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I retired early to move to Oklahoma so my wife can care for her mom. My wife said her mom's health was declining fast and maybe had a year left. That was over three years ago. Her mom became bed ridden four months ago. She has no control over her bladder or bowel movements and my wife changes her three to seven times a day. It has become physically and mentally overwhelming for my wife of 53. She tore a ligament in her knee a few months ago and still limps around. My wife has also had a breakdown and her doctor put her on HBP meds and anxiety meds. My wife reached out to the Hospice nurse who contacted her mom's doctor. He referred her to a nursing home. My wife explained to every family member that she cannot do it anymore. They all agreed a nursing home is the answer because none of them are in any position to take over mom's care. Then the day came we ( Hospice nurse, wife and I ), told mom. She became very standoffish and said she will not go and she would rather die first. She said she used to work in a nursing home ( back in the 80s) and she knows how " those people" can be. We explained that there are Quality Control and certain protocols now. She wasn't trying to hear that. She still refuses. My questions: At what point does my wife's health override her moms well being? What can/will the state do to help us? The nurse said that mom cannot be forced into care. I almost called 911 a few weeks ago because I thought my wife was having a stroke. Her BP was off the charts. I swore if that happened again, we would just quit. Then what? It is so sad for their relationship to end that way but my wife's life is more important. It is also sad that after my wife had her breakdown, her mom is so selfish, that she will not go willingly into a home. What are our options? I am almost to the point of calling 911 for mom and having her hospitalized, then rejecting her upon discharge. We don't want to do it that way. Please, any advice.
Lee

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The time has past that your wife's health should come first. She needs to tell mom - I'm done. Either MIL moves out or wife moves out. Oh, wait, it's your house. So MIL must go. Your wife needs to tell her that she NEEDS to go to a NH. That no one WANTS to go to one but no one at your home can care for her extreme needs. Changing her so many times a day? Ugh, no way, that is just not OK.

Good luck reclaiming your lives!
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BurntCaregiver Jun 2021
againx100,

That's the way it has to be.
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So sorry to hear your wife's health as become so damaged and I appreciate you working to accommodate her and to protect her.

While it's true a person can refuse to go to a facility, if there is no safe place for them otherwise, preference has to yield to safety. A friend's uncle, who routinely fired in-home carers but couldn't manage on own, was kept at the VA hospital when he went for a health event. He'd run out of options, for his safety, he had to stay.

I can imagine MIL is terrified at the lost control of her body and is grabbing at safety - her daughter - with the desperation of a drowning person. A drowning person rarely has the presence of mind to consider they may be harming the one trying to rescue them.

Are there converted house-type assisted living facilities nearby? Perhaps a smaller setting would ease MIL's fears. When we were touring ALs 10 years ago, many were increasing the level of care provided; one had a completely bedridden 91-year old...

The biggest setback with these facilities is that most are private pay; although I did encounter a couple that took VA vouchers.

The Find Care section of this site is a good place to start searching. Best wishes to your family and for a speedy resolution that's best for the health of you all.
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notgoodenough Jun 2021
"I can imagine MIL is terrified at the lost control of her body and is grabbing at safety - her daughter - with the desperation of a drowning person. A drowning person rarely has the presence of mind to consider they may be harming the one trying to rescue them."

That is probably one of the most spot-on descriptions I have ever read! Very, very well put!
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If she is on Hospice talk to the Hospice Social Worker. She can arrange a transfer to a Skilled Nursing Facility as a permanent move. Often a facility will find room if they are aware it is a Hospice patient.
But in the mean time tell the Hospice Nurse and Social Worker that you need Respite. Medicare provides for Respite Care yearly. (It is about 5 or 6 days.)
That will give your wife a break for a bit.
It will also let your MIL realize that (most) facilities are not like they were back in the 60's. 70's and 80's.
Hospice and also do a longer term stay in their In Patient Unit if it is for Pain and or symptom management. So with a little "creative" paperwork it might get MIL in the In Patient Unit for about 2 weeks giving your wife a nice break.
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Wolfman24 Jun 2021
Thanks for your support. The Social Worker from Hospice is aware of the situation. However, she deflected our conversation with the costs of a NH, and how assets would be seized and how even we could be responsible for payments later on. When we told her that we or any other family member cant afford $5000-$7000 a month ( her quote), that's when she really became unhelpful, as if we were dumping mom off on her. I asked her exactly how can you help my wife, what exactly do you do for us? She said it was not her job for NH placement.
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The time has come for sure. Would it be possible to take your MIL on a tour of a NH or two? If not, how about virtually? Her imagination's probably running wild, maybe if she had real images to replace the imagined ones it would calm her down.

