Another Mother’s Day in the Nursing Home

My mother was admitted to the nursing home three years ago after spending a year in and out of the hospital. She is in fairly good health this year in spite of advancing dementia. At 92, she goes to activities, enjoys the music programs, has made a few friends, and is well cared for in spite of daily complaints. Now that spring has arrived, we sit outside during my daily visits and enjoy the sunshine and the beauty of blossoming trees and flowers.

My husband and I spent two months in Arizona this year visiting my daughter and her newly adopted daughter. While we were there, my mother’s behavior radically changed, most likely to an untreated urinary tract infection. She never did like her roommate, delusions getting the best of their relationship, but one day she got upset with her and kicked her. The Department of Health was notified and laws required her to be removed from her room and put in a private room. She went to pieces. She believed I had abandoned her and she had done nothing wrong to deserve this. She was angry at everyone, especially me. I considered coming home, but a psychologist was called in and she worked with her to calm her down and reassure her that I was coming home, giving her a specific date. The staff at the nursing home had given me some poor advice. They recommended at first that I not tell her I was gong away and then I should not tell her how long I was going to be gone. That was bad advice. When I returned, she had settled into her room. I decorated it for her, she made friends with the woman across the hall, and she is now content.

This Mother’s Day I will bring her lunch since I can no longer safely take her out to eat. She needs only soft foods, so I will make her favorite potato salad and strawberry shortcake and sit outside with her for a while. I know I am lucky to still have a mother on this Mother’s Day, even though in some ways, she is not the mother I used to know. Times change as we age and maybe sadness is an emotion that just increases as years pass. I don’t know how many more years I will be able to spend with my mother on Mother’s Day. She is still strong and physically healthier than many of the other residents in the nursing home but not as strong mentally as many others. Words elude her and delusions continue. This Mother’s Day is also the date my father died. She won’t remember that and I won’t mention it. After I visit with her, I’ll go visit my father in the cemetery. I’ll tell him how well she is doing. I’ll tell him I feel lucky to still have her. I’ll tell him how much I miss him every day. I’ll put some roses on his grave, my parents’ favorite flowers, and say good-by once again.

Cruel Words Spoken in a Nursing Home

When I was a child, music was always a part of my life. My sister and I were given piano lessons, my father played the violin, and my mother played both the piano and the violin. On Sundays we would all gather around the piano, my sister beside me on the piano bench and my parents standing side by side near us playing their violins.

One of my favorite songs was “Beyond the Sunset,” actually a rather sad song about dying but supported by an element of faith in God and the belief that there is something beyond this life.

Today I played the song when I returned from a visit with my mother in the nursing home. She has been in a depressed, feeling-sorry-for- herself mood for several days, complaining that no one talks to her or takes care of her or believes that she is important. I do my best with daily visits but it’s never enough. We have had bad moments before when she is like this, but today she broke my heart.

She accused me first of being late to visit her (I was finishing up with a load of laundry and arrived ten minutes after my usual time) and then blamed me for her bad mood and her refusal to participate in activities there. Then she told me (in what words she could gather) that it was my fault she was in there. I put her there, she accused me. I didn’t help her when she had her stroke, in fact it was my fault she had the stroke, and I wasn’t taking her out anywhere for rides. (She is not capable of getting into and out of a car without the strong possibility of a fall and I’m not strong enough to hold her. ) She actually told me she wanted me to suffer as much as she is suffering. The words were harsh and kept coming on stronger and stronger. I tried to leave and she grabbed me and wouldn’t let me go, the cruel words continuing. I broke free and left the room in sobs.

I know she has dementia. I know the staff will explain to me that she can’t help it. But this is a mother I have sacrificed everything for, including time I want to spend with my children and grandchildren in California and Arizona. I don’t think my mother ever loved me. I don’t remember being held or praised or made to feel that I mattered to her. And so now that she has dementia, her mental filter has been removed and she is free to say to me whatever she has wanted to say for years.

