Being an LBD caregiver

Living with an LBD patient day in and out or even just visiting him is not easy to say the very least. It is heart wrenching to see a loved one slowly being eaten away by this dreadful disease. However when you love someone, you know that you have to be there for them in their hour of need. Tear-filled eyes cannot see the truth.

With LBD, getting a diagnosis itself is a struggle. If you suspect your loved one to have LBD, it is better to write down all the symptoms and a proper history before consulting a neurologist. This saves the tragedy of omitting precious details that often results in a misdiagnosis. Proper diagnosis is of utmost importance to prevent untimely death.

The relief of clinching the diagnosis fades away as soon as you realize you are struggling down the slippery slope of uncertainty and poor prognosis. Increasingly there is a lot of information on the Net that is reliable and this helps to understand what future has in store for us. Coming to terms with possibility of early death or prolonged suffering is very difficult but it is the stepping stone to preparing an environment of love and patience for your loved one. The one thing that you can keep in mind to make you feel better is that, as the disease progresses your loved one will not know that he is ill and he will be quite happy and peaceful most of the time. He also virtually has no pain.

It is the caregivers who suffer terribly unable to reconcile to the changes that occur to their loved ones. Seven months after his diagnosis and almost a year after I first suspected LBD, my father is but a shadow of his former self. He retains his core personality yet rarely comes out of his world and genuine contact and transmission of ideas becomes increasingly impossible.

For me, it is like being caught in the land of the living dead. I mourn his death everyday; yet retain the relief of being able to see him or hug him. This might seem morbid to those who do not know what LBD is. We caregivers are in a world of our own. No one else can never truly understand our suffering. LBD breaks our heart little by little. The world seems to go on for all while we seem to be caught in an eternal moment of bereavement.

Caregivers need to reconcile to the fact early on that we are really on our own. In spite of explaining countless times what LBD is, people will still ask you whether your L.O. is improving and even if you want to shout from the rooftops that “No, Don’t you understand that he is never going to improve. He is just dying,” you do not have the heart to say that.

Then there is the casual “How is he?” which you hear all the time and you learn soon enough that the questioners are not really interested in hearing the whole truth. They often leave you hanging in mid sentence and move on to other subjects while you are still crying inside.

This is a good time however to be closer to God and the few people who really care and we can just be grateful for all that we do have. The ability to remember and recognize our loved ones, to know the name of our favorite food, to comprehend what others are communicating to us- all these countless blessings that people usually take for granted, we truly recognize to be precious. In that gratitude, life blooms anew.