Lessons Learned As A Care Giver

Care giving for my mom contributed to my poor health.  I don't know how it happened, how I fell out of the habit of eating well and exercising.

I cooked every day for my mom when she was living at home with me; making food that would help give her more good days, using food as medicine.  It worked.

Everyone in my house felt better when I was cooking every day.  It was stressful for me, trying to make food that everyone would eat.  Often I found myself preparing 2 or 3 different dinners in order to satisfy everyone's palate.  The preparing of vegetables, the cooking and the cleaning, consumed a good part of my day.  Some days, I didn't feel like cooking.  I forced myself.

I compromised my own health to try and make everyone happy.

You know what happened?

No one was happy, not even me!

The holidays brought "Wooo Hooo Time!"  We drank and ate the American diet.  It was the big last hurrah before I became physically ill.

The stress from care giving is real.  It is a silent killer.  Care Givers, we are in automatic pilot when we are in the midst of the "doing."  We are constantly in reactive mode.  Ready to jump at any time, day or night.  Rarely do we sleep; one ear is always open.   The stress I experienced was so intense that I could feel my inner self shaking; it became a "normal" feeling.

From my experience, we care givers forget about ourselves.  Folks tell us, "take care of yourself."  But no one tells us how or comes forward to carry some of the burden so we CAN take care of ourselves.

I don't know how I could have cared better for myself with my circumstances.  I feel many care givers who are in the thick of caring for a loved one have high stress too and are lost.  I don't have a solution to offer.  Unfortunately, based on my personal experiences, no one cares about the care giver, not family, not doctors ... no one.  It is lonely and difficult to cope with the burden of being a care giver for someone who is terminally ill.

Nursing home wait lists do not exist.  You may be told that you are on a wait list but when you call to see if there's a bed available, the same answer is parroted,  "No, sorry, no bed available."

All nursing homes are alike.

Just because we place our loved one in a facility doesn't mean our care giving duties are over.  It's important to stay involved with the care being provided.  Creating a happy environment for our loved ones takes work, it requires everyone to communicate.

I spent 7 months at the nursing home; every day I visited.  At the beginning of my mom's stay, I was at the nursing home both day and night.  My mission was to educate folks on Lewy Bodies Dementia and show them techniques on how to communicate with my mom to ease her agitation.  It was a struggle. I did not give up.

Fortunately, I was heard.  I wrote a lot of letters.  Changes occurred.  The nurses who are part of my mom's care team are phenomenal.   We communicate.

I am grateful for Mom's nursing home.  Unable to visit Mom for 10 days, the staff at the facility stepped up their game.  Mom was okay, she was not agitated; thanks to the homeopathic remedies she is given every day.  She lost about 7 pounds while I was sick. I couldn't make and bring her sandwiches.  The facility gave it a good effort, they made her sandwiches that she didn't like.

Mom has declined since I got sick.  She always seems to fall asleep when I visit these days.  She can't walk as far as she once was able to walk, her legs are sore.  She doesn't really recognize me; it makes me sad.  She does recognize my voice when I call out to her when I see her, "Hi Ma!"  I exclaim in a happy voice.  "Where are you?"  She replies with eyes closed as I am standing in front of her.

As for me, I am going to live.  I finally decided to see an MD to get myself checked since being in the hospital.  Not sure where to turn, I visited the only medical doctor on this planet that I trust... my mom's doctor.  I saw him yesterday and he told me that I am on the right track.

I've been using food as medicine on myself.  I feel better.  I am choosing to keep my gall bladder and doing everything that I can to solve my digestion issues.  Acupuncture, Reiki and Massage Therapy are helping me to heal and release the stress that I had built up over so many years as my mom's care giver.

I have learned how important the liver and gall bladder are to good health.

I have given up coffee, alcohol, dairy and all gluten.  I am done eating processed foods, nor do I eat out in restaurants.

The pain in my right shoulder is gone.  I am sleeping at night again.  No more night sweats and hot flashes.  I have lost 26 pounds since I got out of the hospital.  I feel better.  My cloths fit again.  I am on the mend.

