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It is slowly becoming a reality that my mother will need some care at home. This is a concern because she is digging her heels in and stating that if she needs 24 hr care at home, she wants to remain in the home with round the clock care. She has some money, but paying for full time care will quickly deplete her funds.


I am not able to do any of her physical care due to health problems. I am able to take her to the doctor now and also do her grocery shopping.


What is the reality of round the clock care? Has anyone ever done this?

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
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BarbBrooklyn Feb 18, 2019
My "treasures" are stored up in my head, not tchokes on shelves.

Give me a care center with many eyes on my condition, RNs at the desk and MDs/PAs/NPs on cal 24/7.

To each his own.
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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.
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nymima Feb 16, 2019
Great information. TY
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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!
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Samantha2234 Feb 18, 2019
Hi, when you say “controlled living environment”, what exactly does this mean? Thanks for all your helpful advice. :)
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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.
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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.
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nymima Feb 15, 2019
Valuable information. TY
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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.
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katiekat2009 Feb 18, 2019
How did she qualify for an ALF at all being immobile and with severe dementia?
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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.
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nymima Feb 15, 2019
She is needing more and more help with meal prep, laundry, probably dressing and bathing. She has chf and afib and she seems drained all the time. I can do her meds once a week and she gets meals on wheels, but she’s not very interested in cooking the meals herself. I’ve been her caregiver for over 7 yrs now and this has allowed her to remain in her home all this time. I handle everything for her like her bills, her groceries, social visits and doctor appts, but I haven’t had to do the running of her home all these years. She has been able to do it up until recently. She has a housekeeper who comes in twice a month, so I don’t have to worry about cleaning.

Ive mentioned to her about bringing in someone to help her for some things, but she is the one who jumped into the subject of staying in her home should she ever need full time care. It must be on her mind. A neighbor recently went into a nursing home because she fell and broke her pelvis. So, I suppose my mother is letting me know ahead of time that she won’t go into a NH.

I hope it never gets to that point, but there just isn’t enough of me to go around. I know the rich and famous have full time care at home - but wasn’t sure of the reality of home care like that for regular people like us. 😊
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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.
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texasrdr22 Feb 16, 2019
So, if I understand what you are saying, private care is best. How does this work if your loved one needs 24-hour around-the-clock care? Do you need 3 of these individuals? Where do you find private caregivers if not through an agency?
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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.
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needtowashhair Feb 16, 2019
Why did you get workers comp for someone you only paid $1,200 to in a year? I don't think by anyone's standards that person would be considered an employee unless all that was paid during the same quarter. Even then you might not need to provide workers comp. It depends on the state. Some states you never need workers comp for domestic employees. Others they have to be considered an employee. One way to determine that is by the amount they are paid. $1,200 a year definitely does not qualify for that in my state. Unless they are working for $1 an hour, even by hours worked it wouldn't qualify.

If they aren't employees then they are occasional workers. Thus they should be covered by the renters or homeowners policy for occasional workers. Other examples of that type of worker is a baby sitter or a gardener.

That's the way I understand it.
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Taxes for those who hire a private duty vs a company:
https://www.thebalance.com/household-employment-taxes-3192937?_ga=2.73734674.1096113486.1550540248-2092615929.1549630136

If you want to know more information about how to legally claim a caregiver as an employee, the Care.com site makes it really easy!
Nanny/Private Duty Nurse Tax by state: https://www.care.com/homepay/resource-center/requirements-by-state

Things to get filled out before you hire a caregiver:
1. I-9
2. Federal W-4
3. State W-4
(https://www.care.com/homepay/w-4-forms-for-nannies-and-caregivers-1304191931)
4. You will need to apply for an EIN number as well because you are an employer.

Hope this helps someone besides me!
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nymima Mar 8, 2019
Very informative! TY for your response!! I never would have thought of it all.
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