Navigating, arranging end-of-life care for mom
Dear Carolyn: I think I’m to the point of needing end-oflife care, or soon will be, for my mom. It’s overwhelming to know what questions to ask, along with all the hard emotions. I know you’ve been through this — any advice or places to turn to get a grip on all this? — Anonymous
Dear Anonymous: I’m sorry. Reputable hospice providers are a great resource for almost all of this, so ask your mom’s doctor. Some social workers specialize in end-of-life issues, too, and the federal eldercare locator at bit. ly/3UNDg9p can help you find local providers.
In my experience, the kindest gift we can give people at the end of their lives is our willingness to listen without letting our own stuff get in the way. Ask your mom if there’s anything she wants, needs, wants to say — and assure her you are there to meet her needs the best you can, and “please don’t worry about upsetting me.” Be prepared with basic incremental questions, like, “I want to honor your wishes. Are you comfortable talking about them?”
This is going to sound strange, but those times you can barely breathe are memories you might come to treasure. It is good to know that kind of love, to feel it viscerally, and to be there for it in all its forms.
Readers’ suggestions:
■ Have you talked to your mother’s health care providers? Lawyer? Accountant? They can all help to make sure you have the forms and information you need — as can hospice. Contact them sooner rather than later, especially if your mother is still at home and wants to die there. But, as Carolyn said, the most important thing is to be present for your mother and listen to whatever it is she needs to tell you.
■ Some hospitals have outpatient or community-oriented palliative care teams. They work with patients and their families every single day providing the kind of guidance you are seeking.
■ I’m a big advocate for having those important end-of-life conversations. It’s always “too soon” until it’s too late. One helpful resource is theconversationproject.org.
Anonymous sent an update to the next chat. — CH
Dear Carolyn: Thanks for answering my question last week. My mom made the choice to go into hospice, and my brother and I did everything we could to honor her wishes. Hospice was amazing. Mom declined rapidly but held on for 40 hours of “active dying” while we sat at her bedside. Then I brought my dog in at the nurses’ urging, and as the dog lay on my feet, 20 minutes later I watched Mom slip away peacefully. — Anonymous again
Dear Anonymous again:
Thank you, too, for coming back to share this at such a difficult time. I hope it’s especially helpful to someone who knows nothing of this process besides fear. My condolences, and may your mom’s memory be a blessing.