It's compassionate for dementia caregivers to omit unnecessary facts
"Minding Our Elders" columnist Carol Bradley Bursack says while it's understandable to want to tell the truth, it might not be the best course of action in this case.
Dear Carol: My mom moved into memory care a couple of years ago but per her wishes, we kept her condominium. Now, her dementia is more advanced, and the cost of her care is forcing us to sell her property. We’ve brought her the personal items she wanted, and she seems content with that. She no longer asks about her property.
The problem lies in a disagreement between my brother and me. Do we tell Mom we’re selling the condominium? I say yes because it’s the honest, respectful thing to do, but my brother says no because he thinks that it would upset Mom for no reason. Not telling her seems to be a form of lying. Who’s right? — CH.
Dear CH: My heart is with you and your brother. Making decisions that affect a parent living with dementia often causes conflict between well-meaning family members.
Let me commend you both for remembering that respect is vital to good caregiving. The conflict arises when you are considering what approach is most respectful. As with so many caregiving situations, clear answers can seem elusive, but in this situation, I agree with your brother. Here’s why:
Consider first that your mom has enough of her personal belongings to feel content, and she no longer asks about her condominium. Knowing this, it’s good to remember that if she has times when she asks about “going home” (this is very common), it’s unlikely that she means the condominium. In fact, if she’s referring to a physical place it’s more likely that she’s thinking of her childhood home, which at this point would be either highly changed or nonexistent. More interesting perhaps is that currently, experts feel that the person asking to “go home” is looking for reassurance and comfort rather than a physical place.
Let’s pause to clarify a necessary point. If your mom were cognitively competent, of course you’d tell her. It would be her right to know unless she requested otherwise.
Dementia changes this because the person with a compromised brain can no longer make decisions that reflect their best interests. Since your mom’s capacity is limited, I feel that while the conflict is about respect, part of that respect is compassion. If you consider that compassion demands that we don’t make a vulnerable person’s life harder than it needs to be, it might be easier for you to accept your brother’s point.
Again, I commend you for your desire to be honest with your mom. However, with dementia, bending truths and omissions of otherwise pertinent information are often necessary in the name of both compassion and respect.
The question is are we bending truths and omitting information for our own benefit or that of the person we’re caring for? If being direct makes us feel better but causes them emotional upset, we need to rethink that approach. In this case, bringing up the sale could cause your mom distress — and from what you told me, it would offer her no benefit.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.