Invitation to Camp Sue

 Hello!  It seems like a lifetime ago that I was living the dream, caring for my mom with Lewy Bodies Dementia.

I’m updating anyone who has followed my blog here to let you know what’s going on since my mom passed.

I’ve made amends with my siblings.  We don’t hang out but I can be in the same room and hold a conversation.

The experience, everything that I had written in my blog, led me to where I am right now.  As difficult as that time was, the only thing I’d change is how I had reacted.

My mom often comes in my thoughts and I hear her in my head, “takes two to tango.”

Please subscribe to my new blog at http://CampSue4u.blogspot.com 

If you want to check out my YouTube channel, I read cards, and do meditation demos.  You can find Camp Sue on YouTube here:

https://youtube.com/channel/UCA0EYZmLB2FmRud13Ky-8-A

And if you’re on Instagram, you can see how I spend my days.  @you_rocks 

In the meantime, meet Norbert the dog.  Almost 3, a rescue from Louisiana... he is a blast.

Ma's Advice

"Susie, we must take care of our health, it's most important you know."  My mom stated to me about 10 years ago at the onset of her illness; a time I had no idea what this statement would end up meaning to me.

Ma taking a trip to Whole Foods Market

2012

Food was important in my family, everything revolved around food; all celebrations, all gatherings, we always had lots of food.  Unhealthy foods that were slowly causing us to demise into a life of misery and pain.  Lots of bread, pasta and cheese.   We drank milk by the gallons.   Fried foods like sirloin steak tips dipped in beaten egg and coated with Progresso Italian flavored bread crumbs, before being friend in canola oil.  I remember my now deceased brother saying to me one night while I prepared dinner, "Sue, I'd eat shit covered in this coating."  

Our taste buds were skewed and assimilated to the processed food taste.  I can remember fresh vegetables tasting horrible, this was when I was eating processed foods.  No wonder people who are addicted to processed foods, don't eat whole foods, the processed foods change how we taste.  Loaded with salt, sugar and preservatives, our minds are tricked into believing we are eating delicious food. 

Food that will eventually make us all sick and needing pharmaceutical drugs to counteract the ill-effects of the fake foods we eat.  In this sense, as long as we have fast foods, processed and lifeless foods, we will also need synthetic drugs to keep us alive. 

My mom was in a nursing home for the last year and a half of her life.  She needed to be in a place.  I visited her nearly every day and witnessed firsthand what happens to us at the end of a lifetime of poor eating.  I saw old folks, confined to wheelchairs, unable to speak or do anything for themselves.  Drugged and fed food that would not be served at my dinner table, the cycle of illness was steadily working like a fine oiled machine.   It's the system.  The way it is supposed to be, it's what everyone agrees is normal and OK in our society.  I find this whole cycle of illness to be perverted and against all that is good.

For my mom, I promised to do things different, especially when she asked me repeatedly to help her.  "Please Susie, please help me get off all these drugs.  They make me feel worse.  I don't like feeling like this!"  Words that echo in my heart and mind, words that gave me the strength to do everything that I could for my mom to help her have more good days than bad. 

Mom, she began eating just so she could take the recommended dose of insulin each morning and evening.  Her blood sugar was dropping very low and she would begin to shake uncontrollably.  I'd give her a few crackers or a candy bar and she'd stop shaking. 

The more we changed our diets, mom began to reduce her insulin on her own.  She didn't need as much as soon as we removed the inflammatory processed fake foods.  I changed our diet to whole foods.  I made everything fresh and from scratch, even our treats.  Cookies, our favorite guilty pleasure.   Oatmeal, Raisin Cookies with fenugreek, a known blood sugar reducer.  Mom was feeling better.   I was inspired to keep on going, regardless of my critics.

Mom loved food.  She loved food shopping.  She enjoyed cooking.  She missed bread, pasta and processed foods.  I did my best to recreate all of her favorite foods with healthy ingredients.  I vowed to help her with food as her first medicine.  I worked tirelessly.  Researching foods and her health ailments. 

Fenugreek was the first medicinal food that I had come across.  I had learned that it is great for managing diabetes, cholesterol and water retention.  All health issues my mom had been battling for decades.  She was a full blown insulin dependent diabetic on 62 injectable units every day.  Sometimes more if her blood sugar readings wouldn't respond to the initial dose.  Insanity.

