Life tends to get in the way of my vision for what comes next. Spring 2011, I can remember sensing something's coming, just down the road, around the bend. I couldn't see it. Didn't know what it was. I just knew it was coming. Being positive, by nature, I, of course, thought that something would be good. It would capture my attention and wing me on to my next adventure. 


Mom had settled into my home, for the most part. I basically put-on-hold teaching, as my stress level could only "handle" having Mom in the home. We had good days and some not so good days, and some days, just not worth mentioning at all. I'd usually call one of my sisters or text my brothers and say, you'll never guess what Mom came up with this morning. But, all in all, life in retrospect, seemed to be running fairly smooth, as smooth as life with someone that has Alzheimer's can.


Then August came around and my world turned upside down. That something DID capture my attention. 


Within the course of a month, I was not only diagnosed with ovarian cancer, but also with pancreatic cancer. Two separate, unrelated cancers. My ovarian (notice how I've owned it...its mine, not someone else's...what does that say about me, I wonder??) cancer seemed to be well behaved. It was borderline cancer, although as my medical oncologist (acquired when I had my second diagnosis) said, cancer is cancer. My GYN oncologist, after removing all my female organs and my appendix, said it would only require a careful scrutiny. No need for chemo or radiation. YAY!! I was elated and ready to get on with my life again. 

I had one concern though. Before surgery, I began to notice a creeping yellowness to my skin and eyes and some other symptoms. By the time my surgeon was ready to release me and remove my staples three weeks post-op, I had dragon eyes, you know those stories where the dragon has piercing, devilishly yellow eyes! My GYN finally looked up (yes, I meant it) and said, "You're yellow!" A blood test confirmed a dangerously elevated bilirubin and elevated liver enzymes. He told me, "get to the hospital, NOW! These are liver failure levels." 


A scan showed a blockage in my pancreas, and after biopsies etc, confirmed another nightmare, adeno pancreatic cancer. A small mass blocked my bile duct, causing bile to spew into my system. The jaundice alerted the doctors of the mass, otherwise, it could have grown undetected until too late for them to operate. All concerned called it fortuitous. My medical oncologist explained how they stage cancers, what they look for in pancreatic cancer in order to work toward a cure. It looked like they found mine before it became incurable.


I couldn't read. I couldn't even pray. I remember sitting up on the edge of my bed in the hospital after getting all this information, alone, softly singing to myself the song I wrote about in another blog, Somebody's Praying: "mighty hands are guiding me to protect me from what I can't see, O Lord, I believe....."  I was in shock, overwhelmed, yet being held by an invisible gracious Spirit of love (God is love). I don't know what I would do without my family, my children, my friends, and my priests. All have gathered around and have been supporting me, and I'm so grateful for their love. 


In mid-October, another surgeon performed a Whipple. He removed a portion of my pancreas, a portion of my duodenum, a portion of a bile duct, my gall bladder, and re-arranged my innards (technically a duodenalpancreadectomy, whipple resection). I wonder what's left?? All professionals concerned informed me, I recovered quickly from both, particularly the Whipple surgery. I have nothing to compare it to, so I'll take their word. 


All I know is, I went from having one alternative medicine doctor to having not one, but four oncologists. From only taking supplements (except for my thyroid medicine) to needing chemo therapy and radiation, in  the course of just a few months time. This cancer was not as well behaved. It is Stage III, with close borders. My oncologists still think, "we can cure this." I'm grateful for their attention and compassion. 

I know that no one leaves this world alive, but would like a bit longer to work on my bucket list, see my grand-children grow up, and accompany my children to mid-life, at least. According to my surgeon, if I make it two years, that will be great! Five years, they'll talk cure. I like what a friend said the other day, "When you wake up the next day after diagnosis, you're a cancer survivor." I'm not ready to say good-bye, not yet. Life and death are not in my hands, though. Control over our circumstances is an illusion. We just don't know what lies around the bend. 


My brothers and sisters have come together and decided I need "to laser focus" on my own health and are in the process of moving Mom to assisted living. She is not happy about it. No one is.



I've been re-watching The Lord of the Rings and identified with Frodo. "I wish the ring had never come to me. I wish none of this had happened." 
Gandalf assures him, "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us."


So, as I go through this transition time, time between now and whenever my Lord calls me home, as I struggle with side effects of chemo and radiation, I'm living now, but also planning for the time I have left (a good place to be), and hopefully, finishing the bucket list. 

The Choices We Make As Women, pt 2

 © Marie-Lan Nguyen / Wikimedia Commons

In an earlier blog, The Choices We Make As Women, admitting my private prejudice, I wrote about my evolving thoughts on the subject of women with children, who work outside the home. Just to clarify, I've always believed that a woman who works outside the home should receive the same pay as her male counterpart. Pay should always be based on job performance and competence, not sex, religion, ethnicity, or even a person's size, as we're being told today (over-weight people earn less). A manager's prejudice or preferences shouldn't enter into the equation in a perfect world. Unfortunately, we don't live in a perfect world.

For me, the unfairness of the job market quickly manifested itself soon after I entered it. As a young woman, I worked for a wig warehouse and trained a young man who eventually took my place. When I discovered I was pregnant and informed my boss I was leaving (single, I moved briefly to Colorado, long story), he thought it was because I learned they were paying my soon-to-be-replacement more money, after-all, he was about to get married and would be supporting a family.

