Thursday, December 27, 2012

When Words Fail

For months, even years, I've been using a singularly ineffective way of communicating with my Alzheimer's afflicted husband. When he gets agitated and combative, I move in, talk more, explain, argue. And he becomes still more agitated, edging toward violent incoherent threats. What's wrong with this picture?

A couple of weeks ago, Pat's speech therapist Teresa was trying to work with him in the late afternoon. He'd had it with strangers coming into the house and doing he-didn't-have-a-clue what with him--nurse, physical therapist, occupational therapist, Senior Services worker, paid and volunteer caregivers--he was done. Instead of trying to foist more activities and interactions on him, Teresa simply sat on the couch and watched him. If he came to her, she would offer him a card from her picture deck, or a pen, or her hand. He would either take the offered object or not. If he did, they would have a short interaction about it. If he didn't, she would return to waiting.

It reminded me very much of the "join up" techniques used by Monty Roberts in training horses and the de-stressing behaviors that Temple Grandin uses to deal with frightened livestock or pets.I don't mean to compare brain damaged people to animals. Rather, I want to point out that when someone is unable to speak or respond to verbal cues consistently, it's worth taking a look at non-verbal communication of fundamental feeling states such as safe versus not-safe as a paradigm for helping dementia patients and caregivers send and receive comprehensible cues.

For example, right now, my husband is pacing the hall outside my office and whispering to himself. He does this when I'm working at the computer. It drives me nuts. But I now understand that it's an expression of not wanting to disturb me and a means of self-comforting while my attention is elsewhere. In the past, I would have gone out and asked him to stop, he would have gotten angry, then I would have gotten angry and explained all the reasons I need my writing time (none of which he can understand) and before either of us knew it, we'd be in full-on conflagration mode.

Now, understanding what he's doing, I either chose to work in spite of the annoyance, calling out an occasional agreement or compliment, or--and this works better--I stop, go out and ask if he'd like a coffee or some yogurt. Then I work in the kitchen where he can see me  and return to my office after a few minutes. This focused interaction seems to reassure him and keep his self-soothing behavior from spiraling into agitation through the late afternoons, the so-called "sun-downing" hours in dementia circles.

I've been practicing this alternative mode of communication since we had a major blow-up the week before Christmas. I was seriously considering returning Pat to the hospital and others were supporting me in that choice. But when I saw what Teresa did, I was certain I could do the same. She gave me the assignment of stepping back and observing Pat's behaviors to discern what they mean and how he is using them to communicate when words fail. In doing this, I began to let him take the lead in our interactions throughout the day, rather than forcing them to fit around my other tasks.

It's actually fascinating to see how he uses actions and even incomprehensible speech to communicate mood--whether happiness, anxiety or anger--and to try to connect with me emotionally.  As I tune in to what he's saying with his actions, my frustration level drops as well. I become the student of this disease, learning what communication is at a very deep level, deeper than the brain damage. What I've discovered is that, in the final analysis, communication really is connection more than content.

Sometimes, rather than addressing Pat verbally, I'll hug him, or smile at him and look him in the eye, or hand him an object that he can safely carry around. He likes carrying things from one part of the house to another. In the past, this angered me, because it adds to my workload to carry the thing back where it came from. But I'm beginning to let go of that--If the photo album ends up in the (clean) casserole dish, who cares? I can move it later, or not at all.

The critical piece in our interactions is that we connect, that Pat knows I am related and relating to him. This linkage increases his feeling of security and comfort. The result is a calm and happy household with two people who express their love for each other and feel safe in each other's presence. I am not saying that it's easy. I have to sacrifice a lot of personal time and even some self-care to achieve this result. And I have no idea if it will continue as his ability to relate and understand decline.

I hope I can bring someone else into our home life who Pat comes to trust and who practices this "join-up" behavior. Our very part-time caregiver Sandra, a ranch woman, already communicates this way with him. I learn a lot from her. But I'm praying that, when we move back to California, I'll find a person or a couple who can live in with us and communicate with him in a way that will complete a circle of support and safety to sustain Pat for the rest of his life.

Monday, November 19, 2012


The trees are brown from a hard freeze, the Sangre de Cristo mountains are streaked with snow and Pat is home. This time, I think, for good.

