Some side effects are predicted by medical teams, while others are not. Patients bring personalities, physical sensitivities, strengths, and weaknesses that impact their reactions to challenges, medication, pain, and treatment. While we, caregivers, twist and turn to adjust to their side effects, we are sent down a rabbit hole of our own.
Many of us find ourselves in a position of helping our loved one agree to receive interventions with the goals of healing and helping. Our positive intentions can be shoved aside and replaced by guilt when we see side effects ravage a person’s personality, reactions, and well-being. We question whether we should have encouraged him to go down this course of treatment. We worry that she may never be like her old self. We ache as he gasps in pain. Doubt clouds our thoughts and we wonder if we said the right thing. The turmoil churns within, yet we stoically remain positive not wanting our own uncertainty to be seen.
Who is This Person?
My mom turned into someone I didn’t recognize. She acted strange and did odd things. We didn’t know if it was from the cancer, or from not taking her antidepressants and anxiety medication, or if it was the methadone and morphine she was taking.–RG
Illnesses, side effects, and medication, as well as personality, affect how the patient reacts to what they are experiencing. These aspects, on top of the roles we have with the patient, complicate our feelings and reactions.
Our loved ones’ reactions can change our relationship with them. A colleague shared that she feels so embarrassed when her mom, who has dementia, acts confrontational, insensitive, and abrupt with the staff who care for her. “I cringe at the way she barks orders, calls the aides stupid, and complains. I worry that the staff will not care for her as carefully because she is so difficult. I probably go overboard, but once a month I bring lunch in for the staff, hoping my appreciation will mitigate the impact of my mom’s behavior.”
My son is a good person, but when he experiences paranoid delusional thinking, I’m afraid he might hurt me.–MCM
My mom was not the ideal patient. When things didn’t go as explained (for example, at first she was told she didn’t need radiation, but then she did) she would get angry and argumentative. Dealing with losing her hair, getting sick from the chemo, her nails turning black, her appetite changing were all very difficult. She gained a crazy amount of weight from the steroids they would pump into her two days before each chemo treatment. We just had to remain positive and maintain the take-charge attitude so that she wouldn’t feel defeated.–KW
Kathy’s Experience I’m Not Taking This Anymore
The hardest part for me was when my brother would get angry. He knew he could take it out on us and we’d still be there for him. Lord knows he had a right to be angry at the disruption and total change to his life and the ultimate knowledge that his life was going to be cut short. However, it was hard to take sometimes when we felt like we had been doing a lot for him. One time, he chewed me out on the phone. I thought, “I am not taking this anymore,” and gave it right back to him. He hung up on me and then called me back later to say he was sorry. He had just found out he was out of remission again. I felt about two inches tall. I realized it was important to have time to vent feelings away from him. It was so dark and depressing.
You Know Them Best
It’s important to realize that you have information about your loved one the medical team does not. If you observe changes in personality and reactions, it is likely that the medical team isn’t aware they are acting differently from their usual demeanor. Therefore, it is important to share what you are observing so the team can incorporate this information into their understanding and make needed recommendations. Remember, you know your loved one best.
Medication Side Effects
Have you seen medication commercials that promise to help with a condition, and then a long list of possible negative reactions fills the screen? Possible side effects run the gamut from slight nausea to seizures and death. There’s always a disclaimer at the end that indicates such side effects are rare — but how can we know if our loved one will be affected? When deciding what to do, most of us follow the medical team’s advice and get the needed prescriptions filled.
My wife was on high doses of steroids during some of her treatment. I could tell which day of the week it was by her reactions. The steroids were administered on Wednesdays, so Thursday through Sunday were punctuated by her heightened reactions, weepiness, and anxiety. As Monday rolled around, her mood settled back to her usual self, only to swing to extremes again on Thursday, week after week.–BS
Michele’s experience illustrates how we can be taken by surprise by the side effects a loved one can encounter.
Michele’s Experience A Learning Curve
When preparing to take care of my husband after back surgery, I never gave a second thought to the medications he would use to “get ahead of the pain,” enabling healing to occur. What I soon came to find out was that the side effects of them had a major impact on my delivery of caretaking. My husband, who is normally an active, intelligent, clear thinking, independent and positive person, became confused, dazed, lethargic, and prone to anxiety and imagined fears. This experience was frightening, confusing, and new to me. There were many times when he experienced hallucinations.
(Husband) “I had a terrible night last night. I spent the night crawling around on the floor trying to get away from the people who were trying to get into our house. Didn’t you hear them? I closed the bedroom door and tried to lock it, but I couldn’t figure out how.”
Being the caretaker 24/7 took its toll. What helped me through the process were periodic visits from family members who would relieve me, allowing me to get out, do errands, and just clear my head. That was crucial. It was a huge learning curve.
If you observe unexpected reactions from medication, it is essential to let the prescribing doctor know. Underscore that the behaviors and reactions you are seeing are different from how he usually handles medication and/or situations. You should receive an explanation from the physician as to why the change is happening. The doctor may also adjust the medication dosage or change the actual medication to lessen the negative side effects.
It’s Their Decision
I didn’t want my mother to suffer unnecessarily at the end of her life. I think it’s important to give people their own choices if they are mentally capable. I hope I can carry this through as my husband and I age.–MR
Some of us, having the best intentions, want to make decisions for our loved one. We want to make decisions we think will help the person heal and feel better. However, it is not our decision to make. As long as the patient is able (and an adult), it is their decision to make. They need a sense of control in an out-of-control situation in which their bodies have been assaulted.
I really wanted to help my sister, but she wanted to handle it by herself. Supporting her the way she wanted was what I learned to do.–KBG
My mom was diagnosed with Stage 4 non-small cell adenocarcinoma (lung cancer). One of my most challenging days was when she decided she wasn’t going to do any more chemo… I had no idea that was coming. As upset as I was, it was her decision to make.–AR
Featured image courtesy of ELG21 on Pixabay.
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