Yes, darling, I would answer, using my matter-of-fact voice, hoping my calm tone would reassure her.
“I don't want to be a burden,” she would repeat over and over. “I can just go away. Why don't I just go away?”
No, darling, I would say. I will take care of you. Wouldn't you take care of me?
“Yes!” And the idea of being a burden would fade … for a while.
9
“Walking with a friend in the dark is better than walking alone in the light.”
~Helen Keller
How Did They Know, and Thank God
If there is something good here, it came not from within me but from how others helped me. Some were friends already, others were strangers who became friends by reaching out. I didn't realize how solitary caregiving would be, and I underestimated how much I needed help. My excuse was that I was the amateur trying to force aside a field of dense fog by waving my bare hands.
Being overseas had made us exotic and interesting, the well-traveled couple worthy of a dinner invitation. Now what was good about that life played against us. In Asia I was isolated from the most normal kind of help, which was about getting insight from others fighting the same disease. I tried finding a support group in Tokyo, but what groups they had were all in Japanese and only for those with elderly parents or aged spouses suffering from Alzheimer's. Japan's culture discouraged people from talking or sharing much about their personal lives, so there was little help for me there. And Japanese doctors didn't have the kinds of medications available that I could get in the United States.
But a group formed around me from different parts of the world, small but effective. Harry Dank first met Jan in 1986. He's one of those rare people who likes to work overnight, and this has served him well at his job at CBS Radio News. That meant he was on duty at night in New York during our daytime in Asia. He was often the one who called Jan to get a story done when she was the radio stringer on our first posting in Tokyo.
When Jan was diagnosed, Harry became a human search engine, keeping me up to date on stories about new research, drug trials, and the occasional hope from potential breakthroughs. It helped that he spent five days a week, eight hours a night, reading the news wires. He would forward stories on Alzheimer's as they appeared.
But mostly he called with two questions: How's Jan? And equally important: How are you? Being a fellow journalist he expected the truth, and that meant I had to tell him the truth, which meant I had to put those things into words. That question always made me pause and consider where I was in the journey, and explain to him how I was doing at this point or that. It was a kind of talk-about-it therapy, don't hide from those feelings, and that worked.
While I will always be eternally grateful to Harry and how he helped me, I stood in awe of the instinctive abilities of others to understand what Jan needed because there were so many times when I felt both lost and unsure how to respond to her changes. I was forever reading books or checking the latest website on Alzheimer's, but some people were just born to have that insight. One such person was Billie Tisch. Her late husband, Laurence Tisch, was the CEO of the CBS Television Network from 1986 to 1995, and I was lucky and grateful to know them well.
Early on during his ownership, he and Billie visited Tokyo to see the CBS News Bureau and there was a small dinner where Billie met Jan. Billie sent a thank you note and said what a lovely time she had; how much she liked Jan, and that we should keep in touch. And we did. If Billie and Larry were somewhere traveling where we were, like London, we would meet for dinner. If we were in New York, we would try to match schedules for the same.
Petite and incredibly gracious, Billie was also always wise beyond my comprehension. There are rare and good people like that. She sent me a note once. I have it still:
“I hope that as Jan's memories fade, you can dig down for thoughts of easier earlier times together and that your treasured recollections bring smiles of what was, rather than sadness for what is lost.”
We visited New York once after Larry died and shortly before I had to move Jan into an assisted living facility. We had dinner with Billie at the home of her son and his wife, Andrew and Ann Tisch. For no special reason, she gave Jan a gift of a small scarf. I believe it was red, one of Jan's favorite colors. I asked her later if she had read up on Alzheimer's and wanted to give Jan a memory cue, and she said no. The idea of giving Jan a present was something she did from instinct. I remember it being a hard night for Jan. There were seven people chatting with each other around the table, something she would have once loved. No more. She went quiet. Through the evening, she uttered two sentences and that was it. But the scarf … she remembered that for weeks afterward. Whenever she wore it, she'd say, “Oh, that was from Billie, where we had that lovely dinner.”
Did she remember the dinner conversation? Not at all. But she remembered the scarf, and it reminded her of Billie, and that somehow connected to “a” dinner. And that pleased her. And thrilled me.
There was also help from another long-time friend that Jan liked and admired. Amy Bickers had worked in London, Hong Kong, and Tokyo, where she was the Bureau Chief for Voice of America. She and her husband, Chaz, moved to Seattle when they decided it was time to raise their two rambunctious American boys in America with a backyard that could absorb some of their endless energy. Amy has the same upbeat, just-get-it-done personality that Jan once embodied. Amy has a lot of the same restless energy that Jan had, and it was now spent raising two boys, jogging every morning, and still finding time to work a full-time job.