If I had this to do over again, I would not waste my time visiting nursing homes and getting on a wait list.  Wait lists do not exists; not when the home realizes the patient has Lewy Bodies Dementia.  I would visit homes that have beds available and pick one on the spot.  I have learned that all facilities are the same, what makes the difference is the patients advocate and family visiting their loved one once they are placed.

The false hope of a bed opening "soon" was torture.  I waited a long time.  The waiting was hard and made more difficult by family that didn't understand the burden I was carrying alone.  It was hard to forgive, but I have forgiven everyone. Not sure if I will be forgiven but at this point in my life, I don't care, the ball is out of my court.  I can't control how anyone in my family reacts to the tragedy of our mom's terminal illness or me.  All I can do is take care of me the best that I know how because this journey with my mom is not over yet. Mom still needs me.

My Cure For White Coat Syndrome

I am feeling better; finally pain free!  I still have my gall bladder.

My blood pressure has returned to normal.  I stopped taking Cordyceps which I had been taking to keep my blood pressure low and my cholesterol good.  

Today, I woke up and prepared breakfast for myself.  I took my blood pressure and it was 143/84.  I had a little headache so I decided to eat a small stalk of celery.

Within 5 minutes, I took my blood pressure again and it was down to 117/74.  

Celery is amazing.

It is a natural nerve tonic.  It has chemicals in it that flush stress from the body and relaxes the blood vessels so blood can pump without extra work for the heart.

I have witnessed the power of celery first hand.

Take the celery test yourself.

Take your blood pressure.  Eat one stalk of celery.  Take your blood pressure again.

Celery, it lowers my blood pressure.  It keeps me calm.  I can assure you, the next time I visit a doctor, I will be seen munching on a celery stick in the waiting room.  Finally, a cure for "White Coat Syndrome!"

The Celery Cure for High Blood Pressure

My blood pressure is gradually coming down.  It had gone up 10 points a day while I was in the hospital.  It is coming down by 10 points every day now that I am home.

One of the things that I had learned while caring for my mom is the power of celery.  It lowers blood pressure fast.  I have been eating a lot of celery lately.  If you feel your blood pressure rising, eat some celery.

In the hospital, my husband remembered the celery cure for high blood pressure.  We asked the dietitian for a stick of celery.  She looked at us like we were nuts and told us that they don't have celery.


I am grateful that I cared for my mom all those years.  It's because of my experiences with my mom that I am able to help myself today.  All the the time I sacrificed is allowing me to help me to save my life.

I love my mom; demented and still able to help me.

I Am Alive! I Survived the Hospital.

The last seven days of my life have been like one out of a science fiction horror movie; the kind that made me lose sleep at night when I was a little girl.

I never had the Gall Bladder surgery, my blood pressure was crazy.  No matter how many pharmaceutical drugs I took, nothing worked.  My surgery was on again, off again.  The first time it was cancelled was because of my blood pressure.  The plan was that I would go home, get my blood pressure under control and then schedule the surgery.  

I had a fever like I have never had in my life Monday night into Tuesday; surgery... ON.

Everyday, I watched my blood pressure rise by 10 points.  Nothing was working.  

Everyday, the Pharma Goon Squad came into my room and lectured me on managing my blood pressure.  

"I DO!  I just don't do it with pharmaceuticals.  I see a Naturopath Doctor, he recommends alternatives that are working for me.  I couldn't take my supplements because I was vomiting bile."  I attempted to explain how I care for myself.  

It was as though I had no voice and no say about ME!  I was chained to a bed with an IV needle in my arm.  Pumping me full of fluids, continuously, Sodium Chloride.  My fingers were swelling like balloons.  I had to take off my wedding ring.

"Hey, do you think pumping all this Sodium Chloride into me is causing my blood pressure to go up?  Too much Sodium Chloride is known to raise blood pressure."  I asked the nurse.

"Oh no, it's different.  It won't raise your pressure."  She answered like a trained monkey.  It made no sense to me, sodium, is sodium.

