This is not a question. Because after eight years of pushing back against dementia, I'm constantly surprised at what does remain--the memories, sense of self and humor that Pat still can muster. Tonight, he wanted to be in the kitchen with me. I'd usually push him out into the living area, telling him that the very small galley's not big enough for two, which it isn't. This evening, I let it be. He hovered over me while I mixed a batch of peanut butter cookies and heated baked beans and sausages to make the night seem warmer. We admired three perfect bell peppers together, and then admired them again in the salad, bright squares of red, yellow and green nesting among bronze lettuce leaves.
We lingered over dinner, looked at a photograph of Pat, his father, his son Chris. He knew the picture was taken in Cambria, recognized everyone and knew that it isn't how Chris looks now, that he was much younger in the photo. We talked a little about what was happening in Pat's life at that time.
We spoke of the music that was playing on the radio, a Schubert symphony, and agreed that neither of us had ever cared much for Schubert. We could both hear the bass viol. Pat used to play the bass and can always hear it, but I can't. After dinner, he walked around for a while. He wasn't agitated or unhappy. I checked in with him, we listened to a little more music together and he fell asleep to James Taylor singing "September Grass."
These are such ordinary things, not the stuff of important reflection, unless they are all you have to make a relationship. Then they become precious, vital. When I think of Pat going back into a nursing home so that I can work full time, these are the things I must weigh against my great need to have a normal life. If his experience this past fall is any gauge, he would again, and probably permanently, lose these simple abilities and memories. He would no longer be able to identify the past as past or talk about the present with anything but unhappiness and terror of the unidentifiable.
But here at home he is mostly himself. His sly comments and half-smiles, his offers to help me with things he can no longer do, certain ways of commenting on ordinary activities like getting dressed. Holding each other, resting my head on his shoulder. These moments are what I have of Pat now. I'm very reluctant to give them up. It's true that I can sometimes draw them out in a hospital setting, but there he must do without that sense of security, of himself, when I'm not available.
Am I taking too much credit for maintaining his well-being? I don't think so. This intimate knowledge of the other is one of the areas where spousal caregiving is very different from parent caregiving. Parents want to maintain their independence from their children--there is much that we don't know about our parents' inner lives and histories. Spouses are bound together by choice, by constant communion, by whatever that mysterious connection is that love and sex create. I call my husband back to himself in a way that I don't think I could call my mother back if she were living in dementia.
Today, I read through a Christmas letter I wrote ten years ago. It included pictures of our dogs who have both died in the intervening decade. I wrote of work, of Pat being so busy with contracting and carpentry jobs that he was having trouble scheduling everyone in, of the beautiful garden gate and courtyard door he made that year for clients, of house remodels, of trips to Big Sur and Pacific Grove, of bicycling around San Luis Obispo, of walking the dogs by the sea. None of that life remains. I'm glad to have the letter to prove it ever happened. It all seems now like a dream I had, years ago.
No. It's not true that none of those things remain. I wrote about a table that Pat was designing. It's sitting behind our couch right now. In a few minutes, I will go and lie down by my husband as I have for so many nights, so many years. I will kiss his cheek, tell him goodnight, tell him I love him and he will reply, if he's not soundly asleep. Just as we always have.
It's not the relationship we planned or the one we actually had for a few years. Sometimes he calls me by a name that is made up of the names of several women he's known. Sometimes, not too often, he asks who I am. But there are these other moments, these glances, these few words. And they do matter.
Tuesday, February 5, 2013
Tuesday, January 8, 2013
Indecision
We're in the deep midwinter now. Icy winds actually are making moan around the house today, just as in the carol. A bright unforgiving winter day, reminding me that my favorite thing about southern California is that right after Christmas, it's spring. I am not a fan of winter.
But writing about the seasons does help me work my way into these essays. Like the ancient Japanese haiku writers, who wrote about the weather almost every day. Weather places us, gives us an orientation toward our surroundings. When, as a caregiver, you are constantly inhabiting someone else's head and your own at the same time, it's good to have something like a snowstorm to remind you of the world outside.
My mother just visited. One of her few comments on my care for Pat was, "It's just so constant." Yes, it is constant. I am constantly responsible for making not only medical choices, but ALL the choices that keep my husband in health and safety and some degree of happiness. Like a single parent with no co-parent to consult, I must choose well for the person, in this case my spouse, who depends utterly on my wisdom for his life. And I'm also supposed to make good choices for my own.
