The Caregivers journey

There is nothing harder or more complex in life than to tend to a loved one whose life is slowly and painfully draining away. The caregiver- be it the parent, spouse or sibling face difficult and in some cases incredibly painful choices. While more attention is focused on the patient, we sometimes forget that such illness not only attacks the patient but indeed the entire family. How does the caregiver, who may make this difficult and painful journey alone, cope with the physical, mental and psychological problems that lie ahead?

The journey often starts with a call that says your mom's fallen, your dad's had an accident or your spouse has a frightening diagnosis. Little do you realize the turns and twists that await you on this tortuous journey of caregiving – a role you never asked for nor sought but one that will dominate your life into the future. You realize, perhaps for the first time, you have a new role—family caregiver and the family rock.

The first reaction to the news is usually one of stunned disbelief—“It’s not possible” or “Why me?” But as the hard facts sink in, there is both denial and defiance. Both the patient and the caregiver often refuse to accept the verdict- often delivered by the doctor with clinical accuracy in guise of objectivity. Could the diagnosis be wrong? Is there another expert to be consulted? Thus starts a period of intense activity. There is a search for the best experts in the world, the latest advances in medicine, and experiences of others who have survived. “We will beat this thing” you tell your loved one. Experts and doctors are consulted, blood tests and other diagnostic instruments repeated, google searched for any other options around the world for any cures. It is the period too when family and friends express their concern and offer suggestions as who to consult and what to do, sending cuttings from newspapers about the latest advances in medicine. Each day brings hope of a new cure or a new discovery and promise of a different future.

Sadly, in most cases, this does not sustain and the cold hard realization sets in that there are no silver bullets and no quick cures to what afflicts your loved one. The sprint for recovery now becomes a marathon. You begin living with a new uncertainty. You know that you're not going back to the old normal. You, the caregiver, are slowly gradually left alone as family and friends, the crisis of discovery over, return to their respective lives. Thus begins a period where you realize that you must now learn to live with an affliction that would be long lasting. “When I first learned that my husband would be an invalid and had none or little chance of a full recovery, my first reaction was of relief. At least I would have him for some more time. And that perhaps over time medical breakthroughs might help his recovery” says one caregiver whose husband was diagnosed with terminal cancer.

It is true that things usually settle down after the first excitement is over but you are now entering the most painful part of the journey. First the daily routines take over. The patient is slowly learning to accept the limitations of the affliction. But burdened with the sole daily responsibility, the physical toll mounts on the caregiver and soon fatigue takes over. As the days stretch out and the constant drumbeat of doctors and medicines dominates daily life, you will often despair and yearn for the old days. Pangs of regret over travels not taken and visits not made will overwhelm you at times. Sometimes anger overcomes you as the prospect of endless ministrations lies before you without end. It is a cell that you cannot break out of and sometimes you lash out at your loved one till remorse overtakes you. He or she did not choose this illness and is as much a prisoner of this situation as you are. Yet watching life go by does require a resolution and steel as you tend to your loved one. Some come to terms with the limitations and yet continue to lead a busy and productive life. There can be high points too as you both discover new things despite constraints and continue building memories for the future. You soon realize that it will continue to be a rollercoaster—you may be up and down for weeks or even months. But surviving this despite the physical toll it is taking becomes crucial during this period since you are essentially now alone.

In the Indian system the caregiver used to have a support system. In the joint family system, the invalid remained a part of the family and everybody pitched in to help and care along of course with the servants. But with the breakdown of the joint family system, the nuclear family has become increasingly ill equipped to handle any major long term illness particularly since there are so few institutional facilities to help the caregivers. In the US there are a large number of nursing homes and assisted family care institutions, and even a home care service provider service, and finally a hospice, but besides being ruinously expensive, they rarely satisfy the urge to hew closely to the loved ones at their times of need

And then there is the psychological toll even as flashes of past joys intermingle with the sorrows to come in future. As a caregiver, you totally commit yourself to caring for another person who no longer functions as they once did in the normal scheme of life. You may give up our job, your own independence, and very often your lifestyle. You become so involved with the care of that person out of love that you become removed from normal day to day living. Your entire life revolves around comforting and making our loved one feel loved. In a very real sense you have given your life for another but this comes at a price. Gail Sheehy advises the caregivers “You've become very good at caregiving by now. You're the only one your loved one trusts. You believe you're the only one who truly understands what he or she needs. You're seen as heroic. You're playing God. But you know what? We ain't God. We can't control disease or aging. And if we keep trying we'll be overcome by stress and fatigue and come to a dead end. You were convinced you could do it differently. But a few years into it you break down in tears and total fatigue. You've given up so much. You absolutely must come up for air or you'll go down in despair.” This lesson is the hardest to accept.

Slowly as your loved one’s conditions worsens, there comes the acceptance that this long journey can have but one end. Yet there remains a fierce desire to prolong this journey even as the daily setbacks mount. Yet no one can answer your most burning question. How long? He too understands and begins to withdraw into silences as he comes to term with his mortality. Besides making sure that those left behind are well provided for, he will also wonder what life would be for them when he is no longer around. This is where the process of separation must begin. It is a slow and painful progression, but the other way is to lose your self and go down with the person you're caring for. That would be a double tragedy.

And then, suddenly, it's over. Your loved one has passed on. Now what? Maybe you've forgotten who you were before. You've been consumed for so long by caring for someone you love. You have given of yourself and done a beautiful thing. Unfortunately for the caregiver the journey does not end with the end. For you have now have to embark on a new journey to come back to a life without your loved one, a journey almost as difficult as the one just completed.

And when the grieving is over, it is time to begin the process of finding your way back into the world. How does one pick up the pieces and start to live again? It will come down to taking one step at a time, some will walk slower than others and some will speed their way back out into the world! Often there will be one step forward and two backwards. While it is not an easy process, remember that there is a life after caregiving! You just have to look forward and find opportunities that are once again there for you. Renew old friendships, find a job that you feel good doing, do volunteer work, find a new or renew an old hobby but you must begin to take a few small steps towards living again! One of the best therapies is finding a friend you can talk to, one who will listen and support you as you ease back into the world!

Soon you will find that life does still exist and you are a part of it! After the first months of mourning, grief will come out of nowhere when you least expect it. Don't sit around and wait for depression to set in. Pick up your passion—whatever you do where time passes and you don't even notice—and follow it. It will lead you on a new path. Look at it as a new adventure in your life and your tribute to the one who has gone before you.