Color & Control:

Decisions, Decisions

Clever ways to make better, faster and safer caregiving choices

By Mary Bart

Whether you have offered to be a caregiver or the role has magically been given to you, you will be constantly faced with making decisions. And, whether big or small, whatever  you decide may impact lots of people and have lasting effects. Let’s take a look at how three families tackled the issues.

Decisions, decisions(img 1)1. Cornerstones for success

Caregiving decisions are complicated and complex. They can be fraught with guilt, tension, compromise and made even more stressful by family members with different values, opinions and unresolved issues. Let’s meet Jean to see how she has decided to incorporate the cornerstones of successful caregiving into her decision making process.

Meet Jean and Albert Jean is the caregiver to Albert, her 64-year-old husband who was diagnosed with brain cancer, 4 months ago. In addition to being his principal caregiver, taking him to countless medical appointments including his chemotherapy treatments, she also works as a full time receptionist at a large, fast paced law firm. Jean worries how she will manage everything and be ready, willing and able to make the mountain of decisions facing her. She also worries about her own health. Albert needs her now more than ever and she knows that she must be healthy, for the both of them. How will she care for him, keep her job, keep her sanity and of yes, take care of herself too? Jean’s life has now become an endless stream of tactical and strategic decisions. To help her make the best decisions both quickly and wisely to achieve her goals, she has decided to focus on the following strategies:

Create a team and plan Jean knows she cannot make all the decisions on her own. As required, she will seek the support, experience and insights from family members, friends, health care providers, and legal and financial advisors. There are legal documents such as Wills and Power of Attorney that must be current, CRA tax filings to be annually submitted and the couple’s financial goals and plans may need to be adjusted. Of course, the most important person to include in this process is Albert. He needs to be an active, participating member of his decision making team. This will not only help support his dignity but greatly increase the odds of the decisions succeeding. Planning will also help Jean to create a sense of structure, order and control.

Be open to new ideas. Remember the expression: “You can’t see the forest for the trees?” This old saying applies to family caregivers, especially when they we get overwhelmed, stressed and burnt-out. Often family caregivers are so consumed in their role that they block themselves from new ideas. New ideas can help the decision making process and can often add unexpected value. While new ideas are being explored and presented, Jean will encourage open brain storming and try to be non-judgmental of the new ideas. Once all of the ideas have been presented, Jean will be able (with her team) to weigh each idea against the others. Having more ideas to work with will help them to make better decisions than only working with a few ideas.

Learn about community services. Caregiving can be isolating and lonely, hard work. What community and volunteer services can Jean access? Could the local cancer society help drive Albert to some of his appointments if she cannot leave work? Are there local groups that deliver hot meals? What are the costs of hiring a home care service? What help can she get from her own family and friends?

Decisions, decisions(img 2)2. Professional mediators

Caregivers and their families often find themselves in a downward spiral when they are unable to make important, timely decisions. Sometimes it takes a professional mediator to help families be respectful to each other and  decide on a new care plan. Let’s take a look at how one family benefited from that approach.

Meet Sally and her family Sally is 94 years old and is now completely bed-ridden after breaking a hip. For over a year, two of her children accepted the responsibilities of caring for her in her own home on a rotating basis. Both kids (who are seniors themselves) put their own lives on hold to care and stay with her. After over a year of heated, unproductive family phone calls, mean and rambling emails and face-to-face screaming matches, the family finally hired a professional mediator. Steven, a social worker and a licensed family mediator, helped Sally’s family to tackle  these questions: 1. What was their biggest caregiving problem? 2. What was the goal in solving the biggest problem and could the goal be made a reality? 3. How would solving the biggest problem help solve other, smaller issues?

In order to help the family answer these questions, Steven conducted a series of step-by-step decision making meetings that included discussing:
• Realities of our health care system, agencies, services and care homes.
• What are the best solutions for Sally and her two caregiving children?
• Should the adult sons be paid for their work and where would the money come from?
• Where else could 24/7 care be given?
• What roles could other family members play?
• What’s the back-up plan?

Steven gave them frameworks and ideas to work together to find a workable solution. These facilitated family conversations took weeks of dedication to try and get the family to move past the status quo—which was no longer working. Taking the significant step of hiring a professional third-party mediator who knew the health care system and care issues was exactly what this family needed to add logic, respect, and develop a plan that would work for most. Without taking that radical step, the family would have not been able to move forward with a new plan that would work for Sally, her two adult caregiving children, and most of the family. Sally’s family is now ready to make big care decisions and is anxious to tackle the smaller issues, one by one. They are thankful for Steven’s experience and insights to move them, finally, in a positive decision making direction that now allows them to make informed decisions more quickly and respectfully.

Decisions, decisions(img 3)3. Implement, test and refine

Making important caregiving decisions is a huge task that deserves recognition and praise. Unfortunately, that is not where the work stops. In actual fact, what really matters is making good caregiving decisions that are real, timely, workable and measurable.

Meet Daniel and his family Daniel’s mother is 71 and has early signs of dementia; his father, 80, is dealing with depression. Neither parent is now able to care for themselves, let alone each other. After much effort, stress and some difficult family conversations, it was finally decided that Daniel’s parents would leave their apartment and move in with Daniel’s family of three active teenagers and Jazzmin, their blind cat.

Daniel created a written step-by step plan of all the things that had to be done to make for a successful move. He decided what furniture was coming with his parents, what to sell or donate, and how to make his home welcoming and inviting for his parents. All the paperwork,  including moving notices to doctors, dentists and the landlord, were completed.

Before his parents moved in, his own family decided that there would be a two-month trial period to allow everyone to adapt, comment, complain and cope with the new living arrangements before making any major changes to their plan. They were very wise to assume that this would be huge adjustment for all, and to acknowledge that there might be frustrations and challenges.

To help add some logic and wanting to keep their sense of humour, the family set up a flip chart that specifically tracked:
• Expectations of all family members.
• How was each family member adjusting(or not) to this new plan?
• How truly willing and committed was everyone to the success of the trial?
• The funny moments and successes during their first two months of living together.
• Expected or potential problems that arose.
• The big surprises that no one had even thought of.
• Did the living arrangement improve over time?
• Was the plan succeeding, failing or just ok?

After the trial period finished, the family reviewed the pages of ideas, comments and issues documented on their flip chart. They wanted to understand if this major decision was the correct one to have made and if things were better now that they were all living under one roof. As a family they discussed the following:
• In general, was it a good decision to move Daniel’s parents into his home?
• Who did and didn’t benefit from the decision? · What worked and failed during the trial?
• What were the unexpected benefits or nasty surprises?
• Was two months the right length of time for a trial?
• And (in keeping their sense of humour), how was their blind cat Jazzmin coping?

Daniel’s family learned that a two-month trial was long enough for them to evaluate the new living arrangements. It gave them insights, experience and information with which they could adapt and improve the situation. By sharing their decisions making challenges and solutions, these three families have given us insights, new ideas and fresh ways to look at our own caregiving decisions.

Can we learn from their examples to help us adapt, change or modify what they have been able to accomplish to help each of us meet the caregiving decisions facing our families? Perhaps the best decision today was to read their ideas, learn from them, and have the tools, confidences and courage to tackle our own caregiving decisions. After all, life a gift, shaped by our decisions.

Mary Bart is the chair of Caregiving Matters, an Internet-based charity that offers education and support to family caregivers.

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