After several setbacks in the ALW licensing process, Sang and Daniel finally got all the required items signed off by the licensing agency. There were no big problems with the licensing, just time-consuming tasks that had to be completed before they could be officially designated an Assisted Living Waiver facility. The caregivers, including Sang’s sister, her son, and anyone else they might call on for occasional help, all had to be fingerprinted. Even though they’d all had TB tests when Sister Sarah’s first opened, they needed to be tested again. The automatic gate opener needed to be upgraded to meet new fire department standards, etc., etc.
It was months after Mike was officially okayed as a potential ALW resident before Sister Sarah’s license came through, but what a relief it would be to finally get some financial assistance. It seemed that all was in order, but then, oops, although all of the requirements had been checked off, the man who actually issued the licenses retired, and there was not yet a replacement. Phone calls weren’t being answered. It seemed there was no place to turn. Carol Kinsel jumped in to try to move things along, but none of it was easy. I kept hoping, month to month, that there would be a shift.
I was getting closer to rock bottom. The bankruptcy procedures were finished, and I’d come away from that as clear as anyone could from bankruptcy. It stopped the nasty phone calls and letters, but that didn’t do anything to ease my ongoing monthly money challenges. It seemed within reason that Mike’s residential care expenses might soon be at least partially alleviated through the ALW program or through some aspect of Medi-Cal, but in the meantime I was still paying out more than was coming in month after month after month.
Early one September evening, after being out running errands and grocery shopping, I settled in to get caught up with email and paperwork tasks. There was a message from Daniel to call Sang. “Good news,” he wrote, saying I could call as late as 1 in the morning.
I got my hopes up for the good news to be word that Sister Sarah’s Care Home had received the official ALW license. I called Sang.
“Good news, honey! I found very good placement for Mr. Mike!”
She went on in her mile-a-minute style. A hundred dollars less each month. The woman running the place had even more experience than Sang did. Sang knew this because they’d worked together a few years back, before either of them had opened their own facilities.
I was stunned and could hardly process the “good” news. Sang had all kinds of justifications, insisting that this would be best for Mike.
After an abundance of miscommunications, what I was left with was that Mike and Helen were becoming more combative with one another and that there was a risk of someone being hurt during one of their tussles.
I was reeling. My confusion and worry soon turned to anger. Whatever happened to “It okay, honey, we make it work. No worry!”? Or to Sang’s frequent and seemingly heartfelt assurances that they were dedicated to taking care of Mike through the very end?
After a worried and sleepless night, I emailed Daniel to ask for clarification.
As I sat waiting for a response, still stunned by the news that Mike must leave the place where he’d received such good, enlightened care, I looked back over my email correspondence with Daniel. Over the course of a year, from late March 2012 to early April 2013, there were 48 emails from Daniel. Those were only the ones I’d saved. My guess was that Daniel and I had consistently had email contact three to four times a week. He sometimes sent a video of Sang and Mike “dancing,” or photos of Mike outside by the roses.
Emails back and forth had clarified certain details that had been confusing in conversations with Sang. During a visit early on in Mike’s stay at Sister Sarah’s, Sang and I had a long, one-sided conversation regarding various possibilities for the incontinence supplies I was to provide. On my way home I stopped at Target to buy what was needed, then, still in the parking lot, realized my head was spinning with possibilities. Sang had talked about Depends Adjustables, and briefs, Tena Heavy Protection and Always Discreet. I left Target without going inside, which is usually my natural impulse anyway.
A quick email to Daniel had clarified things—Depends Briefs, M/L, best deal at Costco. Together, mostly through emails, Daniel and I had navigated the tricky details of ALW licensing and placement approval. Sometimes the emails we exchanged were simply book or movie recommendations. My hope on the morning after receiving such questionable “good news” was that Daniel could shed some light on this shocking turn of events.
In response to my “I don’t understand. Can you enlighten me?” email, Daniel suggested I come talk to Sang in person. I asked what a good time might be, not wanting to show up for a conversation if there were other visitors. Sometime between 2 o’clock and 4 o’clock was the preferred time that day. At 1:30 I took four supermarket cookies from the stash I kept in the freezer, put them in a baggie, and drove to Orangevale.
On the way to Sister Sarah’s I tamped down my anger with reminders of how amazingly good both Sang and Daniel had been with Mike—what excellent care he’d received there over the past year and a half. I reminded myself that they actually enjoyed Mike. They were lighthearted with him. They had been more than fair in establishing a monthly rate for me. I needed to stay open to whatever Sang had to say.
Sang was always a fast talker, but faster still when she was nervous. As Mike looped past me, he reached for a cookie, took a bite, put it on the bookshelf as he walked past, took another bite on his next circle through, left it on the entry table, round and round, cookie after cookie, while I tried to make sense of Sang’s rapid-fire chatter.
“We love Michael. Always put Michael first!”
But she emphasized that Helen and Mike were a dangerous combination, also that Mike had smacked Ron the previous week, and that families have to know the place is safe for their loved ones.
She started talking even faster.
“Helen not even incontinent. Family pays $4,800 a month. Not about money! Not about money! You like Green Hill Care Home. Wait. You see. Beautiful, sparkling clean tile floors! Better than here! Citrus Heights. Little bit closer. Not about money! We love Mike! Have 30 days before move. Plenty time! October 4.”
Sang pointed to the date already circled on the wall calendar, then started all over again. They loved Mike. He and Helen were dangerous together. Not about money. Not about money. Daniel was nowhere to be seen.
