Disclaimer

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.

31 August 2010

Acupuncture .. 6 Treatments and Word Finding Is Improving

Ma dancing and looking out the window for her friends
Yesterday, my mom had her 6th acupuncture treatment in a row, just as the study had suggested for treating dementia.  The article that I had read stated that it works very well for Vascular Dementia sufferers.

Vascular Dementia and Lewy Bodies Dementia have similar symptoms; sometimes a patient has both VD and LBD.  From what I've read, both illnesses cause the patient to have detailed hallucinations; my mom, she sure has made up some pretty amazing stories from what she had "seen."

Two weeks ago my mom saw Dr. Barton's colleague for the first time.  My mom was a bit lethargic on the drive to her office, slumping to the left, drooling and not talking because her word finding was not very good.

Marcie interviewed my mom, asked her some questions and observed how she answered, if she could answer.  Two weeks ago, she had lots of trouble with her words, however yesterday she was stringing more words together and creating sentences.   The Acupuncturist also noticed that my mom's face appeared different, she was more relaxed where the frown she had become accustomed to sporting was gone.  My mom was more engaging and followed along with the conversation.  It's an improvement, even if it's a small one.

The study states that they performed acupuncture twice a week for 3 months.  My mom, she's only 6 treatments in to the plan; we have a way to go, but the results are encouraging.  Improvement from acupuncture could mean that she can change the TV herself, handle long drives up to Maine to visit family or talk on the phone with her kids.

One thing that I am noticing is that my mom feels really good.  She believes that she is capable of doing so much more than she has been able to demonstrate.

How does it work?

Acupuncture, as it was described to me, typically begins with a lot of treatments in the beginning.  It's a way for the body to realize what tasks the body can actually perform.  Once the patient has gone through the initial treatments, there should be improvement.  The body will also begin to take control back and the patient will only require maintenance sessions.  I don't know the time frame for the maintenance sessions, we are walking down uncharted territory.

I can say with confidence that my mom is improving with her Acupuncture ... 6 Treatments and word finding is improving.

She's also dancing, this is a new behavior.  I play music instead of putting on the TV.  She began to think TV was reality and boy, did we have some nightmares to resolve.

Music, with upbeat words and sounds seems to contribute to happy moods for her.  Her new favorite musician is Jack Johnson.  When she hears his music play, she gets up and starts to dance.  I love this new behavior!

30 August 2010

A Family Visit

Brian giving Jay a hug
Sunday was a great day; Brian and I had a date!

Ma went to Marty's so that she could visit with him, Patricia and our Aunt Jay.  Jay now lives with my brother and sister-in-law, Patricia.  My mom LOVES Patricia and she's always thought the world of my little brother.

There was dancing going on during my mom's visit, all triggered by a Polish Polka show.  Jay loves to Polka so she had Patricia dance with her.  The video is awesome... too bad it is locked in the vault.

Jay was happy having my mom visit with her; she missed my mom a lot.  Jay and my mom had been best friends since the day that they had become Sister-in-laws.  Jay has always loved my mom.  I arrived to pick up my mom a little earlier than I had planned; it was a  warm day.  My brother doesn't use Air Conditioning and even a little overheating can send us down a path of confusion with my mom.

Fortunately, she had a lot of fun visiting family.  I heard about my mom jumping up to dance and then spinning around, falling face first into the sofa.  Everyone laughed as they told the story how my mom didn't miss a beat, she got right up and danced.

My mom danced what I think my Aunt referred to as the "Chelsea Hop" or some dance with HOP in it.  Jay couldn't believe how well my mom danced.  "She danced like a professional!"  Jay exclaimed in her little voice.  I do wish I had video of Jay and Ma dancing.

Ma was a little worn out looking when we walked through the door to the patio.  She even looked at Marty as though it was the first time she had seen him, although she sat next to him all day on the sofa.  Confusion was setting in.

The drive home, she sang songs all the way home, singing along to the radio.  We pulled in to the driveway and she exclaimed, "OH NO!  This isn't where we are supposed to be."   For reasons unknown, she doesn't recognize this house as where she lives, she thinks she lives in a house in Saugus or East Lynn; homes from her long distant past.

My mom had dinner and put her nightgown on with out any help and put herself in bed at 7:30, she was exhausted.  It was a long day for her; she had a great time with family.

Even Blue Potatoes Can Cause the Blues

Saturday was quite an intense day; my mom's mood fluctuated way more than I've ever seen it swing.  We went from laughing and dancing in the supermarket to death threats by afternoon.  I blame it all on the volatile concoction of the upset in her environment from last week, the sun and blue potatoes.

Quite some time ago I had written about plants of the Deadly Nightshade variety, this includes potatoes, eggplant and tomatoes.  I had read how they can bring on hallucinations.  I observed that my mom seemed to hallucinate a lot more whenever I had given her potatoes and eggplant.  We eliminated both from her diet and her hallucinations were not as frightening to her.

My mom enjoys eggplant and potatoes.

I created recipes using eggplant, modifying my mom's heavily breaded method of preparing this unusual vegetable with a grilling technique.  My mom has been thrilled to eat eggplant again, singing my praises for creating a food masterpiece that tickles her taste buds.  Eggplant, as long as I peel the skin, doesn't give her scary hallucinations.

I've attempted to give my mom potatoes a couple of times and each time, she would turn sour.  She would become frightened and I would become a stranger in her eyes.  Suspicion and paranoia fed her insecurity, leaving us wondering exactly what should we do, would we ever get through this?  Real thoughts that flooded my mind on Saturday during my mom's wild trip with her hallucinations.

I've observed that even blue potatoes can cause the blues, bringing on dementia episodes that morph my mom into a character out of a horror movie.

The reason that I think this happens with potatoes is that there's a lot of starch in potatoes.  It raises my mom's blood sugar too high.  Over the course of caring for my mom, I've noticed that when her blood sugar is elevated she'll hallucinate... a lot.

My mom, she can eat yams or sweet potatoes with out any trouble, but any form of potato, red, white or even blue potatoes can cause the blues.

Saturday night ended well.  After my mom came back from her escape attempt earlier in the day, she sat in her chair and took a nap for an hour.  She woke up happy and in a good place, her spirit was renewed.  Walking lowers her blood sugar, it was exactly what she needed to chase the blues away.

We had dinner and while I was cleaning up the kitchen, I put on Pandora radio so that music would fill the house.

The music attracted my mom, she came out of her room and sat in her favorite seat.  I noticed her begin to move, doing the exercises that she had learned at the Adult Day Health Program; the same dance that she did at the Supermarket earlier in the day.

I was able to capture a little video of her doing her dance in her seat.  She reminded me of a school girl who is trying out for the cheer leading squad ... practice, practice, practice.  My mom, her dancing in the seat, doing the dance that she learned at "school", made the perfect ending to an otherwise crazy day with Lewy.

video

28 August 2010

Like A Switch Was Flipped

Our morning wasn't too bad, my mom was up at 5am, fully dressed and panicking.  She was late, a tone that rang the day in a little earlier than I had wanted on a Saturday morning.

I had her listen to music.  She was happy.  I posted about it earlier.

My mom was sitting on the patio waiting for me.  I had to give her time with her friends.

She is agreeable if I give her a choice and the decision is her idea.  It's very tiring to remember this fact, if you do it wrong and peeve her off, you may as well pack your bags and go home.

I walked up to her and she had tears in her eyes.  She was staring at my Blessed Virgin Mary statue, the plastic white one that my Aunt Jay gave me years ago when I had bought my first house.  It's been painted a few times and needs a fresh coat of paint to bring her alive.  However, even without paint, the BVM was talking to my mom.

