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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 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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Totally agree with Ahmijoy
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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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Sorry this is far too much work for one care taker. No wonder they are at their wits end. You need shifts of 3 care takes every 24 hours to provide breaks for the workers. I cannot imagine how many labour laws you are breaking by expecting an employee to catch up on their interrupted sleep by taking a nap.
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Shootmeplease Aug 2019
I never said I expected them to catch up on their interrupted sleep by taking naps nor am I breaking labour laws. I pay them almost 400 $ a day because I know the situation is difficult.
When I did hire 2 caretakers for two shifts- the night shift caretakers always had day job and thought they were coming to work from 8-11 pm and then sleep the rest of the night. They complained that they were too tired to go to their day jobs. Which is why I hired the 24 hr live in so he can adjust his schedule to my fathers ( who sleeps a lot during the day but also interrupted). The problem is any of the meds to help him sleep end up messing with his cognitive function so his dr. stopped them all.

I will try to find different people to work shifts who better understand the night situation.
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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 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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Has anyone had any luck with elderly night sleep getting better? I try to get him not to nap during the day so much, but it doesn't work, and honestly after dialysis he is just exhausted. I am so tired just thinking of all of this.
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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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I think the night/day sleep schedule gets all out of whack when a patient becomes bed bound and even more when they are so infirmed, they stop sleeping for 6,7,8 hrs at a shot and sleep 2, 3, 4 at a shot throughout the day and night instead it's a body rhythm thing because exercise isn't what's tiring the body out. Anyway I'm not surprised trying to keep him up during the day so he sleeps at night isn't working and really a body with the medical issues he has should be allowed to sleep when it wants, when it needs to. There probably are medications that might help but again this would likely be altering his body's natural instincts and it probably knows best. I know this isn't helping your problem much but maybe there is a happy medium of sorts. If you can find a rhythm that has him napping for say 2 hrs during the day 2 times, up for 4-5 hrs with dinner in the middle and no liquids just a sponge to wet his mouth if needed after a certain time so he can be taken to the bathroom and made comfortable before a longer say 4-5 hr sleep and then either awakened to use the bathroom and be turned before another 3-4 hr sleep or just left if he might sleep longer but getting him on a routine like that might help the caretakers manage their time and sleep.

I see that you really feel a care facility of some sort is out of the question but it sounds like that is more your fathers insistence than yours and while I can't relate entirely I get that a big part of the barrier is cultural and I'm wondering what do families in your culture do? It can't simply be up to one child to care for their parents at home both financially and physically until they pass, I mean while that may have been the custom in your dads day for instance it likely wasn't the case that the in firmed were being kept alive with dialysis, surgery and medications so they weren't as needy as long. You dad is choosing or allowing modern medicine to keep him alive longer maybe he could see the same reality of getting the daily care he needs as a result somewhere else. How did it get to be your home he is living and wanting to die in? Maybe other families of the same cultural background know of smaller facilities or arrangements that aren't widely talked about because of the cultural thing but actually provide the right care that works for everyone. Maybe making some inquiries or just finding some community members in your generation or with LO's your dads age or older (still with us or not) to talk to about some of these problems could prove more fruitful than you think. Wish I had better help to offer, sorry.
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I think that when the care needs become too heavy, the decision for where the LO needs to live has to rest with the caregiver. It is NOT fair for the patient to say NO, I won't leave my house. I totally understand cuz I NEVER want to go into a SNF. I hate them. But if I could not take care of myself and no on else could be reasonably expected to do so, then, my kids will have to decide to do the right thing and place me somewhere. Obviously, you and your caregiving team are stretched way too thin.

He won't like it. Who would? But, you've gone much too far already.
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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 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 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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I do need to find a plan B. I will be discussing options with him this week.
Anyone who has experience with skilled nursing facility have any idea how they will deal with his night demands? He demands range from, wanting to drink water multiple times, wanting to get turned on his bed , wanting to sit up on the side of the bed ( he has an electric bed) and sometimes wanting to sit on his wheel chair....I can't believe I am even typing these" demands".
Will they just drug him or ask him to deal with it, how will they deal with his screaming?
What's weird is that you can have a normal conversation with him most of the time But when I ask him about this issue he will just not reply.

