I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

28 September 2010

Wild Weekend With Lewy

My Ma, happy to hear that she
isn't in a
nursing home and will come home
 It's been a wild weekend in the ER with my mother and her nemesis, Lewy.  She appears to have moved to the next level of Lewy Bodies Dementia; the hospital stay over the weekend really twanged her brain strings.

Saturday morning, I was ready to leave for the baby's party in Maine, my mom was slumped in her chair.  She was not very responsive, eyes rolling back and all she could say is, "I'll be OK."  Over and over she said this to me.  She kissed my hands and thanked me for everything that I have done for her.  She thought she was dying.  Just moments before this episode, she was joking and laughing, excited to go to Maine to see her Great Grandson and dance with him.

Her blood pressure went sky high, about 235/95 in no time, with no warning.  She had gone outside in the humid warm air.  I've seen her like this in the past so I gave her the homeopathic remedy that Dr. Barton had prescribed.  She couldn't remember how to hold the little blue shot glass.  Finally, she did.  It revived her like it had in the past.  She was walking around and could raise her arms.  Her speech was back too.  I put the phone down and didn't call 911.  911 is my last resort.

We called Jay and told her we weren't going to Maine, instead I invited her to my house so that she could visit with Rachel.  We were going to enjoy the eggplant that I had made and the sauce made from the B rated tomatoes from the farm stand.  I brought my mom with me for the ride to my brother and sister-in-law's where Jay lives.

Along the way, my mom was singing along to the music and having fun.  She was back to her self.  Once at Marty's she tried to got out of the car and then she told me that she was dizzy.  "Sit back down, Ma."  I said to her.  She forgot how to get in the car.  I began yelling, "Marty!  HELP!!"  No one heard me.

I got her in the car and buckled her in; I ran in told everyone, "Help!  I think Ma's having a stroke!!"

Marty came with me to the hospital.  Ma was not speaking words, she was making lots of ssss sounds; saying what sounded like a conversation in her mind but what we heard from her was "swish ssshwwwishs shspwsssh, OK?"  Over and over she talked this way, pointing to the trees and the highway that we were driving.  I heard Ed's name at one point when she pointed to the trees along the highway, trees where Ed was showing himself to our mom.  He made her smile, she was happy to see Ed.

The ER was a long wait; we had to wait for 14.5 hours before we saw the physician who would admit my mother.  Because we didn't take an ambulance ride, my mom was put at the bottom of the list... what a shitty rule.  My mother was having a hypertensive emergency and she has dementia.  The nurses in the ER were awesome.  I do believe they made the right decision to keep her in the ER so that they could monitor her.  The head nurse in charge was worried that my mom wouldn't be cared for upstairs in the bed that was waiting for her, without doctor's orders.  We waited.

My mom had a temperature of 102 when she finally got to her room.  The doctor was very good that saw her, she understood Lewy Bodies Dementia.  She put on the order, NO ANTI-PSYCHOTIC DRUGS to be administered.  She outlined the diet that my mom could eat based on what I had told her.  The doctor was even open to homeopathy and the natural treatments we use on my mom to give her more good days.

When my mom was settled in her bed at 1:30am, Brian and I went home for a little rest.  I slept for only 4 hours when I jumped up to call the nurse caring for my mom.  It was 6am, the time she wakes up.  I was worried that she would be frightened, not knowing where she is or what was going on.

"She's doing well.  I just checked on her and she's sleeping."  The nurse told me.

"Oh good.  Call me if she is agitated and I'll come back immediately."  I said to the nurse in reply.

7:11am the phone rang.  It was the nurse, asking me to come back.  My mom was up and not allowing them to do anything to her.  She was screaming and scared.  I talked to my mom, she started to cry.  I told her that she was in Lahey Clinic and I was on my way back to be with her.

Mom was happy to see me.  She stopped crying.  I ordered her breakfast, scrambled eggs with a slice of gluten free bread.  She was so happy eating forbidden food... bread.  She looked at it and said, "OOOOO, CAKE!"

Ma listened to my iPad, singing and tapping her hands on her legs.  Music calmed her.

Marty and Donna came in the room around the same time, within minutes of eachother.  My mom lit up like the Citgo Sign in Fenway Park, she was excited to see her family with her.  Having us around her helped her to relax a little more.

