue fun. I would add that you and hubby need "time off" from caring for others to enjoy being a couple. If everybody gets a solid 7-9 hours of uninterrupted sleep, 3 healthy meals, and some alone time each day... you'll find that attitudes will become sunnier.
5 - Regardless of your brother's cavalier attitude about your mother's home. many people with dementia progress to the point of needing 24/7 care. Unless there is enough money or insurance to cover 24/7 in-home aides, she may need to move into a facility. Do your research of facilities near you in case this becomes your mom's need.
2. Take a walk for a few minutes. Look - really be with nature, a flower, the pattern in a tree trunk. See the colors. = Shift energy, feelings, brain.
3. Do 'being present' exercise(s) with your husband [and each child]: looking into each other's eyes, being present, smile, listen, be quiet. Be individually, together - even a few minutes will shift anxiety/other feelings. This IS mindful support / compassion for both of you, together.
Somehow, interrupt the patterns - moments-minutes at a time.
Do this as often as possible while managing the larger picture.
Learn to shift into presence.
Put your mom in hospital or a nursing home for respite only you can get your home back to normal and take care of son. When your husband and children have their priorities back in place ditch the attitudies and you are rested . Then bring your mother back home.
Tips:
1. Respite care.
2. Have home care. They can care of your mom while you run errand
3. Chain of command: God is first , spouse,children, aging parents. According to the Bible.
Home care can be everyday or however much you need. Insurance will help pay.
Good luck, may your mother be around a long time.
Take time. For you and your family.
SHARON Leslie
One downside to Medicaid (bro may need this drummed into his head) is that MOST of the time Medicaid pays for NH, only rarely does it cover AL or MC. On top of that, as you seem to be aware already, she has to NEED NH care as well as funding. Cognitive issues are not enough.
Another downside to retaining the home is the cost to keep it. RE Taxes, maintenance, repairs, utilities, and if no one lives there, expensive insurance coverage.
We don't know the details of the trust but you wrote:
"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 it's a run-of-the-mill revocable trust, no, it's NOT protected. The reason behind that is your mom still "owns" the asset AND can revoke it at any time. Our EC atty set up an irrevocable trust for the liquid assets and then a Living Trust for the condo within the irrevocable trust. Personally I wouldn't recommend a Living Trust for a residence UNLESS the person has a terminal illness with limited time left AND can remain in the home up or close to the end. My mother was in MC for 4 years. We sold the place before that as it was expensive to keep and was a royal pain in my butt to clear, clean and have repairs done! 2.75 YEARS gone! Rental was possible, but I had enough to do to manage everything for her and did NOT want to become a landlord. Hiring a place to manage it would likely have negated any income and then we'd have to worry about damages, repairs, cleaning, etc when the renters move out. NO THANKS! TWO brothers, but 99.9% useless.
By selling it, WE were given most of the proceeds, but we put it all back into the trust for her care, except for some to cover cap gains we had to pay. Mom got a small share (the IRS has tables to calculate who gets what %.) Her share was enough to cause Medicare to be jacked up two years later (similar to Medicaid lookback - it only applied for the one year, as her income would go back down.) It also stiffed her on the first stimulus - due to delays in one company getting results to the financial group, the IRS used her previous year tax return, year of the condo sale, which cut over $800 from the stimulus. We will file for that this year, but still, she could have used it! (ironic that they sent HER $600 stimulus right away - she qualified, but passed on 12/16/20, therefore it goes to her estate and she got no benefit from it. I, on the other hand, who could USE it, didn't get it! Now I have to file for that too.)
Anyway, if it is a regular revocable trust, the house is NOT protected.
So what was the plan for paying the board and care place? Does she have enough income and assets to cover it? Sounds like there was no plan to sell the house. Meanwhile, how will all the house costs be covered? Even if she DID qualify for NH AND for Medicaid, they only allow a small stipend for the person - there would be no funds for the upkeep on the house.
Alternative, if there is funding:
IF she qualifies financially for Medicaid, they will cover some in-home care costs.
IF she has funds to cover the B&C, use it instead to fund home care?
IF sibling insists on living there, is he capable of providing ANY assistance?
IF sibling lives there, is he a threat to mom?
https://www.brattonlawgroup.com/faqs/does-a-living-trust-protect-assets-from-nursing-home/
"A revocable living trust will not protect your assets from a nursing home. This is because the assets in a revocable trust are still under the control of the owner. To shield your assets from the spend-down before you qualify for Medicaid, you will need to create an irrevocable trust."
Legal wrangling to get brother out will also drain assets. It might be best to use the attorney to explain to him, in writing:
1. Mom cannot change anything at this point.
2. Mom doesn't qualify for NH, therefore will not get Medicaid.
3. IF she qualified for NH and Medicaid, they may allow him to stay, but he has to pay for ALL expenses.
If he doesn't have enough income to cover ALL the expenses of the house (RE taxes, repairs, utilities, insurance, plus any maintenance outside of repairs, such as snow removal, yard care, etc.), then he can't afford to live there. Period.
Trust or not, it sounds like the best solutions are to sell it and use the funds for her care OR use her income and any assets to pay for in-home care, but he would need to be paying his share for staying there and perhaps contributing to her care. If he's not willing or she doesn't have enough assets to cover the house AND care, the place will need to be sold. I would recommend installing cameras if there is any plan to keep her in the home. Legal advice is certainly needed here.
In-home care, esp if 24/7, is more expensive than a facility, plus the costs of the home need to be considered/covered as well. Most often it is less expensive to use a facility and sell the home to cover that cost. In-home care also requires your time and efforts to maintain and oversee.
Some highlights:
There is a 250,000 exclusion from Cap gains when a house is sold.
There'll be an increase in her Medicare cost, for a year, about 2 years after the sale
Consider consult with an IRS Enrolled Agent
GOOD investment of the proceeds can prolong the life of the funds!!!
Also, speaking off the cuff based on recollection, I THINK this is what my attny said RE the Trust. It's revokable until it's irrevokable. Lack of Capacity (where we are now) makes it irrevokable. So now they can't take the house (were she to need to go on medicaid which she is not now). But I could have that wrong. I'll study as needed.
I can only recommend that you put your mother into care of some kind before she sends you all beyond burn out. Its a horrible situation and you have children which we don't ( except for my stepson who is hardly ever home now my father has moved in).
Your lives are changing to suit this person who, like us, have chosen to care for and its not working out.
I assume only that you're younger than my husband and I (55 & 61)
You all have your lives ahead of you.
At the time you probably either had no choice or thought you were doing the right thing by caring for your elderly parent.
Its only been 2 months for us but it feels like 2 years. My father will not go into care. He refuses to. My brother feels bad and is very sympathetic to our plight as he's said that we were left with no choice but to take my father in.
He's early stage dementia but not bad enough for full time care. ( and still able to constantly whinge and complain about everything he doesn't like about living with us)
I can only hope that your family can find peace and sanity and that you are blessed with some respite.