She has always radiated a spirit of caring for those important to her, and with Jan's diagnosis, Amy was almost immediately at hand and ready to help. She and Jan started as colleagues who became friends after they first met in London and worked for CNN. They seemed fated to work together. When we moved back to Tokyo and Jan began free-lancing for VOA, Amy was, by then, living and working in Hong Kong and was one of the VOA editors who took in Jan's stories. VOA moved her to Tokyo where, until they left for America, she and Chaz lived in our apartment building a few floors below us. Being Amy, she was not convinced when, during a phone call from Seattle, I told her I was “all right” after Jan's diagnosis in 2005. Typical of Amy, she went to work finding ways of helping Jan and me.
“You need support,” she said. Being a reporter, she reached for the tool she knew best … the telephone. Phone call after phone call, one conversation led her to another source or idea. Those collections of information led to an e-mail that left me humbled for the thorough work she had done, and the care she was bringing to Jan's plight and my confusion:
Dear Barry, Here are some resources to get you started.
Some? Amy sent me a detailed list of help lines in the US, complete with phone numbers and contact names, people to whom she had personally spoken. She sent suggestions for books, and even had a line on someone she knew in Tokyo who could spend time with Jan. And the e-mail included this:
A man named Dick has a spouse whose wife also has Early Onset. Lives in the Seattle area.
I called Dick Lundgren immediately. Dick's wife, Dorothee, was much further down the road than Jan with Early Onset Alzheimer's Disease. Her descent was so similar to Jan's that I felt Dick could warn me of the pitfalls ahead. And he was honest enough that I sensed he would share the mistakes he made along his way, so I could avoid making the same ones. In time, I came to describe him as my Alzheimer's Buddy. He was the lighthouse in my fumbling darkness because Dorothee was more advanced. It was as if Jan and Dorothee were in a parallel universe, and Jan's changes mirrored what Dorothee had already passed through. Dick and I as caregivers watched and coped, for better or worse, from the outside.
Dorothee's symptoms first showed in 1995, and she was finally diagnosed in 2001. Dick retired in 2003 to become her fulltime caregiver. In January, 2008, she was functioning so poorly that Dick felt he could no longer help and realized he could no longer cope, and he finally placed her in an Adult Family Home. Dic
k would look back and use his own experiences to ease my confusion. Since he was also active in Alzheimer's support groups, he could also draw on shared conversations with those others going through this with us. He was better than a book or website because he was a friend.
The first question we discussed was whether I should tell people about the diagnosis. There are pretty much only two answers—you share or you hide. Dick said people in his Early Onset support groups did both, and those who were most successful were the ones who were open with friends and family from the beginning. This made sense. People already noticed changes in Jan, and it would only get worse. They needed to know what was going on so they could adjust both their thinking about Jan and how they dealt with her when we got together. That also meant reducing the number of awkward moments for Jan when we were with other people. This, I desperately wanted.
Dick helped me shape guidelines I could share with friends on how to prepare for being around Jan: be patient with the constant repetition of sentences, understand why she will tell you the same story three times in ten minutes or, conversely, why she will sit without talking for an hour or more.
And he helped me with an early crisis that was a warning of how Alzheimer's was playing cruel tricks on Jan's brain by altering what she could remember. As I explained to Dick, it unfolded this way:
I am feeling a bit overwhelmed. I've seen some things in Jan that alarm me, and I'm wondering how they match your experiences.
Example: The Sunday of our Seattle visit, Jan's dad had a conversation with her about his will (I wasn't there). Jan came downstairs in tears, saying her dad was throwing her out of the will because we had enough money. Jan took this as rejection, and that she was being separated from her two brothers and two sisters.
BUT - when I talked with Jan's father, he was dumbfounded. He said he didn't tell her he “cut” anyone out of the will, only told her that he would probably give most of what money he has to the grandchildren for college. To him, it was a casual conversation, not a planned confrontation. This was just Jan and Dad talking about his priorities for his estate.
It was a first look into what would be more and more common; that what I, or others, told Jan was not getting through as we said or meant it. More importantly, she could not give me an accurate sense of what others were saying to her. Her memories were being filtered and distorted in unpredictable ways.
Dick had already been there, as he wrote:
I understand exactly what you are talking about. I went through this with Dorothee, and still do from time to time. She was telling me things that I knew were not so. She would get things in her head and, no matter what I said, I could not change her mind. I learned that the only way to get around this was to first appear to agree with her. Then if it was due to something she told me someone had told her, I'd contact that person directly to get the correct information. I could then decide to address it to Dorothee or just let it go. I no longer give anyone my home phone number, just my cell.
He warned me that I would see The Disease making its changes in sometimes small and subtle ways. He called them “Little Windows” into Alzheimer's. As I watched our lives change and felt us withdrawing from the world, Dick sent me this:
Dorothee went through this for a while where she didn't really want to go anywhere. In hindsight I think she was concerned that she would do something that would be embarrassing for her and that people would notice and figure out that she had Alzheimer's. The other thing that could be happening is that there are a number of different steps that Jan has to do to get to the market. For instance, leave the apartment, get on the elevator, remember which button to push and floor to get off on, leave the building, etc. I think you get where I'm going.
