Planning for Dementia
“If that ever happens to me, put a bullet in my head — you’d be doing me a favor.”
I’ve heard variations on that comment over the years, and I’ve entertained similar thoughts myself, I confess. Existing with a depleted stock of one’s marbles and the certainty that you’ll steadily lose more is bad enough. Knowing that your loved ones will be burdened with your care makes the outlook much more grim.
Perhaps you’ll be one of the easy ones. You’ll docilely submit to the routines of your care: diaper changing, cleansing, dressing, transferring from bed to chair, medicating, feeding, grooming. You may briefly wonder who that person is who comes and goes. You may hear music that scratches at your broken memories. Sometimes you’ll hear voices of unseen people outside your room. Maybe you’ll hear birds calling or dogs barking on the other side of a window. You’re mostly alone, except for flickering images on the TV. Your companions are the citizens of Mayberry, the Cleavers, the Bunker household, a talking horse.
The cycles repeat: You’re medicated, fed, moved from chair to bed, undressed, washed, diapered. Your participation amounts to occasional mumbled comments. You repeat certain phrases endlessly. You can’t think, other than in fragments that drift away almost as quickly as they’re formed. You vaguely realize things should be different. You used to be able to do things, you sometimes say. Lights out.
Or maybe you’re one of the difficult ones, given to bouts of rage. You attack your caregiver with streams of curses or fists and feet. You obstinately refuse to maintain a minimum level of personal hygiene. You urinate and defecate in all the wrong places. You wail plaintively, incapable of being soothed. You reject food, spit out pills, defy sleep. When your frantic energy peaks, you escape, aimlessly searching for your lost past.
You may end up in an institution. The brochures make them look pretty good, but appearances often don’t reflect reality. They appear to have everything covered — excellent medical and caregiving staff, delicious homestyle food, stimulating activities and entertainment, pleasant surroundings. Some have habitats for little finches that flit around behind glass. Some have pianos. Their lobbies are handsomely furnished, well lit, and filled with more flowers than a funeral parlor. All of this is typically a façade, but family members have a strong desire to believe the fantasy.
Even the good facilities rarely come close to fulfilling their promise in the dementia ward. At best you’ll find yourself in clean surroundings with trained professionals meeting your basic needs but rarely going further. The best of them may smile, but they’re strangers. They can give you a few moments of kindness, but there’s no history or future with them — nothing that comes close to a normal human relationship.
Some facilities are awful. I’ve walked down corridors that reeked of urine and Pine-Sol, mingled with undertones of boiled cabbage and fish. I’ve seen hallways lined with residents sitting slack-jawed in their wheelchairs. I’ve seen rooms with three or four people crammed in, with nothing but a small bed and table to call their own, and shower curtains for walls. I’ve read reports of unsanitary conditions, including rodent infestations. I’ve seen call lights outside doors blinking for 5, 10, 15 minutes or longer, with nary a staff member in sight. I’ve heard a woman moaning “help me,” over and over. Residents in nearby rooms could hear her too, of course.
Nothing is familiar — not the sounds and smells that surround you, not a single piece of furniture, not the constantly changing faces, not the food you’re fed. Sometimes you’re not even wearing your own clothes. Instead you’re dressed in ill-fitting, mismatching garments retrieved from someone else’s left-behinds — things you would never have chosen when you were in your mind.
You may receive medications you don’t need and be denied some you do, thanks to confounding institutional policies or mistakes. You may become infected due to cross-contamination. If you’re experiencing pain, you might not be able to report it or describe it accurately. If you want something, you won’t know how to ask. You almost certainly will be neglected. In the worst circumstances, you may be physically, verbally or sexually abused.
If you have the capacity to think and feel at all, you’ll likely live in a persistent state of confusion, wondering how you got there and what’s going to happen to you. If there’s an upside to dementia, it’s that you can’t reflect for long on how lost you truly are.
How do you prepare for the possibility that you’ll be forced to live out a degrading, meaningless existence? How do you protect your loved ones from having to make enormous sacrifices to maintain you with some semblance of dignity while you’re robbed of the ability to give anything back — even a lucid expression of your love?
