Mental health and caregivers

Posted by Nurse Linda in Life After Paralysis on May 15, 2019 # Health, Caregiving

Individuals who have spinal cord injury especially at higher levels often rely on others to provide basic care and household activities. People who provide care typically are family members, sometimes volunteers and often are paid professionals. It is up to you to be the leader of your care by knowing what services you need and how you would like them delivered.

Most often, people who provide care work out beautifully. A strong relationship builds over time. Eventually, little has to be discussed about your needs as you both get to know each other so well. One of the stumbling blocks to a healthy relationship can be due to mental health issues. This can range from role confusion to abuse. It is important that you recognize mental health issues within yourself, your family, friends and even people who provide care for you. People that you interact with have an extreme influence on your well-being. Maintaining an open working relationship is important to your success as an individual.

First, look at your own behavior. If you want to maintain relationships with others in your family, friends, social circle or caretaker, you need to recognize your own personal strengths and weaknesses. Some people are more outgoing and upfront with their needs while most others are a bit shy in expressing what they require.

You will want to be very specific about what care needs to be provided for you and how you want it accomplished. For instance, having your bowel program prior to your shower is a practical decision. You might want to explain to your caregiver why you want things organized to meet your needs. Otherwise, the caregiver is going to provide care the way they prefer. Caring for your bodily needs is a decision that should be yours and respected. Of course, your caregiver might have a suggestion which will work to your advantage. Be ready to negotiate but never relinquish personal control of your care.

Most relationship difficulties begin with a power struggle. It should be made clear from the beginning that you are in control of what happens to your body. This is a little easier to express to an outside person. It is more of a challenge when the person caring for you also loves you. Family members may be more willing to take charge on your behalf. Sometimes family members take charge because the person with the spinal cord injury does not.

A good transition time for taking responsibility for yourself is when you leave the rehabilitation setting. It is your body, direct whoever is caring for you in what you would like done for you. This time may have already passed but it is not too late. Have a frank discussion with your personal care provider about you being responsible for yourself. Open the door to the transition. It might take some time for both you and your care provider(s) to adjust. If this is not happening, it is time to seek outside help with a counselor, psychologist or social worker to navigate through the situation.

Mental health issues can happen to you, but they can also occur in people that are around you like your family members or people that are taking care of you. Not all issues are due to mental health concerns but there are some red flags to notice. As a person who depends upon others for care, you are also depending on the same people for your safety both personal and medically.

Sometimes, more difficult issues will arise. Long term care can be an issue for the individual with a chronic condition as well as for family members and care providers. If you notice a change in a person’s behavior (including your own) or perhaps the person you are interacting with has some of the following characteristics, a mental health problem could be brewing or present.

Know your care needs. Never ignore your healthcare needs or assign them to someone else. Know what medications you take, what they are for, what the medication looks like, the side effects and how you feel when you take them. If you are taking pain medication, you know how it feels when you take that drug into your body. If you are not getting the same feeling and less relief, you might not be getting your correct medication. Notice if the pill shape or color has changed. There will be a notice on your prescription bottle if the distributor has changed the form of the medication.

Know when you should be catheterized and how to do it. The same goes for your bowel program and pressure releases. If you know the steps in these processes, you will know if someone is touching you inappropriately, even if you don’t feel it, you can see or hear it.

Become comfortable with your care and interactions with those who are caring for you. If you feel a person is not being appropriate in their behavior toward you or others decide for you, your action should be to confront or report. Sometimes confronting an individual about their behavior can be detrimental to your health if they, in return, withhold care or abuse you in some other way.

Be selective about confrontation. You might want to handle the situation when you have a third party there for protection. You should not confront someone when you are alone with them if you feel they could become abusive or dangerous, but you might mention your concern for them if the issue is not volatile such as if they are not sleeping well or coming to work well rested.

If you are feeling uncomfortable or if you feel that someone is not providing the interactions that you need, you must tell someone who can intervene. That might be your family, healthcare professional or the individual’s supervisor.

Keep a group of safe and close personal family and friends. If you have issues, call on your safety squad. You might have a code word to use if you need to call them in front of the person who concerns you. Rather than saying I am in desperate need of your help, ask them to come using your code word. A good code is to ask them to bring a piece of their family recipe of chocolate pie. It makes your request appear unique to that person and will keep you safe until help arrives.

Being able to identify an abusive relationship is not easy. Some people have a gruff manner or find something funny that you would not appreciate. It is not an abusive relationship if your personalities just don’t match. If this happens, it is best to find another care provider as life is long when you are miserable with someone. If you are not sure if you are being abused, ask your healthcare provider for intervention.

You should not tolerate abuse of any kind. You should not be tormented, ever. Be aware if someone is constantly criticizing you or creating physical harm. Your body should not be used for any purpose other than what you determine. There should not be any withholding of physical care, medication or food, and fluid.

Verbal abuse consists of yelling at someone, verbally correcting them, putting you down. It is a way of controlling a person through words. It may be forceful and obvious but can also be a constant undertone that is not easily noticed.

Psychological or emotional abuse can be a bit harder to pinpoint. It is the most common abuse situation. This is when a person manipulates another through threats. Gaslighting or making you believe your thinking is muddled when it is not is another technique. Emotional abuse includes name-calling, not letting you make decisions, keeping you from sleep and putting you down. A form of psychological abuse for a person with SCI is when your care provider isolates you from family and friends or does not allow you to visit with people when the care provider is not present.

Physical abuse includes harm to your body. It includes sexual abuse. This can occur as domestic violence with a spouse, family member or care provider. It can also occur as workplace aggression.

Remember, the caregiver is there to help you. If the caregiver is a family member, you will need to coordinate with their life for an effective relationship. If the caregiver is a person who is doing the caregiving as a paid job, they should be expected to provide care to you while working and not doing other things, like sleeping. You should develop an effective working relationship. Monitor yourself for your demands. Model the way you want to be treated. Be kind and respectful. Nurse Linda

Pediatric Consideration: Children do not always have the words for abuse as they do not have the life experiences of adults. Adolescents might not want to report abuse if peer pressure is great. Noticing a change in the behavior of your child might be the warning sign that something is happening.

Know what is going on in the life of your child. Keep open communication with them. Know where and when they should be somewhere. Expectations for children should be toward independence but that does not release you from the responsibility of knowing when and what your child should and should not be doing.

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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.