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I'm losing my mind. What can I do to stop this?

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What time does she go to bed?

Her internal time clock is off and needs to be reset. I am sure some one will chime in and help you with this.

When my dad was in the hospital his time clock got reversed, so he slept all day and couldn't figure out why the night person staying with him was aggravated that he kept calling out for stuff all night. I wasn't there every night or it would have killed me.

Do you get any time off and are you generously paid for being a 24/7 on call caregiver? Your employer needs to think about bringing in an overnight person or you will crash and burn, as you are already feeling the insanity of 24/7.

You have to take care of you as well.
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I talked to her and we made an agreement. She goes to bed at 630 because she's always tired. After a long conversation I found that she wants quiet time away from her husband. So we agreed she can stay up a cpl hours after he goes to bed as long as she's in bed by 11 when I go to bed. So I'm not getting woke up a 2 am because she fell. I need a break but they can't afford to pay a second person to come in.
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Tammy, I hope that helps you and helps her not feel so tired and gives her some space from her husband.

Let me know how it is working out.

I am happy for you that you were able to communicate and come up with a solution. Good to know that is an option for future, if needed.
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I would question her to see if she recalls your verbal agreement. If she continues to get up at 2:00 a.m. to perform odd tasks, after promising that she wouldn't and then keeps falling down.......I'd wonder what is going on with her. Maybe, she needs to consult with her doctor about it. When a senior says one thing, but, then then repeatedly does otherwise to their own detriment, it causes me concern.
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Tammyrex121277 Feb 2019
She is seeing a Neurologist, when she was 24 she had brain cancer and wasn't supposed to live more then 6 months. It has now been almost 27 years so we know there are some effects from the chemo and radiation and from the brain surgery. I think there is Definately some memory issues and possible even difficulty understanding what we talk about
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NO ONE can be on call 24/7!! PERIOD!! Set times that work, and get help procuring professionals for the other times. Your life/health comes first: if NOT, you will pay with a nervous breakdown or heart attack ( like a cousin of mine)! Consult doctors, home care resources, social services - whatever. I cannot emphasize enough that ONE PERSON cannot do it all. I speak from experience...
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Tammyrex121277 Feb 2019
They have no family that lives close by and I live about 5 doors down from them. Yes I am burning out but every time I try to get a nurse to come in I am told they will only come in if they are homebound. Well they are not. I haven't had a vacation in 2 years and have to be there 7 days a week to push him up the ramp in the am and down the ramp in the pm. I'm at a loss as to options because they don't want anyone else to care for them
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You say you are at a loss because they don't want anyone else caring for them. They don't have the right to hijack your life, period. People that need help can not be so stubborn and selfish, oh don't get me wrong, they are, but you can set boundaries and stick to them and they will work with you or throw a temper tantrum and what will that get them.

So they leave in the morning and don't come home until afternoon and they expect you to be there so he can get in? That is being completely unreasonable and asking far to much.

Are they low income? Perhaps the medical challenges that they have they can get some aid, maybe he can get an electric wheel chair. There has to be options besides holding your kind hearted neighbor hostage. Look at it from the angle that you ended up in the hospital, what would they do? This might help you say I can't do this 24/7/365 for years on end. They are young and need to take responsibility for themselves and get some realistic expectations of what they can ask of someone.
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If they are unable to see the absurdity of their demands, I'd be concerned about their judgment skills. I'd likely contact their closet family member or Durable POA, regardless of where they are and invite them to take notice and get involved. The couple may not be thinking clearly and need someone to get real with them.

Also, why would home aids only come to help people who only home bound? Is this through some charity or government program? I would think that home care aids come to help seniors who have all kind of needs.
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worriedinCali Feb 2019
At least of one the people being cared for isn’t a senior yet. They both appear to be rather young but in pretty bad shape.
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What do you mean, they can't afford to pay a second person to come in?

The only way that statement can be true is if you are doing unpaid hours. Does this couple have a lead social worker or anyone you can talk to? How did you come to be their caregiver?
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Tammyrex121277 Feb 2019
I started out as a cleaning lady 3 days a week 4 years ago. Now I do everything but feeding and bathing.since ive been there her husband has had an amputation and she has had minor strokes. I am private and yes I do get paid. He is a disabled Veteran so doesn't qualify for low income help at all.
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"I am told they will only come in if they are homebound. Well they are not. I haven't had a vacation in 2 years and have to be there 7 days a week to push him up the ramp in the am and down the ramp in the pm"

If someone has to be pushed up and down a ramp 7 days a week because they are incapable of navigating it on their own then that is the very definition of home bound, isn't it? It's the fact you can't get out without assistance, not that you can't get out at all (which would be almost no one IMO). I too am wondering who "they" are that is giving you this information? And who hired you and signs your paycheck?
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Tammyrex121277 Feb 2019
They were told by their insurance company because they are not seniors. Even the VA won't send them help. I was hired by them. They sign my paycheck
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The man does qualify for assistance through the Veteran's Administration. No one person can be on call 24/7.
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I think that any employment agreement, even an informal verbal one, usually covers the hours you are expected to work and a description of the duties you are expected to perform. This needs to be treated as a job just like any other, you put in your time and are then off the clock, none of this 24/7 on call BS. The fact that you live nearby is both a blessing and a curse, they have abused your proximity and caring feelings to coerce you into being a virtual slave who jumps when they call. They won't be motivated to make changes as long as you keep stepping in to rescue them, it's up to you to grow a backbone and rewrite your terms of employment, including reasonable work hours, days off and vacation. It isn't your responsibility to figure out what they need to do to fill the shifts when you aren't available, that's all on them.
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Tammyrex, I fear that you have been bamboozled.

