Second, we think this is a good time for the transition because she is still aware enough to help out and be part of the process, if she so chooses and we make it work.
Third, and this is the reason I hate most of all, Diane and others around me are warning that I am now being dragged down in ways which will start affecting my health and well being, if it hasn't already. This is not unusual for caregivers, and studies show that being an Alzheimer's caregiver to a loved one can shorten your life rather dramatically.
I am not a hero and I do not think this situation is about me, because the focus is and must remain Jan. But I am also just barely smart enough that when it is pointed out, I can and do see what is happening to me, such as my deepening level of exhaustion or the effects of living on a never-ending emotional roller coaster. I am reliably informed that if I do not make this change, and soon, this will not end well for me. And while that is secondary to me because in this battle we must all put Jan first, there is logic to knowing that if I falter and fail she will suffer for it.
PLEASE DO NOT TALK TO JAN ABOUT ANY OF THIS if you call. We are crafting the ways to make the transition work and the critical issue is how and when we present this to Jan. She needs to hear this from me and I need to tell it in the right way. Even that is no guarantee she will accept it.
~Until then … Barry
14
“When you come to the end of your rope, tie a knot and hang on.”
~Franklin D. Roosevelt
Into Assisted Living
It was spring in Tokyo, feeling warmer and better each day. Spring also brings the pleasure of cherry blossoms. The Japanese use the few weeks that the blossoms are in bloom as an excuse for late night parties beneath the pink flowering trees. Sometimes it is large groups, usually from the same company, having an evening picnic with beer and laughter and music. The best cherry blossom trees in Tokyo decorate the calm of cemeteries.
Planting the fragile cherry blossoms in a place devoted to death is a perfect place for the Japanese. To them, the cherry blossom season is about remembering the hardest lesson of human life—almost no one knows when life ends.
Life and cherry blossoms are incredibly fragile. The blossoms last a few weeks at best and some years harsh rainstorms and high winds will strip the trees bare while the blossoms are still in their prime. Even in good years, the blossoms are here briefly and gone. They are, the Japanese will tell you, a metaphor for life—enjoy them in the moment.
Japan cheers up during cherry blossom season. On the evening news, there are regular reports including maps showing the progression of the trees blooming starting in the south where it warms up first. If you live in Tokyo, you can watch and anticipate when the trees will flower in the metropolis.
The cherry blossom season of 2008 was a calm and enjoyable time. Jan was resting in the bedroom when Diane and I sat down to talk. Diane's try at a smile contrasted sharply against the late afternoon sun as it poured soft amber light into our Tokyo apartment. Maybe, she said gently, it was time to think about what we might need to do next. It was somewhere in her conversation that I first heard the words “Assisted Living.”
In truth, I didn't recoil. Perhaps my reaction was worse - a sense of relief. Was there a way out of the endless day into night into day of my life? Diane had been with us only seven months, and in that time she could see the changes unfolding that I was missing. I had questions, and the most important was the hardest to answer. “How do we know that now is the right time?”
“It could be too soon,” Diane admitted. “But if so, it's better if we do this when Jan is still able to adjust to a new place, and it will also help the staff get to know and bond with her if her personality is intact.”
Jan, up from her nap, wandered into the living room and asked what we were talking about. I couldn't tell her. Instead, I smiled. “We were just talking about what to have for dinner.” The next day, I booked a flight to Seattle to begin what I knew was the beginning of the end, the chapter where I would lose not only the woman I loved, but her presence in my daily life, and mine in hers. No need to come home cheerful because soon there would be no one there when I came home. And behind that thought was the unanswerable question out there … why come home at all?
Diane had a friend in Tacoma, WA who specialized in helping people like me find a place for people like Jan. Pat Ness was also a nurse, and her consulting firm, Elder Pathways, Ltd., proved to be perfect because of her focus on assisting elders and their families with their caregiving needs. Even though she smiled a lot, there was hard, sad experience beneath the surface, and a strength I opted never to challenge. I was glad she was on my side. She became my guide in the hunt for Jan's new home, helping me find the right assisted living facility and preparing me for this new phase of Jan's life and what I considered all but the end of mine.
I pushed that last part aside, thinking I would deal with it later, and later it came back to almost destroy me. But that was later. We tromped into and out of several places from Seattle to Tacoma. Every place we visited left me in shock with what was yet another lesson unique to Early Onset Alzheimer's. These were places for very old people in their seventies or eighties or 90s. None was geared for a bright, active woman in her late fifties.
And they knew it. Over and over again, I asked the director of this place or marketing manager of that one, how Jan would fit in with people so much older, and there was no real answer. They had little or no experience with having someone this young in their facility. I worried that Jan would see through the bright colors and lovely dining rooms and cozy small apartments and realize that she was living in a different world … the world of the aged and infirm.
There was no real choice. This is where people who need help with Alzheimer's often go while they are still functional. And most did not get The Disease until they were significantly older. We had odd moments along the way, like the food pitch. It seemed that each facility, according to whoever was selling us on the place, had its own dining room and tried giving the impression that French chefs would be envious of the amazing lunch and dinner dishes served on a daily basis.