I talked to my mom about what I had read about Fenugreek.  I explained to her that it seemed it could help her get her diabetes under control.  She was all in.  We went to Whole Foods Market and we bought our first bottle of Fenugreek extract.  Mom was excited to get home and take her glucose reading so that we could give her one drop of fenugreek in a small glass of water to see what would happen after 15 minutes.  To our amazement, one drop of fenugreek lowered her blood sugar 15 points!  It was this discovery that helped me to help get my mother off the insulin needle.   I was driven to keep on going, even when doctors started to look at me as though I was injuring my mother because I wasn't making her take her drugs.

It didn't take us very long to fix my mom's pancreas.  She began to make her own insulin again and toss all her needles.  It was as though we fixed her with food and fenugreek.  Mom was starting to live again.  She was losing weight and had lots of energy.  Every day we went out somewhere so that she could walk and walk and shop.  Fun times that will remain dear to me until my last day.

I did continue to research foods and began using food as her medicine.  I used fresh herbs and spices.  Foods that were known anti-inflammatory became our diets staple.  Chamomile tea and mint tea included.   My mom was physically becoming stronger but her mind was slowly deteriorating.  Lewy Bodies Dementia will do that to its victims. 

One constant theme that I did notice while caring for my mother, if she ate anything white like bread, pasta, potatoes or anything in a box with preservatives, she would begin to hallucinate and often become frightened.  When I fed her dark greens, garlic, turmeric, coriander or fenugreek, she relaxed and the scary visions would go away.   I noticed a relationship between the fake foods, blood sugar and blood pressure readings. 

I observed my mother and documented what I was witnessing.  I am still amazed.  I believed in what I was doing.  No one and nothing was going to get in my way of following through with something that I witnessed firsthand, over and over again.  Even when my mom needed 24 x 7 nursing care, when caring became too overwhelming for me to manage on my own,  I still brought my mom food every day.  I was her Healthcare Proxy, in essence, I was my mother as far as her health was concerned.  My persistence and creativity allowed me to overcome all obstacles.

Talking to doctors became an art form.  I learned how to do it, thanks to the encouragement of my mom's Naturopath Doctor and her primary care Doctor who is very progressive.  Both of her doctors are my doctors today!  I used my imagination.  I made sure when I talked to any of mom's healthcare professionals about her, I did my best to keep emotion out of the conversation.  I used my honed skill of persuasion, an art form that I had mastered during my professional career as a Sales Engineer.   Studying hypnosis sure did help me to help my mom; I always believed it would just help me to sell more software!

In the end, mom passed in peace with minimal suffering in the days preceding her last day on Earth.  My mother, she proved to me that it's never too late to take care of our health.  Health is most important, without it, life is no fun.  Food choices that I make today are a lot different than those I would have made in the past.  I am now 53, time to live my mom's advice and live the healthiest lifestyle I possibly can. 

Thank God for Ma's Advice!

Mother Love

Rachel with a Damsel Fly in her hair

Everyone has a mother, human, animal… all life has a mother.  Earth is a mother! 

 

I often wonder why we can treat our mothers so poorly and blame them for all the wrongs in the world.  We often have high expectations of our Mom's and when she doesn't bend to our every demand, she suddenly becomes a villain in our lives; responsible for all of our missed opportunities for joy.  

I speak from experience here, I blamed my mother for becoming ill and suddenly believing that I was her mother, the evil villain, the person responsible for her decline.  It felt like my life ended on the day I began to need to wipe my mother's behind for her. 

 

Rendered helpless by my beliefs and emotions, I could not see the true blessings the Universe was showering over me.  I didn't understand that my mother became my daughter so that I could experience motherhood.   Through my time as my mom's caregiver, I experienced a mother's love for a child.   The love I have for my mother-daughter, has shown me that LOVE is the true mother of the universe.  It's out of this love that each of us are here.  Our mother's loved us enough to give us a chance at life. 

I am grateful to be on the other side of the chaos that seems to come with being a caregiver to a parent, especially one with dementia. 

My MIL and I didn't always get along as we do today.  Just a few short months ago, we seemed to loath the sight of each other and the sound of our voices were akin to nails running across a chalk board from days gone by.  Our expectations of each other, ideals that were shielded in the silence of our existence, overshadowed our relationship.