Scary enough. Then add exhaustion and meager resources that have to cover a range of expenses including paid caregiving so that I get a few hours away each week. Mix in government agency red tape and un-returned phone calls to potential nursing homes and dementia resources. Beat thoroughly a myriad of Medicaid and insurance forms that seem to have directions written in a language I never learned, ordinary house cleaning, bill-paying, car repairs and grocery shopping. Stir together with job hunting, resume crafting and online applications and cover letters. Then fold in constant (at least every ten minutes) unintelligible yet urgent questions from my husband, and there it is: A recipe for profound confusion and indecision.
The problem is, I'm indecisive to begin with. I spend inordinate chunks of time weighing alternatives, writing checklists, and examining pros and cons. In the end, I almost always choose what my gut told me at the start would be the way to go. But the process is an attempt to mollify my fear. Fear that I will choose the wrong path, that it will lead to some unalterable error that will negatively impact not just my life, but Pat's as well.
This has, in fact, happened more than once, though almost always, the negative was at least balanced by positive experiences and life lessons. But to have to choose for someone else, especially to make choices that will have health or happiness, even life or death consequences, is paralyzing. My self-doubt is like the predator transfixing the gaze of the prey. My response, like any good prey, is to hold perfectly still. It's called procrastination. But it, too, has consequences.
Right now, the salient question is whether or not to put Pat back in the hospital for a few weeks and then transfer him directly to a nursing home in California. On the surface, it seems straight-forward. I am getting worn down; he is increasingly agitated. Answer: commit him for three weeks and get a nursing home lined up meantime. Simple. Only it's not simple. And for once, it's not just me making it complicated to forestall choosing.
First, getting him to the UNM psychiatric hospital from Santa Fe is a complex process, as I've written before. Then there are major issues involved in transferring someone from a hospital in one state to a nursing home in another. Second, I'll have to pack up the house, sell items, clean, paint and have repairs done so that it can be rented--and find a rental agency to manage it. Third, there's the actual drive (flying is out of the question--they wouldn't let him on the plane) from here to there. How do I manage a fairly robust man with severe dementia for two days in a car?
And of course, all of this is contingent on me finding a job. That actually has to come first, because where I find work determines where Pat will end up in long-term care. I have a dream, which I'm happy to share, that I'll somehow find a wonderful couple who can be live-in caregivers, and a great place with a separate living space for them. And a terrific job that can support home care--my current understanding is that MediCal won't separate assets for anything but institutional care.
But logistics aside, the greater issue is Pat's health and happiness, and mine. I've seen how he fares in hospitals and at least one nursing home. Granted the latter was the barrel's bottom, but there is something about Pat that can't thrive in institutional settings.
Other dementia caregivers must have this experience--I hope they know something that I don't. So many resources talk about mom just settling right in after a couple of weeks of pouting, or dad loving the attention from attractive young CNAs. And I did see people at Casa Real who seemed fairly content--they had friends, the nursing assistants spoiled them with attention, they enjoyed bingo and paper crafts. They were all older women.
Pat is still who he is, somewhere deep inside. That confined passive world doesn't suit him. He's like a wild free creature who wastes away when caged. So how can I do this to him? How can I put him in a an institution where he will wither? On the other hand, how can I go on with caregivers dropping out like tired pitchers, Pat getting more erratic and too many things like bill paying and income generation left undone?
The answer to both questions seems to be, "You can't."
So what is the third option? What is the divine surprise? I don't know. I hope it shows up very soon. Hope is the relevant word here. The belief that all comes right in the end. As Julian Norwich said, "All will be well, and all manner of thing will be well." Indecision wears down hope. And I need a full measure.
Outside our warm home, the wind has died down, the stars are sparkling. It is very cold this winter night.
/
But writing about the seasons does help me work my way into these essays. Like the ancient Japanese haiku writers, who wrote about the weather almost every day. Weather places us, gives us an orientation toward our surroundings. When, as a caregiver, you are constantly inhabiting someone else's head and your own at the same time, it's good to have something like a snowstorm to remind you of the world outside.
My mother just visited. One of her few comments on my care for Pat was, "It's just so constant." Yes, it is constant. I am constantly responsible for making not only medical choices, but ALL the choices that keep my husband in health and safety and some degree of happiness. Like a single parent with no co-parent to consult, I must choose well for the person, in this case my spouse, who depends utterly on my wisdom for his life. And I'm also supposed to make good choices for my own.
