Life Is Pretty Amazing

by Christine

Over the last ten weeks I've written about forgiveness, loss, fatigue and saying goodbye to our parents as they walk their end of life journey. Realistically, the death of ones parents is not really the end of the journey for those left behind. There are funeral arrangements to be made, homes to be cleared out and sold while other legal matters are addressed. Not surprisingly grief set-in and colored my world after all the business of my mother's life was completed. 

I returned home and my life headed in another direction. No more panicked phone calls from family or healthcare providers alerting me to another health crisis. I didn't have to hop a plane to Jacksonville and spend a month living out of a suitcase. Strokes were not longer ravaging my mother's body and causing her to wonder as a child might when she would be allowed to return home from the rehabilitation center. Now I experienced a wave of sadness when I would think "I need to call mom" about something happening in my life and then remember I couldn't. At first I was eager to organize my parent's family photographs and my mother's recipes but couldn't complete the task because it exacerbated the sadness I felt.

Slowly the sadness that had been part of my being for months started to subside. Over time sorrow no longer tainted the memories of my mother and my father. I was able to remember and honor their life through laughter and positive reminiscences. Everyone's journey through grief is different but mine lasted just under three years beginning to end. It happened without warning but one day I consciously thought "I feel joy". I learned how sad I had been once I was no longer sad.

Life is lived in seasons and I have entered a new season of life. I am the matriarch of my family now and I intentionally work to be as good a grandmother to my grandchildren as my mother was to hers. After watching two pillars of my life die, it is abundantly clear to me that the end of life journey will one day be mine to walk and I have no time to waste on the petty and mundane of this world. Life is exhilarating, delicious, delightful, entertaining, opportune, fortuitous and above all short. I embrace the joy in my life and daily, I am reminded that life is pretty amazing. This is the lesson I took away from my parent's end of life journey and I am blessed to have walked it with them.  




Fatigue That Come From Loss

by Christine


Last week I wrote about asking the right questions when making decisions as you walk the end of life journey with your parents. Today, I am looking at the fatigue that come from loss and what it means to those experiencing it. For the last six months of my mother's life I was tired. Bone tired. I asked others for help where it made sense, I tried to eat healthy meals and exercise and I worked to get plenty of sleep but I was still tired. What I now understand is the fatigue I was experiencing was not just physical it was mental too. In retrospect I was probably depressed but that didn't occur to me at the time. Fatigue and the desire to cocoon was a part of my daily life. 

When you are in the process of watching your parents or someone you love exit this life, the fatigue you may be feeling is as much mental as it is physical. Yes, you can take action to lesson the effects of fatigue on your body such as diet and exercise but sometimes that isn't enough. In my case it was a tough six months but I did get through it. My friend if you are walking this journey now, sit quietly and take stock of how you are feeling. If you are weary and fatigued and there is no end in sight then consider reaching out to your health care professional for support. Yes, you can just push through but if there is help to lessen the strain, why not take advantage of the support? But also know the fatigue you are feeling is situational and will dissipate when your situation changes.

If you are living with a spouse or watching a friend walk this journey, I encourage you to be patient but vigilant. Your loved one may complain of being tired all the time or become indifferent to activities they once loved. He or she may only want to be at home or curled up on the sofa watching mindless TV. This is normal but if months of care for a failing parent turns into years of care, then you might want to gently suggest your loved one check in with his or her doctor. I am not a professional in this area but I do know long-term stress and fatigue takes its toll on the body. The reality is 80% of elderly people receiving assistance are in private homes so you and your spouse aren't the only ones navigating this territory. 

We may feel it is our responsibility to care for our parents as they age but it is also a privilege. As you walk this journey, remember you are a family whether by birth or by choice, and you must take care of yourself too, as you are taking care of your parents. 



Money: The Albatross In The Room

by Christine

My mother used to say, "We can buy anything thing we want, just not everything we want." Now keep in mind my mother was a depression era child whose wants were modest. My father and mother were savers and lived well within their means so when it was time to retire, they were able to do so "comfortably".  My parents had a life long commitment to paying their way during their tenure on this planet and it was their sincere hope to have some money left over to leave to their children. To some this may seem to be an old-fashioned belief system but that was who they were. 

My mother wanted to spend the rest of her life in the home she shared with my father at the time of his death. It was a request that our family worked diligently to honor even after mom's body and mind started to fail. Ramps were built for easy access at her house, caregivers were brought in and family members spent as much time as they could with Mom so that she could remain at home. The money was there so why not use it?

All good, right? Well not exactly. Money started flying out the door and a nest egg that looked substantial at the time of retirement was now being depleted at a pace that no one could have predicted. We started to question how long we could responsibly maintain the life we created for Mom at home before we would be forced to move her into a nursing home. There were agonizing conversations between family members on how long could we afford to do this. Truthfully, we never had to make a decision because my mom died before we got to a critical point.

We found money to be an albatross because it became the center of the conversation instead of starting from a point of, is this the “right thing” to do. Let me give you an example. My mother, like her mother before her, developed diabetes later in life and had multiple strokes the last six months of her life until a final stroke killed her. Each time Mom had a stroke she was transported to the hospital where they stabilized her and ran a battery of tests to learn the extent of the damage.