In retrospect, I believe they were afraid I would report them for unfair labor practices and were trying to smooth relations. I had too much on my mind at the time to concern myself with what I was hearing. I was obviously qualified to train him for the job, but I was worth less to them, because I wasn't the head of a family (little did they know). It's amazing, after 40 years, I still hear comments made along the same lines and despite gains in a number of higher paying job markets, women's earnings, according to a recent Forbes magazine article, has stalled at 80% of their male counterparts. It boggles my mind and infuriates me on behalf of my daughter, grand daughters, and other female family members. [Access Forbes article here]

My daughter, Jennifer

Though Mom belabors the point about women and work, my grandmothers are mentioned repeatedly in conversations. Mom doesn't make the connection that despite the fact they would have loved to stay home and continue their domestic lives, and despite their limited marketable skills, finding themselves widowed, each worked outside the home, albeit for a relatively short period of time.

Grandma Fried

In another blog, I mentioned my Grandma Fried's prayers and the comfort she gave me. [Somebody's Praying] My mother's mother, Grandma Fried lived with us when I was a little girl until just before she died of a heart attack. Having a Grandma in the home feels natural to me; it feels like home. It's one of the reasons taking care of an elderly couple when I arrived in Tennessee seemed like a natural fit, and opening my home to Mom was always on the agenda, should she need a place and I had the means.

Grandma Fried, according to Mom, was a staunch Methodist. She didn't dance, or drink alcohol, and attended Church three times on Sundays. She married a card playing Grand Mason much to her parents' chagrin, I surmise. Grandma Fried attended well to her household of three daughters and one son during the day and always bathed and changed from her house-dress into something more presentable when Grandpa Fried arrived home from work in the evening. She met him at the door with a kiss.

Grandpa Fried

Grandpa ate supper with his suit coat and tie on and the family sat at the dining room table. The children didn't speak unless they were acknowledged, as the adults conversed about their day (for better or worse, times have changed). Grandpa was the head of the house. Grandma ordered groceries from the local grocer and Grandpa paid the bill monthly. Grandma didn't know how to write a check, didn't know anything about insurance, or the business end of running a household. Grandpa took care of business issues and Grandma the home, until he died in 1939 at age 59, leaving Grandma and Mom feeling lost.

Grandma and Mom (14 years old) moved in with relatives and were carted off to California, for a few years, before coming back to Nebraska where my mom met my Dad [Driving Ms Nancy]. Mom felt Grandma's pain, having to rely on relatives, and determined she would never place herself in that predicament. It's part of the reason she rages so, at times, about her current status. It's really a fantasy, however. We all rely on one another, certainly some times more then others, but we are interdependent creatures, living lives of perceived independence.

Nancy and Bob, November 22, 1945

They were still living with relatives when Nancy Jane Fried, of Swedish, French, Holland Dutch descent, married Robert John Duros (both 20 years-old), son of a Greek immigrant and a Bohemian transplant. Grandma depended on relatives for a place to live, which is why she spent part of my childhood living with us. She finally found a job working at Goodwill Industries, and Mom recalls the day her mother came home thrilled someone hired her. Her only options at the time were non-skilled labor and living with relatives in order to help provide for herself and my mom. At the time, only about 11% of the workforce were women.

Grandma Duros

Grandma Duros, Albina Hudrlik Holik Duros, lived to be 97 years-of-age. Mom is fascinated with Dad's mother and comments on the fact, in many conversations, that she lived so long. Grandma Duros was a little Bohemian woman, who moved to Omaha, Nebraska from Corsicana. I don't know a lot about her life in Texas. My imagination certainly has come up with several scenarios (and one may find its way into that novel I'll write before my demise), but in the end, we don't know much about her life pre-Omaha. According to Mom, she experienced such a hard life, giving birth to all ten of her children at home. My Uncle Jim wrote that she kept her children well fed, at times using a coal burning stove, and clean, though for years they had only well water and no sewers. She never owned much in the way of material goods, but what amazes Mom is that Grandma Duros was so grateful with so little. Maybe that's one of the secrets to her longevity: thankfulness.

She traveled with three small children under 6 years-old, with her mother to Omaha after her husband died. She couldn't have known what was ahead of her, she only knew she had to find work. Her sister lived in Omaha, which probably helped them make the decision to move. Upon arrival she hired on at a boarding house, and helped support her three children using her skills as a cook. At that time, even fewer women were in the workforce, about 5%. According to family legend, that's where my Grandpa met her. At the turn of the century, in South Omaha, Union Pacific Railroad and the Stockyards hired groups of Greek immigrants just off the boats, to repair the rail lines and work in the packing plants. Grandpa worked as a mail handler for UP, after working briefly for Cudahy Packing Plant.

Grandma was born in the US, but Grandpa jumped ship before reaching New York harbor and lived here illegally until about 1940, when a number of illegal immigrants were given the opportunity to become US citizens. It must have been frightening for them, to live not knowing if they might be separated and he, deported. Family legend states my Greek Orthodox Grandpa proclaimed in his thick accent when he met her, "She can cook, I'm going to marry her." Grandma said she didn't love George when she met him, but grew to love him, because of his care for all the children and his devotion to her.

We lived in Grandma and Grandpa's house (they lived in a small building behind the house, a garage Grandpa rebuilt into an apartment) when I was between 2-4 years old. I still remember Grandma calling me to the little house to hand me homemade bread, fresh from the oven with clumps of fresh butter on top. Oh, how I loved homemade bread, something I miss on my gluten free diet. Gluten free just does not taste the same. In the early afternoons, I'd sit beside Grandma as she shelled peas, or broke green beans for the day's meal or to can for later use. It was shaded and cool on the wooden bench beside the little shingled house out back. I don't remember saying much, I was quiet, I think, but I do remember the feeling of being close to such an earthy woman and feeling important to her, a memory close to my heart. A railroad track lay beyond the garden and the sound of a train whistle today, produces a sense of longing. I do understand my mother's feelings of longing for home.  

