Jul
28

Embrace Your Spouse

by Christine

If you are lucky or have worked real hard, your home is a sanctuary and a safe place. It's the place where you can recharge and renew your energy before heading out into the world again. A lovely home with comfortable furnishing make the surroundings nice but the joy in a home comes from the people that you share it with. 

The stress of my mother's end of life journey invaded the home Marty and I had created. Marty, as my mother would say, was a "real trooper". He did not complain or question my need to be with my mother during her end of life journey. Looking back on that period, it was a rocky time for the both of us.

I did not see how unhappy Marty was until he spoke up after another frantic call from down South asking me to return. Marty knew I had to go and wasn't trying to stop me but he wanted some recognition from me that I knew this was hard on him too. As we talked about his feeling I came to understand that is was painful for Marty to see me in pain and be unable to do anything alleviate it. I also began to see that it wasn't just my life "on hold" but that our life was on hold as I walked my mother's end of life journey with her. 

Recently I was talking to a friend whose widowed mother was in crisis. She was sharing with me her difficulty at taking control of her mother's physical and financial world, her worry about finding the right kind of help to care for her and how to pay for it all. Our conversation was identical to the ones being held everyday by people whose parents are aging. As we talked I noticed her husband mentally withdraw from the conversation and eventually move away from us physically. I know this couple to be loving and supportive of one another but I could see how difficult our conversation was for my friend's spouse. Their whole life had become about caring for my friend's aging mother and he couldn't handle listening to the conversation one more time. 

The pain of watching your mom or dad leave this world is not yours alone. The pain touches the people that care about you too. I encourage you to reach out to your significant other and acknowledge their love and support during this journey. You are not walking this journey alone and your spouse may need a physical and emotional embrace along the way too. 

Hugs,
C

 

Jul
23

Healing After Loss

by Christine

This August it will be two years since I headed out to Whitefish, Montana for Laura Munson's Writing Retreat. Montana is where I met Kristin Meekhof, a young women who was a fellow writer and now a friend. Over the past two years, Kristin has brought to life her book, A Widow's Guide to Healing: Gentle Support and Advice for the First Five Years. Kristin lost her husband to adrenal cancer in only seven weeks after the initial diagnoses. Kristin wrote this book to help guide women through the first five years of widowhood as they work to navigate the new realities of their life.  

In addition to completing her book, Kristin has spent the last two years meeting with widows all around the world who have transformed their loss into something beautiful. Kristin's story is about transforming her loss into a book that will help other. I encourage you to pre-order a copy for any woman in your life that is going through this transition. The book will be released in paperback on November 3, 2015.

Hugs,
C

Jul
21

Forgiveness Sets You Free

by Christine

My last two posts were about forgiving our family and us as we stumble and fall while walking the end of life journey with our parents. Today, I'm writing about forgiving our friends. I've come across multiple blogs and articles about "what not to say" to someone who is in the throws of watching a parent or loved one die. Most of these pieces tell us more about the author than about the person trying to comfort his or her friend.

The challenge for the person who is watching a friend suffer is to know when to speak up and when to remain silent. Most of the time we say to our friends what would comfort us. If it gives us comfort to know that God is in control we share out belief that "God has a plan" even in difficult times. Or if we believe that the death of this body is not the end, we will share our belief that "You will see them again" one day. These words are meant to lessen the pain not cause more.

Even after 30 years, I still remember one of the most painful responses a young widow I knew gave to a well-meaning friend after hearing her husband had been tragically killed in a plane crash. The friend, who was a person of faith said, "But today he is with God". And the widow responded, "I know but I will miss him so". I was not the only person in the room dumb struck by the pain in her voice. It silenced us all. 

I don't believe in a one size fits all response when comforting friends who are watching their parents struggle with aging and dying. The lesson I learned through my personal journey is that my friends, like my siblings and me will make mistakes. Some mistakes will be less painful than others but people aren't perfect. What is perfect is your friends desire to soothe your pain. When your friend shares his or her personal belief they are trying to put a salve on your wound. Remember when you were very little and would get hurt and your friend offered up his or her "lovey" for you to cuddle. You probably pushed the lovey away because you needed your lovey. But hold on to the knowledge that your friend's offer was filled with love and a desire to lessen your pain. 

