*details changed to protect anonymity. . .you know the deal.
|original image from here.|
"With her went my future, my life is filled with gloom.
So day after day, I stayed locked up in my room.
I know to you it might sound strange.
But I wish it would rain."
So day after day, I stayed locked up in my room.
I know to you it might sound strange.
But I wish it would rain."
~ The Temptations
"I look at her and she look right through me. Like she don't even know me." He sighed hard when he said that. His face washed over with a sorrow that was indescribable. "And the things she say. They so mean sometimes. She even use pro-fanity sometime. One day she fought me with her fists when I wouldn't let her go walking out the house at three in the morning. She cursed me bad and told me her daddy would shoot me."
"Has it gotten worse?" I asked that mostly as a filler question. I mean, how much worse could it get?
Sixty-two years. That's how long they'd been married. If their marriage wanted a discount on seniors' day at Publix, it would qualify. Matter of fact, if their marriage wanted to get its prescriptions from the Grady Senior Pharmacy, it could. It sure could. Because sixty-two years? That's a whole lot of years.
They always dressed up when they came to see us. Almost like they were going to church on Easter Sunday. Today she was dolled up in a red suit with ivory embroidered embellishments and a perfectly matching wide-brimmed hat. A long red feather wrapped around the front of the hat and then angled upward like some fancy antenna. Her legs were crossed at the ankles and her flesh-colored hosiery were crinkled at the bottom. Both of her hands were clasping her red pocket book which she tapped in concert with these head nods that came with every word her husband spoke. If I'd been looking through the window and wasn't in the room, it would all look normal. One person talking and another affirming his words with facial expressions and gestures.
But that isn't what this was. Her head nods were mostly when she was confused. She'd learned to smile and dip her chin to keep anyone from knowing the truth. But eventually even she didn't know what was true from what was vapor. Vapor. You can see it but when you try to grab it or touch it you can't. Then it disappears. Yeah. Like that.
"Is there a pill I can give her? To help her be her old self?"
It broke my heart to tell him that, while there are some pills FDA approved for dementia, they seem to do the least for patients with advanced symptoms like his wife. And the side effects aren't worth the negligible therapeutic benefit. We talked about keeping a routine and maintaining familiarity in her surroundings. And how those things would help far more than a pill could.
"But see, I worry most about when she by herself."
I raised my eyebrows high when he said that. I'm not sure if he caught it or if he'd just decided to keep talking. "Like when I go to church or something. I be worried she gon' do something."
I needed to make sure I wasn't misunderstanding him. "You . . . .you guys leave her alone?" I asked. Then I felt bad for talking about her as if she wasn't there. "Mrs. Pike? Are you home alone sometimes?"
She nodded and patted her purse again. "Your home is your haven. You got to make sure everything is right in your home. Keep it tidy, cawse that's godly." Then she smiled at me. I smiled back.
"Mr. Pike? Is there someone who comes in when you leave?"
"Naaw. But it jest be for a few hours when I go someplace."
"Uhh, okay. Well. . .sir. . . I have some concerns about your wife being alone. I don't think that, at this point., that's such a good idea."
"That's why I wondered what y'all could give me to give her. So she could keep steady."
"I wish there was something, sir." I scooted my chair closer to him when I said that. He kept talking as if I hadn't said that last part.
"She turned on one of the eyes of the cook top yesterday. She coulda burnt the whole place down."
"That's why I worry. It's almost like having. . . I don't know. . . a minor in the house. Somebody should always be there, you know? Like never leaving her all by herself."
Mrs. Pike pointed at me and nodded hard. "Mmm hmmm. You got that right. I always say that you 'posed to keep an eye on the chil'ren. You can't leave 'em by theyself for even a second." Mrs. Pike poked her lips out for emphasis when she said that.
But Mr. Pike? He got that. He got the point.
"Miss Manning? We can't afford no 24 hour caregiver. And now I'm up in age so I can't do what I used ta. But it's just us. And I gots to go to like Krogers and church and stuff. Even if I skip church I got to step out of the house sometimes. And our chil'ren they got they own health issues."
I thought on that for a bit. Here was a couple in their mid to late eighties. They'd lived long enough to have children who were now senior citizens themselves. Some of whom had already passed on and others needing just as much attention as their mother. If not more. This was awful.
"You might need some help, Mr. Pike." I finally said it, even though I'm not sure he heard what I meant.
"Like a home nurse to come help out?"
No, because that costs a lot of money. More than they had for sure. And more than their state and federal health care would cover. I needed a diplomatic way to say that.
"I was thinking. . .like. . .maybe a . . .some kind of facility where she could have professionals around to assist her at all times. Like. . .yeah. That."
That's when I could tell he got it. All of the color washed out of his face and his mouth just sort of hinged open with no sound coming out. He swallowed hard and then spoke. "You talking 'bout a place where she'll stay? And not live at home? Like a. . . . a home?" His lip quivered when he said that. And, I can't even lie, when his did, I felt mine starting to do the same.
"Is that something you all have ever talked about or thought about?"
And that's when it happened. This grown man fought with all of his might but lost against the tears that came shooting from his eyes. He quickly pressed the heels of his hands into his eyes and turned his back away from his wife. But it was too late.
"Jasper?" she spoke. That lost look in her eyes was replaced with the innate concern of a mother and wife. One that had been married to her husband longer than Hawaii has been a state.