Basically domestic women, thrust through circumstances and no choice of their own, into the strange world of working outside the home, when there were few options for women in the work field, both women did the best they could with limited skills. Their lives left an indelible mark on my own.

To be continued....

Taking Care of Me

When Mom moved in with me in 2008, I was finishing my Master's thesis and lecturing at the University. Getting adjusted to Mom being here, teaching, and the pressure of getting my thesis committee ready, pushed all thoughts about my own health issues to the back-burner. I'd been telling myself, since I moved to Nebraska from Tennessee in 2002, I'd work on my health, right after I finished the semester. Then it was the next semester, and then the next, and before I knew it, 6 years had passed and I was still procrastinating. I'm good at it, procrastinating that is, especially when it comes to my own health.

As Mom's cognitive abilities started declining, I read more and more about caring for loved ones with Alzheimer's. I needed help to cope with the strangeness of it all. One of the things I read repeatedly was that often a caregivers' health will decline because of the stress of caring for someone with dementia. Reality hit me. If I didn't do something, I would be in trouble in a few short years. The anticipation of caring for Mom, however long that might be and difficult, focused a floodlight on my own health. I grew more aware of, instead of dismissing, how I was feeling.

I noticed my recall was not as quick, answers I KNEW in class were not coming to mind, a general fogginess set in, I couldn't concentrate, and I was tired all the time. I laid around the house, took naps when I wasn't at school, and most days woke up calculating when I'd be able to return to a prone position. As a matter of fact, if I wasn't in the lounge chair grading papers, I was lying on the bed or on the couch. My weight held steady at FAT, neither up nor down, no matter how little I ate. I generally felt lousy, but my biggest complaint was an overall feeling of inflammation. I had joint pain, plus this generalized l inflamed feeling that sometimes sent me to bed wondering if I'd be able to continue. I vacillated between not taking anything and consuming several over-the-counter pain relievers to get through my day. I felt stressed and maxed out just getting up off the couch, let alone dealing with Mom's ups and downs.

Typically, over the past decades, I've focused on my weight, reducing it through diet and exercise as a means to feel better. Exercise always helped in the past, but how do you exercise when you hurt to move, and you have trouble just getting through the day? My weight is a symptom of my health issues. Losing weight would improve my health, but since it is not the sole issue, to focus only on losing weight was not going to improve my overall health and well-being. I knew this instinctively. I needed to concentrate on wellness in a holistic way, physical, emotional, spiritual. No one was going to take care of me, but me.

Physical:
I found a doctor who listened to me. Dr. Patricia Ryan [http://www.centerforconscioushealth.com/] sent me forms to fill out before our visit. She took a lengthy history, including asking for info about my health issues for each decade of my life (try to remember what sort of illnesses etc. you experienced when you were 2 years old), a lengthy current symptom survey, asked for info about my lifestyle (travel, etc). She queried me about my circumstances, even had me list various products I use on my hair, on my body, in the house, all by product name, just to name some.

In a ninety-minute visit we discussed what my possible issues were and she designed a plan to help me deal with the inflammation short of any tests. She listed several tests that would help us identify my specific issues and I decided to partner with her to work on what she found. Osteoarthritis (moderate to severe in right hip), low thyroid, heavy metal toxicity, hormone imbalance, food sensitivities (soy, dairy, eggs, gluten), a Lyme family bacteria hiding in my body (DNA test), and some bad bacteria in my gut (I've traveled a lot), added to a general systemic inflammation and contributed to the fatigue and pain I was experiencing. It all encouraged my body to hold onto fat, which ALSO increases inflammation.
Without boring you with the minute details, among the changes she suggested:

• eliminating offending foods (along with general common sense dietary tips, which I had already implemented...seeking to eliminate white sugar, flour, add nuts, seeds, good fats, plenty of organic fruits and veggies, drink pure water)
• adding homemade chicken stock (it really is good for what ails you)
• supplements to support my thyroid, liver, adrenals, and digestive tract
• hormone support
• IV Chelation therapy to reduce the toxic metal load in my body
• basic detox minerals and glutithione (powerful antioxidant) to help my body detox                     

Gradually, beginning slowly so as not to overwhelm, over a year-and-a-half, I made changes. The result is the systemic inflammation is decreasing (so far by half), my thyroid numbers are good, blood pressure good, my body's toxic load is lessening, I have more energy, and am experiencing an overall feeling of well-being. Recall is quicker and concentration better. The weight is slowly coming off. I'm exercising, not vigorously but steadily, and include deep breathing and yoga stretches. Plus, I periodically have a massage, not only for detox, but also for stress relief. The day I turned on the music and FELT like dancing, tears of pure joy flowed.

It all helps me cope with mom's erratic behavior and accusations (paranoia), but the physical is only one aspect of wellness. There is also the need for emotional support.

Emotional
Mom and I are linked in this emotional journey. No one fully understands what it's like to live with someone who has dementia. Others in the same boat understand to a degree, but each situation is unique. Mom is very sensitive to moods, attitudes, tones of voice, expressions. Keeping my emotions and attitudes in check can go a long way to helping her cope with her own erratic mood swings, although there is no fool-proof way to keep her mind from building strange scenarios.