Our troubles heated up when I picked a fight with my MIL.  I attacked her only perceived sense of independence, her ability to come and go as she pleased.  Rachel is an old lady who defined her independence through driving her car.  I was thrilled in the fall of 2012 when she had made a decision to give up driving.  She told us that she didn't know when she felt well enough to operate her car.

I suppose having a head on collision with another motorist who was stopped at a stop sign made my MIL think twice about her ability to drive.  Rachel didn't see the car as she cut a corner way too sharp.  The driver at the stop sign saw Rachel coming and attempted to back up his car to avoid the collision.  He was able to reduce the damage to his car, but his car still needed a tow truck.

The accident shook Rachel up a bit.  She wasn't wearing her seat belt and sustained a head injury.  Rachel refused to go to the hospital and insisted that my husband bring her home, bloodied head and all.  The sight of her coming through the door with blood dripping down her forehead was horrifying.  The following few months would prove to be challenging for our Mother in law and Daughter in law relationship.

In order to solve his mom's transportation issue, my husband took time off from work to help Rachel figure out how she could get around without a car.  The senior center in town, a beautiful place for folks with lots of activities every day and people to spend time, appeared to interest her.   Rachel led us to believe she would take advantage of the senior services.  She didn't.  "Those people are too old." She answered me one day when I asked why she didn't want to go.    Ok… and 90 isn't old?!

The winter months passed.  My MIL had made peace with the fact that she shouldn't drive her car.  Until, last April (2013) Rachel began to feel better and decided she was going to go out to drive her car again.  I was sitting at the table eating a late lunch.  I heard Rachel's car keys jingling.  "I'm going out!"  She exclaimed like a defiant teenager. 

"What?  In your car?  You are driving your car?!  It's 3:30 in the afternoon!"  I lost all feeling in my body.  I began to think of her getting into trouble with her car, causing property damage or worse, killing someone.  I worried about my husband and me being liable for his mom's actions because she lives with us.  I feared losing everything because Rachel  felt the need to operate a motor vehicle, even though she couldn't see very well.

I was prepared for this day, I knew she would drive again because I wasn't able to always jump and take her out at a moment's notice.  My MIL didn't like the idea of having to plan when she could go to the store; her reasoning was "she didn't know if she would feel well enough."  Her logic made no sense to me.  I had to do something to protect us from any potential lawsuit brought on by Rachel's recklessness.

Immediately after she left, I printed out a complaint form from the States Department of Motor Vehicles website.  I filled the form out, writing all the reasons why her privilege to drive should be revoked.  I talked about how she refused medical treatment after her head on car accident and that she refused to see her primary care doctor.  I was scared for the public and didn't know how to get everyone else off the road when Rachel was in her car driving.  The only solution I thought of was asking the DMV to reconsider their decision to allow my MIL to operate her car legally.  She barely passed her vision test when she needed to have her license renewed a few years ago (I took her to get her license renewed!)

I hopped in my truck with the sealed and stamped envelope, drove to the post office and handed the clerk the filled out form to be sent to the states complaint department.   It was a risk, my MIL could find out who turned her in by writing them a letter and asking who did it.  I didn't care.  Our relationship already was horrible and I didn't see any hope for us mending it.  I needed to protect our assets and any innocent person who could possibly be injured in an accident.

My husband was nervous when I told him what I had done; our relationship became a little rocky.  Something had to be done with Rachel who was behaving like a spoiled child with the upper hand.   Fearful of the war that was about to erupt in our home between Rachel and me, tensions grew.  I didn't care.  I was sick of Rachel and her bullshit.  My emotions were still raw with the loss of my mother.

About a week passed and the letter from the Department of Motor Vehicles arrived for Rachel.  I handed her the letter when it came in the mail.  We had stopped talking to each other before the letter had arrived.  I had attempted to explain to her how irresponsible it was for her to drive when she couldn't see very well and admittedly told us she couldn't determine when she felt well enough  drive.  I told her that if she thinks she can drive, she can do everything for herself, get her own food, do her own laundry… "you are on your own."  I stopped cooking for her.  I stopped talking to her.  I began to imagine she was invisible.  I ignored her and she ignored me.  Life sucked around here.

