This is the eighth installment in the Critical Dementia Skills (CDS) series. For more information on the series, start HERE. You can also click on the CDS tags in the blog for more.
Dementia is a condition that isolates many care partners in ways that go unnoticed by those not in that position. An example of this the loss of making decisions together with the person living with dementia, causing a shift in roles.
Think about all of the decisions that a married couple makes, from choosing which movie to see to picking out a new dishwasher, to life-changing ones like buying a home. For the many couples who are impacted by dementia, the spouse who is caring for the other living with dementia can be suddenly thrown into a position of making decisions by themselves- and that can be scary. Keep in mind that we always want to be open to feedback from our loved one with dementia; that’s why we use the term “care partner,” to signify a two-way relationship. At the same time, there is little doubt that eventually, the spouse with dementia will not be able to offer input on certain, if not most, matters.
In our support groups over the years, many care partners have reported loneliness and stress in having to decide without having their best friend to confer with when it’s time to repair or replace the car or make another important choice. Having someone to discuss options and preferences can be comforting, not to mention having someone with experience and expertise in areas of finance, property, home repair, and more.
Whether you are a care partner or supporting a care partner, it is important to concretely recognize the loss of a decision-making partner. Perhaps if you are supporting a parent who is a care partner, one could say to, for example, their mother, “How are you handling choosing between the new medical insurance options? I know that dad was typically comfortable in that discussion.” The next step is to write down a plan on how decision-making will shift to look differently. Start by placing decisions into at least three different categories, knowing that it is appropriate to consult an outside expert:
- Decisions that you can still make with your loved one who has dementia, especially when it impacts them directly and you can get a sense of their preferences
- Decisions that you want to make on your own
- Decisions that you can make with a family member or good friend, either because it’s fun to have company (picking out a paint color) or it can be intimidating (purchasing a vehicle).
Whatever the case may be, know that while this can feel lonely, you do not have to do this alone.
Questions for you to think, write down, and share in the comments section (any or all):
- If you are a spousal care partner, have you felt a loss of decision-making to any extent?
- If you are an adult child and went to your parent or another adult for advice, how can you shift?
- What decisions, if any, can you still make with your loved one?
- Have you already started asking others to help you in a decision, of who could you ask?
Thank you for reading this far and for commenting. Let’s tell hundreds more care partners about this concept by sharing the article. God bless you.
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