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Assuming money is not an issue, what are the pros and cons of pulling a loved one from a facility and setting them up with 24 hour caregivers in a private home?


Due to COVID, we cannot visit. We have a digital frame that we can call and "see" in the room. Our loved one is asleep more than awake. Prescribed pain meds are the culprit. Care facility says they tried twice a day and it wasn't enough to cut the pain, but three times a day is keeping them groggy. There doesn't seem to be a happy medium. Due to dementia, round the clock care with at least two caregivers will be required. The consensus seems to be that round the clock caregivers will not work. Has ANYONE had success with it?

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My very first thought is making sure someone actually shows up for 24 hours of care. Would this be two 12 hr shifts or three 8 hr shifts? How often would loved one see the same people? What is the plan if there is a gap of any kind such as a sick call or a no show? There needs to be backup if loved one cannot be alone for any length of time. Will the overnight person be permitted to sleep, or will they be expected to stay awake all night - just in case. I do know someone who had an overnight caregiver who *expected * to sleep during the shift. You would need to clear this up ahead of time. Would these people be your employees or would be hire through an agency (who would then handle payroll, etc). Who is responsible if caregiver gets hurt while in the private home? I'm sure there is a lot more. This is off the top of my head.
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What is the cognitive condition of the LO? Being cloistered in a home is a sterile social environment. The staff would also become the companions, so this would need to be considered when hiring.
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frazzledteacher Dec 2020
Due to COVID, we cannot visit. We have a digital frame that we can call and "see" in the room. Our loved one is asleep more than awake. Prescribed pain meds are the culprit. Care facility says they tried twice a day and it wasn't enough to cut the pain, but three times a day is keeping them groggy. There doesn't seem to be a happy medium. Due to dementia, round the clock care with at least two caregivers will be required. The consensus seems to be that round the clock caregivers will not work. Has ANYONE had success with it?
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Basically the answer is "nothing". Given an unending amount of money inpouring, there would BE no pros nor cons. Which of us would not wish, unending money not being an issue, to provide this care/have this care?
But hypothetical it is and will remain, because unending amounts of money is a rare thing in this world. Of course we are in Covid-19 times now. And 24/7 caregivers will be coming and going, and there is exposure more or less to the virus. That aside, 24/7 care with unending amounts of money still seems a good option, if option it is.
And again, money, not an issue?
Are you certain?
Think of the cost of 24/7 care. Figure it out by the week, by the month, by the year.
Bill Gates may not be in trouble. For the rest of us? I suspect we may be.
Hypothetically.
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AnnReid Dec 2020
I would not wish to have in home care if/when my time comes. I’ve already selected my AL and my kids know it.

Although EVERYTHING is definitely impacted by Covid, the MC where my LO lives is bright, cheerful, staffed by pleasant people and well maintained.

Will being in her home provide constant cheerful distractions, multiple social contacts, different sites through the house, entertainments and church activities and weekly hairdresser visits?

A really well run residence can be like a beehive of activity. Even if I’m just observing, that still serves as a plus for me.
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Don’t do it!
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First thing to come to mind is cancellations/delays/no-shows.

I met a lady with CP with declining function, vertually a quadriplegic. She lived in a private house, a houseshare with others. She was cognitively able to arrange all her own care, book wheelchair taxis etc. She had a voice activated phone system. For no-shows, she would be left in bed, or wheelchair, often dirty & unfed & had to call her usual agency then backup agencies for assistance. She was holding on to her independentce very tightly but at the cost of irregular care, skipped meals, missed appointments & huge frustration. She said once she needed 2 X assist, she would need to move into a NH.

While her physical condition was worsening, it was very slowly & mentally she could arrange everything for herself.

Some elders declining in mobility only may cope with that setup but if declining cognitively as well... especially with a progresive condition like dementia I just can't see it working for long - unless there was a VERY dedicated & organised caretaker/care manager.
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I have a few questions. If your loved one needs pain medication in the facility she will also need pain medication at home, meaning lots of sleeping in both places, right? You can't visit right now due to Covid, but loved one is sleeping and not able to visit anyway. Once the vaccines are rolled out soon, indoor visits should resume.

