​Working with a Professional Caregiver

Posted by Nurse Linda in Life After Paralysis on July 20, 2020 # Caregiving

Most individuals with spinal cord injury that need support will have a family member or close friend assist with personal needs. Some people will be able to hire a professional caregiver for assistance. If you have a higher-level injury, your payor may allow a part time assistance or occasionally full-time caregivers. Others will hire a caregiver using their personal funds.

Even though you might be able to obtain professional caregivers through a payor source, do not think the professional caregiver will walk in the door and have a clue about the needs of the situation. Be sure to instruct the new caregiver to ensure they have the skills needed and that they understand the scheduling of activities. If you are just home from the rehabilitation hospital, use your discharge manual as a teaching guide.Man and woman reading

Talk to your caregiver to set the standard of care you wish to receive. A professional agency will work with you until you find a person that can provide your care needs as well as matching your personality. The caregiver is assisting you to do things that you might not be able to do efficiently on your own. If an assigned caregiver is unable to work a shift, an alternate will be sent from the agency. Keep the agency number handy. If you do not match with the first person sent, they can send another person the next time.

Hiring your own caregiver is a route many people who require assistance may take. Finding an agency person that is inline with your personality can lead to wanting to hire them directly, so they will always be the person who comes to help you. There is a wait period if you personally hire a caregiver from an agency. The agency has invested in the caregiver, so they do not want to lose that person. Generally, there is a six months wait between the caregiver coming from the agency to private hire is required. During this time, the caregiver cannot work for you.

When you hire your own caregiver, you need to make arrangements for someone to help if the caregiver cannot come. Perhaps they develop a communicable illness like a cold or flu, a snow day or lack childcare for the day. A back up plan should be in place incase of this type of emergency.

If you are going to hire a caregiver yourself, always hire with the understanding that the position is not permanent for two weeks, two months or longer for a ‘getting to know’ you period. If the arrangement does not work out, this is a way that you can say it just isn’t working rather than having to fire someone. Be sure to have this in writing as well as all the duties you want the professional caregiver to perform. Clarity in the responsibilities of the position lets everyone know what is expected. An agency will provide the professional caregiver with a job description. This is standard business practice.

People from your community might volunteer to help you. This is usually more common for individuals who are injured on the job or a healthcare professional in your neighborhood might want to help. Sometimes church groups will volunteer. Volunteers need to have education about your physical needs as appropriate. For example, you need to have someone transfer you who knows what they are doing for your safety and theirs.

If people want to help and you are comfortable with them, let them help. It makes them feel good. Be clear about what you want them to do for you. If someone does not have healthcare experience, perhaps they can start with house cleaning, shopping and laundry. They might not even be aware of the personal needs of an individual with spinal cord injury. As time goes by, you will be able to bring them in to more hands-on personal activities as you both feel comfortable.

When accepting help for your loved one, decide ahead of time what you will do when the other person is there. You can be present in the room, be in and out or even leave the house but have a plan for yourself to be occupied. It can be an adjustment to get used to someone new being in your home. It is also an adjustment for you to become occupied with work, housecleaning or even watching TV while someone is there. However, this is that person’s job. Don’t pay someone to watch you do all the activities.

Set a plan for the new person to learn personal care. Watch them do it so you know they are providing what is needed. Someone might come with experience in catheterization but may not know clean technique. They may not know the specifics of a dressing change or understand how a suprapubic catheter works or turning schedules. You don’t want to hear, ‘they were sleeping so I did not turn them.’

For family members that are working with a professional caregiver, do not leave until you feel you can trust them with personal care and safety. The first time you leave will be extremely difficult for you. Prepare yourself that you might feel a little lost the first few times you are able to do something on your own. Always keep you phone handy, so you are reachable. This can make you feel more secure.

Set boundaries as to who is the boss. If the hired person decides to rearrange the furniture or even the drawers, listen but then you and your family member make the decision. This is the home of the person being cared for and their family. The hired person might have a good idea that will work better but you might find it easier to do the same activity in a different way. Make it convenient for you.

Check on behaviors of the hired care provider. Are they kind to you? Are they safe? Do they abuse in any way, verbally, psychologically, emotionally, financially, sexually, physically? Do they make you wait until they ‘feel’ like filling your request? You should not have to provide constant praise to the caregiver. Talk to family members alone about how they feel the new caregiver is doing. Handle difficult situations with the caregiver including your family or without, however you want your family to be involved. You are hiring the caregiver for a job. You do not need to be their therapist. This is a business deal not a contracted friendship.

Be sure to have a contract stating the responsibilities of the professional caregiver. For example, doing the bowel program and cleaning up. Will they be doing laundry on down times or housecleaning? Will a meal be provided? Some will do physical care and nothing else. Others will take on responsibilities to round out their day. An agency will have a standardized contract, which you can ask to be altered if there is something specific that needs to be done. If you hire someone personally, be sure to include everything that needs to be accomplished by the professional caregiver.

Unfortunately, this must be said. Be wise with your valuables. Agencies will have employees that are bonded and insured. However, not everyone is completely honest. Nor is everyone a thief. Some people will shop for you but review the receipt and billing statement to be sure other things have not been added, like items or gas money if that is not part of your contract. Put away expensive jewelry or other items that can be easily overlooked for a while.

As individuals age, both the individual with spinal cord injury and the family members who provide care, might need additional assistance. If you find your self in a bind or an inability to accomplish the activities of daily living, speak with your health professional and insurance case manager to see if there is any adaptive equipment or caregiver services that can be added. This can work to your advantage so always check.

Over time, review how things are going. It can be a challenge to let another person into your home life. We expect to be with others in the workplace and with friends but not at home. Most professional caregivers become like family members. Most people have excellent experiences. The help is truly wonderful for providing a balance in family lives.

To the professional caregiver, you might be comfortable with your skills and abilities in working with individuals with spinal cord injury and their families. Perhaps you have worked in this type of situation previously. But remember your new family has not. They might be anxious. Your professionalism and experience will help the family adjust. Nurse Linda

Pediatric Consideration: Leaving a child with an unknown caregiver is probably one of the most frightening experiences of a parent. Adding special needs to the equation is an extra stress. If possible, try to be present with the child and caregiver in the home until you are comfortable with the situation. You can meet a new caregiver with successful matching of personalities but still be sure to stay for a while to see how things work out over time. Unannounced pop-ins can also be of benefit.

Many children, parents and caregivers find their relationships to be very successful. Professional caregivers choose to work with children because it is a rewarding experience for them as well as for the child. The professional caregiver will be helpful in providing suggestions about techniques and pediatric equipment. A strong bond and relationship can develop between the child, parent and caregiver. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.