I struggle with that question more than some because I’m responsible for a person with dementia. I’ve seen cognitive erosion cascade into a neurological landslide. I’ve observed my person’s care — or lack of it — in a variety of institutional settings, but for the most part I’ve been the main caregiver going through the daily grind at home. I don’t want my loved ones to have to follow in my footsteps if I should become the problem with no solution.
Although physician-assisted suicide is allowed in some parts of the United States, the applicable laws typically limit eligibility to fully and consistently mentally competent adults who have a terminal illness with a prognosis of six months or less to live.
If dementia is in my future, I can’t empower anyone to give me a fast exit. I would have to end my life on my own, while in my right mind, giving up whatever precious quality time I had remaining. My loved ones would likely experience grief following my departure, anger over my irrevocable act, and overwhelming guilt for not having prevented it. The gift of not having to deal with my decline would not be a sufficient tradeoff for the pain I would inflict. For me, suicide is not an option.
Making my wishes known in advance seems sensible, but I think it’s a bad idea. I don’t want to tether my loved ones to a promise that might turn out to be a poor solution for reasons none of us can guess at now. Add to that the fact that I don’t know what my wishes are, and our “frank conversation” would probably be circular and distressing.
I could offer reassurance that I trust them to make the best decisions they can, and that I don’t want them to make the same accommodations I made for the person I’m caring for now — but that feels disingenuous. I am an example, after all, and whether my present choices are good or bad in hindsight, I can’t expect my loved ones to ignore them.
A Better Way
In a perfect world (ignoring the fact that dementia wouldn’t exist in a perfect world), I would have multiple living quarters adjacent to my loved ones’ homes, so that each could take a turn managing my needs. The state would provide a team of three or four helpers to handle my basic requirements and provide some company and stimulation. One could take weekday shifts, another evenings, a third weekends. A fourth could serve as backup.
My near-and-dear ones would be responsible for overseeing my care — creating menus, shopping for food and necessities, planning activities, managing my business issues and taking me to appointments. They could spend time with me on their own terms. They would keep each other informed of my condition and make arrangements to transport me back and forth so that no one would be permanently burdened with my care. I can imagine this best-case scenario being workable until my natural end.
Despite the village it would take, the cost might not surpass the current hefty taxpayer bill for maintaining dementia patients in institutions. Still, I doubt there would be much support for it, even if someone with the requisite skills were actually to develop a concrete proposal. It would have to overcome a mountain of skepticism among those willing to consider the concept, and an Everest of opposition from the existing care provider industry. This scenario is not for me unless I strike it rich.
There is one other option, which I’ve settled on by default, but it’s based at least as much on luck as on determination: Avoid getting dementia. There are lifestyle choices that can lower a person’s risk, and I’ve changed some habits to make them part of my routine. With so many factors that can’t be controlled, it would be foolish to ignore the things I can do to make a difference.
I exercise most days, eat mindfully (especially avoiding sugar), and take supplements to target my particular health issues. I sleep well and avoid stress. I challenge myself professionally and creatively. I put energy into making my home more inviting. I commune with nature, even if it’s just pulling weeds or pruning rosebushes. I interact with people who nourish my soul. These things improve my quality of life, and in addition to lowering dementia risk may stave off killers such as heart disease, diabetes and many cancers.
I would like to live long and well and die with as little fuss as possible. I dread becoming so feeble that I lose my independence — but most of all, I dread losing my mind. I might not feel as apprehensive if our American Way were not so pernicious for the old and disabled, requiring separation from home and family in so many cases. Our loved ones deserve better. We deserve better.
We should pressure our elected officials to come up with solutions that don’t necessitate a choice between storing the infirm in giant filing cabinets for weeks, months or years of their lives, or robbing their loved ones of huge chunks of their financial and emotional resources. Our current rotten system is one of our country’s greatest errors. Whatever stage of life we’re in now, we’re all heading in the same direction. Few of us will escape the bitter rejection of ageism unless we resolve as a society to eradicate one of its most heinous practices: throwing people away.