Explorers of the afterlife

imageI am a baby boomer. In tv terms that is someone born with 3 black and white channels. Fifty years later I have high def digital tv with more channels than I’ll ever use. It wasn’t until a few years ago that I got to watch a television show beginning to end through multiple seasons without missing an episode. The show was Six Feet Under. Each episode began with a death. Not your run of the mill end of a long life well lived kind of death. The kind of tragic, too soon, unfinished business kind of death. I was disturbed but intrigued from the very first episode. After all, the show really wasn’t about death. It was revealing the life of a human being, telling someone’s story. Through the dead person, we learned about the living, those left behind, those who loved, those who mattered. By experiencing the pain, suffering, and loss of a life, we cherished and respected the character more deeply. In the art world, it is called painting the lightest light against the darkest dark. It makes the greatest contrast and the subject stands out.
At the expense of appearing macabre, I would like to mention one of my favorite books. It happens to be about those who face death feeling most alive. It is called Explorers of the Infinite by Maria Coffey. The author interviews extreme athletes such as free divers, extreme skiers, mountaineers, and long distance pilots. They discuss how facing death makes them respect life. Tightrope walkers are a clear example of the deep focus and concentration of a single step and the consequences of a misstep. This respect for life and the attention given to each movement has become a spiritual awakening for these athletes. It may shed light on why some people are hard wired for risk taking.
All of this leads to why I became a blogger. My elderly mother began to need more help to perform her activities of daily living. I happen to be a nurse Which gives me some insight, but also gives me the flexibility in my schedule to help. When I tell friends what I am doing, I sometimes get the look of sympathy. I want to say, She’s not dead yet! In our society, taking care of someone is seen as a burden. It is a responsibility but also a privilege. It allows me to be intimately and personally involved in my parents’ lives. I have developed a relationship that is different from any other. As I face my parents’ mortality I am acutely aware of how precious life is. They are like the Himalayan mountaineers trying to make it to the mountaintop. I am the Sherpa. A cold frost may take their toes or take their lives, but I will tell the story of their courage and spirit of their last ascent.

Psychosis: a break in reality

Psychosis: a break in reality

I was in the car with my granddaughter when we passed a  man in one of those green foam Statue of Liberty costumes that people wear for advertising purposes. “That guy is seriously crazy” she said. “He runs around the parking lot and sometimes he has broken beer bottles around his feet.” Even under the green foam crown I could see the look of a dishevelled man. Here was the face of the down trodden. He was the poster child for mental illness.

The truth is mental illness has a great degree of variation. Psychosis, which is one aspect of mental illness, also has a great variance. In its simplest definition psychosis is a break from reality. When reality is so terrible taking a break from it is actually healthy. If a trauma is so bad that a rational mind ignores its existence for awhile the mind may have time to process events in smaller increments that can be managed. So there is a rational reason for evolution to protect our brains in this way. Psychosis can manifest in obviously unrealistic examples, the classic visit from aliens in spaceships or a marriage to Johnny Depp. Other examples of psychosis take simpler forms, like the neighbor stealing your rake or the police are tapping your phone. Sometimes it is difficult to determine if a statement is psychotic because much of what is said may actually be true. With the elderly, for instance, they sometimes fill in gaps of a story with statements that are plausible but just not true. A blogger may do this too, but after all, it’s my story. The main concern I have as a nurse is to determine the safety risk of having psychosis. If the altered thought process poses a risk to the safety of the patient or others it needs to be addressed quickly. If it causes a distress to the patient I would want to minimize that. If there is no risk of harm to a person’s wellbeing, there may be a wait and see period to allow it to diminish when the stressors are removed.

My mother has always been a savvy person. She was always cautious and a risk averse person. She was not the type to fall to anyone’s misguided persuasion. So I was not surprised when the phone calls started. “I just wanted to warn you that there is a scam going on. It’s been on the news.” My mother told me the details of Comcast employees, or those pretending to be, getting information from people to steal their money. It was the classic scam that we all have been reading about for the past few years. I told her that was nothing new and we moved to another topic. This type of phone call from my mother started to come more frequently and more details were added and the emotional distress more pronounced. It culminated with this next revelation. My parents came to visit me and I noticed my mother was very quiet. She looked preoccupied during the whole time and seemed to have trouble eating. Finally, I asked if she was ok.My father told me she made him go to the police station.” What for?” I asked, obviously concerned for their safety. “She wanted to report the scam to the police” he said. “But you haven’t been scammed, have you?” My mother said she hadn’t been sleeping. She stays awake worried for her adult children. She fears that the scammers will drain our bank accounts and take away our homes. I tried to use a reality based approach. I told my mother how technology works, how the banks have an interest in not letting this happen and how we know how much information to give out. This did not allay her fears. She was visibly distraught. I realized that she had a fixed delusion that could not be reasoned away. During my subsequent phone calls regarding this topic of scams I tried a different approach. I thanked my mother for the information, I told her I did everything she suggested, and I felt I secured myself against the scammers.she seemed relieved that I believed her and was no longer in jeopardy. This helped somewhat but I was still concerned about what was happening to her.