The doctor came in and examined my mom, her blood pressure reading was 120/39.  She asked me what I thought of my mom's condition, how far off from her baseline that she is; I knew she was asking me in code, "do you want to keep her here?"

"She looks great!  Can I take her home today?  I worry about the food choices, there aren't many and what I feed my mom matters."  I said to the doctor.

"Sure, she can go home today (Sunday)."  The doctor said.  "Would you like a physical therapist to work with your mom?"  She added.

I agreed that PT would be super for her.  Even better that the therapist will come to the house to work with my mom.

The doctor wanted her to see the Neurologist on call before discharging my mother; it was the Neurologist that had seen her the night before in the ER.  She saw my mom pretty quick when we were in the ER.  The doctor couldn't admit my mom, she did recommend admittance.  I really like this Neurologist, she gave me a double look with a big smile when I told her that my mom sees an ND who gives her acupuncture.  I'm not accustomed to traditional doctors being receptive to how we treat my mom's illnesses.  I was pleasantly surprised and it put me at ease.

The doctor told my mom, "Josephine, do you want to go home today?"  My mother was so happy, she said, "YES!"  Then she grabbed the doctor's hand and told her that she loves her.  "I love you!" She said to her as she picked up her hand and kissed it.

We then waited for the Physical Therapist and the Neurologist.  And we waited.  Lunch came.  I let her have cottage cheese as a treat.  Big mistake.  She went completely ape-shit.  Donna couldn't believe how fast she shifted from laughing to total anger and agitation, ready to punch someone out.

The Physical Therapist came and walked with my mom.  My mom wanted to leave.  My mom's blood pressure was high after the walk; the Physical Therapist told the doctor who wouldn't let my mom leave until her BP came down to 165/80 or less.  Of course her BP was 200/95.  My mom was given more BP meds by mouth, which was a challenge.  She couldn't remember how to take a pill.  FUCK!  Is all I could think to myself.

Donna was able to get her to remember how to take her pills, somehow... thank God she was with me to help.

We then needed to wait another hour for the medication to work to lower her BP.  My mom was not happy about this, she wanted to leave NOW.  She became more and more agitated.

I played music on the iPad, mom had a private room, we shut the door so not to disturb anyone.  My mother was pissed.  She wanted to get out of bed.  She had an alarm attached to her because she's a fall risk, not steady on her feet.  I kept her down as long as I could, then I started to dance.  Donna joined in and we danced for our mom.  We had a fun time, it was a riot.  My mother laughed but quickly got bored with our entertainment.

"Come on now, go get the car!" She demanded.

My mom was out of bed.  She wanted to see her cloths and shoes, she had had enough of the hospital.  My mom became more agitated, she was mad.  She was yelling at me with an angry face that made Donna and me laugh out loud.  Of course our laughing made her more mad.

I got my mom's natural remedies from the nurse.  I gave my mom some hyoscyamus to calm her down.  It did calm her a little, at least she didn't want to kill me anymore because I blocked her from going out the door to yell and punch out the nurses.

Donna had a brilliant idea, "let's wheel her around in a wheel chair."  Our goal was to keep her calm, to keep her from walking around making her BP elevate.  If it was high, she would have to wait longer.  Waiting was the root cause of her agitation.  We were in a weird catch-22 situation.

Finally, the nurse came to check her blood pressure, she was right on time... one hour had passed.  My mom's BP was 168/70.  3 points higher than what the doctor had said it needed to be in order to be discharged.  The news bummed my mother out.  The nurse told her that she could put her pants on, but needed to wait for the IV sites to be removed as well as the heart monitor stickers.

Mom waited no time to get dressed, putting her pants and shoes on first, waiting for word that she could leave.

"Can you ask the doctor if we can just take her home?  I'm worried that keeping her here longer will only make her blood pressure go up higher.  Please, for my mom's sake, let me take her home.  She'll calm down if she's home."  I reasoned with the nurse.

A few minutes passed and the nurse said, "Ok, you can go home.  Let me go and get the discharge papers.  You can get dressed now."

Ma, was pissed.  "I'm waiting over here...
Go Get the Car, NOW!"
My mom was psyched.  But, we still were not moving fast enough.  She put her shirt on inside out and backward; not allowing us to fix it for her.