Scary enough. Then add exhaustion and meager resources that have to cover a range of expenses including paid caregiving so that I get a few hours away each week. Mix in government agency red tape and un-returned phone calls to potential nursing homes and dementia resources. Beat thoroughly a myriad of Medicaid and insurance forms that seem to have directions written in a language I never learned, ordinary house cleaning, bill-paying, car repairs and grocery shopping. Stir together with job hunting, resume crafting and online applications and cover letters. Then fold in constant (at least every ten minutes) unintelligible yet urgent questions from my husband, and there it is: A recipe for profound confusion and indecision.
The problem is, I'm indecisive to begin with. I spend inordinate chunks of time weighing alternatives, writing checklists, and examining pros and cons. In the end, I almost always choose what my gut told me at the start would be the way to go. But the process is an attempt to mollify my fear. Fear that I will choose the wrong path, that it will lead to some unalterable error that will negatively impact not just my life, but Pat's as well.
This has, in fact, happened more than once, though almost always, the negative was at least balanced by positive experiences and life lessons. But to have to choose for someone else, especially to make choices that will have health or happiness, even life or death consequences, is paralyzing. My self-doubt is like the predator transfixing the gaze of the prey. My response, like any good prey, is to hold perfectly still. It's called procrastination. But it, too, has consequences.
Right now, the salient question is whether or not to put Pat back in the hospital for a few weeks and then transfer him directly to a nursing home in California. On the surface, it seems straight-forward. I am getting worn down; he is increasingly agitated. Answer: commit him for three weeks and get a nursing home lined up meantime. Simple. Only it's not simple. And for once, it's not just me making it complicated to forestall choosing.
First, getting him to the UNM psychiatric hospital from Santa Fe is a complex process, as I've written before. Then there are major issues involved in transferring someone from a hospital in one state to a nursing home in another. Second, I'll have to pack up the house, sell items, clean, paint and have repairs done so that it can be rented--and find a rental agency to manage it. Third, there's the actual drive (flying is out of the question--they wouldn't let him on the plane) from here to there. How do I manage a fairly robust man with severe dementia for two days in a car?
And of course, all of this is contingent on me finding a job. That actually has to come first, because where I find work determines where Pat will end up in long-term care. I have a dream, which I'm happy to share, that I'll somehow find a wonderful couple who can be live-in caregivers, and a great place with a separate living space for them. And a terrific job that can support home care--my current understanding is that MediCal won't separate assets for anything but institutional care.
But logistics aside, the greater issue is Pat's health and happiness, and mine. I've seen how he fares in hospitals and at least one nursing home. Granted the latter was the barrel's bottom, but there is something about Pat that can't thrive in institutional settings.
Other dementia caregivers must have this experience--I hope they know something that I don't. So many resources talk about mom just settling right in after a couple of weeks of pouting, or dad loving the attention from attractive young CNAs. And I did see people at Casa Real who seemed fairly content--they had friends, the nursing assistants spoiled them with attention, they enjoyed bingo and paper crafts. They were all older women.
Pat is still who he is, somewhere deep inside. That confined passive world doesn't suit him. He's like a wild free creature who wastes away when caged. So how can I do this to him? How can I put him in a an institution where he will wither? On the other hand, how can I go on with caregivers dropping out like tired pitchers, Pat getting more erratic and too many things like bill paying and income generation left undone?
The answer to both questions seems to be, "You can't."
So what is the third option? What is the divine surprise? I don't know. I hope it shows up very soon. Hope is the relevant word here. The belief that all comes right in the end. As Julian Norwich said, "All will be well, and all manner of thing will be well." Indecision wears down hope. And I need a full measure.
Outside our warm home, the wind has died down, the stars are sparkling. It is very cold this winter night.
/
Tuesday, January 1, 2013
What does it mean to serve?
Stepping out of the world of normal employment for the past seven months has given me time to reflect on the pace, relationships and quality of the work I've done in the past, and my motivations in doing it. My goal in caring for Pat is to help him feel safe, happy and loved. Having never raised my own children, I don't think that this objective has ever been even a minor motif in my daily work before. It gives me pause. What matters more than serving another human being? Than using one's energy and talent to make another life or lives better?
I've never been very excited about the word "servant." My mind automatically goes to adjectives like servile and subservient and the vision of menial work done at very low wages for domineering egotistical employers. Recently, however, I've been thinking a lot about work as service, as an exchange between people who are in a relationship, however momentary or long-standing, one that has the potential to create mutual benefit and joy. It seems to me that work in the post-modern world too often lacks joy. The service in many "service industries" is hurried and harried, even bitter, rather than personal and fulfilling for all parties.
