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Coping with Siblings and Family when a Loved One is Ill

Published by Chapster on 2003/12/23 (6402 reads)
Taped at the KEOM studios in December 2003

Q: So, Mike what is today’s topic?

A: Well, I thought we’d talk about family issues again. We’ve spoken a little about this before, but it seems one of the topics that bears repeated conversation. We see quite a bit of dissension in families when an aging loved one is terminally ill. And, there are several themes that seem to give rise to those difficulties.

The first one is an issue of distance, or the flew the coupe syndrome. One family member, a daughter, lives near the parent, gives most of the day-to-day care and makes most of the health care decisions. One or more siblings live out of town, and jet in once in awhile, usually as there are major signs of decline. Now the woman who lives in town has typically been trying to balance her own family and professional life, with the life of her loved one. Then, her sister comes to visit, probably with the best of intentions, and wants to run a million tests, move the parent to a new facility, and try some new treatment. The local caregiver, who’s life has often been on-hold due to her role as caregiver, ends up with feelings of guilt and new pressure put on her: Guilt because wittingly or unwittingly, the family has second-guessed her, and pressure, because her sister has set new treatments, etc in place, and then jets back home. Once again, she’s stuck with the onus of being primary caregiver and stuck with choices she would not have made. Her family flew the coupe.

So, the first theme is answered by the need for trust and the need for engagement. In this scenario, it is perfectly natural for the out-of-town family to question and want to be part of the decision making. But, they also should be willing to take in the parent themselves, if they want to have the same level of choices as the local sibling. The parent needs a local caregiver, if at all possible, to make decisions in emergencies and in difficult times. Barb and I have sat beside many caregivers who’s hearts are broken not only by the devastation of seeing a parent in the process of decline, but also by the lack of trust and understanding of the sacrifice that has been made to render good care.

Q: What is the second theme?

A: It is the unwillingness to accept the dying process, or if I pretend it isn’t so, it’ll go away. In this case, a sibling refuses to accept that mom or dad is dying. Of course, everyone comes to a sense of acceptance at a different rate. In this day of astounding medical progress, it seems like we have made the deliberate choice to believe that death is not a part of life. And so, a son makes a choice not to put a feeding tube in dad, knowing that dad is ready to die, and indeed, doesn’t want to suffer with his cancer any longer than is necessary. A daughter, is furious that he would make such a choice, and accuses him of trying to starve Daddy to death.

Denial is a wonderful thing and it serves a lot of useful purposes. But, it can also be very destructive. In this case, denial causes family strife and it prevents the sister from facing facts that would enable the family to, as a unit, give Mom or Dad the gift of gentle, and harmonious parting from this life. By denying, we keep up these interventions until the patient is no longer able to say any goodbyes, and there is no way to bring the story to closure. We need to take a hard and conscientious look at what the situation really is, not what we wish it would be.

Q: What can primary caregivers do in these circumstances?

A: First, as much as possible, try and trust yourself. Secondly, confide in the professional medical caregivers that you are using. Use their feedback to gauge your own level of understanding and coping. Really listen to them. Third, make sure of your legal standing as primary caregiver. Of course, you don’t want to resort to legal resources, but you should have this just in case you need it. Fourth, protect yourself and be as strong as you can be. You don’t have to talk to any person who is abusive to you, nor should you, until they are able to talk in a reasonable and respectful manner. Fifth, take care of yourself. In taking care of yourself you gain the ability to make better decisions and give your love more freely.

Tags: coping   family   strife   disagreement   siblings  

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