Jan's Story (14 page)

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 they 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.

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.

I happily took care of Jan myself, and in time that didn't work. I got friends involved to make sure she was okay when I traveled, and in time that didn't work. I hired a live-in caregiver, flew her halfway around the world and even rented her an apartment for when we were in Beijing because the flat there is too small, and in time that didn't work.

If you need to be angry with me, I accept that. I have and will continue to make my decisions based solely on what I believe is best for Jan. And I also know that much of your anger with me is truly about what Jan is going through, about her confusion and anxiety, about how this seems so bloody unfair.

We are now at a moment when we can make Jan comfortable, content and mentally stimulated in her new home, and she gets to spend time with all of us. And these things could actually help her get better.

This is a very delicate time in the transition. We have a chance— and NO guarantees here despite our good intentions—to get this right. Jan is amazing. She is by nature upbeat, happy, vivacious. And we are a dream team, believe me. Think how, together, we span all the parts of her life. She is so blessed to have people like you, and she has you because of who she is and how wonderful and fun and adventurous she is.

We can still have that Jan but ONLY if we, together, make this delicate transition work in the weeks ahead. Or we can, singly or as a group, blow it for her. And the result of that is too sad to contemplate.

~Best … Barry

“Those who mind don't matter and those who matter don't mind.”
~Dr. Seuss

I was on the northern California coast, sipping morning coffee, looking across a field toward the ocean, when the cell phone rang.

“Why have you abandoned her?” It was one of Jan's oldest friends, her fury laced with venom. “You don't love her. If you really loved her, you would be there right now and taking care of her.”

I had just come from being with Jan at the assisted living facility and was taking a few days for myself to sit quietly and be alone in an empty house to listen to the sound of the waves. I needed a mental recess, an emotion-free period, before heading back to work in Asia. No such luck.

“You abandoned her.” For twenty minutes she told me how I did not, could not really love Jan. True love, she yelled, meant giving up everything, including my job, and moving to where Jan was and being with her every day that she had left and helping take care of her no matter Jan's condition. Or, by implication, no matter my condition.

And then, just as abruptly, she said she had an appointment and hung up. My entire contribution to the conversation had started and ended with “Hello.” Even if she had made time to listen or wanted to hear me, what would I say? I thought I had done it right. I had reached out to experts. I had found a wonderful place for Jan to live, and now I was being portrayed as a man who had betrayed the woman whose only fault was that she loved me.

As a caregiver, I appreciated sympathy. It helped. But when the days were hardest, what I really needed was understanding. Understanding meant people accepted and supported what I was doing. They got it. When you are grasping and, in my case, too often stumbling uncertainly for a way forward, acceptance and support help beat back the doubts and the confusion.

To understand, people need to see what you see. And this is where my inexperience led to a terrible miscalculation. Jan's friends and family could not see what I had been seeing day-today because Jan and I were five thousand miles away. Unlike Diane and me, they had not been through the ever-tougher daily battles and the anger or the withdrawal, or watched her struggle with a horrible confusion just trying to find the words for a sentence. I thought I was making it clear in the updates to family and friends how fast Jan was changing.

I plotted the move into assisted living as carefully as I could, assuming everyone would understand why this was a crucial way of helping Jan. And just as I was patting myself on the back thinking the transition was working, I slammed head-on into that wall of anger and disapproval. I didn't factor in the brightness of Jan shining through. How funny that one of the things that made me first love her, and something she still mercifully had, now made others basically distrust and detest me.

They saw a Jan who was still cheerful and beautiful. That is how The Disease works. It doesn't distort the body, and it can leave some traits alive, like Jan's smile and laughter. If you aren't there at the bad moments, if you aren't there to agonize over another sign of deterioration, you couldn't see how much she had changed. Instead, you only see the person you remembered, as if all of her were still there.

And, in that kind of denial, all you'd see is this lovely person who did not deserve being “placed” in a “facility.” And you could detest the man who did it. These friends didn't want to see the Jan who had a terminal disease or see that we would lose more of her each day. Instead, they focused on a husband who (in their eyes, and maybe they were right?) had bungled watching over her these last few years, and then had hired a live-in caregiver who irritated Jan, and finally had moved with too much haste to “dump” her into a “warehouse” where she was being sentenced to a form of life imprisonment.