Work today seems to involve so many negative elements--catering to superiors (which is not the same as serving them), ruthlessly competing with co-workers, friction among laborers and between labor and management, self-promotion and aggrandizement, over-working to qualify for promotions and raises, sudden and inhumane firings, low and stagnant wages that do not reflect the true value of work done, fear of being outspoken or too inventive (especially in bureaucratic and "top-down" organizations), unwillingness to work hard, the "dumbing down" of workers who are not supported for participating in knowledge-building education. The top complains about profits and the rest complain about wages. But who talks about service and actually walks their talk?
When I was working, I sometimes tried to speed through my workday so that I could get back to my "real life." My home, my husband, our garden, our dogs, our community and my writing--these were the parts of living that really mattered, where I wanted to serve. Work was an interruption. I'm afraid this is true for a large percentage of the employed and it strikes me as very sad.
The contemporary world of work isn't usually integrated with the rest of life. Either it is an afterthought, or it is all consuming, pushing family, community, recreation and health to the margins. Some people love what they do so much that they don't mind this lopsided life. And perhaps they are called to it, given to a life of service through their business or their workplace. But I think a lot of us do not view work as service; rather, we see it as compulsion, to which we alternately give in or offer resistance. So how do we right-size our work life, make it more like the kind of service we do gladly for family and friends?
I've learned a great deal from caregiving for Pat about the wrong way to serve and hence, the wrong way to work. For several years, I've been his primary and at times only caregiver. The whole weight of his safety, happiness and well-being rested, I thought, on my shoulders. Several people told me I was his angel, but much of the time I didn't feel in the least angelic, scarcely even loving.
I burned out this summer, just when his condition worsened and he needed me most. I had lost my job, my sister had died a few months earlier, our dog died suddenly in June, we had only a few friends in Santa Fe. I ran out of internal resources. It was as if God had to drive me to this extremity to get me to stop trying to handle it all myself. As a friend kindly said, "You're doing a great job of trying to be Pat's Higher Power, but, you know, you're not."
Her words struck home. I had to sit down and examine how I'd been "serving" Pat and the harm it had done him and me. I'd been trying for months to get him to be more like my memory of Pat--relaxed, funny, accepting. Not so that he would be happier, though that's what I told myself, but so that I could escape the burden of caregiving and grief that weighed far more than I could carry.
The first thing I had to do was to turn Pat's life over completely to the care of God, who loves him more profoundly than I do. The same God who had given me to Pat so that he would have someone in his time of need, as he himself had been there for so many others in theirs. The same God who had given Pat to me so that I could experience being loved and accepted for exactly who I am.
Surrender is another term I don't like very much, but surrender is at the heart of this lesson in right and spiritual service. The key to serving this way is comradeship. You can only do it by seeking and accepting the help of others. By recognizing that collaboration is the one way that anything truly succeeds. We don't create the best outcomes through being selfless solitary heroines giving all or by being Howard Roarks in our own Randian universes. I was shocked to find that I have absorbed this cultural Lone Rangerism to such a degree that it actually kept me from picking up the phone and asking for help when I was desperate.
Coming out of isolation in my role as a caregiver and admitting that God has a plan for Pat that isn't entirely dependent on me has taught me profound lessons about work. First, it doesn't serve us or the organizations we work for to accept assignments that isolate us from colleagues. Second, it's okay not to know all the answers, not to be the smartest kid in the room. Third, service is humbling. It's supposed to be. If everyone in a workplace dedicates him- or herself to serving each other and letting go of frantic ego-driven activity, then service becomes exchange, collaboration, right livelihood.
Finally, I've learned that I work for God. Something I try to practice now is to sit quietly at the beginning of the day and ask for my marching orders. What steps are necessary this day? Who could help me take them? What serves my goal of taking the best care of Pat that I can, of being responsible but not isolated, and of widening the circle of good work in this world?
This is where I try to start now. Then I ask for help in doing the next right thing. I pick up the phone or send the email. And grace abounds.
Happy New Year, dear friends. Thanks for being part of the great circle of service and support.
