Assisted living vs. private live-in companion. Any advice?

What are the reasons for the 24/7 care that is now required?
If mom has dementia and is wandering or she needs more that a 2 person assist for getting her out of bed, up out of a char or any other transfer AL facilities can not do that. the use of "equipment" is limited to Skilled Nursing facilities.
If mom is wandering then she needs to be in a secure Memory Care facility.
If the reason for her to be moved is they need to use equipment then you will have to get the equipment in any apartment or condo you lease or buy.
If the reason is wandering you will have the same risk in any apartment or condo.

A bit of info as to why she now needs 24/7 care might help the answers.

Bad idea to rent an apartment and hire a live-in companion. If her medical condition is at the point where she needs round-the-clock care she belongs in a nursing home.
A companion can't manage it. No one should ever have just one person doing 24/7 care to begin with.
Place your mother. That's usually what's best. Hire a companion to go to the nursing home you put her in to visit and entertain her.

I tried AL for my Mom first. All she did was complain, and wanted to go home. I felt the care & food was inadequate. She is now back home, and I found caregivers on Care.com. The care has been better, and more economical for her. During the day the help are self-employed medical assistants, then at night I am able to have someone with lesser skills. The plus, she is in her comfortable home where she wants to age in place.

24 x 7 supervision can mean different things to different people.

My Mom needs 24 x 7 supervision because she falls. She is in Memory Care. Someone comes by every 3 hours to ensure she is still safe. She has a bed monitor so that they know when she gets off her bed. She has been instructed to always pull the cord so that someone can help her get off the bed. She is NOT bedridden, however, she does need 24 hour x 7 assistance. We do NOT have a separate caregiver who is there with her 24 x 7.

My Mom used to live in an apartment complex where there were people who were bedridden. They hired around the clock care caregivers to fix food to eat, give them a bath, keep them company, etc. However, they were not able to leave their apartment so if they had any visitors, the visitors came to them. The apartment complex had 24 hour emergency service with guaranteed on-site manager/security immediately available 16 hours a day, 7 days a week. There was an emergency number that could be called that would reach the on-site manager during those 8 hours who would respond to the phone call (the difference was whether someone was sitting in the desk area or not). I don't know if each one of these caregivers were RNs or not, because in our state, one must be a RN in order to dispense medicine. (If all the caregiver had to do was open the packet and put the pills in my Mom's hand, that does not require a RN. However, if the person has to put the pill into the person's mouth or measure out the pills, then that requires an RN.)

My Mom is too much of a social person. She would not want to be in a room by herself with just a caregiver. She can't use a telephone and definitely is not internet savvy. When I chose to reduce my caregiving duties, we toured and found this Memory Care facility. They have RNs to dispense medicine and lots of caregivers to do everything else including helping the person eat. They have a program manager that ensures there are appropriate activities.

Both are expensive. However, when I did the math, the Memory Care turned out to be less expensive after you added in the electricity, housekeeping, laundry, food and activities, plus she got to see other people.

There is another less costly alternative and that is to place my Mom in a residential home. They are smaller and have less days of structured activities. When they intermingle, it is with only the other residents of the house. Each house has around 8 people. They share a RN with the other houses and have about a 2-3:1 ratio of caregivers to residents of a house. RN, laundry, food, housecleaning were all shared with the other houses. So the caregivers are totally dedicated to tending to the residents and the residents were assigned to specific caregivers.

So I can't say that AL is better or worse than private care. A lot of it depends upon where you go (or are you paying directly or through an agency) and what you are expecting out of this care.

I look at this from financial point of view.
As my husband’s Parkinson disease will become worse and more care will be needed we have to plan this carefully.
Selling bigger house and buying condo would allow for extra money and with careful investment could make a little bit of difference.
AL facilities here cost $ 7,000-10,000 per month, nicer with bigger space which is necessity for person with limited mobility using walker.
Dingy, little studio around 4,000 per month.
10 year plan is realistic as far as disease trajectory.
Good AL for 10 years (without adjusting for increases) would be at least 1 mil. And if additional caregiver is required the cost would be astounding.
Hiring caregivers could be challenging too, but, I already have some good prospects and lots of support.
I can see benefits of tangibles and intangibles, having condo as asset or extra money and lower expenses than rent, (which is astronomical)and potentially place to live for surviving spouse and better quality of life as AL facilities have hard time retaining staff and I don’t see this improving anytime soon.