"Ma, are you OK?  Are you ready to go to the store with me?  I do need your help."  I asked her in a cheery tone of voice.

"Ohhhhh, it's Yoouuuuuuuuuuuuuuuuu."  She said in a sweet voice, gazing up at me as though she just saw a celestial being.

"The Blessed Mother, she told me that you are an angel, a real angel.  That you are dead, that you are not really alive.  You are so beautiful. "  My mom said to me.  Off we went to Whole Foods.

My mom believed that I was one of her hallucinations, she didn't believe that I was real or alive.  She smiled at me the entire drive.  It was great.  I expected the day to turn and become great.

video
The store had music playing, the aisle we were in, the music seemed louder than any other aisle; my mom, she began to move her body to the music.  It began slowly at the beginning of the aisle, raising her shoulder like they do at the ADH program.  She moved one to the beat, then the other.

She was bouncy in her step as she slowly pushed the cart... all to the music.  She was smiling.  She was having fun.

By the time we got to the end, my mother was in a full waving her arms and laughing her head off dance.  I pulled out my camera and was able to get a short 30 second (if that) video of her at the end of her routine.

It was so much fun, we laughed very hard, a deep laugh... it felt awesome to laugh until my belly hurt... then laugh a little more.

We went through the check out, we chatted with the cashier.  She knows us, she knows me as the Fenugreek and Diabetes Lady.  She knows that we used it to reverse my mom's diabetes.  She is Muslim... a sweet woman who loves seeing my mother.  My mom likes her too.

We got home and I made my mom a hot lunch.  A chicken breast with a little bit of mashed blue potatoes.  She enjoyed her lunch.  She was pleasant.

My mom insisted on going out on the deck.  I worry about the heat and even more about the sun.  I notice that any time she sits in the sun she becomes catatonic or worse,  nasty.   Today, she became nasty; scary nasty.  She was angry with me.  She believed that I was not Sue because the Blessed Virgin Mary told her that I was an angel, that I am dead.

I had my mom sit outside with me in the shade as I tended my garden.  She gave me the mean look, a look that told me she was trying to find a way to "escape" from me.  She wouldn't even take the homeopathic remedy that Dr. Barton prescribed for just this sort of crazy scene.  She thought I was trying to poison her, because the real Sue, in her mind is dead and now an angel.  How do I talk her off this ledge, she hates me?  She doesn't know that I am Sue!

I was panicked a little, I asked her what she wanted and she said, 'I want to talk to Brian."  I walked her to the gate and showed her where Brian was in the yard.  She walked over and tried to ask him who I am.  She told him that I am not Sue.  I handed him the homeopathic remedy, he knew what to do from there.

Brian went along with whatever hallucination she had going on.  She walked him into the garage, to ask someone if it was the right medicine or if I was trying to kill her.  She wanted to talk to Dr. Barton.  He is on vacation this week, there is no way we could reach him.

Brian didn't know what to do either.  This is the worst my mom has ever been, something turned her against me, she hated me, she thought I was an impostor.  I thought quick and wondered if I cried, if I got myself to sob (which wasn't hard), maybe she'd realize it is me.

"Stop!  She demanded.  You are wearing me down!"  My tears got my mom to walk over to me and take my hand.  She believed it was me, my tears were the proof she needed.

I had her sit outside under the shade of the trees.  The breeze was pleasant.  The homeopathic remedy didn't work, it was the wrong one.  The thing with homeopathy, if it's the wrong remedy it won't do anything.

I cleaned the pool filter and my mom watched me.  When I was finished, I sat on the bench next to her, under the tree.  That's when she started to freak me out with what she began to say.

"You are going to die.  They are going to kill you with a butcher knife."  She laughed a sinister laugh, a laugh that scared the crap out of me.  My mother just told me that she wants me dead.

She continued, "You will die before me.  You will be killed with a knife."

What do I do at this point but start yelling to my husband on the other side of the yard, "BRIAN!  I DON'T KNOW WHAT TO DO HERE?"  He didn't hear me.  I sat and prayed.  I began to talk to the Blessed Virgin Mary in my mind.  I closed my eyes as my mom told me horrible things that made my heart sick.

She walked away from me and sat on the patio.  I had a feeling she was going to make a run for it.  Brian suggested I change my cloths.  It's worked in the past where if I change my cloths, she thinks I'm the good Sue, what did I have to lose?

While I was trying to find big baggy cloths, cloths that I wore when I was heavier, my mom took off out the back gate.  I didn't put the latch on tight.  Brian hopped in the car and went out to entice her to come home with him.  She wouldn't.  He suggested to her, "Well, if you are tired you can always turn around and go back the way you came."  My mom told Brian that she was going for a walk

He returned without my mom.  By now I had big cloths on so we got in my truck, the two of us and went out to find my mom.

My mom saw me and immediately she recognized me as the Angel Sue.  She thanked us for the ride home and then walked to her room where she sat in the chair and fell fast asleep.

I do hope she wakes up in a good state of mind.  Today was a rough one; the roughest day we've ever had with her.  It was like a switch was flipped.  I wonder if the potato caused her blood sugar to elevate too high. I have noticed that when her blood sugar is high, her blood pressure goes up and then if we add in the sun (like we did today) she becomes schizophrenic-like.  The laughing was like the laugh you'd hear in a horror movie.

Today's conclusion:  I am hiding my knives.

Acupuncture ... 5 Treatments and Cognition Is Improving

My mom has what we believe is Lewy Bodies Dementia, she has all the symptoms but has been diagnosed with Alzheimer's.

Mom doesn't forget much, her trouble is word finding and hallucinations, vivid hallucinations that would make anyone eaves dropping believe that we had parties going on in our backyard every day, all day... or at times they would hear about elephants and wild horses, some appear in the trees.

Acupuncture is helping her significantly, she is able to communicate better and tell me what is on her mind.  She is finding her words which is keeping her from becoming agitated.  Her blood pressure is lower when she is able to find the right words to express herself.  The length of time that her cognition is improved after acupuncture is increasing.  A true blessing.

Yesterday, my mom was laying on the table in Dr. Barton's office.  He was putting the needles into the acupuncture points, starting at her feet and working his way up to her head.  He had just finished putting the needles in her wrists when she said to Dr. Barton, "Did you put the needles in my head yet?"

Dr. Barton was pleasantly surprised, he answered her, "Not yet, they're next."  He turned at the same time and mouthed the word, "WOW" with a big smile, this is the first time that he's seen improvement.  He had been a little bit of a skeptic, but I believe in acupuncture, I see the amazing results.  Results that Dr. Barton had not been witnessing because the initial treatments only lasted a few days and wore off by the time I brought my mom for her next appointment.  Dr. Barton wasn't a full believer in this study that claimed to improve cognition; he began to wonder if we could be wasting our money.

I asked him to hang in there with us and convinced him to follow the study; 2 treatments a week for 3 months.  The study results are impressive, averaging 43% cognition improvement in the small group of 38 people who participated in the study.

Acupuncture for dementia, it's working for my mother.  After 5 treatments, she is finding her words more easily.  Granted, she's telling me about her hallucinations, but at least she can tell me about her "visitors."  They entertain her.  Mom listens to music and dances with them on the patio; she is happy.  The music becomes part of her world and she believes everyone is privy to hearing the music that she hears.

This morning, she was a little confused with what day it is.  She woke up thinking that it is Friday and she needed to go and see Dr. Barton.  She woke up at 5am.  By the time I had heard her up and around, she was already fully dressed telling me that she was late and needed to get to her appointment with Dr. Barton.  Putting the morning news on TV helped me to convince her that it's Saturday, our food shopping day.

