Goodbye to 2016

A year is only defined by the changing seasons and numbers on a calendar, but God must have known that we needed to start things over once in a while.   As a teacher the end of August brought fresh hope for a better school year than the last. We had packed up the old year in all of our classrooms and then in two months time reopened them in anticipation. As 2016 closes I am happy to look on the number 2017 as a new start in my life even though it is only one day passing to the next.

In the past two years I have lost my father and my mother. They lived full and long lives, but sometimes that makes their absence even more painful. They were the two people in the world who were the happiest to see me when I walked through their door. No one will love me like that again. I know that now. It is a life-changing realization.

I spent most of this year dealing with their home and the possessions and memories of over sixty years—the only place that was truly home for me.  I had to empty it of every tangible item and relive my life and theirs along with each discovery.  I read their love letters. I found all my cards and letters to them. It was at once excruciating and also comforting.  I sorrowfully had to sell the home to a new young family—only the second family to ever live there. I feel unnaturally attached to them as I dream about their little boys playing in the same yard I did.

One year ago today my mother was in a rehabilitation facility—a place I despise with all my heart for its loneliness, boredom and isolation. She had clearly lost her will to live since my father had died one year before. To remember last Christmas is reliving a nightmare.  In two weeks time she would have a massive stroke and a week after that we would bring her home and wait for six days for her to die in her living room, not really sure if she knew she was there or not. It was not a peaceful ending to a well-lived life. 

All the formalities are complete; the graves, the memorial services, the sale of the house, the bills, the matters of the estate. Suddenly, I am left with a life bereft of the caregiving responsibilities. But not really....

In the month of May a new person was born to fill my heart with love. My second grandson. Two beloveds are gone and two have come from heaven to bring light back into my life. This is life. So in 2017 I will embrace the new hope that God has sent me and I will honor and treasure the losses of the past as we all must do.

Happy New Year

The Remnants of Life

February 10, 2016

I spent the day going through the remnants of my parents’ lives.  Every bill and check with their names, every list and note in their handwriting, sixty years of photos and piles and piles of clothes—that is all that is left of the two people I loved every day of my life. 

I lost them both within fourteen months and I am grieving for the set of two, the unconditional love that no one on earth will ever have for me again, the smiles every time I came into their presence. That love and that joy is known to me because I have it for my own children. It is irreplaceable and eternal.

They lived their last days in the home they built sixty-two years ago, the house I came to from the hospital in the beginning of my life. I will grieve that house too—the place that has always been home no matter where life took me. When life brought upheaval and fear I could walk in that door and find solace. Now it is just empty space. No one will come home there ever again because they are gone. 

As the day wore on I became enveloped in their presence. I discovered that the mother I thought was not very sentimental kept every note, card and letter I ever wrote to her. Copies of every poem and article I wrote as an adult were kept in labeled envelopes.  An ancient box was hidden with the memorabilia of her wedding and honeymoon in 1953.  

My dad’s bowling and golf scores pads, my mom’s inspiration for all her artwork, Dad’s meticulous checkbooks dating from 1980, cards and letters saved from friends and relatives, scrapbooks and photo albums I made for them, cards and artwork from their grandchildren, fifty years worth of manuals and warranties from everything they ever owned—it is overwhelming. It is all that a life is made up of. 

All of it is precious and none of it matters at the same time. I felt their presence so strongly today that it is all I need for now. So many memories and relationships fade with time, but I do not think the people that created and loved you from the day of your birth can ever fade away. We are one in the same.

I bring home boxes of photos and tangible items that will always remind me of them, but I think about my own children having to go through all of that and more someday and I wonder if it really matters at all. 

Never have I sensed the presence of love as strongly and deeply as I did today. Amidst my sorrow and tears I have had a revelation of the eternal that I have never experienced before. My mother and father were there with me today just as they have been every day of my life.  That is not something I am creating to comfort myself—it is something I experienced deep in my soul. 

What is a Living Will?