I'm human. The tension of not knowing what kind of mood my mom will be in any given moment, can build up in me. Her accusations hurt. The strange stories she develops are maddeningly confusing, and jolt when she confronts me with them as if I should know something about them. So, I take breathers. Mom is not to the point where she can't be left alone for a couple of hours. When I need to get away, I go to a movie, go to a restaurant and sit sipping coffee, reading something enjoyable. I go outside, sit in the sunshine for at least 10 minutes, then move to the shade for another 30 minutes to an hour, with my bare feet on the ground, weather permitting, just enjoying the feel of the earth and sun. Don't laugh until you try it. It's amazing how calming it can be. For more information see:  http://www.earthinginstitute.net/index.php/book

I listen to the birds, read a book, or I close my eyes and just breath. The grand-children stopping by or spending the night, can also add a welcome relief from the negativity that generally permeates conversations with Mom. These are things I can do that help my emotional equilibrium. I also schedule myself mini-vacations to just get away from it all. I'm fortunate I do have family that helps out as they are able. They can't be with mom to the extent I am. Each is dealing with this disease in their own way and to a greater or lesser degree do what they can.

To socialize, Facebook, Twitter, daily connecting with people even if only in 140 words or short bursts, helps me not feel alone. I decided I need to get out and meet people (moving here, school, now mom, I haven't taken the time to build many friendships here in Omaha), so I signed up for a Book Club Meet-up. A Twitter friend told me, after listening to me vent about not having many outside activities apart from Mom, about Meet-ups, i.e. groups for people of like interests that one can join and participate in. I haven't been to one yet, but I'm looking forward to the July meet-up. Just to meet with others and discuss something other then dementia sounds like a good idea to me.
http://www.meetup.com/cities/us/ne/omaha/

I'm sure as Mom's disease progresses I'll have to hire someone to come sit with her so I can get out. I've visited with Home Instead, a service that will provide such care and alerted them that I may need them. I don't look forward to those days, but am committed to taking care of me so I can take care of her. That will be high on my list of needs when the day comes. For more information about Home Instead see: http://www.homeinstead.com/Pages/home.aspx

Spiritual
I'm listing this last, but each of these needs overlap and are intertwined. It is not step one, two, then three. The spiritual enlivens and directs all that I do, all that I am. I have my own faith tradition and read and study to inform my faith. I pray, meditate, and vent.

For years, I kept journals, filled mainly with prayer requests (and answers), thanksgiving, and at times worries. When the "what ifs" descended upon me in the middle of the night, I'd get up, turn on the light, and write them in my journal. Then I read each and crossed out all those what ifs that might never happen (usually the whole list), and go back to sleep.

When I vent, I find holding onto anger and hurt feelings only keeps me awake and agitated, so its best to forgive, for my sake, but also so that bitterness doesn't creep in and taint all my other relationships. Besides, in order to be forgiven, we are told to forgive, right? Forgive us our trespasses as we forgive those who trespass against us, goes a long way toward helping me not dwell on the past, and live in the moment. That's where Mom is, in the moment. Leave others to God. I'm only answerable for me, not anyone else. Sometimes, my vents are directed toward God, sometimes I'll call someone to vent, sometimes I get online and vent to someone who cares enough to listen. Vents help, but in the end, once I've vented, I must let it all go. When those thoughts come, release them by sending out feelings of compassion and love to those that cause me to rant, including Mom.

That's it everyone. That's how I take care of me, at this moment in time, where I am, in this journey with Mom in the world called dementia. I'm always looking for other ways that might help. Have you found ways to take care of yourself in your journey, in whatever world you are in at this moment in time? What are they? Will you share them, that I and others might benefit from the work you are doing on yourself, for yourself, and to help others?

.

The Choices We Make As Women

The women of my life occupy my thoughts these days, for obvious reasons. Mom lives with me because of memory issues (Vascular dementia and Alzheimer's) and my days are filled with laughter, sadness, aggravation, but also observation and reflection. She fills my life now and I'm recognizing among many things, how her prejudices about "women" in general have filtered into and shaped my life. 

Mom believes women should stay home, take care of their families and that men should be the breadwinners. She laments whenever the subject of women and work comes up, "This country started to deteriorate when women left their duties and went out into the work force." Unfortunately, inwardly, for years, I harbored a similar prejudice toward women with children who worked outside the home. It wasn't overt, or in your face, just a slight superiority, actually born of my own insecurities. 


Now, mind you, Mom started to work outside the home when I was about 12-years-old. It was not a career choice, but rather a reluctant choice based on perceived economic necessity. My parents divorced when I was 21. I know she partially blames herself that working outside the home somehow ruined her marriage, and negatively affected her children's lives. I saw my Mom work hard to provide a roof over our heads and put food on the table after the divorce. Coupled with the choices her children were making, life was not easy for her. I didn't blame her for the divorce, but I secretly felt life would had been better had she been home.


Once I had my own child, I wanted to stay home, even though I was single. In my twenties, in Omaha, Nebraska, I worked part-time at a doctor's office. My sister took good care of Charlie, but I missed him. I wanted to be the Mama. Of course, women who work outside the home are still the mama to their children, but it was my own emotional need to be "with" my child that was the bottom line that kept influencing the choices I made, along with, at the time, that unrecognized general prejudice about women and work. 


Having had enough of Omaha, and seeking a new and possibly better life for her children, my Mom decided to move to California to be near her sister and family. Despite my fears, California, after all was a dark, heathen place, and after struggling with my desire to be more independent (I was still living with Mom), we moved along with four of my siblings in 1973. 


