Goodnight, Mom

I am awake.  I can't go back to sleep even though it is stll early morning.  All I can think about is what I have done.  I don't feel guilty about it but I feel sad and sorry.

Yesterday we received a call that a room was ready for my mother in a skilled nursing home.  We had planned on moving her later but the room was available a day early.  I wasn't ready yet but Mom was more lucid and able to move around, so we decided that there was no time like the present. Skip and I had agreed a month ago that it was best for Mom and for us.  Mom needed a place where there were no dangers.  Our home was an accident waiting to happen.  There were steps, stairs, and wires.  There were obstacles and distractions.  Mom was prone to fits of intense anger.  She was fearful  of moving, of standing up., of lying down.  She reacted in violent outbursts.  She would scream, punch and throw her body backwards, mindless of how she could cause herself (or others) harm.  The sedating drugs we sprinkled on her food helped a little but we worried that she would drop the food on the floor (which she often did) and our dog, Kira might eat the food and ingest the drugs.  I worried, I stressed, I watched.  When I left the room, I hurried back.  When I couldn't be with her, Skip had to stop what he was doing to watch, to assist, to do all of things I never, ever, EVER wanted him to do. We couldn't do any more than we had already done but when the decision was made, I questioned it.  I worried and cried.  Finally, resigned to the inevitable, I packed up a few things and loaded Mom into the car.  Mom didn't want to go.  We told her we were taking a drive but somehow she knew.

"No.  I don't want to go. Please," she begged as she turned away from the door.

All these months of mindless existence evaporated as she understood what was happening.  She turned to me with a panicked look in her eyes, "Let me...I wanna...please."  She couldn't put the words together, but I knew what she wanted to do.  She wanted to sit in her chair.  She wanted to close her eyes and nap quietly.  She wanted to be lifted gently when it was time to move to the kitchen for her dinner.  She wanted to hear the familiar words and sounds  that she only partially understood, 'It's time for dinner. It's time for bed. It's time to change your clothes.'

I couldn't look into her eyes. I knew I that my resolve would evaporate. "Maybe we should wait until tomorrow," I told Skip.

"No.  We need to do this now." My loving husband, my rock, my anchor reminded me of all of the reasons we had to follow through with the plan.  Four years of dedicated caregiving, four years of staying home...putting Mom first, deferring our own needs: trips, parties, nights out, social engagements,work, personal care, and unnecessary expenditures--we needed our lives back.  There was nothing more we could do for Mom.

We drove down our driveway and I knew that Mom would never again sit in our kitchen. She would never walk through the door or drive down this driveway again. I glanced back at Mom sitting silently in the back seat.  She looked small and vulnerable.  She was our almost 100 year-old child, our ancient baby. I smiled at her trying to mask my feelings.  Tears welled up in my eyes and I turned my head to focus on the road. The rain had stopped and the sun emerged from the clouds.  The Carolina sky sparkled its perfect blue in the large puddles that collected along the roads.

"What a pretty day!" I remarked, hoping that Mom would notice.  She remained silent and unseeing. I wondered, "What is she thinking right now?"  We drove out of the neighborhood thinking our own thoughts.  The car was heavy with silence, with sadness. Then, from the back seat a small voice spoke with a clarity we hadn't heard in many, many months.
"Where are we going?"

I wasn't prepared for this.  I searched for the words.  Then, I replied, "We're going somewhere you've been before." It was true.  She had been to the nursing home when she needed rehab after falling and breaking her clavicle.  Then I added, "You're going to see the nurses and doctors." I don't know if she heard me.  I know that she wouldn't have understood even if she had heard me.  Her eyes were already glazing over.  She fidgeted and fiddled with her sweater and then sat back motionless.  I thought that she might be falling asleep but her eyes remained open and again I found myself wondering if she knew something, if she understood more than I thought she did. Had part of her brain awakened? Fresh tears fell from my eyes and I struggled to regain my composure--my unemotional self.