Yes, it can be done if you are determined enough, and have enough money.
As a private caregiver of over 30 years, I can say that if you hire the right person, or group of people, you CAN get 24 hour care in the home. I was part of a team that took care of a man that had been paralized from the neck down for 25 years. he lived in his apartment with care until his medical conditions required hospitalization right before his passing. Another client needed 24 hour care due to dementia. A company that operated online only (I don't think I am allowed to share their name here) was used to find enough care to keep him home until shortly before his passing. So it CAN be done. Check to see if she qualified for Aid and Attendance Benefits through the VA, if she is a widow of a veteran.
Some care companies will over promise and under deliver, so be cautions if you hire through a company. If you hire a live in, he/ she can't stay in the house 24-7. he/she will also need time to do personal errands get their hair cut, go to their own doctor appointments etc. Check into a home share situation.
You may want to consider hiring a Case Manager or Geriatric Case Manager in your area to help you coordinate everything. If her medical condition qualifies for hospice you can get some assistance with bed bath once or twice a week, but they don't provide care. Some communities have non-profit organizations that provide respite care. There are a LOT of options, the challenge is getting it all coordinated. Best of luck to you.
PS, consider getting a lawyer to draw up papers if you choose a live-in, or private care. You need to consider the ramifications if there is an injury. or review contracts, as

Trustee: As your mother requires round the clock care, it appears that she needs the assistance of many at a skilled nursing facility. A live-in companion would not be able to be on the clock or twenty-four hours.

We had private caregiving firm for my mom. Yes it was very expensive. One reason is my moms home was a shambles and not in condition for a live in.

Something to consider with a live-in is who relieves the live-in when they are fatigued? Who watches patient when live-in needs to go on errands? When does the live-in get a day off?

My concern with live-ins is their burnout and how patient care is affected. I think at a certain point the care needs to be implemented by a team of persons. I speak from my experiences and what we went through with my moms care.

Good luck. This is a difficult journey.

My Dad entered the hospital ICU. I went to DE from VA to handle that and left when he went to rehab.

the night I returned home Mom fell. It was a hoarding situation on top of health issues. We hired two shifts a day to care for Mom and it was $3,000 per week. They got her up, helped dress her and helped her to the bathroom. It sounds like your Mother, like mine, needs more than a companion.

I moved them to an assisted living facility 1/2 mile from me that takes care level all the way up to memory care.

Dad passed and Mom has been bedridden for two years. She gets excellent care, has never had a bedsore and she has been there for 4 years now.

I am very hands on and keep a close eye on things and often feed her etc.

A lot of the new AL facilities offer higher levels of care now so do research if you decide to go that route.

I hope you find the best solution for your Mom.

I do want to say, don’t let someones bad experience with AL of a Nursing Home discourage you from looking into placing Mom there. Everyones experience is different. There are many wonderful facilities out there

You are saying “companion” which implies your mom is fairly independent. A companion just keeps her company, plays cards, takes her for walks etc. Sounds like what you really need is a “caregiver” that will tend to her daily living needs, bathing, grooming, providing meals and maybe changing adult diapers. That is very expensive for 24/7 care. You must be clear on what you expect from such a person. Good luck with your decision.

Well it sounds like for sure she no longer meets requirements to be in "AL/ Assisted Living" .

" 24/7 with private caregiver" prompts me to ask is she at
" hospice " level of care ? Have you gotten input from the medical case manager about potential level of care being met in " Skilled Care" facility vs where she is in AL"
Perhaps having her moved to a
" skilled care" facility may meet needs; and / or have her assessed for " hospice" level of care readiness.

Some ( a lot) of AL facilities require moving pt into the next level of care upon pr decline and, this usually means " skilled care", " memory care" , " hospice care" / which may also be in addition to pt being in " skilled care" or " memory care"...

