There are some illnesses that are more difficult to manage and handle than others. Aside from the issues that belong in the dementia space, the ones that stand out are cardiac issues and strokes. For this article, we spoke to a young man (NV), who had to care for and manage his father’s debilitating condition (as a result of a stroke) for over a decade, at home. His answers to our questions highlights the difficulties, constraints and emotional toll that caring for a stroke patient costs the caregiver.
Q: Did you have to monitor symptoms and administer complex medication regimens?
NV: No. My father had suffered a semi-paralytic stroke on the left side of the body in 2004. He was already suffering from late onset diabetes and high BP. Early on, we a made point of encouraging him to be self-reliant with things he could do, like keep track of medications, etc.
Q: Did you have to help with personal care?
NV: In the initial months after the stroke, I helped with daily care including visits to the toilet. He had no movement or control on his left side, and thus normal personal chores became difficult for him.
Q: Did you have to provide emotional support? Was it difficult?
NV: Yes and no. It is difficult to say. Because of the closeness that we share as father and son, yes, I did give him emotional support. But there were days, when because of the condition that he was in, possibly, his demands were unreasonable. Sometimes I would lose my temper, I might have put him down and not paid attention in such instances. This is where my siblings and my mother come in. I believe that as a whole family, we were able to provide emotional support.
Q: Did you have to manage difficult behavior such as wandering out of the house, aggression and hallucinations?
NV: He did not suffer any such symptoms.
Q: What about fatigue? Did your father suffer from fatigue?
NV: It was a constant fight with fatigue. Looking back at my father’s experience, I could tell when he was prone to fatigue. In stroke patients, you tend to use other parts of the unaffected brain to move around; Short walks, visits to family, etc., which had a lot of movement involved, tended to drain him not just physically but also mentally.
Q: Did you have to manage his finances?
NV: Finances were always tough. Before his stroke, he was the primary breadwinner. After that, it was me and then my brother. And much later even my sister started pitching in.
Q: Did you have to coordinate his care?
NV: As a family, we never really talked about it. With my mother as primary caregiver, we tended to, without a word spoken, swap work and help.
Q: Did you, as his caregiver, suffer from disturbed sleep, back, shoulder or neck pain, headaches, stomach and digestive problems?
NV: Back problems and digestive problems were common.
Q: Did he get skin disorders such as hives, eczema, psoriasis, tics, or itching?
NV: He was always prone to skin infections from his younger years. Following the stroke, oedema of the legs also set in. As for his skin, we were constantly taking care to fight dryness, cuts and infections.
Q: Did you feel a great deal of stress?
Q: Did you ever feel sad, down, depressed or hopeless?
NV: There was a sense of hopelessness early on because of what had happened. The realisation that everything from now on would be different and more difficult.
Q: Did you feel tired? Suffer from loss of energy?
NV: No. As a family, we managed to prevent any one person from being overburdened, I think.
Q: Did you resent the older adult in your care?
NV: Yes. When my father suffered the stroke, the initial symptoms were very mild. One day, when I came home from work, his face seemed to have fallen on one side. He had gone to a company clinic earlier. That doctor did not diagnose it as the onset of a stroke but of fatigue and high BP. He was then suffering from diabetes, which I did not know.
At that time, I didn’t know anything about strokes, hemorrhages or their causes but realised something serious was happening. I wanted to take him to hospital, but my father, who was still very much mobile, would not listen. By the time, we finally landed up at the hospital next evening, he was completely paralyzed on his left side.
A part of me, always laid the blame on him, for not listening to me early on. I also blame myself for not recognising that perhaps he was frightened and that I should have stepped up and forced him to go to the hospital. The other resentment came from the constant need he had to push people who were caring for him. He would make unjustifiable demands. Like wanting to travel in a train to attend a wedding and such. We knew he couldn’t but he would try pushing for it, nevertheless.
Knowing him to be ordinarily a very intelligent and educated person, I suppose I was the one to lose my cool the most and feel resentful whenever such demands came up. My mother and brother were probably the most balanced around him.
NV’s father passed away three years ago. At peace, finally.