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.

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.

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.

Dementia: A Loss for Everyone

“Hold on to what you must do
even if it is a long way from here.
Hold on to life
even when it is easier letting go.
Hold on to my hand
even when I have gone away from you.”
—Native American Prayer

Dementia:  A Loss for Everyone

The mother I have known all my life is gone.  She hasn’t died yet physically, but she is so delusional and paranoid that she no longer wants me in her life.  I have tried to help her through her fears, but if I try to help her see that what she fears isn’t real or isn’t happening, she gets angry.  When I agree with her that things are terrible or tell her I will talk to someone about it, then I feed her delusions and keep them real for her.

Last week the doctor ordered an abdominal ultrasound.  I wasn’t told why at first, and then I was told it was to check the stent they had put in earlier in the summer.  The fact is she never had a stent put in because the doctor wasn’t able to do it.  Why didn’t her current doctor know that?  I still don’t have the results of that test after I have placed numerous calls to her doctors to ask them to call me.  The morning after the test she told me she saw a man in the room where she had the test.  He was in the wall and then she saw him in the mirror, the same man who had come into her room at night several times.  Then she thought during the test they had put the man inside her.  She was worried that since he wouldn’t be able to eat in there, he would die and then so would she.

This week she has claimed that her roommate (the second one she has had because she accused her former roommate of trying to kill her) is trying to scare her by making noises at night and screaming.  Of course, none of this has happened.  But I have not found a way to reassure her that she is safe.  The aides have told her they will sit outside her room at night and protect her.  However, they apparently can’t protect her from her roommate.

A few days ago she told me she thought the aides had given her some drug to try to kill her.  She woke up at 4:30 a.m. (changed it to 12:30 and then to 3:30, with no idea what time it was) and didn’t know where she was.  She said she was fully dressed but in bed, so she got up, saw her nightgown on the bed, and changed into it (an activity she can’t do by herself and any movement out of the bed would have caused alarms to go off).  She then said she took something out of her mouth and held it in her hand, but she didn’t know what happened to it.  How am I supposed to react to such delusions?

I tried to console her this morning when she finally called me.  Instead, she told me she never wants to see me again.  She will find someone else to help her, she said, and hung up.  I was going to visit her today after staying away for a few days because of a cold, but I will not be seeing her again for awhile.

I know her dementia is advancing and a recurrent UTI is affecting her thinking.  Still, I have been through this with her at least three other times and I am tired.  A year ago she was still the mother I knew.  Now I don’t know who she is.  I feel helpless and discouraged.  I know other women my age must be dealing with similar situations with aging parents diagnosed with Alzheimer’s or dementia.  I wonder about my own future, especially at those times when I can’t remember someone’s name or what I needed at the supermarket or why I went into another room.

My mother has had several minor heart attacks and several small strokes.  None of those killed her.  Instead, she is trying to cope with increasing paranoia and delusions because of advancing vascular dementia.  She has no one to help her through it and it will eventually result in death.  I love her with all my heart.  That will never change.

“Daddy, I want to go home.”

One of the most emotional images I have seen recently on the news coverage of the hurricane came from a father who had lost his home.  The reporter was interviewing him about the loss when the father said that his daughter kept saying to him over and over, “Daddy, I want to go home.  I just want to go home.”  His eyes filled with tears as he told the reporter that his daughter was only six and had no way of understanding what had happened.

I thought about my granddaughters.  One had just turned seven and the other one is three.  Wednesday they were out trick-or-treating in California and life was normal for them.  But suppose, I thought, they had lost everything in an earthquake or other natural disaster.  How can small children handle such catastrophes?  As adults, we don’t have good answers for them.

Last night as I snuggled under the covers watching the latest hurricane news coverage, I felt guilty.  Of course, we have had to endure power outages before, sometimes more than a week.  Once after an ice storm we left home with our pets and stayed in a motel for several days.  Still I have never gone without food or water.  I have sat in the dark and the cold, but I had my house and my possessions.  I have never had to go through a dumpster to find food.  I feel totally helpless, especially when I think about the children.

Giving money doesn’t seem to be enough.  I want to drive down to the Jersey shore where my oldest daughter is and help.  She lives just outside of Atlantic City and while her condo was not flooded or damaged and her power has been restored, she is surrounded by loss everywhere.  I want to be with her.  I want to bring toys to the children, water and food to the adults, as I am sure we all do.

Many events in my life recently have caused a major writer’s block for me.  Not even a block really, just a tiredness, a deep depression, a disinterest in struggling to find words to express my emotions.  The images of the hurricane won’t bring to me a poem.  Words that often come to me in the middle of the night or in the early hours of morning fail me now as I am mesmerized by the television coverage of the tragic circumstances of so many Americans.  The ordinary events of my life seem wrong.  The warmth of my home and the food and water available to me seem wrong.  I long to hug my grandchildren as I pray they will never have to face such hardships as that little six-year-old child who just wants to go home.