Over the next year, my mother talked about the scammers but with less paranoia. However, other stories began to develop. She once talked to my stepdaughter about a robbery she witnessed in front of a store. It sounded slightly plausible with a man reaching into a woman’s purse to steal her wallet. The implausible part was there was no yelling, no fighting back, no cops called, no running away. Not to mention my mother has terrible eyesight. I texted my step daughter from my sun porch and told her to not ask questions. Just let her finish and change the topic. Another topic involved a waitress who was also a hairdresser. My mother thought the waitress was trying to hide the fact that she was her former hairdresser. It wasn’t the same person but my mother was insistent. She said the waitress went by the name “Dottie” even though she was really “Dot” the hairdresser. It made no sense. She seemed completely mad, totally lost it.

Later that summer my mother ended up in the ER for a fall. The doctor ordered lab work He tells me she is fine from the fall but her digoxin level is toxic and they need to keep her inpatient. Sounds like bad news, right? Wrong!Some of the effects of digoxin toxicity are visual disturbances, fatigue,confusion, and delirium. Maybe this has been a factor in my mother’s crazy thought process. My mother was stabilized, sent to a rehab, then sent home with visiting nurses. It has been over 6 months since that hospital visit. My mother has some of the memory problems associated with mild dementia and I don’t expect that improve. Her thinking is much clearer and there has been no mention of scams. I can’t say for sure what caused that break and what cured it but I can say psychosis is not necessarily forever. Generally,the quicker it comes about, the more likely it can be treated. There are so many causes for a change in mental status. The key is to be vigilant and be hopeful. Scammers are out there. They are real. While they didn’t steal my mother’s bank account or take away my house, for a brief time they stole my mother’s mind. Just grateful to the doctor for getting it back for her.

When memory fails

My fiftieth birthday was a major turning point. I was anticipating an exciting trip to Hawaii with my spouse who just happened to share the same birthday as me. We purposely planned it the week after our birthday so we could be close to family to celebrate that week. On the day of my birthday I received the usual facebook messages, texts, singing call from my sister, and the niceties of knowing I am not forgotten. I checked my phone several times throughout the day. I became concerned that I hadn’t heard from my parents or more specifically from my mother. My mother was the one who made the calls and kept the social calendar. My father followed along and generally added ” I concur” to my mother’s monologues. So as evening fell and no call from my parents, I called my mother. “Hi, Ma. Thought you’d like to wish me a happy birthday.” I was sure she would be embarrassed since this had never happened before. My mother is like one of those geniuses who can tell you what you had for lunch 35 years ago on a Wednesday. Instead she said, “what?…Oh. Well ok, happy birthday.” If I didn’t know better I would have thought I woke my mother from a crack house hangover. But my mother didn’t drink or do drugs. She didn’t suffer from depression. She wasn’t shy or introverted. I felt sad and a little concerned. called my sister and told her what happened. She was equally surprised by my mother’s reaction. I figured I’d give it a couple of days and talk to my mother again. Still just apathy.
Just to put this pivotal moment in perspective I asked myself what was I expecting? As a child in a blue collar neighborhood in a catholic family a birthday was a big deal. It was the one day that I got to pick out the supper menu. My mother was a pretty good cook when it came to comfort foods. I also got to request the kind of cake I wanted. Chocolate cake with shaved chocolate in a different color each year from Homelyke bakery or in ice cream cake from Carvel when I was older. I also asked for a sweater on most birthdays since Fall in New England can be cool. My favorite one was the maroon cardigan that zipped up. But this particular year I got nothing. At fifty years old, I could get over that. What I couldn’t get over is not so much that my mother forgot my birthday, it’s that she didn’t care. My mother was no longer the caring, loving, overly attentive, micromanaging, needs to know everything mother that I learned to love and sometimes got frustrated with. My mother was slipping into old age and maybe the dreaded world of dementia. I am a psychiatric nurse and didn’t see that coming!
So that was the beginning,or at least the beginning as I remember it. The ending however is not as dire as you would anticipate. The course of dementia is not a neat downward graph line, nor is it a spiral. It’s more of a wavelike pattern with peaks and valleys. Many factors play a role in keeping a person clear in thought. Sleep, good nutrition, structure,medication adjustments, and a support system of family and professionals help to keep the elderly functioning to their highest level. So although my mother generally forgets what month it is, she can tell me Obama is the president and my brother is coming to visit, and my sister will be bringing her dog when she stays over. With reminders my mother can be the loving mother she has always been. Though she has her ups and downs which lead her to the hospital and visits to the rehab she is able to continue to live at home with my father. On my most recent birthday(54) my mother was in a rehab. When I arrived to see her that day,I was surprised to have a cake, a card,a birthday song, and two of the best parents ever. Not sure if my mother will remember it but I always will.