I finally asked Pat what was up with all the emphasis on food? She explained how in times past there had been scandals about the poor or even disgusting quality of food given to residents in these old-age facilities. Now the good ones touted tasty food and attractive dining rooms. One had a dining room that felt like you were on a cruise ship. And with Alzheimer's, food is even more important because meal times are a critical part of setting routine. Most places did, indeed, have different selections for meals but each also had regular, constant choices like a turkey sandwich or hamburger.
The reason for that was people who have difficulty making choices can settle on one thing and order it at each and every meal if need be. I didn't get it then, but I did when Jan started doing just that. Unable to cope with a choice between two lunch selections, she would go for the hamburger almost every time with a sense of relief.
When we finally visited a facility in Bellevue, Jan's home town, it clicked. The one-bedroom apartment was perfect. It was on the first floor with big windows in the living room overlooking the roofed porch with outdoor easy chairs. It felt like looking across the veranda of a Southern plantation house. There was a lot of light, and Jan always responded well to the light.
It had a separate bedroom where most units were one room studios. In truth, Jan may not have cared about the difference between living in a single room and having the extra space of a small apartment, but I cared. I wanted something nice.
I created a small e-mail group called “Jan's Team” of close friends and family who lived in the immediate area. The idea was sharing among ourselves any day-to-day problems that we could work on together. This is from one of my first notes to “Jan's Team” just before we made the transition from Tokyo to Bellevue.
I started talking with Jan this weekend about “our” moving to Bellevue. It was framed, as several of you had su
ggested, as the beginning of us moving home for good. I also said the idea of Bellevue was good at the moment because she has her mom, brothers and friends. She is actually getting enthusiastic about this. I think she is ready to go home, ready to be someplace with good and familiar friends, and surrounded by people who speak English.
I have decided, as much as one can decide these things, to view this in a truly positive and, frankly, upbeat way. None of us can change the course of what is happening to her. But all of us working together can make her happy, and being in one place, having some stability, surrounded by normalcy and friends, is now the way to make that happen. So let us be glad that there is a good place for her and let's focus on making it a wonderful place.
This is a journey I have never made. I am now less scared and more confident about the good we can do for Jan because of all of you.
I wanted to be comfortable that she was in a good facility. I wanted to look back whenever I left after a visit, knowing she was in a lovely space. And to prepare her lovely space, I enlisted help. One of her close friends from her local TV days, a fellow reporter with Jan, walked me through furniture stores and helped me pick out chairs and end tables and a bed. Then we went to the local paint store for samples of pink—”Jan Pink”— that we took to the apartment and decided which one worked, and then had the assisted living facility paint her apartment in that color.
I printed a dozen different photos of Jan with her parents, her brothers and sisters and her favorite aunt, of our wedding, of vacations we took with the girls. Another friend got them framed in different sizes and then went in ahead of us and spread them around the apartment as memory cues. To hang on the walls or decorate the tables, I brought an Asian-themed Buddhist wall hanging, pictures of Paris and London, a large antique Russian samovar (for boiling water to make tea) that we had smuggled out of the old Soviet Union. More memory cues. We did this before Jan set foot in the place because Pat and Diane warned me it could be a struggle getting Jan settled. I wanted to prepare by having as much around her as I could that was familiar.
She loved the apartment, but quickly and thoroughly hated the rest of the place. It started the moment she first walked in. “It's full of old people,” she said.
I tried shrugging it off. “I'm sure they're nice and have amazing stories to tell.” Fat chance.
“They're old. Old! I am not old. What are we doing here?”
I stayed with her the first few days and it tore at me because I felt the same way. I would walk with her into the dining room for meals and we would be the kids of the place, surrounded by many in wheelchairs or walkers or just struggling to get to a table. They were gray haired, Jan was blonde. They moved slowly, Jan was a ball of energy. It wasn't good, and it would never get better.
It would have been so much easier for her if there had been a place full of people her age, but there wasn't. Alzheimer's may be the coming fate of aging boomers and that means growth in the number of assisted living facilities, but not yet. And especially missing are places geared to those with Early Onset.
As for timing of the move, Diane was right … and wrong. It helped that Jan was more aware because she could adapt and could understand that this was “temporary” as part of “us” moving back to America. Yet, it also meant Jan sensed that something was fundamentally untrue about the story of moving back, that she was being forced into “living with the oldies.” Like having a caregiver with us in Asia, this was another sign that she was ill.
More and more, as she faded, she insisted more firmly that she was fine. No Alzheimer's for her, and even getting her to take the medications was becoming a struggle. “I'm healthy as a horse,” was her mantra. And her rock-solid insistence from the early days on taking her pills to fight The Disease turned into an attitude of angry resistance. Someone as healthy as a horse doesn't need pills!
By now, she was very adept at compensating, pretending she knew what was going on around her, when she clearly did not. Our friend, Kit Yarrow, got a taste of this.
