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If one person has been designated as the family care coordinator and wants the other persons attending the meeting to give support with respite care, transportation to doctors, etc., everyone needs to be aware of this and in total agreement to do it. All must also be willing to work with the member of the family, friend or professional who is the care coordinator. If each attendee is given a copy of the instructions and wishes, he or she will be more understanding and supportive.
If the family care coordinator and/or the caregiver is not a family member, it is important that the family know this and that they are willing to work with these persons in support of the care.
We keep saying "IMPORTANT" as we talk about bringing the participants together. Experience has shown that even families that are close can quickly grow angry, jealous and hostile towards each other when an aging parent begins to need long term care. If a sibling moves into the parent's home, others can easily be suspicious of ulterior motives and fear to lose their inheritance. On the other hand, the child doing the entire care taking becomes bitter and feels there is no support or help from siblings.
Karen, who is a single mom with two children, moves in with her parents after her father has a stroke to help her mother take care of him. Her mother is not totally physically capable of caring for her husband. Needing money to pay for a home care service, Karen encourages her mother do a reverse mortgage on the home, which will provide the needed funds. Karen's brother becomes upset and persuades his parents not to do the reverse mortgage. He doesn't tell his sister that he suspects she is trying to get the money out of the house to benefit herself. If communication had been open and Karen's brother had known the need and been involved with his parents care, he would not have reacted negatively.
Every family is different. Some families are close and some have never been compatible. Nonetheless, all family members should be invited to the agreement meeting. If you feel the communication will be strained, consider having a professional mediator present.
The mediator will be able to keep things calm and running smoothly and help work out each person's concern. Make sure you get everyone's consent before bringing in a mediator.
Then--and here is another IMPORTANT issue--ask for each member attending to give his or her input. Allow participants to voice their concerns and give suggestions. Encourage each person to tell what he likes and dislikes about the care plan. For those who disagree, ask how they would like to see that part handled.
This does not mean you need to change your plan. The person needing the care is the ultimate decision maker. But if a small change will make everyone more supportive, it is worth it. It is very important not to dictate but to encourage attendees to communicate their concerns, their desires or their suggestions and be a part of the long term care plan.
The first step to holding a meeting, and perhaps the most difficult one, is to get all interested persons together in one place at one time. If it's a family gathering, perhaps a birthday, an anniversary or another special event could be used as a way to get all to meet. Or maybe even a special dinner might be an incentive.
The person conducting the meeting can be a parent or one person of a couple who are doing their planning, years before the need for care arises. A meeting on behalf of someone already receiving care or needing care in the immediate future could be conducted by that person or by a member of the family, by an adviser or a friend. The person conducting the meeting should be someone who is respected by all those attending. Preferably, this is the Care Coordinator.
The agenda could be formal or informal. If you want a formal agenda, we suggest using our care planning checklist as the agenda.
Copies of the care plan should be prepared prior to the meeting and presented to those attending. Discussion is encouraged and we recommend that the person in charge not dictate but encourage input from everyone.
After a thorough discussion of the issues and the presentation of the solutions to the problems that will be encountered, there should be a consensus of all attending to support the plan. If the plan needs to be altered to meet everyone's expectations then by all means do so if that can be done. But it is not always possible to please everyone so there must sometimes be compromise.
The end of the meeting should consist of asking everyone present to make his or her commitment to support the plan. This might just simply be moral support and agreement to abide by the provisions or it is hoped that those attending will volunteer to do something constructive. This might mean commitments to providing care, transportation, financial support, making legal arrangements or some other tangible support.
All good intentions seem to be forgotten with time. Without a written agreement and within a few months, family members, who were so supportive to begin with, will be distracted by other issues and typically will not live up to their commitments. If there are vocal commitments to help with transportation to doctors, give respite to the caregiver or other commitments, write them down on the care agreement. To help with the commitment, each person pledging help should sign the agreement.
Even with the written agreement, family members often renege on their support. However, the written agreement is valuable. Showing those who are not living up to their duty a copy of a written pledge has more weight with persuading them to live up to their commitments by asking them for help. It is so typical that when going back and asking for the help that was originally offered, all sorts of excuses are offered for not providing that help. Even though it is not a contract, a written and signed document carries much more weight in reminding them of their commitment than pleading for assistance.
Despite the advantage of a written agreement, the approach might be a little too heavy-handed for many families. Or other families might see it as offensive. Every family is different. If a written and signed agreement won't work, don't offend the family with it. Perhaps everyone would be supportive of simply writing down their commitments without a signature. If not, then a verbal agreement will have to suffice.