When we arrived at the nursing home I rushed out of the car leaving Skip to help Mom. I wanted to meet with the admissions people, sign the paperwork, to complete the process and leave.  I needed to hold it together just for this little amount of time--to get through without falling apart.  I remembered how I felt when we put our dog down and how I tried and failed to hide my sadness--how I rushed off to cry alone.  I felt the same now.  Granted, we were simply putting my mother in a safer environment, but the thought that she might not flourish in this environment, and the knowledge that she would die here made me want to grab her and hold her...to take her home again...to erase my resolve.  In an irrational moment I wanted to turn around and walk back out the door.  I glanced back at the car and then turned with all of the emotional strength I could find. I had to show my brave face, my resignation.

"Hello.  I'm Jessica Bryan.  I'm here with my mother, Pauline."

The paperwork was completed.  My painted smile quivered when the admissions clerk asked if my mother had a living will.  I wanted to cry out, "My mother is nearly 100 years-old with an incurable illness.  She's in last stages of Alzheimer's.  There is no reason to keep her alive.  There is no quality of life!" Instead I shrugged and said that she probably had one somewhere, but for now I would make the decisions as her daughter--her Power of Attorney. I would do the humane things, the things that would be sensible when the time came.

Skip joined me after having escorted Mom to her room and carrying in her few belongings that I had packed.  I reminded myself that I had forgotten her comb and instantly felt remorse.  (Okay, so this is how it was going to be.  I would spend my time feeling remorse over stupid things. I would beat myself up because her hair might be unkempt for 24 hours until I could get back there!)

We walked to the Alzheimer's wing after we thanked the nice lady for processing the paperwork, the nurses for taking Mom's medications, the orderly who showed us how to release the door lock that kept the patients inside--locked away behind the doors, away from families and normal life. I walked into her room, a clean room with sparkling floors.  She sat alone, tiny, and old--so old.  She looked up and tried to smile bravely but I could see the fear and confusion in her eyes. I told her we were leaving now but would be back soon. Skip took my hand as we walked down the long halls filled with residents lining the corridors, gazing without seeing, sitting without interacting, speaking without understanding. I lowered my eyes  and listened to the sound of our footsteps on the stark floors and echoing against the institutional walls, gulping air and trying not to cry until I got to the car.

Last night as I fell asleep I thought of Mom.  She was surrounded by people--lots and lots of people.  Yet, she was alone.  I sent a prayer that she would be okay, that she would know I was thinking of her and most of all, that I loved her. "Goodnight Mom," I told her, knowing that she would never again  hear me say that as I tucked her into her own bed in her own room.  "Goodnight Mom," I repeated,  knowing that I would see her in a few hours, that I would care for her needs in a limited way, that I would show her my love as well as I could, that I would say words that made me feel better but would have little effect on her.  I was sad--oh so sad.  I mourned for my mother who little by little had slipped away.  I was too preoccupied to mourn for her while I was tired and frustrated in my caregiving role.  I was busy.  I was tired.  But now, in the quiet of the night, I listened to hear the familiar sounds of her breathing over the monitor.  There was nothing but silence.  I told myself over and over that this was the best decision, the right decision.  Now I would have time to remember the mother I loved, the mother I cared for, the mother whom I would visit without feeling exhausted and frazzled by my caregiving duties, the mother I would hug and love even though she couldn't return the emotions.  One more time, with tears beginning anew, I breathed the words to her empty room, hoping that somehow, across the miles she would hear me.  "Goodnight, Mom."