My husband took Rachel to the doctor to get a physical and a note stating she was capable of driving her car.  She mailed the form to the State Department of Motor Vehicles.  She was okay to drive according to the doctor and the state continued to extend her the privilege to drive in this state

Life became rougher.  I was angry that I had to live with my MIL who did not give me any respect.  Never has she wished me a happy birthday, not even my 50th birthday a few years ago.  She didn’t go to my mother's service, boy did this hurt my feelings.  My expectations of her were not being met.  I hated her more for not being something she wasn't able to become, a loving mother in law.   The more loathing I did over my MIL the worse I felt.  Everything was turning to crap around me.  Something needed to change and I knew from past experiences that I needed to be the change.

I went to a Institute for Brain Potential seminar that told me how to deal with highly volatile people.  I learned about personalities and the disorders that many people have, even myself.  For the first time in my life I started to understand narcissism; humans, all of us, have narcissistic tendencies, some of us take it to the extreme.    The course didn't answer all of my questions, it left me asking myself, "how do I get bigger?  How do I fix this?"

Questions remained and my relationship with my family was not improving.  I cried a lot and knew that I needed help.  I found a psychologist to talk to me, someone to help me make sense of the epiphanies I was having about myself and my relationships.  My shrink, she helped me figure things out and peace returned to my heart and mind. 

My heart grew eyes.

I changed myself.  I changed how I viewed my Mother-in-law and every person that is a part of my family.  I realized that our expectations of people when they are not met, is what causes all the troubles in our lives.  Suddenly, things became clearer for me, I couldn't fix everyone's problems, everyone has free will and love, real love, comes without strings attached.  I cut the strings I had attached to my expectations of others and began to focus on myself.  I had learned years ago that the best way to change any situation in life is to change my perceptions.  Only I could change me, only I can control my thoughts and actions. 

I changed.

I filled my heart with love.  I worked every day on myself.  I began to live consciously and became more aware of others feelings.   I practiced communicating my thoughts, minus the emotion that seemed to fuel flames of discontent in the past. 

I began to cook for my MIL and feed her nutritious foods.  She had been eating junk and prepared packaged foods that she would pick up for herself at the local supermarket.  Her health was declining.  She looked horrible.  She continued to drive her car.  I still worried about the innocent lives she could snuff out with her car.  Enough!  If I can't beat her at her game, I will join her.  If I could help her feel better, to have better days, she would possibly be a more alert driver.

I'm not sure what changed my MIL's view of me, maybe it was the day I brought her to get her driver's license renewed a couple months back.  I don't even know when the change in her occurred  I wish I paid more attention, but I changed too and our world was renewed. 

I released my fears and expectations and something amazing happened to me, all my unhappiness was replaced with a sense of freedom.   I chose to be happy and have a full heart, even for my MIL, my husband's mother.

Today, I see her as the woman who did her best to give my husband a chance at life.  She was unwed and pregnant.  She could have aborted him, but she didn't.  Her love for him, even though it may have gone unnoticed, remained strong and caused her to look at me with suspicion.  She loves him, he is her greatest accomplishment in this lifetime.  My husband is her only child, her only son.  I was the "other woman" in his life and she subtlety let me know I would never replace her. 

I didn't want to replace my MIL.  I wanted to include her in our new family, make her part of our lives, give her more good days until her last day…. Just like I did for my mother.  Mothers have lots of love for their children, even if we can't see it, mother's love stay with us long after they have left this Earth. 

Personally, I am grateful to have experienced my mother's love, she may be physically gone but her essence lives on inside my heart.  Mom, she's part of me and I am part of her.  My wish for everyone is that no matter how much you blame your mother for all your troubles in life, your mother loves you and you are forever connected by love.  Free your expectations and experience your mother's love.

The Tunnel of Love

Mom and Rachel

January 2009

"I have a hair appointment tomorrow morning at 11, can you take me?"  My mother-in-law quietly asked me yesterday afternoon.

"Of course, I replied."  Continuing on with my food preparation, I didn't give the request another thought.

Today, 10:50 AM on the nose, not a second earlier and not a second later Rachel and I needed to leave the house to make her hair appointment.  Old folks are funny, set in their ways and hell bent on keeping their independence by controlling every little detail of their lives.  God help anyone who does not fall in line with their commands!

My MIL, now 90, is no different than any other senior that I've befriended in my life.  Old people, when they reach a certain age, start to remind me of children.  The way they shrink and look so small, their frailty and need for help, triggers something in my soul, even Rachel, my MIL, the woman I had not enjoyed living with for the majority of  the last 6 years! 