I hope I never tell my children that I want them to suffer. I hope I never accuse my children of not loving me. I hope I never make my children feel like they aren’t doing enough for me. I hope if I am ever in a nursing home, I try to make the most of it and let my children live their lives to the fullest because life is far too fragile and too short to spend being mean to another human being, especially to someone who loves you beyond words.

The piano is my refuge. The piano is my saving grace. When I got home and found the sheet music to “Beyond the Sunset,” I remembered those moments when I was a child and I had my sister and my father and my mother with me and we were a family. The song is a sad song for sure, but it makes me want to believe that somewhere above me in some other realm, my father and my sister understand the pain I am going through and will try to help me be strong enough to face whatever comes next for me and for my mother.

Another Mother’s Day in the Nursing Home

I know I am lucky to still have my mother. I am lucky to be able to spend Mother’s Day with her again this year. I plan to bring her some of her favorite foods—potato salad and strawberry shortcake, using her recipes to make them. It’s a warm day, so we’ll be able to sit outside for a while, watching spring arrive, listening for the songs of birds she loves and no longer gets to hear very often.

For her 85th birthday, I threw her a large family party in the community room of the senior housing complex where she used to live. We had a great buffet, played her favorite music, gave her gifts, and enjoyed being together as a family, a rare event lately.  The day after the party, we took her to Ogunquit, Maine, a favorite place for both of my parents years ago. She enjoyed everything, and in late afternoon, she would take a glass of wine, sit in a lounge chair on the knoll at the edge of a cliff overlooking the ocean, and totally relax. I am so glad we had that time together before all memories began to leave her, like leaves falling from the trees in October.

Today at age 91, she no longer has memories of family or the life she had with my father in Florida. She confuses her grandchildren and great-grandchildren. She doesn’t remember her nieces, one of whom she took in along with her small child to save her from an abusive husband.  Her niece remembers her kindness, and many others do also. But now she is angry and at times mean-spirited due to her dementia. She can’t help it, but it is in strong contrast to the mother I used to have, the one who always thought of others, baking for them, helping them when they needed it, consoling and supporting her daughters during their fight against breast cancer. Today the mother I knew is gone. The love she had for others has been replaced by anger, fear, and delusions.

I’ve been thinking today about the three people who died in the hot air balloon when it caught fire in Virginia. I heard the stories from bystanders who told how they heard screams and cries of those who suddenly knew they were about to die. How awful it must be to know death is coming unexpectedly. Is that really different, I wonder, from the slow, agonizing, painful death from cancer, knowing it is coming but unable to hurry it up to end the suffering? Is it really different from the slow death from dementia, the loss of memory and function as the brain slowly dies. Is that different from another kind of death where hopes and dreams are gone, leaving one with a struggle each day for mere existence, a death where it’s not the brain that’s dying. It’s the heart.

Carolers on Horseback

carolersonhorseback2 carolersonhorseback1

Many moments bring on sadness at Christmas time, but carolers on horseback should not be one of them.  Saturday morning twelve or more horses decorated in their Christmas finery—Christmas hats over their ears, garlands wrapped around their reins, ribbons braided into their tails—lined up in front of the floor-to-ceiling windows at the nursing home.  Behind the windows twenty or more of the residents sat in their wheelchairs to watch and listen.  Some wore Santa hats, some held on to rings of jingle bells, and some just held in their hands songbooks they couldn’t read or understand.  My mother was one of them.  She sat locked into her angry delusions, quiet and unmoving.  One resident cried softly.  Another slept in her chair the entire time.  Others stared out at the horses.  A few sang along with the singer outside the windows who was accompanied by the pianist inside.

