Disabled spouse needs in home care but keeps firing aides

[Anonymous]

I'm so sorry, OP. I have a mother who is quite disabled now, but her neurodegenerative disorder was progressive and my father was able to retire before she needed extensive care. So he does everything, which is not ideal, because she does not want to hear about hiring someone, and he's getting old and confused and irritable, and there will come a time when he won't be able to care for her. It's like watching a slow train wreck.

I think you should:
1. Read your husband the riot act and tell him he has to suck it up, or else you will just go to work and not come back all day.
2. Tell him maybe he needs a mood stabilizer.
3. Tell him he may benefit from a rotating cast of aides, so if something happens to one, there's always someone else, and he won't tire of seeing the same person every day. My MIL has this arrangement: each person comes every two days or something, and they have some flexibility to cover each other's absences.

He's got it really hard, I know, but it doesn't mean he can just take you for granted.

[Anonymous]

This was the article I meant to post:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10037562

In addition, research on the IRP framework has identified five ways to redirect rights- or power-focused negotiators to interests. These are:

Do not reciprocate the rights or power statement. Instead, make an interests-based suggestion.
Do not become personal and blame the other party for the problem.
Reciprocate the rights or power argument but follow up directly with an interests-based suggestion.
Propose a process intervention. Suggest putting the argument aside and brainstorming an interests-based solution.
Suggest following the advice of a trusted third party.

[Anonymous]

Anonymous wrote:I'm so sorry, OP. I have a mother who is quite disabled now, but her neurodegenerative disorder was progressive and my father was able to retire before she needed extensive care. So he does everything, which is not ideal, because she does not want to hear about hiring someone, and he's getting old and confused and irritable, and there will come a time when he won't be able to care for her. It's like watching a slow train wreck.

OMG your poor dad!!

As someone in my young 50s I can promise you, the care your dad is providing is very hard! I hope you can force your mom to accept some paid care.

[Anonymous]

So your spouse’s disability does not affect their competency? I have a hard time understanding why, then, they would fire people abruptly and expect you to stay home from work—and have this happen repeatedly—when they know the effect this will have on you. It sounds passive aggressive. Is your spouse in therapy? Have you explicitly told your spouse that you do not want this happening because it is a hardship on you? It’s one thing to fire a person, it’s another thing to fire a person and expect, without asking, a spouse to be away from needed work.

[Anonymous]

Anonymous wrote:I work full time. My disabled spouse is mentally competent, but needs someone with him full time (or mostly full time) for safety and to perform all the activities of daily living. he is very particular though, and even if he finds someone who suits him, sometimes he will get annoyed with her over something relatively minor and will dismiss her in a fit of pique as being unsuitable. The expectation is that I will, of course, stay home with him until a new aide can be hired.

I'm really tired of this dynamic. When I bring it up to him, he complains that he is suffering severely due to his disability and I should be more compassionate. As the well spouse, I should understand and have empathy for his plight; he shouldn't be forced to bear the burden of poor care.

It really isn't possible for me to just leave him to his own defenses if we have no aide. He is helpless - can't get out of bed or use the toilet or get food and water on his own. So he needs someone. The next time he fires someone without getting a replacement, I really want to just let him stew in his own juices, but I don't see how I can do that. So what can I do? He is mentally competent and arranges his own care and pays for it, so I can't just tell them he has no authority to fire them. What can I do?

Time for a come to Jesus talk. He can make do with less than perfect aides or he can go to a nursing home. Don't be bullied by his demand for subservience masquerading as compassion. Tell him if he fires another aide without talking to you first, and you both agreeing to firing the aide and a plan, then he will have to move into a nursing home.

[Anonymous]

I would dump him in the ER whenever he doesn’t have an aide and let him pay the ER bill with the money he normally uses for his aides. I wouldn’t pick him up from the hospital until a new aide is available. Or I would just let him sit in his pee and poop all day till you get home. Whichever he prefers really.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I manage my parents’ caregivers. A lot of them really do suck. We have learned however to tell the agency “we would like to phase this one out” rather than firing them immediately.

I would not assume your spouse is being unreasonable in his assessment of the quality of caregivers. They might be pretty bad.

