Tuesday, 04 October 2011 12:04

Spare a thought for the caregiver

Written by  Kamal Shah
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Being on dialysis is difficult. Being a caregiver for someone on dialysis can be difficult too. Seeing a loved one being diagnosed with a life-threatening disease can be emotionally very stressful. Every individual reacts differently.

I have seen my family over the years. And now, because of NephroPlus, I have seen and interacted with a whole lot of caregivers. Sons, daughters, wives, husbands, fathers, mothers. Almost every possible relationship.

Everyone starts off with shock and extreme feelings of love and sympathy for the affected person. How that holds differs from person to person. Some maintain the same level of love and affection over the years. In some, it slowly starts to wear off. In some, it turns into total apathy; in some even hate.

The patient also changes mentally. And this causes the family to change as well. I have seen people who were executives at good companies being reduced to simply names who occupy beds at the dialysis units during their allotted shifts. This can be quite humbling for the patients. They, who used to command the  respect of dozens of their subordinates, earned huge salaries, enjoyed the best comforts, always flew business class are now at the mercy of unethical technicians and nurses who sometimes even scold them. Yes, this can be humbling indeed.

I often see caregivers being severely burdened with guilt. Guilt for not doing enough. Guilt for not being there throughout. The whole problem with kidney disease is the continuity, there not being light at the end of the tunnel, it being a week after week thing, in perpetuity. Unlike cardiac disease where a surgery ends the problem (at least for the most part) or cancer where the problem often ends with the person (and the attempt here is not to lessen, in any way, the enormity of the suffering of the patient or the hurt in the family of these two health conditions), the fight with kidney disease is often drawn out over years causing a huge impact on an entire family's finances apart from the mental trauma.

Caregivers often realize that they need to get back to work! And to get on with their life. Sometimes patients make it easy by co-operating and being practical. However, sometimes, due to genuine reasons or otherwise, patients see this as being a crime. "He does not care for me any more!" Or worse, go into bouts of depression.

So, here's my advice to patients: Yes, we have the disease. We suffer the most. No two ways about that. However, let us understand that our family is also affected. In ways that we do not realize. Spare a thought for them. They have their own life. Let us not make our life theirs. Give them space. Let them live their life. If we do that, they will be recharged to help us with our problems.

... http://www.kamaldshah.com/2011/10/spare-thought-for-caregiver.html

Kamal Shah

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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