My dear mother had a massive stroke five days ago. The only ability she has is to open her eyes. Otherwise she is trapped in her body, unable to express herself in any way, and we have no way of knowing the extent of her suffering.  She looks at us as we cry and speak of our love, but are we just adding to her pain? As a mother I know that the worst thing in life is to see your children suffer.

My mother was my accompanist on the piano as I sang from the time I entered my first solo and ensemble contest at age 14, up until she sent me a resignation letter about thirty years later. She had arthritis and was afraid she would make a mistake as I sang in church. (She never made nearly as many mistakes as I did).  About 15 years ago I recorded a CD for my parents for Christmas. So yesterday I played the CD and sang along for her. Her eyes were open and focused on me for a solid half hour. She is unable to make a facial expression, but her attention allowed me to communicate with her in some small way.

She is in ICU attached to multiple IV's that contain medications, nutrition and hydration. There are inflatable wraps around her legs for circulation. There are boots on her feet to prevent sores. There are pillow and  pads surrounding her to keep her in place because her body randomly moves in instinctive or reactive movements.  Her right side is paralyzed and still, but her left arms flies up in distressed movements as she seems to try to remove the paraphernalia attached to her body. There is a feeding tube in her nose because she cannot swallow.

She pulled the feeding tube out last night. The feeding tube is keeping her alive. Is she communicating with us?

My mom has a living will. It says that if she in unconscious she wants no life-sustaining measures, but she is not unconscious.  It says that if she in a terminal condition she wants no life-sustaining measures. But is a massive stroke a terminal condition? One doctor says yes because her body is shutting down and it may be a matter of hours or days. But another doctor walks in the room and says it is "in the realm of possibility" that she could get better.  What is better? Is it being able to keep her eyes open all day? Is it being able to eat and speak again?  No one knows. Every specialist has a different opinion and perspective.  Is a feeding tube even considered a life-sustaining measure if she is still breathing on her own?

So if you have a living will maybe it needs to be much more specific.  What if you are permanently non-communicative?  What if you can never squeeze a hand or blink an eye again.  Everything we do all day long as a humans is communicate our thoughts, feelings, and desires. Are you living when that is over?

It is too late to ask my mom. We thought everything was in place but life has shown us otherwise.

The Gift of Stressful Times

These past two years have been heartbreaking, revelatory and soul-changing.  It has also been stressful, exhausting and confusing.

I have been through several heart-wrenching and life changing times in my own life - divorce, depression, difficult relationships, stressful work situations - and yet I have discovered that a painful experience in your own life is nothing like watching someone you love going through trials.

Even after so much turmoil in my own emotional life I have discovered that being a daily participant in the end-of-life struggles of my beloved parents has been much more stressful.

I keep asking myself why I am not handling this better. Why it has completely consumed me and I cannot separate myself from what they are going through even when I am not with them.  My life revolves around their needs, physical and emotional.

The natural reaction seems to be to try to keep something of your own life intact.  Try to find stress relievers, a little joy amidst the sorrow.  That in itself is a huge effort and one that constantly gets slapped down as needs change, as unexpected crises arise.  You can never truly get away from your grief and concerns.

I began canceling out my own life because I couldn’t be counted on to fulfill any commitments. I did it willingly and said to myself - this is my life now and it’s ok.  I am grateful every day that I am now retired and yet that sense of constantly being torn between my life and theirs has not changed.

I feel like I am lost, unfocused and starting to slide into a depression.  Depression, I learned many years ago, happens when something is too much for someone to handle.

But this can’t be too much for me. I have no choice but to care for my mother now. I am extremely fortunate to have one other sibling to share the care-taking. How can it be too much when I am so willing to devote myself to this right now?

But on those days when I am off-duty I flounder. I still feel sad. I miss my father and want him back to help us through this.  We didn’t really have a chance to grieve his loss before we were consumed by my mother’s needs.

