Captain Ron’s VIEW FROM THE BRIDGE

January 2010

A patient living at home needed a live-in caregiver, as observed by a daughter who lived a few miles away.  The patient’s son, living in another part of the country didn’t understand why his sister couldn’t manage mornings and evenings, utilizing a paid caregiver for only a few hours a day to save money.

A patient in a nursing home fell and broke a wrist.  A son living close by believed Hospice was doing a good job managing the pain and symptoms and didn’t see the need for disruptive hospitalization and surgery.  A distant son who shared Power of Attorney ordered the facility to call 9-1-1 and have the parent taken to the hospital to have the wrist repaired.

A patient living at home with a daughter sees day-to-day how the patient is declining.  Visiting siblings who have not seen the parent for several months are shocked by the decline and question sister’s ability to be a caregiver.

Four siblings cannot agree on what to do for their aging parent.  Two live close and two are further away.  The one living furthest is an attorney and the parent has given this one authority over finances and health.  Those who see the parent daily have a problem with this.  The attorney, however, believes that the siblings are deadbeats trying to live off of the parent’s resources.

All of these scenarios have occurred to Hospice patients, as well as to thousands of other elderly people who are not able to provide for their own care.  Coordinating care between those who see parents daily or weekly versus those who live away is problematic.  Physicians, Hospices, hospitals and nursing facilities all struggle with providing care when the authority to act is unclear or disputed.  When one of the children’s chosen profession is in medicine, finance or law, that child may feel the need to wear the professional hat rather than simply being a child and an equal sibling.  Or siblings may expect it when the professional just wants to be a family member.

Suddenly being an only child looks rather advantageous.  Naturally, it isn’t something that we who have siblings can change.  I have aging parents living in Boise.  My siblings are in Northern Idaho and Southern California and I’m in Central Washington.  I have an in-law living with me and my wife.  Managing care involves managing communications.   Here are a few things I’ve learned:

1.  Getting everyone on the same page may not be possible but at least everyone can have the same information.  If I have information, I share it with siblings.

2.  Being honest about expectations is essential.  If I fail to speak my mind for fear of hurting a parent or sibling’s feelings I will create a greater mess down the road

3.  Know the difference between needs and wants.  Needs of parents take precedent over wants of adult children.  This involves being flexible in planning.  Wants of parents are negotiable with wants of adult children.

4.  Respite for all is essential.  Preventing caregiver breakdown should be laid on the table and discussed frequently.  Planning visits to aging parents to help rotate respite duties gives primary caregivers the needed break.  Five consecutive days of non-caregiving (or shared caregiving) every six months is a good minimum.  This allows caregivers to catch up on things neglected, like self-care.

5.  Expect different perspectives.  Distance, individual personalities and life choices, individual areas of expertise and interest are all part of what give us perspective.  Recognize that perspective is just that…a viewpoint, not a complete and correct analysis of all the facts.

6.  Ensure that everyone knows what to do in a variety of circumstances.  Each state requires different forms to elect level of medical intervention to be given to someone incapable of self-determination.  If one person is the primary POA (Power of Attorney) for medical, consider having a secondary in case the primary isn’t available.  Sometimes decisions need to be made quickly.  It is easy to armchair quarterback after the fact but when things are clear up front our loved-ones stand a better chance of having their wishes respected.

7.  Be aware of the role that money can play.  Scenes of families sitting around a lawyer’s office listening to a will being read may be entertaining but in real life it’s best not to have surprises.  Family relationships can be permanently damaged by money concerns.  It’s best to talk them out openly with all involved.

Rev. Ron Jetter, Executive Director

Lower Valley Hospice and Palliative Care

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