I used the time he was in the Rio Rancho hospital to connect with caregiving volunteer organizations, Santa Fe Senior Services and a night sitter so that I'd be ready with support when he arrived. I know now that I can't be caring for him 168 hours a week and setting up assistance at the same time. The organizations, Coming Home Connections and Palliative Care of Santa Fe, are simply wonderful and very willing to help. The Palliative Care director didn't think he's a candidate at this point for their services, so she is instead organizing a corps of neighborhood volunteers (we happen to live in the same enclave in Santa Fe) who will help me with yard work, painting the interior of the house and other odd jobs that I can't seem to get to on my own.

In addition, Pat will be back with Gentiva Home Health. This is a national home care corporation and, if they are as good elsewhere as they are here, I highly recommend them. The nurses and therapists are smart, open-minded, kind and skilled. The care they provide is covered by Medicare and families can, if need be, switch from the therapy-based care to hospice as the patient becomes less able.

The most wonderful piece of this schedule of care that I've developed with lots of help is night sitting. Kevin Long is our night-time helper, referred to me by Coming Home Connections and much praised by Palliative Care. He is kind, generous, practical, friendly and very very calm. Pat accepted his presence immediately, enabling me to sleep log-like in our guest room three nights a week. What an incredible gift! I'm transformed by it, able to be calm myself and gentle with Pat instead of frustrated and exhausted by sleepless nights.

The other profound blessing in all of this has been the loving, amazingly generous and knowledgeable presence of my cousin Molly Kelly. There is simply no one like her. Molly is a medical doctor working for UNM's Locum Tenans program, which provides temporary doctors for rural health clinics throughout New Mexico. She's worked everywhere from Raton to the Rio Grande pueblos, to the Navajo clinic at Pine Hill. She loves her work and sees herself primarily as an educator for people with little access to healthcare information, using the diseases that bring patients into the clinic as a means of teaching them about healthy diets and healthy lifestyles.

Molly helped me bring Pat up from Rio Rancho (my car blew a head gasket last week), then stayed all weekend to be Pat's helper and my support person. We've been close cousins since childhood, when our families intermingled through various life events. I can still remember my mother calling me at the Kelly's to ask if I was ready to come home. The answer was usually, "No!" and so I'd stay a few more days. The extended family lesson that we learned then endures into the present and I am so grateful. My advice to any caregiver is to get an extended family, blood relations or not, a community of people who really care what happens to you and your beloved and will step up, almost without being asked.

This morning, Pat and I were sitting at breakfast. I was spooning oatmeal with dried cranberries and walnuts into his mouth and handing him his coffee cup for each swallow. We were laughing at a Halloween card my mother sent us last month. I found that I could fully focus on him and that, as a result, he was able to respond to me. It felt like we were a couple again, together.

That's the gift of adequate support, for which I'm deeply grateful this Thanksgiving. I went too long without it--I hope that anyone reading this who is or will one day be a caregiver takes this lesson to heart. Get support. It's not just for you, though that would be reason enough. Your well-being has a vast impact on that of the person you love. It is precious.

Happy Thanksgiving, dear readers.

Monday, November 12, 2012

Two Months, Four Facilities

Pat stayed at UNM Psychiatric Hospital for 24 days. By day 17, his sense of humor had come back. By day 19, he could use a spoon or fork, kick a ball, shave himself and help me dress him. By day 20, he had peaked in terms of recovery. Talking--not too intelligibly but cheerfully, laughing at the jokes of others and every now and again coming out with a quick verbal jab and that beautiful, familiar sly grin.

His son came from California to see him a few days before Pat was discharged to a nursing home in Santa Fe. He was so so happy to see Chris. Something I've seen with dementia patients is how a joyful experience involving other people will bring them out of the dark for a time. They seem to try harder, to reach for communion and connection. Pat does this often, trying harder to be sociable, kind and communicative when he's around people he likes.

Our drive back to Santa Fe was uneventful, even fun. But it ended at the nursing home, the place I call the home of horrors. It was nice looking with a big pleasant lobby and an open patio with plantings and shade structures. That seemed hopeful. We arrived after hours and there was no one to direct us to Pat's room. The four of us--Pat, Chris, my cousin Molly and me--trooped down a hallway and found a person in scrubs who seemed to know that Pat was coming. She ushered us into a room with two beds, one already occupied by a very sick elderly man with gentle brown eyes.

And there we sat for the next three hours, waiting for someone--anyone--to tell us what to do next. The officious nurse ignored us. I would later learn that the night nurses had to give meds to as many as 64 patients, so her harried attitude was justified.