Mom is happy this morning.  She's listening to Pandora radio, Jason Mraz type music; she is singing out loud, out of tune and dancing in her seat while she is holding her worry beads.

In conclusion... Acupuncture, 5 Treatments and Cognition is Improving in my mom.  Acupuncture is providing my mom more good days which makes care giving so much easier.  I recommend finding a licensed acupuncturist to help a loved one with dementia, it's giving us a little more quality time with our mom.  I am grateful.

27 August 2010

How To Pull the Pieces Back Together and Create Peace

My mom has abandonment issues, she's had them since she was 6 when she lost her dad to pneumonia.  

At the age of 14, her mother was committed to a mental institution, her sister too... this happened after her brother was killed in action in World War II.  She was left, alone with her brother Al, both living with relatives, never feeling that they had a home or a family to love as their own.  

It's because of my mom's history, the tough knocks that she had in life, that I vowed to care for her after my dad died of pancreatic cancer in 1979, one week before her 50th birthday.  In a sense, my dad abandoned my mom when he died so young at the age of 49, no wonder she hallucinates about him constantly.  

She's always seeing dad, he appears everywhere, in Whole Foods, in trees, in parking lots and every day at 4:30, in our backyard when he drives the bus down from Heaven to pick up all the children who had been trapped in Purgatory.

Dementia seems to amplify all of her psychological issues, issues that have been suppressed through out her life.  My mom is insecure and easily frightened when things in her environment change quickly.  Any abrupt changes bring on behavior issues, roaming, sleep disturbances and more vivid hallucinations.

How to pull the pieces back together and create peace...

First, I do need to be calm myself, I know that my mom can feel my energy.  If I'm happy, she's happy, if I'm upset, she's upset.  Remaining calm, cool and collected when exhaustion has taken control is challenging.  

Practicing deep breathing helps me to help myself.  It relaxes me and helps me to restore peace in my own mind. When I am in a peaceful state of mind, it's easy for me to lead my mom into the same place.

I sing.  Even when I am not feeling in a singing mood, I sing anyway.  I find one of those earworm songs, a song that plays over and over in my head ... I sing and hum out loud.  My mom loves to hear me sing because she associates my singing with peace and happiness.  Yay!  

My mom, she listens to music.  I turn on Pandora radio, put in her favorite artist and music plays, music that she loves to sing along to.  Jason Mraz is her favorite.

I cook.  I create recipes, using ingredients that I have on hand, recipes that help my mom with all that ails her.  I use all natural ingredients, cooking everything from scratch, never using anything in a box or with preservatives.  

Over the course of the last 2 and a half years, by using food as medicine, we have been able to help reverse my mom's diabetes.  It was miraculous how quickly her blood sugar was balanced once she stopped consuming sugar free products with aspartame and processed foods.  I have observed that when she eats anything processed, she has dementia episodes that are scary to her and me.  Solution?  Avoid those foods that disrupt the peace.

I am committed to creating delicious and nutritious food for my mom and my family.  We are all healthier.

I exercise.  I get out and walk and move.  I breath the fresh air while closing my eyes, recalling memories of vacations that I had taken over the years.  The memories of Hawaii, Alaska, England... all of these memories can be relived with a thought.

Lastly, I pull weeds in my garden.  Yanking weeds is symbolic of pulling the weeds from my life.  Each weed is a trouble, once it's pulled, it's gone.  Peace is quickly restored in my life, giving me the strength to continue in my role as Care Giver.

24 August 2010

Acupuncture... 4 Treatments and Getting Better

Yesterday my mom had her 4th acupuncture treatment in a row, just as the study had suggested.

My mom, she is finding her word more easily and her mood is pleasant.  Her blood pressure is lower than it had been which tells me that she is calmer.

Mom, she's been sleeping through the night too.

Today she is going to Adult Day Healthcare.  She's not thrilled about going but she knows that she needs to go because Dr. Barton "ordered" it for her overall good health.

We're just at the beginning of her acupuncture treatments and they appear to be giving her good results.  She still hallucinates a lot, she's not frightened and now she can tell me about "her people."   My conclusion?  Acupuncture... 4 treatments and getting better.

23 August 2010

Oh No! My Worry Beads!!

"Oh No!!!!  My Worry Beads!"  My mom rushed into the kitchen, worried about her Worry Beads.

The beads were a gift from my SIL; she had given them to her last Friday when we visited her at work.

My mom has not let those beads out of her hands...  until today when Dr. Barton had her remove them so that he could do Acupuncture on her.

She has her own handling technique for the beads.  She wraps the beads around her wrist twice and then slips her fingers through.

She sleeps with them.

She sits with them during the day rubbing her fingers over the silver jackets covering a polished black stone.

My mom has been bothered by hallucinations; unwelcome visitors, entities that I've had to banish from my property.  Neighbors give me an odd look when they see me; I wonder if they hear me rushing outside screaming into the air, "Ok all you people.  Get the hell out of my yard!  I have called Dream Master... be warned."  Who cares who hears me, I do it for my mom because it calms her and helps her to stay in  happy place with happy hallucinations.

The Worry Beads play a role now too ... I told her that if she is outside and there's a visitor that she wants to go away, all she has to do is hold her Worry Beads and her power will be amplified through the beads, sending the visitor far away from her.

My mom will not leave those beads anywhere... however, she did lose them this afternoon as she announced, "Oh no!  My Worry Beads!"  

I stopped what I was doing and we went on a hunt.  I was in a panic, thinking that she dropped them outside somewhere.

My mom helped me to retrace her steps.   The beads have been found, now I can resume worrying about those worry beads!

22 August 2010

Acupuncture for Dementia ... It Appears To Be Working

Patricia and Ma after shopping at Trader Joe's.
She's more "normal" after acupuncture.
My mom has had 3 Acupuncture treatments in a row.  Exactly as the study suggested; my mom has a treatment twice a week on Monday and Friday.  Tomorrow will be the 4th session in a row, she hasn't had 4 in a row yet.

What I've noticed is if she has a treatment and then skips an acupuncture session, she will revert back to where she had been before we started her on Acupuncture.

I've also noticed that it took 7 and a half hours for the treatment to "kick in" and bringing with it the ability for my mom to find her words so that she can tell us what's on her mind.  Granted she tells me about her hallucinations, her friends, but at least she can express herself.  Being able to say what's on her mind, crazy or not, definitely helps her to remain calm.

The 3rd session in a row was this past Friday, 2 days ago.  My mom is pleasant and happy.  She's agreeable to going to Adult Day Healthcare, mostly because she seemed to understand why she needs to go.  I've explained to my mom that we are working with the state to keep her home and out of a nursing facility. Socializing has been her nemesis, she just doesn't like to do it but she needs it for her overall good health.

People make us happy, not money, not things... people.

My conclusion so far is that Acupuncture for dementia it appears to be working.  My mom is still hallucinating but she's not bothered by what she is seeing.  She hasn't needed any homeopathic remedies for hallucinations for 2 days.

She has been nice to me for 2 days.  Her aggression toward me has stopped.  She's hugging me.  She's complimenting me.  She even said to me about her hallucinations, "You know, they all love you.  My friends tell me that you are great.  They want you to come with them.  I want you to come with me too... but I know you can't."

My mom wants me to die with her.  Fortunately, she is beginning to realize that once we die there's no coming back to Earth.  She's not afraid to die.  She is patiently waiting for the bus and helping all the lost children in Purgatory reunite with their mothers in Heaven.

