What she says is true. Jim and I cared for our wives out of love. When the person we loved went away from us, not in a day or a week, but over years, we never dreamed we would find that kind of love again.
Jim shared his years of being the main caregiver for his wife, and I nod my head knowingly. We brought all the love and comfort that we knew how to give, even to the point of threatening our own health. We adjusted our finances and watched salaries and savings diminish, and yet that and more would have been an acceptable sacrifice if it had made a difference. Did it matter that we knew how futile these efforts would be? It didn't stop Jim from trying, and it didn't stop me from despair when The Disease gained new ground.
We talk about those who believe they have the right to judge us. Jim introduced two concepts that let me consider the place and importance of various people, and use that to weigh their influence. Jim labels these as status and eligibility. The woman who is now in my life has high status because she has a stake in making it work for us.
As for a friend of Jan's who might disagree with my treatment choices? She can feel as she does and tell me what she thinks, but her status in my life is significantly lower.
Jim brings in the second idea: eligibility, as a way to set status. Put simply—there are people who have the right, by experience or knowledge, to help guide us. “Someone who has walked in your shoes has eligibility,” he says. “Or an expert in Alzheimer's Disease is eligible because he or she has experience and specific knowledge that we don't. In a baseball game, there are players and fans and sportscasters who watch each play and can offer their opinions. But only the umpire has the right to call balls and strikes, safe or out, so he is the only one eligible to make those decisions.”
In a baseball game, it is pretty clear who is in charge. In our lives, in our situation, Jim and I must decide for ourselves who is eligible. It really isn't that difficult. It took time for me to hear what those with medical experience were telling me, and once I began to listen—Jim would say that was giving their advice and information high status because of their eligibility—I was surprised at how often they agreed among themselves on what was best for Jan and for me.
And then there were others trying to influence me and demanding high status by the force of their anger or the strength of their own opinions. For a while, I listened and reacted to them not because they were experts on either Alzheimer's, or caregiving, or even on Jan's life at that point, but because they were loud.
Jim faced much the same. “They are performing a degradation ceremony. They are kicking us out of the community of what they consider respectable people because we violated their standards. We must say back to them, you are not eligible to do this to us because you don't have the competence to make that call, you don't have relevant experiences.”
They are not the umpire unless, because of guilt, we allow them that role.
“Survivor guilt,” clarifies Teresa.
As I nod my head in agreement, Jim asks me a practical question. “Where does that guilt take you?”
I flounder to answer. It has driven a whole series of decisions about caring for Jan that are, in fact, more about my guilt for not being the sick one, for having the life that is blossoming and not the life that is shutting down.
I tell them how I hired a companion who would visit Jan three or four times a week in the care facility. The companion reports in her e-mails that their outings are cheerful and upbeat. In truth, Jan did not remember these outings a minute or an hour later. And is Jan “happy” in the moments with the companion? It is another question that no one can answer. What she says, when she can make sentences we understand, changes day to day. And the concept of “happy” is now beyond her words.
I ask Jim about e-mails I get from those who visit Jan, telling me she is “upbeat” or “today she was engaged.” This, despite the fact that Jan's language and memory are failing, and she shows other serious signs of ongoing deterioration.
Some people, explains Jim, will fill in the blanks from their own need to have the old Jan there. “A friend might say to her, ‘Jan, isn't it fun getting our hair cut?’ and Jan nods her head and says ‘YES!’ and it seems like she is engaged. They have not pressed their nose against the reality.”
“I can't really blame them,” I respond. “God knows I didn't want to press my nose against reality, either.”
It is funny that when I first met them, they sat stiffly and properly through afternoon coffee and then dinner and hours of conversation. Yet the next day, at breakfast, they trusted me enough to allow themselves to touch each other, or hold hands, or affectionately rub each other's arms in front of me.
We do not say this next part out loud because it does not need saying in our peculiar little universe. There is a line. On one side is the past. Those were the years spent fighting The Disease, and the endless dark nights when we slept next to the woman we cared for and loved. And in that darkness we choked back tears because the woman The Disease left behind wouldn't understand why we cry, and the crying would only scare her.
On the other side of that line is the chance at a new love and caring and experiences with someone else. Not everyone will choose to cross that line. When Jan started leaving me, I didn't want anyone else. Then, as time went on and I started reaching out to see if there might be someone, it painfully drove home what I had lost. These were not women I wanted to be with the rest of my life. There were several I didn't want to be with the rest of the evening.
It is Teresa who asks the question Jim and I cannot answer. We can only hope that we have guessed right. “If you really love someone, would you want them to be alone because you went away from them?”
Would Jan? Would Jim's wife?
The answer Jim and I have found may only work in this private little universe, but that is where Jim and I shall live for the rest of our lives.
TIMELINE
June, 2009
Note from Pat Ness, who helped me find the assisted living facility
With the physical death of a loved one, we can openly mourn our loss at a funeral or memorial service. But there is no such ritual to support us in an Alzheimer's loss.