She visited Jan in the summer of 2008, during Jan's first year in the facility. “Jan's gushy, girly love was the same,” Kit said, “but she wasn't.”
Jan didn't remember Kit, something hard for everyone when they visited and Jan clearly did not know who they were. But Jan's personality still came through.
“She greeted me,” Kit told me, “with that huge red-lipped smile and pretended that she knew who I was, so she wouldn't offend me. In no time, we were sitting on a bench having a giggly, exuberant girl talk.”
My focus was on her comfort, but there was also the reality of paying for these people to take care of her. In this, I had a touch of luck, and at this point I needed it badly. A decade earlier, we got a solicitation from AARP, the American Association of Retired Persons, offering an insurance company's long term disability policy that AARP recommended. I decided to buy it, thinking that I was someone fairly likely to take a bullet while on assignment and not wanting to become a burden to anyone. And because Jan and I did everything together, I bought a policy for her.
But having a paid-up policy did not guarantee payment. The insurance company assigned a case manager who began the process. She was initially dubious about Jan's needing this level of care at her age, for which they would have to pay.
Her care was going to cost about $6,000 a month. I hadn't figured out how to pay for this if the insurance company balked, except to begin selling things as fast as possible. I had this vision of the 1800s sternwheeler riverboat racing down the Mississippi River and running low on fuel, so the crew starts taking the boat apart plank by plank, feeding the wood into the boiler to keep going. That was the extent of my plan. Sell and scrimp.
The case manager was a nurse who talked with Diane as part of her assessment. Diane, out of professional habit, had kept notes on Jan's deterioration during her months in Asia. I remember the call from the insurance case manager; I had just pulled out of the parking lot of the facility onto a side street when the cell phone rang. When I answered and heard the voice of the case manager, I pulled over and parked assuming she needed more information and I would need to take notes. “Okay,” I said, “go ahead.”
“Mr. Petersen, I am calling to tell you that we have approved your claim.”
There was more, about when the payments would start and needing to certify the facility and other details. I thanked her, hung up, stepped out of the rental car, walked around to the passenger side, leaned over with my hands on the roof, and began sobbing. It was equal parts relief and joy, that something—anything—about this part of Jan's care was finally working out.
The insurance covered up to about $5,000 of the monthly expenses. But with the extras that Jan needed, the bill was closer to $6,000 so I paid about $1,000 a month out of my pocket. But this wasn't the end of it. I was warned that as Jan's condition worsened and she needed a higher level of care, my out of pocket costs would increase because the insurance reimbursement was at its maximum. So while the basics were covered, the extras, which meant her extra care, would only go higher.
I shuddered to think about what if the insurance company had said no, or I had no insurance. How would I have paid the roughly $72,000 a year? I still don't know. It's yet another cost of The Disease when it strikes early. Jan was too young for Medicare, which in most cases doesn't cover assisted living anyway. She was fifty eight when I placed her into the facility. And because of The Disease, she was unable to work much in those last years, so she didn't pay enough into Social Security to qualify for disability. No help there.
I felt lucky, because for some without insurance, there is a terrible other option—divorce. Without assets, the patient qualifies for Medicaid. Some people who have been married for decades have to go through this. The reason is that if they stay married and the government pays the bills, it will go after the surviving spouse for repayment. That means a surviving spouse can face tens of thousands of dollars in bills and must, by law, sell off virtually everything th
ey own to pay off the “debt.” It leaves people destitute.
Do they spend all the savings once earmarked for a child's college education, or money that was put aside for just plain living? This is not that rainy day covered by that nest egg. This is the Biblical flood that can wipe out everything.
Once she moved in, there were other problems and one of the first was about her clothes. I packed suitcases of clothes for her when we came from Tokyo in my desire to give her a variety of outfits. Instead, she would open her closet and stand, unable to decide among so many clothes. So one day, when Jan went to lunch, I had someone go into her apartment and take away almost all of her beautiful clothes. Left behind were the black jeans she always wore, the black cashmere sweaters and her pajamas. It ended her confusion about the simple but difficult act of deciding what to wear. All part of the ongoing fine tuning.
Listening to those with experience and following their advice made me confident that I had done it right. I didn't. I misjudged one fundamental truth of Alzheimer's and its neverending way of playing tricks with Jan's brain. The Disease would sometimes let her vibrant personality burst through, and that convinced some of her friends that I was anything but a loving husband and caregiver. Some were convinced I had let Jan down, that I had acted in all the wrong ways. And the hardest accusation of all was that I didn't love Jan. And worse; that I was purposely hurting her by moving—some said dumping her—into this facility. In their eyes, I was a man whose actions bore the mark of betrayal.
TIMELINE
June, 2008
Barry's update to family and friends
I am sorry that some of you are angry with me for putting Jan into assisted living. I should have anticipated that, and I didn't. I forgot that I have lived with this for years, and you are just now coming face to face with this baffling, unpredictable illness. This is a deceptive, wily disease that is attacking someone articulate and charming and beautiful.
Jan's Story Page 14
