My husband has advanced dementia and his needs are becoming too overwhelming for me to deal with alone. I am thinking of hiring a live-in caregiver, but I don’t know how to proceed. What are some of the things I need to consider, besides a bedroom and cost?

Even with a Live in caregiver you will still need another to come in. A person can not work 24/7/365
Typically the hours would be 7 or 8 hour day, time for lunch and a 4 to 5 day work week.
It would be so much better to hire 2 or 3 caregivers so that shifts can be done covering the full 24 hours.
If you do not need someone to tend wounds a "caregiver" is what you need. If there are wounds to tend any agency would require you to pay for a Nurse.
If your husband can not pick up medication and take it himself again a Nurse would have to be in place to administer medications. (unless you can do both give medication and tend to any wounds)
If you hire privately you can instruct a caregiver to give medication since you are the employee (at least that is the way it is in Illinois)
And if your husband does not need much looking after at night you might be able to get by with just 2 shifts. (once I got my Husband into bed he did not get out of bed until I got him up in the morning. I did change him but that was done in bed pretty easily)

AND just as "we" get caregiver burnout so do paid caregivers so working 24/7 is not a great plan.
Helpful Answer (2)
Reply to Grandma1954

Imho, I do NOT suggest a live-in caregiver. Proceed with a caregiver who can come into the home for hours dictated by you.
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Reply to Llamalover47

I just want to say that when my grandpa had a heart attack (he was the only caregiver for my grandmother with advanced dementia), I stayed with grandma for the 2 weeks my grandpa was in the hospital. It's incredibly taxing being the only caregiver. But once my grandpa was released, we went through an agency and hired a caregiver for 6 hours a day to help my grandpa with the caregiving duties. It's expensive, but they could afford it. That lasted about 8 weeks until he was back to his normal. A few months later, we lost grandpa, but I couldn't move in and be a full-time caregiver for grandma and also work full-time so I moved grandma to an assisted living facility nearby. The live-in, or any outside paid help, is a good option if you are able to manage it, but what's your quality of life? I now get to spend quality time with my grandma without the heartache of caregiving and all that entails. It's just something to consider and it was a heartbreaking decision, but my family and my grandparent's friends support me and we all know that she's safe.
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Reply to Juliasmygma

With the problems involved, are you SURE YOU WANT AN ADDITIONAL PERSON, A CARETAKER, LIVING IN YOUR HOME. Don't you already have enough problems with your husband? Now adding someone into the mix in your home will affect your way of life and privacy just by the fact they are there in your home. How do you know you will be compatible? I would by a great measure rather place him in a facility where he can be cared for and you can live the life you deserve - he is gone.
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Reply to Riley2166

You become their legal employer known as a "nanny tax" and must file their income taxes. If you see a tax specialist or tax lawyer they can set up your name as a "corporation" for added tax deductions. If after a certain time you dismiss your hired caregiver they can sue you for unemployment compensation. Further, if they claim to get injured in your house they can sue your estate. I hope you all are well off financially. They do not come cheap...and I don't know what minimum-wage laws are where you live. US news provides minimum wage laws...but still I would ask the tax lawyer about this. You can get in very serious trouble if you pay below minimum wage by the wage-and-board commission!

There are variations of the law based on your state, but here is a basic website on nanny taxes

Now you can see why the "$15 an hour minimum wage law" will cause a lot of unemployment. If you are the employer this will really hurt you.
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Reply to cetude

Consult a local lawyer to find out legalities of hiring an employee who will live in your home. You may have to pay taxes and give W2. You may have to upgrade your home insurance or include the person in your health insurance.

My MIL lives in Hawaii without family (her choice) and has a live-in caregiver. Prior to COVID, she attended an Adult Day Program (many are available in nursing homes or personal care homes) Monday through Friday during the day. She had a caregiver that takes care of her at night. With COVID, she has 2 caregivers that provide 24/7 care for her in her own home,
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Reply to Taarna

Check on line and start interviewing.