And me? I saw all that and immediately began blinking like I had some kind of tic. In my head I could hear David Ruffin crooning with his gravely voice:
"My eyes search the skies, desperately for rain.
'Cause raindrops will hide my teardrops.
And no one will ever know.
That I'm cryin'... cryin' when I go outside.
To the world outside my tears, I refuse to explain.
Oh, I wish it would rain."
For Mr. Pike's sake--and my sake, too--oh how I wished it would rain. Right in that room, right at that moment.
"I'm okay, dearheart." He cleared his throat hard and tried his best to smile.
"Is you crying? What happened? Something with one of the chil'ren? Somebody in the family? What?" Mrs. Pike was serious. She wanted to know. She looked from side to side at me and then him. She wanted answers.
And so her husband carefully responded. "We jest talking about ways for you to be safe, that's all. Like maybe having you be some place where folks can see about you all the time."
"I think it's good to see about the elders," she replied with a bright smile. "That's a good idea, Jasper."
"But. . . we thinking about . . . maybe jest a place where you would live instead of at home. It will be some nurses and people there who can see about you better than I can."
She stared at him for a few beats and then cocked her head sideways. "Will you be there, too?"
His lip began trembling again. "I could come to see you every single day. I can do that."
"Well. That's nice. That would be nice for you to do that for me. And maybe you could get Mother and Daddy to come sometimes, too." She smiled warmly and sighed with a synchronous pat of her pocket book with her hand. "I was always one who liked having visitors and entertaining company. But I need advanced warning for all these folks come visit, now. You know, so I can make sure I have enough for everybody. Especially Mother and Daddy."
Mr. Pike just stared at her like she was speaking another language. Partly because her parents had long since passed, but mostly because all of this was just too much. Much too much. Finally, he gave his head a tiny nod.
Next we spoke to the social worker and talked all about options. Like, first I wanted to see for sure if there was someone, anyone in the family who could fill in the gap for them. A grandchild? A doting niece or nephew? Somebody. Anybody. That or some money somewhere that we hadn't considered that might allow for them to get in-home care. But what we found out was that while there were lots of resources out there, none of them were enough for what they needed. At least to be able to stay at home.
Mrs. Pike would need to go to nursing home. Soon.
After the social worker left, a nurse came in to assist Mrs. Pike to the restroom. As soon as she stepped out, I noticed Mr. Pike's eyes leaking again and him quickly reaching into this pocket for his handkerchief. None of his efforts to remain stoic were working. Lord knows he tried, though.
"Mr. Pike, sir?"
"I just want you to know that you aren't giving up on her or letting her down. I just want you to know that." It was all I could think to say.
He looked up at me, the watery veil over his eyes now spilled onto his cheeks. He patted them with his hankie and took a moist breath inward. "I know that," he finally said. "I'm jest sad, that's all. She been a good wife to me and I know I done the best I could to be a good husband." He dropped his head when he said that part. It was all too much.
Where were those raindrops when you needed them?
My eyes began stinging again and I felt my breath quickening. "Oh sir. I'm so sorry, Mr. Pike. I am." I did my best to brush away the tears that had already started falling from my eyes. If only I had a few raindrops to hide them.
He sniffled and shook his head. "You know? I guess I always thought the worse thang would be losing her to death. But now as I think of it, something about her leaving me all at once seem so much better than this. She bein' taken away from me piece by piece. And that? That hurt . . . way more." He started weeping again when he said that part. This time his shoulders were shaking and the corners of his mouth were turned downward like that of a child. It broke my heart.
God, how I wished it would rain.
I was about to (try to) say something in response to that but was interrupted by Mrs. Pike shuffling back in through the door. It was probably for the best.
"Jasper, did you see those clouds out there? It look like a storm for sure. Is your lawn equipment covered up?"
He paused before speaking and glanced at me. I already knew that they lived in a senior highrise and that there was likely no such lawn equipment to bring inside. Mr. Pike released a weak cough into his kerchief and acquiesced his wife. "Don't worry about that, dearheart. I know for sure it ain't no equipment out there that could get wet."
"You sure? 'Cause some of it could rust over and end up no good. I hope you sure."
"Yes'm. I'm sure."
"I have a feeling that your husband isn't the type to leave anything standing out in the rain." I reached for her hand when I said that and she grabbed mine in return.
"You right about that, sugar," Mrs. Pike replied. "You right about that." She nodded and tapped her red bag once more.
Her husband just watched her with this dichotomous expression; eyes consumed with sorrow and brimming with tears coupled with a brave, quivering smile. I took a mental snapshot of it against my will. And it has haunted me ever since.
I know to you it might sound strange. . . .but every time that image floats across my mind, I wish it would rain.
Dementia and mental illness have always terrified me. Here's a few other posts that I reread today as I reflected on this couple. Though these topics always stick in my brain when I think about them, writing about them is always therapeutic and feels like a way to honor my patients on that hard road. Honestly, these are probably three of my favorite posts. You may have read them before, but either way, I thought I'd share.
- Zoom. (an encounter with a loved one navigating advanced Alzheimer's dementia.)
- Fossils and Feelings. (an encounter with a patient working through early dementia.)
- Wow. (a close encounter with the aftermath of schizophrenia.)
Now playing on my mental iPod. . . .you better sing that song, Mr. David Ruffin!