There, I cleaned houses and a doctor's office; I also lived on welfare. I told people I cleaned toilets for a living. The money I earned had to be reported to the state, and was deducted from my next month's subsistence check. I didn't live high-on-the-hog as some people think about welfare recipients. I had to save money from my checks for the next month, and usually carried only a dime in my pocket after rent, utilities and food. I couldn't get ahead to get off the dole. I wanted desperately to get off of welfare, and desperately to be at home. I remember a friend told me, "Well, that's why God gives us husbands." Her implication being, husbands are there to take care of us so we don't have to work outside the home, or be on welfare. I didn't have one, husband that is. 


Nevertheless, those odd cleaning jobs allowed me to take my son with me to work. It was honest work. I rode a bike with Charlie on the back to each job; picture Rerun, of the Charlie Brown cartoon features on the back of his mom's bike. I'd sing to try to keep him awake (Sing, Charlie, Sing), because if he fell asleep, it would jerk my bike. In traffic, not a good idea. http://youtu.be/AlWI2JJ8l4Y


I hated standing in line to receive a welfare check and getting off the public dole was a major reason I moved to Tennessee in the mid 1970s.


An opportunity presented itself for me to live in a house in Farmer's Exchange and possibly care for an elderly couple for room and board, plus a small salary. If they liked me, if they decided to come home from the nursing home, and the family agreed, I would be their live-in caregiver. I could be a "work from home" mom. It felt like an answer to prayer. What would I have done if they decided not to come home or if they didn't like me? I had no clue and no back-up plan. After three years in Sunnyvale, on the San Francisco Peninsula, with $200 in my pocket and a 5-year-old in tow, I left California for the hills of Middle Tennessee. The average age of the residents in Farmer's Exchange was 80 years old. I imagined raising my child alone among them hills. 


Miss Annie and Mr. Lloyd did come home; I did take care of them. After two years I met Joe, their grandson and we were married. That's the short version. Our marriage was blessed with two children, Jennifer and David, and I spent the next twenty-four years being an at-home mom, as we lived in rural Tennessee, with a few breaks living in Kuwait and Cyprus. That "at-home" job description included teaching them at home. Joe worked overseas in the oil-field and was gone at least six months out of the year. We both felt my being at home was beneficial as I provided stability and continuity to our family life. Of course, he is very, ah, hum, how should I say it, traditional? He believes the man should bring home the bacon and the women should fry it. We clicked along those lines when the children were growing up.


That's another story for another day, but as you see, I kept making decisions, and was able to make choices that allowed me to be in the home. Even though it was hard living in Tennessee those first few years and then when I married (I don't know what made me think getting married to an oil-field worker would ease my loneliness as I often lamented Joe's absences), it all allowed me to follow my own inclinations. I had the opportunity to make the choices I made because of family and then friends. I wouldn't trade those years for anything in the world. Other mothers don't have the opportunity and/or the inclination.


My Mom's negative attitude about women and work, I now recognize, did filter into my decisions on some subconscious level to please. Distance helped me over the years, to recognize how much I wanted to please my Mom, and certainly, now that the tables are turned and she lives with me, I deal with that every day. To please her is just not possible any more, if it ever was.


Looking back, and considering my prejudices, I know that for most of my life, I'd rather listen to a male preacher then a female one. Until recently, I'd rather go to a male doctor then a female one, but I'm changing. I guess you'd call me a late feminist bloomer, or possibly a convert. Oh, how parents' attitudes can trickle down to their children. I listen to Mom now, carry on about women and work, and I argue with her on behalf of women having the right to decide whether or not to work away from home without being made to feel like they are somehow shirking their duties. 

I remind her others don't have the luxury of staying home, either because they are raising a family on their own, or because economic times are tough. There just isn't any other way. We have gone around and around talking about shared duties, not based on gender, and the fact that men can be nurturing as well as women. If Mr. Mom chooses to stay home, while his partner works, that's their choice. Nurturing is not gender specific. 


It's pointless to argue, I know, I keep saying that to myself. But I find myself reacting, seething, and arguing just the same, which is strange, since my lifestyle agrees with her. I'm still making the choice to work from home as a caregiver and writer even though over the past eight years I've acquired those missing marketable skills. If there was ever any doubt in my mind, that the only reason I wasn't seeking a career outside the home was because I couldn't do anything else, it's gone.


I do believe our choices should not be based on gender stereotypes. I believe that, because I have a daughter. If my sons can take advantage of opportunities, she should be able to as well. Though I made my choices along traditional lines, well, for the most part, I'd argue from the depths of who I am, that she should have the opportunity to pursue whatever path she is inclined to choose, especially as a human being with free will. 


My daughter has had more opportunities then I had, more then my mother had, and certainly more then my grandmothers had. As I think of my grandmothers' influence on my life, particularly the circumstances that were thrust upon them and out of them the choices they made, well, that will have to wait for another blog. 
To be continued....

Laughter is good

I should record my mother's laughter. I love it when she laughs. There are times when she is watching something particularly funny on television, or in a movie, and I'll hear her laugh and laugh. Today was a good day. Mom went to the beauty shop and liked her "do." We ate breakfast at Village Inn and talked and laughed about silly things. The waitresses and the manager know us and they greeted her, which makes her feel good. There are days when this is not the way of things, but today was a good day. Then I asked her if she wanted to go for a ride, half holding my breath. I reminded her she didn't have to, just if she wanted to, hoping to stop any wild thoughts from creeping in. It was Trader Joe's day; we needed some fresh organic fruits and vegetables and the ride was fun. We chatted like magpies and laughed and laughed. I think the laughter was all the sweeter because it had been such a rotten week for us both, though she doesn't remember the details. It just felt good. I didn't want it to stop, so I came home and after putting everything away, watched a funny movie and laughed some more.

