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msnikkihall Asked January 2019

What is the best way to handle my demanding, disabled father?

I moved in with my dad 11 years ago when he got really sick, and my mother was unable to take care him. She died shortly afterwards, and I remained because even though he could still cook and get around the house, I didn't think he should be alone since he is legally blind and had been falling albeit infrequently.


Anyway at the end of 2017, he had a stroke. It made him unable to walk long distances, and he became dependent on a wheelchair and a walker. I considered a nursing home at this point because I am his only child, and I was already feeling the strain of caring for him. I work 10 to 12 hours a day, and I have an 11 year old to take care of. I am morbidly obese and diabetic. I lost 10 lbs. when he was in rehab because I was finally able to focus on myself, but gained it all back and then some when he came home. I was tempted to transition him over to the nursing home, but he acted out so badly when he was in rehab (called 911 on the nurses because he hated them, refused to wear his oxygen, etc.), I abandoned the nursing home idea. Instead I hired a caregiver to help him while I'm at work, and I tend to him when I get home.


Well, two weeks ago he went back to the hospital and hasn't been the same since. Since he's been home, his balance is even worse. Many times he's so weak, he can't sit up in his bed without assistance let alone go to the bathroom. He's having "accidents" at least twice day sometimes more because he can't make it to the bathroom. He has started waking me up in the middle of the night sometimes because of his accidents and sometimes because he's confused. For instance he may want breakfast at 1:30am and becomes angry when I tell him it isn't morning yet. I've also had to call 911 a few times because of his falls. He weighs more than 300 lbs. so there is no way I can lift him. I can't even move him enough to clean him when he has accidents. But he is lucid enough to know he does NOT want a nursing home. I had a lawyer come by to draw up a POA and a medical POA. My dad refused to sign the medical POA because he thinks I can use it to place him in a nursing home. He doesn't know after the lawyer left I found the old medical POA he had drawn up years ago before he got sick where he named me as his agent. However, that is not enough to place him in a facility where he can get help.


My dream is to place him in the assisted living facility a block from his house. I also own a home in the same neighborhood. I could hire a sitter to be with him and easily visit him when I get off work. We don't bring in enough funds to have a 24 hour caregiver but in the ALF I wouldn't need one because they have staff 24 hours to help him when a sitter isn't there. But he won't consider any of this. He expects me and my daughter to continue taking care of him no matter how much of a strain it is on us. He is so demanding and uncooperative whenever I or my daughter are around, but he behaves with his caregivers. He refuses to go to the hospital or keep many of his doctors' appointments anymore.


I think my only option is to move out of his home and let him figure out he can't live alone. But I don't want to be charged with neglect, abuse, abandonment, whatever.... What are my options here? Please help!

Isthisrealyreal Jan 2019
If family and congregation are guilt tripping you, invite them to participate.

You say in the south family is everything, then why are you and your daughter the only ones dealing with him and what about the 2 of you? Are you nothing, does it not matter about some quality of life for your daughter? If this is family in the south, something is wrong.

Until you say we matter and quite frankly, he has had his life. It is beyond unfair for your daughter to give up her childhood, which is gone at this point, to watch an old man manipulate her mom and be the only one that gets considered, your situation will stay the same until one of you dies. The stress he keeps you under is more likely to kill you then having people disapprove of getting him professional care, which he really needs. Open up to these people and tell them you need to survive for your daughter, so they can step out of the judgment seat and into helping you or he will go to a facility. It really bothers me that others are pounding you but not helping, is it really family or appearances that are so everything in the south?