My grandmother had the same phobia about nursing homes because she'd heard of abuses. A favorite relative, whom she trusted above everyone, selected one for her and so she reluctantly went---and ended up loving it there.
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The way I see it, MIL has a choice between admission to the NH for respite for two weeks, or permanent admission when her daughter has a fatal or debilitating stroke or heart attack. Can you put it to her that way, unsmilingly? It is seriously on the cards.

This is a first stage. From there, you and your wife will at least have a breathing space to make longer term decisions.
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Wolfman24, Medicare and every other insurance I am aware of will provide for Respite for a Hospice patient. This is a benefit that you should be able to take advantage of this. You are not dumping mom off you are using a benefit just like any other that Medicare provides.
It is also pretty easy to contact another Hospice and see if they would be of more help.
I hate to even mention this option but…..
you could drop Hospice and get MIL to the hospital for some reason and then tell the social worker there that it is unsafe for her to be released to home and you need help placing her. This is also known as an “ER Dump” and I personally don’t think much of it but if that is the only way to get her placed safely.
And the social worker for Hospice or the hospital can help in application for Medicaid if it is needed.
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I’m so sorry for your wife’s stress. Is there anyway you can hire someone to care for your mother in law in the home? A healthcare worker that can take over the duties your wife has been performing? I’m not sure, but it may be cheaper than a nursing home,
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rovana Jun 2021
I suspect MIL would not agree to pay for caregiving help.
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“Showing signs” of burnout? No. She IS burnt out. I feel for her. She will die before her mother if she keeps this up. 53 is not old and she seems already broken down.

MIL can refuse and argue all she wants, but MIL needs to understand how this is killing her daughter.

Better to take MIL in an ambulance to a facility than taking your wife out of your home in a hearse.
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BurntCaregiver Jun 2021
You're right about that, LoopyLoo.

Many caregivers who are decades younger than the person they're caring for and start off in fine health often end up dying before the person they are caregivers to.
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Wolfman24,

You ask at what point does your wife's health override her mother's well being.
The answer is at every and any point.
Your wife and what's best for her is supposed to come first in your life. You are not married to her mother.
Your MIL can carry on all day long about refusing to go into a nursing home. The state will not help you. If she can no longer care for herself and your wife cannot continue caring for her, then the choice isn't hers to make. Don't count on the state doing anything for you either. The only time they intervene in domestic caregiving situation is if there is abuse and neglect to the elder. If there isn't they do nothing.
If your MIL refuses to go willingly into a care facility and no one else is willing to move her into their home and provide care, then there's really only one option left.
Bring her to a hospital ER and ask for a 'Social Admit'. Specifically use the term 'Social Admit'. They will know what this is.
Then a hospital social worker will speak to you and your wife.
Your wife has to speak very plainly with these people and tell them that she is unable and unwilling to continue being her mother's caregiver and that she will not accept her back into the home. They will admit her to the hospital and keep her there until they find a care facility that has a bed for her.
There will be several social workers involved and all of them will try to talk you into taking MIL back. They will make all kinds of promises about sending help to your home if you'll have her back, and tell you about scores of resources available to you. It's a big load of crap because the truth is they won't do a thing. Don't let them or the hospice nurse you're dealing with say that you and your wife can be held financially responsible for MIL's medical expenses or nursing home costs. You are not responsible for that. If your MIL's hospice bill is being paid for now by Medicare and secondary insurance, it will be paid for in a care facility too.
It's sad that an ER dump is about the only choice for you and your wife. It's the job of hospice to find a care facility for her. The hospice nurse/caseworker for your MIL doesn't want to do her job. That's why she's giving you a hard time and saying things like you could be held financially responsible for your MIL. That's not true.The nursing home the hospital puts your MIL in might not be the greatest of places. On a Social Admit, they usually aren't. That doesn't mean she has to stay there. Once she's placed she'll be in the system. You and your wife will be able to look at different facilities and move her depending on availability.
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disgustedtoo Jun 2021
Caseworker and/or social worker would be the ones, I should think, who might be able to help find a facility for her, not the nurse. There's nothing specific online that I've seen yet that say this IS their job (finding a place.) However, finding a facility isn't the "hard" part, it's getting this woman to move.