My surgery was cancelled at the last minute because my blood pressure wouldn't come down.  It was 200/100 and rising.  The surgeon feared that I would die on the table.  

"Ok.  Fair enough, when can I get out of this hell hole?"  I asked.

Let me tell the story of how we got to where I am today, it is all true... every word.

Sunday, the ER folks did a great job to keep me comfortable.  The ER Doctor was awesome.  He gave me confidence.  

Gall Bladder pain is the worst pain I have ever experienced.  It lasted about 13 hours.  The nurses who cared for me were amazing, they all made sure that I was pain free.  God love them for that... please.

Monday, I woke up and that's when the Blood Pressure lectures began.  Every one lectured me... no one would listen.

I have one lapse in judgement and everyone thinks I am "one of those junk food junkies" and needs to be on pharmaceuticals.   It is unheard of to have someone without at least one pharmaceutical that is taken for one thing or another.  It felt like the vultures where hovering over my bed when the students would come around every morning with the Hospitalists.

I asked the Hospitalists on Tuesday morning, "Doctor?  Am I going to live?"  I was serious.  He shrugged!  He SHRUGGED at me and walked away; no words of encouragement.   No wonder my blood pressure was elevating, I was being led to believe that I was going to die if I didn't do what they wanted me to do.

They wouldn't listen to me.

My blood was drawn and tested.  All tests were good, nothing weird.  My cholesterol, my blood sugar, everything was good.  Of course it was, I eat well and do my best to take care of myself.  I strayed one damn day and ate a fucking cheeseburger!  (excuse my language, it is the only word to express how angry I was with the hospital doctors not listening to me.)

The Cardiologist visited me on Tuesday afternoon and immediately pissed me off.  I didn't want to see him but they sent him anyway.  I felt as though I had no rights.

"I have 6 rules."  He starts out his conversation with me.

I was in pain; I had just been given a shot of dilaudid before he came into the room.  Thank God.

"Rule 1..." he continues as he stands at the foot of my bed and points his finger at me, "...YOU LISTEN!"  He commanded.

Are you kidding me?  I thought to myself.  I was in no mood for this right now.  I was not at my best, my thinking was now cloudy because of the pain med.  I laid there, he had me captive.

Laughing and joking, I only remember one other rule that made me feel so uncomfortable I didn't know what to say or do.

"Rule whatever... YOU will have sex three times a day!"  He said, making assumptions about my sex life.  My sex life was not what I was in the hospital for... it is my gall bladder dummy.

I was so mad at this point, I couldn't wait for him to get the hell away from me.  

My blood pressure went up.  

The nurses were freaking out, they all believed that I was going to stroke out or have a heart attack.  I saw the worry in their faces.  I wasn't sure if I was going to make it.  I started to believe that I was going to die.

I started to worry more.

My blood pressure went up.

More lectures were sprinkled throughout my stay... hmmm, wonder why my blood pressure wasn't going down?

It was time for an echo cardiogram.  The doctors were not finding any reason for my blood pressure going so high; off I went for the tests.

The technician was a big burly man.  He told me that he would make this test discreet and keep me covered while he pressed the ultrasound wand over and around my chest.  Great.

Then...

"OK.  Time to rip your cloths off!" He stated as he grabbed the top corner of my hospital gown and ripped open the snaps.  

I was shocked!

"You better not let my husband catch you!"  I snapped back.  

I didn't know what to do.  I didn't know how to handle this awkward situation.  Now, I had to lay on this table while this freaking weirdo rubs a thing that looks like a big dick all over my chest in my boobage area!  I wanted this to be over and fast.  I closed my eyes.

And the doctors wondered why my blood pressure wouldn't go down?

No one would listen to me.

About 4pm, I had another Gall Stone attack; one of my stones decided to pass.  Oh God!  I still had 30 minutes to wait for more pain med.  I broke out into a sweat.  I asked the nurse if she could cut me some slack.  

"Sorry Dear.  You have to wait."  She answered back.

