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My father suffers from severe diabetes (with every possible complication) He has renal failure and is on dialysis.
He has recently become immobile and bed bound. Needless to say his general health is extremely poor and his cognitive function is suffering and it gets worse with every problem he faces.


He has a permanent live in caretaker- who changes him, feeds him and tends to his basic needs. My father doesn't sleep at night and often has many requests- like a drink of water, or he'll want to turnover or sit up. I got him an electric bed but he refuses to use it, or he can't... I can't really tell. His caretaker is becoming increasingly frustrated and wants to leave and it's getting hard for me to find others because the lack of sleep really gets to them. I don't know what to do.
Some of them will ignore him at night when his requests get too much but then he will start screaming for me at the top of his lungs.
I don't know what to do... Any advice?
I live with him, I got the caretaker because I couldn't handle this situation anymore and i often have to travel for work.

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If his behavior and medical needs are getting to the point where he is chasing professional caregivers away, it might be time to rethink having him at home. Who tends to his medical needs—like giving him medicine and handles the dialysis? A skilled nursing facility can handle all this. If his cognitive functions are slipping away, he might even be a candidate for Memory Care.
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Shootmeplease Aug 19, 2019
His caretaker gives him his meds- I made a system and I check all the meds every couple of days. I have arranged for a driver who takes him to his dialysis sessions and back home from 8am - 3 pm / 3 times a week. His caretaker takes a break then and usually naps.
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Time for a SNF..he needs 24:7 care. You won’t be able to keep a live in caregiver. Or get someone 8am-8pm the another one 8pm-8am ..2 different ones ...hugs🤗
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Shootmeplease, from your exhausted and anxious-sounding posts and your screen name, I’m sure the others will agree that our advice that it’s time for alternative living arrangements for Dad are in order. No one does happy cartwheels down the street at the prospect of going to a facility, or being the one who makes the decision. If Dad has his cognitive abilities, have a loving but very serious conversation with him about the future—his and yours. Unless you are very well off, your money is bound to run out, as will your patience and health. You will need to be very strong, especially since you are up against cultural and social roadblocks. Have you tried to enlist the help of those in his social circle? When you consider that 40% of caregivers die before the people they care for do, it might be worthwhile.
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You are a bigger person than I am, I would tell him flat out, he knocks it off or he goes into a nursing home. I don't care what culture, unless you all are living in the country that condones this psychological abuse as a cultural thing, then it is not a cultural thing anymore it is a control thing.

He either respects others or he goes to a facility that will dope him into oblivion. His choice.
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Given the dizzying amounts of money this must be costing your father - or you? - anyway, and the fact that he needs not 24/7 care but 24/7 active attention, and that he's bed bound and very ill so it isn't like he's benefiting from his home environment, I'm wondering why you haven't already concluded that he needs to be in a nursing home. Presumably there's a reason?
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Shootmeplease Aug 19, 2019
It's costing me not him. He won't go to a nursing home. He is very ill but mentally he can still make decisions for himself, the cognitive function declines considerably only when he has a fever or hasn't been eating. He refuses to leave the house and it's a cultural thing- his community members don't even mention things like nursing homes because it's seen as such a taboo subject. I can't even get other family members to help out and talk to him because they look at me like I'm the devil.
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I don’t know what kind of job that you have but you will be broke paying for his caregiver on a continuing basis like this. He needs more than one caregiver if you continue to care for him at home.

You must realize this because it was too big of a job for you as one person.

Even hospice isn't around the clock care unless you can get him into an end of life hospice facility. My brother was in a hospice facility and the care was wonderful. The nurses were top notch along with the social worker and chaplain. Look into seeing if that is a possibility.
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I don't understand how you can be paying $2800 per week, out of your OWN pocket, for care givers to care for your dad, then say he refuses to go to a skilled nursing facility and it's a taboo subject, etc. What if you run out of money, then what? What if you pass away, what will happen then? What happens when you run out of care givers willing to come to your home anymore, because it's just too much for them? You have a seriously ill man on your hands making seriously unreasonable demands of everyone, who thinks nothing of screaming his lungs out for you in the middle of the night because he wants attention. You call yourself Shoot Me Please because frankly, it would be easier to shoot yourself than to continue living this nightmare you're in the middle of. Keep in mind that as his cognition continues to decline, so will his behavior. If hes THIS hard to handle now, only God knows how difficult things are going to be further down the road. Thats the grim truth. What's wrong with this picture?