In home health is not about age but need. Being a disabled vet doesn't disqualify you for low income assistance, unless you are already getting federal assistance through the VA. If that is the case, then he could get some in home health, VA offers this, especially if he was wounded in combat.

I know we probably seem harsh and the reason people are freaking out is most everyone here has had to figure out care for a loved one and that includes financial aid. I think we are seeing some red flags and we are bringing them to your attention. Because you are being taken advantage of, 24/7 on call proof.

Anyone that doesn't feel that way is obviously excluded, so please do not think I am speaking for you.

Get the facts and make decisions that are best for you. You can not continue 24/7 without having caregiver burnout, it is just to much for anyone.

How is the sleep cycle helping?
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Tammyrex121277 Feb 2019
He gets Va pay which is about 3000 a month plus they both have disability that puts them around $6000 combined income. He wasn't wounded in combat. He was medically discharged because of his diabetes. I DO feel as if ive been bamboozled but not sure how to go about finding them other care. Remember I'm a glorified cleaning lady.dont have no experiences in nursing or how to get them assistance
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Jeepers, Tammy - call whoever at the VA put you into this job and tell them what's happening. This is a bit like being asked to mow the lawn and then finding you're also in charge of landscaping and mending the roof - it's crazy, and your clients just like it because they like you and they'd rather not be bothered with any changes. They're being apathetic. Time to call for help - and don't be nervous about it, you're not doing anything wrong.
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$6K a month is a healthy income and they should be able to afford to hire caregivers. That's caregivers with an S, meaning more than one person so that everyone works reasonable hours and can take time off. Like I already said, why would they feel the need to bring in someone else when they have you willing to jump whenever they call?
Oh, and don't answer the phone after hours, if she falls he can call 911. Tough love, but if you don't set some boundaries you are going to flame out.
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I request to get an alarm for her bed so you know when she is getting up,and tell her it is is not time to get up yet.
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I am with CW that $6k is a healthy income. If they can afford to pay you for 24/7 care then they can take part of your pay to hire a second caregiver.

You need to tell them straight out that here are my hours and days I am willing to work. That you no longer can do 24/7 days care. No one can not even Superman!

These people are not your family and yes it is great you are willing to help them, but they are taking advantage of you. They are not showing you respect nor are they giving you basic human rights. You have the right to have days off and to have a life outside of them. As someone stated "it is not your problem to find the solution to their problem if you can't be there at all hours." It is their problem don't make it yours!

Like CW stated "as long as they have you jumping whenever they call, why would they get more help in?" You must stand up for yourself and I am afraid that might mean losing your job; however, is the job more important than your health or missing out on life? I would think not!!

Just my 2 cents!
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Okay, you need to stop owning their situation. You can't do anything for them anyways, no one is going to deal with you as a non family member, you have no authority and you are taking responsibility because they are pushing it on you.

Make a list of agencies, your local council on aging, veteran's assistance, some home health agencies and such, give them a copy and kindly explain the attached letter that is a care contract, including hours, days off and pay.

One of the reasons he gets money from the VA is to pay for care, they don't just give people money, it has to have a purpose and I have seen where people get a windfall because the Aid & Attendance is retroactive to the date of application. They sound like they are not using the money as it is intended, that is not your problem.

It is truly unfortunate that you are in this difficult situation but you can get out or get reasonable hours, days and pay. It is up to you to say enough is enough.

Why doesn't he buy a motorized wheelchair or cart? He has the money. It is to easy to put it all on you.

If you start saying no and enforcing boundaries they will be forced to take responsibility, if they don't then you call APS and report 2 people that are not self caring. If you cover the hole and prop them up they will not get the help they need and they will devour your life. They have already shown you this.

You of course will be the bad guy, tears, anger, manipulation and all sorts of fun things will get thrown your way to guilt you or make you feel obligated to continue to be their go to girl.

They are responsible for themselves. Step back and force them to handle it. Don't take we can't get no help as a truthful answer. It's not, they can get help they just aren't willing to pay the 25 to 30 dollars an hour with a three hour minimum.

You can do this, you can take your life back.
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Tammyrex121277 Feb 2019
About the motorized wheelchair he has 1. The ramp im using is an 8 ft long removable ramp on a 21in stair. If he uses the motorized wheelchair he will end up through the fridge in the kitchen. Trust me my SO and I tried it and it's not safe for him. I talked to them both last night after i found another diabetic ulcer on his one remaining foot. He is calling the VA today to get some help in. His wife has been sick for 3 days and refuses to get out of bed. Ive had it. Ive tried talking, reasoning, crying and yelling and it just doesn't work.
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Tammy, you are an angel, but you are talking, reasoning, crying and yelling to the wrong people! Cover your a** and call the VA yourself - don't wait for your uncooperative clients to do it.
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Isthisrealyreal Feb 2019
Great advise.

Tammy if you were a licensed caregiver you would be a mandatory reporter, meaning you would be obligated by law to report the situation to the proper authorities. Be sure and ask the VA who you call to get these people help.
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Thank you to everyone for all your advice. I have one handedly solved the entire problem. My SO and I are opening the bottem level so they can go to bed if they want. They will have freedom and so will I. I can get my vacation finally Yay
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