Loving a Mother with Dementia

Today I left the nursing home again in tears.  It seems to be happening more and more lately.  My daily hourly visit with my mother was once again filled with a constant tirade about how awful her life is.  She talked about the friends she used to have, what her life used to be like, and how everything is now changed.  She believes some of the residents think they are special and she is not, so they get everything they want but she doesn’t. She especially hates her roommate.  She swears at her using language I never heard her say before.  The anger in her voice is new to me in the last few years. When she talks nonstop about all the terrible things in the nursing home, my stomach begins to churn, something inside of me changes, and I want to flee. This is not the mother I know.

I read a lot of articles about dementia and Alzheimer’s.  I read how some women just let go of the mother they used to know and accept this new version.  But this new version of my mother is angry.  She is not making the most of her days and is not willing to.  She is wrong about nearly everything that is happening around her, but I can’t tell her that.  I used to.  She would get furious with me and call me names, tell me what a terrible daughter I am, and I would flee from the room in tears.

Today when I wheeled her into the community room to hear her favorite pianist play for the residents, she created a scene about where she would sit, claiming she couldn’t sit in certain places because the special ones were there.  One of her former roommates, a woman she had been particularly vicious to, offered to move so she could sit in her place.  It touched me so, I patted her softly on the shoulder in appreciation before leaving the room in tears.

If someone were to become acquainted with my mother the way she is now, they would consider her an angry, mean-spirited woman and would not have anything to do with her.  The nurses and aides in the nursing home see her at her worst and still they comfort her and treat her well.  I don’t know if I could do the same.

After I left today, I came home to play the piano, something that used to calm me when I was upset, but that, like other previous activities, was too much of a challenge.  The keys refused to cooperate.  I don’t write much anymore.  I don’t make greeting cards for cancer survivors like I used to.  I sometimes wonder at those times when I can’t do the things I used to do if I am becoming like my mother who used to be able to cook and read and knit and sew and play the organ.  Could I be in the early stages of dementia?  Will I soon find myself in a nursing home sitting in a wheelchair staring out the window lost in the past?

My husband assures me it’s not so.  I am just distraught today, he claims.  I keep struggling with the piano keys.  I find some sheet music that was my mother’s.  I begin to play her favorite tunes and my fingers begin to strike most of the correct keys.  I find “Could I Have This Dance?”, my parents’ favorite song, and once again I am crying for what is no more.  The mother I knew is gone, but the mother I love is still there, in spite of the anger and the delusions.  On her better days, we talk about her grandchildren and great-grandchildren.  I share news with her of the silly things her great-granddaughters do every day.  I keep talking about family members, realizing that most of the time she does not know for sure who I am talking about.

My mother has lost a lot.  It scares me to think that I may have lost my ability to write or to play music or to be creative, the part of me that is the very essence of my being.  Without it, I am afraid that I will be just a shell of a person moving through my days doing inconsequential things until I reach the point where there won’t even be inconsequential things any more.


St. Patrick’s Day: Morning Joy, Afternoon Panic

St. Patrick’s Day:  Morning Joy, Afternoon Panic

Even though I am partly Irish, St. Patrick’s Day is usually low-key for me.  I don’t frequent bars or drink, although I do love Irish music.  My plan was to watch some Sunday morning television and then visit my mother at the nursing home.

My favorite show to watch is CBS Sunday Morning, mainly just the last five minutes, however, when a nature video is shown.  It is always a secret shot of nature, like someone spying on the wonders of the lives of birds or buffalo or deer.  There is quiet except for the natural sounds of the animals or rushing water or the cries of gulls.  Yesterday the video was of porcupines.  I never thought of porcupines as particularly cute, but in their natural environment as they munched on hickory berries, they were adorable.  Close ups showed the mouths, with their protruding front teeth, munching on berries while emitting soft moaning sounds of pleasure.  One porcupine snuffled around in the snow, pulling up berries from underneath and placidly munching while seemingly talking to the berries.  Another porcupine was up in a tree, pulling the berries off the branches.  These few moments that connect me to scenes in nature I would never experience by myself always bring me a sense of peace.

After lunch, I went up to the nursing home as usual.  My husband, who sometimes goes with me, stayed home to cook corned beef and cabbage.  When I walked onto the floor where my mother’s room is, the nurse stopped me.  She told me they had just called in the rapid response team for my mother who appeared to have had a seizure, her second one in a few weeks.  She told me she had a pulse but was unresponsive.  I couldn’t process the words.  Another nurse escorted me to a small room off the dining room to wait for the response team to continue to work on my mother.  At that point I was convinced my mother would not live.  Then she was whisked off to the emergency room in the hospital.  (The nursing home is attached to the hospital.)  Once again she went through a series of tests.  As the minutes went by, my mother returned to the living.  Oxygen restored her breathing and her blood pressure began to go down.  She could move and speak and seemed to have strength in her arms and legs.  Over the course of the next four hours, she gradually returned to her normal self.  The tests did not show what had happened and she was returned to her room in the nursing home.

Today I went up to see her and spent more time than usual.  I brought her a cup of coffee and we went in to the dining room to enjoy the DJ Sal sing and play music for the residents of the nursing home.  Fifteen residents sat around tables in their wheelchairs, some sleeping, some staring, some singing along and laughing at Sal’s jokes.  He played and sang Irish songs and then moved on to country and pop songs of the past.

One resident, a prominent local surgeon dealing with Alzheimer’s, loved the music.  He couldn’t speak well but he sure could sing.  He sang along with “Danny Boy” and swung his arms to the music.  At one point he wheeled himself over to me, took my hand, and kissed it.  I told him I liked his sweater, a bright orange, and he told me in slow speech that he liked it too.  I said it was my favorite color and he said then he would wear it tomorrow.

All the time I sat at my mother’s side, thinking how different today was from yesterday when I feared the worst and expected to lose her at any minute.  Today she sat quietly, laughing at times, smiling, clearly enjoying the music.  Sal is her favorite.

Sitting in the dining room with the residents, these men and women who are now my mother’s acquaintances, who I now know by name, people who once had active, busy lives, jobs, hobbies and activities and now sat in their wheel chairs listening to the joys of music, an overwhelming sadness came over me.  I kept glancing at my mother, loving her, and wondering how I could ever exist without her.  It comforted me to sit so close to her, to touch her shoulder, to laugh with her, to feel like she was still there if I needed her.  And I did.

There was joy in the dining room of the nursing home today.  The only tears were mine.