Forgive your friends. They are trying the best they can to love and care for you during a difficult time. Forgiveness will lightens your load. 

Hugs,
C

Week 6: Your Spouse

Jul
14

You Will Have Regrets

by Christine

My father died of a stroke, a stroke that destroyed both hemispheres of his brain. How do I know this?  The lead doctor of the Jacksonville Mayo Clinic medical team caring for my father told me. He sat down in a dimly lit consultation room with my mother and our family and meticulously and diligently reviewed my father's test results with us. The MRI showed clearly the results of the stroke and while the doctor's words were gentle and measured, he offered no hope. My father was gone. He advised us to remove the machines after the 72-hour state mandated waiting period was met. With stroke victims, if a miracle were going to happen, it would be in the first 72 hours. 

Embarrassingly, I didn't understand that the moment my father was removed from the machines, he would cease breathing and his heart would stop. I asked if we could take my father home, thinking he would prefer to die at home. The doctor looked at me in confusion and bewilderment asking me if we could handle an ICU set up at home. My sister still teases me about the exchange between the doctor and me. I don't really think it was all that funny but our family has an offbeat sense of humor during stressful times. I share this little antidote as an example of how we may hear the words in a conversation but don't always understand their meaning. 

Since we could not take Dad home, we waited at the hospital taking turns sitting by his bedside. Doctors of all disciplines came into check on my father but the Neurologist and his team had the most interaction with him. Each time they came into see him they conducted a physical exam. The Neurologist tested his motor system, sensory system and deep tendon reflexes. The process was the same each time as the doctor looked for a state of consciousness at any level. After one such exam, the Neurologist was recounting what he had learned while a nurse was beginning to change my father's IV. My father was a strong man and pulled up his arm as the nurse tried to insert the needle. The doctor saw the alarm on my face and said, "That's a brainstem reflex. It is involuntary." I said, "Oh" and continued our conversation. 

To this day, I regret not stopping the conversation with the doctor and walking over to the bed to speak to my dad. A little voice in me says "what if?". Nothing changed in his condition from the moment he slid into a coma but I still regret not going to his side. Months after my father died my mother asked me if she should have waited longer than the 72-hour waiting period before removing life support, just to see what would happen. Mom was regretting her decision. If I had walked over to my father's bed or if Mom had waited a couple more days before removing life support, the outcome would have been no different. I know this but regret lingers for me as it did for my mother. 

The end of life journey and the ultimate death of our parents are littered with what ifs and maybe I should haves. Somehow we believe leaving this world should be clean and quick but most of the time if we make it to old age, it is not. Regret in death as in life is normal. Try not to be consumed by what ifs or the maybe I should haves and embrace and accept the knowledge that you loved your parents and tried to do the best for them you could.

Hugs,
C

Week 5: Mistakes Will Happen

Jul
07

Déjà Vu All Over Again

by Christine

My parents raised three children. I am the oldest while my brother is the middle child and my sister is the youngest. We have many common traits but from a very young age we responded quite differently to situation where emotions are running high or are uncomfortable. My response is to take control, while my brother disengages. My sister's response is to act as a peacemaker. During those times when we can't move to our default position our discomfort starts to go through the roof.

When my father died, my siblings and I were surprised to learn that my parents had not made any burial arrangements. No, we were shocked because my father was a "planner" and we, as his children, thought he was perfect. We were dealing with the shock of his death and then having to face-up to the fact that maybe, just maybe he didn't do everything perfectly.  We were each struggling with the loss of our father and this was making working as a team difficult. At this point, my mother decides that we should ALL go as a family to make the final arrangements for my father. Whenever I remember that day I think of the robot from Lost in Space waving his retractable tube arms and yelling, "Danger Will Robinson"

None of us wanted to make funeral arrangements. My brother desperately wanted to disengage and be any place else besides the funeral home but he loved my mother and wanted to support her. To be fully transparent, I wanted to make the funeral arrangements but only if I could have complete and absolute control over all decisions. I was not in a good place to negotiate with anyone, not even my mother. As for my sister, she felt the tension in the room and knew she couldn't calm the situation so she wanted to be any place but there. I think she even spent some time hiding out in the bathroom. My mother's expectation for this outing went against every one of our personalities and was an exhausting process. Let's just say it took several years for us to talk about what happened that day and a couple more years before we could laugh about it. 

