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 May 2010

I Found Peace... I Put Myself First

Mom's shopping trip appeared to be a good idea until she stopped in at her old supermarket and bought Activia Yogurts for herself.  She ate one while she waited for me to come and get her, she told me that she was hungry.  She forgot that she can't eat those yogurts, the dairy in it causes her a problem.

It was like Mrs. Jekyl and Mrs. Hyde, my mom's attitude and behaviors turned from pleasant to nasty without notice.

I arrived 15 minutes early to pick her up, I had a feeling that it was time to get her.  She was waiting outside the small department store, holding a bag.  She didn't smile when she saw me, I knew immediately that something was wrong.

She handed me her bag as she climbed into the truck.  A bag that held Activia yogurt containers, yogurt that in the past has caused her personality to change within minutes.  Yesterday was no different, her personality changed, she was in a nasty mood and wouldn't eat lunch.

Grilled vegetables and a small piece of steak was on the menu for lunch yesterday; my mom's favorite meal that we don't have very often.   I had left my mom in her room, she was tired and wanted a rest.  She woke up and came through the slider out to the deck where I was cooking, "That bitch, I am going to fix her wagon!"  My mom exclaimed to me.  She was mad.  MAD AT ME!

I decided to approach things differently.  My mom is not right mentally and I need to remind myself that no one can make me happy or sad, it's up to me.  It's my choice to give away my power and allow my mom to control my emotions.  Yesterday, I decided not to care.  I decided to put myself first and enjoy a beautiful summer day.

My mom sat on the patio, looking up at me with an evil eye, trying to give me that old Italian curse.  I laughed.  I cracked up laughing every time I glanced down at her.  It made her more angry.  She moved to another seat on the patio and glared at me.  I laughed.  I laughed like my father who often laughed at bullshit.  It was his way of making the shit slinger realize the lunacy in their behavior.  Being on the receiving end of this sort of laughter sucks but it does work.

"Oh, you laugh now."  My mom said to me as she glared at me.  "You laugh now, keep laughing... you are going to be crying soon."  She added with daggers shooting from her eyes.

I laughed.

"Ma, would you like to eat down there or would you like to have lunch inside?"  I said to her, ignoring that she was angry.

"I'm not eating your poison!" She hollered up to me.

I laughed.

My mom was angry.  I decided not to let her make me cry.  If she wanted to be miserable, she could be miserable alone.  I knew that the ingredients in the yogurt would run its course through her body.  I also knew that eventually she'd want to eat and I'd make sure to give her lots of vegetables with some coconut ice cream for desert.  The coconut milk ice cream, coconut flavored, always puts her in a better state of mind.

Mom sat and cried.  I didn't pay any attention to her tears.  I let her cry.  After a couple of hours, she was ready to have her lunch.

Music sooths the soul.  I played her favorite music with the hope of calming her.  Once she ate the coconut milk ice cream, her mood shifted.  She was happier.  The food, ice cream and music did the trick.

I worked in my garden all day, preparing the soil for all the seeds that I'll plant today.  It was awesome.  I had a great day because I put myself first and my husband second.

Honoring myself, I put myself before my mother.  I decided that it's insane to allow my own personal happiness to be compromised in an attempt to bring happiness to my mom.  Simple fact, we can't make anyone happy.  I can't make my mom happy; only she can create her happiness, it's a state of mind.

Laughing changed the energy and the dynamics of the day.  No yelling, no crying, no upset throughout the entire house.

We had a great day yesterday.  I'll drop my mom off at the store again if she wants to go.  If she eats something that she shouldn't eat, screw it.  I've learned how to ride my mom's waves of insanity; I've found peace.... I put myself first.

30 May 2010

Shopping Alone

My mom loves shopping.  She loved browsing in stores when she was able to drive herself to stores.  It's the reason she misses driving as much as she does, no way to get to where she wants to go when she wants to go.

This morning she woke up in a good state of mind.  Her blood pressure was a bit high first thing this morning but after she had all of her supplements and breakfast, she was in a good blood pressure range.  She felt good.  She was finding her words and she made sure that I knew that she wanted to go shopping.

I have been informing her right along that any day that is a pool day, we will be spending it here at home.  She gets that, she knows how much I love the pool and my garden.  A garden that is getting my attention today, nothing is getting between the Earth and me.  Not even my mother.

My mom was all mopey, she wanted to go out.  She said to me as I worked in the garden.... "I am going to call a cab.  I have to go shopping.  I want to go shopping.  I need to find someone who will take me... not you of course, but someone."

My reply, "Good luck with that."

It suddenly struck me, why not offer to drop her off at the little strip mall about 2 miles away?  When she first stopped driving, she would have me drop her off there all the time.  She enjoyed browsing and the feeling of freedom.  A feeling that she still had control of her life.

"Ma, how about I drop you off over at Burlington Coat Factory?  You can shop around and I'll come back for you when you tell me you want me back?"  I said to her with an enthusiastic voice.

"You'd do that for me?  Oh boy, I'd appreciate it."  She replied as clear as I've seen her in over a year or more.

"Get your purse and glasses.  Meet me downstairs."  I said to her.

Within minutes my mom was at the front door, waiting and excited to be going shopping by herself.

It felt right to let her go.  If she wanted to go she must be feeling like she can handle herself alone.  I've seen her refuse me dropping her off over there for quite sometime now.

There's a dollar store over there too and her favorite supermarket that she always shopped at because everything is cheap.  She knows what she can and can't eat, I think she wants more oranges.  It will be fun for her to go in that store alone too.

I am confident that she'll be OK.  I put a note in her pocket listing her name and address with our phone number in case she gets confused all of a sudden.  I'll go back in an hour to check on her.  My gut is not wrenched or worried, I know she'll be fine.

Won't it be awesome if this is a steady routine?  Maybe she can handle going to the Senior Center in town alone too?  She used to go but then things changed and she couldn't handle being away from me.

29 May 2010

Dementia and Losing Control

What I am learning about my mom and my crying is that it's all about control.  My mom can still control when I cry.  She has mastered this fine skill over the last 49 years.  My mom could always bring me to tears and now that she's demented, she does it with zest.

Why?  Because it's one of the few things in life that my mom can still control.

She can't operate the TV Remote by herself, she can't see the numbers or forgets what to do with it or how to hold the remote.  She can't cook any more, not alone.  All tasks that she once could do easily are now a challenge.  She is not able to learn new things.  At least she's finding her words more these days... could it be the coconut oil?

However, yesterday while preparing dinner, I realized that there's one thing she figured out that she could still control... ME and my tears!  Yesterday, she appeared gleeful when I busted out crying.  To see me crying all day made her have a Mona Lisa smile, one of pure satisfaction.  Talk about narcissistic behavior, this was classic.

I read today that folks with dementia will often feel agitated and get aggressive when they realize that they can't hide their inabilities and eventually lose control of everything in their lives, everything that made their identity.

Losing the ability to drive was and still is the sore spot for my mom.  Driving was her identity, it's all that she did and she loved it.  When she became demented all of a sudden one day, she would drive around for hours looking for our house.  Driving by the house several times before realizing that she found her way home;  a navigation system was useless.  It was a sad day for her when she gave up driving.

I did fight with her over driving.  I had to, she was a hazard on the road for herself and others.  My mom lost control of her one prized possession, her car.  I am blamed every chance that she remembers why she is angry with me.  It's always my fault these days.

My mom does send me on guilt trips, although those are fewer and fewer.  I'm tired of the abuse.  I'm tired of all the tears.  I'm taking back my power NOW.  My mom can only make me cry if I allow her to make me cry.

One day this will all be over.  My mom will have control again as her soul soars with the Angels and my well of tears is finally dry.

28 May 2010

Update: Got My Miracle

I got my miracle today, her name is Donna.  I love my sister, she is taking my mom out tomorrow at 9am!

Wooo Hoooo!

