Tuesday, November 10, 2015
Things to Know About Dementia, Part 4
For Part 1, click here.
For Part 2, click here.
For Part 3, click here.
19. Shoes and Socks
Some dementia patients seem to develop a peculiar obsession with their shoes and socks. I've already told you about Mr. Laurel, the gentleman at Autumn Leaves who wears mis-matched shoes. And never with socks!
The bank CPA hardly ever wears shoes at Autumn Leaves; she walks the halls all day long either in her stocking-feet, or bare-footed. Or, often, with one sock on, and the other sock left hanging neatly on a hallway hand rail at the other end of the building. Or simply placed on a couch, or dropped onto the floor. One of the secretaries keeps a bin behind her desk for all of the stray socks the CPA - and several other residents - leave behind for somebody else to find.
The lady with Lewy Body dementia can't do a lot of things, but one task she can deftly perform is removing her shoes and socks! The staff will put on each sock, and then her slip-on shoes, and practically as if by magic, she'll wiggle her feet, and they'll be bare! It is uncanny. She, the CPA, and several other women don't regularly take off any other garment except for whatever is on their feet. (There is one female resident who frequently unbuttons and removes her button-up blouses; why do staffers continue to dress her in such a top? Because her husband refuses to admit that his wife shouldn't wear such garments, and he insists that her wardrobe be dominated by them, because that's what she used to prefer pre-dementia.)
In our experience, men don't seem to have the same fixation with bare feet. But Dad did eventually forget how to tie his lace-up shoes. Laces also become a trip hazard, so we took the decorative leather strings off of his rubber-soled house slippers and let him go with the strapless look.
20. Going Home
Where is home for you? It's where you're living right now, correct? When you're at work, and you say you want to go home, you mean you want to be at your current place of residence.
Granted, if where you live now isn't as comfortable or nostalgic an environment for you as the place where you grew up, it's common to say that the prior, primary location of nostalgia for you is your "home."
So, when a dementia patient tells you they want to go home, what "home" do they mean?
During his early years of dementia, Dad could remember his home address with ease. He could recognize our neighborhood as he pulled into it off of the main street. He could identify our house as he approached its driveway. He knew where "home" was.
However, things began to get tricky when Dad would be safely inside the house in which he'd lived since 1978, and ask us when we were going home. He'd be tired, or confused, and he wanted us to take him home.
He'd stand at the sliding glass door, looking out onto our wide patio and the backyard he'd mowed for three decades, and ask whose apartment he was in. Was this in Brooklyn? Our expansive, suburban property sure didn't look like the dense urban environment of his childhood!
That's when Mom and I realized Dad was spending more and more of his mental time in his far earlier memories of New York City. At first, we deduced that Dad was "living" in his former home at 755 42nd Street, in Brooklyn, where he hadn't lived since the early 1960's. As his dementia worsened, Dad "moved" himself back even further, to 832 42nd Street, where he grew up. Several times, he was back to his preschool days, on 41st Street - where home had been for him over 80 years ago.
Where is home?
I've already mentioned the resident at Autumn Leaves who frequently waits in a hallway for the evening bus to Maysville. This resident's wife told us Maysville was a town close to where he'd grown up in rural Oklahoma.
Shirley, the nonagenarian resident famous for her red sweaters, constantly pines for Tahlequah, Oklahoma, where she grew up, raised four children, and buried two husbands. Her daughters say she hasn't been to Tahlequah in over half a century, but she can recall details of the place that sound pretty accurate to us.
The bank CPA appears to have no idea where Arlington, Texas, is (the city in which she's lived most of her life, and where Autumn Leaves is located), but whenever Mom or I mention "Maine" to her, the state where she was born, she usually lights up with a big smile.
Last fall, Dad began what would become a regular ritual of his, mostly in the late afternoons and evenings, during that dreaded "sundowning" exhibited by most dementia patients: "I want to go home."
"When can I go home?"
"I'm going to go home."
Yet he was home. He just didn't recognize where he was as his home. It quickly became extremely upsetting to Mom and me, realizing that Dad didn't know where he was. The one place where we usually feel safest and most secure - our home - had been taken from him by his own brain.
