Tips for creating a successful

caregiving relationship for all

parties involved

Compiled by Susan Koller

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About the Compiler
My name is Susan Koller and I'm 36 years old. I have cerebral
palsy and have needed help from caregivers to do all of my
daily living activities all my life. And most recently, staff in a
long-term care facility. The relationship an individual has with
their caregiver is one of the most important relationships in
their lives because, in many cases, an individual would not be
able to live without their caregivers. However, the relationship
between a caregiver and their client can also be very complex. I
have used my extensive experience with caregivers to create
this booklet that contains tips for everyone involved to have
better relationships and make a difficult job easier. I have also
included tips that I have received from caregivers and other
individuals with disabilities. I have also included personal
anecdotes in italics.

I am a self-advocate trainee in the Cincinnati Leadership

Education in Neurodevelopmental and Related Disabilities
(LEND) program. The Cincinnati LEND program is part of a
network of 52 LEND programs across the country funded by
the Maternal & Child Health Bureau. LEND is a graduate-
level training program, and all the trainees are dedicated to the
program's mission of improving the lives of infants, children
and adolescents with developmental disabilities. Trainees come

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from a wide variety of healthcare disciplines along with family
and self-advocates. The goals of LEND are to increase the
trainees’ knowledge of developmental disabilities, to train them
to be leaders in their disciplines, engage in family centered
care, work effectively with individuals in other disciplines and
to advocate for individuals with developmental disabilities. As
a self-advocate, I have to do a personal project instead of
clinical hours that the medical trainees complete. The caregiver
shortage, often called the Direct Support Professional shortage,
has impacted my life greatly. I decided to focus on this problem
for my personal project, and that is how this booklet came
about.

Tips for Caregivers in Any Work Setting

• There is no universal way to care for all clients. You should

work with each individual to develop a specific care routine.

• When possible, it is always better to meet the client before

you start working to learn about them and go over their care

routine. This takes away the first day jitters,

• It's very important to be flexible in how you provide care.

The client may know of a more effective way to get certain task

done, so listen to their suggestions. However, always remember

that safety is paramount.

• If you are being trained by another caregiver, do not solely

pay attention to what the aide says. If the client can

communicate, make sure to get their opinion regarding the

training, as they generally know their care routine better than

anyone else.

• Rushing through a care routine can lead to accidents. Always

choose gentleness over efficiency to ensure the safety of your

client.

• Respect your client's wishes when it comes to phone usage.

Never use your phone when transferring a client, as this could

result in a dangerous situation.

• Make sure you are comfortable with all your client’s

equipment, such as Hoyer Lifts. For both safety and comfort,

never leave your client unattended if they are in a piece of

equipment.

• If you have to call a shift off, give the client, agency, or

facility as much notice as possible. However, everyone

understands that there are certain emergencies that sometimes

make this hard.

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• You and the client should work together to find and train a

reliable backup who can work your shifts if needed.

• Always call the appropriate person to let them know if you

are running late.

• Always give at least two weeks' notice before resigning your

position. A month's notice is preferable.

• Whether it is just a room in a facility or an entire house,

respect the client’s space and privacy. Always knock and wait

for your client to answer before entering their space.

• Limit private conversations with other caregivers while

completing a care routine. When my caregivers converse in

front of me, and I don't know whether to join in the conversation

or pretend like I not there.

• Don't suggest a client wear a certain item of clothing simply

because it is easier for you to put on the client. Let the client

wear what they want unless it is impossible to put a certain

item of clothing on them.

• Respect your client's right and never treat the client like a

child. I had a caregiver who took off my glasses without asking

while I was in the middle of watching TV.

• Find out as much about your client as possible before you

start working.

• Asking questions is not a sign of stupidity, it is a sign of

common sense and caring.

Tips for Caregivers Working in a Facility:

• Introduce yourself to all the residents you will be working

with at the beginning of the shift, as it can be stressful for a

client to not know who is taking care of them.

• Always say “good morning” when you first walk into the

room

• When answering a call light, it is better to ask “How may I

help you?” rather than just responding “Yes?”

• Do not talk about residents in front of them or in front of

other residents. It's uncomfortable and against the law.

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Tips for Clients:
• Always be respectful to your caregiver. It is very important

for you to recognize that being a caregiver is not an easy job.