Or, at home or ( your apt. idea) with 24/7 caregivers...... this is a BIG BIG BIG responsibility...with many challenges and cost may be prohibitive . Do yourself and the pt a favor toward the safety and well being of all and, look closely with case manager and PCP guidance at all options.....

Practice good self care and healthy personal boundaries in the midst of the loved ones decline....

Good Idea! It is best to have someone you trust with her that can keep an eye on things. We also have a program here which may be helpful if you need help with the costs for in home care. The one here is called IRIS, but every state should have something similar. They will pay for in-home care which includes family members.

If she needs therapy while at home or a nurse. They do also do home visits. You could check to see if that is covered by her insurance. If not the program I mentioned will help cover those costs as well. They also make sure she has any necessary equipment to help her.

My guess is people who say don't do it, probably haven't done it. I have done all three. The apartment approach has worked wonders. Best financial decision. Best caregiving decision. Lived on her own own for 21 years, had medical issues and decided to move to a nursing home, then assisted living. The nursing home was a nightmare, understaffed, horrible, bad food, messed up meds, etc. Cost was $5600/month. Because you can't pick your caregivers, she had men bathing her. The staff would call me constantly. I had to go there weekly, if not daily. She begged me to get her out. Think you're getting trained staff? Half of them didn't know how to take BP. Found a new assisted living. Gorgeous. Lots of bells & whistles. $6700. First four days, they forgot to give her meds. BP shot way up. Showers weren't given on days paid for. Doors weren't locked. Residents wandered off. Understaffed. Food horrible. Found a second AL. Same price. First night they tried to give her someone else's meds. Later I found someone else's meds in her nightstand. The shower leaked. She fell, broke her hip. Laid there for hours pressing the button, pulling the red call button. No one came. Receptionist finally found her. Food was mainly white bread and deserts. Four COVID deaths. Had outbreaks never told anyone about. After she broke her hip, said I'd have to hire more care. Hired round the clock care which meant the AL staff stopped helping. Later found roaches and saw evidence of rats. And this is a swanky nice place, but it allowed pet. Each time BP went up, insisted on sending her to hospital. I was constantly being called and had to drive a long way to see her.

I live in a nice apartment complex. Decided to move her there. Bigger place. With a garage $1700/month. all maintenance, pest control, trash collection, utils, included. All on auto-pay. Best maintenance staff ever. Has social events she actually goes to because it's uplifting, not a bunch of old people staring at each other. Sits out by the pool almost every day. Payment is setup automatically. I bought / installed accessible things. Use Care.com and found qualified caregivers. NEVER have a live in. It may be slightly less expensive, but you get far better care with hiring more than one. Unlike an agency, I get to pre-screen/qualify caregivers. I've got four great caregivers who provide 24 hour care. I use Care.com's Homepay to pay taxes. So easy. Texas doesn't require workers comp, but policy wasn't expensive. I am now in charge of what she eats, and she gets great low carb, high protein, food that's easy to fix or pre-prepare.

Mom was declining in the AL/Nursing home environment. Anyone would. VERY depressing. People constantly being carted off in ambulances. Staff is nice to your face, but will treat your loved one poorly. We've reduced cost by about $5,000/mo. with Apt. So much less stress for me. I don't have to deal with myriad of staff. I can fire the caregivers if they don't work. You can't fire staff at a NH or AL! She's not that social, but she sees people daily. In AL/NH she rarely left the room. Goes out for walks with caregiver in her wheelchair daily & sees people. We go to weekly things like PT/church. So much less stress on me. I don't have to worry she'll be kicked out or that she will be neglected or pay for care she's not getting. Don't have staff calling every 15 minutes about her. And she's now doing things for herself and is much better off physically. She gets meds on time, eats right, exercises and I can spend time with her without stressing. Place is easy to clean. It takes planning, but it's FAR better than any 'place'. Not for everyone but best decision I've made. Would NEVER place her in NH or AL. Those places really don't 'supervise'. She can age in place here. Gets better care. Eats better, etc. You cannot pick the caregivers at any of these places. That's really the key. And there's lots of great private caregivers out there. They just don't work for agencies

When needing 24/7 cate the choice is more likely between private duty care and Nursing Home, not ALF. Assisted Living does not provide enough support.