That's a good phrase, thanks for that! -OP

+1
This is great phrasing.
The issue though seems to be that OP’s DH is firing caregivers in a fit of frustration or anger, and is not able to exercise restraint or patience in those moments in order to think through the consequences of the impulsive firings.
(Or, if he does, he doesn’t think it’s a huge issue bc OP just picks up the slack.)

So he has a capacity and authority to make a choice. But so does OP.
Right now, the husband doesn’t actually believe that OP won’t drop everything and stay home. Because that’s what he has learned (and come to expect) that she will do.
Op needs to have another conversation and call him on this, impressing upon him that if he makes the decision to impulsively dismiss someone again, this will be an unwise decision, as she will not be able to be home with him to help with his ADLs.
And then OP needs to actually follow through.

Right now, he doesn’t feel the need to do anything differently because it isn’t really a problem….for him.
He is making bad decisions that don’t actually cost him anything.
If his decision resulted in something he doesn’t like, he would make a different decision.

[Anonymous]

Have him look for replacements, tell him you can’t skip work. He will come around

[Anonymous]

If he's doing this repeatedly while knowing you can't stay home, is he really competent to make that decision? That's a whole different can of worms.

Does he send them home mid-day?

[Anonymous]

You need to tell him point blank the current situation isn't working. If he fires another aide, you'll still need to work and then do it. Get up, get out the door and do what needs doing to keep in the income flowing. Let him languish in bed and if he complains remind him that would't have happened if he hadn't fired ANOTHER aide.

Look into day care type places, and even consider divorce so he can qualify for subsidized nursing home care at some point if that makes sense. Investigate all the options and discuss them together.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is he on an SSRI yet? That might help him chill out and if he has pain, sometimes SSRIs help with that as well. If he hates the idea of psych meds, the pain route may be the way to go. Had a parent who hated all care onto put on Zoloft. Then, he liked everyone.

Yeah, he is on antidepressants. That's a point though, I could ask him to talk to his doctor about maybe needing to change something.

How is his dose? If he's on the highest dose he can take, maybe they can add something to take the edge off. Also, is he remembering to take it daily?

[Anonymous]

OP what is the consequence of you staying home? Is it that you burn leave you need/want for something else? Have to work late another day? Risk getting fired?

I would try to stay out of the aide management criticism conversation and just drive home the consequences for you from staying home. It sounds like he feels like you staying home is a fine solution or a minor annoyance so maybe you can make it more clear why it’s not.

Idk if that will work obviously it’s just an idea.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I manage my parents’ caregivers. A lot of them really do suck. We have learned however to tell the agency “we would like to phase this one out” rather than firing them immediately.

I would not assume your spouse is being unreasonable in his assessment of the quality of caregivers. They might be pretty bad.

That's a good phrase, thanks for that! -OP

I posted this. I’m thinking maybe the way to approach is it to sympathize about the side he doesn’t like, but phrase it as “honey, I’m so sorry, can you please put up with her for a few more days or week? Let’s tell the agency to phase her out and send someone else asap. I really don’t think I can stay home from work this week.”

Also, are these aides men, I bet, since he is a man? Literally every single male caregiver we have had SUCKED.

I feel for both of you. Your husband probably is dealing with some bad aides at times, but I understand why you need to go to work.

[Anonymous]

how much do caregivers cost when compared to full-time nursing homes?

[Anonymous]

OP, We've had caregivers for around 12 years.

Are you hiring these direct pay? Or are you getting the caregivers from an agency?

Set up accounts with 3 agencies. Give him the phone numbers of the 3 agencies. If he fires someone then it is on him to call around to get someone for the next day. The agencies generally can't supply someone same day.

I'd also tell the agencies what is going on so they can prep the caregivers that your husband fires people abruptly. The agencies may have some strategies they recommend also.

If a caregiver has not shown up the next day (because he has fired someone the day before) then give him the numbers of the 3 agencies,
leave him a male urinal, several sandwiches and several bottles of bottled water on bedside table or one of those tables that swings over the bed.

You go to work.

He should be able to handle using the male urinal, sandwiches and bottled water during the day.