Your role is a decisive one, in deciding how long and more importantly, how well, your loved one lives. I hope that this material helps you accomplish a substantial quality of life, for yourself as well as your patient.
There is however, one harsh possibility that you have to face. It is likely that you will be witness to the death of your near one.
A caregiver is generally very emotionally attached to the patient. Over and above that, the duties of caregiving become such an integral and time consuming part of one's life, that very often, the caregiver's entire life revolves around the patient. Practically all daily activities, energies, resources and attention are devoted to maximizing the welfare of the patient. Hence, the void left by the departure of your patient, can be all consuming and staggering.
This, therefore, necessitates some practical readiness. Keep yourself engaged in other people and interests, even if you cannot devote much time to them. You may need to fall back on these, for support. Plan your finances and career. If you do not have an independent source of income, start learning some skills or preparing for a vocation, which will provide you with occupation and livelihood.
Keep in touch with your own inner guidance, understanding what your individual goals are. Do not give up on what you personally want to achieve, from your own life.
Discuss these issues with your patient. You will feel better to have learned this person's inputs, as he is so important in your life.
In the course of supporting a chronic patient, one discovers all the beauty in life. You must, in order to motivate the patient, to fight all the oppressive odds. Both of you would have cultivated greater appreciation for other people, relationships, interests and good health. All the factors that make a life well lived, so worthwhile. Forgetting all these painfully gained insights, in the grief of your loss, would be such a waste.
The fundamental reality of life is that everyone dies. And those who remain behind, must go on to make the best of their own lives. Having focused so much of your love and resources in maximizing your patient's welfare, it would be unfair, to do anything less for yourself.
I hope that you and your patient find the strength to convert this challenging situation into one of the most educating and rewarding experiences of your lifetime.