Why I'm Not Laughing

A friend saw me today and inquired as to why she hadn't seen any funny blogs from me lately.  I grimaced as I told her that there was nothing funny to write about.  My friend's sympathy was immediate.   I hated the fact that what I said evoked a sympathetic response.  Yes, my mother is going downhill quickly, and, yes, it is incredibly difficult for both my husband Skip and for me to deal with the changes, the outrageous anger, the screaming and the dangers that accompany her manic episodes.  However, I am seeing the light at the end of the tunnel and humor will soon creep back into my life.  We have been told by everyone--all of the nurses, CNAs, hospice workers, and social workers that Mom should be in a skilled nursing facility.  She is a danger to herself and to us.  So I set aside any guilt that I might have had surrounding placing her in a nursing home and began calling to see who could take her. We found a home that was recommended by another friend and began the paperwork.  There were forms to fill out...lots of forms. Navigating my way through the process was, and still is, a learn-as-you-go feat.  The most difficult part is leaving messages for people and then waiting for them to call back (usually when I am in the shower, walking out the door, or on the road without ability to make notes.)

So, what I am saying is this; I have spent 20 years observing my mother's slow descent into oblivion.  It began a a few cognitive slips that caused me to raise my eyebrows.  Then there were some memory issues that crept into conversations and again, I took note.  After Dad died it was apparent that Mom had a brain dysfunction that prompted me to take her for tests and that was when she was officially diagnosed.  As time slipped away Mom grew more and more confused, forgetful, and childlike.  Four years ago, when we took her into our home to care for her because she was no longer capable of living independently, I began my journey as caregiver in earnest.  But it was not without humor and love.  Always, there has been laughter, playfulness, and joking that cheers us. Always...always...always.  Until now.  The past six months have been unbearably difficult--a nightmare from which we do not awaken.  I have described things in other blogs or at least alluded to incidents.  They are daily, even hourly now.  Hospice was called in because, well, she's dying. (We just don't know when.)  Hospice prescribed medication to control her unfounded anger, her hysteria.  We tried different pills, different amounts, different ways to administer medication to no avail.  She is drugged, she can't speak, she can't hear, she is fearful of everything, and now she is completely dependent on two strangers (us) whom she thinks are trying to kill her every time we gently assist her by touching her.  She sits in wet diapers not allowing us near her to change her.  She punches, kicks and slaps me when I try to help her into her nightgown.  She flails about when we are on the stairs and I fear that one or more of us might take a tumble.

This leads me to my original point.  There is light at the end of the tunnel because with as bad as things are, I cannot see any reason to continue to try to care for her at home any longer.  She had a good run but I know that if she were cognizant she would tell me to put her somewhere so she could spare us any more heartache.  Oh...but there IS heartache.  It is the knowledge that my mother's last years are providing an indelible memory of the hiddeous nature of Alzheimer's, of the images of a broken woman reduced to immodesty, all dignity removed by the situation of having her diapers changed, of being fed, of being bathed, dressed and toileted.

The thing is, before I celebrate my newfound freedom, I am already beginning to wonder how it will feel having our home back.  How will I adjust to my new role as non-caregiver?  I know that when she enters the nursing home she will never return to us.  Her last time at the kitchen counter, the last tissue I will remove from her breakfast dishes and throw in the trash, the last diaper I dispose of, the last time we change the sheets on her bed--it will all hit me and I know that for a while I will feel like something has been torn out of me.

I sit here evaluating.  Is it true that the stress and daily turmoil has become so much a part of me that I will miss it when it is gone?  I remind myself that just like any other form of grieving, I must take time to allow for the adjustment, the tears and the loss. I take a deep breath and go to bed wondering if tomorrow will be the day that all of the paperwork is ready, that Mom is admitted to her new
home--her last home before she is called to her eternal home.  I said my 'Good-byes' many years ago, but now, with this final decision I want to hold her for just one more minute, one more day because when she leaves us she takes a lifetime with her, a bond, a mother-daughter relationship, a presence.  I know that I will live the next few weeks on tenterhooks waiting for that phone call.  It will come sooner rather than later.  It will be from her nursing home, some kind soul will deliver the news and I will cry regardless of how I have prepared myself, how I have hated these past few months.  A loving child always cries.  We cry for our mothers who used to be, for the child within us, and for our own mortality.  So today, if you ask me why I am not laughing, you will know.