My Dad recently had a stroke. Across the last five months, we have seen the pillar of our lives crumble in different ways - physically, mentally, cognitively, emotionally. It has changed our lives and the way we live completely. Doctor and physiotherapist visits, 24x7 nursing care, and dealing with the fact that the ground beneath our feet is constantly shifting. Every day I would just ask myself what could we have done differently to have avoided this misfortune. Just when dad had started recovering well and we had started accepting our new life and routine, dad suffered a second stroke and this time he also caught an infection which the doctors say may not end well.
While he has been through the worst with over 40 days in hospital both times, the most difficult thing to cope with has been the deep despair and heartbreak of knowing what Dad must be going through every day because of his debilitating condition.
With great difficulty and after a lot of thought we decided to bring him home. As part of his rehabilitation, we have to again employ physiotherapist visits, 24x7 nursing care, this time with more expertise as he is not like before. At the same time we are also constantly living with the fear of things going wrong, his condition going worse. To see your hero lying in bed being fed, dependent for his everyday needs, not being able to hear his voice has been the most difficult and traumatic time in our lives. However, as much as his relatives and friends miss him, its the immediate family who undoubtedly feels his absence even in his presence. Oh what wouldnt we give to hear him call our names? What wouldnt my mother give for his comforting presence in her bed next to her, for another argument with him, for his companionship?
But the most distressing thing has been dealing with people around us. While many have been supportive and wishing us well and constantly praying for him, many close ones have spoken ill behind our back, constantly judged us for the descisions we made, second guessed our intentions. This takes a toll on you mentally and psychologically for it leaves you feeling less and loathed with self guilt.
To those I wish to say that may you never have to go through what we have. May you never have to see your loved one suffer and deal with someone doubting your care for them lecturing us on the diets to give, treatments, etc. It is very painful. No one takes care of the care givers. No one takes a moment to ask them how they have been doing, have they gotten enough sleep, how are they managing the funds, their work, their health and their family.
To the people visiting us, I ask you to be kind to us. To trust that since we are the most affected by what happened to our loved one, we are definitely doing our best. That we have invested our time, effort and money in getting him the best treatment and care and if there was more we could do then we will do it regardless of what anyone has to suggest or say. We know best and its our call to make. Care giving is never one-size-fits-all. Unless you have lived with us for a week, both day and night, do not speak for us or speak of us. Its too much at times to be patient in the face of adversity so dont add to our distress and self guilt. And if you hear someone criticising us, shut them up and tell them, "Am sure they are doing their best".
Today, I want to tell myself and so many caregivers out there who are struggling to cope, don't get drowned in dealing with your ill ones. You don't owe answers or explanations to your relatives or friends and if they cared that much, then they might as well take over. Dont try to micro manage things. Its not possible. Mistakes will happen and its okay. You are human too. Self care is important. You may feel like giving up many times in the day but dont. The critics will criticize. That is all they know for they haven't lived in our shoes. They only know what they see in that moment and derive their conclusions from that.
Take time to love your loved one but also love yourself. Crack a joke or three whenever you can. Read a book, magazine or newspaper together for some time every day. Go for a walk. After all, for everything the illness has taken away from your loved one, what it can never ever take away is their love, their laughter and their memories.