Come around when you can:not all family members can give equally and that’s ok

I was taking my usual drive to see my elderly parents. Thought I’d give them a heads up. That’s when Siri and I got into it. Call Dad, I said plainly. Calling Bob, said Siri. F**k off Siri. Not today. I was reaching my limit on patience. The voice command had recently had me calling all the wrong people. It was not a big deal , but for caretakers trying to balance their own lives and the health and safety of others, it is the little things, the last straws they drive us batty. So that is how the call from my brother came about. I saw you called the other day. He is  in his 60’s, relatively fit and prides himself on being youthful. With technology, he is a dinosaur, wants nothing with it. I explain the call, apologize for the confusion. So how is she, he asks. He lives 3 miles away but never visits. Sees my mother once or twice a year. She’s okay. He sounds relieved. I just don’t want people pressuring me to show up, creating a crisis, saying she is dying and I need to go now. I know what he is referring to. My mother had recently been hospitalized and my sister mobilized some family members to visit. She understands my mother is failing and doesn’t want anyone to miss their chance to say goodbye. My mother lives with a serious cardiac condition and all the failings that many elderly live with. Her life is now hospital visits, rehabs, doctors visits, and all the home healthcare ever created. She has all the bells and whistles to make her apartment more accessible and safe. My brother attempts to explain his absence as if it’s something new. He has bipolar illness and has always had trouble putting others’ needs before his. He tells me he is anxious lately. He notices changes in his body. He looks different in the mirror. He has lost friends and acquaintances. He feels old. I don’t expect to live as long as Ma and dad, he says with sadness in his voice. He tells me he prays for my mother. His voice gets pressured and a bit louder. He is defending himself. I say to him, come when you can, don’t worry. We all need to do what we are good at. I’m a nurse. I am good at taking care of Ma. You are good at praying for her. I hear a sigh of relief. It was nice seeing you at the hospital, she enjoyed that, I tell him. He seems calm, no longer defensive. We are just 2 siblings discussing our mother’s failing health and our own mortality. I’ll let you go, I know you’re at work he says quietly. Love you, Bob. Come around when you can.

Forgiveness, A mother/daughter saga

Breathe in. Pause. Breathe out. Breath rises. Pause.Breath falls. I lie on my yoga mat nearing the end of class. This is the part where we relax and meditate. The instructor encourages us to set an intention that we can carry with us throughout the day. “Forgive my mother” my subconscious voice says. Wow, I consciously think to myself. That’s a loaded intention. Don’t get me wrong. My mother is wonderful and we have a nice relationship. But after all, don’t all women have little resentments towards their mothers. Freud said it and so has everyone since. It’s the theme of chick flicks and books. It’s on daytime talk shows. My friends, family, and coworkers all express it. Where is the anger coming from? Why the holding on? I have worked it out the best I can. Sure, I resented the inordinate amount of time she spent with my older brother in our childhood. He dominated her life. It was only later he was diagnosed with mental health issues. But it did still bug me that our conversations still revolved around how his day was going. The other big thorn in my side was her lack of total acceptance that I was gay, that somehow she should be commended for being tolerant. I wanted acceptance not tolerance. We had made great strides in this area but every time she supported the Catholic Church’s stance I would cringe. I felt like I had moved on with these issues but they were always lurking in my memory in a way that made subsequent minor infractions crumble the foundation of our relationship.