• Have a list of duties and expectations printed out to give to

your caregiver the first time you meet to help set expectations.

Make sure the caregiver accepts and understands those

expectations before you begin working together.

• Self-advocate by making your needs known instead of

expecting your caregiver to guess. My mom has told me plenty

of times that she is not a mind reader.

• Be consistent with your caregiver regarding expectations.

Changing expectations as you go can cause confusion.

• Be flexible and willing to change your care routine to help the

caregiver, unless it is something that makes you uncomfortable

or that you feel lowers your standard of care. An example of

lowering your standard of care is using a bed pan instead of

sitting on the toilet.

• Be mindful of your caregivers’ time. If they are there to take

care of you, do not make them wait while you finish a task.

Also, if you need something done before the caregiver leaves,

do not wait in until the last minute to ask them.

• Respect your caregivers’ abilities. This may be something as

simple as understanding that your caregiver is not able to do

the hairstyle that you want, or it could be as complicated as

your caregiver not being able to do a preferred transfer. This is

when you have to decide what is really important to you.

• Give the caregiver time to complete one task before asking

them to do another.

• Always have supplies that a caregiver will need to do your

care routine, such as gloves. Be sure to know where these

supplies are.

• Provide a safe and clean environment for your caregivers to

work in.

• Tell your caregiver as soon as possible if you need to change

times of care routines due to an unexpected event. Also, if your

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plans change and the caregiver needs to come to a different

location, give early notification and specify the new location.

• Be patient. Do not expect your caregiver to be there the

instant you need something. This is particularly true in any

long-term care facility where there are a lot of residents who

need care.

• If possible, it is always better to work with more than one

caregiver. If your only caregiver unexpectedly cannot do the

job, you could be left without any care.

• Always give your caregiver as much relevant information as

possible I have had caregivers who did not know my diagnosis

before they started working with me. Knowing all important

information can make a big difference.

• Always thank your caregiver and be appreciative of the work

they do.

• Always say thank you and be appreciative of the work they

do.
Tips for Agency Administrators:

• Always have someone available to cover an employee’s shift,

even if it means one of the office staff has to go out and cover

the shift. A client cannot be left without care.

• All agencies must have a 24-hour number that clients can call

with questions or concerns. This number should be answered

at all times. I can't count the times I called the 24/7 call line and

no one has answered.

• Give your employees as much information about a client as

possible before they start working, such as if the client uses lifts

or has an animal in the house. I have asked the agencies many

times to tell the caregivers that I have a in-home service dog, but

the message never gets passed along.

• Give your employee good directions to the client’s house.

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• Send your employees out to train with the client before they

actually start working together, if possible.

• Make sure all pertinent office staff knows what is going on

with each client. Sometimes I have called up and talked to one

scheduler and then called back and talked to another scheduler

who knew nothing about my previous conversation.

• Give your employees regularly scheduled raises based on

experience and performance. Do not wait until you need your

employees to cover an emergency shift to give them a raise.

• Agencies should always pay mileage and for any training that

employees are required to complete.

• Provide your employees with necessary supplies even though

many clients may already have them.

• Check in with your clients on a regular basis to ensure they

are satisfied with the services your agency is providing.

• Make sure you notify clients as soon as possible when there is

a change in their caregiving situation.

Tips for Administrators of Long-Term Care Facilities

• Always have someone who can answer a resident's call light if

their aide is busy. Sometimes I have had to wait a long time to go

to the bathroom because my aide was giving someone else a

shower.

• Make sure to give the aides and the residents a realistic

picture of what it is like to work and live there. My own

expectations were not realistic when I moved into a long-term

care facility.

Tips for All Parties Involved

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• Try to keep your relationship as much like a business

relationship as you can. You can be close with your client, but

everyone should always be professional.

• There are some conversations should be avoided to maintain

professionalism, such as sharing details about your sex life.

• It is generally not a good idea for the client or the client's

family/friends to employ the caregiver to do tasks unrelated to

care. If there is an issue with the outside job, it could cause

strain on the relationship between the client and the caregiver.

My neighbors once asked my caregivers to dog sit for them. It did

not go well, and there was a strain on relationships all the way

around.

• If any of the parties are unhappy about things regarding care

or the work environment, they should bring up those concerns

immediately and talk about them respectfully

• The bottom line in any caregiving relationship is each party

must be open, honest, and have respect for the other.