No goodbye: Dying with Lewy Bodies Dementia
Updated: May 25
Disclaimer: This post contains information and opinions from someone with no background in medicine or science (proceed with extreme caution). Always consult with your own trusted medical and legal practitioners before making any decisions about diagnosis, treatment, estate planning, or outcomes for dementia or any other condition.
Our loved one has begun to die from dementia and am writing this to help you know what to expect when helping someone with this nightmarish and incurable condition. LBD is the second most common form of dementia and seems to affect more men but women are not immune. If you are struggling with losing someone, please do not suffer in silence and find a support group near you or on social media (Facebook) or both. You will need help. There are quiet heroes who suffer through this, too, (maybe coping better than you on some days) and they will support you each day.
Since Monday, our loved one (who is 81) will not eat lunch or drink liquid (including the Magic Cup, his favorite orange ice cream, and whose name sounds so much more comforting than reality) although the caregiving staff at the nursing home says he does OK eating breakfast. He stares a lot with wide eyes like pale pools built into the abyss – a place he does not belong but this cruel existence has never been a choice for anyone. He is unable to speak except in whisper with unintelligible words and his mouth is sunken since no one bothers to help him with dentures for puree food that the kitchen staff prepares at the nursing home. He cannot eat anything else but this baby food and thickened liquid (premade or with thickening powder added to any liquid.) Without this, he would choke to death as food and drink will always enter his lungs. Judging by his raspy cough, this aspiration is unavoidable since he may not be sensing how to swallow so food and drink always go down the wrong pipe. In the hospital bed, where he stays all day and can be adjusted into various lying or upright positions, he has a catheter tube from his penis to a thick plastic bag on the floor that holds his pee. Today, there is fresh poop on the bed beneath him though he has not yet sat on it and gloves and wipes seem to handle the worst but it’s never enough. My rage is for his loss and ours. I want him to die because it’s what he would want.
This decline has all happened since July 2016. He had begun having obvious memory problems since 2012 but since 2015 he has no idea who he is or where he is nor does his memory last longer than seconds. He does not remember his parents or friends, but he does seem to know that we are familiar (before April 2017) even if he may not know our names (we do not ask because it does not matter.) He cannot walk but can sometimes struggle to hold a utensil or lift a plastic cup to drink with the same effort as a weightlifter. He no longer enjoys music and, when he speaks, there is little but a whisper and nothing to comprehend with words strung together into no meaningful connection except perhaps to him.
Compare this to December 2015 when he is playing piano (although not quite as well as before since the illness has stolen his ability to read or to read music or to drive since about two years earlier) and enjoying company, wine, laughter, and food with our family. We are fortunate that he is in hospice and receiving what most would call compassionate care but I consider meaningless suffering. After talking with people in an online dementia support group, it seems there is no alternative even in states with legal assisted suicide since the person with dementia presumably cannot consent to die due to their illnesses. This is ridiculous, of course, especially if you put these advance directives in writing so I am unclear whether this is actually the law or one person’s interpretation. Either way, let people decide for themselves how to die and to decide without interference from anyone else before they are diagnosed with any fatal ailment.
For him in April 2017, there is no comprehension for anything or anyone around him at the nursing home including two women nearby – one in a wheelchair and the other using a walker and sitting on a couch – each in their own dementia haze. He is also in a wheelchair, with a 1.5″ bedsore on his back and another smaller pressure sore on the sole of his right foot. He sleeps and wakes with glassy stare at the wall-mount flatscreen TV above the fake fireplace mantle as John Wayne ends and Diamond Head begins with Charlton Heston, another tough guy who plays Moses, loves guns, and succumbs offscreen to complications from Alzheimer’s.
In his once healthy life, he coaches our second grade T-ball team (the Cubs); plays piano, clarinet, flute, sax, ukulele, and writes songs; plays sax in the Austin Community College Jazz Band at the Austin Crest Hotel on Friday nights (now the Radission at Congress and 1st Street); teaches me to read music and play clarinet; and also drives a school bus part-time so he can finish building the home that he designs and builds for us. All this after teaching math and serving as a medic in the U.S. Army; earning his Masters in Social Work (with honors) from Washington University in St. Louis; getting married, having me (an only kid to two only kids); and starting to pursue a Ph.D. at UT after moving to Austin from Miami (until realizing he would rather build our house) while Mom continues her career in social work until she begins in retail with Wal-Mart and then JC Penney until retirement two years ago to help care for him (although he denies he needs any help even though he has not driven a car for two years by this point.) He is a complex man with Renaissance interests and pride.
It’s hard to know when his loss begins but a longtime neighbor, who knows us for more than 30 years, notices him walking around a lot in the yard but not accomplishing much in 2015. A few years earlier, Mom and I see him build a rock wall that stands but looks haphazard even though he thinks it’s same as always. He seems fine around 2002 but then there are more changes including no longer wanting to drive and retiring from driving the bus by the mid-2000s. Sometimes, about every six months, he falls out of bed during a nightmare or intense and thrashing dreams.
He no longer wants to do the crossword or the Jumble in the newspaper saying that he’s “bored with it.” How does someone suddenly get bored after doing the same thing for more than 30 years without complaint? He also doesn’t seem to read anything but will skim and then claim to know what an article says but not be willing to recap the content. His scans at the eye doctor reveal glaucoma damage (a terrifying blob that engulfs one quadrant on the paper) but he denies there is anything else to consider. Within the past year, we notice the forgetfulness and the paranoia that burglars are stealing his tools, guns, or knives.
Finally, in 2015, a diagnosis – his neurologist suspects LBD and when she asks him if he sometimes “sees animals or people…hallucinations” he calmly says “yes” but does not react nor can anyone prove the diagnosis until an autopsy. He is neither mad nor concerned and does not have any Parkinson symptoms until July 2016 when we walk together during a slight rainstorm but then he cannot make it back up the hill that we have climbed hundreds of times. Luckily, on this usual vacant road, three men come to our rescue to firefighter-carry him back into the house. Even this does not seem to concern him much but he would have been angry and scared had he known.
I do not want him to live another day with Lewy Bodies Dementia but what may we do? It is past time for society to allow legal assisted suicide. He says I will be a writer so this is for him since he can no longer tell his story.
What do you do when you know that your loved one would not want to live this way; and yet, cannot tell us? Once, about a year ago, before the nursing home and late at night, he tells his wife he wants to kill himself but then the thought vanishes again. I understand why Robin Williams left us with such sudden violence by hanging himself with a belt in the closet. No one should suffer this way.
Our loved one continues another day with empty mind and swollen feet and often gauze bandages to protect from skin tears where these arms should grasp a hammer, repair a car, play piano, and hug us. How we miss his hugs.