Thank you for everyone who took time out of their day to give me advice- I truly appreciate it.
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Isthisrealyreal Aug 2019
He won't reply because he won't be held accountable for his actions. My dad does the same thing.

The NH is equipped to deal with needy clients, it is why they exist. They will take care of him as his needs require.

As CM said, this is their day job.

I am glad that you are willing to change things, NH are not the h3ll holes so many make them out to be and having an advocate means a tremendous amount.

Best luck finding a solution that saves your life and gets dad the care he needs.
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when I ask him about this issue he will just not reply. I think he knows, and doesn't want to admit what he is doing. If you don't say anything, then you are not admitting to wrong doing.

He is losing control in all aspects of his life.. He can control someone at night. Perhaps getting him up sooner, and keeping him busier in the day may change his night time behavior. Seems like a child who doesn't want to go to bed... Role reversal.. can you get him to a daycare facility to be around other seniors and play bingo? Or an internet game that connects other people to keep him going during the day? Keep him busy. Give him towels to fold if you can. Laundry to fold and sort. Word games. Name that tune....
Take him to a facility and be frank with him, review some places. They will invite you to lunch and tour the facility. You can get wheel chair accessible taxi cabs/vans. Make a day of it, and schedule appointments to see some places. Yellow cab , if they are in your area may have wheel chair access vans. Tell him you are out of options, nobody is good enough dad, maybe this will be better for all of us.
6 packs, homes inyour area with 6 residents and 2 caretakers. They are good too. Look them up, and rive around your area, if you see a permanent wheel chair ramp, it may be a 6 pack. Write down the address and look it up....
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These skilled facilities have more knowledge on how to handle a person like this. When you tour a facility with dad in tow, ask them directly in front of dad. My dad has these issues, which occur mostly at night time... How do you handle patients or residents with this problem? Then face your dad after the question has been addressed, and say, Dad, do you understand? You are not the only one with this problem and they are able to help you. How about we give it a try? Taste the food, look at how many people are out of their room and how they are being treated.

Location, location, location, the closer to you, the easier it will be to pop in and see dad.
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And it may be easier on your wallet.
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and your mental stablility, and you can change your site name to something a bit more calming than shootmeplease :) although it sounds appropriate.
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you can find a 6 pack for around $2800, maybe more, a month....not a week..... Seriously....

In home care is very expensive. My cousin finally movedhis mom into a facility. Mom didn't even know the difference. He said he wished he done it years ago. wouldn't make a difference, ALZ,......

guess ALZ runs in my family from both sides....
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SMP, I noticed your question about how a nursing home will deal with your father during the night.

The key difference is that the staff on duty at night in a nursing home are at work. He is, so to speak, their "day job"! So if he wants a drink, or to move around (within bounds), or needs comfort, reassurance, changing... they'll just go right ahead, aiming to help him settle.

Moreover, the routine of a nursing home is much more structured than in a domestic home and will probably be helpful to his pattern of daily life.

When you discuss this with your father, you can truthfully emphasise that the level of care at a nursing home will be better *for* *him*. Do you have a particular one in mind?
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You are a very kind daughter to try to keep him at home, cultural mores aside. You, yourself, are laying $400.00 a day to the live in? That is $12,000.00 a month, $144,000.00 a year. Nursing home care will run about the same but you will have three shifts of caregivers and an RN, PT, OT available to him. That sounds like a better plan that would be the best for him. People that work 40 hour weeks and have daily respite so they are refreshed at the start of each day. Impatience much less likely to develop, better care for dad.

You need to take care of yourself too.
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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 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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Samsung,

Smart answer! It is just too much for only one caregiver.
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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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Start touring different places. That is the first step. Try to get one close to you so you can pop in any time of day..

Write down your concerns or what you see in these different facilities. Compare, do your homework. And also know that it may be like secure deposit and/or first and last rent when moving in...

ASk them all the questions you feel you need to ask. Get everything on the table so you can visually see what it right for you and dad.
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