Respite is on the way regularly too.  I'm excited.


Thank you Donna.

Of All the Things I Miss...

Today I finally had the chance to call the Alzheimer's Association.  I had been waiting to make the call, waiting for an opportunity when my mom wasn't in ear shot.

Lately, she's always near and can always hear what I say.  I am in such desperate need for respite that I threw caution to the wind and started making calls in order to find the help that I need... Ma, she was in the room.

Big Mistake!

My mom heard me talking to one of the folks that I had called.  She thought I was calling a nursing home to have her committed.  Of course I wasn't... I feel like committing her to a home, especially after mornings like the one that we had this morning.  All that I want and desperately need is regular respite for myself so that mom can continue to live here with us.

"My family will take me in."  My mom said to me this morning after she heard me talking to Comfort Keepers, an organization that helps Care Givers with respite from caring.

"My family... it does not mean you, you are not my family!"  She screamed at me.  "My family will come.  I'll call Donna.  I want to talk to Donna."  My mom insisted.

Donna hasn't called or come by in 4 weeks.  My last sibling who was offering a little time for me to have a break, stopped coming.  My mom was hallucinating a lot and it freaked her out.

It's my own fault that she doesn't call or come over anymore.  I was tired of her telling me to put Ma in a nursing home and asking me when I was going to take my life back.  She told me that my brother and her can't help me, that Ma needs to be in a home.  She's closed her mind and heart, listening only to my estranged sister who kicked me to the curb several months ago when I asked her for help.

Everyone has an excuse or some reason that makes sense to them as to why they stay away; it hurts both Ma and me.  I feel that I have allowed myself to be my siblings excuse for staying away.  Being the scapegoat of a family sucks, I do not deserve to be discredited by people that I always believed loved me.  Even my mom takes her anger out on me, blaming me for her other children not coming or calling.  It sucks.  Care Giving sucks today.  I am stressed which makes it even more difficult to take the abuse that my mom is flinging at me.

I did make calls today.  Now I will wait for return calls.  It's the holiday weekend, I was told that no one would call until mid-week next week.

Now I wait.

In the meantime, I stopped my mom from walking out the backyard gate.  She was on her way to find her cousins so that she could live with them.  Cousins who have been dead for years.

My mom has no where to go; this is her home.  She believes that her other kids will come through for her.  She believes that my sister will call and take her out so that she can ask her if she can live with her.

She believes that she sees my brother in the backyard, but it's my husband.  She still thinks it's Marty even when I tell her it's not.  She tells me that she wants to see her Great Grandson, she misses seeing him.  He makes her laugh, she loves seeing her "genes" in a cute and young bundle of joy.

Alzheimer's is a horrible disease.  It destroys lives, not just the life of the person suffering with the disease, but the lives of families.  I hate Alzheimer's because it took my family away when I need them the most.  Of all the things I miss in life, I miss my family the most.

27 May 2010

Pool Days

Global warming has allowed us to open our pool a month earlier than we have opened it in the past.  May 26, Tuesday was a high 80 Degree day, perfect for the pool.  The water has been warming up with the use of the solar disks that gather the sun and heat the water.  The water reached 75 yesterday... perfect for the pool.

My mom, she bought 2 new bathing suits in the morning.  She wouldn't listen to me at all about which suit would be good for her.  She bought 2 that I knew were going to be too small.  Whatever.  I bought the suit that I believed would be good for her... just in case.

The last time my mom used a pool was 3 years ago, when we had a pool at the house that I owned before I got married.  She wore a size 24W... a big swimsuit.

Yesterday, she tried on the new suits and they didn't fit.  She came out with her 24W bathing suit on.  I should have taken a picture, it was funny.   Swimsuit hanging below her knees and the booby part hanging so low that it barely covered her tiny boobs.  She had a tee shirt over the swimsuit to cover her top.  My mom looked like a 5 year old refugee.

I got out of the pool and got the bathing suit that I thought would work well for her.  Style and all.  It was dark blue, her favorite color and a two piece with a skirt.  I brought it to her.  Apprehensively she took it to try it on.  It fit.  It looked very cute.  She liked how she looked and even complained about her body being too small up top.

Changing suits was confusing.  She wanted a bathing suit on and didn't care which one she was wearing.  Finally, we had success, she had her bathing suit on and off she went down the hall to the pool outside.

She left her socks on.  I decided to just let her wear the socks, it was too much trouble explaining why she shouldn't have them on in the first place.  Like my husband commented, "at least she can clean the bottom of the pool just walking around."

My mom was happy in the pool.  I got her a float to hang on to as she moved her legs and jumped up and down gently to prance through the water.  She laughed and giggled like a kid.  She did not hallucinate.

PEACE!  I had peace!!!  

I checked her blood pressure after her fun in the pool and it was much lower than it had been in past weeks.  Exercising in the pool is helping her a lot.  She's looking forward to more hot pool days.  Me too!

25 May 2010

No More Sandwiches

My mom loves sandwiches.  I stopped giving her (and me) wheat gluten several months ago when I saw a link between her gluten consumption and her dementia behaviors.  Hallucinations are always prevalent whenever she has gluten, even Spelt Wheat causes her to hallucinate.

I had hoped that Spelt Wheat would work for her because it's not the typical wheat that has been over modified over the years so that it produces more wheat grains.  I read that some folks with gluten intolerance can handle spelt.

Not my mom.

Yesterday, I made her a sandwich for lunch using Spelt bread.  It was about 30 minutes after lunch that she began talking to the flower pot on the railing of the deck.  She walked right up to it, talking and having quite a conversation with the clay pot.  A pot that she believed was a man, a strange man that she said was very handsome.

My mom stood on the porch and flirted with the clay strawberry pot, talking and laughing.  My mom was having so much fun; she believed that the man in the pot was her boyfriend.

"Ma!  What are you doing?  You are two timing dad!"  I said to her when she told me about her new boyfriend, the man in the pot.  He smiles at her and winks.  He doesn't talk.

Last night I was making dinner, she was out on the deck talking to the flower pot; she rushed in like a kid.  "Can he stay for dinner?  Can I invite him in?"  She asked.

"Ma, he can't eat people food.  You can invite him in, but he won't be able to eat."  I explained to her.

She went to the slider and began waving the hallucination to come.  He wouldn't.  He stayed on the railing in the clay pot.  My mom got mad at me.  I checked her blood pressure and it was rising.  Damn!

I gave her a salad for dinner with baked salmon.  She came back off her lunatic ride, one that I believe was triggered by the gluten in the Spelt Wheat.

Sandwiches make my mom nuts.  She loves bread but the carbohydrates cause her sugar to spike, making her hallucinate, making her blood pressure rise and insanity taking center stage.

No more sandwiches!

24 May 2010

I Won!

If I've said it once, I'll say it as many times as it happens... what a difference a day makes.  I feel like I've won the fight this time with Lewy.  Here's hoping that we can win the battle too!

My mom's blood pressure has been high.  No matter what we give her, her blood pressure remained high.  I thought to myself, I bet something is bothering her.

Last night I asked her, "Gee, shouldn't we be replying to dad's note?"

"Shit on that!" She exclaimed.

"What?!  Why?  What could dad have done to make you so angry?"  I said sympathetically for my dad.

"Oh, he writes all this bullshit, "I love you."  Blah blah blah."  She said with a sad face, one of a scorned woman.

She continued, "He is remarried.  I saw the wedding the woman is so beautiful.  She was dressed all in white."

"Oh Ma, you can only get married on Earth, it's why souls want to be born on Earth, so that they can experience love and marriage like you did with Dad."  I said to her factually.

I continued my explanation, hoping to relax her mind.  "We are all sparks of God and we all go through lifetimes so that we can eventually make it back to the big ball of God where love is all there is.  What you saw is one of the beautiful souls making it back to God, you saw her get her wings so that she can fly back to God!  How lucky are you to get to see that?"

