But the stress of caregiving is well documented, and the long-term effects range from dangerous to fatal. I was now in a legion of stressed out people where one in ten caregivers say their own health is worse because of what they must do, or force themselves to do. Consider just these two sobering research notes from studies quoted by the Family Caregiver Association (www.caregiver.org)
• Higher levels of clinical depression are attributed to people caring for individuals with dementia (such as Alzheimer's). Studies show that 30% to 40% of dementia caregivers suffer from depression and emotional stress.
• In 2005, three-fifths of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared with one-third of non-caregivers. Caregivers also reported chronic conditions including heart attack/heart disease, cancer, diabetes and arthritis at nearly twice the rate of non-caregivers (45% vs. 24%).
And with all that, I was better off than most because of my age: stressed-out caregivers aged 66-96 have a 63% higher mortality rate than non-caregivers of the same age. To put it bluntly, caregiving for a loved one is a job that will literally kill you.
Some people sensed what was unfolding and sent me notes and encouragement. One came from the always wise Billie Tisch who told me:
“Just when I think ‘older begets wiser,’ I am shaken by the realization that, however smart we are, whatever fancy coping mechanisms we have, however deep the love and caring of family and friends from whence our strength cometh, there are situations of profound loss from unfathomable tragedies for which there seem to be no solace or solutions. The weariness you describe, the loss you feel is clearly in that category.
“What I do know, from the ‘older’ (as above), is that life goes on, and that we don't get to choose regarding the losses which happen to both the loser and the losee. But we do get to choose (if we're lucky) how we handle the aftermath (or in your case, the during-math) of the grief.
“I guess the bottom line of this little dissertation is that one must keep searching for ways to continue to function for one's own wellbeing and for the salvation, however flawed, of the lost souls, and, importantly, must resist abandoning the hope that one might smile again and find glimmers of light for tomorrow in the darkness of today. Vaya con Dios on this journey.
Love continues to help, and I send mine. Billie”
Diane also tried to warn me, in her own way, but I couldn't hear it from her for a long time, either. She remembers what she thought in those moments. “Barry was hanging from a cliff with one hand and starting to slip with no safety net below.”
Diane saw red flares and heard fire alarms going off. She finally sat me down in the living room for a chat. She was careful with her words. “Jan has a disease and, because of that, there will always be people looking after her. But you are the caregiver, and no one is looking out for you.”
I thought, who the hell needs to look after me? This is about Jan.
“And you are going down.” And she put it bluntly so even I would get it: “You cannot help Jan if you are not here.”
I would have given anything to make Jan well, even if my exhaustion, depression, and sleeplessness ended with me not making it. In fact, the reality was just the opposite. All the comfort and care that I was giving, and what it was demanding from me, was not making any difference for Jan.
Ask something of me, anything that will make a difference. But there was no answer.
Walking Into Oblivion: Stage Six
Memory difficulties … worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may lose most awareness of recent experiences and events as well as of their surroundings … occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces … need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet … have increasing episodes of urinary or fecal incontinence … experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding. (Seven Stages of Alzheimer's Disease from www.alz.org, the Alzheimer's Association)
I remember the first time she forgot me. It was in Beijing. Her current medicines faltered and failed, and we were ramping up to a new one. It has the tendency to upset the digestive system so the dose started small, and during that initiation period she slipped rapidly.
We were in bed, together, and I was stroking her back. She lifted up, looked at my left hand, and said, “You have a wedding ring. Are you married?”
Yes, darling, I am married to you.
In a few minutes it seemed to pass, or did it? By now she was so good at compensating that I couldn't tell if she really remembered me or was just pretending. It was a glance into what was coming. I had read the books, talked with doctors and fellow travelers on this journey.
It was around this time that I met Joan Wieringa, a registered nurse who spent years in Seattle working in long term care. She did not know Jan, but she knew a lot about denial. She shared the story of her husband, ill, failing, and back in the hospital. It was, in many ways, the story I was now living.
For the last eight months, many declining physical and mental changes had occurred for Dick. I adjusted and just believed that when he went into the hospital this time I was now experiencing yet one more change and I would adjust and cope.
Late one afternoon a compassionate counselor asked for private time with me and kindly but directly told me that Dick was near death. At first, I gave her reasons and explanations that would allow me to continue the process of denial. I finally ran out of words, broke down into tears saying NO, NO, NO—only then finally accepting the situation for what it was.
With this acceptance, I could bring our children together and tell them that we were near the end of their dad's life. We made a plan for a family member to be present at all times. Dick died two days later with family present.
Joan had lived denial to practically the last moment of her husband's life, so she was well-experienced the day she looked across a table at me, and said bluntly what I didn't want to hear: “Alzheimer's is a terminal disease. Jan has a terminal disease.”
