Last month I wrote a blog about sibling rivalry in caregiving which began with the following thoughts: 'As we are all well aware, providing caregiving for our parent(s) is complicated and messy. Siblings can often be both a blessing and a curse in this process, providing much needed relief and support, or perhaps creating additional stress and barriers to important decisions and resources.'
I received several very thoughtful responses – some of which followed a fairly consistent pattern of “Ok, thanks for unpacking the concept – now what?” So I thought I would spend the next few blogs discussing some practical tips and suggestions for managing caregiving with siblings. It occurred to me that a family meeting might be a logical place to begin.
When a family is facing the prospect of caregiving, there are several issues that need to be discussed and decisions to be made. Ideally, this can be done in the context of a family meeting. However, when siblings and other family members are involved, this alone can be daunting.
Here are some ideas to think about when planning a meeting:
- Who will participate? The definition of family varies widely and so there may need to be negotiation about who to include in the conversation.
- Recognize that not everyone may choose to participate. It is optimal for everyone to be at the meeting, however it may be that some may choose not to be involved and you may have to proceed without them.
- Don’t let distance inhibit participation: In the event that not all members are able to be present, but would like to participate, technology can be used to include those individuals (Facetime, Skype, Google chat, to name a few).
- Should we include Mom and/or Dad? This decision will need to be carefully considered based on the health and functional level of the parent being discussed. My personal opinion is that unless the parent has cognitive issues (such as dementia) that might cause them to misunderstand or be upset by the meeting, it is best to include them as they will have valuable input.
- Where will the meeting be held? It can be helpful to think of a ‘neutral’ location. Ideally, choose a location that is comfortable and presents as few distractions as possible.
- Consider an objective third party. If there are difficult dynamics present, bringing in an outside facilitator can be extremely useful. This can be a clergy member, a professional such as a geriatric care manager, or even a close family friend.
- Try to manage your expectations regarding the outcome. One family meeting will not “fix” long standing family dynamics. Not all caregiving issues will be resolved, decisions will not all be made, and it is very likely that you will have to accept a less than perfect outcome, as complete consensus may not be an option.
- Have an agenda (and try to stick to it!) Assign the task of planning an agenda to one family member and distribute the agenda at least a week before the meeting, if possible, which will allow everyone enough time to share feedback and additional ideas to include. The Family Caregiver Alliance suggests a list of topics that might be included in the agenda:
- The latest report from the physician
- Sharing of feelings about the illness/caregiving
- Fears:
- About death and dying
- About being overwhelmed
- About what will happen to family members after the death
- Sadness, confusion, anger, guilt, shame
- What does the person who is ill want and need?
- Fears:
- Daily caregiving needs:
- Should the sick person move in with us?
- Does she/he need to be in an assisted living facility or nursing home?
- How much time does each family member have to visit?
- Other ways each person can help? What other help might be available?
- Financial concerns in caregiving:
- How much will it cost?
- How much work can family members afford to miss?
- What financial help might be available from outside?
- Who will make decisions (e.g., financial, medical, hiring a caregiver, etc.) and how will they be made and communicated?
- What support role does each person want to play?
- What sort of support does the primary caregiver need?
- Need for respite (a break from caregiving)
- Help with meals, shopping, cleaning, laundry, etc.
- Emotional support by telephone or email
- Help with chores—i.e., taking the care recipient to doctor's appointments
- How will the caregiving and support needs change as the illness progresses?
- Problem Solving
- List of tasks that need doing
- Summary of meeting and schedule for next meeting
- Written summary of what each person has agreed to
- Email or telephone tree for regular updates
It is unlikely that all issues will be covered in one meeting, and it is important to make sure that everyone has a clear understanding of the outcome. It will be helpful to create some type of written document which captures the decisions that were made during the meeting to distribute to all participants. Identifying a note taker is often a good idea. If roles were identified and tasks delegated, these should be included and a calendar can indicate commitments and responsibilities that were assigned.
In the next blog, I will discuss other potential roadblocks in caregiving with siblings. In the meantime, I’d love to hear from those of you who may have suggestions from your own experience navigating this often tricky terrain.