The event was the same as the previous year except for more horses participating and the freezing  eight degree weather.  But it was not the same for my mother or for me.  The carols made me cry. The array of wheelchairs made me sad as I imagined the kinds of lives once lived by their occupants.  My loving, generous mother who baked cookies and breads for Christmas, who knitted and crocheted blankets for the needy, who laughed and played the organ, and shopped with me for gifts, was gone, replaced by someone I don’t really know any more, someone capable of unspeakably hurtful accusations that cut to the center of my heart and remain there for days.

As I get older, I find myself reminiscing often about the Christmases of my past—both my childhood and young adulthood when my daughters were small and magic existed.  Gifts were simple, often handmade.  There was cocoa and cookies and carols.  The family gathered at my grandparents’ house where we sat in the living room in a circle and laughed at our crazy gifts.  One year my sister crocheted Rudolph noses for all of us.  We put them on and wore them through gift giving and the light supper of sandwiches and salads my grandmother made.  Another year my sister crocheted Santa hats and wrote funny nicknames on them with glitter glue.  We all wore them, my grandfather dancing around the room while we all laughed.  My grandparents are gone.  My father is gone.  My sister is gone.  The noses and hats are tucked in between tissue paper in a box of ornaments I can’t bear to look at.

This Christmas for the first time in over forty years, my husband and I will be alone on Christmas Eve and Christmas day.  We will go to church Christmas Eve and visit my mother.  On Christmas Day we will take her some gifts and then go out to dinner without her.  I’m not feeling sorry for myself because I know how lucky I really am to have her and my daughters and granddaughters.  So many people have lost loved ones this past year.  There has been so much tragedy and violence that it is more essential than ever to find joy in some way during the holidays.  Otherwise, grief would win out over happiness.

My youngest daughter was sad recently, remembering those Christmases when we were all together doing crazy things.  Her task now is to create her own joyous times with her children so they have those same happy memories.  I was lucky to have her, her husband, and my granddaughters with me on Thanksgiving.  My oldest daughter, now living in Arizona, will visit this coming weekend, but she too will be spending Christmas Eve and Christmas Day alone.  Still, I put up the tree and decorated it.  I am baking cookies and Christmas breads using my mother’s recipes.  And I will find a way to feel some sense of peace this year.

During those quiet, dark moments in the night when sleep refuses to come, I try to replace that image of the carolers on horseback singing to nursing home residents with dementia, my mother among them, with those Christmas Eves in my grandparents’ living room when my sister handed out the Rudolph noses or the Santa hats and we laughed together, and Christmas was still magical for both the young and the old.

August Birthdays in the Nursing Home

The air has changed, and the light.  A  softness has settled around the edges of the trees, the striking colors of summer gardens now muted, and a thin veil covers the brilliance of the summer heat.  I’ve driven this road nearly daily for two years now but always with sadness.  Today as summer draws to an end, the sadness is heavier.

It’s the day the nursing home is celebrating the birthdays of the residents born in August, three this time.  DJ Sal will play his music, there will be cake and singing, and a kind of simple joy in the room.

My mother has turned 91.  I hardly know who she is any more.  When we first enter the dining room for the party, I sit at the table across from her, but then the activity director brings her birthday balloon from her room and ties it to the back of her chair.  Then she moves her to the center of the room where she sits next to a woman who is fairly new to the nursing home and “the doc”, a well-known area surgeon who has Alzheimer’s and is nearly always happy.  His wife sits next to him and holds his hand at times, and his son and his wife come later.  The doc’s wife has brought in cake for everyone.  All three celebrating a birthday are lined up together in their wheelchairs, the balloons bobbing from the backs of their chairs.

Now I am sitting at the table alone.  After every few songs, my mother looks over at me to see if I’m still there.  I can’t leave, even if I want to.  It’s the way she looks at me, the innocence, the face that seems the same to me but hides a mind I cannot understand.  The activity assistant loves to dance, and so she goes around holding on to the hands of the birthday celebrants, singing to them as they laugh and move with her.

