What is the reality of having full-time care in the home?

You will get some good answers. Hang tight. Those who have dealt with, will chime in.

24/7 n home expect 10-12k a month from an agency. Private could be less but you would need to setup mom as an employer, paying for workmen's comp, social security, withhold taxes and all the responsibility that goes along with that. And room and board for a live-in is not considered part of payment.

Of four dear relatives who required full time supervision and care, two did well at home with 24/7 care and two did not.

Two considerations that arose immediately in our decision making were the suitability of the home settings and the reliability of the caregivers available.

One of the homes was a ranch ranch with two easily accessible, adaptable baths.
Two of the other homes were bungalows with no first floor bath. One of those had a complex stairway arrangement and single bath.

When reality hit, the house with the tricky bathroom proved unsuitable (at different times) for both family members. One entered a residential hospice and the other is now in AL.

The relative in the ranch was able to remain at home for several months, with an excellent caregiver who worked with a second excellent caregiver who was a personal friend. Over the course of time during their service, there were no lapses in care coverage.

The care arrangements for the house with the the upstairs bathroom were much more haphazard because the agency was often unable to provide coverage for the full time aide’s time off. That meant that for a period of several months, it was family who were on call 24/7.

We came to the conclusion that it was a good idea to develop a selection of options for care, then when possible offer trial runs. Not by any means a perfect solution, but the “perfect solution” when dealing with elder care became the exception and not the rule in dealing with our family experiences.

There's a HUGE difference between "some" in home care and 24/7 in home care. Where is your mom really on this spectrum? Does she need someone to come into the home to help her bathe and dress, manage medications, meal prep and housework? Or does your mother have the type of mobility or cognitive issues where she needs someone in the house with her all the time? Can your mother call for help if she needs it using a phone or a life alert type button?

If your mother needs someone to come into the home and help with medication management, meal prep and housework due to her vision problems, then in home care is probably manageable. Please contact your Area Counsel on Aging and find out what programs are available that may assist your mother - some of them may be free.

From Dibbern.com www.dibbern.com/home-health-care-costs/cost-for-california-home-health-care.htm
"If you or a family member needs home health care, and you live in California, plan on it costing about $22 per hour. That's the average cost in the state for a Health Aide, according to a survey published by the MetLife Mature Market Institute*. The yearly cost of $22,880 is based on an estimate of 4 hours per day, 5 days per week."

Has anyone ever done this (24/7 care)?
Yes, I was a caregiver for an elderly man for over a year, (along with other c/g's). His wife paid over $100,000 for his 24/7 care. He wanted to stay at home too and, since they had the funds, he got what he wanted. This is a very expensive way to go. In the end, he was unable to stand or walk on his own and, at the very end, he could no longer reposition himself in the bed. I went off on back strain 3 times, until I had to quit the job altogether. He died 2 weeks later.

It worked because they had a single level home and, at times, they were also doing hospice (no nursing care). We gave him bed baths, he used a urinal and we would assist him up to the bedside commode. We transferred him into a wheelchair and rolled him out to the kitchen for breakfast and lunch.

The problem is when a caregiver is sick (or any other reason to call out sick). Often the home care agency can't find a replacement (no guarantee is offered for care). It then reverts back to the family. Are you prepared for that? If you are not physically able, is there another family member that can do a shift with your mom? It is not a RELIABLE mode of care for her. I was only out when I threw my back out but the other c/g's would call off for lame reasons and there's nothing you can do.

I'd say, if you're going that route with your mom, definitely have a few people as backup.

I stepped into the care of the aging community about two years ago. (After working in the corporate side of business in marketing & sales). In six months I worked and educated myself in care in private, facility, and care-giving companies. After my experience in working for three different care-giving companies I will NEVER put anyone I love in the care of these companies.

Speaking to the cost. Caregivers are paid just above the minimum wage from the companies they work for with very little training. I was trained by DHS which has continuing education and required certifications. While the caregiver is making above minimum wage, you will be paying the company providing the caregiver $30-$45.00 per hour. In addition your loved one will not receive the same caregiver and turn-over is high. Thus the consistency of care will change and if there are problems in the home it is difficult to nail down who or how when you have 2-4 different caregivers in your home. Training is basically watching YouTube videos which I experiences in the two of the companies I worked for. Which then signed off on "trained professionals".