I could write a dozen tales of terror about the place, but will focus on a few and how they affected Pat. The day after he arrived, Chris and I both noticed a marked decline in his sociability. This happens with dementia patients in new settings, so I didn't think much about it at first. The next day, they switched him to the locked ward. There was a fear that his constant pacing could wear him out and cause him to collapse.

In this unit, there was an outdoor patio adorned with a chain-link fence, a very large laser cut metal sculpture and an ornamental olive tree with a branch sticking out over the path at head height for anyone taller than 5 feet. My cousin discovered a bag of Spectracide lying by the patio wall. She also saw a patient pick up pills spilled by the nurse and had them back to him with a smile.

By Tuesday, Pat had multiple cuts and abrasions on his head, legs and hands. The nurse mentioned that he seemed to run into things a lot. Since Pat had been alone out on the patio, the nurse had no idea where the injuries came from. Nor did he seem interested in putting any antibiotic/antiseptic ointment on them. I brought in a camera the next day and started recording every visible injury. There were lots of them. One bruise wrapped around his arm and included nail marks etched into the back of his wrist.

I also started inspecting Pat's chart every evening and that's how I discovered that the attending doctor had put him back on the drug, Seroquel, that initiated his sojourn at UNM. I think I might have screamed. I insisted that the nurse not give him another dose until the doctor contacted me and to my surprise, she complied.

This was the first salvo in a running battle between the doctor and myself. She never discussed Pat's case with me, even when I tracked her down in her cramped little office near one of the nurses' stations and gently suggested that I might be able to help her understand Pat's case, since I'd been working with his doctors since 2005.  She appeared to take this as a personal affront.Two days later, checking his chart with the nurse, I found that his Alzheimer's meds were being given at the wrong dose. When I asked the doc about it, she said, "Oh, it was a mistake."

Meanwhile, Pat was losing weight faster than a jockey before the big race. The food was hideous (try a pale pink hot dog in a dry bun with no condiments), so he simply refused to eat. I was bringing in hamburgers, yogurt, ice cream, anything I could think of to keep the fat on him. He lost 12 pounds in three weeks at the nursing home, on top of 10 pounds lost at UNM. In August, he had weighed 142. By mid-October, he weighed 120.

One day, I walked onto the ward and found Pat walking with a strange lean to the left. I asked the nurse, the physical therapist, the PA, but no one seemed to know anything about it. The next morning, early, a nurse called to say he had come out of his room bleeding from multiple cuts and abrasions, but she had no idea what had happened to him. When I got there, the listing was worse and he had cuts and bruises on his arms and hands and a very sore wrist. I spent the day trying to get the doctor to just come and look at him. When she finally did, she shrugged and said that she couldn't tell what was wrong but she would send him to the hospital if I wanted. Unsure what to do, I said I would watch him. After dinner, he complained that his back hurt a lot. I ran my hands down both sides of his spine and discovered a huge knot on the right, near his kidney.After the nurse checked it out, she called the doctor and Pat was off to the hospital, free of the dreadful place at last.

Why did I leave him there so long? Well, back at UNM the social workers had told me that he had to be institutionalized for 30 days in a nursing facility in order to be eligible for Medicaid payments to cover the part of his hospitalization not paid for by Medicare. What they didn't tell me was that the 24 days in the senior psych ward counted. In actuality, I only needed to have him in the Santa Fe facility for six days. He was there for 20.

By October 19, he had spent enough bed rest time that his back had healed. I took him home. So sweet to see his head on the pillow next to mine again, to sit on the patio in the sun and talk, or not. We listened to music, took walks, did grocery shopping, even went out to dinner one evening. It felt like we'd reached a tiny island of normalcy in the crazy sea we'd been negotiating for months. But we hadn't.

After two days at home, Pat just stopped sleeping. He paced, he swore, he sat on the bed, half lay down and then got up, over and over again. One night, he spent the entire night standing in the bathroom, staring at the bathtub. Six hours. My sanity evaporated, too. I didn't realize how fragile my regained strength was. By Saturday, he was violently sundowning and I was reacting out of a sleep deprivation that made me completely irrational.

Back to the hospital and two full days in the ER waiting for a slot at UNM  which never opened. St Vincent's finally admitted him on Monday and we spent the day watching Hurricane Sandy devour New York and the Jersey Shore. At that point, Pat understood what was happening and asked where the storm was. Finally, a bed opened up at UNM Rio Rancho, a brand new hospital north of Albuquerque. It sounded like a dream come true. He could get his meds adjusted, begin relearning how to sleep through the night and come back home in a few days. Except that they drugged him up to transport him, then took him off all medication for four days. God only knows why. He has not really come back.

