How to communicate caregiving needs & support within a family
“I’m watching my parent’s age, and I know there will be issues ahead. But, I don’t know where to begin asking them what they want, what they expect of me (or my siblings), and “gulp” how much money they have. So, how do you have those conversations?”
A different scenario can be a young parent confronted with a cancer diagnosis. Fear is stuck in their throat as they try to make sense of a life and world they could not imagine. Who is there to help, will I continue to work, what are my/our finances?
Caregiving can arrive at our doorsteps through aging, illness, accidents, and more.
What if our caregiving situation is short-term?
Not all caregiving is an investment of years. Instead, it can be months, weeks, or days that need changes in schedules, availability, employment, and child care to name a few. No matter the timeframe, it can be challenging.
Does any of this sound familiar to you? Have you lived these questions or tried to have conversations with parents, partners, siblings, or friends?
These are tough topics to tackle, so we often avoid them and hope everything will simply work out as we go. This strategy might work for you, but it doesn’t work for everyone.
These topics are complex for many of us. They can elicit feelings of worry about our vulnerability to depend on others and maintain our dignity. Yet, caregiving is also about love and a desire to be helpful to one another.
Generations ago, family members would take care of each other. I witnessed this in my extended family. But people have moved away from each other. We cannot assume caregiving will be assigned to specific individuals—assumptions are one place where problems can begin.
Where is a good place to start?
If caregiving is on the horizon, begin by having conversations about values, thoughts, and expectations.
It’s terrific if the person who needs caregiving can start talking about their current situation and what feels important. This can include remaining at home, the makeup of their healthcare team, and a general idea of the resources available.
The door is now open to acknowledging their preferences. While many people express a desire to stay in their home, the physical layout of the space may create problems with accessibility and safety. Planning for a long-term caregiving situation is likely to have many layers.
Caregiving is rarely static, and anticipating change can reduce some distress when plans need to alter.
Physical and cognitive changes may require an increased level of care. During these times of change, it’s also an excellent time to reassess:
the initial plan, and
consider options that meet the needs of both the caregiver and care recipient.
Planning post-operative care or cancer treatment care has some level of predictability.
Often there is a treatment plan for surgery, post-op rehabilitation, or a treatment regimen.
Having a sense of the length of time, frequency of appointments, and potential outcomes helps everyone create a foundation for a care plan.
Then, optimistically, the resources necessary to support everyone can be put in place or altered with greater ease.
These examples are just a fraction of the situations when health, age, and life circumstances change. Therefore, learning how to talk with one another is essential. Avoid pitfalls like demanding information, avoiding discussions, and making assumptions.
One place to begin is having a family meeting.
What is a Family Meeting?
A family meeting is a semi-formal discussion to prepare for or address ongoing caregiving issues.
The meeting should include
the care recipient,
anyone else engaged in planning and carrying out tasks,
and biological family members.
The participants should consist of the inner-most circle of those involved in care.
A friend recently moved across the country to return to her childhood home. Her sister, who needs caregiving, lives in the house and has been assisted by other family members. The household's makeup changes as the sister returns home and others move out into a new residence.
They held a family meeting to address how they would accommodate the changes, so everyone would feel satisfied. The group assembled together to talk about different topics. Still, with the understanding that they didn’t have to address or solve every issue at that meeting.
They used a table-top flip chart for brainstorming so everyone could visualize what was being discussed.
Holding A Family Meeting
The purpose of a family meeting is to gather those who are involved in caregiving and make caregiving decisions. The goal is to clarify expectations and reduce misunderstandings.
Here is one model for organizing a family meeting:
Decide who is involved
Include the care receiver, if possible, and anyone who will be affected by or concerned with decisions. Offer to teleconference with those at a distance.
Ask for input
Before the meeting:
ask for a list of concerns from all participants, and
ask for a list of tasks people are willing and able to do.
Focus on current concerns
Caregiving can have several stages. Consider a two-step approach, addressing the most pressing issues and creating a plan of action.
Be positive
Identify what each person can do, being realistic about expectations and limitations.
Create a written plan
List each task and the person(s) involved.
Identify how the plan will be evaluated.
Create a follow-up date to assess.
Decision making
Caregiving can stir up feelings and philosophical differences. Having a decision-making model helps with evaluating and updating plans.
A decision-making model to evaluate the plan can have the following structure:
Identify the problem
Pinpoint a problem as precisely as possible. Present facts about the situation and potential consequences it poses.
Gather information
Gather objective information, including health status, community and family resources, and finances.
Generate & evaluate options
Brainstorm options without judgment. Which options have the best outcomes? There may be no right or wrong answers.
Create & evaluate a plan
Write down the plan choosing the best option available at the time.
Create step by step items.
Identify when you will evaluate what is working and what needs to change.
Act & reassess
Create a trial plan of action. Recognize caregiving has many changes, and staying flexible is key to good decision making. Focus on issues and options, not personalities.
In summary - communicating caregiving needs & support within a family
Family meetings and decision-making models help family caregivers by offering a structured approach to caregiving that can be used as needed.
Start with the most pressing issues. Take one topic at a time and gather all those involved in planning and carrying out tasks.
Be positive, focusing on what is possible rather than differences of opinion or guilt about what should be done.
Any given meeting may not solve every problem or meet everyone's expectations, but it can begin asking questions for clarity and considering options for behavior during caregiving.
Family meetings are an effective way to address unresolved issues and plan for future needs as these arise over the course of caregiving.
Having a decision-making model will help caregivers to evaluate and update plans in order to create the most effective approach.
Family members should appreciate that good communication, planning and follow-through are important aspects of caregiving.
It is often helpful to write in a journal or blog about what is happening with caregiving, decisions made, issues encountered and anything else which strikes you as significant. This can help with future family meetings and communication between caregivers.
If you're in a caregiving situation and want some personalized help with the topics discussed above, book a free consultation with me through my website. We will discuss your unique situation and whether we'd be a good fit to work together.