Oh lordy no. Companions are fine for people who are functionally independent needing minimal assistance and supervision. If Mom needs 24/7 supervision she must be in a residential facility. As others have pointed out, you will need to pay for care for all of those hours, plus all the other expenses of being an employer, who takes care of Mom if the companion gets sick/has a family emergency/quits, etc. If Mom's problems are medical you may need more than a CNA/GNA and even that is $20-30/hour 24/7 with no backup! No one wants to move a loved one who seem comfortable where they are, but this is often inevitable. Do what you must, pour on the love, and all will be OK.

My mother is home with 24/7 care givers. It’s very expensive. She requires full care. When our father passed away 8 months ago we vowed as long as our care giving team held together we would try to keep her in her home. A live in companion sounds great but depending on the level of care she needs it’s impossible for one person to do it all the time without a break. The worry of the caregiver becoming sick, needing time off for personnel or family matters, coverage during the holidays are all overwhelming. Having a team of people to there has kept my mother in her home, but even with my sister and I there all the time, paying bills, providing meals, worrying about home costs the answer is not easy. The reality is your mother will require more and more care and that will require more costs if she is home.
I wish you luck in your decision. I wish our health care system provided better, more financially sustainable, compassionate care for our elderly. The answers are very complicated.

As others have said, likely best if you start researching high quality nursing homes ("Skilled Nursing Facilities" or SNF that are licensed by both Medicare and Medicaid). AL (assistive living) except for a few that have Medicaid waivers in place in some states, are largely regulated by your State or the State where the facility is located and NOT by the Feds. And if your LO runs out of $, then a SNF will be the only option left. Of course there are great ALs too and if you have lots of $ for that and private aides to augment her care, great! But IMHO best to figure out which SNFs are the best/high quality ones sooner than later. Read this: https://www.washingtonpost.com/business/2023/04/06/seniors-assisted-living-medicaid-eviction/

Most SNF like it if a person can come in as private pay for a while as a "sweetener" to get in to the better/higher quality SNFs. US News, CMS and perhaps your State has ranked/rated SNFs. You can also check things like various quality measures, and even their COVID vaccination rates for patients and staff. Once you have a short list, go and visit. See how they are staffed and how things are run, activities for the residents and are folks participating? Is there a memory care unit/wing on site if that is needed later so you do not need to move them again. Speak with the RN and floor aides; are they nice, warm, engaging. Do residents look well kept, rooms and common areas clean, etc.

My mom's SNF has high marks. Of course it is less "homey" than AL, but many of the private pay residents (they get private rooms, some are larger w/a separate sitting area) have set up their rooms to be more homey. A woman on my mom's floor has antique furniture and art work from her home in her room, which has a hospital bed of course and no rugs (tripping hazard) but the secretary desk in her room is beautiful. She has plants and flowers too.

My mom went in as private pay and spent down (she had very little in the way of any assets), and Medicaid took over after the 8 months of private pay. There are lots of activities (two "exercise classes" a day, art classes, book club, a game room, gardens, even a daily movie in the hall). My mom has all her meals in her room, she does not socialize with others and she picks out what she wants for all meals the week before. She could go to the dinning hall but chooses to not do that.

And most all the medical care is provided right there. Her geriatric MD on staff sees her at least once a month, but always when needed. That MD is there 3 days a week. But there are RNs there 24/7 too who can handle things. The podiatrist makes rounds every 6-8 weeks, the optometrist comes once a year or if needed, and a "dental service truck" (18 wheeler semi set up as a dental office with a lift) comes several times a year to handle that part). There is a geriatric psychiatrist, psychologist, PT and OT staffers. And some specialists on contract to make rounds as needed (cardiologist and neurologist) but if other medical services are needed the social workers on staff will arrange medical transport and apts with specialists if needed. She is on a "potty and shower schedule" w/aides who help with both to prevent falling, my mom can only walk about 5 feet with a walker at this point (she is 86, has dementia later middle stage, cannot walk or do much else at this point, she can still feed herself if someone cuts the food for her).