The doctor, who haughtily informed me that he was following the Harvard protocol for titration, is gradually adding Pat's regular course of drugs back in. I am praying that it brings him around to something like where he was when he left the other UNM hospital. The doctor tells me not to hope for too much. He tells me to consider hospice. My hands are suddenly freezing cold.

I don't know what too much hope might be.  

Friday, November 2, 2012

Stepping Down, and Down Again

It still seems like summer in my head. Not because the trees are green anymore, or the weather is hot and still (it is awfully warm for November, but that's another blog). It's just that I haven't written here for so long and so terribly much has happened since June. There's no quick explanation why it should come as a shock that the cottonwoods along the bosque are flaming yellow, glowing against the smoky blue sky as I drive south toward Albuquerque. So I guess I'll try to patch together some kind of synopsis of this long silence on my blog.

The death of our dear dog Rex sent Pat down a huge step that I couldn't see at first. We traveled to Colorado in June and he did great--got to visit with his old carpenter buddy Dennis in Durango and recall the carousings of yesteryear. After the first day there, I asked if he wanted to go home or go on up to Grand Junction and see our niece, her husband and our utterly adorable grand-nieces. He chose Grand Junction and adorable little kids, of course, and we had a great visit there. On the way, we drove over the pass by Copper Mountain, around Silverton and Montrose and out through the badlands that open up into the amazing green of the valley where Grand Junction sits below the Colorado Monument. It was fun to comment on the beauty all around us, sharing life in an almost normal way.

Back at home, though, things began to fall apart. While he used to enjoy outings, Pat became sullen and always wanted to go back to the house. He began pacing and talking to himself, which he'd never done before. I wondered if it might be the medication he'd started about the time we went to Colorado. Suspicion mounted as he became more volatile and we found ourselves arguing loudly again and again. I called his neurologist at UNM and he referred us to a psychiatrist. The latter was puzzled by Pat's ability to recall recent events and ordered a PET Scan, which provided--after all these years--a definitive diagnosis of vascular dementia, with more recent Alzheimer's development and cortical shrinkage. Somehow, the last was the most alarming to me. The idea that my husband's once-brilliant brain was shriveling, becoming smaller with no real hope of recovery, horrified me and made our situation seem somehow irredeemable.

In the midst of all this, I made the fatal error of agreeing to pet-sit for a friend's pitbull, a charming dog named Whitey, who I thought might cheer up Pat. Pat somehow got Rex tangled up in his mind with Whitey and decided that our friend had stolen Rex. His intense confusion worsened when Whitey, who himself suffered from enormous separation anxiety, began to misbehave--chewing holes in our gate and window sills, battling a skunk in the backyard. I felt that I was coming unglued and finally told our friend to come while we were out and take the dog. I kept Pat away all day, and he seemed not to miss Whitey/Rex when we got home.

But the pacing and muttering and combativeness increased exponentially and I found myself emailing both doctors weekly, finally pleading with them to do something. One afternoon, after crying hysterically on the phone the night before as I tried to explain the situation to my mother and screaming at Pat to stop the pacing and muttering, I tricked him into going to the ER. I said we had a doctor's appointment and he didn't guess the truth till it was too late. So much for honesty and integrity in marriage--this disease takes all.

I had arranged with his psychiatrist to admit Pat to the  UNM Psychiatric Hospital's Senior Behavioral Health unit. Or so I thought. Instead, we spent twelve hours in the ER waiting for admission to be granted, most of them trapped in a small room without any medical intervention for my husband who was now in full-blown psychosis. It was as if the two hospitals were communicating via tin cans with a 60-mile long string tied between them. I thought they would be admitting two of us before it was over.

When you are a caregiver, you become more mother lion than rational advocate when the well-being of your beloved is in jeopardy. After three hours of utter neglect, except for being told we couldn't leave the tiny room, Pat wet his pants and I leaped out of the room, hollering at whoever was in the hall that WE NEEDED HELP--a bathroom, dry clothing, food and water to drink!!! ER nurses probably hate people like me. I often feel like they've never seen anyone like me. In this instance, I didn't give a flying poo that they seemed to prefer patients who quietly suffered and died on their watch. And my histrionics got results, though I immediately experienced a huge attack of shame at being so loud.