Magpie13 Jan 2019
My very stubborn, difficult to care for, I lived with him 10yrs & did it anyway Dad passed yesterday, 1/5/19 6:10am.
I'd given up my job in the last 3 years, was prisoner to his illnesses, the plaque in his body gave him dementia like symptoms those last 3 years.
I'm bone tired exhausted. I didn't move him until Hospice 9 days ago.
I regret this for him and myself. Though he'd made me swear an oath he'd never "go in a home" he would have had better care, and I wouldn't have lived in constant fear of mistakenly hurting him.
He was also the call the cops, scream his lungs out type out the hospital. Humiliating.
But the damage I did too myself? Irreversible.
I'm 5'5" 130lb, he was 6'2" 190 until the last 7weeks when he suddenly wasted to 140. He was no easier to move. Not a bit. Dead weight.
My county offered Elders services that included a social worker, I palmed it off as more of his conceriege. They advised me, but I wanted to keep that oath. Try checking your counties Elderly Services. They'll come to your home.
Speaking as someone who just took your caretaker shoes off 27 hours ago, care for yourself and your daughter. You are going to live longer, he has lived!! Give yourself a chance for health & happiness too.
Best wishes.
AnnReid Jan 2019
”The Oath”. When uttered by someone suffering from dementia, not just to either party.
“Humiliating”? Certainly not IN ANYWAY towards your reactions or relationship to him.
”Irreversible “? Not for me, but it took several years of rebuilding before I could lose the 80 pounds of stress weight I’d gained.
The “fear of mistakenly hurting him”? Chronic, and by the Grace of God, one of the things that ultimately provided the force that allowed me to decide that residential care was AT LEAST SAFE, as opposed to sleeping on the camp mattress on the floor next to her bed, knowing that NOTHING would stop her if she decided to get up.
And then there was the pressure sore on her heel that I “caused” by making her put the shoe on for physical therapy.
You CAN feel more like yourself again, and part of the caregiver’s discipline after the responsibilities of caregiving are completed is to be as good to yourself as you were to him. So starting ASAP, do that.

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CTTN55 Jan 2019
"I am morbidly obese and diabetic." 

"But he is lucid enough to know he does NOT want a nursing home."

"He expects me and my daughter to continue taking care of him no matter how much of a strain it is on us."

The three statements above say it all to me.

You are greatly at risk to become a statistic. I think you know this.

So why is this old man's selfish and unreasonable stance more important than you? More important than your 11-year-old daughter?

You seem to be willing to sacrifice yourself for his unreasonable demands, but what about your daughter?

SHE IS MORE IMPORTANT THAN YOUR FATHER. This is very unfair to her.

Your father needs help in a facility (probably a nursing home). Then you can concentrate on your own health and on being a mother to your daughter.

Please, please put your daughter first!

Isthisrealyreal Jan 2019
He may be beyond AL, being unable to transfer from bed to wheelchair alone and weighing 300# is a risk to caregivers. Some AL facilities look at how many people does it take to care for him and decide if 1 can't then he is not a good fit. Just so you know.

The advise about refusing to bring him home because you can no longer care for him is really good advice. Be prepared to be guilted and insulted, made to feel like a monster because you won't take him home. It is sickening that these social workers do that, but they don't have to work as hard if they can guilt you into taking him.

I would also get him some adult diapers, pull ups, to wear so when he can't make it, it's just a diaper change. My dad was 300# and i bought the Sam's club brand and they worked great, i called them briefs and took all his other underwear away.

You can do this, you have a daughter that needs you and if you don't do something you could end up a statistic. You and your daughter are important and quite frankly, she matters most of all.
msnikkihall Jan 2019
The social worker won't be the only one making me feel guilty. Family and congregation members can be the worst. I don't know about elsewhere but in the south family is everything. Even if it costs you your health and well being, you're supposed to take care of family. I don't think I'm abandoning him by wanting to put him in a home. Either I or someone else would be there everyday to check on him. I can ignore other people's opinions when I get fed up enough, but it definitely adds to the stress.
golden23 Jan 2019
If your dad is having " accidents" I don't think assisted living is the right place for him. You need to have him evaluated both for his ability to look after himself - ADLs - which include being able to toilet himself, and more and for his psychological state - a neuropsych evaluation. His doctor needs to be aware of his limitations, moods, weakness etc. I suspect it will be enough for the dr to say he cannot live alone. You need to make it clear to that you are unable to care for him at home. Even his weight makes proper care by you not possible, Let the dr be the "bad guy". As others have said, next time he goes to hospital hold firm to your position that you can no longer do the care. Demand these evaluations and refuse to take him home, Good luck. Let us know how you make out.

