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.

The Torment

I just cannot sleep. Words knock about inside my brain and cry out for their freedom of expression! They come like a torrent and wash away any vestige of sleep from my distressed eyes. Night cannot hold them hostage and before daylight sweeps in, they force me back to the keyboard. “Freedom of expression! Freedom of expression!”-The clamour grows ever so loud and I dare not deny this literary downpour.

Fingers stealthily work the keyboard lest its drumbeat awaken my clueless husband. Anxiously they await the next idea to form in my mind. “Do not be a prisoner of past words,” they admonish me. “Be the fertile ground for reams of new ones.” I concur and listen earnestly to the inner voices. Fear has no place in a writer’s mind. Truth is foremost and must be bravely told. Any self-doubt or visions of crumbling respectability have to be firmly shown the door.

When everything seems to have fallen into place, there is the nagging feeling that words may run out, they may wander aimlessly without a clue or just plain disappear. During these brief moments of humility and total helplessness arise awe for the wonder of creation, of being an instrument in His hands (hopefully well tuned and graciously receptive).

As mind inevitably loses its concentration and starts to spread out, the invisible mynah of Aldous Huxley’s Island coos gently into my ears, “Attention to the here and the now” and so it shall be.

Will and Grace

It takes my breath away. Sometimes you get a glimpse of the elaborate machinations that go into assembling the many seemingly arbitrary moments of life into a meaningful purpose and you are awestruck by the miracle of it all.

At first when we took papa to a neurologist, the doctor sort of mumbled to us that he had early stages of Parkinson’s disease, hydrocephalus (water brain), and dementia. If it was not for God’s grace, I would have completely missed the significance of this. Somehow the word dementia caught my imagination and I started reading about it profusely. There were so many types of dementia and papa did not seem to fit the bill with any of them. Then God goes ahead and takes my breath away by bringing LBD to my attention. I could not believe how much all his symptoms matched and thus began a jihad to clinch the diagnosis.

It is not easy being totally unqualified and trying to tell a medical professional or anyone who thinks they have half a brain that you suspect your father has a major neurological disease called LBD which is seldom diagnosed because of its complexity and uncertainty. I felt like Galileo trying to bring the truth to an obstinate world and almost got ostracized. Thankfully mom and Zak immediately saw the merit in this and backed me fully.

I would take papa to different neurologists and freeze midway whenever they asked for his history. It was so complicated that I knew I was not able to articulate everything and God knows I am not the most lucid conversationalist. There was also the problem of letting the doctor know all the facts without hurting papa. I was getting desperate but I knew it would be unethical to force a diagnosis. I had to make them see what I was looking at and let them come to the same conclusion on their own. Meanwhile time was running out and it was imperative to get the right diagnosis for the wrong drug administered to an LBD patient can kill him (which is often the case) and this thought was haunting me.

I am humbled by the guidance that God gave me then, how He steered me through numerous obstacles, and made it permeate through my thick skull that I had to just write it all down. The solution was so simple that it was brilliant. Already the years that I slaved at medical transcription had armed me with all the right terms and format. I had already collected all the information that I had about papa. All I had to do was put it all together into one medical file with all the history, symptoms, records, test results, etc. something that would automatically have been done in a developed country but here it was unheard of.

Even the most mundane act is seldom that. One fine morning when I set about to write this document I felt like I was finally serving God’s will, fulfilling my destiny. Zak joked that I looked like Karate Kid preparing for the final battle! And what a war it has been!

An unwanted visitor called LBD

April has been a month of drowning and survival, literally and metaphorically. However while I survived the drowning and finally mastered the art of swimming at a coaching class, my papa continues to drown at a pitiful pace and there is no relief in sight. Once LBD catches hold of your loved one, it is one sinking after the other until they finally slump to the bottom. I try to collect as much information as I can about this little known dreadful neurological disease. At the same time, I struggle to remember and understand who my father is before the living entity that looks like my father now becomes more and more distant and frightening.

I like to paint in my mind the kindness, patience, and love he has bestowed on me over the years. I want to reconstruct those moments in my childhood which my mom often talks about when he used to walk all night carrying me whenever I was ill. I want to remember him as the soft-spoken, peaceful, and optimistic person that I knew him to be. I want to know about the person that mom was in love with who was handsome, vulnerable, meticulous, a brilliant doctor. It is hard to piece this together now for we do not really know when LBD truly began. I am always grateful when we have visitors who genuinely come to visit papa, for then it gifts us with those wonderful glimpses of a lucid papa who does not always exist for us in continuity. Also until now, he has always been better when we are outside, so we try to go out as much as we can for as mom says she wants to step out of this nightmare at least for a little while into a better dream.

This is the month when he lost his ability to dress himself for the most part. Now mom brushes his teeth and chooses his clothes. She takes such good care of him that to me she is an angel who suffers much in stoic silence. Mom does not remember anymore what a full night’s sleep means. So many other things that we take for granted in our daily life, she has foregone gracefully for him with barely a whimper.

In November of 2009, after pouring over the Internet for innumerable hours trying frantically to understand the causes for the changes in papa, I began to be convinced that he was suffering from LBD-the monster that brews when you throw in Alzheimer’s and Parkinson’s disease together. Then was the heart-wrenching agony of convincing others and finding a suitable neurologist who would truly understand. After several roadblocks that were thrown our way that almost shattered us, we have finally reached that stage by God’s grace.

One solace is that there are wonderful people out there who are willing to share their LBD stories, who make this journey easier by showing the path ahead. Thank you. God bless them all and may their journeys be smoother with ever His saving grace.

http://www.lewybodyjournal.org/journal/

Towards a new Avatar

Who has not faced disappointment in life? From a very early age, we start learning that all that we desire need not materialize. The tantrums of childhood usually give way to maturity and understanding in adulthood but some disappointments can still devastate us. Should life then be a string of achievements and disappointments binding us firmly to a state of emotional turmoil?

Hope necessarily brings disappointment in its wake. Are we then supposed to live through life without hope or desire?

Certainly man has pondered about these questions for centuries as is evidenced by these verses from the Bhagavad-Gita.

“When a man thinks of the objects, attachment to them arises; from attachment desire is born; from desire anger arises.”

Suppose we are capable of cultivating a temperament that lets us enjoy what we get while at the same time remaining untouched by disappointment when we fail to meet our aspirations; that would be bliss indeed.

This simple truth is expressed in the following verses from the Gita: “But the self-controlled man, moving amongst objects with the senses under restraint, and free from attraction and repulsion, attains to peace.”

If a desire is reasonable and to the good of all, we must work hard to attain it but we should have such evenness of mind that we need not shed a tear when we fail. Each person takes his own time to recover from disappointment. What we are trying to aim for is a reduction in the recovery time such that recovery becomes almost an instantaneous reaction.

Then alone would we be able to accept life as it comes, submitting peacefully to the will of God. Islam literally means peaceful surrender to the will of God and a true Muslim is one who has mastered his senses. Anger has no place in his heart. While appreciating one of the numerous instances in which the teachings of two great religions of our country and common sense merge seamlessly, let us try to incorporate this adage into our beleaguered lives and strive to be reborn as a new Avatar in tune with nature this New Year.