And it wasn't just that he didn't recognize his own home. He began to accuse us of holding him hostage, so he couldn't go home. There were times I'd stand before the closed front door as an obstacle to keep him from walking out into the chilly night air. We installed a buzzer on the front door (he never tried to "go home" through any other door in the house) to warn us whenever he'd try to leave.
One winter afternoon, while it was still light outside, I finally let him "go home," just to see what would happen. I followed him as he stalked down the driveway, got the street, and began arguing with me about going home. But he didn't know which way to go! He had no idea where "home" was anymore. It was so pitifully sad to watch. He simply argued with me, as if I was delaying his escape to his home.
If this happens to your loved one, don't be surprised if it breaks your heart. Their desire to go home is something that most dementia patients seem unable to control. And you can't control it, either. We had a big framed poster of Sheepshead Bay, a coastal neighborhood in Brooklyn, hanging over the fireplace, so I took it down and hid it in a closet, thinking the Brooklyn reference was tricking Dad's memory. We stopped closing the drapes at night, and I turned on the backyard lights when it got dark so Dad could see his patio and lawn and understand he wasn't in somebody's high-rise apartment. Mom and I took Dad on tours throughout his own house, hoping that by pointing out pieces of furniture, paintings, and family photographs, he'd recognize where he was. None of it worked.
We finally figured out that "home" for dementia patients isn't a geographic location. For dementia patients, "home" is a state of mind, a place of peaceful refuge from the confusion and anxiety of severe memory loss. "Home" to a dementia patient may look an awful lot like the place where they grew up - back when, as a child, their responsibilities were far less demanding, and their lifestyles far less complex. But "home" isn't really Brooklyn, or Maysville, or Tahlequah. "Home" is that elusive cocoon of serenity and placidity that most all of us probably desire for ourselves, but which doesn't really exist for any of us.
For people of faith, like Dad was, "home" eventually seemed to become a reference to Heaven. For a long while, Dad's speech remained the most lucid when he prayed, and he had a deep faith that Jesus Christ loved him and heard every word he prayed. Even during his stay at Autumn Leaves, Dad would almost plead with God to be taken Home to Heaven. The Bible teaches that Heaven is the eternal Home God is preparing for all of us who believe that Christ is His holy Son. It is a place of perfection, peace, health, and wholeness.
And Mom and I believe Dad really is now finally Home. He knows he's Home, his memory has been restored, he knows who he is and who we are, and he is at peace in the literal presence of his Lord, the God Who allowed dementia to ravage him in the first place.
So, why does God allow people to suffer awful diseases like dementia and Alzheimer's? It's a question that has haunted me for years, and even now, I can't claim to have found an utterly irrefutable answer. But I have come to understand in a better way how profoundly evil our sin nature is to God. In the same way that dementia thoroughly destroys a human brain, sin thoroughly destroys the purity God desires each of us to have. After all, the Bible teaches that God can only look upon purity. That's the whole point of Jesus Christ, His Son, coming to Earth and dying for our sins. Christ' perfect sacrifice purchases our salvation from sin, so God can receive us as His holy people.
Often, I'm tempted to gloss over the heinousness of sin, or the damage and destructiveness sin can wreak upon us physically, mentally, morally, spiritually, socially, politically, and emotionally. Yet now, for me, dementia reminds me almost constantly of how vile and wicked sin is in God's eyes.
Back when I was a youngster, my dear Dad explained to me who Jesus is, and ever since then, I've believed that Christ provides me salvation from my sins. But it's been during these past eight years, as I've had a front-row seat through Dad's journey with dementia, that I've been forced as never before to evaluate what I believe about God, Christ, holiness, sin, salvation, and eternity.
Now that I'm on this side of that awful journey with Dad, I can say that I'm more convinced than ever before that I am not in control of my life, just as Dad wasn't in control of his life. And you aren't in control of your life, either. So who is in control of our lives? It must be God, right? That's what the Bible teaches. Which means God is holy, Christ is His Son, sin is real and really evil, and that salvation from that sin is essential in determining where I spend eternity.
Not that I understand all of this completely, or have yet found perfect peace in the wake of Dad's "Homegoing." But I believe that I have re-discovered my reason to hope in God.
Indeed, it's the same reason any of us have to hope. The reason is that God truly is sovereign. Which means I am not! Yet He loves me anyway, even more than my dear Dad did.