Nov 10, 2011

Effective Alzheimer's Family Caregiving Can Require Mediation

A good mediator can reduce stress, clear up misunderstandings, lessen sibling rivalries, and help settle existing “family feuds”.

By Carole B. Larkin
Alzheimer's Reading Room

Carole LarkinLately it seems I’ve been doing a lot of “mediation”. Sometimes mediations occur at the home of a family member; or, in the case of families that live in multiple locations they can take place over the telephone via a conference call.

Effective mediation usually requires a series of meetings that take place over time.

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One family that I found particularly memorable comes to mind. They put the “fun” in dys”fun”tional!

There were five children and one grandchild raised by the mother in a home defined by alcoholism. Two of the children clearly inherited the disease; the others were not so forthcoming in naming the disabilities they inherited from that upbringing.

The children regularly fought among themselves. The mother in the mid-stage of Alzheimer’s lived with one son. By the time I arrived on the scene the son was clearly overwhelmed and burnt out.

I was called in to help the children decide on an effective plan and course of action so that their mother could receive the necessary care she needed. They were unable to do this on their own.

We started with a series of one hour telephone conferences.

First came education on just what Alzheimer’s disease meant now and for the future. Some children understood while others were into denial refusing to believe or understand that their mother was suffering from Alzheimer's disease. Some had what I can best describe as the "whatever" attitude.

After a few of sessions, we finally arrived at the point where a plan of action with options could be discussed. Issues like the health of the mother, her stage of Alzheimer's, and funds available had been defined.

Then the “fun” really began! We actually developed rules that each person had to agree to up front or they could not participate in the discussion. One of my challenges as mediator was trying to keep people respectful and focused on the problem; rather than focusing on problems that had existed for years in the family.

It went pretty well, except for the call where one got angry and hung up. By the next phone call, he was back and cooperating. Finally the vote was taken and the majority decided to send mom to a (wonderful) memory care community nearby. As preparations to move her were being made, mom became ill and went to the hospital. There they found stage 4 colon cancer, and mom went to hospice instead of the assisted living. At least the children were able to agree on that, after all the work that went into the plan for placement. Mom died two weeks later.

Another family has a daughter in town, a son living in Texas, but not near the parents and a daughter on the west coast. The daughter here was overwhelmed in caring for both parents, and complained about getting little or no help from her sister and brother. She said that they each would fly in (maybe) two or three times a year for several days to a week and that they rarely phoned mom and dad.

The daughter was angry and frustrated.

We had the other two children fly in for a face-to-face family meeting and aired out everybody’s concerns and positions on calling and visiting the parents. In this particular case money was not an issue.

We had a follow up telephone conference where we set a schedule for the two out-of-towners to visit. Both committed to visiting every three months for a total of 8 visits per year. The visits would be staged so that they didn't overlap.

The in town daughter was satisfied with this, and the other two could plan their schedules well in advance so that they could arrange or rearrange their lives.

At the next telephone conference we will set the schedule for phone calls so that mom and dad hear from all children equally. After all agreements are in place additional mediation will involve monitoring the situation, ironing out any kinks in the plan, and hopefully making it work well for the patients -- the mother and father.

Sometimes using a non-family member mediator who is a disinterested third party is the only way to get families to focus on the problem and make decisions.

Mediators help manage the conversation, help educate family members, and help those family members that are either far away or out of the loop understand the realities of Alzheimer's disease and dementia care giving.

The development of a plan along with the help of the mediator allows families to get on track and to start making important, necessary and often difficult decisions.

A good mediator can reduce stress, clear up misunderstandings, lessen sibling rivalries, and help settle existing “family feuds”. The goal is to develop a suitable family care plan that brings all members into a loop and assures that the patient gets the appropriate and necessary care.

My next mediation will be between step-children of parents in a second marriage. Both parents have cognitive issues, and each parent has separate assets. It is likely that assets will need to be combined in order to afford suitable care. This should prove interesting and challenging.

Carole Larkin MAG, CMC, DCP, EICS is a geriatric care manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC, is located in Dallas, TX.

Original content Carole Larkin, the Alzheimer's Reading Room