The Seventh Wave

When I was a young girl I remember hearing that every seventh wave at the beach was the biggest one.  For surfers this was great news as they sat and waited to ride the 'big one' in.  Later I learned that it was a myth; still, I couldn't help but count the waves every time I visited the ocean.

I haven't thought of this in many years until now as I research the seven stages of Alzheimer's Disease.  I was reviewing my mother's progression through each phase almost clinically checking off the myriad symptoms, the behaviors that manifest themselves with each phase.  I had been braced for the seventh and worst stage -- the biggest wave.  I knew it was coming, I had warnings.  Just like the girl standing on the shore watching the biggest swell form far out in the deep water then build momentum and size as it approached.  On days when the swells were especially big I would run backwards as the wave approached knowing that it might break closer to the water's edge and catch me in the tumultuous contact with the shoreline.  Too often I had been upended by a large wave that threw me down and tossed me about like an abandoned seashell.  So it was when my mother's illness reached that seventh and final stage, the biggest and worst, most destructive wave (metaphorically speaking.) 

The smaller waves hit the shore in a steady progression.  I watched and waited through the agonizing years of confusions, memory loss, physical changes and finally, finally this moment. There it was, the seventh wave building in the distance.  I braced myself.  I was ready.  It built slowly causing anguish as I watched helplessly.  No.  I couldn't hold back the illness any more than I could turn back the tide.  The wave would roll in looming larger and larger before crashing down on me.  It arched itself menacingly.  I felt the foam and spray of the warning  that it was about to pound into the sand.  My mother had been showing increasing signs of anger, inability to communicate, lack of understanding of simple words spoken to her. Now here it was spewing the foam and fury, showing the power of nature, reminding me that just like the ocean, Alzheimer's rolled in with impending force.  The seventh wave was a tidal wave.  It was destructive, horrific, and totally dreaded.  There was no life preserver to throw.  There was no way to avoid it.  

My mother sat at the edge of her bed.  She was angry.  I didn't know why.  It was bedtime and instead of putting her nightgown on she threw it in the trash can.  My husband, Skip was helping with her shoes and socks.  He retrieved the gown from the trash and told her to get undressed.  Then he left the room allowing her privacy.  I remained to help her remove her clothes.  She sat on the bed glowering.  

"What's wrong?" I asked with concern.  She didn't answer immediately.  She couldn't find the words.  She gestured helplessly, waving her arms about in frustration.  I asked again.

"I don't like it!"  She shook her head.  She looked towards the door.  "He shouldn't...I don't like the way he spoke to me."

"What?  Why?  He just told you to take your clothes off so you could go to bed."

"I don't have to, and I don't want to," she proclaimed with the petulance of a small rebellious child.

"Why are you so angry?"  It was a stupid question.  I knew better than to ask.  That afternoon I had asked her several questions, each one eliciting the same response, 'I don't know.'   Why did I think that this time it would be different?   

My mother surprised me.  She provided an answer, an insight:

"It's not nice...the way he spoke!"  

 I became defensive.  I wanted to engage in an argument to defend my husband who out of the goodness of his heart jumped in to help me -- to help Mom.  How could this selfless act be misinterpreted?  Instead, I turned away and called to Skip to come back into the room.  I explained how Mom was feeling and reminded him that his abrupt demeanor had been insulting.  Skip immediately apologized and hugged her telling her that he didn't mean anything by it.  Mom smiled and her expression softened.  It wasn't his apology that made the difference; it was the physical contact.  A hug calmed her.  I thought about the importance of this since verbal communication was so difficult.  Words were confusing and misunderstood, but a loving gesture was always appreciated even among those with the most remedial cognition.  (Often I find myself behaving as a custodian rather than a loving daughter.  Instead of a hug I  execute my duties with clinical efficiency forgetting that my mother responds to the gentle touch, the reassuring gesture more than the words.  It is easy to forget, especially when my mother is combative, stubborn or irritable.) I softened and gently chided myself for succumbing to my own reactions.  I knew that as much as I fought it, my mother had entered the final stages of Alzheimer's and I would be dealing with all of its ugliness, all of the anger, the frustration, the fear and the emotional upheaval that it caused both for the patient and for the caregiver.  