After her first stroke, she regained 95 to 98% of her mental and physical function but with each subsequent stroke that percentage decreased. She went to the same hospital, had the same battery of doctors and the response was identical each time, “your mom is aging and this will probably continue to happen”. Again, you might say, all good?

Well, here’s the problem, the doctors felt because Mom had good insurance (i.e. Medicare, a bridge policy and the ability to pay co-pays and out of pocket fees) why not run all these tests and procedures? The doctors wanted to “do something”. Their profession is all about healing and to admit they could do nothing for my mother went against all their training.  And we, of course, wanted Mom to have the best care so why not do it?

Well, here’s why not? Some of the tests were painful, others caused her to become disoriented or sedated to the point she could not communicate. It was only after her fourth trip to the hospital that we asked the doctors if it would change the outcome if my mother didn’t take the battery of tests. Bingo! That was the question we should have been asking, not could Mom afford the tests. Money had nothing to do with it.

I know there are families who are dealing with the opposite challenge when it comes to money. I know individuals who have taken their mom or dad into their home because they feel there’s no money for another alternatives or that they don’t want to confront selling their parent’s home or liquidating other assets to pay for their care. And truthfully only you can answer that but I put to you, are you asking the right questions? Would it be better for mom or dad to be in a group situation like a nursing home but they “just won’t go”? Are you ruining your health, your marriage or your job because you can’t bear the thought of mom or dad being in “one of those places”. Is it really a question of money or is the alternative a more difficult choice?

Years ago someone said to me “money is rarely the real reason we don’t do something”. The mentor sharing her philosophy with me believed we fail to act because we lack the will, the know-how or the self-confidence to take the steps necessary to move forward. My lesson after walking the end of life journey with my mother is to take sometime to ask the right questions. And only after asking the right question, should money be considered.







Angel With A Broken Wing

by Christine

Over the last seven weeks, I've shared with you the lessons I learned while walking the end of life journey with my parents. Most of the discussions have centered on forgiveness for those closest to you and youself. Today I am blogging about paid caregivers, the people who may spend more time with your parents at the end than even you. Next to money, the most frequently discussed issue surrounding my mother at the end was the paid staff caring for her. 

When we started looking for someone to "help" with mom, our big concern was getting the car keys away from her. Mom lived in the suburbs and the car was a lifeline to her everyday needs. To her credit she had started to self limit her driving by staying close to home but she was also having little mishaps with the car on a regular bases when she went out. One time she got hung up on a ramp in a local parking lot and the police had to be called to help get her car free. We learned of these minor accidents in dribs and drabs well after they occurred. There wasn't enough family that lived close enough to drive her around and the idea of taking a taxi seemed extravagant to her so we decided to hire someone to do the driving for her. 

The job description was simple. Drive mom to the grocery store and any other place she wanted to go a couple times a week. We were fortunate to find someone who was a nurse, a nutritionist and very friendly. From the beginning, my mom welcomed her and would even tell her friends that her children had "hired her a friend". Twice a week they would run mom's errand, have a ladies lunch out and then return home with leftovers for later. My mother didn't miss driving and truly enjoyed her weekly outings. 

As the months progressed my mom's health and mind started to fail, she needed more help. We naturally increased the hours of Mom's Friend, which was a painless and seamless transition for mom and us but was life changing for her. As I relay this story to you, I can't tell you at what point the shift occurred but the paid caregiver began to make decisions and take actions that should have been made by the family.

The decisions made and the actions taken were not done out of malice because she genuinely cared for my mom and as such took full ownership of her care. The result was mom's end of life journey was taking a toll on her too. Instead of relieving our stress by being a rested outside resource, she became another exhausted, emotional person we had to negotiate with during a difficult time. Towards the end, we were hiring staff to relieve our heavy hearted and weary paid caregiver. 

My message to you is threefold. First, a paid caregiver is called into solve a problem not replace family. We were so pleased that mom stopped driving without a struggle that we lost sight of the fact that Mom's Friend was not a friend but an employee. Keeping that distinction in place would have avoided a lot of discomfort for everyone later on in the journey. Next, if you are fortunate enough to find someone as conscientious as we did, remember that they are human beings. They need regular time off, sleep and meals. You need to make sure they are getting what they need even if they tell you "Oh, I'm fine" and resist taking time off. And third, remember, these are your parents. You know their values and their wishes. A paid caregiver's values and motivation may not be the same as the ones that ground your family. Keeping clear boundaries will help avoid confusion for all involved when end of life decisions are being made. 

Mom's Friend was an angel. She genuinely cared for my mother and wanted to make the end of her life as joyful and as productive as possible. I am grateful for her care and attention to my mother. The challenge to all families is how to balance and effectively manage paid care with the real need to have a kind human being caring for your aging parents. 




The Summer Day

by Christine

The Summer Day

Mary Oliver

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washer her face.
Now she snaps her wings open, and floats away:
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me. what is it your plan to do 
with your one wild and precious life?


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. 




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.



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. 


Week 6: Your Spouse


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.


Week 5: Mistakes Will Happen


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. 


Week 4: Regrets and Acceptance