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Both my elderly parents 87 and 85 have caregivers during the day and a few hours in the evening. They also have someone for five hours on the weekends. I committed to one day midweek to be their caregiver. Just before the weekend I start to stress and worry that I get a call that the caregiver will call out and the agency has no one who could fill in which is why I found a group of skilled aids who are used to fill-in privately. I am 56 and have two children in middle school. I worry about missing out on their weekend activities in case there is no one to cover helping out and my parents. My brother has been temporarily staying there since my dad‘s fall also does not want to place them in AL. Unfortunately I feel that this will be my life going forward having to constantly worry plus I live an hour drive away so I’m not totally nearby to fill-in. My dad is very adamant and does not want to go into assisted living, and my mom has vascular dementia. The worrying makes me sick to my stomach and I feel that I will never be able to make plans on the weekend with my husband/kids or go away for weekend since I feel like I need to always be on standby. Appreciate any suggestions.

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You need to realize caring for an elder is a complete sh!tshow and you learn to adapt to the insanity or set boundaries. You can only do what you can do.
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I can't wave a magic wand to make you stop worrying but I have to ask - why do you feel this is your responsibility? It seems to me that even if they find themselves alone on the weekend it is up to your brother and father who are resistant to AL to own that choice, it's not your problem to solve.
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This is where you put boundaries in place.

If the care giver does not show up, that does not mean you have to stop everything, cancel your plans and step up.

If Mum and Dad need 24/7 care it is not your responsibility to provide it, nor your brother's.

If they only have care for 5 hours a day on the weekend, that means they are on their own for 19 hours each day.

Have you had a full assessment of their needs and abilities? That is where I would start.

One you have that information you and your brother will be in a better place to assess if they can receive the level of care they need at home.

If your brother does not feel they need assisted living, and they may need a higher level of care, is he prepared to continue to stay with them to meet any gaps in hours?
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Firstly, congrats on getting the home help in the door!

That can be the biggest hurdle. So well done you, Dad & Mom to accept. Oh & Brother for not taking the rediculous stance of you're the girl so you have to be the carer... Or.. is there an undercurrent of that?

I have a relative requiing daily home help. I also offered one day a week, like you. (This was after some time in the trenches at beck & call learning how to set some boundaries 🙃)

The aides would regularly cancel on weekends, or public holidays. I was them called to fill in.

I started to get anxious every weekend, call or not. Would rush by breakfast & shower in case. Wasn't sure if I could make commitments for myself. There's more to the story of how & who was cancelling but one day I decided *enough*. I couldn't live like that. I was back at beck & call, to a care agency! So a 2nd agency was arranged as backup.

That's what I suggest you do. Be signed up with a 2nd agency. It may not be perfect of course, getting a new person who doesn't know their routine etc.

Stick to your one day for your folks. Block out the weekend time for your own kids.
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Sjmomoftwins Jun 2021
I did sign on with a second agency hoping to only do weekends but they required some weeknight hours as well which ended up working out so far. Then it seemed like summer kicked in and all of a sudden Saturday or Sunday morning they decide to call out and I was forced to call my group of private aids who I was referred to. Luckily at the time one was able to cover. I feel guilty as my brother is temporarily staying there mostly because he’s local but he is a veterinarian and the caregiver hours that are required work around his schedule. An AL would be the easiest fix, I would still be able to visit my parents without having to be a caregiver and enjoy the time while visiting. My dad is worried that my mom would just be left in a corner with all the other wheelchair-bound dementia patients. Also he remembers visiting folks in a nursing home in the past when he was younger and how they basically were left sitting around until an aide got around to them. He does not want to end up like that.
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Can you task the weekend caregiver with the authority to replace herself if she cannot make it? You can take yourself off "Standby" for the weekends at least.

Provide her with the relief staff contacts, and ask that she not 'call out' unless she has someone arriving in her place for her shift, before calling you to let you know?

As a temporary secretary (volunteering) for a nursing staffing company, getting the no-show errant nurse to call back; and also getting the relief person to answer and agree to go was a tense time. When I called the missing nurses, I left messages to call back and answer if they wanted to be taken OFF the scheduling. And that they would need to counsel with the owner to be put back on the schedule.
The nurses started to take the schedule more seriously. But being the in-between person was really hard. So I understand your concerns about your making plans and about being on standby. It is good you have a list of willing aides to stand by. That is really smart!

If you have covered all the bases, there can be less worry. 🤗

Being strict, I would also suggest the nurse to go there and wait for a relief aide to show up to relieve her shift, if possible. That is if no one has been found.

Maybe after some successful weekends you can start to enjoy your family time.