Alzheimer's disease is called “AMBIGUOUS LOSS” (from the book by the same name, written by Pauline Boss). Our loved one is no longer capable of participating in our lives; in our marital relationship, in parenting our children, in making the many decisions we used to share.
When my mom suffered from Alzheimer's and no longer recognized me as her daughter, I remember walking down the street and being angry at strangers, saying to myself, “How can you go on with your lives at a time when I'm experiencing such sorrow?”
And when my mother would stare at me blankly not knowing who I was, I wanted to shake her and say, “Snap out of it! Be my mom again!”
But Mom was not there. Or was she?
~Pat
23
“You can clutch the past so tightly to your chest that it leaves your arms too full to embrace the present.”
~Jan Glidewell, author and newspaper columnist
The War Within
I had a friend, a producer at CBS News Sunday Morning who had traveled to the Soviet Union and worked on stories with me. Together we did a profile on Rudolf Nureyev coming back to dance at the Kirov in what was then known as Leningrad, renamed St. Petersburg. It was Nureyev's first return to the Soviet Union since he defected in 1961. A few years later my friend developed cancer and struggled with chemotherapy. When he went into the hospital, the cancer ate at him, shrinking him, changing him.
When I asked to come visit him, he said no. My guess was that he did not want my last memory of him to be as a shriveled sick man, helpless and ill on his deathbed. Better to remember him as he once was; full of energy and enthusiasm, loving his work. I think about this because I reached a point of wondering how long I could absorb Jan's changes, and how much more I could stand as I saw myself erased out of her life.
Each new visit was ab
out seeing how much she had lost, such as her ability to find a word or make a sentence. And there was pain in seeing her stare hard at me, this woman I love, who now couldn't place me. There would be a flicker, a moment where I thought she saw something, and then it was gone.
And even so, I'm not sure those moments were real. How could I know? She cannot tell me. She doesn't understand, because she is in a world apart from the rest of us, a different world even from the others around her with their Alzheimer's.
She still talks about someone called “Barry.” He is a part of her daily life and as best I or anyone else can tell, they still have conversations. One day when the dentist came to the assisted living facility, she went cheerfully for a routine exam because, as she later explained, “Barry told me to do it.” In fact, I had told her no such thing.
That Barry, the one alive somewhere in her memory, is the one she still hears. She takes comfort in their togetherness. I have no influence on what he says or what he tells her. On one visit when I went to see her, we went to dinner at her brother's house. It was just the four of us, chatting about the remodeling they were doing and how it was going.
I thought Jan would feel comfortable, this was her brother and his wife, after all. Jan was having a good time. Later her mother shared the rest of the story. As Dave and I were talking, Jan and Marie were in the kitchen and Jan turned to Marie and said, “Who is that man out there? He's really cute, isn't he?”
“That man” was me. How nice it was, Jan's mom said, that even if Jan didn't know who I was sitting at a table a few feet away, she was still attracted to me. To me, it raised one of those questions I had been putting off. Did I want to see her someday when she had deteriorated to the point where she could no longer feed herself or use a toilet, take a shower, or dress? And how about when she could no longer walk by herself, when her body slips into the end stage—the vegetative state? It is coming, it is out there. The Disease fully intends to make it so.
I discussed this with Rob Blinn, the therapist who helped me with PTSD. He put my ongoing visits watching Jan change into one sentence, “It's like you are going to the same funeral, over and over again.”
How many times could I experience fresh grief? And I also needed to accept that no future modern medical miracle will bring back from the dead the brain cells killed off by The Disease. Which means what is forgotten is truly gone. And that included me.
“If you see her once a week or once a year,” counseled Jullie Gray, our care manager, “it won't make a difference to Jan, because she won't remember.”
I wondered how Jan would feel. Is this how she wants to be remembered? Is this how she wants us to end? It was like my friend with the cancer; when is the point where we stop wanting those we love to see us as we falter and fade. Would she be horrified at what is ahead? Would she prefer that I let her go, let her die if a moment provides the opportunity, before she reached that stage?
I don't know because I didn't ask her. It took Jan being hurried to the hospital from the assisted living facility to force me into wondering about how and when Jan's life should end. As her husband, I am the decision maker (this varies from state to state), and I don't know her wishes.
The medical incident started when Jan developed abdominal pain and our care manager, Jullie Gray, sensed something serious and quickly drove her to the emergency room. They diagnosed diverticulitis, an inflammation of what looks like tiny pouches in the lining of the colon. The result can be a dangerous infection spreading throughout the body. The treatment options range from antibiotics (with fingers crossed) to emergency surgery.
For a normal person, this would be tough. You cannot eat because the colon must not be agitated. This gives the inflammation a chance to heal on its own while the antibiotics fight off any infections caused by leakage. During this time, the body gets fed and medicated by intravenous (IV) tubes. It is about being in a strange place in a strange bed with nurses and doctors poking and prying day and sometimes night.