The stress comes not from chores and visits or from advocating for her welfare everywhere we go - but for making choices for someone else’s life. It is heartbreaking telling her she is once again going to the hospital or the rehab facility.  We spend a lot of time encouraging her and the rest of the time agonizing over how we will deal with the next need, the next change in plans.

There is not enough money to provide 24 hour a day home care and yet, that is what she needs right now.  Even though my father planned well for these years the money is quickly dwindling and we must make decisions about that as well. 

I believe what is needed now is to embrace this experience for everything that it is.  To stop the battle between her life and ours. Some of the effort is in trying to avoid the most difficult situations. Times of indignity and humiliation, times when nothing goes as planned.  

I have a praying family and I pray as well. Yet, one of my biggest life lessons has been that God does not make anything easier no matter how many prayers are sent up for you.  What will happen in this world will happen.  He does not make the elderly young again. He does not make care-taking pleasant. He does not heal the body when it is worn out. He does not follow our well thought out plans, or even give us what we are so sure we need ( which is usually to make it easier).

I have thought a great deal about prayer in these years because so many people say they are praying for you.  Even in my life-long faith I began to wonder what good prayer is when the situation never gets better or even clearer.  What exactly are we praying for?  We can pray all we want for someone to be healed, but if they have a life-threatening illness they will not heal. They will die anyway.

I have honestly not felt uplifted by prayer at this time in my life even though I have at other times. So what am I missing?  I am not blaming God for anything. This is life on this Earth and sometimes I long for heaven myself - something better than this.  Why is the journey to get there so difficult? Why do we never stop grieving those we have lost?

Then I think about how I have changed as a human being during this process. How much I have accepted, how much I actually have handled. That doesn’t mean there haven’t been tears (buckets-full)  or anger or frustration - but we have made it through so far.

We kept our Dad in his home until the end - and that was the plan. We spent two beautiful days surrounding him with love.  My mother knows she is loved and cared for and that we will do whatever we need to to help her through this transition in her life.  My own children are seeing and experiencing these years, which is something I never saw in terms of my own grandparents - and maybe they will do better than I have in the future.  I was given a beautiful, joyful grandson in the midst of the sorrow to brighten every moment I am with him.  He was and is a gift beyond measure and has probably saved me from true desperation.

I am more compassionate to others that have gone through these same trials (and most people have or will at some point since so many people are living longer). Maybe in the future I will be able to help someone else through the same thing.  I have a husband and friends who listen and care and when I am at the end of my rope. I have learned that my life is not really mine after all. Surrendering to what is has been an on-going learning experience for me in life. Service to others is something that is part of a rich and full life.  Compassion is a divine goal. Love is always the answer. 

What I Have Learned From Caregiving

About two years ago both of my parents became ill at the same time and were not able to take care of themselves, their home or their finances.  After some painful confrontations they slowly allowed us to know more about their formerly private lives.  As the months went on they were in and out of hospitals and rehabilitation facilities - sometimes in two different places at once and they needed knowledgeable advocates everywhere they went.

It is easy to step in and do laundry, shopping, cleaning, cooking and transporting. But caregiving is much more than that and involves a lot of personal sacrifice. At first it is a shock. Suddenly everything has changed for all the people involved and there is no choice but to do what is needed whether you think you have the time or not.  There are also events in which you see and do very unpleasant things you never thought you would.

One of the most stressful parts is the responsibility of making decisions for my parents as well as navigating the medical system for them.  If someone is not present when a loved one comes to a hospital there are many things that can go wrong.  We have had to fight battles to get them what they have needed over the past two years. We have fought to change doctors and medications and whether to send them off to yet another facility. I often ask myself what happens to someone who has no one to do that for them.

There have been numerous calls in the middle of the night that someone has fallen and when I got there I still had to decide whether he or she was hurt and whether to call 911 and put them through the ordeal of an ambulance and yet another hospital stay. It is just horrible to see your frightened mother or father loaded into an ambulance. You somehow feel responsible for their suffering in those situations.

