Today sucked. I put my mom in hospice care.
I had only heard of hospice in passing before my mom and I started on this journey. It’s her journey – I just feel like I’m riding along with her, mostly unwilling but fully aware of what’s going on before me.
Hospice connotes very negative things, chief among them is imminent death. Because that’s what it is – when a doctor has determined that a patient’s prognosis is terminal (death within 6 months), hospice care is put on the table among the options available for a person’s last days on Earth.
It’s weird talking to strangers about the finality of my mom’s future. I mean, we all know it’s coming, some day, but talking in such nuts and bolts terms to total strangers is just weird.
But then again, everybody’s a stranger until you get to know them.
Of course, I feel like shit because I feel like I’m the one making these decisions for Mom (because she can’t – and wouldn’t even if she could). It’s a heavy burden I wouldn’t want anybody else to have to bear, but bear it I do.
It sucks.
Preface: I’m coming from having gone down this path with my mother and my mother-in-law.
It’s an ugly reality, but health is simply a measurement of how slowly we are dying. Your mother is not healthy. Dementia will not kill your mother, it will be something else, something that is minor and silly and should have been curable, if not preventable. My wife’s mom succumbed to a UTI. My mom starved to death. The dementia patient is unable or unwilling to accept and act on the treatment they need to stop a seemly needless death. You cannot change this eventual outcome.
Hospice is about easing the transition into death while trying to preserve as much dignity as the disease will allow. You need to let the hospice caregivers guide you and your mom through the process. It’s about the patient— and to some extent the family— being comfortable. It’s not about life-preserving care. It’s about an end to suffering. It’s not about resuscitation, ventilators, or intravenous feeding extending things into more months or years.
Sadly, “Mom” will be gone soon, if not already, but the body will go on for a while and the personality remaining will be a faint and perverse shadow of her. Treat her with as much dignity and care as you can muster in the face of the moment and know that you are a great son for doing so.