I have been very lucky to have such a supportive family in my journey with kidney disease. I realise that everyone is not so lucky. I have seen all kinds. Some are extremely supportive, some not so much. Some, unfortunately treat the patient like a burden. No wonder so many dialysis patients are suicidal. A supportive family is a blessing. If you have one, be grateful.
I don’t blame families for getting tired of the disease. Kidney disease can be frustrating both for the patient and the family. While there is no doubt that it is more unforgiving for the patient, families often are affected quite badly as well. Typically, it is the closest caregiver who is affected the most. Accompanying the patient to dialysis thrice a week, making sure medication is taken, going to a range of doctors from time to time, hospital admissions and blood tests, all take a toll on the family member as well.
Then there is the important aspect of expenses on the treatment. In India, where most expenses are borne out of pocket, this can be quite debilitating for a family’s finances. Many families have their entire life’s savings wiped out in a few years. This increases the frustration of the family especially since the patient has not been cured by the time this could happen. It is an unending moral dilemma. Should the limited resources of a family be spent on a maintenance therapy with the patient becoming worse over the years with increasing co-morbidities? All this turmoil can cause a lot of mixed emotions among the family. Many family members take their anger out on various unrelated targets like hospitals, doctors, other family members, colleagues etc.
Patients can try and ease some of the trouble by becoming as independent as possible. Patients should try to get back to work if possible. They should take control of their health. They should ensure that they take their medication as prescribed on their own, follow their diet prescription diligently and even try to go to the dialysis session on their own. All this helps ease the burden on the family. Patients must keep telling them how much they appreciate the family’s efforts in helping. Indians are not very vocal about gratitude. Merely feeling grateful is not enough. Making it known is equally important.
All this helps to build a relationship that is not dysfunctional but mutually supportive and appreciative. This can go a long way in adding to the patient’s feeling of well-being and eventually make it easier to deal with the ups and downs of this disease.