Pulling up to the hair salon, Rachel looks around at all the cars and says, "Shit!  There's a wait!" 

"Why don't you just go in, see how long, I will wait for you in case you don't want to wait."  I offered politely.

"Ok."  My MIL replied as she climbed out of the truck.

I see her through the window.  I see her hairdresser come over and put her arm around Rachel.  Uh Oh.  The hairdresser looks up at me and waves.  My MIL comes out the door with the hairdresser, puzzled expression on both of their faces.

"Next week.  Your hair still looks good... but come next week, boy will you need a set!"  Her hairdresser cheerfully exclaimed as she walked my MIL back to the truck.

Ah, I was right, she was a week early.  She forgot she had gone last week.  I didn't want to make a big deal out of her memory slip-up.

"Do you want to come out and run my errands with me?"  I offer.

"Sure!  That will be nice.  It's a nice day."  My MIL answered, sitting back with a grin on her face.  It was a freezing cold day, but sunny.  If she considers it nice, I am not going to argue with her.

I drove off to our first stop but not before Rachel decides to talk about dying and what she expects when the Grim Reaper comes knocking on her door. 

"You know, when I die, your mom is going to be there waiting for me."  My MIL blurted out, breaking the silence.

Like a shot, the moment Rachel said this sentence, I felt my mom's presence and nearly broke out in tears.  I had goose bumps on my skin.  Suddenly, I missed my mom and felt her love.  Mom's presence was so strongly that I had to look in the back seat of my truck to see if I could see her apparition!

"I believe you are right.  I believe when we die there's a big party, a celebration of our life with all the people who had passed before us.  I believe you, my mom will be the first one you see."  I said to my MIL, holding back the emotion that was welling up in my heart.

"Your mom, she was the sweetest person I had ever met.  I know she will be there for me.  I know it!" My MIL insisted.

Rachel continued.  "I believe when we die, we enter a tunnel of love.  I remember reading the Bible when I was a kid and the only thing I got out of it is that God is Love.  Love is all there is.  I look forward to being engulfed in God's love and being part of all the love."  Rachel shared, talking to me like I was her best friend.

Today's conversation with my MIL was interesting, I can't help but compare her innocence with that of a child.  Children will ASK YOU "where do we go when we die?"  Seniors, like Rachel will TELL YOU where we go when we die.  I suppose living a long life does one thing, prepares us for death.

What Do You Do?

The anniversary of my mom's passing, Valentine's Day, I received a call out of the blue from a Headhunter asking me if I would be interested in pursuing a job opportunity in my former professional career as a Sales Engineer for software companies.  I was over joyed to receive the call.  I even asked, "How did you find me?"  I stopped looking for work and didn't post my resume anywhere.  He told me that he has a database and my name was in it.  Not wanting to kick a gift horse in the mouth, I listened to him describe the job he had to fill.  It was exciting.  In an instant, I was ready to get back to my former life.

 I was caught off guard.  My resume is out of date.  I took a work hiatus in order to care for my demented mother full-time; that was 6 years ago.  My plan to reintroduce myself to the working world is to write the story of how I cared for my mom so that when I do reach out to my professional network, Ill have something to show for my time out of the rat race.  I feel that I need to account for my time, what better way than to write a book?

Thrilled about the possibility to work again in a field that I enjoyed, I threw caution to the wind and turned my focus to my resume.  The idea of a job where I would work a set amount of hours every week, not have to literally clean up human feces and get a paycheck at the end of each pay period, caused my knees to knock.  Could it be?  Will I find a job as a Sales Engineer again?  Is the job market opening up to people like me, the long-term unemployed, the ones who are labeled lazy and waiting for handouts by some in the Republican Party? 

For a couple of days over Valentine's Day weekend, I began to see myself working again.  I was hopeful.  It felt good.  I saw myself solving business problems with software solutions and communicating with people in business meetings, people who are not hallucinating about wild animals and small children. Imagining a time when I received lots of calls from headhunters vying for my attention to pursue new opportunities, I felt like my life had value once more.