The live in has to have their own bedroom and bathroom to use and their food provided.
They also have to be guaranteed 8 hrs of sleep a night.

As far as time off, most want one day a week (24 hrs) from morning to morning.
The Least Expensive I found was $500 a week and that was 2 yrs ago in Texas.

This is so much better Cost Wise then $12 and up an hr.

Tho, Keep in mind you'll have someone living in your home 24 7 so you lose your privacy and you're still the one that has to get up at night after midnight because legally they get 8 hrs to sleep so they'll be off the clock midnight to 8 AM.

You might start with just part time hours of times you need most like 8 AM to 8 PM and find people who will start for $10 an hr

You should hire at least two Caregivers.

One for 5 days a week and one for weekends or 4 days days and 3 days, just in case one can't show maybe the other one can fill in.

Helpful Answer (4)
Reply to bevthegreat
Sarah3 Jun 8, 2021
I’m sorry that’s a really bad idea to try to lowball what your loved ones caregiver is paid— why do some people seem to think this is a perfectly good common sense idea to pay a wage that is so low it’s less than what a 15 year old kid starting out in fast food would make??
Good advice here, especially about considering a facility. I struggled with what to do for my Mom, who was diagnosed with Alzheimer's with delusions last fall and the doctor looked me right in the eye, and said: "Your Mom cannot go home; she needs 24/7 care." I considered 24/7 in-home care, but the cost was more than a facility. After much research, we found a wonderful Memory Care unit at a nearby facility. They take amazing care of my Mom, and it is a relief that she's safe and well cared for by a well-trained staff. There are many activities she can participate in, and the meals are healthy and delicious. We visit her there at her large studio apartment and take her out for visits at our home and for family dinners.
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Reply to pattiac

HI... I have done live-ins for years and will do my best to answer your question.

1. Own room
2. Right now, for a 24 hour shift, we get paid for 16 hours and the family was told that we are not to be disturbed during those other 8 hours. That is our sleep time. Now... that being said, the patient does wake us up..... sometimes because she thinks something is not working right. Yes... we get up and "fix it" and when she does wake us up, we fill out a special form indicating the time we were up and we get paid extra for that.
3. You are to provide meals to your live-in caregivers. In other words, they cannot be expected to bring their food with them. Some do anyway like right now. Their food is so bad... even their children refuse to eat it.
You are NOT expected to provide ---- candy, soda, juice or expensive items
for meals. I have seen some aides who get the families to pay for things that
they themselves never buy! Aides are not to do this. Do not allow it. If an aide
makes these ridiculous requests, I would advise you to call their office and tell
them you want a different aide.

I had one family, they insisted on paying for things they were not obligated to.
But they clearly could afford it. Aides are NOT to take advantage.

4. Aides are NOT housekeepers. They are there to take care of the patient(s). Their caregiving does involve some cleaning, of course, but not whole house cleaning. They do what is called "light housekeeping". This means in the case of your husband; your husband takes a shower, she may help him with taking a shower;, the aide cleans up the shower and takes care of whatever he used to take that shower. He uses some sort of commode, she keeps that cleaned up. Keep his bathroom clean, organized and well as where he sits. The aide helps him get dressed and does laundry from start to finish. She fixes meals --- wipes down counters, stove microwave afterwards, sweeps, mops kitchen, washes, rinses, dries and puts away dishes. (you may want her to use dishwasher) He may feed himself or she may feed him. She may shave him or help with him shaving himself. She may brush his teeth if he cannot. Help him with morning routine and nighttime routine. Help with the supplies he uses... shaving cream, toothpaste, depends, gloves, underpads,... etc. remind you when low.