21 August 2010

Homeopathic Remedies for Lewy Bodies Dementia Hallucinations

One of the most annoying "features" of Lewy Bodies Dementia are the vivid hallucinations.  Care Givers around the globe have to be creative in order to help calm our loved one.  Some times when my mom is extremely agitated I will give her a little bit of a homeopathic remedy.

We use a few.

Insomnia or Sleep Disturbances

Bach's Rescue Remedy.  This is made from the essence of flowers.   It comes in a dropper bottle as well as a spray bottle.  I find the spray much easier to administer.  It works fast.  I use it for myself too so that I remain calm.   Remaining calm as a Care Giver is very important.



Hallucinations that are Frightening

Helleborus Niger 30 C.  You can buy little pellets that my mom likes to refer to as "the candy."  She takes them sublingual, under the tongue until they dissolve.  This works to clear up confusion and helped her scary hallucinations to stop.

"I WANT TO GO HOME"

When my mom Says, "I want to go home," it usually means that she's agitated or upset about something.  She isn't feeling safe and secure, something is upsetting her.

Hyoscyamus Niger 12 C.  This homeopathic remedy I give to my mom when she's agitated.  When she says, "I want to go home" and she's already home, it can be disturbing.

I give her an eye dropper full of a tincture in a little water; I make it by putting 5 pellets into a dropper bottle (1 oz bottle with an eye dropper cap) fill it with water and let it dissolve.  Refrigerate the bottle, it makes it taste less bad.

Once my mom takes an eye dropper full of the tincture in a little bit of water, we take her out for a ride and when we get back to the house, she realizes that she's home.  She is in a more pleasant state of mind where confusion is erased and peace is restored.

Her Spirit Baby

"The Baby!!!!!!!!!"  My mom screamed.

It was just about 11 PM, I was tucking myself in for a restful sleep when I heard the panicked foot thumping of my barefoot mom down the hall and into the sun room.

"Where is he?!  You have to find him.  Help him.... THE BABY!"  My mom was in a panic, she was literally freaking out; she was worried about her baby boy, the one she lost through a still birth over 50 years ago.

Mom was shaking, she believed that her baby needed help.

"Stop him from eating that yellow stuff... oooo oooo... STOP HIM!  Please, he's going to get hurt."  My mom began to plead with me.

"He'll be OK Ma.  Dennis is with dad.  You just had a bad dream.  Everything is OK, Dennis is safe.  He is fine."  I did my best to calm her, assuring her that her spirit baby was being looked after by dad and Ed.

"Oh... it's just not fair, why did God have to take him?  Why didn't God let him have a life?  It's just not fair."  My mom continued to rant.

"Well, if Dennis was born and lived, you never would have had me.  Who would be here to take care of you now if Dennis lived?  I would not have been born.  Dennis gave his life to me because he knew back before he was born that you would need me more.  Isn't he a good boy?  He is OK.  He's protected and he now helps me to help you.  It's OK."  I gave my attempt at reason, who knows if I was able to get through to her.

I gave her a drink of Hyoscamus, a homeopathic remedy that calms my mom when she's agitated and upset.  It seemed to do the trick.  She went back to sleep and woke up at 6 AM... she is still looking for Dennis, her spirit baby.

20 August 2010

I Don't Brake For Hallucinations


Hallucinations, vivid images that my mom sees and describes in great detail have become her new friends.  She seems to live mostly on the other side with all of her dead relatives, mostly my dad and my brother.  It appears that she has only one toe in the pool of reality, a world that is becoming more and more foreign to her.

Driving in the car, my mom will sit in the front seat and occasionally yell out, "STOP!  There he is!!"  

"Who?"  I ask.

"Eddie! Stop!"  She'll exclaim in return to my question.

"Sorry Ma, I don't brake for Hallucinations."  I answer in a matter of fact tone.  "Why don't you just wave to let him know that you see him?"  I offer a suggestion.

My mom, she now waves, waving at something that she sees, someone who makes her smile.  Sometimes she talks to the people she sees, asking how they are or laughing because they are doing something funny.

My mom waves, she's the Queen of her reality, where she's the center of attention.  She loves the attention from her dead friends.

Children.  She had been seeing lots of children however, now that she seems to have made peace within her soul over the loss of her baby over 51 years ago, even  Dennis hasn't been around for a couple of days.  

My mom is focusing on my dad again.  This morning she woke up in a happy mood, she immediately told me about my dad.  "Daddy, he he he, he slept with me last night."  Her blood pressure was a little elevated today.  I couldn't understand why, then my mom said, "Oh, I know why.  he he he he... Daddy, he slept with me.  He's still in my bed sleeping."

Oh man, way too much information with the little "he he he" laugh that was coming out of my mom this morning.  Even at 50 years old, the idea of my parents "doing it" is way too much for me to handle.  Especially when one of my parents has been dead for over 30 years.  

Today, I don't brake for hallucinations... 

19 August 2010

That's the Problem! All the Dead People Are Taking the Jobs...

My mom made it through her second week at an Adult Day Health Program.  She likes it and hates it.

Yesterday she hated it, she was disappointed that they didn't do "school work" and were "forced" to watch a movie.  My mom was mad because they wouldn't let her leave; she came home and screamed, "I'm not going again!"

On the ride to the Center, my mom thought she saw Ed, my dead brother.  She wanted Cheryl to stop and come back home because she believed that Ed was here, she needed to see him.

Cheryl wouldn't turn around, she told my mom that they were expecting them at school.  My mom, she was not happy and this was the start of a bad day for her.  She was annoyed and agitated.

She wouldn't eat her lunch that I had made, she came home and told me that it was terrible.  She even told me while Cheryl was still here, "I like her better than my mother (me) ... come here..." My mom reached out to Cheryl and gave her a hug.  Clearly my mom was attempting to hurt my feelings, she is mad that I make her go to ADH.

How'd I react to this?  I laughed.  I laughed and laughed.  My mom told me that she was moving, that she was getting her own place.  I told her that I'd help her find a place and I'd pack her bags.  I also assured her that moving somewhere else is exactly what I want.  Yay!

"Super, do they have nurses in the place where you want to live?  The place that your friend at the center told you about, does it have nurses on staff?  If so, I'll put in an application for you and we can begin to pack your bags."  I was excited talking to my mom, mostly because the thought of her leaving was like eating a spoon of fine chocolate.

"Well, I changed my mind.  I'm staying."  My mom answered back.  Mom she was mad, she was mad that she has no control over her life.  Whatever I say, she wants the opposite, just like a two year old vying for her independence.

"I know, I'll live with Cheryl."  My mom glanced back at me as though she had the answer.

"Well, that's not going to work out Ma.  Cheryl has a husband and a son that she needs to take care of."  I explained.

"Well, she can get rid of him and let me move in."  My mom answered back with a smile.

We laughed.

My mom, she thinks she's more capable, probably because her physical health is better than it's been in decades.  She sees my MIL go out in her car, driving, something that my mom wants to do badly.  Losing her ability to drive has been a bone of contention with her; driving was a symbol of freedom and control.

"Ma!  You have plenty of time to spend with all of your friends in spirit when you are dead.  Please, now is the time for you to live with all of us that are alive.  I choose to be here with the living.  Enjoying folks that are alive is why we come to Earth in a body."  I attempted to reason with her.  I am frustrated, mostly because I'm tired of talking about dead people.

"Tell me something."  My mom continued, not hearing a word that I had just said.  "What job does Eddie have?  I saw him driving in a truck and he waved to me."  My mom believes she saw Ed yesterday morning, she believed that he was going to work.