I didn't blame them. I had the same doubts and a sense of guilt about leaving her where I could not watch over her, could not help her in the days and nights. But someone had to make this call because it was coming sooner or later, and I was it.

Now I was at a critical moment, the moment of making this transition work. Jan needed the routine of the facility to help her through the day. She needed nurses and staff watching over her, people cooking for her, and friends who visited in what I hoped would become an always-familiar and, for her, safe place that would ease her confusion.

If she could have these things, then she could have a form of peace that I was unable to give her by shuttling us between Tokyo and Beijing, or even by having a live-in caregiver. With this constant traveling, she was increasingly lost in confusion. And that confusion fed her anger, and seeing her angry and unhappy made me feel like a dismal failure of a husband and a caregiver.

As Alzheimer's progresses, it is harder for the person to add new information. That is why routine is so critical. Jan needed to wake up in the same bedroom at the same time and have the same chair at the same table at mealtimes with the same people. Change means readjusting and that is one thing we needed to avoid.

I imagined her Alzheimer's at this point as like a person watching a movie and, as it goes along and new information keeps being added, it speeds up the movie. It's like someone is pushing the fast-forward button, making it faster and faster and, in time, it is incomprehensible because the images are flashing by so quickly you can't even make them outandthewordsaregibberishthatcantbeunderstood.

Finally, the person simply shuts down, closing their eyes and mind to the too-fast movie and withdraws. And this is repeated every day. The movie starts and then speeds up as the day unfolds and finally the mental chaos is overwhelming and then … shut down.

The point of making her surroundings familiar and routine was to make it less challenging for her mind. I wanted to keep the movie running at normal speed. This was what Jan badly needed now, and I thought everyone would see it as I did. I was wrong.

It was hard for her mom. Caron had spent several years caregiving for her wonderful husband, and he had just died. I expected that she, above all others, would understand the need for Jan to be someplace safe and normal and routine. She didn't at first. She was among the doubters who grew into being what I called “The Angry.”

They had to see, and they could not see it from me. At least I got that part right. I organized what I called “The Intervention,” a family gathering in Caron's living room where The Angry could face the experts. I would not be there because I was on the way back to Asia. The transition to assisted living was only a few days old, and it was already in disrepair. And worse, it was in danger of collapse. There were mutterings about moving Jan out of the facility. I was alarmed. How had I done such a bad job explaining Jan's condition and failed in getting people to understand my decision?

There was a threesome batting for my side; Dick, my Alzheimer's Buddy, Diane, and Jullie Gray, a social worker who helped in founding the medical ethics committee at a local hospital. I had just hired Jullie as a care manager and kind of ombudsman for Jan. She would watch over both Jan and the facility for me while I was in Asia, and help resolve any medical problems beyond what the facility staff could routinely handle.

“Diane and I had visited Jan at the assisted living facility before our meeting,” Jullie told me later. “Jan was socially engaging but had significant language difficulties when I spoke to her. I quickly realized that if someone met her for the first time and wasn't knowledgeable about Alzheimer's disease, and if Jan was having a good day, she could appear very ‘normal.'”

Jullie came to the intervention with charts and pictures and explained in graphic and uncompromising detail how Alzheimer's attacks, physically alters and destroys the brain. Jullie is a charming woman, bubbly and upbeat. But her tough, experienced, no-nonsense side made what she said all the more believable. She was teaching her version of Alzheimer's 101, because if you do not know The Disease and have not lived with it for years or decades, it can fool with ease. The first-timer rarely gets it right.

Gently and firmly Jullie explained The Disease and its tricks. “It's not unusual for people to initially believe that a person with Alzheimer's is more capable than he/she really is. Many times, family members will incorrectly attribute challenging behaviors to ‘acting out' as if they were doing it on purpose, rather than as a result of the disease.”

Jullie offered this from her own experience. “I've seen family members say, ‘She knows what she's doing, and she's just trying to make me angry.' When a family member believes a person is more capable than he or she really is, the family member expects too much of the person with Alzheimer's and gets incredibly frustrated.”

Jullie came with pictures, showing how the brain changes as the cells slowly die. She hoped that by showing Jan's family images of the physical alterations, they would understand that The Disease is real.