Based on my experiences, too much weight is put on people's careers and work, "what do you do" is usually the first question a new acquaintance will ask upon meeting for the first time.  Saying the words, "I'm unemployed" typically brings a change in the mood, facial expressions change and everything that is said by the non-job holder after admitting unemployment falls on deaf ears.  Unemployment seems to cause people to be classified into a group of outcasts.  The media doesn't help the plight of the unemployed, the news seems to feed on the meme's of those who would be happy if we all vanished. 

It's disheartening.  People like me work our entire lives, making money for the overlords and paying taxes; doing what we can to make more money for ourselves, we feed the hungry giants with our hides.  All of us are disposable when we reach a certain age.  Reaching the age of inequality and unfairness, I wonder if everything is an illusion, a pipe dream that we are all lead to believe will help us achieve our goals when in reality, we are pawns to a more sinister plot.  The playing field is not level; it never has been and unless common people come together, we will forever be doomed to a life of corporate slavery. 

Lots of people are living one paycheck away from poverty, slaving away day in and day out just to survive.  Why can't the ideals of the 60's and 70's be made true and real?  I grew up in these decades, I was a young impressionable little girl.  I believed everything, especially believed that I could achieve anything I set my self out to do because I believed that I could.  My father, he believed in America back then, he believed that democracy would help us all get ahead.  I did too.

Now, it's been almost 6 years since I was laid off from my job.  Experience has taught me that society judges us by what we do for work.  If one finds themselves unemployed, immediately we are judged because we don't have an answer to the dreaded question, "so, what do you do?"  Collecting  unemployment benefits and looking for work are never good answers in today's America.   Citizens turn against each other and feel angry, selfishly thinking only of themselves as they sing, "what about me?  Why should you get a hand out?" 

Well, what about you?  You could lose your employment tomorrow, your financial stream could be cut and you too could need unemployment insurance benefits.  You do realize that we pay for this insurance when we are working?  It's not a handout, it's Unemployment Insurance Benefits!

Long-term Unemployment is like living with the plague.   Few employers want to talk to us, a group of people who are highly educated with decades of experience that could improve the economy and state of our country.  When I told the headhunter that I was out of work for 6 years because I was my mother's full time care giver, he first asked me how old she was (illegal) and then yelled at me when I told him that I hadn't worked in a long time.  He told me that my skills are outdated and that technology changes every 8 months.  I attempted to interject, "But I have very good sales skills, it's not learned, sales is an innate skill."  I was ignored.  The sweet sounding Headhunter was pleasant when he thought I was gainfully employed, as soon as he heard I was unemployed, he immediately discredited my entire work history.  I was insulted.

He would not take my resume, instead he told me that there are people with beautiful resumes who are over looked.  I asked, 'Well, you haven't seen my resume, how can you judge me and my successes?" 

His reply, "You have been out of work too long, no companies will look at you because you cannot prove that you can hold a job." 

I was floored.  I had worked my entire life.  I had a good career that afforded me my perceived "American Dream" where I owned my own home and could care for my mother.  Suddenly, I was classified as a loser, lazy and unable to contribute to a company's bottom line! 

A bit miffed with the Headhunter, I asked. "Do you read the news?  Did you know that President Obama met with executives of large corporations a few days ago and many of them signed a pledge not to discriminate against the long term unemployed?  Businesses promised to give everyone a fair shot with open job opportunities and stop tossing the resumes of unemployed folks." 

I got no reply. 

The call left my mind spinning.  I began to feel badly for all the people who weren't as fortunate as I am to have a husband who can support me.  What about others like me with no husband, who made the tough decision to be a caregiver for an aging parent?  Why are caregivers clumped into a group of people who are considered lazy just because we don't bring home a paycheck?  Obviously, our critics must not have had the pleasure of caring for an adult baby; a parent who requires assistance with all daily living needs. 

Why is caring for an aging parent considered noble, yet we are considered outcasts when our caring job has ended? 

Not willing to allow a stranger to define who I am, I have chosen to remain focused, write and publish how I did it, how I helped my mother to have a peaceful end of life even with a diagnosis of Lewy Bodies Dementia.  Our story is worth telling, so… when someone asks me what I do, my reply?  "I write."

Nothing Lasts Forever

"A Walk On The Beach"
By Sue Higgins
Acrylic on canvas

Family dynamics played a huge role in the anxiety I experienced as my mom's Caregiver.   I found myself angry with my siblings for their lack of help with caring for our mom.  Little help came, their reaction to my cries, "Just put her in a home and get on with your life... no mother would want their child to care for them like you care for Ma ... you don't know, you will never know because you never had children; you are not a mother!" 