"Ma, think about it... if all the dead people had jobs, there would be NO jobs at all for those of us alive.  As it is there are few jobs out there these days for the living."  Again I attempted to reason with my mom, once more she didn't hear me.

"That's the problem!  All the dead people are taking the jobs."  Cheryl pipped up.  We laughed, my mom she didn't, she didn't like my answer, she didn't acknowledge Cheryl's remark... she wanted a story that would validate her hallucination.

17 August 2010

All For One Reason... The Power of Love

My mom hallucinates, vivid hallucinations with details, details that she remembers from one day to the next.  In her mind she has a completely different reality and world.  A world that is foreign to most and at times for me too.

It's as though we are in a new phase of her illness, Lewy Bodies Dementia.  More and more her symptoms are in line with the symptoms of a neurological disorder that is very common but often misdiagnosed.  Doctor's don't know much about the disease, the folks with it are usually classified as Alzheimer's sufferers.  I write about my observations with my mom who I believe has this dreaded mental illness.  I hope that one day someone, a researcher or a student finds my writing and can take it to a new level.

My mom's wish is to help others to learn from her illnesses and what we have done to provide her the best days we can before her end day.

I found that validating her hallucinations keeps her from becoming agitated.  She loves seeing my dead brother Ed and my dad.  Most recent, she loves having her baby with her, the one that was still born, a baby she carried full term and never got to cuddle.  Losing her boy made her sad.

When I was a little girl my parents often told me that I was their Sunshine.  They told me about my brother who didn't make it and never had a chance to live a happy life.  My parents told me that when I was born, I was a ray of sunshine in their lives.  It always made me feel happy, that I could make my parents happy.  Approval, it's all we really want from anyone.

My mom needs approval with her hallucinations.  I give it to her.  I go along with her hallucinations.  She will throw out a sentence or a question about what she's seeing and I take it from there, forming a story that she finds believable.  A story that has now taken on a life of its own.

I have learned, it's easier to care for my mom when I go along with what she is seeing.  She believes that I can see them too.  I have them "tell me things" so that she will do what I need her to do.

It is sad to see ones parent in a state of confusion, hallucinating or frightened.  But, it is possible to guide them to a happy place in their reality.  Join their world... be creative.  I do..  Every day I feel like I'm on stage, performing the performance of my life; all for one reason... the power of love.

16 August 2010

My Little Boy

"Susie, can he live with us?!"  My mom rushed in from outside on Saturday morning, excited.

"Who?"  I asked

"The little boy, my son!  I found my son!"  She continued, happily.

A short time before my mom "found her son", I had wanted to take her out shopping.  A little trip to a store on a weekend day always helps us to have a good afternoon.  She likes to go out every day, especially on the weekend.

My mom didn't want to go when I was ready to go, she had other plans.

"They're about ready to show me something she whispered, please, I can't go yet.  It's something big that they are about to reveal to me."  She explained to me.  It made no sense, but it did to her so I agreed and went inside to make some Zucchini Fritters (previous post.)

Mom was sitting on the patio.  I worry about her sitting in the sun, it always seems to bring on a Lewy episode where she forgets how to do the simplest things, like standing or getting into a car.  She wouldn't come in.  I knew we ran the risk of an episode but I also knew that if I pulled her away from her "friends" she would absolutely tail spin, making the day unpleasant for anyone near her.

"Sure, Ma.  He can live with us."  I replied.

"Well, I know he doesn't eat our food, he isn't much trouble."  She continued as though I hadn't already said yes to her request.

"No problem.  He can live with us.  What is his name?  Who is he?"  I asked again.

"He's my son.  My baby.  The one that died.  He was in Purgatory... HE FOUND ME!"  My mom was thrilled.  It as as though a guilt that she carried for 51 years had been lifted.  She was over joyed to have him near her, she missed him all those years.  He was born dead.

"What's his name?"  I asked again.

"I don't know."  She said to me.

"Well, don't you think we should give him the name that you and dad picked out for him?  What were you going to name him?"  I asked my mom.

"Martin."  She said.

"That's not going to work as a name for him, you gave that name to Marty, my brother that is alive.  It would be confusing to have two brothers named Martin."  I attempted to reason with her.

"You're right.  Hmmmm.  What is his name?  What do I want to name him?"  She began to drift off in her mind, searching for an appropriate name for the handsome 4 year old boy with blonde hair and big blue eyes that she believes is her long lost son.

"How about naming him Denisio after your dad since Marty was named after Dad's father?"  I offered a suggestion.

"No.  I don't think he'd like Denisio, it's too foreign.  How about Dennis?  His name is Dennis."  My mom smiled, she had her son and she was able to give him a name.

Dennis is real to my mom.  I learned that going along with her hallucinations is the best route.  She believes what she sees.  How do I know she isn't really seeing what she's seeing?  Validating her beliefs helps to keep her from becoming agitated.  Whatever I can do to keep her calm helps keep away the scary hallucinations.

I've told her that Dennis catches the bus that comes everyday at 4:30.  He rides Heaven's bus with my dad and my brother Ed; he helps the lost children in Purgatory find their way home to their families in Heaven.

My mom is happy.  She believes that her job is to save the children and reunite them with their moms in Heaven.  She feels that she has a purpose; we all need a sense of purpose.  Dennis is back, her little boy.  Last night she said to me, "I am so happy, my entire family is together.  I'm happy that Dennis found me, my little boy."

14 August 2010

Zucchini Fritters - Gluten Free (Dementia Free Too!)

Today I was aching for Zucchini Fritters but I knew that I needed to modify my old standby recipe that called for wheat flour.

Gluten of any form seems to cause my mom problems, it brings on more hallucinations and often these gluten created hallucinations frighten her.  Solution?  Avoid gluten.

In an effort to curb my craving but also stick to my gluten free diet, here's how I made tasty Zucchini Fritters that are gluten free.

2 small zucchini grated- fresh from a local farm or your garden are the most tasty
1 green onion - dice the white part of the onion and discard the dark green tops
1/4 cup Bob's Red Mill Gabanzo and Fava flour
3 medium eggs beaten with a little Himalayan sea salt
2 tablespoons diced red onion
1 small tomato cored, seeded and chopped
2 Tablespoons fresh parsley chopped fine
1/2 cup Pecorino Romano grated cheese (good quality cheese)
olive oil

Mix all ingredients except the olive oil together in a large bowl.  Sprinkle with Himalayan Sea Salt and fresh ground pepper.

Put about 3 tablespoons of olive oil in a large skillet.  Heat the oil until it shimmers on medium high heat.

Place a large spoon of Zucchini Fritter into the hot oil.  Spread it out to look like a pancake with the back of the spoon.  Cook until golden brown and flip so the reverse side of the fritter is also golden brown.

The first ones that I had made were golden brown, we ate them before I thought of photographing the finished recipe.  The pictured ones were a little charcoaled - I hear it's good for the teeth.

My mom was excited, she rushed in from outside, interrupting my lunch preparation.  She had to know if "Denise" could come to live with us.  We told her that Denise can live here.  She told me that he knows that he doesn't eat.  She is thrilled to have her baby back.  It's almost as though she was guilty for not being able to birth him over 51 years ago... instead she got me.

He's the still born baby that she had before I was conceived and was born.  She believes he was in Purgatory with all the other children, today they found each other.  Now, he's here and she is thrilled to have her baby boy to help her with all the children that come to her looking to catch the bus to heaven.