These were words I had run from for years, words I would not allow myself to either say or think. But denying does not stop The Disease. It has the endgame already plotted.
13
“On vacations: We hit the sunny beaches where we occupy ourselves keeping the sun off our skin, the saltwater off our bodies, and the sand out of our belongings.”
~Erma Bombeck
Maui Sun, Sea, Surf and Losing It
It started as a good idea that seemed to just get better. Go on vacation. Get Jan away from her stress about having Diane in the house, get me away from the stress of working by day and caring for Jan at night. Instead, we'd trade the rainy gloom of Tokyo in winter for Hawaiian sun! Sleep late. Sit on a beach. Go to dinner. Let the slow sunsets and easy trade winds of Maui calm and soothe.
I love how drivers on Maui will often pull over to the side of the road that runs along the ocean and get out of their cars, lean against a fender, and just watch the sunset. It's like hitting the pause button on life. And aren't vacations really a pause button, an escape, a chance to shed our daily work clothes and step out of real life?
We had been going to Maui for some years as the girls got older. It was an easy half-way trip; we flew in from Asia, they from the mainland. Everyone spent about the same time on an airplane and there were beaches and snorkeling calling to us all. We always stayed in the same general area around Kapalua and Kahana. It meant that one nearby video rental place still had us in its computer and we knew where the coffee and eggs were in the local grocery s
tore.
What a perfect place to take Jan for a break because here she might remember familiar places, and the sun and bright skies would cheer her up. And maybe cheer me up? The Alzheimer's came along with us, of course, but now I was used to that. The third day we were there, standing in a rental condo and looking west across the water, Jan gazed out the window and said, “Where are we?”
“Can't you tell,” I asked. “Look out the window.”
“It looks nice,” she said.
“We're on Maui.”
“Oh yes, I knew that,” she replied, when she clearly had not known. The conversation slowed to a stop as she stared at the water.
I still didn't know if she remembered visiting Maui before. The memories of us with the girls were long gone for her. And sometimes it had been just the two of us on vacation and that, too, seemed lost. But in fact, it was okay on this trip. I didn't care about missing memories, and I certainly wasn't about to get depressed on Maui. We got into swimsuits and hung out on the lawn at the condo, or waded into the ocean.
I have a picture from that trip; Jan is beaming with the smile that changes her whole face. She is standing in her swimsuit near the beach, happy in the hot sun. By the time I took the picture she had figured out where we were and was in the moment. It didn't matter if that moment would be lost as the next moment came along. It was enough that she was happy right then.
And it was here, for whatever unforgivable reason, that I would lose my temper with her. And when the dam broke, I couldn't stop myself.
It started because, as always, we wanted to look at real estate. An agent took us to see some houses on the hills above the town of Lahaina, where New England whaling ships once pulled in after their kills in the nearby waters where the whales would come to winter with their young. The houses on the hill were lovely. We liked one or two in particular and decided to have the agent drive us back for a second look. I was in my Maui uniform, a swimsuit and t-shirt, how Hawaiian, right? Since I didn't have pockets, I put the keys to the rental car in Jan's purse and put my wallet in the trunk of the rental car. We left the car parked at the condo complex and took off with the agent.
We saw several houses that day before the agent dropped us back at our condo. We were back for only a few minutes when I asked Jan for the car keys. “They're in your purse,” I said matter-of-factly.
“Okay,” she said. Then the ominous words from her, “Where is my purse?”
How could she not have her purse? She had never, not once, either lost her purse or gone out without one. I figured it was tucked away somewhere in the condo where she put it when we got back. “Where is it?” I repeated. We looked around. It doesn't take long to search a one-bedroom condo. No purse. “But you had it when we left,” I pointed out, “because I put the car keys into it.”
“I guess.”
Maybe it was being tired from jet lag, maybe it was being tired from coping with the constant forgetfulness, but I got angry. Gritting my teeth, I said, “Darling, we can't go anywhere because the car keys are in your purse.”
She stared at me and said nothing. There was nothing in her eyes that showed if she even understood. I started working the phones. Our real estate agent had caught a plane to a different island. No help there. I called the listing agent of one house we visited and where I suspected Jan left her purse. No luck there, either, since all I got was her voice mail. I then called the car rental agency, which was located at the airport on the other side of the island. Was there another set of keys, by chance? No. And there was a fee for making a new key because, these days, keys aren't cut at the local hardware store while you wait. They are electronic and it costs to have a new one programmed for a particular car. And how to get it to me … would they deliver the keys? Hawaiian hospitality ended at that point. No, they would not. They would give any new key to a cab driver who would bring it to me, but it would cost about a hundred dollars in cab fare.