October Afternoon

October Afternoon

October afternoon with the sun’s rays
strong upon a cluster of brilliantly luminescent red-gold trees,
light seeming to glow from within each leaf,
it’s peak time in upstate New York.

One tree stands far apart from the others,
stripped of all its beauty with the exception of one branch,
even more striking in its aloneness, its disparity and exclusion
from the surrounding autumnal displays of glory.

Losing does not indicate weakness here but pride.
“One does not give up until it’s time,” it seems to say.
Surviving recent strong winds and heavy rain,
this one branch hangs on for one more day
until one leaf after another will drop,
leaving behind a strong trunk and roots that will herald new life come spring.

Whispering in the wind, it softly states,
“Beauty is not in what was lost but in what remains.”

My Dog Has Dementia!

photo: Muu-karhu

My Dog Has Dementia!

Yesterday while visiting my mother in the nursing home, I asked my husband to take our fourteen-year-old Australian Shepherd to the vet because of a number of problems.  I was alarmed in the morning when I noticed his nose was bleeding, so I was afraid he had a terrible disease and we would lose him.  He was not eating and was pacing and panting in the evening.  He was struggling with stairs and stumbling over tree roots on his walks.  Something was definitely wrong!

The diagnosis was a surprise!  First, the nose bleed was apparently due to my cat’s obnoxious behavior toward him, often jumping on him, wrapping her paws around his back legs and riding along, and hunkering down on the stairs as he approached them to jump out in glee.  The vet saw a scratch on his nose, so that was an easy diagnosis, although trouble looms ahead for the cat.

However, she attributed many of his behavioral changes to his age.  His restlessness, panting, and lack of interest in food she attributed to dementia.  Yikes!  My mother and my dog with dementia!  Can I be far behind?

I’ve been coping with my mother’s advancing dementia for months, although I suspect she has had it for longer than that.  She is easily confused, delusional, and suffers from paranoia and speech and memory difficulties.  Her care in the nursing home is sometimes marginal, requiring my constant attention and intervention.  I’m wondering how my dog’s needs will change in the future.

One good thing is he lives with me so I don’t have to drive to visit him.  He is extremely dependent on me, like my mother.  While she calls me up to ten times a day, he just stays by my side all the time.  He follows me from room to room, lying down next to me.  I am now limiting my trips upstairs because I know he will follow me regardless of how difficult it is for him.  I try to give him more attention.  Our morning routine consists of dragging myself out of bed and getting down on the floor next to him for some cuddle time.  I rub his belly and tell him what a special dog he is.  I tell him how much I love him.  I hug him and rest my head on his and wish him health even though I know his time with me is now limited.

The same is true of my mother.  When I visit her, I make sure she has what she needs.  My presence at the nursing home each day sends the staff fleeing to try to avoid my daily requests for her care.  I sit with her and talk.  I show her the latest photos of her great-granddaughters, the three-year-old in her new ballet tutu ready for her first lesson, the photos of the seven-year-old with twelve friends at her sleep-under birthday party over the weekend. (A sleep-under party is apparently like a sleep-over party with sleeping bags, a movie, and popcorn, but the kids go home instead of spending the night.)  When I leave my mother, I reach down and kiss her on the forehead.  I touch her arm and tell her I will see her soon.  I know her time with me is also limited.  She has been a part of my life for sixty-seven years.  How will I go on without her?  I am still grieving over the loss of my sister.  These impending losses weigh me down.  I am walking through deep mud, struggling to lift up each foot as I maneuver myself through each day.

My dog has been with me for fourteen years, a constant companion.  When I got him as a puppy, he was not the one I initially chose.  I wanted a female puppy.  The breeder had all the puppies in her barn, but when she went to get the female, she accidentally stepped on the paws of one of the puppies.   He whimpered and retreated to the corner.  She said he would never make a good herding dog because he was too timid.  I watched him cower in the corner looking at me with huge sad eyes. The breeder gave me a discount.  I didn’t need it.  I took him home.  He may not have made a good herding dog for the sheep, but he’s pretty good at herding my husband and me around the house.  When he’s ready for bed, he sits in front of me and stares until I get up and move upstairs.  Sometimes he even plays with my old slippers like he used to do as a puppy.  I love him with all my heart.

Saturday night my mother called me at 9:00 p.m. crying.  She didn’t know where she was.  She thought she had been moved to a strange house.  The room was dark.  She was alone and afraid.  In reality, one of the patients was wandering, so they closed off the doors to the rooms so he wouldn’t enter them.  That threw her room into darkness.  My mother thought her roommate had been taken away even though she was actually asleep in her bed on the other side of the room.  I told her I would take care of it and everything would be fine.  I called the nurse to go in and reassure her and turn on a light.  She calmed down.

I wonder if my dog will feel afraid and lost.  I wonder if he will wake up some day and not know where he is.  He won’t be able to tell me what he fears.  I will hold him and kiss him on the head and tell him everything will be okay.  Sometimes a little lie is a necessity.