Is it a lovely hotel, NO. But it provides the 24/7 care my mom needs and I do not have to kill myself trying to do it on my own (as I was attempting to do for many years, but it was not sustainable). And no, there were not sufficient resources for 24/7 aides. The spend down pathway was the best option for her to get the care she needed and for me to still "have a life."

Good luck with this journey. It is a journey none of us wanted to go on, but we are on it no less.

Wow, many great responses - thanks!
The supervision is because of her very high fall risk (postprandial and orthostatic hypotension) - basically watchful eyes at all times. No matter how we do it, the cost will be astronomical, so we will go with the consensus and keep her in the care of professionals at the ALF. I'm too old myself to want to be an employer again. Thanks for the insights!

Dad's live in caregiver at home costs more than 10,000 a month. Plus, I still need to help with things.

Either way is expensive

I think a SNF is the way to go in this situation. It’s not perfect but your mother will receive all the support she will need. We placed my dad recently. It’s not perfect but his needs are met. He had bronchitis a few weeks ago. He had a chest X-ray in his bed to diagnose it. I would not have been able to get him out of his house to get a chest ray so it was good he was there. I can sit with him and visit as a daughter, not be a nurse. They do have activities during the day so there is more stimulation than laying in the recliner and sleeping all day which is what he did at home.

Aside from whether or not this makes financial sense something else to consider is that in this kind of scenario her whole world will shrink down to her apartment and the two or three people who care for her, there will be no opportunities for any social interaction. Plus you will no longer have many eyes on them and her, no staff RN or facility doctor, no dentists, podiatrists, hair dressers and whatever other amenities your facility provided.

Trustee, welcome to the forum. Sounds like the facility was recommending that your Mom now needs the around the clock care that one would received in a Skilled Nursing Home.

As others here have mentioned, a live-in companion would be doing the work of 3-shifts a caregivers per day. One person doing all that work will burn out very quickly. Then you are back to square one looking for a new companion. Plus a "companion" cannot handle your Mom's medication, you would need to do that.

Renting an apartment you have the monthly rent, furnish the apartment like that of a nursing home [hospital bed, etc], purchase renter's insurance, plus the companion is now an "employee", either you or your Mom will need to get "workman's comp" in case the employee gets hurt on the job. And all the accounting involved with payroll.

I would recommend looking for a Skilled Nursing Home. I hope you aren't paying for all of this, as it can take a huge bite out of one's savings.

The same discussion has occurred for my husband's aunt (94)with advanced dementia.
One person (stated in another response) cannot provide 24/7 care. It is physically impossible. They would need time off, vacation & sick time. Right now our aunt has a team of four private caregivers who cover the daytime hours 7a-7p. Aunt is in bed at 5:30. We have in house camera monitors for during the night. The time will come when she needs a nighttime sitter also.

If this is a medical condition other than dementia then Skilled Nursing facility is probably what she needs.
If mom has dementia I can understand why the AL wants her to have 24 hour care. AL is not the proper place for someone with dementia. If this is the case placing her in Memory Care would probably eliminate the need for a 24 / 7 caregiver.
The reasons that she needs the 24 hour caregiver will not be eliminated by placing her in an apartment with a caregiver. You will need more than 1 caregiver. (1 person can not work 24 hours a day 7 days a week.)
Do not forget that mom already has caregivers (the AL staff that is supposed to be helping her) so all the things that all the staff does do you think 1 caregiver can do?
And if you are looking for an apartment or condo you will need to look for the following..at a minimum.
2 Bedroom (unless your caregivers are not live in)
Handicap accessible bathroom
No carpeting
Wide halls, wide doorways.
(If you are looking for an accessible unit chances are this is all done. If not you are looking at renovations)

I think if you add up all that is included in Memory Care VS renting or even you purchasing a condo for "investment" going to MC is less expensive.
Cost of rental insurance, gas, electricity, water bill, garbage bill, cost of caregivers insurance, the fees that you will pay to make sure they are paid legally, food bill and I cold go on. You have none of these expenses if she is in Memory Care, all those charges are figured in to her monthly fee.
Not to mention the socialization she will continue to have living in a community rather than being in an apartment with a caregiver.