Finally, the ambulance arrived and we careened off into the August night. Following them at a brisk 85 mph, I gripped the steering wheel to stave off exhaustion and prayed to God to keep all the coyotes and feral cats off the freeway. Pat meanwhile was sleeping off a massive dose of Haldol in the back of the ambulance, injected in the ER to calm him down enough to draw blood for myriad tests.

That night should have warned me of things to come. After a blurry conversation with the admitting psychiatrist, whom I never saw again, I crawled into bed in a nearby motel and fell into a troubled stupor. In the morning, I dragged myself over to the hospital and submitted to body wanding and purse lock-up for the first of probably sixty times over the next 28 days. You cannot take your purse onto a psychiatric ward, or your cell phone, or anything sharp, or a pen, or stuffed teddy bears, or magazines.

I did smuggle in photographs of Pat in his childhood, youth and adult years, of his son Chris, of his parents, sister, first wife, best friends, of us at our wedding, of several building and fine finish projects he'd done over the years. I had to write his name on the collar or waist bands of his clothes, the soles of his socks, the liners of his shoes. As if he were a small boy heading off to summer camp for the first time.

He was still drugged and completely groggy when I saw him in the morning, but he recognized me and held my hand for a long time. The doctor was a young resident who once lived in Monterey and knew about Cambria and the Big Sur. Pat liked him. Dr. Jones added an anti-depressant to the drug regimen and took him off the problematic anti-psychotic and sleeping aid.

I stole away after a couple of hours, afraid Pat would get frantic if he saw me leave. That would become my pattern for the next two weeks. The rest of that first afternoon I spent wandering around a huge mall in Albuquerque. I hadn't been in a real mall in years. The utter triviality of it, the colors and the noise were distracting, almost comforting. I bought a sleeveless top in my favorite dark green. I ate sushi and drank a diet coke and chewed through three pieces of See's candy, one of which was free. I called a friend in Santa Fe on my cell phone, walking up and down the mall, crying into this flat plastic rectangle. She was very consoling.

And then I went back to the hospital. It just didn't seem right to leave Pat alone there. I fed him dinner, walked him around the ward about a million times--pacing had become his new hobby--and got him into nurse's scrubs in lieu of pajamas. I helped him climb in bed,  stroked his hair and said the Lord's Prayer over him. It was all I could think of to say. That and "I love you." He didn't respond. Later on, he would say it back to me every night.

Afterwards, I drove to my cousin's house in the dark. She was summering at the Jersey Shore in a cottage that may not exist anymore as I write this. Her home is a lovely shell of aged fir or pine with windows that open out over the Rio Grande, the city lights beyond and the dark outline of the Sandia Mountains in the far blue distance. For the next three weeks, it would be my refuge and sanctuary, the place where I tried to learn that God is enough, that I am, that Pat is, carried down these hard shadowy steps in invisible loving arms.


Tuesday, May 15, 2012

Bad News and Somatic Therapy

This morning, Pat went out to breakfast with his caregiver, Sandra. Pancakes and bacon at his favorite breakfast place, The Pantry. While he was gone, I sat and cried. Our dog is sick and the doctors hadn't been able to figure out what was wrong, but while I was trying to enjoy a solitary breakfast, he started bleeding from the nose. Not profusely, but definitely not normal. When Pat and Sandra got back, he and I loaded Rex into the car--the big old dog actually jumped in by himself--and took off for the Santa Fe Emergency Veterinary Hospital. Kudos to them--I told the doctors that Pat has Alzheimer's and they were wonderful with him, very kind and gentle as they told us that Rex most likely has a rare neurological cancer.

There was the usual rundown about confirming the diagnosis with an MRI ($2500) and the possible benefit of radiation therapy (nearest available center is in Denver or Phoenix, cost would run into the several thousands). My mind first went to the "whatever it takes" place, not for me, but for Pat. Then I calmed down and remembered that we are dealing with a twelve year old dog who already has Addison's disease. Pat wept and wept, and so did I, because he's my dog, too. In the end, I told the doctor that we wouldn't be taking any heroic measures to treat Rex. I was afraid that Pat would push for treatment, but he didn't. In fact, the crying seemed to help him accept what is happening with his dear companion.

By the time we got home, Rex was perkier, eating toast treats from the table and wagging his tail. We relaxed the way you sometimes do during a crisis; not because it's over, but because there is a brief break in the unfolding drama. By four o'clock, Pat had forgotten that his dog has cancer. I had to explain it again and he had to be sad again. This is what I fear most of all--that I will continually have to remind him and that every time it will cause new grief. This time, though, he didn't cry, just got very quiet and sat still on the bed for a long time.

