USC/Rancho Pressure Ulcer Prevention: Caregivers and Helpers

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Caregivers and helpers

It's important to have a good helper or caregiver

Lots of people have disabilities. Lots of them have a caregiver. Lots of them have a paid helper. More people than ever have a helper. A caregiver can help you do what you need to do every day. A caregiver or helper can help you to be independent. People who are independent make important choices for themselves. A caregiver can be:

Less than half of people with disabilities have a helper who is paid. A helper you pay might be a professional worker. Sometimes people pay a friend or loved one to help them. When people have a paid helper, it can cost a lot. It might cost almost half of all you spend each month. Some people have a paid helper for a few hours each day or week. Then a caregiver helps them the rest of the time.

Almost half the people who get help have two helpers. The helpers take turns caring for them.

But it can be expensive to pay a helper

Women with a spinal cord injury tend to pay for a helper. Men with a spinal cord injury tend to have a loved one taking care of them.

Dave didn't hire a helper because he didn't want a "stranger" helping him. Dave's mother was his caregiver.

Some helpers earn minimum wage. Some earn over $10 an hour. About half of the people without a helper said they couldn't pay one. They also said they didn't want a "stranger" in their home.

Do you need special medicine? Do you need special treatment? Medicare, Medicaid, MediCal and private insurance will pay for a nurse or trained helper.

The Hard Parts of Being a Caregiver

Being a caregiver can be hard

It can be hard work.
It can stir up a lot of feelings.
It might not pay much.
There might not be any pay at all.
They might need to have another job, too.
They might not have any training before they start helping out.

The Good Parts of Being a Caregiver

They can feel closer to the loved one they take care of.
The person they take care of feels grateful to them.
About half of caregivers say they grew in spirit.

What Makes a Good Caregiver or Helper?

It's important to find someone who can do the things you need them to do. The most important thing for them to do is help you avoid pressure ulcers. One out of four people say their helper is good at watching out for their health.

It's important to get along with the person who helps take care of you. Here are some examples.

Brenda's helper fixed her hair

Brenda had a helper.
- Brenda liked to go shopping with her helper.
- Brenda liked to go to the movies with her helper.
- One of her helpers fixed Brenda's hair for her.
Judy's helpers know how to keep her dress smooth when she sits on it.
- Sitting on a wrinkled dress might cause a pressure ulcer (which is what a doctor or nurse calls a pressure sore or bedsore).
Chris had the same helper for years.
- Chris became good friends with his helper.
- Chris's helper really knew a lot about his skin.
- When Chris got a red spot, his helper saw it right away.
  - It was because he knew Chris so well.
Helen had the same helper for years.
- Helen became good friends with her helper.
- Helen's helper does chores when Helen has to stay home in bed.

Your caregiver might not be able to take care of you when they get sick.

Robert's grandmother cared for him, but he worried about her

Robert's grandmother was his caregiver.
- Robert's grandmother took good care of him during the day.
- At night, Robert worried that his grandmother was too weak.
- Robert did not wake his grandmother when he needed help.
- Robert stayed in soiled diapers during the night.
  - Robert got a pressure ulcer because of this.

Helpers Who Don't Help

Sometimes a helper or home health worker can tell you things that don't help. They don't mean to hurt you. They just don't have the right ideas.

Here are some examples of helpers who didn't help.

A home health worker told Alley all she needed on a small pressure ulcer was a DuoDERM® patch, and not to change the dressing. This wasn't the right idea. A few days later, Alley had an infection.
Another home health worker ordered a mattress for Mitch, but she ordered the wrong kind.

Danger Signs of the Wrong Helper

Some caregivers or helpers are not right for you.

You might not get along with them.
Sometimes a helper does not show up on time.
They might quit all of a sudden.
They might not be honest.

Abuse and Neglect

Sometimes helpers can be abusive or neglectful

One out of five people is afraid that a helper might abuse them (that is, hurt them on purpose). They are afraid a helper might neglect them (that is, not take care of them). Sadly, many people have been abused at least once in the past.

The most common times when people are abused are:

When the caregiver is new.
When the caregiver works more than 40 hours a week.
When the caregiver is too tired.
When the person they are helping didn't have a lot of money.

The most common kind of abuse is verbal, that is, words that are spoken or yelled.

Here are some examples of helpers who did a bad job. They did not hurt the people they were taking care of, but they did other bad things.

Ken had a helper who said he was Christian.
- The man lied to Ken.
- The man smoked crack in Ken's house.
- The man stole from Ken.
- The man quit all of a sudden.
Helen had a helper who stole jewelry from her.
- The helper Helen has now is really good.

A caregiver might need to touch your body. They might see you naked so they can help you with things like:

A caregiver can help you take a bath

Checking your skin for a pressure ulcer.
Taking a bath.
Going to the bathroom.
Getting dressed.