Observation: Acupuncture Helps Tame Lewy Bodies Dementia Symptoms

Yesterday my mom had another acupuncture treatment.  She needed it.  Dr. Barton was away this week; it was a solid week since her last session.

I noticed that the treatment didn't work as well as previous treatments, Dr. Barton didn't put the needle in my mom's upper lip because she didn't like it.

My mom had difficulty finding her words last week, it was frustrating for her.  She noticed the inability to find words after acupuncture and it upset her.  I asked her to allow the doctor to put the pin in her upper lip because I believe it is the spot that allows her to find her words.  She agreed.

On the drive to the doctor, my mom was lethargic.  Slumping in her seat, a drooling face of stone and with fingers busily acting out whatever was in her mind, sadness filled my heart.  I prayed to BVM and asked her to help my mom.  I prayed that the Acupuncture treatment put a smile on her face as it usually had in the past.

Dr. Barton's colleague treated my mom with Acupuncture.  My mom was her disagreeable self as she got on the table.  She behaved differently with a woman practitioner doing the treatment.  She complained more.  She rarely complains to Dr. Barton... I wonder if it's because he's a man?  I know that once she told me how disappointed she was that he's married.

The treatment seemed to work fast this time.  She was laughing and smiling when she got off the table.  She commented that she felt drunk as she laughed with a big smile on her face.

We visited Patricia and brought her one of my gourmet sandwiches to try.  My mom loves visiting Patricia, especially in her office, we drive by on the way home so it's a perfect little pit stop.

My mom was smiling and laughing during the visit with Patricia, her favorite Daughter-in-law.  It was awesome.  I was grateful that the acupuncture worked.

Today we started off with a good day.  My mom is agreeable and happy.  She is not staring off into nothingness, lost in her own mind as she had been yesterday morning.

Through my observation, acupuncture helps tame Lewy Bodies Dementia symptoms in my mom.  I highly recommend Care Givers look into acupuncture for their loved ones or even just for themselves.

My mom finds her words after acupuncture, she can tell me what she needs, she can tell me about her hallucinations.  Even if what she is saying is like listening to a fantasy fiction movie, it calms her to be able to express herself, making caring for her much more enjoyable.  I enjoy improvisational acting, my mom's hallucinations help me to create stories which seem to validate her, bringing her peace.

From my personal experience, acupuncture relaxes me and allows me to tolerate the daily grind of caring for someone who has lost their mind.

13 August 2010

Who Is Lewy Anyway?

Lewy Bodies Dementia is the most misdiagnosed form of dementia.   From my experience, doctors have no idea what it is and if they do have an idea, their eyes glaze over whenever I suggest that I believe that they've misdiagnosed my mom.

She doesn't have Alzheimer's as they've diagnosed, not as far as I'm concerned; following I will tell you why I believe my mom has Lewy Bodies in her brain.

I live with her and see the changes that occur.  One minute she can appear fine and the next minute she has her eyes closed while talking about wild hallucinations that she demands an explanation from me.   She has Parkinson symptoms.  She loses her balance and rarely can find words to express what's on her mind.

One minute she will be alert and laughing with no warning she becomes stupefied, sitting in her chair, mouth open and leaning to the left.  She can't walk without needing to hold on to something, she can't figure out how to open the door, she doesn't know who I am, she is trapped inside the world in her mind.

Drugs, all drugs cause her to have scary hallucinations, hallucinations that caused her to dial 911 one night at 2am.  To my horror I was woken by a police officer in my bedroom as he shined a flash light in my eyes, "Mame, this is the police."  Horrifying is the only word that I can use to describe the feeling that came over me.  I felt like my privacy was violated... well, it was!

Food.  Processed food, wheat and dairy products cause her troubles.  Food that raises her blood sugar fast, simple carbohydrates, are all very bad for her mental state of being.  White food is another friend of Lewy, bringing him out from hiding, creating disturbances that put him front and center.  It's scary for my mom.  It's frightening for people around her, especially folks that don't know what to expect.  Sometimes I have no idea what's going on or what to expect, but I'm learning about Lewy.

On Wednesday, after my mom came home from the Day Care Program that we've enrolled her in, my mom was lethargic.  Cheryl was a little concerned, she couldn't believe how fast my mom went from being alert to not having the ability to keep her eyes open.  Hallucinations are always more intense when my mom is tired, she was tired after the day program.

I've made observations for nearly 2 years.  Food matters when it comes to my mom's happiness.  Living food, live food like fresh vegetables in a salad, help us to have more good days.  Sleep is important too.  I know that she has trouble distinguishing between day and night when she has dairy before bed or any simple carbohydrates.  Ashwagandha helps her insomnia, it provides her restful sleep which contributes to good days.  Phosphyltidal Choline in her oatmeal every morning helps her a lot, giving her more good days...  it's similar to the Excelon patch, only with no side effects.

Who is Lewy?  It's a mean and nasty neurological disorder, a disorder that lots of people have but don't know it.   From my understanding, it comes on suddenly; poor nutrition, uncontrolled blood sugar, blood pressure and cholesterol creating the perfect scenario for a future with Lewy.  I also believe that the foods that we consume, foods that we believe are safe are the biggest culprits to lead us down Lewy Lane.

Lewy sucks, coming on strong, making life very difficult for all in the vicinity of the demented patient.  Care Giver stress is elevated when Lewy is around, mostly because we have no idea if it's going to pass or if it's the new "normal" for our patient.  Drugs don't work.  The only things that seem to work to calm my mom are Homeopathic Remedies that are prescribed by our Naturopath Doctor.

Hyoscyamus is the remedy that I give her when she is confused and wants to "go home."  A little drink of the homeopathic and within 15 minutes she is calm and realizes that she is already home.

Who is Lewy Anyway?  A visitor that makes the hair on the back of my neck stand on end.  However, Lewy provides opportunities for me to grow and learn, this disease named  Lewy destroys lives, he destroys families and does whatever he can to drive everyone mad.

It's a freakish ride that we are on, never knowing what each day will bring.  Lewy has taught me to take one minute at a time, reminding me that NOW is all that matters.

A new report is out New Report Highlights Delayed Diagnosis and Care Giver Burden in Lewy Bodies Dementias

October 10 - 16th is the Lewy Bodies Dementia Association Awareness Week.   It's up to us, the Care Givers to help our wards and the only way we can do it is to educate ourselves.  Pay attention to changes.  Speak up and question everything.

12 August 2010

Does Ma Have Her Sight On a New Beau?

Original Art by Susan Powell
Christmas Card
My mom still is apprehensive about going to the Adult Day Health Program.  She refers to it as jail.

"Tell me something, how long do I need to go to jail?"  My mom asked me last night before bed.

"It's not jail, it's school.  You'll go as long as it takes to help your brain."  I answered.

She didn't believe me.

She told me about a few things that happened during the day.  Well, she mostly tried to tell me but ended up laughing when she thought about the events of the day.  She does enjoy the place once she's there, it's the getting there that's the trouble.

I've noticed that her fears manifest into hallucinations that always attempt to ruin her good reputation.

This morning she told me about a big chain on the door at the center and how it keeps everyone in.  "They don't let us out!" My mom exclaimed.

"No, no, Ma.  That chain is a magic chain.  It protects everyone inside by keeping out the scary spirits who try to mess with all of you.  The other folks there, they have similar issues like you but they know that the chain on the door protects them from any bad spirits that try to annoy you.    That's why none of them are frightened.

"Why do you think everyone is laughing all the time and having fun?  Because they don't have to worry about anything coming inside.  You are protected behind that chained door... the chain has magic powers, it's protection."   From experience, wild stories with fantasy always make sense to her.  She loves things with magic powers so I play off things that she likes which seem to work to calm her.