I highly suggest you find a private care individual who can commit to the kind of individualized care your mother will need. Sometimes it takes having a few different people before you find the right one. Having employed house help and in home child care for my children, I see this as no different. Respectfully you are putting the trust of a loved one in the care of a stranger.

Those clients whom I have either worked with, worked for or helped find care have had the same individuals for many years. Although I have been working formerly in the elderly care industry for only two years, it has been my passion for many years in volunteering, and assisting with families to find the kind of help needed.

Work alongside your mom with the kind of schedule she would keep with a caregiver, the specific needs ( personal care, house help, errands) and then help her make a service plan, schedule, and cost break down before your first interview. You will also get better serivce and more of what your mother will need with private care as agencies who provide care givers will outline services, write out a care plan and the cost will be based on need. Be assured if you go the route of an agency and your mother needs help with incidentals outside of the written plan by an agency, there will be added costs.

With private care, those incidentals become part of the care and statements in a contract allow for the incidentals that come up. Here is an example...

Let's say your mother has spilled the milk in the frig. If "cleaning a refrigerator" is not listed on the care-plan from an agency most caregivers will not clean it up. I worked in a home briefly where I actually got in trouble for emptying the garbage. The client called the agency to thank them for sending me. She also said that she was grateful I had emptied her garbage. My job was to just "sit with her" while she healed from back surgery to see that she did not fall. The house had a foul smell and I tracked it down to the garbage, which she was not able to empty, thus I did it for her.

All to say that you can go on craiglist and look at the job qualifiations for caregivers. There are 100's of positions listed by a number of agencies. Most will say, "no experience necessary. "

My five children now promise to never place me in a facility or hire a caregiver when that time comes for me. I now work in a private home, and still maintain assisting with clients on an as needed basis. I hope this helps a little.

My brother in law died last weekend after receiving 24/7 in home care from an agency for the last two months, while he was bed-bound. My sister is in a wheelchair and was unable to provide his physical care, apart from actually administering medications (which only the RNs were able to do, not the carers). Usually the night carer had to be an RN for that reason. The carers were great and the agency was reliable and really good. I visited often, and it was like being in an institution, with three shifts of carers (double number during three handovers a day) very present all through the house. Often the carers were doing nothing, but they still had to be there and be paid. It was staggeringly expensive, but they could afford it. Shopping, transport to appointments for my sister, and some cooking, had to be done by other people, paid or unpaid. For most people (including me and my own husband) it would not have been possible either physically in our house or financially. If you are looking at an even longer period of time, it doesn’t sound possible from what you say.

My first husband died last June with his last couple of months in a private room in an excellent nursing home. They provided round the clock physical care, and family visited extensively, including all night at the end of life. It worked well.

My suggestion would be to do a lot of detailed research about who would do what and how much it would cost. Write out pros and cons for each option, including facilities, separately, and talk them through with your mother. Most people would prefer to stay at home, but ‘it takes a village’ and hiring a village to care for one person is rarely workable. Good luck.

My mother had 24/7 care in her home for exactly three years. She was just moved to the nursing home because her money to fund this care is exhausted. She had excellent care from women who we’re not even CNA’s.

If you decide to hire individual caregivers you can use a payroll agency that will charge you a fee but they do all the work and can actually offer benefits to your caregivers. Do the math and get quotes for workers compensation insurance, we pay a minimum annual charge whether we have employees or not. We had 1,200.00 in payroll and our workers comp minimum was 1,500.00. Imagine our surprise. Then there are the qrtly and annual reports that you are required to file. It is easy if you know what you are doing, otherwise it is usually worth the fee you pay.

Please know what you are doing and what is required when you are making the decision on how to pay the caregivers. It will save you serious headaches.

Recently we started paying two aides $600 a week *each* for my FIL who now needs help from the time he wakes up until he goes to sleep. That's $62,400 a year *before* taxes.

If (when) we need to add a nightshift, that would be $1800 a week and $93,600 a year before taxes.

My FIL lives in independent living and his rent covers big expenses such as meals, all utilities, and housekeeping. Indy living already costs a fortune and the additional cost of his aides is burning through his savings at an eye-watering pace.

