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When my mother was dying 6 years ago, I hired a respite care worker from the only agency in the area. The only person they could send me was terrible. Nice enough person but tons of personal problems and constantly sick. At one point I went to shower and when I returned the caregiver was in tears about her boyfriend and my dying mother was handing her tissues. Needless to say, I had to handle the last 6 weeks of her life by myself, as there were no other options. I also ended up paying about 1000.00 for care we didn't use because my mom didn't want her around.


So now I have been caring for my father with dementia for 6 years. He lives with me and my husband, I quit my job, we can't go anywhere or do anything, haven't had a day off in 6 years. We both have serious caregiver burnout. However, the only option would be the same place as before.


I feel like I am already managing so much, I don't have the energy to take on some strangers problems, which is my experience.


What do you do when hiring help makes you feel worse and causes more stress?

Find Care & Housing
It is hard to find respite care and agree that it causes more stress. In three days I planned on attending a wedding and made arrangements. The caregiver just cancelled this morning when I called to check in with her. She is concerned about the virus upsurge. The location is two hours away and it feels easier to bring mom and wheel her around in the wheelchair to the wedding. I've just spent the morning calling to find a replacement.
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Reply to Pasa18
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Thanks for the suggestions. I did call the 2 agencies in the area but they don't have anyone available. There is no nursing school and private caregivers are non-existent here. Hotels in my area offer 1k signing bonus for front desk, so no one wants to do senior care. And NO. The last few months have proven to me that I don't deserve a life, I don't deserve love or compassion, I don't deserve anything. If society were set up that way there would be help. I wish everyone would stop spouting that crap.
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Reply to Toofargone
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I only use an agency,
Does that eliminate all the problems? NO! But it puts it on someone else's back.

I generally know after 1 day whether or not my wife will accept someone new. If I see troubles and strife, I "Nip it in the bud" and tell the agency to get someone else.

The agency I work with likes me. Because of COVID the owner/manager has never met or even talked to my wife. (My wife doesn't do good on the telephone). I provide the agency with income for 70 hours a week, and for most of the past year I have been their number ONE customer. I have given the owner interviewing tips as I was in retail management for around 25 years before I damaged my back and became disabled.

One of the best questions I learned to use is: "If I have narrowed my search down to you and 1 other person, wit equal qualifications, personalities, experience and equal references, why would I hire you over the other individual"

That question has led to many good hires and help me avoid many bad hires.

Check references with open ended questions, leave some uncomfortable silence between questions and most people will talk more then they had planned on. Use this for your interviews also. Ask listed references if they know of other people or places the individual has worked for and call them also( if not given as references

If you hear something that might be a red flag, it usually is.
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Reply to garylee
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Try looking for someone who works independently and has good personal references. Tell them directly that you cannot allow any personal nonsense to be involved in this position. You really can’t allow it, it creates stress on the family the care giver needs to be serving.
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Reply to IamAmy
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I did not have a good experience but my parents were the final people to make the decision. I do have some things that helped me know something was wrong.

First of all... ask and maybe even offer to pay for a federal background check (I wanted to do this but my parents did not)... this would have saved us... the attendants who were in the crime ring had several previous criminal charges. Many agencies won't do a federal background check unless you offer to pay for it

Another thing to do is you do is if you don't and maybe if you do trust the attendants, change up your schedule and don't tell them your schedule