Then Sal puts on the birthday song and everyone begins to sing.  I don’t know why, but I am suddenly sobbing.  Not just tearing up.  Not just feeling a little sad amid the happiness.  My chest hurts.  I turn away from everyone in the dining room and end up facing the window in the hall where the nurses and aides are watching the entertainment.  My sadness is not something I can hide.

Why can’t I be happy?  Why can’t I just be grateful that I have had my mother for one more year?  Maybe it’s because for me there is always a sadness that lingers beneath the surface of happy.  Maybe it’s because the mother who was so active and giving, who baked and cooked and sewed and knit for others, who made gifts every year for us, who made chicken soup for my sister and for me when we were fighting cancer, who took care of the residents in the senior apartments where she lived alone after my father died, this mother whose heart was huge and love was strong, is slowly slipping away from me.   Her life has narrowed.  Her knowledge is less.   Sometimes she knows who she used to be and is sad, realizing that person is gone, and I know that soon her loss will be unremembered.

Seeing all the residents together in the dining room depresses me.  The configuration of wheel chairs hits me in the gut, the losses so great they permeate the air and settle down around me.  Sometimes I feel a little panicky, wondering when the day will come when I will be like them, hair thin and kinky, dressed in sweat pants and knit shirt, slumped over and half asleep, listening to someone try to lighten my mood with love songs from the fifties and sixties.  What kind of lives did these men and women once have, I wonder.  Each one’s life is now a secret that can’t be shared, their dignity a frail filament barely holding them together, today’s events not even tomorrow’s memory.

 As Sal plays and sings, I wonder what my mother is thinking.  I wonder if she is remembering hearing these songs before.  I wonder if she is thinking about my father.  I wonder if she is remembering any moments from the past.  Or is she just living in this moment, listening to the music, eating her cake, and checking to see if I am still with her?

I wish I could feel joy in this day.  I miss my father and my sister, who lost their lives to cancer.  I miss my youngest daughter in LA, and my granddaughters whom I see all too seldom.  And I miss my oldest daughter, who we just helped move to Arizona, a place she has dreamed of going back to ever since her college and graduate school days in Prescott.  It’s easy to understand why I miss them all, but I don’t know how I can miss my mother when I am sitting in the same room with her watching her laugh and eat cake and enjoy the music.

When DJ Sal packs up to leave, I cross the room to my mother.  She asks me if I am leaving and I say yes.  She tells me to drive carefully.  I reach down and kiss her gently on the top of her head, lingering just a little longer than usual as I feel the tears begin again.  Then I give her a little wave and walk out into the warmth of the late August day, a day that seems to know already about the days that will soon follow.

Quiet Desperation

“Most men live lives of quiet desperation and go to the grave with the song still in them.”  –Henry David Thoreau

     I was still young, maybe even still in high school, when I read the lines from Henry David Thoreau about living “lives of quiet desperation.”  I had no idea what those words really meant, or maybe I just never gave it much thought until a week ago.

      On Sunday, April 21, I went to visit my mother in the nursing home as usual when she suddenly began to have a seizure.  I was alone in the room with her.  I grabbed her with one hand and reached for the call bell with the other, also yelling out, “Help!  Seizure!”

     The nurses came running, the rapid response team was called, and I fled to the hallway.  This was her third seizure with no known cause and so far no treatment.  Since that moment, I have seen again and again in my head those terrifying moments when my mother began her seizure.

     An  hour later I sat at the foot of her bed watching her breathe.  That was the moment I felt a sense of quiet desperation.  The room was still, my mother not yet speaking or moving.  Her roommate, who had not been in the room at the time, wheeled herself into the room not knowing what had happened.   She had never seen my mother in bed during the day, never seen her with oxygen on her, and never seen such panic on my face.  I explained to her what had happened.  She sat quietly for a moment and asked what she should look for in case she had another seizure during the night.  I told her not to worry, the nurses would take care of it, and she should just take care of herself and try to sleep.  She replied, “But she’s my friend.”  The two of them, both with dementia and health issues, had become close friends in the past few months.  She was present in the room when my mother had her second seizure and had called for help then.  She stayed in the room for the next few hours as we sat there and watched my mother slowly return to normal.