If there was at all enough money to go around, I would schedule 2 caregivers to come on the weekends. 1) 8 a.m. -11:00 a.m., and 2) 10:30 a.m. - 2:30 p.m.
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What your parents want may not be what they need. Do not fill in on the weekends.
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I would not be overly stressed out about this. Your father is adamant as you say about remaining in their own home. So, how can you change his mind about not entering a facility? You can’t. I assume that you have explained that assisted living facilities are not what ‘older’ nursing homes were like in the past.

As far as ‘weekend’ help goes, you have made arrangements for others to fill in. Pass those phone numbers along to your parents and your brother. You are fortunate to have a brother who helps with his parents. Not all sons do this and everything falls on the daughter. I took care of my parents. It’s a tough job! I understand that you don’t want to miss out on activities. I missed out on a lot of things.

What would happen if no one would show up? Do you feel that is what it will take for your father to realize that they do need to make alterations in their lives? Would you cave in and resentfully stay with them on the weekends? Would expect your brother to do it? Would either of you tell your parents that you deserve to live your own lives and you will not be available for them?
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Sjmomoftwins Jun 2021
We come from a very traditional Italian family, both parents are from the old country (Italy). We grew up believing that Italian families do not put their elderly parents in a nursing home they take care of them and both their wishes are to continue living home. My dad’s mom lived with us growing up until she died.

We currently are remodeling the detached garage to make a one level apartment walk-in shower and live in space for them. Because my brother is local I’m sure he will need to continue staying there at night to ensure their safety until he has had enough and decides to do an overnight aid. My twins who are 13 now are my whole world and took me a long time to Conceive so I do not want to miss Anything about them growing up.
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A big factor will be how OK they are with no aide for the day.

Inconvenient or a real safety concern?

No help getting dressed, to wash, have a hot meal served, be driven somewhere?

Or unable to get out of bed, get any sort of meal, water, meds, continence care?

My relative has decided staying home is priority one so she is willing to accept no care on occassion, even though this results in staying home, missing appointments, staying unwashed & undressed. Not ideal, but as she can do food & meds, is not so dangerous.
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From your profile: "I am caring for my mother Anna , who is 84 years old, living at home with alzheimer's / dementia, arthritis, incontinence, and mobility problems."

What are your father's health issues? Why is he "finally getting stronger to walk again"?

" They cannot be unattended for long as they both need help with bathing and toileting."

"We grew up believing that Italian families do not put their elderly parents in a nursing home they take care of them and both their wishes are to continue living home. My dad’s mom lived with us growing up until she died.

We currently are remodeling the detached garage to make a one level apartment walk-in shower and live in space for them. Because my brother is local I’m sure he will need to continue staying there at night to ensure their safety until he has had enough and decides to do an overnight aid."

Who is paying for the aides now? Your parents? Do you have POA/HCPOA? What is your parents' financial situation? What is your brother's role in all of this? Why isn't he willing to take them in?

There weren't the medical procedures in the Old Country that there are here and now, so consider your parents could live to a very old age although severely compromised. Is there money for eventual 24/7/365 care for them? Or is that going to be the plan for you? Who is paying for the remodeling to your home?

While it all sounds so good now, realize that things could change drastically for your family once your parents move in. And your children's lives could be greatly affected. Please read through this site and see what you are going to be in for as your parents age and they are living in your house.
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Sjmomoftwins Jun 2021
Detached garage is theirs and they are covering the cost. Financially now they can afford the coverage only because they knew how to save their money and invest for a rainy day as my mom would say. 10 yrs ago my brother wanted to add on onto his property but they politely said no and ‘weren’t ready’.
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Imho, do not worry prematurely. You may be inadvertently causing yourself unnecessary anxiety. Perhaps it's best to save your emotional and physical strength for what will be required in the future, especially since your dad wants to live in place.
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I was going to suggest you find qualified people to fill in — but your question suggests you already have.

Alternatively, as for the sporting events, etc., your parents would probably love coming along once in a while. I understand that would make for a long drive, but it would also make for wonderful memories.

If you feel you are neglecting your teens, look at another perspective — you are training them to put family first and how to maintain a relationship with elderly family members (this will be you!).

Remember to savor every minute with your parents. They have already outlived the average life expectancy in this country. Time is fleeting.
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Unfortunately many of these situations are only resolved by a crisis. Unfortunate, but that’s what it takes to get a stubborn senior to move. It is going to happen eventually, the only question is when and how bad. You can only do what you are able/willing to do and you cannot do more nor should you. The situation is unsustainable and will eventually resolve itself, not necessarily the way anyone wanted. It is what it is!
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BurntCaregiver Jun 2021
LakeErie,

Unfortunately, you are right. More times than not something bad has to happen before a "stubborn" senior will accept that their situation has to change for their own safety and well being.
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It might be worth finding ways to include your parents in the kids' activities. My Gram (98) enjoyed all of her grandchildren's sports games. She was in a wheelchair and didn't know everything going on, but she had a blast being included in whatever was going on.
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Your parents should be allowed to stay at home as long as they can and want to.