 Words that cut me down to my core in a way that only siblings could do.  I was being discredited.  Their dissatisfaction with how I was helping mom, was like rocket fuel for my will; I didn't quit.  Ma was feeling better.  She was having lots of good days too!  I chose to get bigger than the problem and found the strength to keep up the good fight.

I was onto something big with the results I was seeing with Ma and no one seemed to care or want to hear me.  Just like when I was 5, I was being ignored.  My siblings often looked down on me throughout my life; I was considered weak because I cried easily.  My entire life up until now was spent trying to prove myself to my older siblings.  For reasons I still can't explain, I had felt I needed the approval of my sisters and brother.  It was quite a Eureka moment for me when I realized we are now all adults and just because someone is older doesn't make them wiser than me.

Caring for my demented mother was difficult but I refused to give up on Mom, I couldn't, she was depending on me.  Kneeling next to my father's casket in 1979, I made a promise to Ma, vowing to care for her when she was an old lady.   Mom was 50 and I was a wild 19 year old. 

After dad died, I lived my life and when the time came that I could afford to buy a house, I did and moved Ma in with me.  In the beginning it was great, my brother Ed was still alive and my family seemed tight.  Holiday's still meant something to my family, until Ed died suddenly in 2001.  Ed's death rocked my families world.  Little did I know how important he was to my family and how much he would be missed by me and my mom.

The stress I experienced caring for Ma was compounded by my expectations of my siblings.  I expected support.  I expected them to help me, after all, Mom was their mother too.  I believed my dad's words, I took them literally, "your family will always be your true friends, stick together."  I often wondered why my sisters and brother abandoned me when I needed them the most.  Thank God for the Hospice counselor I spoke to, he later helped answer this question.

Caring for my mom would have been easier if I knew then what I know now.   The one thing I would have done differently?  Visited a psychologist to listen to me and offer advice on how to cope with the perceived loss of my family and impending death of my mother.

I didn't get help.  I didn't even know where to begin to get the help I needed.  I didn't use support groups, how on Earth was I going to go to one when I was caregiving 24 x 7, 365 day a year without a break?  I was stuck on a hamster wheel, running 100 mph, exhausted and never getting anywhere. 

Siblings, not willing to step into mom's demented world, left me alone.  I felt as though they were trying to "break me" so that I would "just give it up" and put Mom in a home.   The work I was doing with Ma became too important.  It had become my new life work, food as medicine.  Ma, she became a partner, excited to try new foods that I would prepare for better health.  She wanted me to write about the alternative methods we were using instead of drugs.  She saw how food and fenugreek cured her diabetes; she was excited.  Ma wanted to help others so they didn't have to suffer like she had before we discovered the healing power of whole foods.  On her good days, mom loved to cook with me. 

I never did allow my spirit to be broken, my research with my mother was too important.  Not just for my own health but my family too; we share the same genetics.  My husband helped me cope.  He was my voice of reason, telling me to "get bigger than the problem."  With Brian's words of support and encouragement, I was able to tuck my emotions away and focus on the goal, giving my mom more good days than not so good days.  I made this my job and I did it very well.  Mom died peacefully and she had Lewy Bodies Dementia!

The perceived loss of my family was difficult, harder than losing my mother.  I had years to prepare for my mother's demise, I had no warning about my family belief system imploding.  It crashed and it crashed hard.  When I realized my dad's words were his ideal, his wish for his family; to have us all stick together and help each other through the tough times, I was able to forgive everyone for abandoning me.  It was a revelation for me when I realized what I was asking my siblings to do was beyond their abilities, their family role came with limitations. 

Unfortunately, I took Dad's ideal family to be a fact and real.  I embarked on the journey with my mom with the belief that I had a caring family who would stand by my mom and me, hey, it was what Dad wanted! 

I found myself devastated.  Lack of family support made it hard to cope with the day to day duties as Ma's caregiver.  But, I got through it; like my dad used to tell me when I was a little girl and upset about something, "Susie, wait a minute.  things will change, nothing lasts forever."  These words of wisdom from my dad helped me to stay the course.