My mom looked at me and smiled as she said, "Well, alright, if that's true then we'll give it another shot."  She drifted off to sleep for the night.

This morning my mom woke up with low blood pressure, near normal.  Her cognition was good.  Better than it had been over the last few weeks.

Witnessing again, high blood pressure makes my mom nuttier than usual.  I figured that when my mom gets mad at my dad, or any hallucination, she lets it stew; she has always stewed on things, never confronting the trouble head on.  Now, hallucinations make her angry, her blood pressure goes up and then all bets are off for any peace.

I began reviewing in my mind what I had given to my mom for food.  I did try giving her a little wheat flour in a pita bread.  It had low carbs with only 8mg for one pita.  Like last year when I discovered the connection between her hallucinations, gluten products and her blood sugar (high readings), she was showing similar behaviors.  Could the gluten in the pita have caused her blood sugar to go up so that she hallucinated about my dad, got upset, her blood pressure rose and she stewed... keeping her blood pressure high.

Hmmmmm.... I'll have to keep my attention on food and it's affects with her behaviors and attitudes.

Yesterday I made Golumpkies; cabbage is known to be good for the brain.  Today, she is way better.  I gave her lots of coconut ice cream yesterday too.

Today is a much better day.  I will call the Alzheimer's Association and see what we can do to give both of us breaks from each other.  I hope I can find a male care giver to give me respite breaks.  My mom loves men.  She's still a flirt even in her 80's.

On Saturday, during the height of my upset, I walked around the yard and gazed on a patch of clover growing in the lawn.  I was praying for a sign that better days are ahead.  Personally I felt so bad that I didn't think life could feel any worse.  I prayed to Mother Mary, my favorite Catholic saint.  I prayed for strength and the courage to get through whatever I have to get through with my mom.  I looked down and to my amazement a 4 leaf clover popped out at me.  I bent down and picked it. I put it in water.  It's still alive in the glass of water on the window sill.  Just like my spirit is still alive, the clover was a symbol to me that better days were ahead.  Mother Mary, she answered my prayer, she gave me my sign.  I love Mary.

Last night, happy with the feeling of peace, I looked down on my nightstand and saw a lottery ticket that I had played a few weeks ago.  I picked it up and said, "Gee wouldn't it be cool if this is a winner?"   My husband picked up his computer and went to the state lottery website.  Long story short, I think I won!

I played my mom's number for 2 days.  I did what one would say "boxed" it and payed a good penny for this chance to win a few extra dollars.  Well, I won!

23 May 2010

I Need a Break,,. Regularly!

I need respite and I need it bad.  I cry every day... this is not right.

My mom's insanity is affecting me, it makes my stomach turn in knots.

Am I insane?  

Listening to her talk to her hallucinations and then become angry with me for "interrupting" is adding to my stress.   The twanging string of insanity, day in and day out with the only break being when my ward is sleeping; it's too much.  I need a break... regularly!  Breaks that I can count on, breaks that will allow me to exercise and meditate... work in my garden... or just clean the house.

My mom is feeling good.  She doesn't know that she's sort of schizo, she believes that she's fine.  She believes that she can live on her own and take care of herself.  There's no telling her different, even when I remind her that  she can't operate the TV remote control.  Forget about making herself a cup of tea or coffee, even the Keurig coffee machine is a challenge.

Mom is better than she was a year ago.  She sleeps through the night and talks a lot when she's awake.  Last year she wouldn't talk because she couldn't find her words at all.  Now, she finds her words alright but uses them to tell me about what she "sees" or asks me "Hey did you see Eddie?" , "Look!  Do you see that elephant over there?  See it?!"

Fortunately, her hallucinations are friendly and not scary.  For a long while she hallucinated about "the man" which caused her to call the cops at 2am.  You can read about it in this post - Hello Madame... it's the police!".  We took the phone out of her room to avoid this happening again.

I have hope today, more than yesterday.  I've got a plan in place to find out what our options are to help keep my mom home with me a little longer.  Time that will allow me to find her a nursing home where she can make friends and have other people around... more than just me 24 x 7.  I found a Respite Care Giver's guide on the Alzheimer's website, this is providing me hope.  Respite Care Giver's Guide

Thanks to one of my blogging buddies for posting a comment yesterday telling me about my options for respite.  Thank you Kathy.  Kathy cares for her husband with Lewy Bodies Dementia, it's a wild disease of the brain.  I enjoy reading Kathy's blog because it helps me to realize that I'm not alone.  You can read Kathy's stories about her care giving experiences here - Living with a Thief Named Lewy .

Care Givers need breaks, regular breaks that we can count on.  It's great if you can depend on family and friends but my experience is that you can't depend on anyone with good intentions.  I'm grateful to Kathy for pointing out where I can go for help outside of family.

22 May 2010

I'm Grateful

We're having good days, as good as can be expected with my mom.  She's taking R-Lipoic Acid, L-Aceytl-Carnitine and Coconut Oil every morning.  It appears to help her to focus on tasks, more than she had been previously.

My mom reads and re-reads all the letters that she gets from my dad.  She loves reading "his" words that tell her how much he loves her.  She needs reassurance.

I'm learning about my mom, things that I never knew about her, mostly that she is a bit insecure.  She is jealous of other women, the ones in her hallucinations.  She is worried that these women are going to "steal" my dad away from her.  I'm beginning to realize that this attitude began when she was a little girl and abandoned.

She was the youngest of 4 children, born to Italian immigrants in Roxbury, Massachusetts.  My mom's mom never spoke English and my mom never spoke Italian... she never spoke to her mom.  I can't imagine not being able to communicate with ones mother.

My mom's dad, who adored my mom, worked in the sewers of Boston during this countries first Great Depression Era (I think we're in a depression now but no one wants to admit it.)  My grandfather contracted pneumonia, before penicillin was discovered; he died when my mom was 6.

Her mom lost their home.  They slept in church pews and finally went to live with family.  My mom's oldest brother went off to fight in WWII and was killed in action.  My grandmother was committed to a mental institution.  So was my mom's older sister who always watched out for her.

My mom was left with just her brother Al, a brother that didn't do much for her throughout her life.  Even when she asked him to help her financially when he had money and she did not, he said no.  Instead he told her that she should manage her money better.  My mom never got over his not helping her and her family when she needed help the most.

My mom is now confronting her abandonment issues head on through mental manifestations that appear and often upset her.  Fortunately, we address each issue, one at a time.  It's not always easy for me personally, but we get through it.

The Love Letters From Heaven, notes that she writes to my dad and I send a reply, help.  Playing the role of my dad, she is able to relive the love that they shared.  My dad loved my mom, he loved her so very much, that when he was diagnosed with pancreatic cancer in 1979, he made a point to walk with my mom every day; preparing her for the inevitable, an untimely death 7 months after diagnosis at age 49.

My mom's life seems to be one where she loses her family.  First she lost her birth family to death and insanity.  Now, she's lost her family, the one that she created with my dad.  No one comes.  No one calls.  She asks for everyone all the time.  What do I say?  Nothing.  Instead, I cry because my mom is sad.  She wants her family around her but they chose to stay away.  Yesterday she said to me, "My only wish is for my family to be together again."  I don't know how to make it happen for her, my family doesn't speak to me.

My family believes my mom should be in a nursing home.  I do not.  I did have help from one sister but during my mom's kidney infection, my mom was totally insane, it scared my sister.  She told me that she can't help me, my brother can't help me... no one can help except a nursing home.  I don't agree... I need regular respite breaks, ones that I can count on.

Currently, this much needed help doesn't exist for me.  My family doesn't want to listen to what I've learned about my mom's health, they don't hear me when I speak.  There minds are made up, they will not listen to what I need, they chose to tell me what they think I need.  My family has chosen to close their minds, discrediting me and what I have learned about our mom's health.