It IS highly irresponsible for this nurse to tell them assets will be seized and they may have to pay. NEITHER statement is true. IF MIL has assets/real estate, then these would be used to self-pay for a facility. OP should NEVER sign any paperwork for ANY facility (AL, IL, MC, NH or hospital.) With no mention of competence, assumption is she is fine mentally and therefore even if there are POA documents, they would NOT be active, so again: DON'T SIGN ANY PAPERWORK for her.
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Your wife is already burnt out. Her mother's care is beyond the ability of 1 person 24/7/365. Your MIL needs another living situation - now. Here are a few ideas:

1 - Research all options that your MIL qualifies for: adult day program (usually at a nursing home or personal care home), home health aides, nursing home (assisted living is out of the question with MIL's degree of needs), and hospice.

2 - Tell MIL that she needs a new home since her daughter can not care for her anymore. Give MIL choice of top 3 options she qualifies for. Remember to tell MIL when she needs to move out.
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rovana Jun 2021
I think they are in MIL's home - so the aim should be for OP and wife to move out and away themselves. Like husband gets a job in another state. Now they have to figure out how to do this without risking abandonment charges and how to deal with wife's guilt. But I don't think MIL will see reason and humanity while her daughter keeps doing. Very selfish.
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I agree, you need to do what needs to be done for your wife before she dies of caregiving for her mom. It is not uncommon for caregivers to die before the ones they care for. Mom and dad were in AL but dad insisted on having mom care for him - by this time he was on hospice. Dad was getting weaker and so the decision was to move him next door to SNC. It was probably as much for mom as for him - mom was getting really worn down.

In no uncertain terms tell MIL that your wife is no longer able to care for her because her health is in serious decline and whether or not she likes it she needs to move.

If the only option is to get her to ER and refuse to take her home, then do it. It's not the best option, but you may have no choice.

If other options are available, then pursue them, but while you're getting MIL out of home - you and wife need to hire in home aids to care for your MIL and MIL pays for those services.

Unless you and wife have signed as the responsible payer for your MIL - there is no way Medicaid can ding you for your MIL's debts. - I agree dump the current hospice and find another (the one we had for dad was super). When dad went into SN my worst fears were realized - I was afraid dad would eat up so much of their income and mom would be left destitute and homeless. However, after running my tuckus off getting all the paperwork together and getting dad on medicaid (he died a couple of days before it was approved) mom was left with enough income to continue her life as before. Mom ended up with a medicaid approved annuity that paid out over 2 years; if she had died before the annuity paid out - the state would get the they're share first then any balance would have gone to beneficiaries. Your mother's debts should be your mother's debts and no one should come after you, your wife or other family members for recompense.

I wish you and your wife the best and pray that you all be blessed with peace, grace, love and a swift resolution to your troubles.
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cweissp Jun 2021
PS - another thought move out of MIL house and call adult protective services that MIL is living in unsafe conditions and you and wife are no longer able to care for her.
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If she doesn't want to go into a nursing home, you might want to check into around the clock care in her home if those services are around. Otherwise, you might want to check into assisted living apartments for seniors.
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Look into getting the respite care. Medicare covers this for a week or so, if she's on hospice. If it's in a facility, talk with the facility about what it would cost to keep her there after the respite care expires. She'd already be in the place. DON'T sign any paperwork for her. She is competent, therefore any POAs you have wouldn't apply. While she's in respite care, consult with EC atty to see what options you have. What is usually true is we can't force someone to move somewhere, even those with dementia, if they are refusing (been there, done that!) An EC atty might be able to come up with options and/or ideas for facilitating this. MIL's assets should pay for atty services and for any in-home help or facility care.