Hospice helped me put reality back into my expectations of my siblings.  The bereavement councilor told me that in families, everyone has a role that makes a family what it is.  During the time when a parent is sick and or dying, adult children will begin to revert back to how they behaved with one another when they were children.  Family members who pass prematurely, leave a gap which shakes the foundation of ones family.  Everyone in a family is important because together we make our immediate families whole.

Now, there's nothing I can do to bring back the folks in my family that have died in order to resurrect the family I was born into, but what I can do is take on a new role in the new family that is emerging in the wake of the death of the old family.

Today, I am Auntie Sue to the babies that have been born into my family.  I play with the kids and teach them all the things I taught their parents when they were their ages.  My heart is full again with love for my family.  I accept all of them for who they are, limitations and all.  I know that I can't fix their problems and they can't fix mine.  All I can do is love my siblings and be grateful to have made it through caregiving for my mom alive.  I can't imagine life without my family, especially my husband and the kids.

A Valentine To Remember

Oil Portrait of Mom
by Sue Higgins
November 2013
I used her favorite picture as a guide

It's hard to believe that a year has gone by since my mother passed.  Valentine's Day 2013, a day I will always remember, the day I got the call I had been waiting so long to receive.  The call that would end my job as Mom's Caregiver.

 "Sue, your mom is not with us any longer."  Martine her nurse had said to me at 12:30 AM.  Words that still echo in my mind today, the year anniversary of mom's passing from Lewy Bodies Dementia.

My job was over.   No longer did I have to think about my mom.  Was she sleeping ok?  Did she have enough bananas or gluten free bread?  "What will I make Ma for a sandwich today?"  A question I would never have to ask again.  My work was done.

Now what do I do?



Amelia hugging Sam at the beach

This past year I haven't posted much on my blog, I spent time doing things that I could only dream of when caring for my mom.  I sewed curtains, made quilts, started knitting my first sweater.  Best of all, I got to know the babies in my family.  I went to the beach for the first time in over a decade.  I swam in the icy Atlantic Ocean up in Maine on a hot summer day with the kids.  I felt alive and renewed.

I made attempts to write my story of how I cared for my mom, but had lots of false starts.  I thought I would publish my blog into a book form.  Editing my blog was like picking a scab and bleeding profusely all over again.  My blog resurrected the painful experiences of caring for my mom.  I forced myself to read my words, I needed to rise above the pain and grow.  I did it.  I read it. I grew.

I saw a Psychologist to help me make sense out of all the questions that still lingered in my mind once my mom died and I found myself lost without work.  It only took a few sessions.  I was done when I didn't have anything else to say to the shrink.  I had my answers... I found my peace.

I began to write again.  I have been writing everyday, the story of how I did it, how I cared for my mom with Lewy Bodies Dementia. My book is fresh writing, not just my blog repurposed.  I need to tell people how I did it ALL.  Talking with doctors and nurses, using food as medicine and Naturopathic Medicine before allotropic medicines.  How I helped give my mom more good days, right up to her last day. 

So, life does go on after the people we love pass, but one thing that I have learned this last year is my mom never really died.  She still lives in my heart and mind. 

This morning, I woke up feeling my mom's presence.  I thought she was still living and I needed to jump up and make her coffee.  The dream I had of her was so real it woke me up.  I was disappointed when I realized it was a dream and mom wasn't waiting to have coffee with me.

Mom came to me in my dream, dressed in her favorite blue dress, the dress she wore in the portrait that I had painted of her just a few months ago.  She was not old, she was not young, but she looked alive.  She was radiant and her smile filled my heart with so much love.  I was speechless, not able to ask her where she's been or if she's happy.  My water filled eyes began to blur my vision of her.

My mom spoke to me.  "Susie, I am so happy now.  I am with Daddy and Eddie.  My brother Auggie and Al, my sister Flo and my parents.  I want to thank you for helping me as much as you did.   I love you so much.  Thank you for your kind heart.  I will always be here watching over you and all my family.  I love you.  Everything will be OK."

Mom hugged me.  It was reminisce of our last hug, the last time I saw her alive before I tucked her into bed for a short nap on February 8, 2013.  What a gift mom gave me that day, she looked at me with eyes that were so pleased, finally I felt her approval.  I didn't want her to go, but it was time.  I asked her to come to me once she was gone and let me know she was OK...

Last night, she came to me. 

Happy Valentines Day Ma!  You were a gift of love to this world.  I miss you every day.  Stay with God.