It's really hard for people with dementia to deal with uncertainty. Not that it's easy for anyone. But that feeling of being unmoored that's upsetting to all of us is catastrophic for someone whose mind doesn't process well. Ever since I told him ten days ago that I suspected that Rex is seriously ill, Pat has been less "here" than before, more given to night terrors and sudden terrifying loss of awareness of familiar surroundings. I worry that Rex's illness and death (probably in the next few weeks or months) will undo too many of the fragile synapses that hold Pat's brain together, plunging him into one of those rapid and steep down-steps that have marked his disease process.

I'm doing somatic therapy right now to keep myself together. Today, because of the emergency trip to the vet, I wasn't able to get Pat home before my session, so I dragged him along. The therapist is a wonderful earth-mothery French woman whose yoga practice has created a vast circle of calm around her. While Pat couldn't follow the relaxation directions she was giving us, he still was able to shift into a deeper state of peace. It made me wonder if there's some way to adapt such therapies to work with dementia patients. I will certainly take Pat with me to therapy again as Rex worsens and his decline in turn impacts Pat's dementia. I'm also going to try doing some of the breathing exercises with him, maybe get a relaxation tape to play to help him through the trauma. I'll let you know if it helps.

Monday, April 30, 2012

A Vision for Productive Living

I've been reading to my husband from a biography of Wallace Stegner, a writer we both enjoy. I also read articles on the environment and education to Pat, along with Wendall Berry's poetry and occasional inspirational pieces from the Bible and elswhere. We watch Masterpiece Theater, the News Hour, Bill Moyers and American Masters. We go to church and chat with our fellow congregants afterwards. We volunteer twice a week at the local Horse Shelter, grooming and socializing rescued horses. We walk up at the Audubon Center or along the Santa Fe River hike and bike path. We water the new turf our friend Albert laid in the back yard and talk about what will go in the gardens this year. We admire the outrageous cloud formations that blow up above the Jemez Mountains to the west in the windy spring afternoons.

Why do people think that individuals with dementia don't want to be full participants in life? Maybe some are not able, but I believe many are. Pat is one. The more he participates, the less he withdraws into that blank stare, the afternoon pacing, the hazy angry moods. Eight years of bad news have made me impatient. And this growing frustration with the Alzheimer's research and care establishment has energized me to look for alternatives to the despair that too many families drown in as they cope with the steady decline predicted and (surprise!) realized in the lives of their loved ones.

So I've elaborated a vision for what I'm calling the Center for Productive Living. It would not be a daycare center in any conventional sense of the term. Rather, it would be a place, a community, where individuals with Alzheimer's or other forms of dementia could come a few times a week and:
1. Do real work--building upkeep, gardening, animal care, writing, creating and crafting art to sell, etc.;
2. Learn new skills and brain health strategies;
3. Exercise their bodies and brains;
4. Stay current with the world by discussing the news over coffee or tea;
5. Soak up sunshine for mood improvement;
6. Grow a garden and sell and eat incredibly healthy organic foods;
7. Participate in the upkeep of the center's building;
8. Sing in a choral group;
9. Meet regularly with physical, occupational, speech and massage therapists
10. Attend lectures on the latest advancements in dementia and brain health research;
11. Meet with doctors on the cutting edge of treatment; and
12. Participate in clinical trials.

Most importantly, the CPL would be a community in which people with dementia and their family and friends would no longer feel outcast and alone, a place where they could actually thrive and contribute.

For the center's site, I'm envisioning a secure fenced property where participants, volunteers and staff would wear tags like workers do in high-security facilities. It would be on the outskirts of a mid-size city in a mild climate, away from high-traffic roadways on a few acres of open land. The building itself would be state-of-the-art green-built, with solar systems for electricity and warm water and passive systems for heating and cooling. It would be about the size of a large barn.

The interior space would include a big common room for doing art, dining, presenting lectures and choral performances and other larger group activities, a moderate sized commercial kitchen, a coffee shop with indoor and outdoor seating, where volunteers could read the paper aloud in the mornings and lead a discussion on the news, a quiet library with computers for those able to use them and couches for reading or resting, a massage and physical therapy room, a music and choral rehearsal room, an exam room for doctor's visits and a locker room where participants staff and volunteers could stash coats and materials for artworks or other work in progress and garden tools.