What I learned from that painful day is that whatever your role is in your family growing up, it is intensified as your parent walks their end of life journey. Hundreds of people have shared with me the challenges they have had with their sibling as their parents' age. One complaint is that a brother or sister will disappear and not "help" with their parents. A second complaint is that a brother or sister takes control and unilaterally makes decisions and refuses to let anyone else help. A third complaint is that a sibling will promise to do something but fails to live up to his or her word. When I ask them if this is new behavior, the answer is always the same. "No, my sister or brother has always been that way! She has just gotten worse since my parents are ill."

The expectation that somehow in this most critical and stress filled period of your siblings life that they are going to change is unreasonable. Think about it. Are you going to change a lifetime of behavior when you are struggling to say goodbye to your mother or father? No, so why do you think your siblings will? The best you can do is to concentrate on your brother or sister's positive traits. When my mother was in the hospital, my sister took on the task of checking my mother's telephone voicemail and responding to well wishers who wanted updated information...daily. I didn't have it in me to spend all day at the hospital and then come home and talk to my mother's friends on the phone. My sister did and my brother and I are grateful for my sister's willingness to be the point person and for her kindness towards my mother's friends. 

Take a moment to reflect on your siblings with a kind but realistic eye and then forgive them their weaknesses and lean on their strengths. You would want them to do the same for you. Remember they too are losing a parent. 

Hugs,
C

Week 4: Regrets and Acceptance

 

Jun
23

The Desire For Perfection

by Christine

The first half of my life was spent striving for perfection in all that I did. And let me tell you, chasing that goal is exhausting and deflating because I found perfection to be illusive and unattainable. To paraphrase Voltaire, perfect is the enemy of good. And is also the enemy of done. The second half of my life has been spent taming that urge and ignoring the little voice that says I should refuse to accept any standard short of perfection. Sometimes good is enough and done feels wonderful!

The desire for perfection started to over take me again as my mother began to fail physically and mentally. Undaunted by circumstances I slogged away at pursuing a well-ordered life and an organized calendar an aspiration that was divorced from the reality of my existence. What did I think a perfect life looked like? Well, I would be in control emotionally, my home and business would be running super smoothly and I would quickly and with perfect logic make all decisions pertaining to my mother with love and wisdom. And oh, my hair and fingernails would be nicely done at all times.  

The reality, though, was much different. My life was mess. My mother's strokes, falls and mental lapses ruled my calendar. I was torn between being in Jacksonville with Mom and being at home in New York. Doctors were unable to give black and white answers to my questions so I was forced to make decisions in the world of grey. Home Health Aides helped with Mom's care but I continued to stress about "outsourcing" that part of Mom's life to strangers. My company was on autopilot and I was unable to dedicate the time necessary to grow the business. Stress was causing me to forget things so I lived in fear that something would fall through the cracks at home or in my business. Perfection was nowhere on my radar, only fatigue and the fear of failure. 

As I said in the beginning the goal of this series is to share the lessons I learned during my parent's end of life journey so that others might not feel so alone. One lesson might be difficult to do and the second one might be difficult to read. First, give yourself a break. You are watching your parent's exit this world. These are the people who gave you life, raised you and loved you no matter how imperfectly. It is not easy to say goodbye. If you anguish over making the correct medical or financial decisions on their behalf, so be it. If you forget a birthday, a doctor's appointment or to pick-up the dry cleaning as you move from being the child of your parent to caregiver of your parent then forgive yourself. Perfectionism steals the joy from life in the good times and the hard times. 

Second, hard times don't last forever. I learned early in life that the good times don't last forever but neither do the hard times. Life is much like the coming in and going out of the tides; there are high tides and low tides to life. While you are in the middle of this journey, you may feel it is going to last forever but it won't. One day this part of your life will come to a close and the fatigue will subside and your memory will improve. If you embrace it then joy will be part of your life again. 

Hugs,
C

Week 3: Déjà Vu All Over Again

 

 

 

 

Jun
15

The Long And Winding Road

by Christine

The other day I was talking with a friend who is struggling with making decision about care for his aging mother. His mom is no longer capable of living alone nor is she able to make financial decision for herself. I causally mentioned how difficult it is to walk the end of life journey with an aging parent. Later as I thought about our conversation, I wondered if my friend realized this was the path he was on and if I had been too forward in using that phrase. 