OK.. here is something that needs to be stated---- we do medication reminders. REMINDERS ONLY. Aides do NOT take pills out of bottles. They do NOT draw up medications in syringes. Aides are ONLY allowed to REMIND the patient when they are to take their medications. We do NOT dispense medications. We are NOT nurses. Let's say, he has a headache and wants a tylenol. The aide CANNOT give it to him. It is in a bottle and since in a bottle, they are NOT allowed to take medications out of bottles. All medications have to be in what are called, "pill planners" or one of those machines. They are marked something like this --- morning, noon, evening, night. And there are pills in these planners. The aide is to tell the patient.. remind the patient,, "It is morning... it is time for your morning medications. Or... it is noon... time for your noon medications.. or.. it is evening.. time for your evening medications..." and so on.

I have a patient right now that she tries all the time to get me to give her her "extra" blood pressure pill. It is NOT in the pill planner. It is in the bottle.. I do NOT give it. Either I or my patient will ask her hubby to give it to her and he does. She has told me so many times, "well, the others always give it to me when I need it". And patients and their families lie all the time, too. I have repeatedly reminded this patient that if the state finds out that these aides are dispensing medications, (that is if they really are) they could lose their certification. She does not care. I remind her that this is their livelihood. They have families. She still could care less.

I hope this has helped you. God bless.
Helpful Answer (9)
Reply to DonnaF777
Jada824 Jun 9, 2021
Not all live ins are caregivers. Some are just hired for the convenience of saying someone is living with the elder full time so the person in charge doesn’t have to spend time with them.

The one who lives at my Mom’s doesn’t even know how to walk an elder up the stairs properly.

You stated that some have been living in the elder’s home for so long that it’s like their home. That should never be the case! They should have a plan on where they’re going to go when their help is no longer needed.

Some people are not qualified in my opinion and anyone thinking of having a live in should do a background check and the person should be licensed, bonded & insured.
I am with JoAnn on this one. I would not have a live in caregiver. The cost alone would be enough deterrent for me. Why not consider a facility? Research nearby facilities and find the most suitable place for your husband.

What happens if a private caregiver isn’t able to be there? Then you are stuck without a caregiver. In a facility there will always be professional staff available to care for your husband.

You can go visit as often as you like and go home and rest. Plus, one caregiver will not be able to do everything. One caregiver isn’t enough. My husband’s grandmother refused to go into a nursing home or assisted living facility, so my mother in law had to hire private caregivers. She had two caregivers to care for her mom. It was super expensive and fortunately my husband’s grandmother could afford it.
Helpful Answer (6)
Reply to NeedHelpWithMom
DonnaF777 Jun 7, 2021
She is right. One person even with hired help ... too much to do all the time. You cannot depend on those caregivers. I know... because I am a caregiver and I get called all the time to "fill in" for someone who has called in. It used to not be this way but... it is horrible now. You cannot depend on people.. on these caregivers. Many do not have transportation! Again,, one kept calling in--she does not have a car and then they would want me to take her shift. Another was taking Uber to and from work everyday and was hoping I would teach her how to drive! She is from Africa. I tried... it was a nightmare!

Staying in the home is NOT what it's cracked up to be. They normally have no one visiting. No one. Just us, the caregiver. No social life to speak of... nothing going on.................oh...........except the TV. They get bored... depressed.... no one around to talk to except us and that is not good. No activities to keep the entertained. In these facilities, there are things going on all the time. They go to meals and socialize with others. 3 times a day! Someone else to have to deal with the medications, fixing meals and there are people always around to check up on you... asking about you.
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After being on this forum for several years, I would never have a live-in. You can check with your labor board on the laws in your State but I would think basically that all State laws are the same.

1. CNA's are not self employed. You are their employer and as such are responsible for deducting taxes and SS from their wages and you must match the SS deduction.

2. You just pay them minimum wage. You cannot deduct room and board from their wages. The aide works 40 hrs a week. Overtime is time and half.

