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Friday July 30,2010

Understanding Grief In the Terminal Ill

by Linda J. Austin

By now most of you probably recognize the term anticipatory grief .... there's a loss coming, you know that but you don't know when it will happen. When you heard the diagnosis was terminal your world turned upside down and you've had to kick stuff out of the way or assemble your life the best way you can. This is very frustrating - we like order; we like to know that summer follows spring, day follows night, today follows yesterday.

If you are the patient you don't know how many yesterdays and todays there will be ... you start making that "before I can die" checklist and the grieving process begins; a more intense grief because unlike those 'left behind', there will be no adjustment period.

In an earlier newsletter I indicated that caregivers probably won't find the checklist written down. Only the dying person knows exactly what's on the list, but I can give you a few possibilities: (1) forgiving yourself for things you did that you knew were wrong, but you did anyway, and you didn't get caught, but they've bothered you; (2) forgiving people you've been angry with; (3) finishing projects, perhaps a book you were writing, a quilt, a photo album; (4) relinquishing roles; (5) celebrating a special day - wedding anniversary, birth of a child, wedding; (6) resolving spiritual issues (7) saying goodbye. The list will be specific to the person.

Here are some of the possible losses the dying may be concerned about: control, independence, productivity, security, predictability and consistency, experiences, future existence, ability to complete plans and projects, dreams and hopes for the future, significant others, familiar environment, possessions.

You can help by listening and even beginning a conversation. Don't reassure the person that everything will be okay. That doesn't help and it stops the conversation. Be truthful. You don't have to have the answers.

Let the dying person lead. Let them make the decisions and maintain control as much as possible.

Sometimes it is easier to dress someone or bathe them than to let them do it themselves - independence is important. Let the patient do as much as they can for as long as they can. Be close by to offer assistance.

Let the patient be useful - productive. Make it a habit to say, "thanks for ...". If the patient had to retire due to illness and hasn't adjusted to the loss of position, talk with the patient's co-workers, perhaps they could use the patient's expert advice on some issue.

Security can mean finances or secure in their place in the hearts and lives of others. Listening will tell you which it is.

Try to keep things as constant as possible. I know this is difficult with home care agencies that seldom send the same person two days in a row. Do what you can; some things caregivers can't control. This goes much deeper than scheduling nurses - favorite clothes, music, how the person lived life before terminal illness changed it.