Outside, the center could include a large garden for growing vegetables year-round and smaller herb and flower gardens, oriented along a contained circular path that would enable participants to walk to and from the gardens and exercise without getting lost. There would be a smaller barn and enclosure for animal care therapy with gentle pets such as a couple of polite old horses and dogs that participants and volunteers could work with. Outdoor activity and exercise--stretching, yoga, tai chi, etc--would be an important part of the daily schedule of CPL

Staffing would include a small group of employees and a large corps of volunteers, who might be family caregivers who pool their time resources to help each other. For most of the activities, there might need to be a ratio of one volunteer for every two or three participants. The latter would be limited to 15 or so on any given day, which would mean a daily volunteer staff of around five people. The center would be open from 8 a.m. to 3 p.m., Monday through Friday, with special events on several Saturdays each year. Participants and their caregivers would be welcome to stay for the whole 5 hours, with lunch and snacks provided, or to drop in with a prior phone call to ensure that there are enough volunteers to go around. Volunteers, staff and participants would meet together regularly to discuss what is working and what needs to be added, developed or dropped from the regular round of work, exercise and activities.

Funding for the Center for Productive Living will have to involve public/private collaborations. I'm hopeful that the pending National Alzheimer's Plan will be funded by Congress soon, since the $55-$150 million that it would provide annually over the next few years could be a potent source for grant funding. Other federal programs on aging, NIH and other federal, state and local agencies could be grant sources as well.  There also are a number of private and corporate foundations, such as the California Endowment, Hoag Family Foundation, Howard Hughes Medical Institute and others, which might provide support, along with a bedrock group of generous regional and local donors. Because this is a new concept in Alzheimer's and dementia care, I believe that it will be of interest to research and clinical specialists in the field and could attract funds through collaborations with the Universities of California and other academic organizations that house brain research and dementia caregiving programs.

Society and even the medical establishment might say, Why bother? Well, here are a few reasons.
1. Social engagement lowers rates of depression, leads to dramatically better quality of life and shortens the period of time dementia patients will need to receive intensive caregiving.
2. As I mentioned in my last blog, one of the great problems of people with dementia that we largely ignore is the sense of uselessness. The CPL would enable individuals with early through late mid-stage dementia to do real work, to whatever degree they can, so that they don't feel so helpless and non-productive.
3. Outdoor activity raises people's levels of vitamin D, one of the key nutrients for brain health;
4. Growing plants and caring for animals are proven therapeutic strategies that improve mood, focus and sense of purpose.
4. Eating healthy organic foods helps to maintain robust physical health, including brain health.
5. Learning new tasks actually enhances brain plasticity and creates new brain cells.
6. Having an otherwise healthy community of dementia patients can provide researchers with a potential pool of clinical trial participants and a group to study in their own right to determine the impact of the interventions and therapies listed above.

If any readers of this blog have ideas to share regarding this vision for the Center for Productive Living, please contact me through this blog or my Facebook page. Let's start a conversation and see how quickly we can turn it into a real place with actual services. Thanks!

Tuesday, April 10, 2012

What People with Dementia Need

Several years ago, Pat told me that his fundamental philosophy regarding human nature is that we all need "to have something to do and someone to love." I think of that often now, because one of the great burdens of dementia for the person who has it is that they can't do what they once could. And as time goes by, they can't do much at all. I'm sure that a lot of the emotional and behavioral problems that doctors identify as part of brain degeneration are also due to this central frustration.

There is a belief about old people in our success-driven culture that fundamentally relegates them to the waste pile of non-productivity. Our notion of retirement is central to this belief--the idea that the old no longer seek to work, that they want to spend their days playing and resting, essentially doing nothing. I've met very few people over 65 who feel this way. Most women and men want to contribute to the world around them as long as they can. They just want to have control over their productivity for a change, to be able to choose with whom they interact and to focus on creativity and happiness rather than working to meet someone else's goals.

American society discounts the value of the work done by the elderly. The caregiving, the sharing of spiritual wisdom and life experience, the actual professional work that many pursue well into their nineties. Our stereotype is that old people are not worth much. I am fairly certain this belief is at the heart of the medical neglect of Alzheimer's disease. In the eight years since Pat began showing symptoms of the disease, there have been NO new medications released to treat dementia. Not one. Clinical trials are all over the map; there is no concerted effort, as there was with heart disease in the 1980s, AIDS in the '90s or breast cancer since 2000 to find a cure or protocols for symptom management.