The other reality of having full time care in the home is when one of the aides cannot be there for any reason. Things come up. People have lives. People get sick. People have family emergencies. Someone has to scramble and find someone to fill the gap or take the day off work and do it.

Has anyone dealt with the new tax consequences of this expense yet?
Were they deductible? All of them? Some of them?

I think the new tax law is going to have some real surprises in this area.

Check IRS rules on caregivers. One of the rules is if the job has to be done in the home then they are an employee.

https://www.irs.gov/taxtopics/tc756

Maybe I am not an employee since my employer does not tell me when to use a pen or a pencil or when and how to look something up on the internet?

Caregivers in the home are employees if not working for an agency. Take that a step further, an agency does not tell caregivers how to change a diaper, they train them, then they are on their own and still employees of the agency.

Hopefully private in home caregivers are provided some level of training.

IF THE HOME CAN ACCOMMODATE: Go thru an online service like <Silvernest. con> and see if you can find someone who’d be willing to live on the premises in exchange for help. I have this and it’s a win/win for us both. My needs are presently only for some assistance with shopping, laundry and bed making & the like. And she does some cooking. When hardcore nursing is needed, check with the health plan, social services. Meanwhile, the live-in help can be a good solution. Monitor it, of course, be sure to get some b’gnd checks on the person. My philosophy (based on my own experience): see that basic needs are met, visit or call when you can and LIVE YOUR LIFE!

Sounds like you have your hands full with your mom.
In certain states your able to take your mom to the doctor. They in turn make the decision that she needs Homecare. Then once a Homecare is set to come in there is certain things your mom my need to do to qualify for help. Meaning if she has money certain states don’t allow people with a lot of assets to quality for help. That being said she may have to pay until she cannot pay anymore or have her assets transferred to someone else in order for her to qualify for help. Once this is done she will have someone come into her home take a bunch of information then they take it back to the office and determine the amount of hours she’s allotted for. If she has money and doesn’t want to transfer it into someone else name she may have to pay for a private duty aide. They are going to be very expensive and depending on how much money your mom has it’s gone to go fast.
You need to talk to your mom about this. It’s difficult to do but if your mom is asking for someone you really need to get her the help she needs. She will probably feel much better knowing someone is there for her. She may have some underlying problems that you are unaware of.
First start with the doctor find out if she qualifies for Homecare hours. If she does then you will have to have the talk with her about her financial situation. Go from there.
I had to do this with my mom. It was exactly the same thing. I don’t know where you live. Sometimes it can be hard to get things going. Once she’s in the system though it works really well.
Good luck.Be patient get your mom’s affaires in order then the help should start with her. It takes a few steps but it’s really worth it once it’s done. I had Homecare for my mom. I had to do exactly what I told you with her affairs first. Actually this is what we where told to do by the someone ( a friend) that knew how to get help. I just did what he said and it worked. My mom had the help she needed until the end.
Good luck.

Have you considered an Assisted Living community instead? In addition receiving the care she needs your mother would also have socialization. Having her meals with other residents, participating in programs and activities, etc.

Home care can be iffy. As others have mentioned you need to be prepared to scramble when someone calls in at the last minute. To me the management of multiple home care staff would be very stressful.

I am a Caregiver. Two clients I work with have 24 hour care. You actually gain on Mothers care 24 hours a day. Someone is with her at all times. Literally anything she needs someone is there for her. In a care center they are left to fend for them selves hours at a time. The fall risk is so much greater. i have worked in both types of this care and I would chose Home Care in a Heart Beat.

Dying in your home with all your treasures around you is very peaceful. Warm feeling of your life ending is so much easier. This is also easier on the family and friends. When you look at a care center, it can be very cold & frightening. When remove the elderly from the comforts of home it brings death very quickly. They seem to give up the fight.

Cost wise is also something to consider. Care units are very expensive. If the saving of funds is not there to support the cost... A very low end care unit is were she will be. I must be brutally honest, I would keep a loved one home before I ever placed them there. We as a country are headed into a huge health care crisis. Worse then it all ready is, especially for seniors. Many Health Insurance Companies are starting to recognize the cost for care units and helping to pay for in home care.

This is never an easy thing to deal with. I wish you all the best as my heart goes out to you. God Bless

I have read recently that quality in home 24 hr care ends up being more expensive than assisted living costs. Probably depends on location.