You can get cameras

Don't give them a key

Hide valuables or put them in a safety deposit box
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Reply to Mmm777
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No I haven't had a good experience getting home nursing assistance for my Mom. It's been over a year since I quit working a 12 hour continental day shift at King's Hawaiian. I quit partly because of extensor foot tendonitis and some arthritis in my left toe. I took her to the NE Georgia Medical Center ER about 10 time total mainly because of the Constipation she has regularly. She's 89 years old now and I've had 3 nurses at the Medical Center tell me she has dementia. Her Doctor at MedLink Clinic referred her to Prospero Health in Tennessee about a year ago. She got an NPC named Mildred to come once a month. My Mom takes about 5 laxatives including MiraLAX but I buy her Clearlax which is Walmart's Generic brand. It costs less. Having to do this on my own is very hard on me and its mentally tasking. My Dad is a sociopath and I know how bad it was living with him in Miami 30 years ago. He's been diagnosed Bipolar about 8 years ago but he denies it. That's what my Step Mom told me by email. I've been looking for a remote job but its not that easy. I have worked at Factories or Manufacturing Plants since 2001. I'm a PC Whiz and a Techie. I can build my own Desktop PCs but its been a hobby for about 19 years. Anyway I have an older Sister that works in Sacramento and lives in Lotus, CA. She's planning on moving back to her house in Dahlonega she has been leasing, so she can take over as Caregiver for our Mother. She's 65 and retiring.
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PaulC53 Jul 13, 2021
Ok I have no problem replying to my comment. This is wrong and a another example in my life for being set up. I don’t want to kill myself but I think of how peaceful the afterlife is. On July 15th I’ll be 54 years old in a cruel world. American dream is not what it seems. Especially when your Dad is a Cuban sociopath and your Mom is a retired Social Worker who had a 185 IQ. It made me realize intelligent people like that aren’t nice. She is tough and my own Dad said it. I live to see his demise. Hell awaits him. So my Mom may just make it through another year. If she could just cut back on the laxatives.
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Try if it serves your area.
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ACaringDaughter Jun 28, 2021
I keep writing the website I used, but apparently I’m being censored.
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It was very unprofessional of the caregiver to behave like that and bring personal issues to a work setting. Try looking into other agencies. Maybe someone older who is more professional.
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Reply to SeniorsHelp
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Divide and conquer! Split time so one can have that respite! Wish I had another to help split time! Count your blessings and realize your time could come at any time. Plan ahead now! Remember how much you love them and that will pay you back 10 fold!
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Reply to shubnad
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Imho, it is IMPERATIVE that you speak to the supervisor of this quite inadequate caregiver, else if you say nothing, how will the supervisor know of the ineffetiveness, e.g. all would be assumed to be status quo when it is not the case at ALL? My late mother had such an inadequate helper UNTIL I reported her to her supervisor. She never set foot in my mother's residence again.
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Reply to Llamalover47
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Our family is having a good experience. My MIL has 2 caregivers that care for her in her home in Hawaii. She refuses to stay with us or her other son's family because Hawaii has always been home for her. Long story short, she has dementia and can not live alone. 2 wonderful women care for her in her small condo and keep everybody up to date.

In your situation, you need more people helping you. Ask family, friends, members of your faith community for help. Try again to secure home health assistance. Keep in close contact with the agency if an aide seems to have problems. They are taught not to bring their live issues into their work environment.
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Reply to Taarna
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* If a caregiver is in tears, immediately call the agency; ask for a refund and a new caregiver. Obviously, this person is was not physically nor mentally able to work.

* As a vetted care provider myself for a senior housing complex [although I contract directly-work independently with residents], I had to:
- get finger printed (criminal check)
- provide work and personal references
- show proof of car insurance
- Get TB tested (yearly)
If you hire directly, get the above addressed PLUS VERIFY references - from clients and, as is possible, their family member.

* - If you feel you are 'required' or 'automatically' take on some stranger's (or strangers') problems, why do you feel this way? You need to evaluate how AND WHY you interact with a caregiver as you do.
- You need to be aware of your own boundaries before you can set them with others; in essence, why would you feel, or believe, you need/should take on a stranger's problems?

Agencies vs ind contractors.
Agencies have workers' comp and insurance (check)
asking people in churches. All good although be clear on if any benefits, how falls or injuries on your time are handled. Write up a good contract. I do not know if you are legally responsible if a caregiver gets injured during the hours they are hired/working for you.