I use the phrase "end of life journey" differently than hospice and the medical profession. For the medical world, the end of life journey is a period of active dying and is tied to a specific physical process. I define the end of life journey as the period of time after a life altering physical or mental event that changes the trajectory of life in the elderly. I will give you two examples. My father suffered a sudden death episode that only 15% of people survive. He lived three years after this event. My mother fell and broke her right ankle and left wrist. She lived four years after this fall. In both cases, no matter how hard they tried; they never resumed life as it was lived before their health crisis. My father spent the remaining years of his life in and out of the hospital and doctor's offices believing that it was only a matter of time before he would be on the golf course again. 

Frankly, our entire family believed it was going to be just a "matter of time" before my father was back to "normal". We could not imagine him any other way. Because of my mother's personality, the family wasn't quite as convinced that she would return to her "previous life" but we never saw it as the beginning of her end of life journey.

It was only after they died that it became clear when their end of life journey began and that was also when the pangs of guilt began in me. I started with the "if, only" thoughts. If only I had been more patient, available or educated about the aging process, I could have been more supportive during this time. In retrospect three or four years didn't seem to be a long time to defer my life to my aging parent. But here's the fallacy to that kind of thinking. You don't know this is the end nor would you want to know. My parent's needed their dignity and independence for as long as they could maintain it. I supplied the amount of help and support they needed at the time, no more, no less. Mom and Dad didn't need me hovering around the periphery of their life on deathwatch.  

I have come to think of ones end of life journey as the same as playing jazz music. Playing jazz with a group of musician requires each musician to be willing to improvise and at times spontaneously create a new riff. At other times you may repeat cycles of cord changes or maybe end up in a whole new direction you didn't anticipate. Sometimes the music is brilliant and at others not so brilliant. To me ones end of life journey is the same. The people who walk that journey with his or her parents must be willing to improvise, spontaneously create new riffs and even repeat cycles of behaviors. But in the end, leave the guilt at the door. A musician doesn't feel guilt if he or she didn't think of a particular riff at the time of a jazz sesson and neither should we. 

Hugs.
C

Week 2: The Desire for Perfection

 

Jun
02

The Third Anniversary

by Christine

Yesterday was the third anniversary of my mother's death. I listen as friends and acquaintances declare that it seems like "just yesterday" their mom or dad died even though years have passed and that they wake everyday missing their parents. Truthfully, that has not been my experience. Three years ago I sat next to my mom's bed at Hospice as she took her last breath and while I remember the silence of that room after her breathing ceased, the memories of hospitals and the bone weary fatigue of that time has faded. There are times that I think of my mother and father with love, affection and laughter but I don't pine for them or for the past.

At first I felt a bit guilty that I didn't feel the same way as my friends and contemporaries about my departed parents. Candidly, I thought maybe there was something wrong with my relationship with my parents or with me. But if the truth be told, it's my parent's fault. They raised me this way. I remember clearly, when Matthew was little and in bed with an earache at my parent's home, my dad admonishing me for fretting over him. I can still hear him say, "Christine, he's okay. He will be alright." His message was clear. Don't waste your energy on worry or sadness; as my mother would say, "Don't borrow trouble". They were people who lived in a world where you managed those things in life you could and then let everything else go. 

On this anniversary of Mom's death, I am starting a new series. I'm sharing the lessons I learned while walking my mother's end of life journey with her. An intimacy exists between the two people that are on this journey that makes it unique to them alone. My journey with my mother was not identical to the one my sister and brother walked with her but because we are human we also shared a common experience. Over the next 10 weeks, I will share with you what I learned and may it help you feel less alone. 

Hugs,
C

 

Week 1: You won't know it is the end until it's over.

 

Mar
18

60 Is The New 20

by Christine

In my twenties, I experienced a period of great experimentation and wonder. Woodstock and dancing the night away at Studio 54 in an altered state of reality wasn't my world of 20. My life, my art was having fun through learning and observing. My days were spent figuring out how to love and nurture my children. I read books about child rearing and prepared meals that fed the small bodies of the two people I found most precious in the world. I consciously limited television viewing of my young ones to Mister Rogers and Sesame Street. We sat on the floor together and built Legos, had tea parties with dolls and played outside in the rain.