Who is going to cook the 3 hot meals a day at home that the facility served? What about laundry and bed linens? Is the bathroom and shower at home handicap accessible including bars and shower chair?

What about the doctor who came into the facility and won't come to the house. How will loved one get back and forth to doctor appointments? How about all the medication changes.......will they be picked up by a family member at the pharmacy after work?

A facility is a village specifically designed for safety and one stop shopping for the elder. A home is not. There are many considerations to think about before removing a loved one from managed care and taking them home. Just the aggravation of wondering if the carers will show up and what is Plan B if they don't is something to think about. Then payroll and taxes and all that fun stuff, not to mention liability insurance and workmans comp? I have no idea but you'd have to look into it since we live in a sue happy society, especially for people where money is no object. It's a lot to worry about for the privilege of a few visits a week, that your loved one may not even be aware of.

Whatever you decide to do, just go into it with eyes wide open. Good luck!
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Great question! I wish I had done more real-life research before deciding on home care for my parents with the agency I chose.

Probably the biggest "con" I find, which kind of covers all of the individual cons, is that even when you hire an agency, you still end up providing and directing a lot of the care. I thought that with hiring an agency, the agency was now filling in for me and managing my parents' care. Nope. Now I have to supervise the agency and individual caregivers as well as provide care for parents.

This might be different for you if your LO is able and willing to manage the agency/caregivers and tell them what needs to be done and make sure it's done. But, my parents were never agreeable to hiring help, so I had to "force" it on them and be the on-going boss for the agency.

If you like being a manager, are skilled at it, and have the time for it, your stress with in-home care may be reduced. I, however, am not a skilled manager.

One of my biggest frustrations with our agency is "no shows." Sometimes caregivers don't show and don't even call to tell you they aren't coming. If your LO isn't capable and willing to make a phone call to you and/or the agency, you're not going to know that they are without care. You'll need to find an agency that somehow monitors that each caregiver is in the home for each scheduled shift. If agency doesn't do that, YOU will need to check in by phone, video, or in-person for EACH shift to make sure someone is there. Maybe not a big deal if this is your only task. But chances are, this isn't your only task for your loved one, and you also have things you want/need to do for your own life.

You'll need to have a plan in place for who provides the care when there is a "no-show." Are you willing and able to drop anything and everything when there are no-shows, so that you can provide the care for the shift?

And, no-shows are not always due to irresponsible caregivers. Sometimes caregivers schedule off days or weeks in advance, and the agency has a "computer glitch" and no one gets scheduled to cover the shift. Or, a caregiver calls in sick, and the agency can't find someone to cover the shift on short notice. Whatever the reason is for the no-show, YOU are the one who now has to make sure the shift is covered.

Sometimes, the agency will send someone, who is not real skilled, just so they can cover the shift. Be prepared to get a lot of phone calls during this shift, or to find that important things weren't done, such as coumadin not being given.

Who's going to provide the training for the things that are specific to your loved one and their home? Things like "the basement door needs to be kept locked so Mom doesn't try to go down to do the wash" and "the key to the basement so you can do the wash is on the 2nd shelf in the hall closet." Are you going to take the time to write a training manual and update it with any changes? Can you rely on each caregiver to read it, follow it, and keep up with changes/additions? Or, is the agency training the caregivers on specifics for your loved one? Is the agency making sure the caregivers are doing these tasks? How are they monitoring the caregivers? Most likely, they are just asking you if the caregivers are doing OK, which means you have to monitor the caregivers.

These are only a few of the cons I ran into with in-home care. I don't have room to write about problems with meal prep, grocery shopping, managing the mail, monitoring time sheets, doctors appointments, toilet clogs, trash removal, lawn care, snow removal, transportation, TV remote malfunction, etc.

As far as "pros," there are some. Mom and dad are less confused in their own home, and their moods are more stable. Plus, I don't have to go through the stress -- yet -- of forcing them into assisted living and hearing them complain, yell, and cry at each visit.

Would I hire in-home care again instead of placing them in assisted living? Probably not.
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texasrdr22 Dec 2020
I have a good friend who hired 24-hr care for his mother. He said he became the "hospital administrator" with all the cons you mentioned. Basically, these aides were "babysitters" and he had to manage the whole thing making sure someone showed up for each shift. He was paying an agency about $12,000 per month!! Yikes!
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I did medical billing for a company that was part of a team that helped a multimillionaire live out his last days at home. I have no idea if he had dementia, cancer etc.