If you think it is expensive now, just wait 24/7 care plus apartment rental fee and other expenses will be at least double what she will pay for a facility.

Staying in Al with the care you are told she needs doesn't make sense to me. Sounds like a nursing home is more in line or if it is dementia related MC.

A home that has a step up program is where we placed both my mother & step-mother. Step-mother was in AL now in MC, my mother at 98 is still in AL, doing fine, very healthy over all for 98, and her mind is sharp.

If mom needs 24/7 personal care, it sounds like Skilled Nursing is in order. Relying on a "companion" in a private apt does not address the medical requirements at all! And what about when this helper calls in sick? What about 24/7 medical supplies, equipment, food shopping and prep, laundry, someone else to cover the night shift, etc? Appointments and how does that get managed? Med administration which companions don't do. Experienced people to safely bathe her, etc etc.

Your plan is undoable imo. Plus, you can wind up spending MORE this way and getting LESS.

Look and see if Morningstar Assisted Living exists in your area. Although AL, they accommodate more needy residents who require a LOT more care than traditionally offered in regular AL. It's like a cross between AL and Skilled Nursing. Yes, it's more expensive but probably no more so than in home 24/7 proper care. Plus doctors come in house and meds are done on each patient.

Good luck to you

Just want to tell you about what I observed yesterday at the hospital. I was there all day with my husband who had surgery.

I went to grab a quick bite in the hospital cafeteria. I picked out a sandwich and my bottle of water and sat at a table to eat.

There was an elderly woman with her private sitter getting ready to be seated to eat as well. I would hire this person in a heartbeat. She treated this older woman in a wheelchair with so much warmth, kindness and respect.

I could instantly tell that the older woman was completely comfortable with her sitter. She was the kind of person that all of us would dream about sitting with our mothers.

When our children are young we guard them with our lives. When our parents grow old we want to be strong advocates for them so they will receive the very best care.

We want caregivers who will allow our parents to retain their dignity. I saw that in the sitter at the hospital yesterday.

When my children were young and I was concerned about finding a good sitter so my husband and I to go out by ourselves occasionally, a friend of mine gave me excellent advice. She said that if I were ever to take turns with another mom watching each other’s children to watch carefully how she treated her own children. I never forgot her advice. She said that if the other mom was rotten to her children that she would be rotten to mine too.

I think this advice applies in any kind of caregiving. If an individual cares for their own parents well, either themselves or by being an excellent advocate for them, they are going to be responsible with your parents.

In your particular situation, I still vote for facility care, but if you do decide on a private caregivers, be very selective about the people that will be staying with your mom day in and day out. Also, install cameras. A picture is worth a thousand words.

"Her medical condition will now require 24/7 supervision"

Is the supervision expected to be temporary or ongoing?

For what reasons? Medical? Falls prevention?

I agree with everyone who said no-go regarding private caregivers in an apartment. I considered this for my mother and discarded the idea.

You'll need more than a companion. A companion generally will not handle bathroom duties. You'll need at least two caregivers, one live-in and another one or two for reliefs. They should at least be CNAs. Add to that managing the things that make a home - paying rent, handling water bills, electric bills, pest control and so on. Then insurance and withholding taxes for all employees, and all of the foregoing will take a lot of your time and energy.

Your caregivers will want and need some time off. Living in an apartment with a seriously ill old woman is not going to appeal to most. They may want weekends off so they can go home and tend to things.

Leave her where she is. I don't know why she needs 24/7 in an AL facility with a private caregiver. She may be ready for a nursing home.

I'm sorry you're going through this.

Go with the skilled nursing vs private care. She would need more than one private caregiver. Hiring two full time caregivers is very costly.

In a facility, you will have a complete staff to care for your mom. Many facilities will have other amenities that are convenient to have. such as hairdressers, a chapel, perhaps a lovely garden, etc.

My in-laws did the private caregiver route for their parents. They had excellent private caregivers and fortunately their parents were able to afford it. Their parents wished to remain in their own homes. So, if money is no object you could look into both situations.

I would ask a private caregiver if they will help you to find a replacement caregiver if they need to take time off due to illness or an emergency situation. They may know someone or be able to suggest an agency that they like as a temporary solution.