We have tried both in-home care (24/7) and Assisted Living. We started with a relative who lived with Mom for a month and then had a former neighbor live with her for the next month. We paid them and provided R & B. Since this was the first time someone was at the house all the time, it was an eye opener. I mention this so you might be prepared if the same thing happens to you. We learned that there were things going on that we would not have known otherwise even though I was at the house multiple times during the week. It became clear very quickly that Mom could not live on her own. Positives for this type of arrangement: there were eyes on the situation all the time and help for all the things Mom needed including med management, she could stay in her home, and it was much more affordable than going through an agency. The downside was that I remained on-call 24/7 and it was very stressful on the caregivers so it only lasted two months. We then went with an agency for 12 hours a day and my brother stayed overnight. Positives were the same as having someone living there and Mom made new "friends". Negatives were the cost ($120,000/yr for 12 hrs per day), no coverage when someone called off and I was still on call 24/7. Then we tried Assisted Living which was much more affordable ($65,000/yr). Mom passed the assessment and moved into an apartment at the beginning of the year. She did not want to be there and fought it every day. After three weeks, she fell and has been in rehab since. We are now finding out that AL was not an appropriate level of care for her and she probably needs Memory Care. This was based on another, more detailed assessment, of her cognitive function. So if you also decide to try an alternative living arrangement, please be sure your Mom will be placed appropriately and you won't have to move her more than once.

After trying out all these different options, we feel Mom is safest in a controlled living environment with 24/7 staff available. I wouldn't say she's "thriving" in rehab but she is more engaged and like herself. She likes that there are people around all the time and she can get help if she needs it. She still wants to go home, though, but would quickly run out of money and end up at a facility eventually anyway. At that point, she may not be able to make friends and it would be even harder on her. It's an awful, gut wrenching decision to make and I feel for you being in this position. I hope you are able to find a good solution for you both and possibly find some comfort in knowing that you are not alone!

Round the clock care would require placing your Mom somewhere. She needs to know this. Take her to facilities in your area and let her see for herself how being in an assisted living or nursing home may help her. Then remind her that if she does do round the clock care, the most efficient way would be in a facility. The sad reality is when her money runs out, so does the home health care. Good luck.

I had help come in when I was caring for my Husband.
I had someone in at 9 am and they were here until 4.
But I got my husband up, got him into the shower, dressed and breakfast before 9 and I got dinner ready and got him into bed.
When he became less mobile I used/ we used a Sit-to-Stand to help change him then later a Hoyer lift.
The equipment I got was the only way I could have done what I did. I have the VA and Hospice to thank for equipment and supplies but I also have to thank my sweet Husband that made caring for him so easy!

As much as you mom digs in her heels is she fully aware of your limitations? Does she know that you can not take care of all of her needs?
The best case scenario is to find a place now (one that will later accept medicaid), a place that she will be comfortable (happy?) and move in while she can make adjustments. If funds begin to run low the application for medicaid will possibly take a while but most places will keep a resident that has been private pay when they have to apply for medicaid.
I think if you compare costs of a live in or 24/7 care an Assisted Living would be less expensive and she would have the ability to contact someone for help. Obviously the more help she needs the cost will increase.

Ideally, we all want to stay in our homes until the very end, but at some point that's just not an option due to finances, physical limitations and the ability/willingness for family members to step in when a paid caregivers call off. It becomes dangerous for the loved one. We're outside Chicago, in Northwest Indiana and the costs for 24/7 in-home care is about $500/day for someone at $20/hour, which is pretty much the minimum. This is not skilled care, just a companion, maybe a CNA. That's on top of the regular household expenses - utilities, food, etc. Plus the loved one still needs to keep up with doctor appointments, errands, etc. Unless you're a millionaire, it just becomes too expensive, time consuming and an enormous mound of paperwork. There are residential homes where there are 5-6 elderly together. The ones I looked at were very good, but not suitable for my mom as she is totally immobile, has severe dementia, numerous health issues. I opted for a very nice facility - assisted living first, now in the nursing home section. Be sure they have medicaid beds when the time comes as whatever savings your loved one diminishes so fast it'll make your head spin. Every situation is different. My advice is to go with your gut. There are no easy decisions.