3. You need a well written contract. I would use a lawyer. This contract should stipulate that you can let the aide go at anytime. At the time the client is placed in LTC or passes, the aides services are no longer required. All this means is the aide has to have a back up plan when entering into the contract. Must have a place to go to when services are no longer needed.

There are stories on this forum where live-ins will not leave. We have had posts from live-ins where the client has died or been placed into a facility and are being asked to leave and have no idea where they will go.

If its getting overwhelming for you may be time to place your husband in an Assisted Living or in Longterm Care. Medicaid allows for assets to be split with your DHs split being spent down and then applying for Medicaid. You will be able to remain in the home, have a car and have enough of your monthly income to live on. You will need a lawyer well versed in Medicaid law to help set this up.
Helpful Answer (6)
Reply to JoAnn29
Jada824 Jun 6, 2021
My brother who has POA had someone move in with my mom. My mother has been in a nursing home for almost 6 mos now & is not coming home.

The live in is still living in her home with all the bills still in my mom’s name and I don’t believe she’s paying any rent.

Doesn’t look as though she has any intention of leaving since brother put ac in the window for her yesterday and she has no where to move to since she got evicted from her last residence.

I’m with the others on this not have a live in.
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Thanks for the advice, Grandma1954. Good point about hiring someone from 7am-1pm and another from 2pm-10pm. I will try that because it is difficult to find someone to work the evening shift for only a few hours. Hopefully, chances are better with longer hours.
Helpful Answer (1)
Reply to Worriedspouse

Ok, it's me again...
Have you contacted Hospice to determine if he is eligible for all the wonderful services they can offer?
You will get all the equipment that you need to safely care for him. You will get supplies as well. A CNA will come a few times a week to bathe him, dress him and order supplies. Change the bed. A nurse will check weekly. You will have a Social Worker as well as other resources. And a Volunteer can come and sit with him while you get out for a bit.
Now is your husband a Veteran? If so check with the local Veterans Assistance Commission to determine what help you can get from the VA. It would be a LOT or a little. And in many cases depending on where and when he served you may be able to be paid for caring for him.
As for the live you really need a live in? do you really need someone all night?
A better plan might be someone in at 7 am to get him up and showered, dressed. And all the care that is needed during the day, they leave at 1 or 2 and another caregiver comes in from 2 to 10 pm.
Oh, unless there are medications involved or wounds that need to be cared for you do not need a CNA or a Nurse a caregiver would be all that you need. The cost increases if you need a CNA or Nurse. (If he can pick up pills and take them himself that is ok, if someone has to physically give them to him you would need a nurse, or hire privately. hire privately you can instruct your employee to do what you want them to do)

I would go through an agency so you do not have to deal with the paperwork involved, the taxes and all the rest of the legal stuff. (background checks, insurance, Social Security...) I'm sure others will give you a detailed list of what needs to be done.
Helpful Answer (4)
Reply to Grandma1954
DonnaF777 Jun 7, 2021
You can get one of those machines or even a pill planner and if you don't want to do this or cannot, hire a nurse to come out to fill those.

Find out the difference in cost between live-in and for those hours of 7 am - 1 pm... then 2 pm - 10 pm. What times does he get up in the morning and what time does he go to bed at night? I had some patients that stayed in bed late in the morning and did not get up until 10am so I did not show up until then. They went to bed at 8 pm. You might could do, two 6 hour shifts. Maybe 12 hours a day is not enough. You don't have to do the same hours every day. Just depends on what your and his needs are each day. I would try at least 4 hours at a time. Most aides don't want to take anything less than 4 hours especially if they have to drive a long way. Aides do NOT get paid mileage. They get no vacation pay.. no paid time off..,, no benefits and they make about $10 per hour. There are no raises. And they are treated badly by agencies and their clients and families. I am asking you... you get a good one, treat her with respect... kindness. Don't make her eat in the kitchen while you eat in the dining room. They are human. They have feelings. That is all I am asking. Thanks for listening. Hugs. Hope this helps.
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