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.
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.
I have the Caregivers on 12 hr shifts.
You might even consider a Live in.In.
Ot's less expensive but my Dad was too needy and I thought he would drive one person crazy so for now. I'm having Caregivers do 12 hr shifts.
Prayers
I ask because the ILs have two caregivers. They do not have dementia, and in fact one is now well enough to drive, but they enjoy having a personal assistant (family member) during the day and the insurance of having an overnight aide at night.
It's costing them over $170K, and at this point it's probably a cake job as far as senior care goes, right. No dementia, only minor (and dissipating) incontinence at this point, same with fall risk.
But it's still $170K.
If those guys do get memory issues, especially combined with fecal incontinence, they wouldn't get that for that price. Which is a lot.
So where did you find these people?
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.
A couple of things:
A person with Alzheimer's may not "remember" facts but she still "understands" in the moment and she has feelings just like you.
And she is NOT gone until after her last breath. She's in a different space and at times, in a different reality, but she's still capable of enjoying life.
A facility may be a better environment for her, depending on the facility. I recommend to everyone to do their homework. These places can be day or night.
What to look for?
Aside from positive ratings from your state's health dept:
Comprehensive staff training (Eden, Montessori, or PAC (Positive Approaches to Care)
Resident-centered care
If you sleep in the living room doing night shifts - who is doing the day shift?
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.
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.
It doesn't have to cost $10,000 a month if they hire privately because they can negotiate the wages with the caregivers.
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.
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.
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.
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.
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.