Yes, I  am now observing the seventh wave, and rather than stepping back higher up the sand, I wade into the water.  I hold my breath and dive into the crest praying that I will survive while knowing that the wave itself will soon be nonexistent as it spends itself on the beach before withdrawing.

Hallucinations

I have witnessed my mother's hallucinations over a period of time but they are increasing to the point of being alarming, sad, disconcerting and yet, absolutely hilarious.  Last night at around 1 AM she shouted out several "Hellos".  I ran into her room to see what was going on.  Evidently she was hosting a party in her room but when I walked in she wasn't clear who was in attendance.  A few days ago she began talking to someone who supposedly gave her something to taste.  She was chewing on the imaginary tidbit saying, "Mmm.  It's so sweet!"  Today she walked into the kitchen and began talking to someone who wasn't there but refused to tell me who it was.  (Does she have a secret pal?)

This evening, Mom walked to the back door, opened it and shouted out to the empty screened porch.  "There's a light on in the kitchen and no one is in there.  Someone should turn it off."  Then she stood at the door for a moment and repeated her message.  At this point I decided to ask her who she was talking to.
"Those people out there," she replied.
"What people?" I asked.
"Them," she told me pointing at an empty porch.  "That whole gang out there."
"Okay," I said.  "So you see a whole gang of people?"
"Yes, she insisted.
Now, to be clear, I lecture others about how we shouldn't correct those with dementia.  We should enter their world instead of trying to pull them into our world. Normally I do that too.  It is crazy and totally counter-intuitive for me.  My responsible and logical self wants to point out the errors in my mother's thinking and perception but  I overcome my strong desire to be the one in control and play along...usually.  Today, was not that day.  It was the end of the day.  I had spent the entire day dealing with stressful things.  My brother was in the hospital; a brother who also has Alzheimer's and who is living out of state without a family member to help with medical decisions.  I was also dealing with a few caregiver issues that arose from a couple of the caregiver support groups. I was trying to help or find help.  In addition, my Mother-in-law on the other side of the country was injured and in acute pain. Both my husband and I were in contact with his sister, his mother and trying to assist long distance.  I will avoid listing all of the other things that were of concern other than the approaching hurricane that was threatening our area and for which we were preparing just in case it changed course and blew this way.

So, to get back to Mom's hallucination; well, I guess I was not feeling mentally equipped to handle it as well as I should have.  Instead of telling her to invite everyone inside I asked her what the people to whom she spoke looked like.  She peered intently.  Then, shaking her head she replied that she couldn't describe them.  "There are too many people out there.  They just look like a group of people."
"Yes, but can you describe them?  Are they men? Are they women?  What color is their hair?"
"Oh, you know," she answered.  "I can't tell you everything."
"Well show me one person," I insisted.
She walked out and pointed to an empty chair.  "There," she told me.  "Right there.  See?  That woman right there."
"What color is that woman's hair?"
"Green."
I looked at the empty green chair.  "Touch her," I commanded. Mom obediently touched the chair.  "So are you touching a person?" I continued.
"Yes.  Of course I am."
"Grab her hand and hold it."
"I can't," she replied.  "She just got up."
Still I couldn't let it go.  "Show me someone else," I pushed on.
"There," she pointed.  "That man over there."
I shook my head and said, "Okay.  Well let's go inside now."  I resigned myself to the fact that Mom was not going to admit that there was no one there.   

It had been that kind of day.  Mom had begun the day angry because she was sitting and waiting for someone to come get her and without calling out to us, I simply went up to help her at the usual waking time.  I found her standing in the middle of her room, naked and trying to wrap herself in a blanket.  She was tripping over it and had it stuck under the wheels of her walker.  I asked her what she was doing and why she had taken her nightgown off.  She replied that she wanted to put her clothes on but someone had to help her and she was waiting for them to come.  I reminded her that I was that 'someone.' Getting her dressed was an ordeal because she couldn't perform even the most simple tasks and I had to assist with every single thing.  (It was a new low.)