My mom doesn't need to be in a home, not yet.  She has plenty of good days.  She can use the bathroom, wash and dress herself.

She hallucinates about my dead father and brother.  The letters help.  She spends hours reading the letters and trying to write back.  Yesterday, she was focused and happy to sit in the yard, looking in the trees for my dad and the angels.  I was able to clean the house.

Here I am, heading in to 4 weeks of Care Giving, 24 x 7, no time off and none in sight.  I teeter on the edge, digging deep within for strength to get through another day of care giving.  I force myself to find the happiness, because there is happiness in life, we just have to open our hearts to see it. 

Family.  We all need one, especially during tough times of illness.  I'm grateful to have a family that loves me.  My husband is awesome, he is my anchor and the greatest blessing in my life.  He is my family, he is the only one who understands my life as a care giver. I'm grateful for his friendship, love and companionship during the rough days.  Together, we will get through this tough time and when we come out on the other end, we will have peace.

20 May 2010

Singing For Dad

Dad's letter was received with a huge smile.  My mom waited all day for dad's reply to the note that she had written and we emailed to Heaven.

Mom sat in bed and read the letter, over and over again.  When I tucked her in she said to me, "He's still crazy about me!  He told me.  He talked about when we went dancing.... he likes me a lot!"  my mom exclaimed with the excitement of a school girl.

"Good night Ma, I'll see you in the morning."  I replied back like I do every night.

My mom woke this morning with a skip in her step.  She danced into the room as she sang, "Goooood Moooorrrrrrrrnnnnnniiiiiiiiiiiiinnnnnnnnnnnnngggggggggg!"

With her radio in her hand, she untangled the cord and attempted to put her headphones buds in her ears.  I helped her and immediate she began singing.  My mom sang with feeling this morning, putting her heart into it.

In the note that dad had sent her from Heaven, he told her that he loves to hear her sing.  He can hear her singing wherever he is and it makes him know that she's OK.  He told her that her voice is improving, that she can carry a tune.

Mom woke up singing and she hasn't stopped.  She's singing for dad.

19 May 2010

Writing Letters to Dad

My mom appears to be clearer today.  She hasn't seen my dad or any other imaginary visitor today.   She asks if I have seen anyone, she forgets that I can't see what she sees.

Coconut Oil appears to be working for my mom, just like it worked for Dr. Newport's husband... my mom's cognition is good.

Last night after dinner, my mom and I replied to my dad's email.  She had sat for a few days, trying to write.  She practiced her handwriting, an activity that kept her occupied and focused for a good long time.

Before we sat to write to dad, my mom held up the heating pad and asked me to heat it in the microwave.  I heated it and handed it over to her.  I told her that we'd write the note to dad after she sat with the heating pad.

I went and had a glass of wine.

In a happy state of mind, my mom and I sat together and I read dad's last note to her.  I began to ask her questions to get her to say what was on her mind.  Writing her thoughts for a few days did help, she was pretty clear with what she wanted to say once she got on the topic.

It's during our writing a note to dad that I learned what my mom did with the heating pad.  She had me heat it for MY DEAD BROTHER ED!  I wanted to laugh, but I didn't.  Inside I was busting a gut, holding in the laugh, something that is very difficult for me.

Later, after we sent Dad his letter, I tucked my mom in for the night.  She said to me, "that was fun tonight, good night dear."

"Good night Ma, see you in the morning" I said to her as I spotted the heating pad resting on the chair where my mom believes my brother was sitting with a backache.

18 May 2010

What a Difference A Day Makes!

What a difference a day makes!  Words that have never been more true than they are today with regard to my mom's cognition and state of being.

She's done with the Cipro, an antibiotic pharma drug that did the trick to rid her of her infection, but it also caused her to become way more insane.

If there are side effects to a drug, my mom will show them; this is what I'm learning with my mom's LBD condition.

My mom is taking herbals for her high blood pressure.  They appear to be working well for her, this morning her blood pressure was back to normal.  The Cardio supplement has cordyceps as an ingredient, it also works for senility in seniors... I think it's working for her heart and her brain.  Yay!

My mom takes B vitamins, folate, Choline, Vitamin E, Vitamin D3, L-Acetyl Carnitine, R-Lipoic Acid and Coconut Oil.

Today, my mom appears way better.  Not 100%, not the mom that I remember from just a few years ago, but she appears to be coming to life.

Could it be the combination of the amino acids and coconut oil that are giving her a wicked good day today?

Last week I read an article by Dr. Newport, who's husband was diagnosed with Alzheimer's.  She discovered that coconut oil improved her husbands cognition.

He took the clock test, the test where the patient draws a clock from memory; initially, he couldn't do it.  Then, after consuming coconut oil, his cognition improved, he drew the clock.  I haven't given my mom the clock test again.  She did it 6 months ago when we visited a Neurologist and she was diagnosed with moderate staged Alzheimer's.  She didn't do it very well.

We'll see... maybe the combination of her supplements with coconut oil will reverse her disease or at least arrest any progression.  My fingers are crossed and  I have hope for her.

I began cooking with coconut oil.  Good quality, high grade coconut oil with MCT's (Mid Chain Triglicerides.)  Every day my mom drinks coconut milk with her oatmeal.  There's a new product that I buy at Whole Foods, SO brand makes Coconut Milk.  It's amazingly delicious.  I buy the plain coconut milk cream and use it in coffee.  They also make a coconut flavored coconut milk ice cream that is heavenly.  My mom loves it.  After she eats it, she is always in a happy mood.


Things are looking up.  Coconut milk and the amino acids seem to be working.  Wouldn't it be cool if coconut oil is the cure for Alzheimer's?

Here's the article by Dr. Newport -What If There Was a Cure for Alzheimer's?

What a difference a day makes!

17 May 2010

You Can't Do Nothing Right

It was a rough weekend.  Saturday my mom was mean to me.  I looked at the side effects of the Cipro that was prescribed to clear her infection.  Hallucinations.  Aggitation.  Insomnia.  My mom had all 3 and on Saturday she was in a wild state of mind.

My mom was hallucinating that she had coversations with me or some other hallucination.  She was mad at me because of her hallucination.  I was being blamed for a figment of her imagination.

How could I win?

I cried.  I sobbed.  Saturday sucked.  I felt trapped and isolated.  Depression was not too far away from taking a grip on my soul.  I didn't even feel like weeding my garden, something that usually brings me joy.  But, I forced myself to get out in the sun and in my garden.  Pulling weeds, listening to the birds and watching the cats race toward each other at full speed then jump and do a chest bump, restored a bit of peace within.

We rode it out.

Yesterday was a pretty good day.  My mom was hallucinating but she was laughing and enjoying her visitors. She was able to fold her own laundry and even watched the Red Sox play baseball.  I had time to work in the yard.  I pulled weeds and it felt great.

Everything was great until I gave my mom her last Cipro.  I tucked her in and was ready to retire for the day too.  I was tired.

I heard foot steps, my mom's steps so I ran upstairs to check on her.  She was standing in my MIL's doorway, talking to her.  My mom looked at me and yelled.  She was upset about something, "How can you hold back on me?  Why aren't you telling me?!"  she yelled.

My MIL and I just stared.  It was weird.  Then my mom said, "Oh, you can't do nothing right, get out of my face.  I can't stand the sight of you!"

Frozen in shock, I said nothing.  I attempted to get her to go to bed.  She pulled her arm away as she said, "Don't touch me!"

I wanted to cry.

I didn't cry.  I was too pissed off that my mother was insulting me.  I told her that it is unacceptable for her to speak with me the way that she did.  I told her that I was ready to call 911 to have the ambulance take her to a psych ward because I did not deserve the abuse and will not stand for it.  My mom then said to me, "Wow, you are strong.  Where did you get your strength?"

My mom, she expected me to cry.  She was tearing me down in front of my MIL in order to make herself feel better.