There are so many moments that remind me of caring for a young child - the responsibility, the worries, the need for respite sometimes too.  But with adults you are dealing with their emotions, pride and dignity as well. There have been constant battles over for the best medical and financial decisions for them. Doctors do not tell you what to do, but give you options and it is often the caregiver's decision.  Did I make the right one?  This is a tough position to be in when it is your parent.

Everyone has suggestions for you but everything you put in place takes time and often the problem is immediate. We have hired helpers but they have often been useless or caused more problems. We have had them enrolled in various programs for home health care which is always a long intake process and then suddenly they are dismissed and we are back to square one.  We have sometimes decided to go against the doctor's suggestion for rehab and brought them home to care for them ourselves.

But what have I learned from all this?  I have learned that there is nothing I have to do that is more important than being there for my parents. I slowly gave up all my activities because I so often had to miss them. I stopped making commitments for the same reason.  Have I survived it? Of course.  I have learned to do what is needed when it is needed, not on my own schedule.  I'm a pretty routine kind of person so this was not easy for me at first.

I guess flexibility is the word.  I start the day now knowing that there is nothing that can happen that I cannot handle. In the beginning it was constant stress at the unknown and distress at missing work or other things I had planned. I have had to remember that I am not the one suffering - they are.  I guess I'm just saying it's made me a better person and I wouldn't have it any other way.

My sister and I vowed to keep our parents in their beloved home of 61 years if at all possible. We  sacrificed to make that happen for my father who passed away in November. He was there until his last two days at the hospital (and that decision was made by hospice). He never knew he had left home.  Now we are trying desperately to do the same for my mother.

We will never regret that decision or anything else.

Life Has Changed

Yesterday I sang a solo in church. It is one I have sung many times - Come Unto Him from Messiah.  But this time was like no other.

I started singing church solos at age 14. I cannot even count how many - and my dad was my biggest fan. Always sitting a few rows back to my left.  He always wanted to sit where he could see my mom and I next to each other in the choir loft. Mom and I sat in the choir loft of two churches for almost 40 years together.  (The various directors somehow knew better than to try to separate us.)

When I am asked to sing, I do, because it is my offering. It is something I can do that sometimes touches people's hearts.  There have been many times I wanted to quit because I didn't feel my voice was dependable or good enough. But even the times that I felt awful about my performance, someone would be moved by it.  I'm not a professional, just an untrained soprano. It's a very humble offering, believe me.

I learned many years ago to never look at my dad while singing because there were often tears streaming down his face. Yesterday my dad was not sitting there and my mom was not either because of poor health.  It didn't really hit me until I sat down after the song, and then I was overwhelmed with grief and loss and the confusion of change.

My dad was supportive and proud of everything I ever did. I know I am just now experiencing what so many of you already have in this life.  I was more than blessed to have him here for his 91 years. Parents (and maybe siblings) are the only people you have known every day of your life so, even though I have lost friends and other relatives, this is much different.

I know my Dad is ok.  I believe in heaven and this is what I believe:
Heaven is the place, the everlasting life, where we receive everything we yearned for here on earth. As human beings we spend our lives searching for unconditional love, for perfect peace, for unknowable joy and for release from the cares of this troubled world.  This is the definition of heaven to me.  All will be known. All will be understood. All will be the peace that passes understanding. It will be nothing like being here - where we are left to grieve and wonder and wait.

Life Happens

I doubt that anyone looks at this blog any longer.  I don't blame you.  Something I once loved and thought about everyday has gotten lost in the circumstances of life.

What has happened since March 9?
Starting on March 16th BOTH of my parents were hospitalized a number of times and both spent time in rehabilitation facilities. Then my first grandchild was born - a beautiful boy!  The end-of-the-school-year craziness ensued.  My daughter's wedding is days away.

Emotional roller coasters don't leave much room for thoughtful blog posts.  I had been winding down anyway.  I miss you COEXIST. I hope I'll be back someday soon. Meanwhile, having a beloved mother and father and new little person to love and care for is a blessing everyday.