She is calm today.  We will go to the farm stand and get fresh local vegetables, a trip she always enjoys.  Tuesday she'll go back to the center with Cheryl.  Soon, I can see her going there every day and enjoying it, she's making friends and may even like a "fella" there.  Before I left her room last night she said, "Oh, by the way, don't you dare stop me from having a boyfriend!  There's a fella at the place that is nice, he's very good looking. "

I offered her to invite him to lunch sometime and I'd serve them a nice lunch on the patio.  She smiled, she liked the idea, only she's a bit shy... she doesn't even know his name and when I mentioned Cheryl helping her get to know him, she was like a school girl, "Oh, no!  Don't you dare.. he he he."  So... who knows, does Ma have her sight on a new beau?

Stay tuned...

10 August 2010

I Was In Jail!

"I was in jail!  My angel here saved me." My mom exclaimed as she came in the door after her first day at Adult Day Healthcare.

"I kept telling them, I didn't do it!  They kept me in jail."  She bellowed on.

"So, what's on the plan tomorrow?"  She asked me.

"You are going back to the center tomorrow.  Cheryl is coming and will take you."  I answered her.

"No.  I'm not going to jail again."  She answered.

Cheryl told me that she ended up having fun but there was a story to tell, a story about jail.

My mom, she believed that she was in jail when she got to the center.  I didn't get a chance to hear the story completely from Cheryl because my mom was in ear shot, I'd rather not call attention to any upsetting moments.

Cheryl was creative.... she was my mom's Attorney and she got her out of jail.   Once my mom was freed, she enjoyed herself.  She played horse racing and won.  She came home with 2 prizes.  A little purse and a little coffee cup.

Tomorrow she will go back and have more fun.  The more she goes the more she will enjoy going and one day, maybe she won't mind going by herself.

Tomato and Basil Salad

It's been a great tomato season; the weather has been perfect for growing tomato plants, they grow like weeds.  I get tomatoes from the farm, a 25 pound box for 12 bucks.  I don't have any ripe tomatoes in my garden, but we do get to enjoy tomatoes every day.

Here's one of my latest recipes....

Tomato and Basil Salad


Large tomatoes cut into bite sized chunks
1/4 cup crumbled Goat Feta Cheese
2 tablespoons Pine Nuts
2 Tablespoons Fresh Basil (chopped)
2 Tablespoons Olive Oil
1 Tablespoon Balsamic Vinegar
Himalayan Sea Salt
Fresh Ground Black Pepper

Salt and pepper the tomato chunks, Toss.  Add the basil and goat feta cheese, toss again to mix evenly.  Drizzle the oil over the salad, follow with drizzling the balsamic vinegar.  Sprinkle pine nuts over the top of the salad.  Add more salt and pepper to suit your taste.

09 August 2010

Wild Hallucinations

The last 2 days with my mom have been filled with hallucinations.  Yesterday's hallucinations were scary for her. She sat and cried when she thought she saw my dead brother Ed getting beat up by the hallucinations that were part of a mafia mob.  I assured her that the hallucinations were just messing with her and attempting to get to me through her.

I explained to my mom how these bad spirits know that the only way that they can get my attention is by driving my mom mad.  These spirits are lost and it's the only way that they know how to be noticed.  They want to go to Heaven but have been stuck in Purgatory for so long they don't know how to be nice.

"Ed's OK Ma, these spirits don't mean to scare you, it's all they know how to do.  They are depending on us to help them get on the bus to Heaven.  Ignore the scariness, OK?'  I said to my mom in an attempt to put her mind at ease.  It seemed to work.

"Don't leave me.  Stay right by my side, OK?'  My mom asked.

These days I find myself walking into empty rooms bellowing commands, "Get OUT!  All of you people need to get the hell out of here!  You are supposed to wait out in the yard.  LEAVE JO ALONE!"

My mom always close behind me, watching and listening.  She seems to breath a sigh of relief as she says, "How do you do it?  How do you get them to leave?"

"Oh, you know who I am Ma, you know I have the power to banish the bad spirits.  They should not be here.  I will call Dream Master if they keep coming."  I find myself repeating this explanation, it seems to put her mind at ease, even if it's only for a short time.

Hallucinations keep her from using her bathroom, fortunately she tells me and I chase them away before she makes a mess in her pants.

These days, my mom is having wild hallucinations.  I wonder if she's worried about going to Adult Day Healthcare.  She's going tomorrow and Wednesday with Cheryl.  We hope that by having Cheryl go along with her that she will acclimate to the program and warm up to the staff.  She already thinks the Nurse Director looks like Sister Francis, a nun that she loved from First Grade.

Today we have a case worker coming from the state to see what help is available to us so that my mom can live at home.  I know that there will come a time when my mom needs a nursing facility, there are times now that I feel she needs to be in one.  Before we do commit her, I do want to exhaust all of our options to keep her home.  She sleeps through the night when her mind is at ease, when she is comfortable in a routine, she sleeps well.

Wild hallucinations come and go.  Sometimes food triggers them, sometimes a change in routine causes them to take center stage in our lives.  We get through them.  I make up stories; the more wild the story, the more she believes and her mind is put atease.

07 August 2010

Saving the Lost Souls of Purgatory

My mom hallucinates... a lot.  Some of the hallucinations scare her, others she enjoys seeing, like my dead brother or my dead father.

Many times I feel like I am standing in front of a runaway locomotive; never knowing what to expect from my mom's demented mind, I brace myself.

"Susie, what are all the people doing out there?"  My mom will ask.

"Look!  There's Eddie in the trees.  He is swinging like a monkey!" Mom shrills excitedly.

"Wow... look at all the nuns!"  Nuns that my mom sees all the time walking the perimeter of our fenced in yard.

Shadows become people in my mom's world; No rhyme, no reason.  To her these people are real and arguing makes the hallucinations scarier, making care giving more difficult.

So, I made up a story that seems to explain the hallucinations so that they are not as frightening.  All day long my mom sees shadows that she believes are people, her people.

I have explained to her that these are all the lost souls who are stuck in Purgatory.  I tell her that because she has a magic eye, she can see the souls who need help.  The souls recognize her and come from far and wide to our yard in order to catch the bus to heaven.

My dad is the bus driver for heaven's bus.  He comes every day at 4:30 pm to our back yard to pick up the souls who had gathered over night and all during the day.

The nuns, the shadows on the fence that are created by the sun shining through the leaves of the trees, they patrol the property after the bus leaves for Heaven.  They are here to gather up the children and keep them safe, my mom worries about children all the time.  I tell her that these children are in Purgatory because they died before they were baptized.  A belief that she had learned from nuns when she was a little girl.

I tell my mom that she is saving the children from Purgatory, that she's reuniting the children with their mom's in Heaven.  I explain to her that all the people she sees, she's saving.  I assure her that even the scary hallucinations are just those folks who have been stuck in Purgatory for a very long time and they forgot how to be pleasant.

My mom is happy knowing that she is saving souls.  The souls recognize her when we are out and they follow us home, they recognize my mom as their bus ticket to heaven.

My mom, she sits and watches her people all day long.  She waves to them and smiles.  She has conversations too, waving her arms and laughing.  Finally, 4:30 rolls around and she sits and waits for my dad to come down from Heaven in his bus.    I make her a cup of decaf coffee and give her a coconut ice cream to enjoy while she's waiting.  She sees him.  She sees the people get on the bus.

Sometimes she forgets and misses seeing the bus.  This is when she tells me that she heard the bus come... planes flying over the house at 4:30 make an engine noise... to her it's my dad's bus.

