The Pain Has Begun

Ma and her baby
after our short walk
December 28, 2011

My visit with Mom yesterday was the best one I've had in over a week.  She was awake and sitting up straight in her chair when I had arrived.

"Hi Ma!"  I greeted her when I saw her.

"Come on!"  She said to me.  A phrase that usually means that she has to go to the toilet.

"Do you need the toilet?"  I asked.

"Come on!"  She repeated.

I shut off the chair alarm, detached the safety belt and helped her get up for a short walk to her toilet.

She wanted to walk.  We walked.

She got tired very fast, only able to walk about 100 ft before she started to lean on the rail that lines the walls of the halls.

"A little further Ma, you can do it."  I encouraged her.

We walked about 10 ft and she needed to sit.  She couldn't stand after a short rest; something she was able to do just under two weeks ago.

"Ma, do you have any pain?"  I asked her.

"Yes.  My back hurts."  She leaned forward to allow me to gently massage her sore lower back, something that I've done for her over the last 13 plus years that she's lived with me.

"Ah, that feels good."  Mom said as I began to give her a little Reiki with the massage.

"What about your belly, Ma?  Does your belly hurt?"  I asked as I gently began to rub her belly with Reiki hands fully charged with soothing energy.

"Oooo.  Yes, my belly hurts."  Mom offered, as she sat back in the chair and allowed me to provide her a little comfort with Reiki.

Mom was not able to walk again yesterday, she told me that she was too tired.  One of the CNA's ran to get Mom's chair that we had left behind in the dinning room.

Lunch was served.  Mom was asleep.  I couldn't rouse her to let her know I was leaving.  I took a picture and left.

Before leaving I spoke with the hospice nurse.  I told her about my mom's pain. I agreed to have her order a small dose of morphine to help ease mom's pain on an as needed basis.  So far, mom hasn't needed any pain medication; I want the home to be prepared with all approvals.  The pain has begun.

The Waiting Is The Hardest Part

Shopping with Ma at Whole Foods
October 28, 2011

Walking is more difficult; mom's weak.  The battle with chronic urinary tract infections appears to be winning the war on my mom's life.  After the last round of antibiotics ended on Monday, Mom didn't bounce back as she has in the past.

Mom's got kidney disease, she's had it for years because she didn't manage her blood sugar and blood pressure.  I know I'm not a doctor, but I think Mom's kidneys are beginning to fail.  I checked the symptoms of Renal Failure ; Mom's got several symptoms.  Will she fall into a coma like my friend Aggie who died of kidney failure?

I like to believe that I'm ready for Mom to die, but am I?  It's inevitable, mom will die... I have to be ready!

Seeing her leaning to the right, hanging over the side of her chair, fixated on hallucinations she sees on the floor, not able to communicate; her end appears to be closer than ever.

Mom's latest decline, happened in a blink of an eye.  Like a shot, similar to when Lewy first arrived into our lives nearly four years ago, mom's condition has changed dramatically.

Two weeks ago, she was walking, talking, laughing and enjoying her babies.  Truly precious moments that warmed my heart.

We made the best of the life we had to live with Lewy,what other option did we have?  The struggles and challenges were numerous, but the laughter and joy we were able to create, helped get us through the tough days.

The waiting is the hardest part of this journey with my mom and Lewy.  Waiting for the end and watching, I find myself praying for a peaceful end for Mom.

The Last Christmas?

Mom and one of her babies
December 2011

No one ever really knows when we will see the people we love for the last time.   Death is part of life; like Ben Franklin wrote hundreds of years ago, the only certainty in life is death and taxes.

It's Christmas 2011.  Mom is still alive.  She believes that she has a baby named Joseph.  She is lost in a life that only exists in her mind.  The key to keeping her calm is often hidden, which is part of the challenge of caring for her.

"Hurry!  He needs food."  Mom was frantic as she spoke into the phone last night.

"Look.  I got to go."  She continued.

"Where are you going?  Can I help?"  I replied, hoping to understand what she was trying to express in fragmented phrases.

