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Ann's Caregiving Tips!

NOTE:  These are my experiences with caregivers over the last 3+ years.  These are my recommendations only.

I took care of my elderly mom full-time from 2020 until her death earlier this year.  She was diagnosed with dementia in 2017, and had two bad falls in 2019, and another in 2022.  She needed 24/7 caregivers until she passed.  Based on my experience with caregiving companies and caregivers individually, I am writing this blog to help anyone who will need caregiving for themselves or a friend or family member.  I will update this as I learn more!

First, the negative: 

I am in Northern Virginia, so will tell you which companies to avoid completely in this area.  Do not use:

• Visiting Angels - We *never* had a good experience with the company or the caregivers.
• Hablee Home Care
• Stay At Home Care - nightmare experience
• Caring For Life
• Holding Hands
• My Privilege

Some of these companies are embroiled in legal issues, unpaid debt, are under investigation by the Labor Department, and I will list some of the problems I've had over the years, which are not specific to any one company, but occur across the board.  They include:

• Caregivers threatening other caregivers
• Over charging (billed for too many hours, or overtime when there was no overtime)
• Employees of former companies parked in our driveway, to see who still works with us (just call the police)
• Caregivers show up and immediately ask for more money, or tell us they can't do some of the things we require (can't drive, for example)
• Caregivers start work, THEN tell us about their medical conditions that prevent them from doing the work.  You cannot ask about medical conditions as part of the interview, but ask if there's anything that would prevent them from doing the job.  (They may still lie to get the job.)
• Caregivers quit and leave with no notice.  In at least one case, they stole jewelry and a credit card.
• Agencies don't pay their caregivers.  I don't know how to screen for this, but you can ask the caregiver if they are happy with the agency.  Don't use the agencies listed above, as a start!

Read EVERY word of the agreement that you sign with any company, and feel free to change the agreement!  I now change every agreement I sign.  They will include "non-compete" clauses that could cost you $10k, $20k or $30k if you hire a caregiver privately.  Have an attorney look over the agreement, if you have ANY questions.  Check the Better Business Bureau for the company's rating, and get a copy of their business license.  Many of these companies don't have a BBB rating, so get a Yelp review, or get a referral.  Don't hire a company without checking them out!

Speaking of hiring privately, I've done that also.  The downside of that is that you need to keep timesheets, and file 1099 forms with your taxes.  Have a good CPA if you go that route!  The upside is that it may cost less.

What does it cost?  That varies a little, but in this area, it will cost at least $32 an hour, and time and half for overtime (over 40) and holidays, which is $48 an hour.  If you have long term care insurance, it may cover a small amount daily, so use it!  Even if your LTC covers $100 a day, that helps.  NOTE:  If you only want a caregiver for a few hours a day, it will cost more by the hour, at least $35, because caregivers want regular hours.  They prefer to work 8 hours a shift (or more), 3 or more days a week.  The only way I was able to get $32 an hour is because we have caregivers for more than 200 hours per week.  If you use live-in caregivers, it will cost less, but you will get less.

Live-in or hourly caregivers?  That depends on what your needs are.  Live-in caregivers typically get paid less, and they burn out faster than hourly caregivers.  They will need a break once a month or so, so you may have someone you don't know in your house for one weekend a month.  We tried several live-in caregivers, but found that once my stepfather and mother needed more care, we also needed 24/7 care, and hourly people were required.  We had one live-in that lasted 9 months, but had NO experience with dementia, and when mom would sundown, the caregiver would hide upstairs!  My stepfather fell several times while she was there, and ended up needed stitches because the caregiver was not around.  I'm not a fan of live-in caregivers, unless you need minimum care.

And on the topic of cost:  CHECK EVERY LINE ITEM ON EVERY INVOICE.  I have a spreadsheet that I use to check the invoices, and it has saved me a lot of money.  Thankfully someone tipped me off that one of the companies listed above was overcharging, so I have no idea how much money I lost before I started checking the invoices.

PUT CAMERAS IN THE HOME!  This is absolutely required, and I wish I had done it MUCH sooner.  Put them in every room where your loved one will be, including the bathroom.  We have had jewelry stolen by caregivers and repairmen!  We lost custom jewelry my grandmother had made a century ago, which is irreplaceable and was not appraised.  Put everything valuable in a safe, preferably NOT in the property.  If the safe has to be on the property, make sure it is attached to the wall or floor, and that the caregivers don't know where it is.