* You need to screen care providers.
Have your list of questions ready.
- Ask about reliability - and see how they respond to telling them it is important they be on time and keep to a schedule (and only call in 'unavailable' in dire emergency).

* If an agency has ONLY one person to send, I would question the agency or their reputation. This doesn't make sense unless you want someone at 4 a.m. or some very unusual situation, with schedule or needs.
- Ask potential caregiver if they have children and if they may need to take time off for their family / kids (while understandable, it is not going to meet your needs for hiring).
- Sit down and thoughtfully create a list of questions, outlining YOUR needs for care support to help YOU and your dad.
- Create a couple of possible scenarios that could come up and see how they respond - how would they handle situations?
Ask - at what point would they:
a. consider situation an emergency
b. when would they call you (c) or 911?

* Be sure to ask the agency how thoroughly they screened their employee. Ask if they require references and from who, and what criminal background check they do.

* If you haven't had a day off in six years, you need to re-evaluate why you are doing what you are doing, esp if you/r loved one can afford to hire a caregiver. Gena / Touch Matters
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Reply to TouchMatters
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I found a fabulous caregiver we used for 2 years. Hate it when we lost her. (Covid). We do use an agency. We have had a good caregiver. A sucky one. A sucky one. A terrible o e. A good one and now 2 great ones. You just have to communicate with the manager and say nope I want someone else and why. Squeaky wheel and all of that.
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NeedHelpWithMom Jun 27, 2021
Totally agree with speaking up about those not doing an adequate job and I feel that those doing a great job should be complemented and shown appreciation for their efforts.
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It is probably time to move Dad to a facility. If money is an issue, be sure the place takes Medicaid. I hope your Dad has been paying rent, other expenses and you for your "job" and you have kept his assets separate from yours as he will need to only have a few $1,000s left before Medicaid will cover him.
My experience with agencies has been varied, but mostly not positive. They will tell you yes to everything you request and send whatever warm body they can find. Finding private help takes diligence, networking, lots of checking and luck. The suggestion of calling a college nursing program is a good start. You deserve to have a life, find a place for Dad so you can return to being a daughter.
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Reply to GrandmaC
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Hiring help can certainly be challenging. My experience didn't last long, as mom refused to let them in after less than 2 months. At the time, it was only 1 hr/day, to check on her, have them remind mom to take her meds from a timed locked dispenser if she hadn't taken them and just "be there." I didn't care what they did for the remainder of the hour, as this was mainly to get a sanity check and prepare mom for having others there - plan was to increase time and duties as needed, but she thwarted that!

My biggest issues were having different people sent on different days and ever changing time of day - not consistent. One woman was good - she would busy herself by cleaning the bathroom or sweeping mom's kitchen floor (of course mom would say it wasn't needed or would grab a dustpan and brush to "help" her!) I would have preferred this woman to come every day at the same time, but we didn't get that. I also wonder where mom's engagement ring and wedding band went. At some point I realized she was wearing some random ring I'd never seen before (she never wore other rings.) I have no proof, but suspect maybe someone "swapped" with her...

Although it would have been nice to let mom remain in her condo longer, it was not sustainable (because of her) and Plan B had to be used, even though her dementia wasn't quite that bad at that time.

Since he lives with you, in addition to having to be concerned about what kind of care he gets AND your own possessions, should you choose to take a vacation or return to work outside the home once help is established, it will likely take time to find the right people to accomplish this. For now, the best suggestion I can recommend is to seek out a place that offers respite. A week or 2 at a minimum, even if you just "vaca" at home. Six years is a long time to be tied to home, unless one enjoys being a homebody. It suits me, mostly, but I am not caring for anyone here other than my cats.

If you choose a good place, it might pan out that once you are comfortable with his care there for a week or two, maybe you could transition him to full time residence there. You can still visit and oversee his care, but have your own place to retire to after. Leave all the "heavy" work to the facility and resume a loving child who ensures he is well cared for.