Laughter is such good medicine, it's true.

It seems the days when it is most difficult, those are the days that I tend to write. Writing helps me work through my thoughts, my emotions, they put everything in perspective. It's my way of thinking out loud. It's therapy. Usually, a picture sits there, waiting for my thoughts to catch up to what's going on inside. My brothers and sisters get the rough draft in a HELP! email. Then I wake up in the middle of the night with my thoughts spilling out onto my keyboard. Sharing our journey makes me feel vulnerable for myself and for mom though. Sometimes, I'll dream about it. You know that dream where you walk into the room and you're half-naked?  Shudder.

Yes, Laughter is good. Has laughter helped you on this journey you are on taking care of loved ones or parents? Do you find ways to incorporate humor into your day, if it's hard to find anything humorous in your circumstances? Maybe something you do might help another, share. :)

Driving Ms Nancy

Nancy (18 yrs)  before leaving CA in 1941

Mama misses her car. Not this one, her last one. She endlessly laments "letting it go," although there was no question, with her Alzheimer's, she had to stop driving. So that job falls to me. I get such a kick out of the movie Driving Miss Daisy, that I tell Mama all the time, "You're a doodle, Mama."

One of the stories Mama repeats endlessly, if I've heard it once, I've heard it a thousand and one times, is about where she was when Pearl Harbor was bombed. She was living in California with her widowed mother and her sister's family. They spent two years there after her dad died in 1939. Fear of air strikes caused her family to return to Nebraska in 1941, a seven-day trip at 35 miles-per-hour over two-lane highways. This is one of many regrets that get rehashed in her mind and retold as if she were telling it for the first time. Having to leave California and the endless ride back to Nebraska.

Mama loves to ride, or at least she did. Since Mama moved in with me over two years ago, we've taken rides to help with the agitation that builds over perceived threats to her well-being. Long rides calmed her, much like taking a colicky child on a ride before bedtime will sometimes help them fall asleep. The rolling hills and fields of Nebraska, playing music on the oldies radio channel, allowed her to reminisce and enjoy a sunny day, when otherwise, she'd be sitting watching old movies (although, the old movies are a help too, especially those Rodger's and Hammerstein, or Lerner and Lowe musical favorites).

But lately, not always, but sometimes, and I can never predict when, she gets agitated when we go away from home. Fear of being displaced, of being carted off to some facility somewhere, even though I've assured her again and again that there are no plans to do that, that I love her and want her to be here with me, has her repeatedly saying, "You can't fool me, I'm not stupid. I know what you are up to and I don't deserve to be treated this way." She is worried I've taken her for a ride so that someone can come in and move all her things. She's afraid she'll arrive home and find her furniture has been carted off somewhere, I'm not sure where. She warns me, "All hell is going to break loose." Reassurance doesn't help, she knows what she knows. The fact that every time this happens and we arrive home with nothing changed is lost to her, because each time is new, having never happened before, because she doesn't remember.

Mama has always been perceptive, she knows something is wrong, she is just not connecting the dots, or rather, she connects them much as our thoughts do in dreams, all mish-mashed together in some strange pattern that bares a resemblance to reality, but is just not reality. It's HER reality. Dreams, perceptions, hallucinations, traces of comments, people, places, all get mixed up as she tries to make sense of her thoughts. She refuses to accept that she has a memory problem (I'm the one that needs to admit I don't remember things, right?), so I don't even try to change her perceptions any more. It's too frustrating for me and for her.

As a result, Driving Ms Nancy is not always as pleasant as it used to be, for her or for me. It's one more area of Mama's life that is closing in on her. It's one more area that is causing grief, one more area we may have to let go. Last evening, I drove Ms Nancy into Iowa, across the bridge, to buy a CD of gospel favorites that I played for her in the morning (she wanted her own copy to play on her DVD player...I would have let her use mine, it was an excuse to ride :)). I guess I'll have to forget those days it doesn't work (like Thursday) and be thankful for the days it does (like Friday). What a difference a day makes. Letting go is never easy, though with acceptance, hopefully, there will be peace...or not.

The Winter of Life

2011 (C) Shelly Stotts Photography, used by permission

Loss seems to permeate my reflections during these winter months. As the ground lay frozen and frost and snow clings to the trees, I cling to this time I have with Mom, despite its frustrations, knowing that someday our time together will end, and I'll experience a finality to this loss we are inhabiting.

Obviously, Alzheimer's is associated with "loss" as slowly loss creeps in, but it's not just the inability to recognize people (although that may happen eventually, if mom lives long enough). I noticed that's a typical response from relatives who infrequently visit. They are surprised and pleased that she recognizes them,  as if that is the only loss of memory we might be experiencing as a family. Loss of memory incorporates so many facets of our lives.

For instance, Mom loses things, because she can't remember what she did with them, nor can she remember what she was doing at the time she misplaced them to retrace her steps. That takes memory and reasoning, both of which elude her in these winter months of life. She loses not only tangible items (like her underwear, socks, glasses, sweater, the television remote), but also life events, and yet I'm fascinated by shifts that occur from one minute to the next and how the mind seeks to find itself.

