They Call It "The Journey"

The Memory Care Unit – The Journey
Michael Sedano

Friends have been telling me they’ve found use in reading my columns about living with Alzheimer’s Dementia. “We all face this,” they’ll say. Indeed, it's a deep-seated fear. But no, we won’t all get it. 

Sunset, a metaphor for dementia. Memories flee the extinguishing brilliance of a mind.

No one knows its cause, no one knows what leads to a person developing Alzheimer’s. Vascular dementia results from brain injury, a stroke a fall. Parkinson’s patients experience dementia, Huntington’s patients similarly “sink” into dementia. Dementia shows itself in different symptoms yet for all, gradually, personhood disappears. A functioning organism takes its place. Then the organism forgets how to operate and the body dies. How long?

People say stuff like “My uncle had dementia for ten years” then tío died and his wife was desolate over his symptoms and her responsibilities to care for his body while his person changed. Ten years.

While dementia strikes patients differently, symptoms come like boilerplate copied off the internet. Things add up and symptomatic idiosyncracies turn into permanent deficits. Concerned others with information, ask, does she wander? Does she steal? Does she clean herself? How well can she walk and move?

Those symptoms will happen to us. Some really ugly symptoms come and go already, like not recognizing me. Nearly 51 years together and some days she won’t know my name. She acts all pleasant because at her core, Barbara is a pleasant human being. She'll say, "Michael was here this morning." I tell her my name. "The other Michael," is her response. I hope he was a good guy.

Alzheimer’s strikes the entire family, all your friends, and perfect strangers when they hear about your luck. Perra suerte as the corridos go.

I am dealing with understanding the fundamental nature of cognitive disease: dementia patients face whatever comes next all alone. I visualize watching an angry horizon consuming itself in an oncoming conflagration, standing against its onslaught the solitary figure of my wife silhouetted against the disaster she faces and she's going into it all by herself.

The memory care unit is filled with people going it alone together.

Old people with money form an attractive market for specialty corporations in senior housing. Pasadena Highlands where Barbara lives, stands as a mid-rise monument on its street. Upper floors have Independent Living where couples or singles live free of domestic encumbrances like cooking and entertaining. I see these people downstairs laughing near the main dining room, or out in the lobby going for a ride somewhere. This is their apartment house in a retirement community.

The lower floors house Assisted Living. Attendants work here at one’s call but not beck. Response times are progressive. Walkie-talkies buzz out repeat calls, status reports, someone’s getting there soon. Nothing is immediate, the company imposes no performance standards on its personable employees.

Staff to resident ratios offer consistent presence of a blue-shirted person who invariably offers helpful and pleasant care. I say “Buenos dias” to muchas personas in blue.

The Journey is the name of the memory care unit in the basement. Memory care is 24/7 attendance by a slim team of incredible people. There could be more staff but given the cognitive condition of some residents, more staff wouldn’t improve anyone’s comfort.

The lowest-functioning people will disappear from these hallways onto their hospice Journey. That service comes with a financial consideration, hospice is medical and if you have insurance, it pays.  If you're young enough, buy long-term disability insurance and that will help with your move into Independent Living.

Access in and out of The Journey is a number pad with a 15-second window to open the double doors. The memory care unit is a single hallway with 2-person unfurnished apartments. Residents furnish their own homes. Some have doors, other rooms a passing attendant can monitor. Body smells waft here and there.

Socialization is vital for people losing themselves to the nothing. Residents gather, or are gathered, in the lounge, where an all-day schedule of activities and a minimum of teevee watching seeks constant stimulation. Some hours, an attendant might be playing ukulele leading the residents in oldies. Most residents stare stolidly at the dancing musician, others slouch in semi-consciousness, one higher-functioning woman dances and sings.

Some residents don’t cooperate during balloon aerobics. They refuse to bat the balloon, or complain, “don’t hit that at me!” The attendant does a lot of jumping and reaching and cajoling since only one or two have muscular coordination to whap that globe. Most stare at the floating toy, some watch, aim, rare back and swing only to make finger contact to cheers and attaboys from the attendant and a couple of residents.

Nothing is easy, nothing is normal. Although some are agitated, these are gentle souls who need to be protected from everything because a dementia patient is simply present.

A frail shell of a woman waits inside the door. “I need you to do something for me.” She doesn’t have words for the keypad nor the door. She points. An attendant comes out and guides the woman to the lounge.

“Have you seen my sister Edith?” a woman sitting in the hall asks. Residents might hang around the meal room, where mealtime extends hours to accommodate random dining habits.

A dapper fellow limps down the hall saying good morning. He carries on conversations about the day, the surroundings. A medical doctor, he’s always been named “Doctor Name,” and that’s how staff addresses him. I saw him for a medical issue thirty years ago, when he was a different man. When he was.

My wife is high functioning most of her hours. On my morning visits we have lively conversations. I’ll drive her to a favorite restaurant, the local coffee roaster for a hot chocolate like we used to do when we lived together. We cannot live together, she knows that. She falls. She forgets. She sinks into depression, we’re together in that one. She sundowns, sometimes badly.

Alzheimer’s and other dementia sufferers have functional cognitive faculties for parts of their day. Mornings are great. As their bodies wear and cognitive resilience wanes, the person begins to fade. Desperately she asks the same information, what day is it. Was it hot today? What day is it? What is hot today? What is today?

She doesn’t know what she's doing. She wants to know, so she asks. That’s good. Me, I’m filled with terror. I still cry a lot. What if sundowning doesn’t go away tomorrow? That’s on those lists of symptoms, that permanent absence. Those frail souls wandering the halls, live here and that's all. They live.

Gente have alternatives to memory care. It’s frightfully expensive. It's dignified.

Less expensive but costly in other ways is 24 hour home care. An organization at the heart of this service is A Place for Mom. They’ll come to your home, assess needs, and place an employee, or two, in your home. This person will live in their own space in your house and works four hour shifts.

A few weeks ago I expressed how devastated I am at what has become of a fifty-one year lifetime. We’re 51 this August 31. We almost made it. We're happy when we're together now, these weeks into the torment. Barbara's husband is adjusting to real life again. 

I still listen to hear if she's coming to my office, or if that sound is her calling or flushing the toilet. It won't be. She doesn't live here.

But I'm getting out there among 'em again. I went out with friends to eat, hasta I went out at night to a nice restaurant and got a free meal! Friends and familia will get you through it, folks. 

It will always be bad. So it goes.

Announcing our wedding date to la familia, 1968