Guest Post: Lessons Learned In Caregiving

This is a special guest post from contributor Marcela De Vivo. 

One month ago, my son had major hip surgery at a major children’s hospital in southern California. I was so pleased when he came out of surgery without any complications.  “The worst is over,” I thought.

Little did I know that the worst was about to begin.

The day after his surgery, I noticed Nathan’s vital signs were erratic. He looked a little bit too pale and sluggish. I mentioned my observations to his nurse, who called the doctor. I requested for them to draw blood and look at his numbers. The doctor did not listen. No blood was drawn, and my son was left alone to continue his “recovery”.

The following day, Nathan wouldn’t wake up. Again, I told the doctors my concern and asked for blood work, but was once again ignored. As the day continued, my son became more and more pale. His heart rate was consistently elevated, and his respiratory rate became lower and lower. Then, it happened—his oxygen saturation dropped below 70 and he turned blue. Doctors rushed in and finally they realized that something was seriously wrong. 

This time, they drew his blood. Sure enough, the results showed that he was severely anemic. He had lost a lot of blood during surgery and needed a transfusion. Fortunately he recovered and no major damage resulted. 

This experience highlights a lesson I learned long ago as a mother of a severely disabled child: advocacy is KEY. This is just one of many lessons I’ve had the opportunity to learn. I’ve learned to find ways to help my son engage with his environment, to allow him to participate with other children his age, and to speak up for him against a school district that thinks him “unteachable.” 

I’ve learned, too, that your role as a caregiver is fundamental in the physical and emotional well being of the person you are caring for. Learning to be a better caregiver can help reduce the inherent stress that comes from so great of a responsibility. A good caregiver cares about the dignity, welfare and feelings of the recipient of the care.

Here a few ideas I’d like to share with you that you can improve your experience as a caregiver, as well as the experience of the person you are caring for: 

Patient Care

Do treat your patient/loved one with respect and dignity. Although your patient/loved one may revert to childlike behavior, he/she always needs to be treated as an adult. It could be demeaning to them to be treated as somehow lesser as a result of symptoms from the illness. Treat them as you would want to be treated yourself if you were receiving the care.

 

Don't assume that the care-receiver has nothing to contribute. Again, always treat your loved one with respect. He or she may be disabled in some ways, but that is not to say that they are useless and helpless as well. Even if they are not able to do much for themselves, give them every opportunity to cooperate in their own self-care. My son is unable to speak, but is able to answer yes by blinking and no by shaking this head. Through this rudimentary method of communication, we give him as many choices as possible: do you want this shirt or that shirt? Do you want to draw with this color? Watch that movie? This simple communication technique gives him control over his environment and the opportunity to engage with us.

Do engage in physical contact. Many of the ill, infirm or elderly who need care experience less and less human contact, especially if the condition continues for a long period of time. A hug, pat on the shoulder or light touch on the arm can improve the patient/family member’s mood and outlook.

Don’t exclude the patient during conversations. Even if the primary decisions are not made by the patient, direct questions and comments should be directed to all people in the room, including the patient/family member. Don’t act like they’re invisible, especially when discussing their care. Let the patient know that they are still important and that their attention and input matter. 

Do use verbal and visual cues. Miscommunication can be result of your patient or family member being unable to hear or see you. By using both verbal and visual cues, you decrease the chance of misunderstandings. 

Do stay organized. You will reduce a lot of stress by keeping track of all the little details required to care for your parent or patient. Make sure you have a master contact list of doctors, family members, apartment managers, neighbors, etc. whose assistance you may need. Keep track of all medications and timing of medications on a calendar or spreadsheet.  

Self care 
All too often, caregivers forget to take time to nurture themselves and find the support that they need. By taking care of themselves, caregivers improve their ability to help others. 

Do reach out for help. It is also important that you have support as a caregiver as well. If you find yourself floundering emotionally or physically from the responsibility of caring for someone else, reach out to friends, family, or find a support group. Ask family and friends to help out with the care—or with the mundane everyday tasks that you may have let slide, like household chores, grocery shopping, car maintenance, etc. Hire help if you need it. 

Don't forego sleep. It’s easy to sacrifice sleep when under duress; however, sleep deprivation has serious consequences. You will be less able to solve problems and concentrate, which can make you more impatient and cross—all of which leads to poor quality caregiving. You will be a much better caregiver when well-rested. 

Do practice coping skills. Avoid additional stressors when possible and try to maintain your self-composure while under pressure (being well-rested helps you resist giving in to your temper). Consider meditation or yoga to improve your ability to cope with stress. 

Don't compare yourself to others. Every situation is different; every relationship is different. Do the best you can for your loved one by treating him or her with dignity and respect and meeting all of his or her needs. Comparing yourself to others will only increase your stress and anxiety.

I hope these tips will help improve the quality of your caregiving and the quality of your experience as a caregiver. Taking care of yourself is a must, especially in the face of so much responsibility. And remember that you must be your own—and your loved one’s—best advocate.

Marcela De Vivo is a freelance writer from Los Angeles whose writing covers several various topics, including marketing, healthcare, technology and more. As a caregiver herself, she understands how stressful it can be and incorporates meditation and yoga to manage that stress. You can read more about her journey with her son at www.prayfornathan.org.