I began to cry.  I didn't think I could make it.  I sucked it up.  I started to breath.  That's when I realized, I couldn't take deep breaths, I couldn't catch my breath!  I got more nervous.  The pain became more intense.  I thought I was going to pass out.

I prayed.  I began to miss my husband and feel regret for never having a honeymoon.  I cried.

The nurse came back.... Ahhhhhhhhhhhhhhhh.

My roommate was a 30 something young mom who had an appendicitis attack earlier in the day.  She had emergency surgery and was feeling better just when I was feeling my worst.  

"Do you mind if my family visits?"  The girl asks through the curtain.  I kept the curtain shut.  I didn't want to see anyone.

"No.  I don't mind."  I replied.

About 5 pm her family arrives.... her ENTIRE family.  Our room was small and very warm to begin with, add 10 or so people (including little kids); it quickly became like an oven.  

My head was pounding.  I felt like I was having a heart attack; gall bladder pain feels like a heart attack.

I had to pee. 

I couldn't get by the crowd.

I buzzed for the nurse and asked her to kick everyone out.  I couldn't handle it anymore.  It was like sitting in their family dinning room during one of their family visits.  It sucked.  Their conversation was annoying, especially the loud mouth with the big bellowing voice.  

Were these people for real?

I made my roommate cry.

I didn't care.

All the high blood pressure medicine that they gave me was the same medicine my mom was given.  I felt like I was my mother!  I was getting the same readings for my mom as they were getting on me.  I began to try and solve the problem.  "What's similar between Ma and me?"  I asked myself and thought about for hours while I laid in bed.

Could it be the gluten in the pills?  Maybe the medicine isn't being absorbed because I shook up my villi in my intestine by eating that big honking gluten filled roll with that big fat juicy cheeseburger?

I tried to talk to the doctors about my thought; no one would listen.  I was discredited and dismissed.

Wednesday, I was scheduled for surgery at 10:30 am.  I was given several injections of Heparin to prevent blood clotting; I have a DVT history.  Again, I was not allowed to drink water; I was thirsty.

4:30 am, the student doctor who visited me every morning; woke me up to lecture me about my blood pressure.  She would ask me a question and when I began to answer she put the stethoscope in her ears and took my blood pressure.  I was silenced.  

Her body language was crossed arms.  

"See your body language?  You are not listening to me.  I am the boss of my body.  You do understand that, right? "  I stated to the student doctor, waving my finger across her, showing her what I was seeing.

"Oh, it's early."  She answered.  

"What?  Please get out of here and do not ever come back.  You are part of the problem.  Get out!"  I screamed at the future doctor.

I did not want to see any of the Pharma Goon Squad that morning, I requested that they stay away.  

They did.

Surgery was cancelled.

I was discharged.

I am feeling much better.  

Fenugreek is making me feel better.  My first night home, I lost 12 lbs of water... I am now down 20 lbs since my hospital stay.  I had gained 13 lbs in 4 days while at the hospital.

Through out this experience, I thought of my mom.  I am grateful that I was there for her and acted as her voice.  We all need a strong voice to fight for us.  The majority of Doctors do not believe in natural medicine, period.  Doctors do not believe in including the patient as the head of the care team; it's my body, it's my life... why not?

My conclusion:  There's no profit in healthy people.  We have to speak up for ourselves.  We have the power of NO.  

Pending Surgery

Sunday morning, I woke with excruciating pain that made me feel like jumping out of my skin. I thought it was gas pains. The pain intensified. My back was aching where my angel wings would sprout if I were an angel. 3 days later, I am still in the hospital. I had a wicked gall bladder attack. I have gall stones. Last night, I woke with a high fever and chills. Plans changed. Instead of going home today, taking antibiotics for two weeks and then scheduling surgery... It is happening either today or tomorrow. Wish me luck. My next post, I will share more of what I have learned about gall bladders and our diets. Tid bit... Did you know that if you have pain on the right upper back/ shoulder area with pain under your right rib cage... Could be your gallbladder.