Until a good solution is found, hire someone, even for 8 hours/day, to do all the hard work. MIL is bedridden, what is she going to do to prevent it? She may raise a ruckus, but so what? Let her complain all she wants - tune it out or leave while there is a care-giver with her.

Hospice should provide someone to help with bathing and even some changing. This would be less expensive if it's not full time care (MIL funds pays for this, not you or your wife!)

Your wife's health is in jeopardy, so at the very least, get some help in the house to reduce or eliminate as much care as possible from wife. Working on a permanent solution can be done when someone else is doing all the hard work.
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I feel for your wife and you with this situation. Many times a person refusing to go to a care facility who has dementia steps into a world of I can't/won't mode because they feel their family or friends OWE them to be cared for because they did care for them. The problem is most people with dementia have false memories and this makes them argumentative.
You can not force anyone to seek medical care nor where they live, however, you have the right to have a life. You are not obligated to be the sole care providers. Hire someone to assist. Don't wait, just utilize the money for her care so you can take care of your own lives.
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rovana Jun 2021
Whose money? How can they control MIL's money to pay for caregiving? Is hired help affordable?
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I was in the same boat as your wife. My blood pressure was off the charts. My doctor said that I was a stroke or heart attack waiting to happen. My nerves were wrecked!

I feel for your wife and for you. You sound extremely supportive like my husband was. It was hard for my husband to watch me burning out during my caregiving years. I had mom living with us for 15 years. I nearly lost my mind. It placed a terrible strain on our lives.

When my mom became bed bound and incontinent she entered a hospice house. She died peacefully at the end of April. There were only three beds. It was absolutely incredible. The care was excellent. This particular house served several hospice organizations. I would encourage you to research all of the hospice organizations. They are not all the same. Some are much better than others. See if any of them have an ‘end of life’ hospice house or facility that your mother in law can go to. They are not nursing homes. They focus on comfort care.

If she refuses all care, do whatever you have to do to protect your wife’s health. I am so very sorry that you and your wife are struggling with this.

I am not heartless. I certainly felt for my mom who had Parkinson’s disease. I know that you and your wife care for your mother in law, although feeling resentment is natural in these situations. It just becomes too much for us to do. You are in desperate need of relief!

Wishing you peace during this challenging situation.
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One option might be to talk to your wife’s doctor about her own health risks (with your wife’s consent organised of course). Stress your wife’s physical injury and further injury risks, her BP problems (be specific about ‘off the charts’), her mental breakdown and anxiety drugs. Your doctor then gives you (and your wife) instructions that she is to cease care of her mother. Tell your MIL that the doctor will not permit her to continue, that you are not willing to see this care kill her, and that MIL has no option about finding somewhere else to live where she can be cared for. Perhaps let your wife go into hospital (or just go away) for a few days, refuse to take over the care yourself (or let your lack of experience and concern be very obvious), and let your MIL see that staying in your house is NOT an option.

This might be an alternative to an ‘ER dump’, and might also make for a better follow up story for the future. ‘Doctor’s Orders’ can help a lot.
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rovana Jun 2021
I think MIL may be in her own house. OP and wife need to leave for sure, but how to actually handle this so as not to be accused of abandonment/neglect. And of course wife may feel guilty if they just walk out - maybe that is why this is becoming such a stressful mess. MIL will not go into care, no one in the family wants the job of caring for her, so daughter feels she just has to hang in there somehow and is not willing to do the necessary "tough love".
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What happened to the all the family support who said mil needed to go?. They don't seem to be around anymore. Join your wife at your mil bed and tell her you are losing your wife. You are her husband and protecting your wife is the most important thing in the world to you. Mil needs to let your wife be a wife to you and not a caregiver for herself. Invite the entire family to her bedside! Then tell them to find a place for mil in the next week or you will do it for them. Before she has a stroke. No one seems to care about their sister except for you.
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GOOD CAREGIVING REQUIRES BALANCE.

Your MIL is living a WELL CARED FOR, COMFORTABLE LIFE.
Your wife is living IN HELL.

This is NOT a BALANCED CARING RELATIONSHIP.