She wanted to be out of there very badly.  "Get the car!"  She would demand of my sister and me.

We got home and my husband greeted us.  He opened the car door for my mom and she was happy to see his face.  She knew that she was home, safe and secure as soon as she saw Brian.  Brian looked at my mom's  inside out and backward shirt, puzzled... I gave him a look, "don't ask."

Mom was agitated, she wouldn't sit still.  She was not steady on her feet; I was worried that she'd fall.  Finally, after having one of my one pot meals, loaded with herbs and spices that help her cognition, she settled down, put on her nightgown and went to sleep.

I forgot to give her Ashwagandha before bed.  I didn't want to wake her to give it to her.  I took a chance.

4am... BANG!  CRASH!

I sprang out of bed and flew up the stairs.  My mom wasn't in her room.  Panic hit.  I hollered for her, breaking the morning silence, "MA?!"

"I'm over here!  Help!  I can't get out."  My mother said in a panic.

She was in my MIL's office, in the dark, frightened.  I helped her back to her room and tucked her in.

The next morning, I noticed that she had moved my MIL's heavy standing floor mirror.  I wondered where my mom got the strength to move it as she did.  She also was so scared, she pee'd on the floor.  Nothing was broken and my MIL was super understanding, she didn't get angry.  I cleaned up the mess.

My mom forgot how to swallow pills yesterday.  She didn't understand what I was asking her to do.  She put her cognition supplements in her mouth and let them dissolve.  They taste disgusting, the taste didn't seem to bother her; normally she'd be bitching about the taste.  I freaked out.  If she can't take pills and or supplements, I can't help her anymore.  I cried.  I broke out in a full body sweat.  I was scared.

After having breakfast with the phosphatidyl choline, her mood was better and once the cognition supplements were dissolved in her mouth, she came back around a little more.  She still couldn't remember how to take a pill.

Acupuncture helped her a lot yesterday.  It stopped her hands and face tremors and her speech was clear.  She was finding all of her words.  My mom was back!

We missed food shopping this weekend, with no food in the house, I knew I needed to stop at the supermarket on the way home.  My mom wanted to come inside with me, shopping for food has always been her favorite activity.  She pushed the cart and walked around the produce section picking out things that she wanted to eat.  Shopping made her feel good.  We walked the entire circumference of the store; she was exhausted after our little trip.  We went home.

I made chicken soup for lunch with lots of spices and herbs that help with cognition, lowering blood pressure and blood sugar.  It worked.  My mom was dancing in the afternoon to Frank Sinatra.  Her balance was better and more importantly, she remembered how to swallow a pill!

She woke up at 4:30am this morning to use the bathroom.  She got lost, taking a wrong turn out of the bathroom.  I heard her awake so I ran upstairs and helped her back to her bed.  She's still sleeping... it's now nearly 8am.

It was an adventure for us this weekend.  It's been years since my husband and I have been in the ER with my mom.  Mom, she appears to have notched down, moving closer to the day where she has no idea who we are or how to do simple things like swallow.

Acupuncture is helping her a lot, it takes the inflammation away from the parts of her brain that are not diseased.  It appears to be holding back the progression, giving her more good days to enjoy before the bus comes for her, taking her to Heaven.

*Morning update:  Tuesday:  Ma is back!  She is better and able to swallow pills.  Her Blood Pressure was 144/70.  Yay!


  1. i don't remember how long this entry was. i know it had to be long because it has taken me a while to read it but it's a great one sue.

    your dedication to your mom. the doctors being receptive to your choice (natural remedies and diet). the patience you have. the struggles you endure daily.

    i can never say enough how blessed your mom's is to have you and you to have her.

  2. BTW...loved the video and the pics. it helped add a visual to some great story telling.

    a wild weekend, indeed!!!

  3. Thanks Roschelle. I had to face one of my greatest fears this weekend, going to the hospital with my mother. I worried about doctor's not being receptive to how we are treating her illness.

    Fortunately, I am well versed in everything that I'm doing with her. Thank God we have a Naturopath Doctor too, that made the doctors a little more relaxed knowing that I wasn't just doing it alone by shopping for supplements that I read a news article about.

    It was intense. I was scared. I prayed. I have another story about my praying, but that is a post for tomorrow.

    Thank you for reading my entire story, it was longer and I cut it down.

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