Coconut Oatmeal Cookies - Gluten Free

Coconut Oatmeal Cookies

I'm a big fan of food as medicine where organic and natural foods contribute to improved health and happiness.  My mission is to create food that is not only delicious but satisfying. 

These cookie treats are delicious and nutritious.  Creamed Clover Honey (found it at Trader Joe's) adds a buttery flavor and acts as a natural antibiotic.  Shredded coconut keeps the cookies soft and chewy.  Coconut also has  numerous health benefits.  Fenugreek's maple flavor enhances the oatmeal while helps to naturally keep blood sugar from spiking while acting as a diuretic.

Here's a cookie recipe that everyone seems to enjoy, especially my mom.  

Preheat oven to 375 F.

Ingredients

1 cup Pasture Butter melted

1 cup Organic Dark Brown Sugar

1 cup Creamed Clover Honey

1 tsp Fenugreek Extract (or Powdered Fenugreek)

1 tsp Organic Free Trade Vanilla Extract

1 egg beaten with 1/2 tsp Sea Salt

1 cup Bob's Red Mill Gluten Free All Purpose Flour

1 1/2 tsp Aluminum Free Baking Soda

1 tsp ground Cinnamon

4 Tbsp Lecithin Granules (Mom used it as an alternative to the Excelon Patch - good for overall health)

1 cup Shredded Organic Coconut 

2 cups Organic Oatmeal 

Instructions

Melt the butter.  Add the brown sugar and clover honey and mix well.  Add fenugreek and vanilla extracts,  mix well.

In a separate bowl, mix gluten free flour, baking soda, sea salt, and cinnamon and lecithin granules.

Add the flour mixture into the butter mixture; mix well.

Add the shredded coconut and oatmeal.

Mix well.

Take about 1 - 2 tablespoons of raw cookie dough and roll into a ball between the palms of your hands and gently flatten.  Place on a cookie sheet that has been lined with parchment paper.

Tip... have several cookie sheets lined with parchment paper and place all of the cookie sheets in the oven at the same time.  Bake for 8-10 minutes - when the cookies are golden (not burnt) they are ready.  Allow to cool.

The Action Figure Mobile

Looking in the rear-view mirror.... ACTION FIGURE MOBILE!

Friday was a beautiful day; a good day to visit my mom at the nursing home.  Driving along 3A, music playing, singing and feeling good about my life; I noticed something odd in my rear-view mirror.

On top of the car someone had glued action figures.  Lots and lots of action figures.  Spiderman stood in Super Hero fashion, holding his fist to the air with his blue cape flapping in the wind.

I laughed out loud.

Hoping for traffic to back up so that I could look and snap a picture for posterity (and this blog post); the traffic light turned red.

I wondered how many motor vehicle accidents the Action Figure Mobile has caused?

I stopped just before I took the right turn on 2A, camera ready, I waited for the car to pull up beside me.  The driver stopped too.  She didn't seem to want her Action Figure Mobile photographed.

I got a picture anyway.

Action Figure Mobile

Warm Kale and Strawberry Salad

Warm Kale and Strawberry Salad

Today, I decided to look through the fridge and create something healthy for lunch.

I had a bunch of Kale that needed to be cooked.

Yesterday, I bought strawberries.

1. Wash and cut the Kale crosswise, starting at the top and working my way to the bottom coarse end.  I discarded the bottom stems.
2. Add a little Sea Salt to the cut Kale and tossed it in a big bowl.
3. Wash the strawberries (about 3-4 strawberries per dish) and cut them in half lengthwise.
4. Chop fine 3 cloves of garlic.
5. Put 1 tablespoon of good quality olive oil in the bottom of a big sauce pan and heat the oil on medium heat.  
6. Add the garlic when the oil is hot, stir it around quickly and then add the chopped Kale.  
7. Mix it around, cooking the kale so that the leaves are soft; about 5 minutes.
8. Remove from the heat and put the Kale into a salad bowl.  Top with a little Sea Salt and Strawberries.

Mmmmmm.

A blast of feta cheese or goat cheese would really spice this up.  Next time, I will try it with cheese.