Last night I realized that my mom has torn me down with words for as long as I can remember.  My husband noticed it when he first started dating me, that my mom always tore me down in front of others.  She wouldn't lift me up and say, "Oh, you did a great job!"  Instead she would tell me that I could do better.  No wonder I am an over achiever in everything that I do.  I have been looking for her approval my entire life!  I looked for approval from my siblings too but never got it.  I lived my life based on a belief, that if I could do things really well, then maybe my family would love me.  It seems to have had the opposite affect, my family seems to resent me for all that I am able to do... especially taking care of Ma.  Now, I don't see any of them.

When my mom yelled those words at me, "You can't do nothing right!", my life flashed before my eyes and I finally understood that all I ever wanted was for my family to hear me.  To date, no one hears me, no one listens and no one cares about anything except those things that benefit themselves.  I wish I had this epiphany years ago, I'd more than likely have saved the trouble of trying to win my family over by over extending myself.

I'd be lying if I said that I wasn't sad for losing my family.  I am saddened, mostly because it is a lifelong belief that has been discredited.  However, when my mom finally does get on that bus to heaven, I'll have peace.

In my future, I enjoy my new life with my husband.  Finally, I have a family that hears me and loves me for who I am.

14 May 2010

Shakti and the Mole

I decide to lay on the futon and close my eyes. I was tired. The cats were out, my mom was occupied with something and I could rest. Yay!

Just as I was drifting off to sleep, Shakti comes in and jumps on me with her wet feet. I feel something wiggling on my side.


I freak. I look for a jar to capture it.

It got away!

It made its way into the heater baseboards… fuck! The thing was squealing, Shakti was so proud. She was playing cat and mouse. She was having a grand time; I was not.  She was looking at me as to say, "Hey, I brought you lunch!"

By this time, the mothers were watching me rip off the baseboard covers to get to the mouse.

It escaped.

It made a noise.

I screamed.

MIL got a flash light and was looking under the futon, she wanted to see the mole. The light scared the mole and it came out from the baseboard heater.

Shakti was psyched... until I got the glass jar and captured it.

I couldn’t kill it so I took it out behind the fence, flung the jar and it landed in the stream. The cats can try to catch it another day.  For now, the mole escaped and has quite a tale to tell its little mole friends.

I Have Learned

Mom's feeling better today.  The infection is going away.  I am beginning to think that she had this infection for a long time.  She complained about a backache in her lower back.  I didn't read it as a warning that something was up with her kidneys.  Mom has complained about back pain for as long as I can remember.

A heating pad brought relief.  

My mom's hallucinations became an everyday occurrence, I accepted them as the new normal.  I have read a lot about Lewy Bodies Dementia, my mom has many of the symptoms.  Of course we'll never know for sure if it is LBD until she passes and we have an autopsy of her brain.

I have learned.

What I have learned is to pay attention to odd behavior, quick changes  I now know that a UTI can cause hallucinations, especially in my mom.  Put a kidney infection on top of it and she's surely a proverbial basket case, freaked out about what she's "seeing."

Hindsight is always 20/20

Looking in the rear view mirror of the past few months, I realize that my mom's infection was making both of us insane.  It sucked.  I cried a lot.  Now I know that when she has delirium, I need to have her blood and urine tested for a problem.  Antibiotics are helping, my mom even thanked me last night for all that I do for her. WOW!

I have learned that all medicine, natural or pharmaceutical needs to be treated with respect.  Just because something is natural doesn't mean it's good for you.  Same is true for the synthetic pharma drugs.  Both have a place and both need a professional to assist with the administering of the medicine.

I'm grateful that we have a Naturopath Doctor and Medical Doctors who work together through me to help my mom have more good days.  

My mom's kidney infection caused her to have elevated blood pressure.  REALLY HIGH BLOOD PRESSURE.   It freaked me out, as it should.

My mom's hallucinations were intense for both of us.  I noticed that when her blood pressure was high she hallucinated.  If her blood sugar was high too, she'd be a colossal bitch.

Lisinopril for high blood pressure was increased so that it would lower her blood pressure.  Her blood pressure went up.  Her kidneys seemed to be having a bad reaction to the Lisinopril... was she rebounding on the pill?  Rebounding is when a med that you are taking begins to do the opposite of what it was initially intended to treat.

High blood pressure brought on the macular hemorrhage in her "magic eye." She will lose her vision in her eye that she believes allows her to see the dead, specifically my brother and my dad.  She's OK with losing her vision in the one eye, she has another eye that works much better for seeing reality.  She is also happy that even though she may not see my dad anymore, she can still email him.  The email notes make her very happy. I have learned.

13 May 2010

Beyond the Grave

Care Giving for a sick parent is hard.  Period.  End of story.

My mom has a kidney infection and a UTI.  The antibiotic is perpetuating her hallucinations, a side effect of Cipro.  Fortunately, she's hallucinating about my brother and my dad.

The email notes that she exchanges with my dad in Heaven are the highlight of her day.  She loves writing him notes and enjoys reading the replies even more.  My mom, she sleeps with her letters from Dad.

Yesterday she had an eye doctor appointment.  Her vision is worse.  She has macular hemmorhaging which can cause her to go blind.  It was brought on by her high blood pressure, last week it was crazy high, all brought on by her infections.

She'll see a Retina specialist soon.  My mom told me that she doesn't want an operation to fix her vision, she enjoys how her "magic eye" helps her to see the dead.

My mom has lost her mind, but she's happy living in a world of illusion where she believes that my Dad is communicating with her from beyond the grave.  Hey, maybe he is, maybe he's inspiring me with his words in order to bring comfort to my mom from beyond the grave?

12 May 2010

Update On My Mom

My mom has a UTI and a kidney infection.  She is on antibiotics.  I'm hopeful that once the infection is gone she won't hallucinate as much.  I'm also expecting improvement in her cognition.

I've been reading about urinary tract infections in Lewy Bodies Dementia patients for over a year.  I read the stories, the nightmares that other Care Givers had experienced.   LBD patients who have an infection will hallucinate a lot.  My mom began talking to the hallucinations and would get mad at me for interrupting.  I couldn't win.

I cried... I cried A LOT.  I was ready to call 911 and have the ambulance take my mom to a psych ward of a hospital for an evaluation.  I was giving up on my mom, I was mentally ready to send her to a nursing home.

Fishing for an easy solution I remembered the advice of the LBD Yahoo Community, they recommend tests to check for infection, mostly a urinary tract infection.  This is very common in LBD patients and is often the cause of wild behavior.

I called my mom's kidney doctor and set up the tests.  They came back positive, she does have an infection in her kidneys and her urinary tract.  I think she's had it for awhile.  In hindsight, my mom has had a backache for a long time.  Maybe I could have avoided all the insanity of chasing her hallucinations if we had her checked out sooner?

My mom's ND was the one who told me that my mom's kidney trouble could be causing her elevated blood pressure.  He prescribed Pellitory, an herbal tincture that he made for her in his office.  She takes it 2 x's a day.

2 weeks ago my mom's BUN was 53, very high.  2 weeks after taking Pellitory, her BUN is 28.  Her Creatine numbers are lower too, 1.2 instead of where it had been at 1.5.

Her hallucinations are not as wild.  Her blood pressure is coming down and her spirits are good.

Today things are better than they've been in a very long time.  I'm hopeful.  I'm encouraged.

I read an article today about a man who began taking Coconut Oil and his cognition changed for the better.  There's a test that is given, the patient needs to draw a clock from memory.  It's very difficult for those folks with Alzheimer's and the different stages of Alzheimer's is determined by how well the individual draws the clock.  Here's the article by Dr. Mary Newport had written about coconut oil:  What if there was a cure for Alzheimer's Disease and no one knew? 

I found a new product at Whole Foods, ice cream made with Coconut Milk.  I've been giving it to my mom for the last few days.  Could the coconut milk be helping her cognition and finding words... big words?