Step one in forgiveness. I decided to step back from the mother daughter relationship and to see my mother through an outsider’s eyes. The outsider was the professional me. After all, I am a psychiatric nurse and have some experience in talking about feelings. I looked at my mother without me. I saw a woman who was brought up in an era where grown women called their younger supervisors “mister”. An education was an opportunity to procure a husband. A time when Lucy and Ethel were the tv role models. My mother was newly married when her own mother died at the age of 54. It was a terrible blow and she missed her throughout her life. My mother’s first born required a lot of attention because no matter how she tried he never seemed to get enough of her. My mother watched her kids leave the Church, dabble with drugs and alcohol, narrowly escape VietNam, struggle to get financial aid to go to college, and basically live lives she had not chosen for them. I saw a woman who prayed a lot, cried a lot, pleaded for peace and quiet. I saw a woman who cooked, did laundry, transported children,attended events while her husband worked, pinched pennies, made sacrifices, and received no glory. I forgive you, Ma. I see life was not easy and you did your best. I forgive you.

Step two in forgiveness. Now was the time for turning tables. I started thinking about my part in this relationship. I thought of my early years spent attached to my mother. “This is my baby” she would say no matter what my age. She would smile and wait for my reaction. I was a good kid but like all good kids I made my own course. It was not what my mother dreamed of. I made my share of foolish decisions. So how could I mend this? I thought about the parable where Jesus approaches those who are throwing stones. He was about to write my sins in the sand. I knew what the answer was. I needed to ask forgiveness for my transgressions.

Fast forward to 2016. I am helping my mother get dressed for bed. She requires a lot of help and my father needs a team of people to keep her home. I visit regularly and help in whatever way I can. I hold her steady so she doesn’t fall backwards as she brushes her teeth. She struggles to position her walker in the tight bathroom. She moves slowly to her seat in the living room. Thanks for helping me she says. No problem, Ma. You’re worth it! Forgive me my sins, I say to myself. And I know she already has.

Compassionate care giving

After an hour commute, I arrive at the parking lot across from the brick building. A hundred years ago the mill produced useful commodities. Today it houses the elderly and the physically challenged. It’s my third time here this week. I make my way down the hall to the last door on the left. I knock and am greeted by two cheerful voices. I let myself in. They are a couple married nearly 64 years. They sit in their respective seats. He is on the couch. She is slumped over in her powerlift chair. I do a few quick nursing assessments I learned 25 years ago. How’s your appetite? Have you had enough fluids? Sleeping ok? I do a visual assessment of all extremities looking for the edema that has plagued her with her recent bout of congestive heart failure. I go to the kitchen to fix them a light snack. I check the bedroom, arrange the comforter on the medical bed, and pick up wrappers from the hard candies that she consumes. I gather laundry. Throw away used tissues. I offer to walk her to the bathroom. It takes the count of three and a prayer to get her moving. Once up I give the usual reminders. Head up. Back straight. Look forward. She uses the walker with difficulty but manages to reach her destination. As I assist with washing, putting on pajamas, brushing teeth we engage in small talk.

We get back to the living room. How are you feeling I ask. That is a loaded question. She has lost half her siblings even though she is the eldest. She has lost some cognition. Her eye sight is impaired. She cannot walk without assistance. I feel great she tells me. I am happy that she is having a good day. Other days are not so good. Recently she has responded to the same question much differently. I don’t know how much longer I can go on like this.  I want to comfort her. I want to offer hope for the future but I know the cycles of her disease process. I want to maintain her trust so I vow to myself to always tell her the truth.

My mind shifts to Maslow’s hierarchy of needs. Physical needs:met. Safety: check. Sense of belonging: her marriage says it all. Self esteem: we review her progress and she seems pleased with herself. Self actualization: the point where a person finds a meaning to their life. She has always been a religious person. Went to church every week and then every day when she retired. Her bedroom is a devotion to Mother Mary. She prayed to her in every hour of need. There it is! Motherhood. That was always where she found meaning in her life. That is the universe in which she finds meaning and value and fulfillment. You have obviously been a great wife I tell her. And you are certainly a wonderful mother. At this she smiles but says nothing.

I gather my things. I have two 12 hour shifts ahead of me. I bend down to give her a hug. I kiss her on the cheek. I love you,Ma. I go to my father to say goodbye and head to the door. Goodnight. Thanks for coming. God bless. I close the door. Tears come to my eyes. A smile comes to my face. I am already blessed I say silently to myself.