As a family we visited museums, parks and shared peanut butter and jelly sandwiches on the beach while watching the sun dip below the horizon. I took classes at the local University in Political Science and Literature and studied after the kids went to sleep at night. I worked outside the home off and on during this period in a couple of difference fields deciding what I did and didn't like about the world of business. I even found time to do yoga late at night with a PBS program called Lilias, Yoga and You.

But sometime in my early 30's a shift occurred. I cared deeply about my children and living a creative life but my actions became less about teaching, learning and nurturing and more about keeping the balls in the air. Life became SERIOUS. My children's education, my career and the act of putting a roof over our heads stopped feeling like an adventure.

Reviewing report cards became an earnest exercise in college planning. Job action plans and annual reviews were my focus instead of whether I liked the work or the people with whom I worked.  Discussions of my generations ever shifting financial world of savings accounts (or lack thereof), 401Ks and retirement replaced discussion of political thought or who was funnier Animal or Statler and Waldorf of the Muppets. This evolution continued well into my 50s. 

Don't get me wrong, there was laughter and fun but being energized about basic life experiences evaporated. Marveling about the chemistry behind baking a batch of Toll House Cookies gave way to the pressure of just getting it done. Amazingly another shift occurred when I turned 60. I find that I am once again energized by learning and watching life unfold. Joy at living life, being with friends and observing the world around me makes the world feel special. How?  Take winter for example.

Snow blankets our region and biting cold temperatures force thoughtful preparation before heading outside. The tendency is to walk fast with your head down is re-enforce by temperature in the single digits.  As I walked to the car, I stopped in wonderment. The sun was shining and yet, snow as light as the seeds from a dandelion blowball was falling. The new snow was lightly covering the old mounds of snow and sparkled like diamonds. As the wind caught the snow and swirled it through the air, the ice crystals reflected the light to create silver glitter. I was standing in a wind tunnel of glitter surrounded by sparkling diamonds. At that moment, I was astounded by the beauty around me and wanted to share the feeling and moment with everyone. 60 is the new 20 and I am grateful. 

Hugs,
C

Mar
16

Hibernation As Covert Preparation

by Christine

Do you remember the Hannah and Barbera cartoon character, Yogi Bear? Yogi was a meddlesome bear who was always into something that required Ranger Smith's attention. In a moment of exasperation Ranger Smith said to Yogi:

"Come on, Yogi. Would it really be so hard to be a regular bear?
You know, to forage for food, to walk around on all fours...
to hibernate a little, or a lot."

To which Yogi replied:

"If nature had meant for me to be a regular bear...
it wouldn't have given me such a good thought-cooker, sir."

                                                     

Yogi hibernate, NEVER! I get it. He's a bear that makes things happen and why waste a minute of time resting or being inactive? Carpe Diem baby! 

All my life I've been like Yogi but as much as I want to siege the day, this winter I've felt the need to hibernate. I don't think it's so much that winter calls for me to embrace a period of rest and reflection as it's a response to the series of losses and changes in my life. My mother's death and my son's accident are just two life altering events that I refused to let slow me down. This past Christmas though, I said enough. I tossed out my to-do list, put aside the blog, dusted off my reading list and started chopping winter vegetables for soup. I now have lunch with friends. I started a book club. My neighbors come over for good conversation and food and drink on these cold, dark evenings.

The result? I am laughing more and have spent time with some really good people. I tell stories about my Mom and Dad without sadness gripping my heart. But most of all, I feel the stirrings of "what next?". There is an excitement when I think of the months ahead. There's happiness in being a "regular" human. 

Growing up, summer in Florida was similar to a period of hibernation. During the brutally hot months of July and August, my parents would take us to Lake Brooklyn for a water vacation. We would swim and water ski until our arms and legs were wobbly. Mom called for rest time after lunch so I would float in the water watching the clouds morph from kittens to trucks to witches with long, hooked noses. In the shade of the porch, I would read biographies of famous Americans one after another until my mother suggested I give another genre a try. This was a period of rest that gave way to action when school started in the fall. As Ralph Ellison wrote, hibernation is a covert preparation of a more overt action.

I'm giving my "thought-cooker" and body a rest. The knowledge that this period of time is brief and will give way to spring soon is ever present. The benefit of slowing down during this leg of the journey is renewed energy.

Hugs,
C

 

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