"Where's the key?!"  Verbalizing a thought that made total sense to her.

"I have it."  I answered.

"Don't you understand?!"  Mom spoke through clenched teeth with a stern tone.  A tone I remembered well; I was not a model child.

"How should I proceed?  I need your help to understand."  Calmly I asked for her opinion, a technique I use to figure out what is bothering her in order to redirect her attention to something more pleasant.

Our conversation ended as quickly as it began.  Mom lost interest and rushed off to chase her hallucinations.

Today is Christmas; is it the last Christmas?

And The Baby's Name Is....

Ma with her babies and Basil from Activities
December 2011

"Where's the baby?"  My mom asked frantically.

"Oh, don't worry, Marte is babysitting."  I reply in an attempt to put her worry at ease.

"That's right."  Mom answers, allowing me to help her use the toilet.  Redirecting only works once mom's question has been answered satisfactorily.

"I can't wait to go out and buy him some new cloths and things."  Mom said to me yesterday as she cuddled her sweet little baby doll.  A doll I bought because it resembled my nephew's face when he was an infant.

"He's such a good baby."  I commented.

"Yes, he is!"  Mom answers back, laughing as she gently stroked her babies cute little face.

"Sometimes he cries, but not for very long."  Mom said in a matter of fact tone.  When other residents cry out, mom thinks it's her baby; she cuddles him to settle his tears.

It's beautiful seeing mom with her baby.  She named him Joseph.

Passion Never Dies

Ma and her adopted babies
December 2011

"Oh, how did this happen?!"  My mom exclaimed to me today when I gave her another baby to look after.

"Really Ma?  You have to ask?"  I replied in shock.

Laughing, she covered her face and said, "Oh!  That's right."  My mom laughed and laughed.

"Isn't she cute?  Look at her eyes."  My mom continued as she gently brushed her babies face.

Another resident yelped.

Mom, laughed again, believing that she had heard her baby had spoken to her.

"Did you hear that?" Mom laughed as she cuddled her baby.

"What's the babies name?"  I asked.

Mom stammered and stuttered, trying to say the babies name.  "I can't say it."  She tried again, literally trying to spit out the new babies name.

"I adopted these two. I love babies."  My mom said to me in a matter of fact way as she held her two babies.

"This one is a day and a half."  My mom told Basil, the young man who does activities for the folks.  She continued on to say,   "Tomorrow, I am getting another one."

Mom, she loves her babies; passion never dies.

She Was My Doll

Mom's reverting backward in time; gone are her care giving days to all her children and grandchildren.  No longer can we call Ma and tell her our good news or bad news.  She can't fix our problems anymore.  She can't really express her love for us in words.  To me, this is the part of her illness that hurts the most; seeing her body but her mind is no where near what it once had been.

I miss my Ma even though I see her every other day.

Yesterday I visited and mom filled my heart with joy.  Who the hell would have thought that Ma could bring me peace when she can't communicate very well?

"Oh...  You are so cute!"  My mom held up her baby Susie and gushed.  She hugged Susie the doll, put her forehead to the dolls forehead and fussed like a young mom.  Smiles and baby talk; real beauty.

It was so darn special to witness when I walked through the door and saw my mom loving her baby.  Was she reliving her time as a mom?  Is this how she was with all of her children and grandchildren?

Returning from acupuncture yesterday, mom and I were standing in the elevator, waiting for it to ascend to her locked ward.  Mom, stepped toward me, nestled her head into my chest while she put her arms around me, a real hug, the type of hugs she gave me before she got sick.

"Oh, my little Mommy, I love you."  I said to her like I always did; returning the hug.

My heart was full at that moment, her warm embrace washed away all the pain that I have held from losing my mom to Lewy Bodies Dementia.  For a split second, mom was back, she hugged me;  once again, I was mom's daughter.

The elevator doors opened.  We were pulled back in to the insanity that has consumed our lives over the last 4 plus years.

Leaving mom yesterday, I heard my dad's voice in my head, "She was my doll."