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Hello. My first time here. We are attempting to hire an in home companion /aide for 24/7 care for our parent who suffers from ALZ. She is fairly fragile and so far has not comprehended the lost of spouse.
My brother and I have been sleeping in the living room at night in shifts but eventually wish to transition to an aide. Any advice on the best way to do this as not cause the least amount of disruption?
Will it be horrible any which way? We are trying to keep her surrounding the same as long as possible in order to not to accelerate the deterioration. Any advice will be appreciated.


Thank you.

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I would find a facility that she can age out in.

She will only get worse and dealing with 24/7 caregivers can be a challenge and it is extremely expensive.

Finding a facility that can meet her increasing needs will give her a routine and help her to get settled for the long haul.
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Reply to Isthisrealyreal
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"An" aide for 24/7? One aide?!?!?!??!
you need a rotation of aides for 24/7 care. If you private hire, you will be the employer and have all kinds of issues there. if you hire from a company, you will pay far more.
If you find someone who was willing to live in and provide 24/7 care.... good luck, but my mind goes straight to a criminal or negligent person needing a flop and they will be bringing in their friends into your parents' home
I would suggest a care home situation if she needs that much attention.
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Jada824 Jun 15, 2021
Cashew is correct. This is exactly what happens in a lot of situations with 24/7 care in the home especially with no other family members being around.
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The cost of 24/7 care in the home will cost you about 10k a month and thats at $15 an hour for CNAs not nurses. In my State CNAs cannot give medications. They can remind but they cannot fill a pill planner or hand medications to a client unless they are trained medtechs. If Medicaid is in Moms future, then you will need to be taking out taxes and SS and matching that SS. Your are the employer. Aides are not self employed. Then its getting 3 people you can depend on. Of course on this forum we probably only hear the bad things but people have been stolen from. Food, paper products, jewelry, etc. Aides not doing the work hired for. Live ins taking over. Then will not leave when their client passes or moves on to a facility. I get overwhelmed just hearing these stories.

I really feel my Mom did better in an AL. In my house she was limited to the room she had in our bottom level of our split level. She could no longer read, her passion. Just sitting in front of a TV which she never did when we kids were growing up. My house is nothing but stairs. The AL was one floor and square in shape. So she could walk the hall and always end up back at the Common area. There were parties all the time. Activities and entertainment. I think she did better there. More interaction then she had at my home. I have to laugh when I see the advertisements where the aide is exercising and entertaining a client. Not saying there aren't those aides that wouldn't interact with their client but I would not expect it.

I would suggest you do a tour of some Memory Care facilities. See what they provide and how the clients are cared for. I placed Mom eventually in an LTC. There was always something going on in the activities room. She could not always participate in the activities but she loved watching other people enjoying themselves.

"We are trying to keep her surrounding the same as long as possible in order to not to accelerate the deterioration."

The worst thing about Dementia is watching them losing the grip on reality. They are not "in" this world anymore. They are in a world their minds have created. Very confusing. Emotional because they have no idea what is going on. You are familiar but who are you? I prayed God would take my Mom. It wasn't fair that she had to live her final days like this. She had no quality of life. So does it really matter that your Mom may decline if not in her own home. Mentally she is already gone.
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BurntCaregiver Jun 17, 2021
JoAnn29,

It doesn't have to cost $10,000 a month if they hire privately because they can negotiate the wages with the caregivers.
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As others questioned, AN aide? Currently there are 2 of you taking shifts. How would one manage? Plus, you mention nights - who is there during the day?

Many people think AL/MC or NH is more expensive, but it isn't. If you hire from an agency, it will likely be at least $20/hr for day shift, more for evening, even more for overnight and holidays. Just going with $20/hr, you're talking over $14k/month. Then add in the cost of the residence (home or apartment), utilities, food, supplies, etc. That $20 is likely on the low end as well, but it would be even more than $14k when you figure in the cost of the residence AND the off-shift/holiday charges.
Then there's the management of care-givers. Juggling, making snap decisions when someone doesn't show, worrying about what kind of care she is getting, etc. There are good situations and bad. Cameras can help, but it's still up to you to be juggling the care-givers. Hiring self-employed or live ins requires being an employer, deducting SS, taxes, etc and reporting. Hiring from agencies is kind of a crap shoot. Some are very good at what they do. Others are just taking up space and air. Also, as someone else noted, CNAs are not allowed to manage medication. They can't even touch it. If it's in a timed locked dispenser, they can point it out, but can't give it. If your mother needs assistance takings meds, you'd have to hire a nurse, much more expensive!

Familiarity doesn't always work out. Many still want to "go home" when they are living in their home! Home is a place in time, not a physical place.

You would do better to spend time, check out the various places in your area. Now that most are vaccinated, you should be able to tour the places. Don't base decision on reviews or brochures - see, hear, touch, taste, feel the places. Go again at different times. Ask questions, be observant.

Not all places are the same, and there are certainly bad stories about some, which is why it's important for you to thoroughly check the places. There are many of us on here who had to find a place for mom and/or dad or even a spouse. They get MANY eyes on them, with oversight. They get regular meals and snacks. They get some interaction, with other residents and with activities. I could go anytime (would have to get buzzed in during off hours, even though it was IL/AL/MC) and every time I was there (varied), mom was always clean, well fed and relatively happy. Some activity she joined in, others she observed. On the off chance you didn't choose the right place, you can move her later (best to choose wisely the first time!) You can set up her room to look as much like her current room to help with "familiarity."