I don't know yet...

I did read that the ketones in Coconut oil helps the body absorb nutrients, including amino acids... the RLA and L-Aceytl Carnitine are amino acids.

I bought coconuts today and had my mom drink the milk from the coconut.

So, with the clearing of the infection and the amino acids and ketone addition to her diet... we may be able to cure my mom of her dementia.  I believe in miracles.  I will not quit on her.  We never fail until we quit, so I will pick myself up, dust myself off and march forward toward success.

11 May 2010

Notes from Heaven

The Love Letters From Heaven, the love notes that my mom is writing to my dad and I am sending a reply, are helping my mom to have happier days.

I've had success using the email notes from my dad to get my mom to do things like eat more dark leafy vegetables.  

Yesterday when we went shopping for vegetables I asked her what she wanted and she said, "I think you better get me more lettuce."

My mom is paranoid.  She hides stuff on herself all the time.  I spend about 3 to 4 hours a day looking for her "stolen" items.  As anyone who cares for someone with Lewy Bodies Dementia, you don't argue, even if you are right.

I had to come up with a solution so that I can save aggravation and time.  I had my dad tell my mom that she should consider giving up her purse.

Well, she did give up carrying a purse.  But she hasn't given me all her stuff to keep safe for her until she needs it. I believe this will stop the "my stuff has been stolen!" fright that my mom has a lot.  She's always been paranoid where her purse is concerned, no wonder she's such a basket case now that she can't remember where she "tucked" it.

I'm using my dad's light energy effigy to convince my mom that her visitors are a different form of energy and can't move or touch stuff on Earth.  This appears to be working.

I've told her that we can't interfere with stuff associated with Heaven and my dad (all folks that have died) can't do anything to interfere with us on Earth.  She seems to understand.  I explained to her that these entities are just messing with her and to ignore them and not give them her power.

My dad was a believer in thoughts being real; he taught me that when we think about someone, we are giving them our power.  Reminding my mom of my dad's wisdom, she shook her head in agreement.  The scary visitors seem to have vanished.

My days are spent helping my mom understand how Heaven and Earth works.  I am teaching her all the stuff that I learned throughout all the years that I've studied Buddhism, Hinduism, Catholicism and Judaism.

My dad, he taught me a lot too.  He believed that energy can never be destroyed, he taught me that we never die, that we just transform into a different energy.  This belief has given me comfort, knowing that when our Earth Suits are worn out, our energy lives on, we never die!

My mom, she's afraid to die.  

She told me this morning that she is scared of the unknown associated with death and dying.  I assured her that we don't really die, that our worn out bodies stop working and our souls go back to the land of love and peace.

Explaining my dad's theory about life and death, my mom seemed to relax.  I told her that death is part of life and when the time comes, she's not going to give a shit because she will feel amazing.  My mom smiled and went on to tell me what my dad had written to her in his note from Heaven.

She is finding her words today.  I love it when she can find her words.  It's easier to care for her when she can tell me exactly what she wants.  Playing "guess what I'm thinking" gets really tiring.  I can't tell you how many times I've heard, "you know that thing."

We'll hopefully hear the results of her tests today.  If we can stop her hallucinations, boy will life get 100 times easier around here!

10 May 2010


This weekend was tough.  I knew that I wasn't getting a break from Care Giving; I expected a bad time and sure enough, I got a bad time.

My mom seems to have had her brain "twanged."  She has been hallucinating a lot.  Mostly seeing my dad and my brother.  On Saturday, she believed that she saw my dead brother buried up to his neck in dirt.  He was smiling at her.  She thought she was seeing him "go to Heaven" again.  She cried.

Yesterday, she believed she was with my dad.  She was talking out loud to him and would get mad if I "interrupted."  My mom got mean, she made me cry.  Boy, did I cry.

Thank God for Sara Silverman.  I'm reading her book "The Bedwetter:  Stories of Courage, Redemption and Pee" on my Kindle, she was making me laugh when my mom was in her bitchiest state of mind yesterday.  Thank God.  I wish I could thank Sara Silverman.  She's a good writer and can certainly tell a good story.  I will be sad when I've read the last page... Sara, please write another book.  You are funny.

Today we are going to the doctors' to give a blood and urine sample, I think my mom has a Urinary Tract Infection or something else going on with her Kidneys.  It all started to go downhill when her Lisinopril dosage was upped from 10 mg to 20 mg.  I know that Lisinopril can injure the kidneys.  I also heard that folks with my mom's condition are prone to UTI's, infections that can cause mood swings and hallucinations.

It will be awesome to calm her craziness, her obsession with getting on the bus to Heaven, her pacing and her paranoia.

I do see glimmers of hope when she takes the Carnitine and R-Lipoic Acid.  She is finding her words.  She is hallucinating too, only now she can tell me what she's seeing... all day long.

My mom had her brain strings twanged, I think it's the UTI that caused the twang.

08 May 2010

It's Working

It's been a wild ride this week.  My mom's hallucinations were intense, especially when she got mad at my dad because she thought he was with 2 "Evil Bitches."

I have candid video of my mom telling me all about the bitches.   We just pulled into the driveway and she began to talk.  I shut off the truck engine and turned on my video camera.  It's in this video that I came up with the idea of putting them in the stones and burying them.  My mom loved the idea.

We had the ceremony, the Bitches... well, they're gone.... Yay!

My mom, she's in love with my dad again.  She loves reading his letters to her, letters that I write based on things she says to me.  It is a form of manipulation but it works to keep her happy and calm.  She's easier to care for when she's in good spirits.

I had to come up with a way to divert her attention.  The ceremonies that we had, worked because I had her involved.  I had her do just about everything.  The power of the mind is amazing.  I helped my mom face her fear, we captured it and got rid of it.

The phrases that I had her say were for her subconscious mind to hear, it experienced the body motions which was the action needed to make it stick.  My mom, she did chase her own hallucinations away, even though she believes that I did it.  All I did was guide her and help her to believe.

It's Working!

My mom buried her hallucinations that were scaring her, she believes that they are safe in Hell.

My mom appears to be doing well today.  She is hallucinating, mostly about nuns and my dead brother Ed.  She thinks the hallucinations are singing to her, but it's really her mp3 player.

She's happy.

She understands that she can't speak to my dad because we are different forms of energy.  Thank God, she keeps stalking some guy at Whole Foods that she believes is my dad.  She wants to go there every day to "look" at him.

The email connection, the "Love Letter's From Heaven" are giving her peace.  She's reliving her life with my dad, the happy times... it's really great.  I don't know how long it will last but we're enjoying every minute.

Although everyone thinks I'm totally insane, I do have hope that we find a solution to help my mom find her words.  She's able to think, but she can't spit the right word out.  This frustrates her and she gets upset.  Her blood pressure rises and then she begins to hallucinate.  Quite a cycle.

Today however, she's in good spirits.  She is finding her words.  It's totally crazy how fast things change.

My mom wants to write my dad an email in the morning.  We'll do it together over coffee in the morning.  She wants to make sure that he sees their Great Grandson, she talks about him all the time and how much she wants my dad to see him.  We'll attach a picture of GG to the email.  My mom loves picking out the pictures that she wants my dad to have.

I told my mom that because the pictures are digitized, my dad can transform the format into one where he could print the pictures on Angel Paper.  Now, she wants to send him pictures all the time.  It's like she's trying to catch him up on the last 33 years that he's been dead.

My mom is afraid to die.  She wants to be with my dad.  It's a quandry that I believe I've solved.  It's only been a few days but things have settled down.  My days are no longer hell, which is a huge blessing.

It's working! 

All I did was listen to her and figure out how I could make up some crazy story that she would believe.  The crazier the better.  It was fun to see her fright go away when we buried the stones with the garlic.