A wing of the home was turned into a nursing home/hospital ward. There were three generations of family in the home. There were rooms set aside for the staff to use for their break room and overnight staff accommodations. Medical equipment was brought in. There were 24/7 private nurses, a doctor on call for house calls, physio therapists as well as personal care aides.

The gentleman receiving care was a billionaire.

One of the biggest drawbacks to providing care in a home, is social isolation. The LO only has their family or care givers to provide social interaction. Now you might say that during Covid that applies to nursing homes too, but in my experience the residents still have their activities, they are not locked in their rooms, early on that may have been the case.

We see many posts here about people being worn out by the constant social demands of LOs at home. Even the bedridden constantly calling out or ringing a bell for help. LOs following their family member, endlessly questioning them etc.
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katepaints Jan 2021
I think there's a lot to be said for facilities helping diminish social isolation. I've experienced several clients who fought tooth and nail to avoid going to a nursing home. But soon after they were wheeling up and down the hallways checking in on friends or participating in activities. Yes, there are some terrible places, but there are good ones too. My ex's sister put off for years placing her 90 year old aunt into assisted living because the aunt had a beloved cat and it was assumed she couldn't have a cat. Turns out she could. Her aunt likely would have been healthier and happier.
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We have smaller group homes that are in actual residential areas. They are converted homes.

Some people love the homey atmosphere of them.

The one here is owned by a group of nurses.

My husband’s grandmother had two caregivers full time. She had money and my MIL was an only child with non Hodgkin’s lymphoma. There is no way that she could have cared for her.

Even if my MIL was in good health, her mom would have never have moved in with her.

She lived in a huge home uptown. My MIL was in the burbs in an average size home.

My MIL was a doll but her mom was a monster! It would have never worked out well.
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frazzledteacher, when my Dad was in a facility, I never even gave it a thought of pulling him out to live at home. In my Dad's situation, he LOVED the facility. Loved being around people from his era, loved the food, and liked the idea that was always a nurse on duty :)

At the facility Dad did have is own private Agency 1st shift caregiver, who had been with him even when he lived at home. So there was a routine, he would see her smiling face when she arrived to work at 7 a.m. and would leave around 1pm. The facility first checked with the Agency to make sure the Agency and the caregiver were up-to-date with whatever requirements.

Now, prior Dad did live at his home and had 3 shifts of caregivers from an Agency. The 3rd shift caregiver the Agency required her to be awake the whole time to listen in case Dad was getting up so she could help him. No complaints about the Agency. The cost was $20k per month. Glad Dad saved for that "rainy day".

Now, the above was a few years ago, long before the covid-19 breakout which had thrown a huge wrench into everything. Even with vaccine, there will be the same percentage of people not wanting the vaccine, similar to those not wanting the flu shot. Thus, covid-19 could be around until 2022. After studying up on the 1918-1920 pandemic, the covid-19 is running parallel. History is repeating itself.
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Make a list of everything done for your loved one in the care facility. Make sure you include every thing, no matter how small.
Every single thing on the list would have to be done at home.
No doubt some of the care on your list cannot be provided by ONE agency and supplemental help is needed or you will need to provide it yourself.
Now make a list of all the adaptive equipment the home uses to care for your loved one. Do you have room for it? Can you change the home to accommodate for it?
These are two big questions yo ask yourself.
I believe with all my heart that my loved one who always says she wants to go home, would regret it after experiencing the level of care she is now accustomed to.
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Frazzled, home health aides are not allowed to administer medication. They can only "remind" the patient that it be taken.

I see that issue as a huge stumbling block.

Has your loved one been seen by a pain management doctor?

My best friend's mom (she is 100!) still lives in her own apartment with live in aides provided by Medicaid (this is in NYC).

It works out okay except that this fragile old lady must be taken out for doctor, dentist, audiology, podiatry and optical visits. By contrast, my mom, in a nursing home, had these services come to her.

My friend is constantly frazzled over her mother's anxiety, agitation and depression. I suggested a geriatric psychiatrist, but very hard to find one that accepts Medicaid and it would mean a long cab ride. Whereas my mom had a team of behavioral health folks who were able to see her at different times of the day, talk with her other providers...

