By one who has been there and learned the hard way
There is nothing harder than caring for a terminally ill loved one--except not having the loved one to care for.
If you choose to become the care giver--even with the assistance of a hospice program--know that this will be not merely an important job, not merely the most important job, but instead, the one and only job that you have for so long as you have it.
If you cannot accept the job on these terms, then do not accept it at all.
All else is secondary to the tasks of caring. Learn to treat everything else you must or should do as a respite, as recreation, as rest.
By all means, enroll in a hospice program. Then you may call for help and be assured of regular visitation, advice, encouragement, and understanding.
Learn from the hospice nurses about current conditions, but do not expect a detailed or guaranteed prognosis.
Learn from the hospice aids how to do things, but do not expect them to do everything needed.
Adapt techniques of care that you learn to the one for which you care--for you know that person and love that person more than even dedicated hospice helpers, aids, volunteers, and nurses possibly can.
So long as the one you care for can express his or her desires, use them as a guide to what you do and how you do it.
Do not let a question linger: ask for an answer from hospice personnel or medical personnel. There is no such thing as a dumb, foolish, or stupid question, except for the question that goes unasked.
Learn to sleep in short sessions. It is not easy and it is not too good for you. But long sleep periods may be worse for the loved one in your care. When your term of service is over, be prepared to spend a considerable time trying to re-establish your normal sleep cycle.
Prepare yourself to do jobs that you cannot now imagine doing. Changing diapers and cleaning up messes that you are accustomed to thinking of as private and often foul will become routine. Washing private areas of your loved one is both necessary and routine. In all such matters, re-assure the loved one, for his or her privacy, dignity, and self-respect are at stake.
Learn to accept the sight of unbearable things, such as blood, stool, urine, stomach bile, un-healing sores, and vomit. Learn not to react negatively to them. Learn to take them in stride.
Do not chastise the loved one for what he or she cannot control. Likewise, do not present the loved one with a falsely cheerful face. Take the serious seriously. Take the unpleasant in stride (and curse the walls of another room, if necessary). Make the situation pleasant and even tell a funny story whenever the loved one is prepared to hear such things.
Keep the loved one informed about his or her situation and about the wider world around him or her. Find the loved one's interests--which may now not be identical to the interests shown when the loved one was able to be active--and feed those interests with information, anecdotes, and conversation.
Make special occasions, like an early "mini-Christmas," for the loved one. But, make sure that it is an exchange, not a one-way street. Let the loved one give as well as receive.
Let visitors be alone with the loved one, especially if the visitor is a special friend. Instruct the visitor to call you at the earliest sign of a need. Do not overly restrict the duration of the visit. Your loved one may be tired out from the visit, but you will discover that the loved one is also strengthened after a little rest. And the loved one will be cheered if the visitor is sensitive enough to focus on their mutual interests and not on your loved one's condition.
Inform key family members of any change of condition. Indeed, find a family member who will act as the relay to the rest of the family. Recommend visits from family members at each change of condition. Do not withhold family visits, even when you think that the end is near. It is better to be wrong and allow family to visit your loved one an extra time than to be right and not let the family visit if they wish.
A cordless telephone is a wonderful instrument for letting the loved one stay in touch with family and friends as long as possible.
A hospital bed and the loved-one's own bed will become a serious matter for decision. If the loved one can move or roll, then a full size or larger bed may be preferable. A hospital bed is narrow but has head and leg adjustments for when the loved one can no longer effectively roll from side-to-side.
Learn with the loved one to handle many care chores cooperatively. Changing bed linens and protective pads may require special "roll-over" techniques. The best way to do them is the way you learn together.
Learn to wash the loved one gently and in ways acceptable to the loved one. Learn to wash legs, feet, and private areas effectively but sensitively. Learn to apply the loved one's favorite lotions and creams, as well as any others deemed necessary by hospice or medical personnel.
Learn to administer medications accurately, effectively, and on time.
Learn to assist with feeding, but do not force food--not even water. Your loved one may stop eating altogether--or go on a liquid diet. If you fear dehydration, ask for advice and assistance.
Monitor breathing and, if you are worried, ask for assistance.
Insist on effective and prompt pain management. Accept no avoidable delays.
Do not try to reform the loved one. If he or she smokes, this is no time to change that, unless smoking hinders necessary medications. Instead, think about safety. If the patient can no longer sit up to smoke, then be present at every smoking episode--even to holding the cigarette.
Do not sit and stare at the loved one. Instead, engage in conversation with the loved one, even if the conversation is somewhat one-way.
Hold hands--a lot!
Be prepared for the nearing of the end. Expect delirium, short attention spans that grow increasingly shorter, non-responsiveness, non-eating, refusal of water despite a growing amount of dried bile in the mouth, labored breathing that you wish you could ease.
The nearing of the end is a time of growing care-giver fatigue and aversion. You will experience heart-break every time that you look in on your loved one--almost to the point of not being able to bear to see him or her in that condition. This is the time to find the extra strength to look in more often, even if it means feeling helpless at not being able to do anything just then. This is the time to talk with trusted friends or family members to share those feelings so that you can muster the strength to carry on until the end has arrived.
Do not expect to be present, or feel guilty if you are not present, in the room at the exact moment of passing. That moment is beyond your control. But call for help if you sense that moment is near.
You will have questions for a considerable time after the end. Did I do all that could and should have been done? Did I do things right? Did I do something wrong that made things worse? Do not dwell on these questions, because there are no answers except this one: If you did all that you could in the best way that you knew how, then you did very well indeed.
Let the professionals care for your loved one after he or she has passed away.
You will feel empty once the end has come. Tears are natural to men and to women at this time. Find time among the necessary chores and phone calls to simply sit and grieve--although, for many, a family member or friend near by is an aid to grieving.
Every sense of loss has two sides. You may be much less than you were, now that you are without your loved one, but you are much more than you could have been had you not loved him or her.
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