Disabled spouse needs in home care but keeps firing aides

[Anonymous]

I'm the 12:27 poster

OP, the agencies will have an RN that can come around and talk firmly to him that he can't fire caregivers willy-nilly. Once you sign contracts with the agencies have their RN come around and talk firmly to him (without you in the room.)

Most agencies won't come out until an RN inspects the client first anyways.

[Anonymous]

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

The better agencies are charging $30-$35/hour so for 40 hours a week (almost all the time I am at work) it comes to about $5300 a month.

The median cost of a private room in a nursing home in my state is $9000 monthly.

[Anonymous]

Anonymous wrote: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.

That wouldn't work for us, I really wish it would. He is extremely helpless and disabled, like if he dropped the urinal to the floor he couldn't get it back on his own. He needs help opening up water bottles, etc. He isn't paralyzed but it is similar.

But I think I have gotten some good ideas from this thread. We DEFINITELY need an agreement that he will contact the agency to ask to phase an aide out instead of just firing them, but also he needs training on how to "manage" an aide i.e. provide corrective feedback. And I can't just leave him home all day but I can work on backup options that don't require me to be home all day either, than won't be super comfortable for him but also won't be unsafe.

[Anonymous]

Does he have control over other areas of life?

This sounds like someone who feels powerless and as though they have no control in life so they control what they can - in this case the care they receive. Their basic sense of self-respect is that they deserve to not be mistreated and they deserve to still be treated with respect and dignity and when that doesn't happen - then they want to control that- because they can.

[Anonymous]

And I would say your solutions need to be ones that give him more control - not ones that take away control, dignity or self-respect.

Find other things he can control. Sounds like he can't control his body, or his basic functions, or his mobility or much. He may even feel out of controll of his own thoughs and feelings. THere isn't much he can control except the people in his environment.

No one feels good when life feels out of control and they have no control - everyone seeks to find control somewhere.

[Anonymous]

OP, Whatever you do, don't quit your job.

Keep your job for your sanity.

[Anonymous]

OP,

If he can't manage bottled water caps get Tervis cups.

They are like sippy cups for seniors. Fill them with water when you leave in the morning. They have lids so if he drops them no big deal.

Can he manage a male urinal with press on cap? It looks like a lot of them have press on caps.

Given your description it does sound like he needs someone in the house for safety reasons and activities of daily living.

Given his physical status it sounds like without a caregiver he is really qualified for a nursing home.
Can you and your/or your children have a conversation with him that he needs to make it work with the caregivers otherwise you will need to consider a nursing home?

Also, what kind of credentials do your caregivers have? We found with Mom that the certified CNA's or certified GNA's were a better fit. The untrained home health workers (generally called housekeeping aids) performed at a much lower level. We also found that the CNA's that had done a lot of hardcore nursing home work and/or assisted living work did a much better job with Mom.

[Anonymous]

It sounds like he is very much still in the anger phase of dealing with his diagnosis. Which is common and normal but also extremely hard to deal with. Definitely talk to his doctor but I would also find an online support group for yourself. To the person who said to just keep bringing him to the ED, that will likely backfire at some point. This happens where I work and people end up either basically living in the hospital (which is expensive and often results in hospital aquired complications), be forced into a nursing home, and at worse, have an APS claim made against you. I've seen all these outcomes several times.

[Anonymous]

I have had to deal with my husband's rare, chronic illness. I finally put my foot down regarding the way he treated me. He was angry all the time and excused everything due to the condition. I went along with this because I was thinking it's unfair that we always ask disabled people to act like heroes and be inspirational in their behavior and I knew he was really struggling with knowing that this is never going away and his life as he knew it was over.

However, at some point I had to fight it and say stop. He heard me and ended this behavior.

He is on an SSRI and it does help.

Time and adjustment to their reality helps. They hate the situation they're in and feel helpless and hopeless. He feels less so now, thank goodness.

I also sort of took control of my household in a way, like this is what we are doing now, like it or not. Like you may need to make the decisions about the caregivers and handle the issue, even if he pays for it. It may actually make it easier for him as I'm sure this stresses him out.

Also, some illnesses have behavior changes as part of the illness. That may be what you are dealing with and you should probably bring this up with his doctor and ask about that.

[Anonymous]

It sounds like he may be at least partially paralyzed? As a nurse, I've found these patients to be some of the angriest, rudest, and most difficult to work people. And I get it. It's hard to lose everything that comes with being paralyzed. I'd be angry at everyone and everything if I suddenly lost the ability to do anything. I know you say he's on antidepressants, but it sounds lije he needs more support with coming to terms with his life and his future. Obviously there are many, many paralyzed people who are happy and enjoy life, but they don't get to that point without the right supports.

I also strongly encourage therapy and a support group for yourself. He's not the only one dealing with thoughts and stress of their future.