The Lewy Roller Coaster

Our day yesterday had lots of shifts and changes, unexpected surprises too, both good and bad.

My mom saw the Neurologist yesterday and she was retested.  She's declined significantly.  In November 2009 my mom scored 14 out of 30.  Yesterday she scored 7 out of 30 answers correct.  She felt stupid.  She told me that she knew the answers but she just couldn't find the right word.  She hates the test.

"I don't want to do that test anymore!" My mom exclaimed as soon as she got in the car.

My day went down hill fast.  She was mad.  In the doctor's office she even looked at me and mouthed, "Wait till you get home."  The doctor saw and that's when he suggested Exelon patch.  My mom shook her head no, she didn't want it.

I ran out of Phosphyltidal Choline.   The doctor told me that Exelon works similarly to it, I'll get my mom back on the choline and see if it tones down her behaviors.

My mom was agitated yesterday, no... she was mad.  She blames me for her trouble.  She told the doctor that I keep her captive.  She did not like the doctor's idea of going to Day Care, she was shaking her head no as she said, 'I won't go!"

The doctor and I ignored her and he continued to give me options for respite.  I told him that I've only had 4 hours off in the last 4 months.  I also told him that we want to keep my mom home but that I need help.  He is getting us hooked up with help through the hospital.  Yay!  A Social Worker who can help us to navigate the system, get my mom the care that she needs and the regularly schedule respite breaks that I need.

Mom was so mad that she didn't want to go in the pool.  None of her bathing suits were good enough.  None of mine were good enough either.  Bitch, bitch, bitch.  I got pissed and lost my patience.  I raised my voice, I just couldn't handle her negative tone, the NO's blew any resemblance of calm that I was mustering up.

I figured I'd go in the pool and to not let my mom's insanity affect me.  I saw my mom in the back yard, so I figured she'd be fine for a few minutes while I put on my suit.  I was wrong.  My mom took off.  She opened the back gate and walked away in heavy jeans and a sweater.

My husband took the day off yesterday so that I could call respite services and arrange to get some help.  We both got in the car and went out looking for my mom.  Our street is long and winding so we headed up the street, guessing that my mom began her journey turning left out of the yard.  She seems to always turn left.

We drove slowly up the street, looking in yards for my mom.  I began getting nervous.  I prayed a Hail Mary prayer, asking her to find her for us.  Just as I turned a corner, there was my mom, standing under the shade of a tree.  We pulled up and my husband got out of the car and asked her how she was doing.

"Oh, I'm so glad you got my call."  My mom said to me when she saw me.  She got in the car.

"I'm not going to your house.  I want to go home.  No wonder Brian is so quiet back there, I'd be quiet too.  I don't want you to come in my house."  My mom rambled on and on.

I didn't know what to do.  I turned and looked at my husband in the backseat and he didn't know what to do either.  Then he started to talk to my mom, he knows that my mom loves men and does whatever they say.  He was getting through to her, she started talking about her shoes.  She believes her shoes were stolen, even though we put them in her closet on the special shelves designed to hold shoes before we went to the doctor.

I dropped them off in the driveway.  My mom thanked me for the ride and went inside with my husband as I drove away.  I thought I'd try the old switching my shirt routine to get her to like me again.  My husband had her calmed down in her room and set her up with some sitcoms.  We left her alone to rest.

We went in the pool, my husband and me.  It was awesome.  No Ma asking questions and interrupting conversations that I'm having with my husband.  We got to have a conversation like a normal couple.  It was awesome.  It reminded me of our days at my old house where we would float in the pool and talk about different subjects.

It was a beautiful pool day and I knew that I needed to get my mom in the pool.  I went up to her room and apologized.  I know that even if I didn't do anything, if I apologize she'll come around.

"I'm sorry Ma.  I was wrong for getting upset with you.  Will you forgive me?"  I said very humbly as I continued to coax her to come to the pool.  "Why don't you come in the pool.  Here's a nice suit that you can wear.  I'll leave it here and you can make your own decision.  The pool water is perfect and I don't want you to miss it."

Care Givers we need to get used to eating crow, something that is really tough to do as burned out as I am.  Part of me wants to tell my mom to do all of us a favor and die.  She is a major drag.  I have no life because I chose to be her Care Giver.  I'm not sure I'd do it over again, not unless I had family commitment to help either through physically or financially help.

I went back to the pool.  A few minutes later my mom came out the door holding her sized 24W swim suit.  She was fully dressed in her jeans and sweater.  I said to her. "Ma maybe you should put your suit on in the house?"

"No, I'll put it on in the pool."  She replied as though there was nothing wrong with her skewed logic.

"Your cloths will get wet."  I answered back.

"No they won't."  She said back.

Then my husband said, "Why don't you use the garage to change into your suit."

"That's a good idea!" My mom said to him as she walked into the garage.

I got out of the pool and helped her.  She was worried that "the people" were watching her.  I joked with her and told her to give them all a thrill.  We put on her big bathing suit which looked like a sun dress on her, hanging down to her knees.

Mom was finally in the pool.  I swam around a little with her and then I got out so that I could make the call for respite.

I called the Visiting Angels.  I had a nice conversation with the woman who runs the organization.  Long story short, she's coming on Thursday with a potential "buddy" for my mom.  Someone who will come and swim in the pool with her or take her shopping.  My mom wants a man buddy, but it's a woman dominated field with few men taking on the role as a Respite Care Giver.  I'm looking forward to Thursday and hope that my mom likes the Visiting Angel.

While I was on the phone with the respite woman, Marty showed up unexpectedly.  He was driving down 93, on his way home from work and he decided to pass his exit so that he could visit Ma.  My mom was psyched to see Marty, it's been six months since he's seen us.  Marty always makes my mom happy, he has a way of making her laugh out loud.

I asked Marty if I could take my mom to his house for a few hours to go in the pool with him.  I asked him if he'd help me by taking Ma for a short visit.  I told him that I'd even bring lunch for everyone, food that I know won't twang my mom's brain.  I didn't get an answer, I got a nervous laugh.

I told Marty how Ann is back in my life and helping.  I told him about the Visiting Angels and how Ann is paying for a few hours of respite for me, respite that I need or I fear I'll end up dead before my mother.   I also told Marty about the book we all need to read, "The 36 Hour Day", a book that will explain what is going on with our mom.  We all need to understand the illness because we could all end up in the same boat as our mom, living in fear, paranoid and delirious.

It was awesome having Marty come to visit.  I wish he would visit more often, his visits brighten my mom's day more than anyone on this planet.  Look at the smile on Ma's face!

Yesterday we were all over the emotional map with my mom.  We were on the Lewy Roller Coaster most of the day yesterday.

The day ended well.  She went to bed happy because Marty came to see her.  I took pictures, pictures that we can all look at one day and remember the fond memories we had with Ma before she gets her other wing.

Yesterday she told Marty, "I am an angel you know, I have one wing and will get my other one when I die."