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.

Deficient Health Care for the Elderly

On Sunday I left the nursing home with a feeling of optimism.  My mother was happy, talkative, and involved with activities there.  Her dementia was being controlled with Aricept and her delusions were under control with Seroquel, two drugs I fought off initially, but my mother’s increasing agitation, delusions, and aggressive tendencies gave me no choice.  I was glad I made the choice to have her put on these drugs.

Monday morning I got a call at 5:30 a.m. from the nurse at the nursing home.  My mother had a seizure and was being taken to the emergency department.  I made an immediate, panicky trip to the ER.  I got very little information from the emergency room doctor or the nursing home originally.  The doctor suggested her increasing back pain that was causing  her to scream and cry in the ER may have been due to the seizure, perhaps being put onto the floor or perhaps the aide had let her slip or fall in the process!  I went to the nursing home for more details.  I didn’t get much, but I was told she did not fall.  Her pain was so excruciating she was given morphine and later Percocet.  I wondered why the morphine didn’t kick in right away, so when I asked if she could be given more, the nurse discovered that actually she had never received the first dose!  The entire emergency room visit was a catastrophe.  No one knew for sure what had happened to her or why she had more back pain, except the x-rays showed two compression fractures most likely from her two previous falls although it could also have been a result of her treatment for uterine cancer.  I was never told about the compression fractures by the nursing home.  In fact, one of the nurses told me she was faking the pain to get my sympathy and actually told her to stop doing that.  Her pain was not adequately treated at the nursing home because they didn’t really believe she was in pain.   Because she may have had a cardiac event that precipitated the seizure, she was admitted to the hospital for observation.  She was put into a room with an elderly woman who had just had an operation for a broken hip.  The woman talked constantly, mostly gibberish punctuated with yells and screams, which upset my mother.  She became confused and disoriented, thinking the woman was her roommate at the nursing home and they were doing something to hurt her.  I stayed with her all day but the confusion increased.  The pain was excruciating.  She could not move in the bed without pain and more pain medication was given.  She did not eat or talk much.  I stayed until 5:30 when they brought her a dinner she did not touch.  The physician on the cardiac unit (a doctor I was all-too-familiar with from previous hospitalizations) indicated to me that because of my mother’s age, there was really nothing to be done.  He stated she was at the end stage of her life and he did not believe in helping her live longer.  He had stated the same thing previously right after after her diagnosis of uterine cancer, telling me to just let it go, that no treatment was available for her.  That turned out not to be true, she was treated with radiation, and even though her oncologist told me in August that she had at the most three months to live, she has outsmarted them all.  This, however, seemed to be a definite decline toward the end.

I got a call early the following morning.  My mother was screaming in anger that they were all lying to her.  She told me they said I was dead and then she thought I was the person in the next bed they were hurting, and it was hard to convince her that I was alive since I was speaking to her on the phone.  I told her I would come up.  A short time after that I got another call pleading with me to come up as soon as possible.  She was out of control.   An aide was sitting by her side when I got there assuring her she was not lying to her and I would be there shortly.  There was no calming her down, so it was decided that her strange surroundings were upsetting her and arrangements were made to return her to the nursing home.  She was given lunch but she didn’t eat it, and even though I was told she was dehydrated when she came into the emergency room, no IVs or liquids were given to her.

By 2:00 she was back in her room at the nursing home and seemed fine when I left.  A few hours later I got a call from the nurse telling me she had fallen again.  (She had two falls in two days a few weeks prior which apparently caused the fractures).  She was upset with her roommate for leaving the room without her.  She was sitting in her chair and suddenly decided to go after her and she fell.  Back to the emergency room for more tests and x-rays.  The only funny part was that what I assumed was dried blood all over her and the bed was actually chocolate.  She had apparently fallen on top of a chocolate donut.

After four hours in the ER, tests showed no major problems except a urinary tract infection which would explain the sudden change in her behavior, but the doctor decided not to treat it since she had similar problems before!  Again I felt that she was being treated as if her life did not matter because of her age.  I knew the nursing home doctor would order treatment, so finally at 8:30 p.m. she was returned to her room.  She had not eaten all day or had any liquids.

This morning when I called her, she did not know where she was.  She said she was all alone there, although she was not, and there was no convincing her otherwise.  Her anger at me and irrational thoughts are hard to deal with.  She is no longer the mother I once knew.  The mother I shopped with and talked with several times a day and went out to lunch with and shared my days with is gone.

I know that my generation will be filling nursing homes and dementia unit facilities in the decades to come.  I may soon find myself in the same condition as my mother.  It frightens me.

Ladybugs and Wheelchairs

“Perhaps everything terrible is in its deepest being something helpless that wants help from us.”—Rainer Maria Rilke

Writing has always been a challenge for me to do daily.  Since my mother’s illness and hospitalization, writing has had to take a place even lower on my daily to-do list.  The thought of losing my mother has frozen my creativity and saddened me beyond my usual depression.  It’s not that moments of inspiration haven’t occurred.  It’s just that they haven’t seemed to be able to rise above my daily commitments.

Last week I sat outside the nursing home with my mother in her wheelchair.  We talked about the beauty of the surrounding gardens, some news items, and her complaints about the nursing home.  She repeatedly stated her longing to go home and showed her confusion about why she can’t do it.  Then a period of silence set in, all conversation ended momentarily.

I began to watch a ladybug crawling on the metal table in front of us.  She went first in one direction toward the edge of the table, and then she turned around to make her way to another edge.  She wasn’t frantic in her efforts, just methodical.  I reached for a small leaf resting on the table, gently slid it under her body, and lowered her to the grass.  It just seemed to me that she would be happier in the grass.  She may have been able to do that herself (or as my husband later pointed out to me, ladybugs do fly, a comment that destroyed my satisfaction in helping her), but still I felt better after she was on the ground.

I continued to watch her for a while longer.  She climbed up on a blade of grass, her weight causing it to arc over, and then when she reached the tip of the blade, she moved to the tip of another blade, swinging a little on it, and continuing along the grassy area.  I’d like to think I did a good thing, moving her to a better place.  I’ll never really know if she was unhappy on the metal table.  But it didn’t seem like a natural habitat for her, unlike the grass.

I feel the same way about the tiny half-room my mother occupies on the second floor of the nursing home.  Sitting in a wheelchair is not natural for her.  Being unable to stand up without an alarm going off is not normal for her.  She went into the hospital a strong walker, using a walker only for security.  She uses her strong legs at times to move down the hall in her wheelchair, at least during those times when she realizes she can.  Other times she is confused and believes she is not allowed to move, unable to distinguish between moving her wheelchair along and standing up to walk, something not allowed there.  She feels imprisoned, held down by rules of safety but not really living her life the way she could.  I struggle with guilt, wanting to take her home to her apartment but aware that her confusion could lead her to do something unsafe.  She could fall and break a hip, or turn on the stove or burn something in the microwave.  Round-the-clock care is out of the question.  At $24 an hour, she would be totally broke in a few months, all her savings gone, and forced to apply for Medicaid and enter a nursing home, perhaps one even worse than where she is now.

I guess if there is such a thing as reincarnation, I would not mind becoming a ladybug.  If I wanted to, I could fly away.  If I walked along a metal table looking for a way down, perhaps someone would come along and assist me to the ground where I could swing on blades of cool grass and move along on my own, independent and strong.