I've never been very excited about the word "servant." My mind automatically goes to adjectives like servile and subservient and the vision of menial work done at very low wages for domineering egotistical employers. Recently, however, I've been thinking a lot about work as service, as an exchange between people who are in a relationship, however momentary or long-standing, one that has the potential to create mutual benefit and joy. It seems to me that work in the post-modern world too often lacks joy. The service in many "service industries" is hurried and harried, even bitter, rather than personal and fulfilling for all parties.
Work today seems to involve so many negative elements--catering to superiors (which is not the same as serving them), ruthlessly competing with co-workers, friction among laborers and between labor and management, self-promotion and aggrandizement, over-working to qualify for promotions and raises, sudden and inhumane firings, low and stagnant wages that do not reflect the true value of work done, fear of being outspoken or too inventive (especially in bureaucratic and "top-down" organizations), unwillingness to work hard, the "dumbing down" of workers who are not supported for participating in knowledge-building education. The top complains about profits and the rest complain about wages. But who talks about service and actually walks their talk?
When I was working, I sometimes tried to speed through my workday so that I could get back to my "real life." My home, my husband, our garden, our dogs, our community and my writing--these were the parts of living that really mattered, where I wanted to serve. Work was an interruption. I'm afraid this is true for a large percentage of the employed and it strikes me as very sad.
The contemporary world of work isn't usually integrated with the rest of life. Either it is an afterthought, or it is all consuming, pushing family, community, recreation and health to the margins. Some people love what they do so much that they don't mind this lopsided life. And perhaps they are called to it, given to a life of service through their business or their workplace. But I think a lot of us do not view work as service; rather, we see it as compulsion, to which we alternately give in or offer resistance. So how do we right-size our work life, make it more like the kind of service we do gladly for family and friends?
I've learned a great deal from caregiving for Pat about the wrong way to serve and hence, the wrong way to work. For several years, I've been his primary and at times only caregiver. The whole weight of his safety, happiness and well-being rested, I thought, on my shoulders. Several people told me I was his angel, but much of the time I didn't feel in the least angelic, scarcely even loving.
I burned out this summer, just when his condition worsened and he needed me most. I had lost my job, my sister had died a few months earlier, our dog died suddenly in June, we had only a few friends in Santa Fe. I ran out of internal resources. It was as if God had to drive me to this extremity to get me to stop trying to handle it all myself. As a friend kindly said, "You're doing a great job of trying to be Pat's Higher Power, but, you know, you're not."
Her words struck home. I had to sit down and examine how I'd been "serving" Pat and the harm it had done him and me. I'd been trying for months to get him to be more like my memory of Pat--relaxed, funny, accepting. Not so that he would be happier, though that's what I told myself, but so that I could escape the burden of caregiving and grief that weighed far more than I could carry.
The first thing I had to do was to turn Pat's life over completely to the care of God, who loves him more profoundly than I do. The same God who had given me to Pat so that he would have someone in his time of need, as he himself had been there for so many others in theirs. The same God who had given Pat to me so that I could experience being loved and accepted for exactly who I am.
Surrender is another term I don't like very much, but surrender is at the heart of this lesson in right and spiritual service. The key to serving this way is comradeship. You can only do it by seeking and accepting the help of others. By recognizing that collaboration is the one way that anything truly succeeds. We don't create the best outcomes through being selfless solitary heroines giving all or by being Howard Roarks in our own Randian universes. I was shocked to find that I have absorbed this cultural Lone Rangerism to such a degree that it actually kept me from picking up the phone and asking for help when I was desperate.
Coming out of isolation in my role as a caregiver and admitting that God has a plan for Pat that isn't entirely dependent on me has taught me profound lessons about work. First, it doesn't serve us or the organizations we work for to accept assignments that isolate us from colleagues. Second, it's okay not to know all the answers, not to be the smartest kid in the room. Third, service is humbling. It's supposed to be. If everyone in a workplace dedicates him- or herself to serving each other and letting go of frantic ego-driven activity, then service becomes exchange, collaboration, right livelihood.
Finally, I've learned that I work for God. Something I try to practice now is to sit quietly at the beginning of the day and ask for my marching orders. What steps are necessary this day? Who could help me take them? What serves my goal of taking the best care of Pat that I can, of being responsible but not isolated, and of widening the circle of good work in this world?
This is where I try to start now. Then I ask for help in doing the next right thing. I pick up the phone or send the email. And grace abounds.
Happy New Year, dear friends. Thanks for being part of the great circle of service and support.
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.
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
Thanksgiving
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.
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.
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.
TO BE CONTINUED
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