All day long, Mom walked around and around aimlessly.  When I tried engaging her in conversation her aphasia wouldn't allow for discernible conversation or answers. But this...this massive hallucination was more than I could bare.  I felt myself shaking inside.  My stomach was knotted. I tried to calm myself, to count to ten, to do some deep breathing but Mom was pacing again and finally I asked her what she was doing.  She couldn't answer.  When she sat down in the place that I usually sit, I asked her why she was sitting there and she gave a muddled response that was unintelligible.  She glared at me when I tried to provide some assistance.  Something was bothering her but she couldn't express herself.  There were two more incidents that required answers she couldn't provide.  Once more she was on the move and I asked where she was going.  She grew angry and petulant.
"I'm going to bed!" she scowled angrily.
"You can't.  It's not time."
"Well I want to," she yelled at me.  (I had pushed her over the edge.)
"Why?"
"Because I am tired of you asking me questions!"  (Hmmm...even though she had dementia and aphasia she managed to express how angry she was.  Yup!  I got the message loud and clear.)
Now it was my turn.  I'm not proud of these moments, but I lost my temper.  I told her, "Okay, go to bed...because I don't want to see your snarky expression anymore."  I stormed over to the door to open it to her room. I took her upstairs. I decided that I would get one more 'dig' in.  "Can I help you with your nightgown or is that a question you don't want to answer either?"  Suddenly I was the injured child.  My mother became the mature one. with a kind tone she replied, "I didn't mean that you couldn't ask me questions...I wasn't really mad at you. I'm just mad at the situation," she told me with a lucidity that I hadn't heard in over two years.  I was amazed.  It was like a slap in the face.  It calmed me right down and now I was apologizing to her.  I explained myself telling her that I loved her and as her daughter who cared for her I sometimes might push a little too hard.  I felt terrible.  Reminding myself that I shouldn't lose my temper, that I was dealing with someone who couldn't help herself, I had to allow for my mother's temper just as I might do with a small child who found that the only means of expressing frustration was through an emotional outburst.  I told Mom that it was okay for her to get angry once in a while.  "Neither of us is perfect," I reminded her with a smile and a wink.
Mom smiled back and nodded.  "I'm sorry," she told me with eyes filling with tears.  "Sometimes when when you ask me questions I get confused.  It's upsetting."
"I know," I told her consolingly.
My heart was full. I was so very sorry I had been angry.  How could I have lost my temper?  I berated myself.  My eyes also filled with tears as I gave her a hug.  "I love you Mom."  I turned and walked away before she could see me crying.  I stood at the door and shed my guilty tears but then slowly remembered my own words I had just spoken to her.  "Neither of us is perfect."  I could forgive myself for my lapse.  It was alright.  I walked back to her bed, straightened the covers and pulled the sheet up under her chin.  "Goodnight.  Sweet dreams," I told her softly.  She was already rolling over to fall asleep smiling sweetly.
"Thank you," she mumbled back in a sleepy voice.
I turned off the light and walked away grateful that the day ended on a good note.  There was no real resolution. However, there was solace in knowing that beneath the high emotion there was still a profound love.  The love that we shared was sometimes battered, sometimes abused, and even sometimes ignored, but still there, still in tact.

It is a strong reminder that the memories might be gone, the mind might be failing, but as long as there is a breath to breathe my mother will always know deep down inside that she is loved.  Love speaks to the part of her protected by some unseen force.  Her being...her soul will always be the part of her that time and the ravages of Alzheimer's will never touch.  That is what I speak to...it's what I will fiercely protect, treasure, and address when my words have lost all meaning, when her awareness is gone, and when her thoughts have dried up.  When her own words fail and the smile fades, she will still know I love her.