Sometimes mom laughs over a lost item and asks me to help her find it because, "I put it somewhere and can't find it now." Perfectly reasonable, we all lose things and can't find them, it's just her days are sometimes filled with trying to find one item and then another. Other times, a shift occurs and frustration sets in. She can't admit to losing an item, and thinks someone, meaning me, must of moved it, or on those days when paranoia sets in, someone came in and took items that she REMEMBERS putting in her drawer, or taking out of the dryer, etc. She probably does remember doing it, just not THAT day. It's a memory from sometime in the past. Time collapses and events get mixed up in memory. She becomes agitated at the thought I might be trying to make her seem crazy because I won't admit someone has taken them. The last time this happened, I just bought her some new socks and underwear rather then argue someone didn't take them. When she received them, she, of course, had forgotten that it had recently been a major issue for her.

Events can be lost. "I don't remember whole sections of time when I lived in California, but I remember vividly my life on 28th Street when I was a child, why is that?" Those cherished events in her life, when her father was alive, seem frozen in memory, and are repeated endlessly with only slight variations. Its comforting for her to recall the same stories over and over as proof, she remembers.

Curiously, I've noticed lately, other memories are new, just not of events in which she actually participated. Mom can remember events clear as day that never happened, to her. She thinks that they are events that she lived, but in fact, they are memories of stories told to her by others, that she now incorporates in her mind as hers.

As an illustration, yesterday, she remembered someone and was recalling an association. She told me she spent two years with a young man and got to know him before his death. "He grew into a fine young man, really special." This never happened to her, but somewhere, deep within her mind, she remembers the story of his life and now, she has incorporated it into her life story. So surprisingly, at least for mom, the loss of memory includes a found section.

And then too, amazingly enough, there are times when automatic responses kick in and her mind doesn't really grope for information. Having worked in the medical field for decades, when my brother was recently hospitalized, mom talked to him on the phone and asked all the pertinent questions and responded to his answers meaningfully. But, once the conversation ended and time passed (it doesn't take long), she had trouble remembering why he was in the hospital and asked repeatedly, what was wrong, what were they doing, and she accused me of not telling her everything. Trips to the hospital helped, while we were there, but then afterwards, it all disappeared except for the uneasiness and agitation of knowing something was wrong. It was difficult for her to process it all, but the memory of the emotions when learning of his hospitalization remained.

I just finished reading, The House on Beartown Road, by Elizabeth Cohen. In it she recounts a winter she spent caring for her father (an Alzheimer's victim) and her infant daughter. All our experiences as children and/or caregivers of Alzheimer's sufferers are unique, but hers was particularly poignant as she cared for loved ones at the beginning of life and at the end and made associations between the two. As I came to the end of her memoir, and read about her father's condition at the time of publication, it reminded me (such a good word...to re-mind) of what may be in store for mom, for loved ones, or for me, in the winter years, but who knows.

I read predictions about the likelihood of baby-boomers suffering some form of dementia if we live long enough and I'd be lying if I said it didn't concern me. Watching mom lose things, events, people, in a weird sort of way, it's encouraging to know that the mind still seeks to find itself, and if it can't, it incorporates the memories of others as its own in order to comfort itself in loss.

Life as a dog

2010 (c) Shelly Stotts Photography, used by permission

Living with Mom (she has Alzheimer's), I can quickly, without warning, find myself in the dog house.

Last night, she accused me of "not liking her," and that if I wanted to get rid of her, she could go live in a nursing home.

At the time, I had NO IDEA what was going on in her mind that brought this up. It really doesn't matter. To try to untangle an Alzheimer's mind is just impossible. I find clues sometimes, but there is never any way to anticipate. Besides it would drive me crazy to try to circumvent all the possibilities. All I can do is assure her that I don't want her to leave and wait for whatever it is to pass.

That sounds simple, doesn't it. Well, its not. The minute I hear her say, "I have something to ask you?" Or "I'd just like to know....." my blood pressure begins to rise, and I wait clenching my teeth for that which is to come.

Mom doesn't realize how bizarre sometimes her thoughts are, because to her, they are real and she is right. I try not to argue, but when accused, it's hard not to want to talk her out of her perception by explaining how she has mis-interpreted things. Besides, it seems delusional to me, but to her, I'm the one that is delusional, naive, or forgetful. Who is right? Depends on your perception, doesn't it?

Another alternative is to just run and hide in the doghouse.

Oh well. Being in the doghouse is not such a bad place to be. Looking out on my little world from the confines of my little doggie bed, I find comfort in the fact that these episodes come and go and tomorrow, hopefully, I'll be able to cautiously sneak out from my "safe-place" and find laughter, singing, and joy. For now though, I think I'll just snuggle in.

Being

"We are so obsessed with doing that we have no time and no imagination left for being. As a result, men are valued not for what they are but for what they do or what they have - for their usefulness." ~Thomas Merton

Mom and I circa 1993

One of my mother's laments is over her loss of a sense of usefulness. All her adult life, she has worked, first at home raising seven children, and when my parents divorced, she spent long hours working, sometimes two jobs, to put food on the table and a roof over our heads. In her later years, she worked to provide for her own living expenses (as best she could). She helped others by opening her home to various children and grand-children as they needed a temporary place to land. After she retired, she moved back to our hometown and obtained part-time work to keep busy. Eventually, the position was discontinued, and with her declining cognitive abilities, it became difficult for her to consider another job, although she still mentions finding work so that she can feel more productive.