Choosing a good place requires YOU to thoroughly check it out. Don't rely on reviews or brochures. Now that most are opening up again, check them yourself. Ask a lot of questions. Go at different times to see how others are cared for. Not all places are created equal, just like not all "care givers" are created equal. It is up to you to determine whether or not a place or person is up to the standards you prefer.

I would definitely start with having him go to respite care, to give yourselves a well deserved and needed break.
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Reply to disgustedtoo
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We've had success asking friends and using care.com. You might also try local churches.
Best wishes
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Reply to Chickie1
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We have had the best luck in asking all our friends if they know someone that does this type of work independently. This was not thrugh an agncy which takes a cut of the workers salary. Oh it is not easy though, so my heart goes out to you!
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Reply to Hatethis
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https://adrcoforegon.org/consite/explore-alzheimers-disease-and-related-dementias-caregiving.php

Call these people and talk it through.

I knew nothing of Astoria, Oregon, but thanks to dear Auntie Google I've found that it looks like the most amazing place to live, beautiful, rich in interesting history and new communities. I can quite understand the attraction.

But that doesn't mean you can't look further afield for solutions, don't forget.
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Reply to Countrymouse
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I found home healthcare workers. Background checks and driving records are available through the site. You pay a monthly “subscription” to access. Using a website over an agency will save money—you can pay a lower hourly rate (when you hire an agency, the agency often takes half).Once you hire someone, use an online “nanny” payroll service to process payment, take care of the bookkeeping and take care of withholding, etc.

Through the site you basically just post “help wanted.” After your bad experience, maybe it would be good to hire someone while you are there (so you can initially train and supervise) and if that goes well, once you are comfortable, hire the person for a weekend away to help relieve your burnout.

Once your new system is in place, cancel the service to avoid paying the subscription in perpetuity.

If it is not available in your area, contact a CNA program with a job posting for newly certified “graduates” or consider hiring a job placement firm. You can ask a placement firm to screen resumes, conduct initial interviews and process background checks. The upfront cost is lower than ongoing agency fees.

My parents cared for their own parents (with help). One grandparent had a CNA 8 hours, M-F, (my parents took the other 16 and weekends). For another grandparent, my parents hired 3 caretakers to work 8 hours each daily. With one appointed to be the supervisor of the others, my parents didn’t usually have to worry about scheduling or deal with as many problems. My parents were elderly themselves then snd could not handle the heavy lifting, but were able to have a lot of low stress, quality time with my grandparent.
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PatsyN Jun 27, 2021
Sounds great. Until you try to find help in rural areas. Our experience has been identical to the poster's. It's absolutely all we could find. We were days away from a nursing home when we found the small agency we use. Staff is adequate at best. Works for now, mostly because my mom doesn't need a lot. She's in a wheelchair from a stroke so it's the basics-though essential. Mostly she needs someone there close to 24/7. Which the aides are constantly "cheating" on. Getting there late, leaving early. Even though we've made it clear many times they're not to leave until they're relieved. Some other larger, regional agencies I checked with wouldn't/couldn't work with someone who wasn't "mobile." We've been dealing with this for a decade. Became critical in September when my dad died. COVID. An aide brought it into the house. Just needed that one beer at the local bar. Then there was the teen mom aide we were trying to help succeed despite all her "issues". We caught her stealing her first month on the job.
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We hired Visiting Angels to help with my dad. For the most part the caregivers were fine, a few not so much. Mom sent one home and told her not to come back, and one I asked not to return because she was a tiny lady not capable of handling my large father. You have to kiss a lot of frogs to find your prince!
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NeedHelpWithMom Jun 27, 2021
The opposite happened to us. Home health sent an aide that was so extremely obese that she couldn’t help my mom. She was absolutely no help as far as respite care for me. I ended up drying mom off after her shower, dressing mom and placing mom’s stockings for edema on because the caregiver would huff and puff so badly due to her extreme obesity. This woman couldn’t bend over at all! She could barely walk from my front door, down the all to my mom’s room without being out of breath.