Marg and I visited Green Hill Care Home. It was on level ground with a broad cement walkway leading to the front door. A border of straggly, water-starved plants lined the walkway. No hill. No greenery. Who names these places anyway?
We met with the caregiver/co-administrator, Livia, whom we immediately liked. Livia, her mother, Elena, and a live-in helper usually shared caregiving and maintenance tasks, though because Livia was five months pregnant, she would soon be less available. Elena, Green Hill’s owner/co-caregiver, would take over the main responsibilities in a few weeks, when she returned from visiting family in Romania. Livia’s husband helped out before and after work, as needed, and would continue to do that. Their two boys, 9 and 11, were both were thrilled by the prospects of a new baby brother or sister.
Green Hill itself was gleaming clean and much more orderly than Sang’s, though none of this would, we thought, make any difference to Mike. There were only two other residents, both women, and neither was ambulatory. It was highly unlikely that anyone would get in Mike’s way there. Livia assured us that Mike would be fine with them. It turned out that Sang had actually brought Mike to visit there a few weeks back, and Livia had been to Sister Sarah’s two or three times to see Mike at “home.”
It seemed Sang and Livia had already established that Green Hill Care Home would be a good placement for Mike. Apparently Sang had been working on this for a month or so. However, Mike’s eviction from Sister Sarah’s would have been a less bitter pill to swallow had I been in on it from the beginning.
Marg and I agreed that Mike might possibly do okay at Green Hill Care Home.
The day after we visited Green Hill, I got a call that a nearby three-tiered facility, Winding Creek (again, no curves, no creek), had an opening for an ALW resident. I’d visited this place several times—early on when I’d first started looking at memory care facilities, and again when I realized that Mike’s situation at The Guiding Star was precarious. On each visit I was impressed with the director and with her empathy for dementia patients. She, Anna, assured me that they dealt with a number of FTD patients, and she was certain they could deal with Mike.
Winding Creek’s fees for memory care were more than $6,000 a month, but they did have four ALW spaces. There was always a waiting list for those “beds,” though, and their own high-paying residents got first dibs when an ALW space opened up. I’d put Mike on their waiting list months before he was kicked out of The Guiding Star and now, miracle of miracles, Mike was next in line for the bed that had just become available.
Mike had already been evaluated and approved by a nurse with the ALW program, but he also needed approval from Winding Creek’s RN. I was hopeful. We were all hopeful. The visit was scheduled for the next day.
Mike was not on his best behavior when the Winding Creek nurse showed up. It was lunchtime, and everyone but Mike was eating around the kitchen table. When Mike walked by on his loop, he slowed down long enough to reach for Ron’s plate. Ron held on. Mike jerked the plate away and yelled, “Fuck you!” He took a few bites of sandwich, set the plate on the bookshelf, and walked on.
When I talked with Anna later, she was apologetic. The nurse didn’t approve Mike’s application.
“Ours wouldn’t be a good placement for him.”
“But you manage with other FTD residents?”
“I know. But your Michael is extreme.”
The next morning I drove to Green Hill Care Home and gave Livia a check for $2,800 for Mike’s first month’s rent.
On the morning of October 3, I picked Mike up from Sister Sarah’s and took him for a long ride, during which time Dorin, Livia’s husband, with help from Dale and Daniel, loaded up his van with Mike’s belongings and delivered them to Mike’s new room. Dale took some of the overflow.
As I walked Mike to the car on his last day at Sister Sarah’s, Sang came close to me for a hug.
“You love me!” she said. “I know you love me!”
“Not exactly,” I told her, stepping back. “But I’ll always be grateful to you for all you’ve done for Mike and for the excellent care you’ve provided for him.”
I opened the passenger side door. Mike got in and buckled up. He still buckled up. I got in on my side, checked to be sure the child lock was engaged, and drove away.
2013
Dear Mike,
I wish you would stop walking your loop long enough to sit beside me on the couch at Sister Sarah’s. Sit and let me talk to you. I’d like to tell you that I’m sorry I was always a few steps behind in realizing the progression of your illness, expecting things from you that you could no longer give, being angered by your anger when you must have felt so lost and confused that anger was all you had left. I’m sorry I wasn’t more gentle with you when you refused to shower, or insisted on putting on your tuxedo for a nonexistent concert, or disappeared in the supermarket.
I’d like to tell you that I’m sorry I couldn’t take care of you 24/7. Sometimes I look at Sang and think, if she can do it, with six residents, why can’t I do it just with you? But I couldn’t physically keep track of you 24/7, and you were always angry, more angry with me than with anyone, I think, though you never smacked me the way you’ve smacked other caregivers. But here’s the other thing, too: I was becoming so worn down and depleted, it seemed that if there weren’t some relief, our kids would be losing not just one but both of their parents. No matter how hard I tried, I couldn’t make things better for you. There is a poem by Mary Oliver, “The Journey,” that tells of the narrator’s struggle to finally leave other demands behind, to move on, and to save the only life he/she had the power to save. I found wisdom and solace in “The Journey.”
But although I’m no longer with you 24/7, I’d like to tell you that I will always watch out for you. I will always make sure you’re getting good care. I will always visit you, and bring you cookies, and check to see that all is well—as well as it can be, given the circumstances.
I’m certain that even if you stopped looping long enough for me to say all of these things to you, the words wouldn’t reach you. But I’d like to say them to you anyway. I’d like the illusion of letting you know how I feel, how hard I’ve tried and am trying.
I don’t think you would understand a word of such talk, but I’d like to say it all to you, anyway. As it is, the letters, another illusion, will have to do.
Marilyn