The thing with dementia is familiarity changes over time. Their current and recent memories fade, so they actually end up living their life years ago, so even her own place can become unfamiliar. Nine months after moving to MC, mom forgot her condo of 25 years and was focused on her mother (gone 40+ years) and her previous home. Even talking about her sister, she made reference to my cousin's child, who would be 40+ as if she were still a baby. So, mom's "time" was 40+ years ago.
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Grandcaravan Jun 17, 2021
Excellent insights to consider!
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My friends had the same happen to their mom, and after about three years of trying aides and being aides, they found a facility near her. It was like a big house with maybe six old ladies in it.

The daughter told her mom that the house was being tented for termites or rats or whatever, so she had to leave. She kept asking for a while when the tenting was going to be over, but eventually her world became her other companions. She bonded to them, and lived there for another three years until she passed.
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Reply to PeggySue2020
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I will tell you what my cousin told my uncle when he needed 24/7 care. “It isn’t affordable to hire 24/7 care at home. 24/7 care is a nursing home .”

As you know, being a caregiver 24/7 is too much for anyone. It takes a staff to do this for a patient who has ALZ.

Call your mom’s doctor and ask for a contact number and email for a social worker. The social worker can help you plan for her future. They can tell you what options are available to you.

Best wishes to you and your family.
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BurntCaregiver Jun 20, 2021
NeedHelpWithMom,

24/7 care can be cheaper and better than a nursing home if people know what they're doing when setting it up.
In my state the worst, cheapest dive of a nursing home is $12,000 a month. You can get top-shelf private aides round the clock for way less than that.
On my last job I was the primary client caregiver. I worked days. I brought in additional help when 24-hour care became necessary and was responsible for those caregivers because I vouched for them personally.
I made top dollar. $25 an hour. That's practically unheard of for an in-home caregiver. The others were paid less than me because I had more responsibility than they did. No one had a problem with it. They still made good money and would not have made that in a nursing home or with an agency.
The client got outstanding quality care that she would not have gotten in the very best nursing home.
Keeping someone at home with 24 hour care is possible and can be cheaper than a nursing home.
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Your best bet would be to hire privately because you can negotiate the pay with the caregivers. Also hire more than one caregiver.
I've been doing in-home caregiving for a long time and have never taken a live-in assignment and never will. I always tell people looking to move in a single caregiver not to do it and to think of such a situation in these terms.
How well would you perform on your job if you had to be on duty 24 hours a day 7 days a week with only your boss in the house?
The risk of client abuse is greatly increased among 'live-ins' when there's only one. It's especially high when the elder has Alzheimer's.
Advertise for two private-pay CNA's willing to split the week.
Or hire three for each shift (1st shift) (2nd shift) (3rd shift). The third shift workers can be advertised as 'Sleep Duty' and the pay is very low for that position. That means the person shows up and pretty much goes to bed. They will get up a couple times in the overnight to check on mom and maybe change a diaper. That's what they do. Don't expect one to be on a couch all night in the same room as the client either. No one decent will even consider the job if that's what the accommodations are. If the client is still mobile and literally needs someone up all night with her, a 'Sleep Duty' caregiver isn't for you.
There's also the option of hiring one 24 hour caregiver during the week and one for week-ends too.
I'll be honest with you. There will be disruption. Your mother is used to having family with her all the time. That's going to be a big change when she doesn't see familiar faces every day.
The good news is she'll get used to it. When the clients have Alzheimer's/dementia they can get used to a new face very quickly if the caregiver is nice to them.
Also, if your mom's insurance will pay for a few hours of caregiving a week, take it. That will help the caregivers you hire privately if any errands like shopping or appointments have to get done. Good luck.
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Lvnsm1826 Jun 17, 2021
Also, its good to have back up, in case one can't make it.
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Get your team hired and then you/brother continue being there for the first couple of weeks so you can see how well it goes. Allow aide to handle the tasks, but one of you on hand if mom gets scared or doesn't understand the new person in the house.

If you sleep in the living room doing night shifts - who is doing the day shift?
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It will be best to hire aides through an agency. She will most likely need somebody there 24/7. My MIL has ALZ and had 4 aides initially. They kept her on a consistent schedule. They are not allowed to give her medication (unless they have received special training) but are allowed to "remind" clients to take their medications. My MIL now has 2 live in caregivers until her adult day program opens back up. An adult day program is usually through a nursing home or private home and can save you money. Most operate Monday through Friday days.
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DrLokvig,

I disagree with you. I've been a caregiver to many people with Alzheimer's/dementia and can say that more often than not these people did not understand anything "in the moment".
A person can also be long gone even years before they take their last breath. Like my aunt. She is completely gone with dementia. She cannot walk, talk, or even feed herself. She spends her days tied in a wheelchair crapping in a diaper. She doesn't recognize her own children or family. She's been like this for two years now. The poor woman would be better off dead. The one small blessing is that she isn't aware of what she is or the place she's living in.
I agree that for many elderly people even ones not suffering from dementia, 'home' can be a lonely and isolated place. I've worked for many clients who were homebound and the only people they saw were the caregivers. They would have been better off in a care facility.
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JoAnn29 Jun 20, 2021
I agree with you. In early stages maybe they are still aware but in later stages they are just a shell. The mind is no longer there. And the indignity. I doubt if they knew what was really going on with them, they would want to live their last days on earth like that. I watched my Mom age in front of my eyes. When I looked into her eyes there was nothing there. I would not wish Dementia on my worst enemy.
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