It's so much better than being in a Senior Home where they lose themself and have people telling them what to do all the time.

Senforcement Homes can seem great and let you see and think what you want to see and think and tell you everything you want to hear but it only eases your mind, it's not best for your Loved Ones.

Most are very understaffed and if you can't get to the bathroom by yourself than expect to have accidents or ask to go to the bathroom 30 min or more before you actually have to go.

Also, If your labeled a trouble maker and it may only be because you ask for help too much, they will let you know that medication needs to be given and then your lived ones end up on meds to calm them or whatever reason they come up with to make it easier on the Nurses and Aides and your loved one will be passive and more zombie like just so they just sit in their chair and not bother anyone.

You just need to get over yourself from worrying about them and know they are much better off and happier and feel safer in their own home.

You might get a Camera installed so you can check on them anytime you want 24 7.

I had my son install 3 Nest Cameras in the main rooms my 97 yr old Dad goes in.

I have 24 7 Caregivers for him but I felt so much better after the cameras were installed. because even some Caregivers need to be repremended and my Dad with short term memory wasn't able to tell me what happened because he forgets like 5 or 10 minute's.

You already have Back Up Care arranged in case someone can't come which is great on your part.

What you should do is hire a couple Caregivers to fill in the one day you said you'd be the Caregiver.

You'll feel much better to just be visiting not be a Caregiver.

This way if something happens you'll be able to have additional back up from more than one place.

Beleven me, your parents are way better off in their own home.