If you LOVE your WIFE you will assist her to do WHATEVER MUST BE DONE to save her own life and PRESERVER HER OWN HEALTH.

Her mother is an important part of her life, but not important enough to be allowed to become the cause of your wife’s death.

Since Mom appears to be cognitively intact, TELL HER that she must design HER OWN CARE PLAN, and that your wife CANNOT be involved in her physical care, but WILL continue to be a loving, concerned daughter.

BALANCE. Your wife needs a life, and the time to get well. Nothing less!
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Yes it’s an emergency because your wife’s health is at stake. MIL needs to go to a facility. Don’t tell MIL where you’re taking her (that was the past mistake) until you get there…make something up…maybe say you’re taking her to lunch…or to dr appointment. MIL had zero say in the matter. ..sounds like she has dementia. If God forbid something happens to your wife, YOU will be your MIL’s 24/7 caregiver. I hope you like changing diapers…because you will be doing a lot of that kind of ugly stuff.
Hugs 🤗
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Nothingleft Jun 2021
Take care of your wife. Just be honest with your MIL. Make other arrangements and let her pay for in home care. It’s wrong to just take her and not tell her till you get there. 🙏🤲 don’t do that. I’m in about your situation. My sister and I takes turn we have a neighbor that helps out and 1 hired help that’s making it manageable for the time being. Hospice comes I. 2 x a week and aid comes in 3 x a week. Just be honest with MIL.
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So, you retired early to move to OK to care for wife's mom. So, you are in her house correct?

Legally, she has the right to be in her home and you have the right to leave. Do you have a place to live besides her place? If so, go. It is not right to do an ER dump to live in her home without consent.
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rovana Jun 2021
What would happen if OP and wife just left and went back to their previous state? How could they work it so that they could not be accused of abandonment? I don't really think that OP and wife are actually looking to take over MIL's home. Just to get MIL to a safe place so that they can leave without any legal jeopardy for neglect, etc.
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Here is what I just learned. I am going to be 88, have not a soul in the world except my dear kitty. Thank god, even though I have major physical problems, I take care of myself l00%. One of my most important concerns is that I somehow find a way, no matter what happens, NEVER TO ENTER A NURSING HOME. Were that in the picture, I will end it before it happens so I understand the repugnance of having this done. I just found out via a social worker in the hospital that there is a new program available via hospice and there are options out there when someone can't be cared for by a caretaker or a family and they do no want to go into a nursing home. I just found this out yesterday so I do not yet have all the details. But check with the social workers and Hospice to become aware of the latest new option that an be done to avoid a nursing home. I wish I knew now but I just started on this project yesterday. See an eldercare attorney - free one hour consultation too. Another thought is possible guardianship so you can make the decisions for her. Another option is to find some way to get her hospitalized for whatever. When it is time to release her, NO ONE SHOULD TAKE HER HOME. Then she will be put into a nursing home by the hospital. And your wife has to come first.
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disgustedtoo Jun 2021
Guardianship is granted for people who are cognitively impaired. No mention of that with the mother. THAT would be a waste of time and money.

"...find some way to get her hospitalized for whatever."
Not likely this will work. There isn't an admittance code for "whatever", so unless the mother is having a medical emergency, about all one could do is literally drop her off and leave. There could be legal ramifications for that.

Don't know what this SW told you, but hospice is NOT a full time care program UNLESS you have the service provided in a hospice facility. Medicare pays 100% for hospice CARE, IF it is properly documented by a doctor, but they DO NOT cover the cost of the hospice facility. So, perhaps the SW is referring to a new hospice facility going to open in your area. I can't see how this would be much different than being in a NH with hospice care.

ANYONE can hire hospice, but you are not likely to get a lot of care from them. Even those who are actively dying don't seem to get much care from some of these places (based on reading other postings.)

If what a person needs is beyond what a CNA can provide, you CAN hire nurses to do what's needed, but what is the point?
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Some good suggestions here about telling MIL that your wife comes first and that she will have to pay someone else to come into her home to care for her. I just want to say that this will all come off better if your wife, your MIL daughter makes this statement with you providing a rock solid backdrop. Your wife, the caregiver, the daughter, really is the one who has to put a stop to this emotional and physical abuse by her own mother.
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