For Jan, as the uncomprehending patient, it was a horror movie that stretched endlessly day into night, leaving her in a state of fearful, terrified disorientation, instinctively seeking escape from the hospital. The first problem came with the IV drips. She could not understand what they were for, so she yanked them out. Then she couldn't accept being confined to bed. She wanted to walk around like she did at the facility, so she would just get up and go, leaving the IVs behind.
Dealing with the nurses ignited her anger and, at one point, she struck out at a nurse. She could not understand where she was, or why, and was instead reacting in raw fear. By day, there were family visitors and Jody, the woman I had hired some months earlier as Jan's occasional companion. They stayed with her, walking with her in the hallway. It was not always sedate. At one point Jody found herself pulling Jan away from an elevator door. It was a wrestling match. Jan was leaving “right now,” and only Jody's physical force stopped her.
By night, the hospital arranged for a sitter in the room who would watch over Jan, help her navigate to the bathroom, keep her from pulling out the IV drips. The nurses were dubious about giving Jan the anti-anxiety medication we were already using at the assisted living facility. They soon came around.
The hospital stay—I called it the hospital siege—went on for three days until the antibiotics worked, the problem eased, and surgery was no longer on the table. For the moment. Jullie Gray took Jan back to the assisted living facility just before lunch and watched as Jan found her way to her seat at her table in the dining room. Someone asked where she had been and Jan answered cheerfully, “I was on a boat trip.” And calm returned.
But it was the beginning of a new turmoil. The surgeon wanted a colonoscopy to see if he still needed to operate and remove part of the intestine. Preparation for a colonoscopy means the bowels must be flushed beginning the day before the procedure. The patient cannot eat any meals the day before, nor breakfast the morning of the procedure. Back and forth we went with ideas and plans and strategies until we realized there was no way we could put Jan through this.
Since she could not comprehend why the procedure was needed, she would simply fight whoever tried making her do this, maybe fighting back literally. Her existence was about maintaining her routine, which meant dinner at night and up in the morning at her regular time for breakfast and lunch.
Which is why Caron, seeing this more clearly than I, sat down one day during the colonoscopy debate and sent me an e-mail that asked the questions I had not faced in my narrow focus on the need for the colonoscopy.
“I must ask you; do you think this procedure is necessary? What exactly is it for? Jan has maybe two years more in which we can enjoy her, and she can respond to us. Is it to prolong Jan's life? If so, why?”
Why? Well, because that is what we as a society instinctively do. I had signed orders that Jan be resuscitated in the event of an emergency, and I did so without hesitation, and worse, without thought. To me it was automatic because that is how we care for someone we love. But is it?
How I wish Jan and I had talked. It would have been easy for us to write our desires down when she could still do that, shortly after the diagnosis. How many times in my imagination can I hear myself just saying it; “Darling, let's write an essay that spells out what kind of care we want as we approach the end of life.” But I never said it out loud. Because it meant putting the inevitable into words, and that would mean admitting the end of hope.
In asking people about their desires, the answers are surprisingly similar: Don't keep me alive (the person will say) if my life is about tubes and machines and I am not even conscious. And if it seems just that simple … it isn't.
I talked on the phone at some length with Dr. Margaret Faut Callahan, Dean of College of Nursing, at Marquette University in Milwaukee, WI. “My mother had Alzheimer's Disease” she told me. Dr. Callahan's research interests are in the areas of pain management, health policy, and palliative/end-of-life care. “Mother had not communicated
with us for two and a half years. Near the end she had not eaten or been able to drink anything for two to three weeks, and had not urinated for well over a week. This was really end of life.”
Dr. Callahan and her sister stood at the bedside with her mother. “My sister started singing ‘When Irish Eyes Are Smiling.’ I looked down at my mother and saw a tear rolling down her cheek. We took it as a sign from God telling us that she will be okay.”
We cannot always know, she said, what is happening in the brain near the end of life, or how much awareness our loved one has. And this can be a difficult moment. Do you yell for nurses and start inserting tubes, or do you look down on your loved one and say that he or she would not want to endure a few more moments or days of technology-sustained existence.
Dr. Callahan pushed the question a step further. If her mother was able to hear a song and respond even in a comatose state, could she also suffer pain from any treatment but not be able to tell anyone?
Within her story there is a plea from someone who is both expertly trained, as well as sadly and personally experienced; do not wait to have the end of life discussion when the family is gathered at a hospital bedside, often due to an emergency or sometimes without warning.
“People who deal with end of life when they are thirty-year-olds,” she said, “always do it better because they don't think they are dying.”
And Alzheimer's has its own special torment, that for some, even near the end, the body still looks normal even though it is as decimated as a disease like cancer or AIDS would leave it. It makes acceptance of the illness difficult.
Bonnie Dank, the sister of my old friend, is the Psychiatric Nurse Practitioner at Copper Ridge, a 126-bed facility in Maryland with outpatient care for the “Memory Impaired.” It is affiliated with Johns Hopkins Medical Center and part of the Episcopal Ministry for the Aging.
Jan's Story Page 20