Looking Back at Caring for my Mother by Margery Miller

This year has been one of tremendous change for me.

It started with the one year anniversary of my mother’s death.  For ten years after my father died I was her “person” responsible for her in her 80s and early 90s, making sure she was safe, cared for and loved.  That journey was a beautiful one.

As I’ve written before, my mother and I were not really close for most of my adult life.  My connection with my parents had grown into deep love and appreciation for who they were, but I have to admit part of me was still in “performance” mode — doing what I thought were the right things of a daughter.  For many years, I was the only one of 4 daughters living in the Dallas area near them, so I held many family dinners, invited them to my parties, and for the last several years of my dad’s life, made a concerted effort to drive the hour to their country home on Sundays to spend the afternoon.  The television was always on to some sports event, and I got used to just making it a Zen experience to sort of endure the droning voices of TV commentators, roars of avid fans, etc.

It taught me patience, it taught me the value of setting my needs aside, for the moment, and just being there for them.  I’m glad I did it.

After my father died in 2006, my mother’s health crashed in 2007, with a near-death experience, a medically induced coma, another 2 months in a rehab hospital and a decision on my part to bring her home.  I saw that she would not really recover if I moved her to a nursing home, so I set her up in my guest room.  The first 2 weeks were a form of hell mixed with laughter.  She didn’t sleep much, would call to me all hours of the night and day, and one morning ended up on the bathroom floor unable to get up.  We had to call the Fire Department, and 6 huge, burly men showed up to help.  The funny part was how it only took one of them to gently place two fingers, one under each arm, to lift her up.  It wasn’t that she couldn’t walk, she just wasn’t strong enough to stand up after she leaned over too far and ended up flat on the floor.

We laughed about that for years!  Coincidentally it was New Year’s morning.  That experience kicked us into a different mode, where I realized I needed to be much more firm with her, yet keep encouraging her to do things for herself at the same time.  Fortunately we had a great home heath nurse who would come every couple of days to change her wound-vac dressing (that’s another story) and she offered great advice on how I could manage the situation.

I resigned from my part-time consulting work in NYC and stayed home with her.

After 5 months of living with me, my mom was strong enough to live on her own and craved the social interaction that she was used to.  We found a great independent living situation two minutes from my house where she could have her own apartment yet take all meals in a dining room, play bridge, be a part of lots of senior social activities.  It was perfect.  She came to my house for holiday dinners, but mostly stayed there unless we had doctor, nail salon, hair cut, etc. appointments.

Until my mom slipped into mild dementia and Alzheimer’s in mid-2015, things went really well.  She ran the bridge group, she hosted the afternoon happy hours, participated in decorating the building for holidays.  She was in her element. One of the best and worst things was having both our retirement accounts embezzled by a financial person, which set us on a path of frugality and actually opened up a new understanding between me and my mother.  Not only did she not blame me for us getting involved with that person, she let me know that what mattered most to her was that I was still there, taking care of her.  I think it was the first time I felt the depth of her love for me.  We became much more honest with each other, more real.  We developed a wonderful friendship.

Until she couldn’t remember where to go, or what she was supposed to do next.

We tried to hire extra help at her community, but it just didn’t work well.  Sadly, by November 2016, we had to move her to an actual Assisted Living facility, where the majority of the residents had memory issues, and she could be safe, yet still have an apartment of her own.  For the next year or so, her main question was, “Why am I still here?”  She really didn’t understand why she had to keep living when her faculties were failing her.

Since her major health catastrophe of 2007, we had been sort of playing a game.  I had told her that we really didn’t want to do the hospital thing again, so when it came time for her to go, she needed to just close her eyes and not wake up.  We would sit together sometimes and practice.  After moving to assisted living, we practiced it a lot more.

I had to explain that I couldn’t kill her, that they would put me in jail!  We had that conversation many times….  She made me promise that if she got sick, we wouldn’t treat her, we would just let her go.

On January 3, 2017 she started with a severe cold and by the next day it had moved into pneumonia.  The assisted living center insisted she go to the emergency room, even though we had a DNR posted on her refrigerator.  I figured they didn’t want the liability.

At the hospital, my mom begged me not to let them treat her.  I asked the doctor to come in the room, told her, with my mom, that she didn’t want to fight the pneumonia.  He was young, kind and understanding.  He asked her clearly if that is what she wanted and she said yes.  He agreed to call in the Hospice coordinator for the hospital, and for the next few hours I met with the Social Worker, who arranged for hospice to start immediately.

We got her back in an ambulance and by then my sisters had started arriving.  We kept her on oxygen until the following night, January 5, when my sister got in from California.  With all 4 or us surrounding her, the hospice team stopped the oxygen.  She slipped into a deep sleep that night and only woke up a couple of times when her various grandchildren came to say goodbye.

My sisters sat vigil in her apartment, and I went home. Lida had come up from Houston, and I was still being Mom to Tori then, so I had lots of responsibilities at home. I felt like I had done everything I could to help my mother, and I spent a lot of the next 3 days sitting in my living room crocheting shawls for Tori and Jennifer, who also lived at our house.  It was busy work, I could do it with the TV on, and it kept me calm and present.

I went back and forth each day for a short time, saw my mother sleeping, made sure no one needed anything, and went back home.  My mom passed on the morning of January 9, 2017.  At her request, we donated her body to science and they came that afternoon and picked it up.

The next morning, we had an army of family at her apartment and completely dismantled it.  The furniture was sent to various family members, all of her clothes were sorted and given away, everything was cleared by that night.  Amazing that we could do it so quickly, but it happened!

I was numb, to some degree.  Relieved that it was over.  She really didn’t want to be here, and each day was difficult for her.  I’m so grateful it went somewhat to our plan, although I hadn’t ever quite imagined how it would be.

Now, almost 2 years later, I can see that her passing was a rite of passage for me.  I am still on my journey toward self-worth, and can feel that I have made great progress.  I appreciate myself for rising to the occasion and taking care of my mother.  I’m glad we became true friends those last 8 years, as it enabled me to be honest, forthright, yet still respectful of her and her values.  I even gladly mailed in her ballots for candidates I opposed, honoring her political beliefs.  We didn’t agree on some fundamental things, but it didn’t separate us.

I went through a lot of changes over these two years.  I went from being a caregiver, a mom to Tori and landlord to Jennifer to being completely free of entanglements.  My love of family and relationships has led me to be involved in many lives, and taught me a great deal.  And I am thrilled to say that this period, one of being completely alone and responsible only for myself, is feeling delicious.

I’m sharing this story because so many people are in the throes of elder care and its challenges.