You MUST develop a plan, it's absolutely imperative! A plan of action will also save your sanity when you feel ready to snap. If it were me, I'd have snapped long ago, tell ya the truth.

Get father into a skilled nursing facility or he may wind up outliving you, my friend. His demands are outrageous and you know that.....realize, before it's too late, that you DO have options here, even if your father doesn't like them. It's not only his life and his wishes that matter, but yours as well.
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worriedinCali Aug 19, 2019
Well said. Also OP, if you spend all your money on your dads care now, are you thinking about your own financial well-being? How will you survive financially later on? you are spending almost $34,000 a year on his care. WHY? And how long can you sustain this?
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You asked how NH handle residents who have night time demands. I was with Mom every day, and 24 hours a day during her last week. So from my observation, night time demands are handled almost better than day time ones. Assistance to the bathroom, turning, sitting, moving around, drinks, are handled they same way, usually by using a call bell or light, or if the resident isn’t capable of pressing the call bell, a routine check on them is made. Some of them still called out loud, that was ok too. If a resident just wanted attention and company they are brought out to the living room or desk and kept company one on one. Although there are fewer staff at night, there’s a lot less for them to do (99% of the residents are sleeping), it’s a more relaxing environment, so there’s more time to deal with the ones that are awake. Please don’t let this behavior concern you...they handle this and much worse every day.
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Shootmeplease Aug 21, 2019
Can I ask - how often were her requests? My father seems to have a request almost every 1/2 hour...
I agree with you I see a nursing home working much better than the current situation. The night shifts that I have managed to arrange all have a morning job- think they are going to sleep and get paid.
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I feel so sorry that you are having such a hard time. Sorry that your dad is suffering with his condition. It’s difficult for both of you. It’s great that you have a paid caregiver to help. His situation sounds like it is too much for one caregiver to handle though.

You could tour facilities to see which ones are suitable. Some are absolutely horrible and you can turn around and walk out and keep touring until you find one that you feel will work.

I don’t know anyone that has said they found the perfect one because all facilities will have some issues. Look for the one that has the least issues.

When my cousin was touring facilities for my uncle she left immediately if the stench of urine and waste hit her as soon as she walked in the door.

The other thing she was told by a friend who worked (nurse) at a facility was to look for one where employees are always busy doing something because if all they are doing is talking in the hallways then they are neglecting residents.

When my mom was in a nursing home recently in rehab she was double dosed with meds and the LPN was foolish enough to tell my mom that she didn’t want to return later that evening to give her the last dosage of her Parkinson’s meds. She told my mom to take the double dose because it wouldn’t hurt her.

I was upset when my mom told me so I called her pharmacist and the pharmacist made a good point by saying if she did it to mom then she was doing it to others and it was my responsibility to report it to stop her from continuing it. She also said that everyone is different and reacts differently to drugs and that a resident should never be given a double dose of meds.

Of course I reported her. Don’t kid yourself in thinking everything will be running smoothly all of the time. You will have to monitor his care but it will no longer be your full time responsibility.

Things do happen in nursing homes but report to the head nurse and social worker to keep it from happening again as I did. I told them that I appreciate all of the hard work that they do but they do not have the authority to take liberties with meds. As long as they assure you that they realize the situation is serious and address it, take it from there and move on. That’s what I did. The nurse admitted it. She was guilty. She was lazy and guilty and putting residents at risk by giving them the wrong dosage of meds. That’s serious!

I didn’t expect perfection but I won’t tolerate behavior that causes a serious concern.

Choose a home wisely. All residents should be treated fairly but the residents who are treated the best are the ones that have family members monitoring. You can also check if a camera can be installed in the room. Here in my state it is perfectly legal. Why should someone object if they are doing their job correctly? Cameras are everywhere these days. People should be used to them. I wouldn’t care if I had a camera on me because I always had strong work ethics and did an excellent job at work.
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You need two caretakers. One for days and one for nights. Both stay awake. A 24 hr caretaker must have adequate sleep time. Your situation will remain stressful until you obtain 2 caregivers. JMO
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