When my mom was alive, she did not want to be in a nursing home as her dad was. I stayed and took care of her part-time and hired someone to come in and sit with her, getting her something to eat and just providing help when she needed to go to the bathroom or get up. My dad still still lived in the house but was unable to help her get up or change clothes. The help releaved me and took pressure off.
We just hired individuals. I did interviews and background checks.

Best of luck to you.

We tried it but just couldn't keep reliable help. And, it cost $240 a day! It was very wearing on the family. She subsequently moved into an ALF and was very happy there.

I have. And do right now. I moved in with my mom and would do some of the overnight care. She's on hospice now...so we have 24 hour care. Two 12 hour shifts per day. Three 8-hour shifts is too much going on. If you can afford it, it's great. They help her, change her pull-ups, move her from bed into a wheelchair so she eats all her meals with me in the kitchen. Hospice comes whenever we need them to handle any medical issues. Hospice is free, part of medicare. They come and do baths 3x a week, RN whenever I want. They give you a hospital bed, oxygen...whatever you need...pull-ups wipes, lotion. If she was at memory care in a mixed living establishment ($7000 per month), she would still need some extra caregivers ($3000 per month). If you can find 2-3 caregivers to pay privately, it would be much cheaper. It's expensive. But it's a nice luxury. She's at home and happy. I can eat with her and watch TV and sleep next to her if I want (she has the hospital bed right next to her old bed.

Why put them in asst living or memory care? Ask them what if I get sick or die & you are home? Remember 70% of caregivers get sick or die befor person they are carrying for. I have seen it happen twice & then kids say I don’t know how dad did it caring for mom.

From Nextavenue.org;
Caring for a family member often takes a tremendous toll on the health and well-being of the caregiver. Research bears out that many caregivers neglect their own health while caring for their loved one. It fact, studies show that caregivers are at a much higher risk than others for diabetes, depression, stroke and other illnesses.

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.
—————————
Barron, Rosenberg, Mayoras and Mayoras P.C./ September 15, 2014;
70% of All Caregivers Over the Age of 70 Die First. (Before the people that they are taking care of.)

https://www.irs.gov/pub/irs-pdf/p1779.pdf

https://www.irs.gov/newsroom/understanding-employee-vs-contractor-designation

http://www.myhomepay.com/Answers/1099-and-Nanny-Tax

Each year, families across the country illegally classify their worker by providing a Form 1099 (Form 1099 is used to report money paid to an independent contractor). The IRS has ruled that - with few exceptions, such as some medical caregivers - household workers are employees of the family for whom they work. Attempting to classify them as an independent contractor by giving them a Form 1099 is considered tax evasion and does not absolve them of their household employer tax and legal obligations.

Of all the mistakes and problems we see, this one is always at or near the top of the list. The confusion stems from the IRS 20-point test to determine worker status. Many of the questions are ambiguous and/or subjective. Worse, a worker may appear to be an independent contractor on some of the questions and an employee on others. Which answers prevail?

Employee. If even one of the 20 answers points toward employee, she’s an employee. To save you the trouble of the test, the IRS has ruled in almost all cases that household workers should be classified as employees. Therefore, the family must handle all household employer tax and labor law obligations.

I tried some in-home care for my 97 yo father. Unlike your mother, he was very resistant to having someone in his home, especially since most of the time they weren't "doing anything." Actually they were doing what I needed them to do - a little very light housekeeping (we had a weekly cleaning lady), laundry, prep a simple meal, etc. Finally he made the move to assisted living at my absolute insistence. What we both discovered is that he should have done it earlier as making friends, learning the new schedule, participating in activities would have been much easier. He has a private apartment - all his own furniture, can have a pet, overnight guests, come and go as he pleases, etc - just like in his home. There is a nurse on duty at all times, many LPNs and staff around, and they do a good job of keep track of the comings/goings of the residents. I am now able to call the front desk when he forgets to hang up the telephone after a phone call and ask them to go to his room and remind him to do that, instead of making the drive to his house to put the phone back on the hook.

Full-time in-home care may not actually be the best thing as there is no socializtion and can become very isolating. Assuming you find an assisted living in the neighborhood she can keep her old friends and make new ones. My father continues to attend his same church and outside activities with help from me and other friends, but now we aren't responsible for the constant needs when he was living in his house.