“Don’t expect to feel good about every decision. Making decisions is like setting boundaries. You have to do it, but it will never feel good.” Anne Tumlinson, Daughterhood.org
Making decisions as a caregiver is too often done under pressure while feeling like we don’t have enough information or experience. Certainly, health decisions are the most stressful but financial decisions are a close second. The best way to make these types of decisions is do it as care partners.
Even the strongest of teams will have differences in goals and needs. You may want your elder to stop driving while they want to keep their independence. You may want them to do every treatment available while they may feel quality of life is more important than quantity. I understand how difficult this can be. After all, a decision to keep on driving may mean you have to deal with the consequences.
Multiple honest, intentional conversations are key to creating and fostering a team. Honest means admitting that mistakes may be made because of inaccurate information, even an unwillingness to see the reality of the situation. But decisions made together help stop the blame game and hopefully the guilt. A decision made as a team allows you to stand as a united front if other family members are unhappy about the results. If you can’t agree on a decision, then accept the decision of your elder. But don’t wait to open a discussion on what to do next if things are not working out as planned. This allows you to continue to work together as a team instead of taking a stand that harms your relationship.
Healthcare, financial and safety decisions are complicated. Researching options for your discussions is great, but it takes significant time and effort, and there are often gaps in knowledge because you don’t know what you are looking for.
You are more likely to get clear guidance by talking to a professional, like an elder law attorney, a Medicare/Medicaid specialist or an Aging Life Care Advisor™. Yes, there is a cost to this, but in the long run you will get correct information and often save money and heartache. If there simply is no money for a professional, then seek the guidance of your local Office on Aging who can help you find community services.
When someone is living with a progressive brain disease, then making decisions as a team is not possible in the middle to late stages. At that point, not making a decision and waiting for permission from the person is dangerous. This is why it is so important to have those honest, intentional conversations early on in caregiving.
Having a care team that goes beyond you and your care partner to make all the strategic and tactical decisions will help relieve some of the tension and can help you find a compromise. A care team will also bring in new ideas when we are so consumed with our task list that we can’t see the forest for the trees.
The only thing certain in caregiving is that things will change. What worked last week or last month may no longer be best for you or your care partner. Did you notice I said what worked for YOU, the caregiver, may no longer work? You have the right to have a life during caregiving. Because my mother and I were a team and kept communicating with one another, when I told her we needed to do something different because my health was a risk, she agreed to move into assisted living, something she had sworn she would never do.
Anne Tumlinson nailed it when she said don’t expect to feel good about every decision. So often it feels like none of our choices are good ones. Making caregiving decisions we feel 100% good about is a myth, but like setting boundaries, we have to do it.
Whether you are struggling to make a decision or second guessing one you have already made, tell yourself what I tell myself:
“I made the best decision I could for today based on what I know today. I know things will change and I may have to revisit this decision, but that is OK.” Then let go of the guilt.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is the author of “Your Caregiver Relationship Contract and “A Relationship Contract for Dementia Caregivers.” Your Caregiver Relationship Contract is available in both English and Spanish. It explains how to have an intentional conversation and the how unspoken expectations can cause problems during caregiving. A Relationship Contract for Dementia Caregivers explains how important it is to learn how your person wants to live their life out and how you, the caregiver are the most important person in this relationship, giving you tips and tricks for this journey.
Click here to learn more about Your Caregiver Relationship Contract or here for the Spanish version: Su Contrato de relación como cuidador de un ser querido. Click here to learn more about A Relationship Contract for Dementia Caregivers.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call