07 May 2010

The Evil Bitches Banishing Ceremony

Yesterday we had the Evil Bitches Banishing Ceremony, the final step to rid my mom of 2 hallucinations that were making her mad.

It worked!

My mom's blood pressure went down to the normal range as soon as we began the ritual 2 days ago.  Once they were buried and the garlic bud planted on top of the rock (so I can use the growing garlic as a sign that the Bitches are in Hell) my mom relaxed.  She smiled.

"Susie, the sun is out.  Hurry, it's time to bury the Bitches!" My mom exclaimed to me yesterday morning as I attempted to make it through my Yoga exercises.

I told my mom that it's an extra good omen that it was raining; the rain was sealing the Bitches into the stones for a safe delivery to Hell.  I also told my mom that when the sun came out, we would bury the stones with the evil entities inside.  I didn't expect the sun until afternoon, but it decided to spring out early.  We were outside as soon as the sun appeared to be burning off the clouds.

Here is a video of the Ceremony, the Evil Bitches Banishing Ceremony, the Ceremony that was sending my mom's hallucinations away.

It worked.  I believe it worked because I had my mom do it.  Having my mom do the actions is also my safety net in case they come back.  I can tell her, "Ooops, we must have done something wrong, let's do it again."

06 May 2010

The Evil Bitches Banishing Ritual

It's been a bit intense, living with my mom's hallucinations.  Often I'm left feeling helpless, not knowing what to do except ride out the mental storm with my mom as Captain of the SS Crazy Ship.  When the ship has sailed, there's nothing left to do but wait and bite my tongue; not as easy as it sounds.

I've been noticing that when my mom gets upset about something, it morphs into things from her past that bothered her.  We are working through her issues that she suppressed her entire life.  Oh joy!

I did learn yesterday that the 2 Bitches in her hallucination are 2 women that she went to High School with back in the late 1940's.  Last week I found her High School Year Book and thought she'd like to look at it.  

My mom was in Maine over the weekend with my sister and my brother-in-law, my mom thought my brother-in-law was my dad.  Mom, she was in her glory, believing that she was with our dad.  Brad danced with my mom... she was on a cloud.

Bedtime came and Brad retired to his room.  My mom wondered where he went and this is when the trouble began.  My mom became angry, REALLY ANGRY.  My poor sister got to experience a wicked storm, generated by my mom's hallucinations.

I spoke to my mom on Saturday morning.  She told me that my sister was "too busy."  My mom wanted my sister to sit with her.  Don, she had no idea that my mom wanted her to sit and talk to her.  I'm assuming that my mom saw my sister and the neighbor outside with my brother-in-law; she must have thought they were trying to steal my dad from her.

I know the scenario above sounds crazy but we are dealing with a crazy person.  I can see how my mom felt snubbed and her upset manifested into hallucinations that pissed her off to the point where she could "spit nails," one of her favorite ways to tell us that she was mad.

My mom came home and has been pissed off for 3 days.  This morning, she woke up happy and excited for the day.  Today we bury the Evil Bitches in order to banish them to Hell.

After our ceremony yesterday her blood pressure went down to a normal range... IT WORKED!  Today we'll bury the upset and write Dad an email note.  My mom is anxious to communicate with him.

Here is the video that I made yesterday of the Evil Bitches Banishing Ritual.  My mom was into it.  I winged it doing the best to convince my mom that we really were doing a ritual to get rid of the 2 women that she calls bitches.  She tried to remember their names but I reminded her that my dad always told us that the best way to give someone your power is to talk about them... my mom understood this and we chose not to give them any power.

Tomorrow, I'll write a post with the video that I had taken today during The Evil Bitches Banishing Ceremony.... here is the video from the ritual that we performed yesterday.  The ritual made my mom happy.

04 May 2010

The Bitches

For a few days, I've been a bit hesitant to give my mom her "Love Letter From Heaven."  She has been upset about my dad running around with women.  She sees the women in her bed... women that don't exist; she's hallucinating.  I never knew that my mom was the jealous type.

I did not get the expected result from my dad's letter. After I gave it to her this morning she got quiet and I could see her stewing. She kept telling me "everything is going to be OK." All I could think is, "Uh oh..." my mom never says that phrase.

My mom's blood pressure kept going up. I gave her roasted garlic with olive oil, she ate a few buds. Her blood pressure came down a little. She was not finding her words, which was making her angry. We were in a bad tail spin and I wasn't sure how to pull her out of it.

I rubbed her back. I gave her Reiki. I talked calmly. I had her listen to her music. She sang. Her blood pressure began to come down... then she'd get mad and it would go up again. She wanted to "go home." She didn't like the Sue she was seeing this morning so I changed my cloths so that I'd become a different Sue, maybe a Sue that she liked. This worked... she likes the "new" Sue.

It was hard to get the story from her since she was having trouble finding her words, especially when her blood pressure is elevated. I had to do something. 

I took her out for a drive in the truck.  I had the windows rolled down and her MP3 player plugged into my stereo.  I put the volume up high and we drove around singing out loud.   The drive calmed her.

I knew that if I could get my mom to sing, it would lower her blood pressure.  She also wanted to go out but didn't know where she wanted to go.  Our little ride served a multiple purpose.

My mom began to talk coherent sentences when we pulled into the driveway.  I shut off the truck and turned on the camera as soon as I noticed she was telling me what was bothering her.

It appears that there are these 2 women, my mom calls them "Bitches."  After she called them the B word she said, "Ah, now that felt good."  Then she cracked a smile as she continued to talk about the bitches.  I told her to call them the C word if she wanted, I wouldn't tell on her.  "Oh no, I could never say that word." She replied with a laugh.

The hallucination of the 2 women has her angry.  She's been angry about these 2 women since the first time she saw them up in Maine over the weekend.  These are the women that my mom told my sister that she wanted to "kick the shit out of them."  This sort of behavior is out of character for my mom, she doesn't swear.

We sat in the truck and my mom told me about the women.  She was angry with my dad because she thought that he was running around with them; "they are no good little shits." She exclaimed.  When I gave her the letter from dad this morning, she got upset, she didn't believe my dad's letter because she "saw him" with the women.

I thought fast...

"Oh Ma, are you going to believe these women, these nasty women who belong in Hell for all Eternity or are you going to believe dad who loves you more than anything, he's crazy about you."  I said to my mom.

I continued, "Ma, these women are trying to make you believe something that isn't true.  They have the ability to make illusions.  You thought you were seeing dad but it was a dad imposter.  They want you mad at dad because that's what keeps him away, when you are mad you don't see dad, remember?"

It was as though I struck a cord.  Immediately, her hallucination story plot changed, it was my brother Ed in bed with the 2 women.  She doesn't like them.  The women upset her, she's mad that my brother Ed was with them.

My mom talked about the letter and began to feel happy, that my dad loves her.  I told her that my dad would be showing up with a limo when it's her time.  I told her that there's no way she's taking the bus like the other people.  This made her feel special and she shook her head in agreement, as though I told her something that was old news.

My mom was still upset about the women.  I told her that we could try capturing them in a rock and then burying the rock so that they get shot into Hell for all Eternity.

Initially, she didn't like the idea but as we walked to the house, she warmed up to the thought of sending the bitches to hell in a rock.  Our next little walk around the yard will be to look for the perfect rocks to capture the bad souls and banish them back to hell.

Ok... if this idea sounds familiar, it's the plot from the TV Series Reaper.  God, I loved that show, it always made me laugh.  I'm glad I watched it because it gave me the idea about capturing the bad souls so that my mom can help me bury them... hopefully banishing them from her mind.  It's illogical but I've learned that logic doesn't work with my mom's brain.

Now, my mom is feeling a bit better.  She is not angry with my dad.  She told me that my dad couldn't be with those women because he's the guy in charge.  I agreed with her and suggested that we walk around the yard looking for a couple of rocks that I could use to capture those two nasty spirits and send them off to hell by burying the rocks in the Earth ... she smiled a real smile, the first one that she gave me all day. 