Her days have dwindled to washing her own clothes, putting dishes away in the cupboard (although this is also becoming difficult for her), taking out the trash, and tiddying up her living space. She has no interest to organize or engage in any sort of hobby. She spent so many years working a job, that she didn't develop any, and even if she had, I'm not sure at this point she'd be able to manage them. She did enjoy reading, but that also has become difficult, not only because of failing eyesight (macular degeneration), but also because of her decreasing ability to follow a storyline. It's difficult for her to remember what she read on the previous page.


Unfortunately, visiting with others, friends and relatives, has created more agitation instead of relieving it. Her perception is that others are visiting to "check her out, critiquing her" to see if she is crazy. She thinks I set these visits up so that I can get their critique in order to put her away. Nothing could be further from the truth, but that is her perception and she knows what she knows. She still needs the visits, even if they disturb her. 

Her interests now are watching her movies, eating out, and going for rides. Riding in the car, seems to calm the periods of agitation that creep up on her.

Mom 2010

I've been thinking a lot about "being" in comparison to "doing," as I watch mom's abilities decline and also as my ability to ease her distress is limited. Mom is not unique in feeling that it is what you "do" or "what you have" that matters, not who you are. It is not only prevalent in society at large, but also in how we view "ministry." I remember a conversation with a fellow Catholic who just couldn't quite render equivalency to the ministry of contemplatives (those that live in cloistered religious orders and spend the majority of their time praying) and those out in the world actively involved in ministry of some sort, relieving the sick, ministering to the poor, evangelizing those that are considered outside God's will.


A high premium is placed on that which can be seen, rather than the unseen, that which can be measured, counted, and visualized as successful. It makes us "feel" of worth, a sense of accomplishment. This is not to say there isn't a need for actively engaging society in order to minister. Jesus warned in the coming judgment that the shepherd will divide the sheep to the right and the goats to the left according to whether or not they ministered to Him. "I was hungry and  you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me." (Mt 25:34-37) Those that inherit the kingdom are those the King recognizes, those that ministered unto "the least of these my brethren;" because as they did to the least, the King says, they "did it to me." (Mt 25: 40).


But there is a need to be actively engaged in prayer, contemplation, and meditation as well. As water is to a garden, so prayer and meditation is to the world around us, that those in it might bear the fruit of righteousness and holiness, for in the end, that is the goal, not "usefulness." Prayer is a mighty weapon and an effective means to holiness for us and for others.


Even at that, in the end, to pray might be too much for some. To value my mother because of her prayers would also be to miss the point. She is valued because she is and this world, certainly my world, would not have been the same without her. As she continues to pull inward, and as my ability to relieve her distress, lessens, I hope and pray I remember that being together in this, no matter what shape "it" takes, even if mom seems "far away," is exhibiting a sweet, fruitful fragrance in a world that seems more and more to devalue the unseen and unproductive among us.

Perception

Photo (c) 2010 Joaquin Aragon, used by permission

Perceptions paint colors of various hues on my day. Is the glass half-full or half-empty? Am I in a cave viewing only shadows, not reality itself? Or is the brightness of sunlight illuminating the dark corners of my mind so that I can see the dust particles floating about?

For years, Sundays were the busiest day of the week for me. I used my Monday(s) as a day to recuperate. My perception of Monday, therefore, is one of quiet, restful reflection about the upcoming week even though my life has changed. I do sympathize with those who must start their workweek and dread Mondays. I hear, "Yep, it was another Monday!" on social networking sites, meaning, all hell broke loose, or at the very least, nothing "seemed" to go right.

I often wonder, is it the anticipation that my Monday will be quiet and restful that colors my perception, so much so that no matter what happens on Monday, I tend to see it as positive? Is it contrariwise for others?

As I watch Mom cope with her own reality from day to day, colored by her perceptions, it was interesting to me to see that yesterday, Sunday, a day that typically, for years, filled her mind with doom and gloom, was actually pleasant, filled with laughter. She even started, at one point, singing in her mind "June is Busting Out all Over," after she asked me what month it was. What made the difference? For one thing, she didn't remember it was Sunday. To her, it was just another day, but one that, at least yesterday, didn't have thoughts of doom and gloom clouding her perception.

Living with Alzheimer's

Photo (c) 2009, David McClearen

My mother lives with Alzheimer's. 
I live with Alzheimer's too, because mom 
lives with me. 

Her memories are all mixed up, her perceptions fused with her paranoia, short-term memory loss means conversations are difficult because thoughts are repeated endlessly, and sometimes, hallucinations are accepted as real-life events with little room for discussion as to the validity of them. Some days a dark cloud descends and life is bleak.

It does no good to remember the relationship we had in the past. It has changed. Mom knows her relationships have changed and she can't find a reason for it. It does no good telling her the change is in her mind. Even if she could accept it, which she can't, she would forget the conversation soon after, and would wonder to herself again, what happened.

It also does no good trying to get her to remember, as if by saying, "Mom, remember this or that," she will somehow suddenly put everything together in one Ah Ha! moment. It only frustrates her and makes her feel like I think she is crazy, which I don't. Sometimes, with a little guidance, she can come to an understanding that is consistent with reality, but her reality changes with her perceptions, her perceptions are her reality, so even though there might be a meeting of the minds, it soon passes, and we are back to square one.

Other days, laughter fills our conversations, and I find mom delightful. Today was one of those days.
It's best to take each moment, each hour, each day as they come. That is easier said then done, but I'm learning. I never know, when she ascends the stairs, if I'll meet the lady or the tiger, but whoever she is at that moment, she is still my mom, and I love her. I am grateful, will be eternally grateful, for this time we have together, living with Alzheimer's. She is not the disease, she lives with it. And so do I.