Put a smart lock on the door!  I used Sifely.  It comes with a physical key, in case the smart lock fails, and I kept copies of all physical keys in a lockbox attached to the side of the house.  There are several advantages to a smart lock:

• There is no physical key required, so keys can't be stolen and copied.
• You can give numeric codes or eKeys to family, neighbors and caregivers, which can be deleted immediately.
• The app keeps track of every person who opened the door, and notifies you in real time, if you wish.
• I can open the door remotely, in case someone gets locked out, and this has happened several times.  I can also open the door remotely for the cleaning lady if the caregivers are busy.

Next, the positive:

Once you find good caregivers, you will be able to relax.  It took me a VERY long time to find four qualified, compassionate people to take care of my mom!  We had someone working 830am-bedtime, a second day person who works noon-830pm, and an overnight person who works 830pm-830am.  Why two people during the day?  Two reasons:  1-it took two people to lift mom, and it's easier cleaning her with two people, and 2-someone needed to have their eyes on her AT ALL TIMES.  She had her last fall because she decided she could get up and walk, forgetting that she couldn't.  She fell, broke her hip and never walked again.  That last fall was the beginning of the end of her life.  Consider carefully how much help you need when choosing how many people you need.  The second day person we used doesn't have to be as good as the primary caregiver, or speak English as well.  They are just the "helper" for the primary caregiver.

This is not a racist statement, but:  Latin caregivers do a better job.  We have had caregivers who are American (never again), as well as many African countries.  I used a company that hires almost exclusively Latin people, and I was happy with all of them.  There are exceptions!  Hire people with plenty of experience in your loved one's condition.  Personally, I only look for people over 30, who are familiar with dementia, sundowning, terminal irritability, and can cook meals.  Many caregivers from other countries were nurses in their countries, but don't speak English well enough to be nurses in the US.  They have excellent training and experience, so ask about their experience.

INTERVIEW EACH CAREGIVER FIRST.  I had a lead caregiver who did this for me, and I trusted her implicitly!  She also trained new people, and managed the schedule.  She is a gem, and I hope you find someone just like her!

Certifications don't matter!  Almost all our caregivers have CNA certifications, but some are awesome, some are just terrible.  We had more than one who had never experienced sundowning, so when mom started yelling, so did the caregiver!  Totally unacceptable.  Ask for references, because many of these people will tell you they have experience to get the job, but they do not.  Talk to someone who used the caregiver before, preferably with a similar condition to your loved one.

And a personal note:  Whenever anyone says to me, repeatedly, "I have XX years of experience" ... move on!  Really good people do NOT brag about how long they have been working.  People who have to reassure themselves about their "experience" are insecure, and usually do a terrible job.  (This is generally true for every profession!)

Summary of things that I did, and suggest to you, if you must have caregivers in the house, and especially if you do not live with your loved one:

• Interview every company and every caregiver *before* they start working in your home.  Introduce the caregiver to your loved one, to make sure they get along, and can communicate.  Ask them if there is anything that would prevent them from doing the job, which may include heavy lifting.
• When interviewing companies, assume they are just telling you what you want to hear.  That is correct 99% of the time.  They will say anything to get your money.  Check BBB and Yelp for complaints against the agency.
• If you hire caregivers privately, *always* do a background check.  You can do these inexpensively online, or hire a private investigator.
• I only use caregivers that are over 30 years old, mature and experienced.  I have had many, many problems with teenagers and 20-somethings.  Ask me about this sometime, it will blow your mind!
• Do NOT pay for services in advance!  I did this once, and had to go to small claims court to get the balance back after ALL of their caregivers left with no notice.
• Review every agreement you sign carefully.  Have a lawyer review it if you don't understand it.  Add paragraphs if necessary!  I always add a paragraph stating that I will review the bill BEFORE I pay it.
• Review every invoice carefully!  Some agencies make mistakes, some overcharge intentionally.  Some don't pay their caregivers on time, or at all.
• Install cameras in the home.  I use Arlo.  Costco and Amazon sell a variety of Arlo cameras.  Put a camera in every room where your loved one may be, including the bathroom.  Accidents frequently occur in the bathroom.  Also put one outside on every door the caregivers may use.  I have nine cameras at mom's house, and am very glad that I do!  I know who is coming to the door, and I can watch mom every day I'm not there to see how she's doing.  I can even tell when she's had a TIA!  CNAs don't usually notice when there's a change in her behavior, but I do, and I always report it to the nurse.
• Never leave keys, wallets, credit cards or cash out.  Lock them away, preferably in a safe.  Make sure all valuables are out of sight and insured.  Take inventory of your valuables often!  And lock your credit online with the three credit bureaus, so if your identity is stolen, you will be protected.
• Install a safe, attached to a floor or wall.  Put your valuables in it, and don't tell the caregivers where it is.  Make sure all your valuables are appraised, in case you need to file a police report after a theft.
• Don't give physical keys to anyone.  I recommend a smart lock like Sifely for any doors used by caregivers.  You can buy them on Amazon.  If the caregiver will be there long term and you trust them, you can give them a code or an eKey, which can be deleted when the caregiver is no longer working there.  Sifely also notifies you when someone opens the door (each user gets their own code or eKey), and keeps a record of who unlocked it.
• If you don't live in the home, I recommend you have the caregiver send you a picture of all medications and supplements they give.  This has been very helpful to me!  When they make mistakes, I catch it BEFORE the pills are given.  Keep in mind that CNAs are not trained or qualified to dispense medications, so I micro-manage that myself.  I even bought a separate iPhone for this purpose, that is used by all the caregivers to communicate with me.  There is ONE text stream with all the pictures and questions, and each caregiver can review the texts from the previous shift or previous day.  I also forward pictures of rashes and wounds to the hospice nurse.  It's very useful!
• Use a medication service like Revolution Meds, which makes up packets of the meds to be given at various times during the day. For example, my mom has a "wake up" packet, a late morning packet, an evening packet and a bedtime packet.  They used to do specific times on their packets, and they may still be able to do that for you.
• I use a checklist that I have created for each day.  I print them, punch holes and put them in a binder for the caregivers to use.  These include instructions ("send a picture by text of any skin problems or wounds") and tasks ("give 1/2 Risperadone upon waking" and "reposition her with a wedge pillow every 2 hours").  There is a column for them to check off each task as it's completed.  This helps them to not forget anything, and it's especially helpful for new caregivers.
• I use a nurse weekly to check on mom's skin and other issues.  I recommend Christina with The Medical Team (and only Christina).  As a private care nurse, it costs $160 per visit.  But under hospice, it is covered by Medicare, so I ask that she visits twice weekly.  I believe that Inova offers a similar service.  I also have an excellent nurse practitioner from Allegiance - they are all experienced with geriatrics, and are excellent!  One visit costs $250, but I text them and call them with questions and for medication refills.
• I have not had this issue, but if your loved one tends to wander, use Apple AirTags or other tracking devices.  AirTags can be placed on a watch, in a wallet, on a shoe, in a coat pocket.  Put a tracking app on their phone if they use one.  If you cannot track their car with the vehicle app that came with it (my husband always knows where I am with the Tesla app), then put an AirTag or other device in the car!  Make SURE you can find them if/when they wander off.
• Does the caregiver need to use your car to take your loved one to appointments?  I don't recommend this, but if so, make sure your insurance company knows there is another driver.  You will have to give the insurance company the caregiver's driver's license information, and your insurance may increase or decrease with this additional driver.
• Speaking of driving, if you need to stop your loved one from driving, go to dmv.virginia.gov and get the MED 3 form (https://www.dmv.virginia.gov/webdoc/pdf/med3.pdf).  Print it, complete it and mail it in.  This will suspend the driver's license, and a packet of forms will be sent to your loved one.  A doctor must complete it and return it to the DMV to get the license reinstated.  Nobody will tell them that YOU sent in the form, if you don't want them to know.  This was the only way I could get my stepfather to stop driving!  He was in his 90s, had several accidents, but was too stubborn to listen, so I sent in the form and his license was suspended.  His doctor refused to fill out the form, thankfully, and the license was revoked.
• Hopefully you or someone in your family already has Power of Attorney for your loved one with ALZ or dementia, because once the symptoms progress, they will no longer be able to make legal decisions.  If there is no Living Will, Advanced Directive or General Durable Power of Attorney, do that RIGHT NOW.  I didn't find out that I was the PoA for my mom until years after they signed the papers!  But I'm very thankful that they took care of all that, because now her property is in my name as Trustee, and I have control over her investments. 
• I created a joint checking account at my credit union for mom and myself, so that I can pay her bills and disburse funds as needed.  I took her to the DMV a couple of years ago, got her a walking ID (her driver's license was revoked), and had her car titled in my name.  After a year of not using the car, I sold it to Carvana.

-updated September 2023

Ann McGrath - Health Coach (retired)