Diane, wisely, mostly stayed quiet because she sensed that the room was against her, especially since there was blunt talk of moving Jan out of the facility and into a regular apartment with a “good” caregiver. The implication was clear; Diane was the “bad” caregiver who had been difficult for Jan to be around and had prematurely encouraged my placing Jan. “From the get-go when walking in,” Diane told me later, “my guard was up, as the hostility toward me was very apparent. Each time I spoke or attempted to explain why we made the decisions we did, I was cut off.” Some of those in the room thought Diane had, in some way, brainwashed me into moving Jan, and in their eyes that was not the best thing for Jan.

And Dick, calm and solid, told how he had retired from his job to be the full-time caregiver for Dorothee after her diagnosis. His was the personal part of the story—the years caring for Dorothee and how he finally decided it was time for her to go into a facility. The timing, he told them, had as much to do with concerns about his health as much as hers.

Dick told them they should not judge me since they have not, and cannot, walk in my shoes. “Barry, you made the correct decision, and they needed to respect you for it.”

He was the logical one to handle the question of “why didn't Barry just quit CBS News and move to Seattle and care for Jan?” I am not sure I appreciated his answer, as he told me later, “Look at the reporters on local TV,” he said. “There aren't very many old ones. It's mostly young ones, starting out in their careers. Or they had been in Seattle for years, long enough to have a firm hold on their positions. Do you think Barry could really get a TV job in Seattle these days?”

Not flattering, but true. I had a job which supported caring for Jan and if I gave it up, there might not be work for me in the immediate area, and CBS News had no office in Seattle.

Diane reinforced the point, and got a verbal boost from Jan's mom, Caron. “She came to my rescue, and suggested we take notice that the majority of new anchors were young, blond attractive women.”

And Dick shared one more thing; how Dorothee's friends had dropped away as Alzheimer's took away more of her brain. “I still feel my sorrow that Dorothee's friends have abandoned her, and I told them about the hurt that I still feel over that.”

The key focus of the intervention was explaining how The Disease tricks and steals, how it was possible for Jan to be bright and cheerful and stay that way for a while longer even as memories and competence slip away. The point was to drive home how critical routine was to Jan's well being. Routine could bring comfort, and the facility could provide that routine.

In the end, the intervention initiated the changing of minds … but only the beginning. Jan's old friend, who was angriest with me, stopped and talked with Jullie as the evening was winding down.

Jullie remembers it this way: “After the meeting, she (Jan's friend) sought me out in the kitchen for a private talk. She talked and I listened as empathetically as I could. She needed me to know and validate her relationship with Jan, and wanted to go over again how angry she was with you, Barry. I sensed that she needed to be able to express her anger before she could move anywhere else emotionally. She asked if she could call me for a private discussion, and I encouraged her to do so. I knew she wanted to ‘get me on her side,' to see things the way she saw things. I tried to be neutral, to listen, really listen, and hear her concern.

“I felt that she was going through the normal grieving process and she was stuck in ‘anger' for the moment. She hadn't had as much time to get to the place of accepting Jan's disease, and I hoped with time, she would be able to get there.”

That was the key … the grieving. The Disease makes no space for closure, no moment of knowing that a life is over. Instead, it robs slowly and softly. And that meant the people around Jan, seeing her as she settled in, had a terrible choice that I already knew all too well; accept or reject that Jan was terminally ill.

Rejecting comes more naturally. I understood this. I spent years doing just that. How foolish of me to think that others would skip this phase. They, too, needed time to find their grief and then acceptance, even as Jan still stood alive and lovely and lively in front of them.

Their suspicion of my motives remained, along with the anger. It took time—months, in fact—for attitudes to soften and for insight to replace accusation. And for some, there was no softening, and may never be.

In those first weeks of transition for Jan there was so much emotion because they didn't want to see Jan leaving us; or if they did see it, then they needed to blame something or someone for the changes in this lovely woman we all cherished. That someone was me. I can talk about it now with detachment, but I couldn't at the time. I was crushed.

It was bad enough for me that the decision was driven in part because my exhaustion as a caregiver was rapidly getting worse and endangering my health, leaving me feeling that I had somehow failed Jan. That exhaustion also meant I plowed into this transition with no reserve of emotional strength.