nesm3833 Jan 2019
I’m not sure about the legalities about leaving your father alone. But you need to start putting yourself & daughter first. DO SOMETHING! Get him in the assisted living facility ASAP. That helps you & him. They are trained to take care of his needs. Stop stressing yourself & daughter with your dad’s situation. Doing this doesn’t mean you don’t love him. Everyone is not a caregiver. That’s not a bad thing. After you’ve done this take the time to work on your own health as you don’t want your daughter trapped in the same situation later.
msnikkihall Jan 2019
I can totally see her trapped in the same situation as me. I have the beginnings of a lot of the health problems I see with my dad. I can fix it with proper diet and exercise, but I'm too stressed and tired after dealing with him. He had another accident last night and asked my daughter to help him change his underwear. She didn't of course, and I told him that was highly inappropriate and never ask her again. But he was in one of his combative moods at the moment and I don't think he processed a word I said. Sigh....
AnnReid Jan 2019
Have you considered the possibility that your father’s conduct has become far more severe than “demanding”? Sometimes when we make heroic efforts to “help” it’s possible to lose sight of the fact that a situation is becoming undoable.

I had excellent results with having a psychiatric evaluation done. Even by just introducing your father to “a social worker who needs to talk to you about the possibility of (whatever might appeal to him)”, documentation can be developed that can result in getting help for both you and him, and possibly with finding and managing a transition to appropriate placement.

You sound apprehensive about assuming the responsibility for placement. Considering his numerous needs, are there any particular specific reasons why you feel this way? When you say he is “lucid” about accepting residential care, do you believe he is capable of assessing his current options, empathizing with the inappropriate demands he is placing on you and a child 11 years old, and planning ahead to when and if his needs become even more debilitating? It doesn’t sound as though he is capable of even remotely lucid thinking.

If you are in any way neglectful, it’s toward yourself and your daughter, and as much as you care about your father, the people you’re neglecting are pretty important people too.

Think about that psychiatric eval. Even if he doesn’t need residential care NOW, how long will you be able to manage before he does?
msnikkihall Jan 2019
The psychiatric eval and getting a social worker involved sound like great ideas. But he doesn't have another doctor's appointment until next month, and I want to do something now. Oh well, guess I'll just have to be patient. But if he even suspects that someone is doing a pysch eval on him, he is going to take it as an insult and be so mad at me. They did that when he was in rehab. I think that's another reason he hated them. He said they tried to say he was crazy. Someone here mentioned blaming it on the doctor and making him the bad guy. Maybe that will work...hopefully.
Eyerishlass Jan 2019
Moving out of his home hoping to force a realization on his part that he can't live alone is a risky move. He may discover he can't live on his own after he takes a fall or sets the kitchen on fire. I understand the "I'll show him!" approach as a means to an end but it is unlikely he'll wake up one day and think, "Gee, I really can't live on my own." Instead I'm afraid he'll dig in and cause a bigger mess for himself that you will have to clean up.

Your father isn't holding you prisoner. If you can't take care of him anymore then you have to take steps to make sure he's taken care of once you're gone. It may not happen overnight. His doctor's office can refer you to a social worker who will come to your home. Or you can wait until he takes a fall. When you can't get him up call 911 and once at the hospital tell the nurse that you need a social worker. Tell the social worker that you can't care for him anymore.

Start pricing and looking at assisted living facilities so that when the time comes you'll be ready. Have one picked out. Talk to the director. Also, plan on where you will go once you're no longer caring for your dad. In other words, get your ducks in a row.
msnikkihall Jan 2019
You are absolutely right about him making a bigger mess that I will have to clean up. He can be so stubborn! How does it work if the doctor sends a social worker to the home? The social worker can't force him to go to a nursing home/ALF, can they? I'm asking because his falls have never resulted in him going to the hospital. He's more likely to have a congestive heart failure episode. We've been through two of those in the last 4 weeks, but I hoping his new medicine will prevent that.

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