This dear lady is constantly worried about breaking religious laws because she doesn't remember if it is the sabbath or a holiday. If she were in a facility, she would have others around her celebrating.

And she doesnt "know" that she is in her own home.
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Pretty much did this for my mom, who died in February. My thoughts:

*You will definitely have more peace of mind. However, for me it was like running a small company. Have to start treating the home almost as a commercial location rather than a private home. Higher utility bills because of a helper always being awake with lights on, tv, etc. Buying toilet paper, detergent, liquid soap, etc., in bulk at Costco. Keeping track of food and when it needs to be replenished. Keeping track of a schedule so that you/the helpers know who is scheduled when. Being prepared to fill in yourself if the agency is scrambling for a fill-in and you don't like the person they want to send. Managing all the household bills, property taxes, etc., in addition to any health management, appointments you have to take on.

Lots more. For me, though,, it was worth it. The keys are finances and if you are local. If you are out of state you will basically have the same issues you would have if your loved one was in a facility. I would say if you are local and care about your loved one, try the home route. If not, go with the facility but be aware that you will still have to deal with a multitude of responsibilities, phone calls, etc., plus any worries you might have over what is going on in your absence.

Good luck!
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Tornadojan's answer is spot on. If your LO is happy in the home, why even consider a move? But if you feel he/she is being neglected, or has been in isolation due to Covid restrictions and cannot see family and friends anymore, it's something to consider. That said, you will take on a huge amount of responsibility in other ways so think about if you have the time, money and resources to do that.
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It is a HASSLE and a HEADACHE! Caregivers will call in sick, even if you hire an agency they do not keep spare caregivers sitting around doing nothing so they can send them in a minutes notice. The caregivers will argue over who does the most work, who should have to wash the clothes or dishes, who had the best hours, etc. and that was the "professionals" from a company!!! We ended up firing that company. If you don't have an agency, there's a LOT of paperwork! I let my brother handle that part (he owns a business so he knew that end). The ladies we hired "off the street" were very dedicated, but still had some drama. They loved the money they were making so they always showed up, but Covid19 wasn't going around then so we didn't have to worry about anything related to that.

My 83 year old mother-in-law is now at the point of needing help and my husband is an only child. After knowing and seeing what I went through with my mom, he says she will just have to go to a nursing home.
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Frazzledteacher - (1) Are you certain money is not an issue? That is, have you contacted agencies in your area to find out exacty what 24-hour care would cost? If not, it might be eye opening! Also, in my area, the money one has can determine the quality of nursing home one eventually goes to. The better nursing homes in the area can be pickier about who they will take and tend to like a senior with a certain bank balance. If the money is used up for in-home care, it may be more difficult for LO to go to one of the nicer nursing homes when the time comes. Obviously, though, it’s a ‘crap shoot’ because LO may die before nursing home care is needed. (2) If you keep LO at home and hire 24 hour care, you are tasked with staff issues. Why? Because people don’t show up! You may think an aid is with your LO only to call and find out no one showed. Then there are calls to the agency to tell them no one showed and wait for them to send someone else out. How long will your loved one wait? Maybe not long; maybe until the next shift, hard to say. During that time, if your LO cannot be alone, you or someone you know will need to fill in. Many agencies are currently short staffed due to the pandemic. (3) You would be in charge of medications. Keeping track of them, getting refills, filling medication pill boxes. Will you be giving the meds? (4) Who is preparing meals, buying the groceries to keep the refrigerator stocked? If the scheduled aid does not show and no fill-in can come shortly, even if LO can be alone, can LO cook? What will she eat and when? These are some of the issues. Hope it helped.
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UPDATE: They are staying put. Thanks to everyone for their perspectives on this issue.
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Day aide (indy/family member): $25/hour 5/days week = 65,000/year
Night aide (indy) $20/hour 14.5 days weekdays plus 48 hours weekends=94,120/year
Housekeepers $300/mo 3,600/year
Gardeners $300/mo 3,600/year

$166,320 a year. That's what ILs are paying for people to take care of them. Plus their regular household expenses. If people get sick (covid or not), there is NO backup plan.
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