Why? Because doctors, politicians, the media and the general public believe that dementia is a disease that afflicts people who are already non-productive. So, in essence, who cares? Grandma's getting old, she forgets things, she can't feed herself. Well, that's just how it goes, right?

Not right. Brain disease is no different from any other organ disease. It has a cause (or causes). It has a genesis and process. Some populations are more vulnerable, but that doesn't mean that they are the only ones afflicted or that they are less valuable and therefore less worthy of a concerted public health effort to find effective treatments.

Alzheimer's Disease is the only major killer of adults to have no effective medical treatments that prolong life and well being. Funding for research has been a joke, with researchers having to appeal through the Alzheimer's Association for individual donations to aid their work. Only recently, with the introduction of the National Alzheimer's Plan consequent to legislation in the 2010 Congress, has funding for research toward effective medical interventions been part of a proposed national budget. And yet, the cost of Alzheimer's and other dementias in terms of lost wages (of people with the disease and of their caregivers), lost tax payments, unpaid caregiving and burdens on the Medicare and Medicaid systems now stands at $210 billion annually. Yes, that's BILLION.

A quarter of a million Americans suffer from early-onset dementias of the kind which overturned Pat's life when he was in his mid-fifties. The vast majority of these people, both men and women, are in the workforce when they become symptomatic. They are parents of children in high school. They volunteer in civic organizations, they pay taxes, they own houses with mortgages. And then, in the space of a few years, they are unable to work, keep up their property, manage their money, guide their children.

Some of these dementias move at a horrifyingly fast clip--Pick's disease, for example, can take away all reasoning and speech in less than two years and kill in less than three. It typically targets people in their late forties to early sixties. As the Baby Boomers and Gen Xers age, I believe the incidence of early onset dementia will increase. Once thought to be primarily genetic, this set of diseases is now known to be much more complex. Smoking, alcohol and high exposure to heavy metals and other pollutants all may be contributing to higher numbers of mid-life adults developing memory problems that can lead to full-blown dementia.

These are a few of the facts that underlie what is not only a disease process but a profound social, financial and spiritual challenge for people who develop it, those who love them, the medical profession and public.  health policy makers. In my next blog, I will take a look at current practices in dementia caregiving and new directions that I believe must be pursued with urgency.

Wednesday, March 28, 2012

An Introduction

My husband, Patrick Gannon, was diagnosed with dementia in December 2004. We had been married for three and a half years. Everything I knew as normal stopped with that diagnosis, though I didn't know it at the time. He worked steadily for another year and sporadically, with me as carpenter's assistant, until the fall of 2008. Now, he listens to music, watches movies, whistles (a lot) and wishes he could take up router and level and go back to work. My heart breaks so often that I don't always notice. But a word from him, a sad look can reveal the rip and grief tumbles out like rocks in a landslide.

A few months after our wedding, I was reading an article about a woman whose husband developed frontal lobe dementia a few years into their marriage. A physical chill ran through me. I remembered this incident when Pat was sitting with the doctor, talking through what dementia meant for him, for us. 

Life is stranger than I ever imagined it could be.

The now normal:  Walking up in the night to find him pacing at the foot of our bed,muttering about gas lines running through the bedroom; shoehorning him into the car and fastening his seatbelt for him before I run around to the driver's side in the pelting rain or snow; helping him find his fly, or the toilet, or the bathroom, always looking out for unisex bathrooms, or sneaking him into the women's room, hastily explaining our situation to other astonished users; finding shoes in the fruit bowl, the broom wedged against the door, the dog's dish atop the front gate; explaining again and again the contents of a pile of photos I keep for him to rummage through; listening to James Taylor morning noon and night; watching old Fred Astaire movies every day; finding no time at all in 24 hours, even when I'm at work and he's with a caregiver, that I am not tuned into his need.

So much has been written about the traumas of caregiving for people with dementia. I don't want to go on and on about the awfulness or the quirkiness. What I want to do in this blog is to honor Pat and others like him, to write about the particular needs of caregiving spouses, especially those of us who are relatively young, to advocate for national reforms around this issue and to ponder the spiritual dimension of these diseases. For what I've found is that my husband is still very much the man I've loved since the day I met him. People with dementia do not become less than human, or unrecognizable to those who love them. They can still make new friends, enjoy good food, care about politics and the state of the world. I want everyone to understand that, to know that these are not "throw-away" human beings, but people longing, as we all do, to make sense of things, to be useful and to love and be loved. 

Hope you enjoy the entries to come. I welcome your feedback at any time.