Assisted Living

When my dad died it was the first big loss in our family.  He had AML – Acute Myeloid Leukemia.  He refused treatment.  The disease was advanced.  I don’t know how much pain he had been in prior to diagnosis, or how truly ill he had felt.  Somehow, innately, I think he knew how bad things were once a name had been given to his disease.  That was 14 years ago.  It was this time of year, when my sisters, brother-in-law and I took shifts caring him with the help of hospice.  Our mother was there too.  We did not expect her to engage in the physical part of taking care of daddy.  She cooked for him and petted him.

I just visited one of my sisters for three days. She lives six hours from here further south.  She and I often rode together to my parents home during the three months of our dad’s illness and subsequent death.  Sometimes it seems like yesterday.  The ride from my house to our parents took seven or eight hours.   We made it every other week for three months.

Ladies from our church would find out when I would be returning home from my parents house, during that awful time and have supper waiting for me and the family on the day of my return.  It is interesting how, at times memories are triggered.

It was tough to say goodbye to my dad.  Tougher to see my mother standing there at that house, alone, as we pulled out to return to our own home after the funeral.

I tried to imagine how she would function and I could not put myself in her place.  I had no point of reference.  I had a busy life with husband and children, friends, church and my art work.

When, two years later, our daughter was diagnosed with ALL – Acute Lymphoblastic Leukemia my world turned on its end.  Referencing my dad, I did not know if this was a death sentence for my daughter or not.  Everything changed overnight with the pronouncement of the diagnosis.  Two and a half years later, twelve chemotherapy agents, daily treatments for the first year and alternating daily or three-day-a-week treatments for the next year and a half was our life. One day, abruptly treatment was over.  She has stayed in remission for 12 years.

The ladies of the church came then too.  On the long days at the hospital I would return home with my sleeping daughter to find a meal waiting to be heated up.  Sometimes one of the ladies would accompany me on those long days when they did bone marrow biopsy and administered the methotrexate intrathecally.   For years and years I had some sort of identity associated with cancer and  those years of my daughter’s treatment.

There was so much activity associated with those days.  Coming and going and hovering over the people most affected.

My mother’s decline was not easy.  She lived in her own house for many years until dementia made it necessary to get her situated in an assisted living.  One after the other both of her hips a broke before she died.  I have tried to figure out why I don’t miss her more than I do, and I think it was because the woman who finally departed was so unlike the woman I had known for so many years.

Our son’s death was quick and almost too tidy.  Within 24 hours he was gone.  Within three months his sister had taken care of the details regarding his “estate.”

I have tried to compare it and contrast it with other things I have experienced and there is nothing with which to compare it.  I can look at pictures of my dad and I realize that I miss him.  I see my mother in pictures at various times in her life and miss her more at certain times in her life than others.   I miss my son every day.

It infuses the day sometimes and at times comes in the most benign circumstances. Riding home from my sisters house, I called my husband, my daughter and it seemed most natural that I should call my son.   We would have talked for a while.   I still have to be careful, dwelling on photos of him.

I am busy these days.  I fill up the hours with activities that are of value, if such a  thing as value is a real thing.   I evaluate the things of life through a different lens now and some things are very uncomfortable when confronted because I realize how ridiculously frivolous and empty they are.

My family, my sisters and nephews and nieces, my sister and brother-in-law have made an effort to continue to reach out to us. My friends at church and friends in the art community have stayed close to be the food on the table when we get home.  They are all the true value of life.

I am sure the frivolous will creep back in, if for no other reason because I so enjoyed the frivolous things with my son and still do with my daughter and husband.

We can’t live our lives in the shadow of the knowledge that everything we know will cease, whether it is because we cease to be or they do.  I don’t think I  have wasted any time spent with my family and friends.  It is all precious.

Assisted living.  I said my mother was put in assisted living, but I realize I have been there all along.   I live in assisted living and provide assistance for others living out there in the world.   If fortunate we are all there, assisting and being assisted.

So one more time for everyone who occupies this particular boat of having lost a child, I want to tell you how very sorry I am for your loss.   So very sorry.  I hope for you and for all of us in this place that we find some joyful memory today and embrace it even if it brings the inevitable tears.  Peace.

About pathfinder

Artist, Writer, Walking wounded.
This entry was posted in Coping with the Death of a Child, Death, Family, Friends and tagged , , , , . Bookmark the permalink.

3 Responses to Assisted Living

  1. Debbie Fisher says:

    My daughter was diagnosed with AML on 9/27/11. She turned 30 in March, got married at the beginning of July, and the AML was diagnosed because of the CBC done for her pregnancy. She was admitted immediately to the hospital. Her husband slept in her room every night. Her pregnancy was terminated 3 days later, & 1st round of 7 days of the most intensive chemo the day after that. Bone marrow biopsy showed she still had the leukemia. 2nd round of 6 days of the most intensive chemo did put the leukemia in remission. She lost all her beautiful brown hair, battled c-diff, a fungal infection in her blood, and fungal pneumonia. She wanted to go home for Christmas. She got over the c-diff and the fungal infection in her blood, but still had the fungal pneumonia. She was scheduled to go home on December 21st. Her husband said she began to cough after midnight (not unusual with pneumonia), but by the time he got to her bedside she had hemorrhaged. They were unable to revive her. I’m still in disbelief. She lived in Chicago and I live in Arizona. I don’t know who I am, or how I manage to get through the day. Still waiting for autopsy results, which for some odd reason I think is going to make me feel better. I don’t know what my purpose in life is anymore. This Thursday, I start a weekly meeting for 6 weeks with my church’s grief & bereavement group. I hope that will help. I am lucky to have made it to the 1st 2 meetings of the Compassionate Friends in my area. Every day is a challenge.

    • pathfinder says:

      Debbie, I am so sorry. It is so new for you. It makes no sense. I wish I could say that it does but not so far for me. It has been since July 2nd 2011 for us when our son died and the days continue to be challenging. If you need answers from the autopsy, then you just need answers. There are still a million questions waiting to be answered for all of us. I am glad you found the compassionate friends group. I have no chapter close by so I go online to the support groups. I have not found anything that helps all the time. Some things help sometimes and so I just take that when it comes. Grief in some form is simply a part of my life now. Wish it were not so, for you or I. Peace.

    • Debbie, sometimes words seem so inadequate, but I just wanted to let you know how sorry I am your precious daughter died…and that I care…where words are failing me, my heart responds to your loss. My thoughts and prayers are with you.

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