That's okay for them to do. Let them do their job. BUT!

Tell someone right away when a caregiver or helper touches you in a way you don't like!
Tell them to stop!
Call the police if they keep touching you in a private place after you say to stop!

One in four people with disabilities has been neglected. It is very sad. It isn't fair.

Rachel's helper needed to give her a clean diaper.
- Rachel's helper did not do it.
- Rachel's helper put paper towels in the diaper.
- Rachel got a bad pressure ulcer.

Speak up for yourself when someone is hurting you. Speak up for yourself when someone is neglecting you. Right away, tell:

Your doctor.
Your case worker.
Your partner.
People in your family.
Friends.

Call the police if a helper breaks the law!

Get away from the person who hurt you!

Did your helper hurt you? Fire them!
Does the person have a key to your home? Get it back!

Get a friend or family member to help you. They can help you when you are afraid of the person who hurt you! The police can help you, too.

You can also call the police if the helper broke the law.

Alley's friend Lucy died.
Lucy's helper stole from Lucy's home.
Alley went to the police.
Alley and the police got Lucy's stuff back from the helper.

How to Hire a Helper

It's important to have a plan for finding a good helper

Remember that you will be the employer of your helper. Try to be a good employer.
Do you want your partner, a friend, or a loved one to be your caregiver?
Do you want to hire a helper instead?
There is a booklet you can get for free on the Internet that might help. It is called "Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury." Debra L. Burdsall wrote the booklet. She is an occupational therapist (OT) at the Santa Clara Valley Medical Center's Spinal Cord Injury Project in California. The booklet is in PDF format.
Be sure to talk to the helper before you hire them - this is called an interview (IN-tur-vyu). Ask them if they know how to help you with the things you need help with. Ask them if they know about pressure ulcers.
Can you phone or write a letter to the person the helper worked for before? Does the last person they worked for think they did a good job?
Make sure you get along with the helper. Are they friendly, or grumpy?
Is your helper a good person?
Ask a friend or loved one to meet the helper. Do they think the helper is a good person?
Remember that it is sometimes hard to be a helper. The helper might need time off to see their family, or to go to another job. Be a good employer by respecting their needs.
If you feel unhappy with your helper, talk to them about the problem. Speak up for yourself.
If that doesn't help, it's okay to find someone else to be your helper.
Plan with your caregiver about what to do if they get sick or need to rest. Your doctor might be able to tell you where to find respite care (that is, a service that helps by taking care of you when your caregiver needs to take a break).

Advice from Alma

Alma interviews people who want to be her helper. She says she can teach them what to do to help her. Alma thinks it is more important to make sure they are honest and she can trust them. She also makes sure that she gets along with them. Alma says:

"You have to get along. You spend so much time together, and it really is a personality match. So that is first, because after that, everything else falls into place. But if that is not in order, then you just have problems all they way."

Because Alma is careful, she has helpers she really likes. They take very good care of her. Alma has stayed healthy and avoided pressure ulcers.

If You Use the Internet...

If you like to use your computer to learn more about things, try these websites with information about "Caregivers and Helpers":

Educational Brochures
Craig Hospital
www.craighospital.org/
SCI/educationalTracts.asp
This page has links to five articles about caregivers and helpers. Two articles have tips for people who give care to loved ones. Craig is a good rehabilitation hospital in Denver, Colorado.
Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury
Spinal Cord Injury Project at Santa Clara Valley Medical Center
www.projectenable.org/pca.pdf
This booklet has lots of tips for finding a good helper. It also has tips about how to pay them. It is from the Santa Clara Valley Medical Center's Spinal Cord Injury Project in California. It is in PDF format.
Personal care services help you remain at home
iCan!
www.icanonline.net/news/fullpage.cfm?articleid=20C49CAA-701E-4C8B-998CD011CBBEC03F
This page tells how you can look for assistance to pay for a caregiver or helper. A partner, loved one or friend can be paid to help you. This article is from 2001. iCan! was founded by Heidi Van Arnem, a woman who was paralyzed at age 16 when she was shot in the neck.
Spinal Cord Injury Video Access
Spinal Cord Injury Network International
www.spinalcordinjury.org/videos.htm
This group in Santa Rosa, California, lends videos for free. The videos are mailed out. They have videos on many subjects. Some of their videos are about caregivers and helpers.
Tips to finding an approved home health care agency
iCan!
www.icanonline.net/news/fullpage.cfm?articleid=27522A6E-8000-4883-82AFED5B53DC0CA8
This page tells how to find a good home health agency.
Who is the SCI Caregiver?
Spinal Cord Injury Information Network
www.spinalcord.uab.edu/show.asp?durki=22479
This article has tips for caregivers who are feeling stressed out. This website is from the University of Alabama at Birmingham.