It was awful. I was nervous having her bathe mom because she wasn’t steady on her feet.

When I asked for a replacement they told me that she passed the caregiver test. I told them to come see her in action and then they would see that I was doing most of her job for her. They eventually sent a replacement that was wonderful.

I am certainly not fat shaming anyone. It’s about being qualified to do a job. She was so incredibly obese that I still wonder how she drove her car. It seems like she would have never been able to fit behind a steering wheel. I suppose that she had the seat pushed back as far as it would go. She was tall so I guess that’s how she could still reach the pedals to drive. She looked like she weighed between 400 and 500 lbs! They must make special seatbelts for someone as large as this woman was. There is no way a normal size seatbelt would fit her. These are the people that have to buy two airline seats.
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I am a lucky one that found a great aid. I tried around 5 years ago when my mom came back home from hospital but it did not go well so I gave it up. She spent a couple of hours with me and my mom. Mom was having diarrhea mixed with blood but she said I was wrong. I called the doctor and it was blood. Mum was taken to the hospital with what seemed to me an intestinal ischemia. I was not ready to try someone else and mum just refused to have someone as she was almost independent. But when she fell last February after 2 weeks working at home and taking care of her who was completely bedridden I had to find someone as I had to go back to work.
The lady sent by an agency (I understand agencies are really organized in a different way here in Italyl is absolutely fabulous. She has years of experience, is sweet, takes mum out in her wheelchair, she cleans and irons... And doesn't mind our bunny living free in the house. Actually she is spoiling both mum and bunny. 😁
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My mom lives in a remote area that's nearly an hour from family and she loves living there. She's in her 80s, had polio as a very young child, and fears going to a nursing home of any kind. She's got bits of dementia and short-term memory issues but is otherwise very sharp. She's lost a lot of upper body strength and gets around on a scooter (no use of legs). I know she gets lonely and is also very strong-willed/obstinate and insistent that she doesn't need help, until she does.

I talk to her several times a week via video on an Alexa Show device and have cameras set up around the house so my brother and I can keep an eye out for problems. She also has an iPhone and an alert button.

When we were looking for help, I used care.com and found there were several possible helpers, even in her remote area. It was tough to get people to respond or that were available. I did end up finding someone (20 years experience) for a morning shift through someone else who had great reviews but was unavailable.

I found someone else when my friend in another state posted to a small business group from my mom's town on Facebook. My friend explained our basic needs and asked for interested parties to contact her. We found a very nice nurse who comes 1-2 hours a night and is seven minutes away.

My mom was resistant at first to have the people in her house but now looks forward to their company. She's still obstinate but it's a relief to know there are people helping her in person and that we can call someone nearby to come over in an emergency.

We pay $20-25 an hour which isn't cheap but it's lower than what we'd pay through an agency. The agencies we talked to have four hours at a time minimums which didn't fit our needs right now. There was also no guarantee of getting the same person consistently which wasn't ideal.
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NeedHelpWithMom Jun 25, 2021
That’s wonderful that you were able to find good caregivers! That’s a win, win situation, since your mom is happy to have the caregivers in her home.

My husband’s grandmother was a very stubborn woman who refused to go to a nursing home. This forced her only daughter, my sweet mother in law to hire private pay caregivers.

My in-laws paid more than the caregivers were expecting to be paid so they would stick around! My husband’s grandmother was not a nice person to be around and didn’t appreciate anything! Trust me, her caregivers deserved every dollar they earned! My in-laws also gave them items in the house that they admired after my husband’s grandmother died. They deserved extra!
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I've been an in-home caregiver for almost 25 years. A lot of those years were spent employed by a care agency until I wised up and went private duty only.
If you want a good and professional caregiver who knows how to do their job and is trustworthy, never use an agency. These places will hire pretty much anyone. They all claim their caregivers are well-trained. That they are always supervised and have access to great support staff from the agency. That everyone has a complete back round check and are trustworthy.