Praters
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Riley2166 Jun 2021
Parents are better off at home BUT IF THEIR BEHAVIORS AND NEEDS WILL DESTROY YOU AND THE REST OF THE FAMILY, this is not going to be possible. They have lived their lives and now it is YOUR turn to live.
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I've been there. I would cry and cry. For so many years, I was afraid to make any plans for fear I would be disappointed when I had to cancel them because I would get a call from my dad or the agency. It became a real problem. Constantly torn between my dad and my husband who was tired of me not being available on the weekend. Caused some real problems in my marriage. Everyone involved in dad's care knew he needed to move from his house.. Fast forward to September 2019. Dad was 93 years old. Dad freaked out in the middle of the night. I rushed to his house. We went to the hospital and they said he had become dehydrated. The hospital said this WOULD happen again and that he could not return home. That's when we finally got him placed in assisted living. It took an 'event' to make this happen. After numerous falls and a stint in skilled nursing, he now resides in a small memory care facility where they take good care of him. He is totally wheelchair bound. Although, even in his confusion, he still talks about wanting to move home and drive a car again. Some things never change.
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As they get older their needs will get more profound -- it only gets worse.
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You are getting burned out! You have to make some changes. Your responsibilities to your husband and children, and to your own needs, should take first priority. You and your family need breaks and need to be able to take vacations. Can you parents afford to have a caregiver come in on the day that you have been doing? Make sure that all of your parents' paperwork is in order (setting up power of attorney in case they are no longer able to care for themselves, a living will so that you know their medical directives, a will, financial institutions also have their own POA forms, and someone needs to be on file with Medicare and Social Security so that the POA can speak on their behalf). Are you POA for them? The POA for your parents is responsible for making sure that they are safe and are taken care of. Have a talk with your father about their ability to pay for more in-home care. If you are not using an agency to get their caregivers, have some back-up names, in case their caregivers cannot work on the scheduled days. Caregivers also need breaks and time off. Hire people to do the cleaning in your parents' home, and maintence, shopping, etc. You don't want to miss the time with your children while they are growing up, and your children also need you to be there. Get things set up so that you are helping to manage your parents' care, but not doing it. Your visits to your parents should be loving and joyful family visits, and visits to discuss your parents' needs and care, not for you to be working there. If your parents have a lot of people in their house, it's best to lock up their valuables and financial papers. Also, one thing I didn't do with my father, but should have, is to get information about all of his online accounts and passwords. Plan for your parents living 10 or more years. And it's possible for their health to continue to decline so that they'll need more care over time. They and you should know what they want to be happening if they get to the point where they cannot do anything for themselves.
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Life happens. In-home caregivers to the elderly get sick too. Or take a day off, or just need a break from work. Have you ever taken a sick day off from work? Or a personal day? Or vacation time? I'm pretty sure you have and do.
Pretty much unless you move your parents into AL or a care facility there's a chance that you will miss one your kid's soccer games once in a while.
Unfortunately, when families hire in-home caregivers far too many truly believe that their elderly "loved one" is supposed to be the top priority in the caregiver's life. That nothing else matters and they come first. It's a job. Is your job the top priority in your life? Do you put it before everything and everyone? My guess is no. In-home caregivers don't either. We have our own lives and families. We get sick and take time off from our job. We like to go to our kid's soccer games. And sometimes we just need a day off. So we call out and we take one.
Just like you and the rest of the world.
If you want to go on a vacation, hire a temporary stay respite care worker to stay at your parents' house. The choice is accept the help or wait for something bad to happen which will mean nursing home placement. This is the only way. No one wants to move out of their home or see their life change. This is especially true with the elderly. I'm sorry to say, but sometimes our "stubborn" elderly have to learn the hard way and something has to happen before they accept that their living situation has to change.
Go ahead and make whatever week-end plans you want. Or plan a vacation. If one of the caregivers cancels and your father calls you to come, you have to tell him you're not. That because he refuses to do what's best for your mother and himself, he's on his own. It's hard to do this, but you'll be doing both of them a favor. Your father will hopefully see reason. Good luck and I hope it works out for you and your parents.
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Good morning or Afternoon depending on your home is located. As a Supervisor in a homecare agency. I would suggest that you call the agency to have them check to make sure the caregiver is indeed coming in. The reason I am saying this is bc we do this. We reinforce this. We do this for families that we know are going to need the extra support. We make a reminder call to make sure the caregiver will be in. Then call or email the family. If there is any hesitation at all with the current caregiver. I remove them and TRY to fill the void. I don’t completely remove them until we have someone that WANTS the hours. If I feel that someone else will fill the schedule with out hesitation I will switch it up. Then let the family know what is going on.
It works. Another way idea is to call the agency and have a long talk with the Supervisor or whomever handles the schedules. Tell them how badly you need to have the help. This is just an example: we had a husband come in and talk to us about his wife’s needs. He stressed the fact that he goes out of town. We received the dates he leaves. We in turn call the aides that are supposed to work these particular days and reiterated the fact the she is needed and the family won’t be able to back up. It’s working great
( so far).
I would have a long talk with the caregivers immediate Supervisor. Let them know what’s going on ; (your thoughts matter). If you’re current agency can’t help you or doesn’t have back up call in a different one. Your going to have to get the Service Coordinator involved if you need to add an agency.
Please don’t get me wrong we make sure all aides are aware of their schedules however, this industry is extremely short handed. Ppl don’t want to work. They are getting more staying home, or working elsewhere bc the reimbursement rate is terrible.
Talking with the agency helps tremendously. They need to feel you’re concerns. You need to tell them how you feeling. Threaten to remove the hours to a different agency. This should get their Superior to hear you.
The unfortunate part is that we can’t force them to come in ; although we can threaten their position if they don’t. A no call no show is a person (in my opinion) who doesn’t care.We will let them go if it’s not an emergency. Sometimes ppl take advantage if they are given too much slack. Maybe the agency is too lenient. I don’t know.

If talking to your agency and or adding a different agency to help fill the hours doesn’t work. You can take a different way. Turn the agency in for not showing. This is called abandonment on the agency behalf. You will get you somewhere hopefully doing this.
This is a big step though. It’s drastic. Getting the Dept. of aging involved Can get the agency in trouble.
My advice is to talk. Talking about how you feel MATTERS! This is your family and please step up ( if you already haven’t). Your parents have rights and the agency knows that. As do you as an advocate for your family.
You said you work with the agency? You may be able to have a heart to heart with someone at the agency that you feel comfortable with.
I know that I have suggested talking many times. I can’t stress it enough. Also, don’t worry about being an employee through the agency you’re having trouble with. Most agencies love to have family help family. Do you have anyone else that you trust to work these days that are in question? If so, see what you can do about getting them
on board with this agency. This helps out a bunch especially now that Homecare is so short handed.