The power of suggestion works.  It helps me, the Care Giver, chase away her scary hallucinations.  I give her an explanation and she is happy.  She knows that I call Dream Master in emergencies; he takes care of the scary hallucinations and has the power to send the bad spirits to Hell.

My mom understands Purgatory, she was raised a Catholic... Purgatory was always a scary place to me.  No one wants to be in a holding pen for souls, never knowing when you will get to be reunited with God and your family.  Mom likes to help, she likes to make a difference, we all do.  I use my mom's hallucinations to help her feel that she's making a difference.  My mom, she's happy and understands her role; saving the lost souls of Purgatory.

06 August 2010

Happy Birthday to Me

"Susan!  Wake up crying go to bed laughing."  I heard the echo of my Baci from years gone by.  My Polish grandmother was great with her one liners, she spoke them in broken English, words I never forgot.  Another treasure she often said to me while I was crying, "Susan!  Cry more... pee less."

Yesterday, on my 50th birthday, I woke up crying.  I was having a pity party for myself because I expected so much more, after all I made it to 50, where was the band playing and ticker tape parade down my street?!

I was disappointed.  I cried.  I felt sorry for myself.

My mom, she felt bad yesterday when she saw me crying.  I didn't have to tell her why I was crying, she knew.  She knew that she was not part of my birthday plans and she felt bad.  "I'll go to the Senior Center."  She said to me in an attempt to get me to stop crying. 

"It's too late."  I said to her.  I needed to put you on the schedule yesterday; yesterday you refused to go and I didn't want to force you.  I cried.

My husband took the day off.  Ideally, I would have liked to spend the day with just my husband and time off from Care Giving.  Time off from cooking and serving every one... it didn't happen.  I cried.

I cried a lot.  My eyes hurt and itched all day from just 2 hours of crying.

Knowing that I had to make the best of my day, that I am the only one who can make myself happy, I lowered my expectations.  I expected nothing so whatever came during the day would be awesome.  I also knew that I needed to cheer up or my mom would be a handful, she reacts to my emotions and I was tetering on the verge of sabotaging my own birthday happiness.

I began to think, "who better to spend my 50th birthday with but my mother, she was there when I took my first breath."  I changed my focus from myself to my mother.

Changing my focus, shifted the energy around me.  It changed from sadness to gratitude.  I am grateful for my mother, I'm grateful that she's alive.  I said to her, "Ma, you gave me life, who better to spend my day with?"  My mom said, "Well, you saved my life too, I wouldn't be here if it wasn't for you."  We hugged and shed a happy tear.

"Ma, let's go to the fish market, I want to get myself lobster."  I said to my mom.  "Maybe we can stop at TJ Maxx so that you can get me a little memento gift, a gift that I'll remember you long after you are dead so that I always feel you with me." 

My mom scurried off to get ready for our little shopping adventure.  I checked email one last time before heading out and I got an email note from my Sister-in-law.  My brother and her bought me a weekend away at a fine resort in Vermont.  They will take Ma for the weekend so that Brian and I can have a little time away, something that rarely happens these days.  I sobbed. 

My mom seemed a little happier, but still she had a big sad frown on her face.  She felt bad that she was causing me to have a bad birthday and it was going to take a lot of effort on my part to turn her frown upside down.

We headed toward the fish market in Revere and stopped at TJ Maxx.  We looked at bathing suits.  I got one.  I got a new summer dress too.  We checked out the jewelry counter and my mom spotted a necklace that she wanted me to have, a tourquise necklace with big rocks, 3 strands of tourquise... blue... my mom's favorite color.

I tried on the necklace, it felt like a noose. 

My mom, she loved how it looked and wanted me to have it.  I felt a noose was appropriate as a gift.  The necklace will remind me how oppressive Care Giving for a parent can be, but it will also be a reminder that love, no matter how heavy a burden, the power of love gets us through the tough parts of life.  I love my tourquoise noose.

I found the peridot ring that I've been visualizing.  It was in the clearance case, the ring that I had been seeing in my dreams.  It's a little too small, I'll have it sized... but it's perfect.  Exactly what I had wanted for my birthday so I bought it using my husband's credit card.   Happy Birthday to me!!!

It was noon.  Too late to drive to Revere and back, so I stopped in Market Basket to see if they had lobster.  They did, it was only $4.95 a pound so I got 6 lobsters.  I planned on eating every one of them on my birthday... I have been craving lobster since we had gone to Maine a few weeks ago.  I didn't get my fill and now was my chance. 

Summer is lobster eating season in New England.

I'm the only one who likes lobster so I bought Brian king crab legs and a cooked chicken for the mom's.  I got home and served our mom's their lunch, chicken and left over cacciatore from the night before.

Brian had gone out and came home minutes after I got home.  He walked through the door with a beautiful bouquet of cut flowers.  A stunning display of colors, hand delivered by the love of my life.  He went to the store and bought fine wine too, wine to go with my lobster. 

My mom was happy.  I was able to convince her that having her home with me on my 50th birthday was what I wanted, that having her around was perfect.  We went into the pool... she exercised, we laughed, she shivered but stayed in the pool because she knew it was making me happy to see her having fun. 

I made my lobster, all 6 of them.  Brian served me on the patio, lobster and fine wine was divine.  I didn't think I'd eat all of those steamed lobsters, but I did and I sang, "Happy Birthday to me" with every bite.




05 August 2010

Today I am 50

It's my 50th birthday.  I expected it to be a grand day, a day where I didn't have to take care of my crazy mother.

It didn't happen.  I should have planned for it instead of expecting others to step in and sue-prise me.  I suppose I expected a miracle.  I made an assumption.

On my birthday today I learned something, if I want something I need to speak up.  I can't expect to be surprised.  I have to do things for myself where my demented mother is concerned, only another Care Giver would know what to do for a fellow Care Giver on her birthday.

The best present anyone could have given me today would have been to take my mom for the day.  It seemed like an obvious gift that could have been given to me, today of all days... but, no such luck.   It's all I really wanted for my birthday.  I wanted a day away to spend it with my husband.  I rarely get to spend time with him.

It didn't happen.  Even birthday's don't magically give Care Giver's a day off, a special day off.  Today is the first day in my life that I've had to work.  I have never worked on my birthday.  Care Giving is a different job, I can't call in well, I can't even call in sick!

So... I'll make the best of today.  I will go and buy myself some lobster, cook it up and eat it until I can't eat another bite.  My mom will be with me all day.  I hope she has a good day.  I am praying for a good day.

I do hope my mom has a better day than the last couple of days.  Yesterday she got mad at our Visiting Angel; my mom wanted to go home... she was already home.  My mom got angry with Cheryl, the way she gets with me when I don't let her do what she wants to do... things that are dangerous, like roaming the streets looking for a home from her past 81 years of life.  A home that she'll never find.

Today is my 50th birthday.  Whoopee.  Big deal... no one really cares... except of course me.  My mom didn't remember... I was totally demented in my thinking, my expectations became my reality.  My unrealistic expectations gave me a gift of disappointment.  Nothing special on the day.. I am all about the day.

I was woken to a squeaky floor and my mom fully dressed; it always starts my day off poorly when I see her ready to head out the door before I've opened my eyes.  Our day is off to a rocky start, it could go either way.

I need to find happiness inside of myself, it's the only thing that I can do to salvage the day.  I suppose 50 years ago my mom was not having a good day when she went into labor, allowing for my debut on Earth as Susan Helen Jarmulowicz.

All I can say is payback is a bitch... today I am 50.