You and I do this without thinking about it, but a person with Alzheimer's has to work at thinking and remembering everything to do. This is where all of the confusion starts and grows from. Also, by the time she gets to the market she is exhausted from all of the work she had to do to get there. Then she has to go through all the steps to get the items she went there for. At some point Jan will get to where she will not go anywhere without you or someone else. She also will walk at some distance behind you unless you hold her hand and keep her with you. If I don't hold Dorothee's hand she will stop and stay in place until I get her.
One day, there was an incident with Jan. She got up in the middle of the night headed for the bathroom. She was confused, unable to communicate what she wanted. Moreover, she was stooped and shuffling, more of an unsteady stumble. It was scary, as if this was some desperately old person who could no longer walk. I led her to the bathroom and back and let her sleep late that morning. When she woke up, she had no memory of what had happened, not even of getting out of bed.
I needed more than information … I needed advice, so I turned to Dick.
Question: I told Jan about the event—which she didn't remember—and it scared her half to death. So now I am wondering if honesty really is the best policy here. Do you have any advice? I am inclined to NOT talk about these events with her, should or when it happens again. I don't see that it helps, and I can see how frightening it is for her to hear about things that she doesn't remember.
To which Dick replied:
I have found that it is best not to tell Dorothee about most things like this. It only causes her to cry, and it just isn't worth it. I also decided long ago that this is the only case where a “little white lie” doesn't hurt. We have discussed both of these in my support groups and all have come to the same conclusion.
Then there were the little changes that altered little routines, and yet became a constant reminder of The Disease. One was a penchant she developed for collecting and rearranging things for no reason. I first noticed this one morning when I went to take a pill and the bottle wasn't on the bathroom shelf where I usually left it.
At first, it was no big deal. I figured I must have moved it and went about opening drawers and looking on other shelves. Something prompted me to check the top of the bedroom chest where we kept Jan's medications and, sure enough, mine was there as well. At some point in the day she had gone through the house collecting all the bottles that looked like medications and then carefully arranged them on the chest.
There was no use asking her why, because she wouldn't remember the doing or the reason. But I wondered if this was a new pattern, and one to be often repeated.
To Dick, it was a reminder of little things that add stress on the caregiver, layer by layer, and a sign that I was moving quickly down the same road where every aspect of day to day life is increasingly unpredictable and exhausting because it needs particular thought, preparation, and more patience. His note about Dorothee:
Oh yes … the hiding or rearranging of things is very familiar. Dorothee took everything out of her dresser about four years ago and then put it all back but in different drawers. Then she accused me of giving her things away because she couldn't find them. She would also take her doll collection and hide them in different places and forget where they were. She would tell me that someone had stolen them. I finally put them on top of her dresser, which she can't reach.
This all took place when I was still trying to reason with her and that made it more frustrating for me. I learned quickly not to try to reason with her. It doesn't work.
I don't know how you get your personal mail but I would suggest a P.O. Box or some way that she can't access. They have the tendency of hiding incoming and outgoing mail. I know of some people that had real nightmares with this issue. Water, power shut off. Collection agencies, etc.
I am sure you heard me talk about my spending “months” looking for Dorothee's glasses. I found them in the strangest places … the pantry, the hutch with all of her collectables from Germany, even on the hanger I have attached to our patio door so she doesn't walk into the door. I finally gave up and she doesn't wear them anymore. Too frustrating and time consuming.
Old friends who have known Jan for many years also
helped me see where we were. One was Bob Hartstock, a wonderfully creative architect/designer who helped us on several renovation projects at our house in northern California. He worked side by side with Jan on some of the bigger tearing-down-walls remodeling.
After our visit in the summer of 2007, he sent me a note, a snapshot. It wasn't that I didn't see some of these things, but it was that I wasn't registering them, or didn't want to. Bob's note was both analytical and clear:
It appears that with simple tasks she was confident to proceed, such as rinsing the dishes and loading the dishwasher. This seemed intuitive and she did not question herself. I also observed that she seemed to zone out when completing this task. She would sing and appear to be in a very happy place, in her mind. But with the task of cooking or multi-tasking, she was lost, confused how to proceed, forgetful with the task in hand, and unable to complete the task.
I think she recognized the problem, but was unable to solve it. Almost like something that had to be done, but she forgot the skills how to complete the task. Cooking dinner: she knew you must cook the steaks, but was unsure how to cook them. And sometimes she was unable to locate the steaks. Travel: she knows she will be traveling, but not sure where or when. Social functions: as long as you are there and in sight she knows she is fine. Although I think she also felt safe with me and I probably was very protective of her, too.
The changes were more obvious to Bob because our visits were sometimes many months apart. To me the progression was incremental and easy to miss. But when I shared this with Dick, he saw something different and ominous. His take:
Jan's Story Page 9