I hope you can get past this bump in the road. . It’s very difficult time for everyone. The world needs to come back to life soon. Seems like most places need help, not just the health care field. Good luck to you and your family.
Take care!
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BurntCaregiver Jun 2021
Caringangel,

You are indeed mistaken about people not wanting to work.
No one is going to take on some miserable caregiving position every week-end for minimum wage or just above unless they are indeed desperate. Don't expect reliable quality care from any person so desperate. Also in-home caregivers are essential workers. They're not the ones benefitting from the sweet unemployment compensation as of late.
There's an old saying. "You get what you pay for".
If care agencies made it worth someone's time to take a job week-ends with lousy hours, they'd get good people. They don't though.
The office staff who gets benefits like insurance, paid sick time, holidays, vacation pay, week-ends off - make better money then the aide in the home who gets none of this from their agency, yet are the ones changing the diapers and baby-sitting the dementia.
I always say hire private if you can. Offer people good money and you'll get good service.
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This is heartbreaking and just sick and cruel - to YOU. You must take control of your life by whatever means are available. You sit down with the family and immediately set boundaries - and if this means there is NO caretaker, that is NOT your problem. It will be most difficult to get up and leave or do what you must but I see this as the only option to force the issue of more backup care (YOU SIMPLY DO NOT DO IT - WALK AWAY) and you must speak with an eldercare attorney what YOUR rights are. This should not be happening to you. I have a firm belief I stand by - when the behaviors and actions of the patients and family members who are supposed to help but do not, then you must take appropriate action. You need help and they need help. I think unless your brother is more willing to help and more caretakers can be positively assured, it is time for placement. Do not let others destroy your life.
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TouchMatters Jun 2021
I'd add that this woman is setting an example to her children "in middle school" and certainly old enough to understand - self-care, self-respect, setting boundaries, holding EVERYONE accountable is essential.
This woman must take measures to stand up for herself - if she cannot do it for herself, she needs to consider her children and realize the lessens they are learning about themselves. Yes DO NOT LET OTHERS DESTROY YOUR LIFE. Do not allow your teens to experience this happening (to you, and them / the family unit).
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I feel for you. I don’t think there is a clear answer here. Both of my parents needed care when there was a blizzard and no family member and no caregiver could get to them. I wonder if there is a neighbor who would look in just to make sure they have meals and haven’t had a fall? Of course you can’t ask a neighbor to deal with any incontinence issues so perhaps a back up agency is a possibility but weather happens along with other emergencies. You need to take care of yourself and I recommend meditation techniques for calming. You can get instructions on calming breath etc. online.
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You seem to be more worried about what others think than you care about your own health and about your children.

If this caregiving thing doesn't work for YOU, then it doesn't work.

"I can't commit more than one day aweek to this venture; if that doeant work, you'll have to make other arrangements".

As women, we are trained from birth to give in, please others and lend a helping hand. It's high time you stood up for yourself.

And if the menfolk get mad--so what?
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TouchMatters Jun 2021
Thank you Barb.
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sounds like they need 24/7 care so unless you can find a reliable company that provides that you will always worry.....even if you find 24/7 care. Now with my mother in a nursing facility (not due to dementia but just can no longer care appropriately for herself and I can't be there 24/7), i still wonder some nights IF I will get a call indicating that her breathing is worse or she choked on something, but I try not to dwell on it. Your mother will only get worse and IF your father can't take care of her, you and brother will eventually (hoping you are both POA or one of you) have to make a decision to place them or hire someone to work in shifts of 24/7 care. Wishing you luck. otherwise, go away and if something happens.......you might have to interject and call 911 to go to their house until you can get there.
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"Turn the agency in for not showing. This is called abandonment on the agency behalf. You will get you somewhere hopefully doing this."

I have never heard of this. I do not know if this is true (statewide or nationally).
Frankly, why would an agency be in business if this legal 'remedy' is hanging over their head. DO READ THE CONTRACT YOU SIGN with an agency. If this is a loophole, they likely cover (themselves) in a contract so no liability.
Possibly, this stance may be an ace in the hole, however doesn't do anything in the moment with a 'no show' in present time. Not to mention that this agency would not be available in the future should they know you reported them.

* It seems to me that the only way to manage this is to have a back up for the back-up. No-shows happen. Traffic happens. Personal emergencies happen as well as "I wanna go out with my friends tonight" happens ... It puts family / the person needing care in an awful situation. I wonder if a live-in is a possibility? Not that they would be 'on 24/7' although you might be able to discuss this potential need on occasion.

First, you must stand up for yourself to get your needs met in order to (1) function; (2) be available to care for your parents; and (3) set an example of self-respect, self-care to your teens.
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It seems an agency should be able to provide a sub is an aid calls in. Maybe you need to find an agency that can do that. I think you are wise to have the pool of private aids for fill in when needed.

As long as your patents are dependent on some help, you may have to remain flexible about your own weekends.
For several years I did not take a promotion at work b/c I needed to be available if my father needed me at a moment's notice.
Only after he died could I take the promotion and work full time.
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Have a backup person/group of caregivers from the agency or your church for example.
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Have a back up plan that can be called.
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