I hung up and tried calling a local locksmith. Didn't people still do this? Yes, but for modern cars with electronic keys it takes time to get the codes, and it will be expensive and the rental car agency may not like a non-original key. But this was just a Ford, dammit. Can't people make a quick ordinary key for an ordinary damn Ford?
No.
Another try at the listing agent. Another request to leave a voice mail. Through it all, through this onslaught of people telling me what they couldn't do, Jan stood quietly in the kitchen, impassive. There wasn't a flicker of recognition that we were spending a precious afternoon of vacation not at the beach or relaxing, but dealing with car keys, and it was going to get pricey.
It was her impassivity and unawareness of what was going on that pushed me over the edge. I lost it. I don't remember ever shouting at her before, but I shouted now. “Don't you understand? We can't go anywhere! And my wallet is in the trunk, and that means we have no money or credit cards. We can't even buy groceries or go to dinner or buy a sandwich because every penny is in the wallet. Don't you get it … don't you see what you did?”
I look back at this with shame because I was yelling at her when she had no idea what she had done, and no ability to understand my anger. Instead, she stared back with no emotion. My words are burned onto my soul. It was the rage I had always directed at others, but never at her. How could I blame her for something she hadn't done and for something that terrified her? What kind of person had I become?
I close my eyes now and can still hear her scared, shaking voice from the early days of The Disease. “I'm losing my mind, aren't I?” I heard it then, too, even as my anger exploded. How could I be so angry? She hadn't done this on purpose. She was barely aware of what she had done. Maybe not even aware.
I reached down somewhere deep and calmed down before calling the rental car company, where I ordered the new key and had a taxi bring it across the island. About ninety minutes later, the taxi showed up. I was handing over a hundred dollar bill for the cab fare when my cell phone rang. It was the listing agent. She was sorry, she'd accidentally put her phone in the trunk of her car and missed my calls. A quick call to the people in the house and, yes, they had the purse. She offered to come pick us up.
In the end, it was a simple mix-up easily fixed, even if I was out a hundred bucks. I looked down at my new hundred-dollar replacement key and said to the agent, “thanks, but I can get there in my car.” Jan and I drove back to the house, where the couple graciously handed over Jan's purse.
At this point, Shakespeare would say: “All's well that ends well.” But it wasn't. How could I reach the point of being so frustrated that my anger erupted and I turned it on Jan? I wondered whether I was now the sick one, the one without perspective, the one whose emotions were so raw that I attacked the one person least able to understand, let alone know enough to even say, “I'm sorry, darling,” because she had no idea why I was so furious.
For the rest of the week, even as I helped her relax in the surf or go out for lunch or dinner, I could still hear me shouting at her … “Don't you understand?” … and from farther back, from a moment of her still having awareness and fear, her words … “I'm losing my mind, aren't I?”
I was the one she trusted most, the one she needed most. What had I become?
TIMELINE
April, 2008
Barry's update to family and friends: Written two weeks before placing Jan into assisted living
Dear friends,
I hope at the end of this I can tell you of Jan being happy. There are no guarantees. To those who know her and love her—or even those who simply cherish her because she is always so bright in our lives—you already know that we are losing her. And now we have come to a new moment. Except for a rare few of her family and friends which I will explain, she is soon gone from you.
In early May we will move Jan into an assisted living facility. And, once there, this may be her home for the rest of her life. The facility is in Bellevue, WA, a metropolis of its own next to Seattle. She was raised here alm
ost all her life. Her mom and most of her brothers and sisters are here, along with friends going back to college days. This is a good thing.
I came here to find a place and make the arrangements. She does not know about this. She will not be traveling with me anymore, as it is too confusing for her. I am told that I should not even take her to California or Hawaii or anywhere because it will leave her distraught and confused about where she is and where she lives.
This confusion is a major reason we need to settle her now. I have been saying goodbye to Jan in small ways for some time. Now, with little warning, she is physically leaving me and most of you will likely never see her again.
Jan will be living in a lovely two-room apartment, with huge windows on two walls of a ten-foot-high ceiling living room. As you know, she loves light and even on gloomy days this room is lit and cheerful and looks out onto the front veranda. It will be painted her favorite light pink/salmon color, and we will decorate it with favorite antiques and art work from Asia. Our goal is that when she looks around she will always see things familiar and cheerful and, being Jan, most will be BRIGHT red and gold.
Why now? In no particular order, here are some of the reasons. We have a wonderful live-in caregiver, Diane Malone, who works hard trying to get Jan out and about and stimulated with activities. Jan now sees Diane as the enemy and proof of her illness, and is increasingly defiant about going out with Diane or even talking with her.
You may remember previous notes about the afternoon Anger Monster. Now this anger at Diane is starting at breakfast and sometimes lasting all day through dinner. As hard as it is for Diane and me to cope with this, it is way too hard for Jan feeling this emotional upheaval all day.
Jan's Story Page 13