What a great steaming crock of something that is.

In all the years I was with agencies, I have never been "supervised" by a nurse one time. An agency tells its workers to call the agency in an emergency. They reassure clients and families that they will handle it. Really? That's an even bigger crock of something.
I can't tell you how many emergencies came up with clients of mine over the years. The only support the agency ever offered was leave a voice mail. Lucky for the clients in distress that I have EMT training and handled those emergencies. Granted, I wasn't supposed to. The protocol was to call the agency and a supervisor would handle it. Only if I had waited for some supervisor to listen to the voicemail and call back, the clients would have been dead.
Agency aides will follow the protocol no matter what. No one wants to lose their job or get in trouble. They also don't know how to respond in an emergency.
When you hire privately, you get people like me. People who you can really check out too. References from families that you can personally speak to. Sure, it will cost you. An experienced, skilled caregiver who will handle everything isn't working for cheap like agency help.
If you can afford to pay for private care, I suggest you do. Go on and look at profiles. Then just start talking to possible hires. You can negotiate the pay with them too.
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Reply to BurntCaregiver
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Slartabart Jun 26, 2021
Integrity seems difficult to find sometimes, particularly when pay is an unlivable wage. For such an important, diversely demanding job, caregivers are often grossly underpaid.
Burnt, could you name a reasonable range of hourly pay for an experienced caregiver (private, non-agency, non-nursing)? I know it depends on what part of the country, the level of skills, etc. but a guideline would be very appreciated.
Also, is a minimum # of hours per visit typical (2 or 4 or…)? . This info might be of interest to the OP, as well. Thanks.
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It’s a mixed bag! Some workers are excellent and others leave a lot to be desired. Have you tried hiring privately? Of course, you would need to do a background check and check references.

Otherwise, I would bypass an at home caregiver and move your dad into a facility, either an assisted living facility or a skilled nursing facility. Then you can relax knowing that your dad is being cared for 24/7.

You can be his advocate and visit as often as you like. You and your husband deserve a break from full time caregiving.

Wishing you and your family all the best!!
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Reply to NeedHelpWithMom
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When I used an agency the caregivers I got were good.
As my Husband declined the last 2 caregivers I hired were AWESOME. I contacted the local Community College and spoke to the director of the Nursing program. I explained I wanted to hire caregivers. The CNA program had concluded and I ended up hiring 2 that were waiting for the next semester of Nursing School to begin.
They were great. Caring. Attentive. And I am sure they appreciated “easy” one on one work rather than getting a job at a facility. Not to mention the hours were good, start at 9 AM and they were done by 4 PM.
Since I hired them privately there was paperwork but it was through a program the VA had so I had minimal paperwork and I know it was done properly.
So check your local Community College
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Reply to Grandma1954
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MHHE1967 Jun 26, 2021
Great information! When hiring privately, are you responsible for withholding taxes and social security for the caregiver?
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The agency you used is only as good as the person they send over! If they send over a caregiver who's saddled with issues, call them up immediately and ask for a replacement. Make your wishes known up front, that you're looking for someone with experience and maturity who won't bring personal problems to the job.

If your father doesn't want the caregiver around, sorry dad, I need a break so the CG is staying. You have needs that are very important as well here, try not to forget that. If the agency sends you a CG, be sure to let that person know what you expect in terms of care, but don't expect perfection. Do expect a break from your duties as a carer. If the person is being paid, then he or she is expected to perform certain duties as outlined by you. Discussing personal problems is not on the list!

Your other option is to send your father off to an Assisted Living Facility for respite care, even if it's far away. You'll have a couple of weeks off and that's what you need after 6 years and major burnout.

Wishing you the best of luck moving forward with hiring some help or getting respite.
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Reply to lealonnie1
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babziellia Jun 27, 2021
I agree. If the caregiver they send isn't working, call them up and tell them to send someone else.
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