     Fear has taken up permanent residence in my heart as my ninety-year-old mother deals with one health crisis after another.  She has had several TIAs and one major stroke, a minor heart attack, the lost function of one of her kidneys, four fractures in her back that occurred after her first seizure, uterine cancer treated with radiation, constant urinary tract infections, and sudden asthma attacks, probably due to the radiation, all within a year and a half.   Four hours after this seizure, she was back to normal, talking, moving, even laughing.

    Her resolve amazes me.  Last week a social worker intern came to her with a questionnaire about being in the nursing home.  She was honest about not liking it, especially not liking the food, but liking the staff and activities.  He asked her if she ever felt like she wanted to die.  She said, “Yes, sometimes I do.  But I try not to because I don’t want to leave my daughter.  I love her so.”

     Desperation isn’t always frantic action like we might suppose.  Sometimes it is quiet, not really peaceful or calm, but that blend of quiet and desperate all in one moment that Thoreau wrote about.  The path my mother is on is one I won’t be on with her at the end, but every day I get to spend with her may just be her final gift to me.

Where is the Easter Bunny this year?

easter-candy-bunny-peeps-thumb21209958

As a child I loved Easter.  What was there not to like? I got new clothes, a cute little hat, patent leather shoes and white socks with lace trim.  I also got an Easter basket filled with chocolate bunnies and jelly beans, paddle balls and jacks, jump ropes and balls.  We would go to church and my sister and I would have our picture taken in our fancy clothes.  Then we would go home, have a huge Easter dinner with extended family, change our clothes, eat candy and play outside.

I guess Easter hasn’t really changed much for children.  Parents enjoy giving to their children the same Easter traditions they had.  Grandparents might be invited to share in Easter egg hunts and Easter brunch if they could travel or did not live too far away.

Now this year I am trying to reconfigure Easter.  It falls on March 31, a day before my sister’s death eight years ago.  My youngest daughter and her family are vacationing in Hawaii.  When they lived on the East Coast, we would visit them for Easter, go to church, do an Easter egg hunt, and eat a scrumptious brunch at the country club.

For the past few years, we have spent Easter with my oldest daughter in New Jersey.  We went to a vineyard near Atlantic City and enjoyed an elaborate brunch.  We took my mother with us and she loved to go there.  Last Easter the day after the brunch, my mother had a stroke and fell, hitting her head on the closet door at my daughter’s apartment.  We spent the rest of the day at Urgent Care and the hospital emergency room.  She seemed to recover and return to her normal life.

In May after another stroke on Mother’s Day and a new diagnosis of cancer,  my mother was admitted to the hospital and then to a nursing home, suffering also from vascular dementia caused by the strokes.  This year she will have Easter dinner in the nursing home with the other residents without her family.

My oldest daughter will spend Easter alone in New Jersey.  Fears of furloughs and even the possibility of layoffs have changed the lives of many federal employees.  She doesn’t have time off to spare this year, and the five-hour drive up and back to our house is too much to do in just two days.  My husband and I will also be alone except for the few hours I will spend with my mother at the nursing home.

Holidays bring changes.  When I had family around me, holidays were special.  Now they seem to be just another day. While I was young and loving Easter, I am sure I was not aware that somewhere there were older people alone during holidays.  When I had children of my own, we were able to include our parents and grandparents in celebrations because we lived close by.  Now that I am a grandparent myself, I can sense how lonely old age can be.  I will at least talk to my daughter in New Jersey and visit my mother in the nursing home.  I feel lucky to still be able to do that.  I will miss the Easter bunny’s visit this year, but maybe I could still enjoy part of the day sitting in the silence of my living room surrounded by my yellow Peeps and wonderful memories of the way Easter used to be.