03 May 2010

A Side Project: Love Letters From Heaven | Back Door Logic

A Side Project: Love Letters From Heaven Back Door Logic

I'm An Angel

"Good Morning... I feel really happy.  Today will be a great day!"  My mom proclaimed as she walked into the sunroom this morning.

It was now after 8 AM and my mom was just waking up from her restful night.  I was up at 5:03AM, thanks to Sammy Mammy and Shakti Lakti.  Both cats were hungry... both cats took turns to get me out of bed. 

I woke up.

I fed the cats and they took a little nap.  They're beginning to realize that I won't let them out until 9am when the neighborhood wakes up and the fox in the woods goes to sleep.

7:30 AM

I began to get nervous, thinking that my mom had passed in her sleep, while I was sitting in the sunroom, enjoying the peace as I drank a cup of coffee.  I nearly jumped up to check but realized that if she had died in her sleep, no sense killing the joy the silent morning was providing to me.  I also knew that once I walked into her room, the floor would squeek and she'd wake up.  I wanted to be ready for my mom being awake, it begins a busy day once she's awake.

I did check on her about 8 this morning.  She was breathing, I saw her blankets moving up and down in a calm rhythm of her breath.  The floor squeeked.  The kittens chased me down into her room and Savita hissed... all noises that stirred my mom.  Within 5 minutes, my mom was walking down the hall when she proclaimed that today would be a great day.

She kept telling me that she had so much to tell me, so many stories to share with me.  When I was setting her hair this morning she talked to me like she always talked to her hairdresser; telling stories to her old friend.

My mom told me how she saw the nuns at the party... a big party in Maine.  She wants me to come to the party, her party.  I keep telling her that I can't go ... however, I asked her if she'd be the first one that I see at MY party after I've had a chance to live my life with my new husband.

My mom believed that she saw my dad in Maine.  She hasn't told me about dancing with him or telling my sister that she wanted to 'kick the shit out of..." the woman that she thinks is with my dad in Heaven.  It's so not like my mom to say words like that let alone think the thought.  I don't know if my mom remembers the anger that she had on Saturday night.  The night that freaked out my sister, the night my sister realized what I've been experiencing and why mom is not in a nursing home.  Donna gets it.  She understands the importance of what we are doing for our mom. 

I'm excited because I now have one of my siblings to share the burden as well as the happy times.  Mom makes us laugh.  Just the other day my mom said to Donna after her neighbor had left, "Does she know who I am?"  My sister said, "Of course, Beverly knows that you are my mom." 

My mom replied, "No, no, does she know that I'm an angel?" 

Earlier during the day my sister told my mom that she is an angel.  My mom, she is an angel... well, as long as her blood pressure and blood sugar are normal, she's an angel.

A Side Project: Love Letters From Heaven

My mom had an OK time in Maine until she realized that my brother-in-law was not my dad. Brad danced with her while my sister made dinner on Saturday. My mom was so happy, she was in her glory thinking that she was with my dad.  

Mom's been carrying my dad's driver's license around since passed.  On Saturday when she believed that my brother-in-law was my dad, she said, "Here's your driver's license."  She gave "my dad" his license back.

When Brad left to go to sleep, my mom said to my sister, “Where did he go?” She got so mad thinking that he was with all the guys (the ones she sees in her hallucinations) and then said something to my sister about “some bitch that she was going to punch in the face if she was with my dad.”

She believes that my dad has a new wife in Heaven. I’ve told her that we can only get married on Earth, that’s why we come to Earth, to live a happy life. Once we die, we can’t participate in Earth activities, we can only watch.

My sister learned the hard way what I’ve been trying to explain to her about our mom’s diet and mental state. My mom’s blood sugar must have been on the high side (too much gluten free) and when my “dad” went away on Saturday and then she realized Brad wasn’t my dad, she got upset, making her blood pressure go up. I feel bad that my mom cried and my sister had to experience her sadness.  Seeing my mom cry shakes me to my core.

I’m beginning to wonder if the long trips up to Maine could be too much for her.  The change seems to confuse her and she doesn't sleep well.

My mom also keeps talking about “the bus” which will take her to heaven. She wants to get on the bus and walks around trying to get in line with the other dead people. She’s really bummed that they won’t let her get in line, she wants to be with my dad very badly. She wants me to go with her, I told her there’s no way I’m going, not yet, I have more living to do.

In an effort to calm my mom down and try to control when dad is coming back, a question that I can't answer without causing myself trouble, I had an idea.  A solution, make my dad an email address so that he could write her love letters from heaven.

I told my mom that Dream Master helped me to hook up a computer connection between heaven and earth so that my dad could write her notes through the computer. I sent her the first note yesterday when my sister called on their drive home from Maine to tell me that she “broke our mom.”  I spoke with my mom, she was so sad, she started to cry when she was talking to me.

Here's the letter that I told my mom about and will let her read for herself this morning.

Dear Jo,

I love you and I always will. You are the ONLY one for me.

I'm sorry that I seem to ignore you at the party's that you have been attending, but it's not your time. I am waiting for you... I will be the first one you see at your big Welcome Home to Heaven party, when you are driven to Heaven in a Limo... that's when you'll really get to see me and be with me.

Not right now, OK? I am still crazy about you and love the feeling that you give me when you notice me, just like always.

Relax. Enjoy your good health and our kids, all of them love you.

Eddie is here with me, he loves hearing you play the piano. I do too, your music fills me with joy.

You should really eat more dark leafy vegetables, they will help you to feel stronger.

Be happy. Stay with God.

Your Ed
So, we'll see if the Love Letters from Heaven works to keep my mom calm and her blood pressure from rising... both key in providing good days for her and me. 

You can follow my new blog at http://lovelettersfromheaven.blogspot.com/

I'll use my dad's journals that he had written nearly 40 years ago, journals where he wrote about my mom and how much he loved her.  He wrote about the days when he met her at the dance hall and knew that she was the one for him.  He chased her and he caught her.  Dad was always crazy about my mom.  They married, had 5 kids and then he died when he was only 49 of Pancreatic Cancer... my mom just turned 50.  My mom loves my dad.  She misses him a lot.  She wants to go to her big Welcome Home to Heaven party, she wants to be with my dad. 

01 May 2010

The Sanity Line is Fuzzy... But She's Happy

My mom is in Maine and we have a couple of days off from Care Giving.  Personally, I enjoy the time away from my mom but I can't help thinking about her.  I wonder how she is and if she's having happy hallucinations about my dad. 

She was excited about going to Maine with my sister, last time she had gone a few weeks ago, she believed that my brother-in-law sleeping on the sofa was my dad.  She wanted my sister to call our Naturopath Doctor so that he could help him, after all, he'd been dead for over 30 years.

Logic is out the window when it comes to someone with Lewy Bodies Dementia.  Their hallucinations are so real that it's difficult for them to distinguish between dreams and reality.  No matter, the more illogical the explanation the more believable it is in the mind of the demented.  All we can do is help her to feel happy so that the hallucinations are pleasant.

Dream Master used to help.  Now my mom gets mad when I call to "bother him."  She tells me that she likes the visitors.  She doesn't like the name Dream Master so we changed it to Sunshine Maker.

In my mom's mind, my dad is "Heaven's Bus Driver."  He drives limos full of newly deceased souls up to heaven.  My mom, she wants to go on the bus with them because she wants to ask my dad to marry her again; she wants to be with him. 

Yesterday, when we were doing a bit of shopping to set her up with food for her little trip up to Maine, my mom told me all about a big party that she had attended.  She talked about this party as though I knew about it. 

"Susie, your dad, he was at the party.  I saw him and he saw me.  He is so good looking, just like when I first met him.  I was chasing him all around the party!"  My mom said to me with a little light in her eyes and a giggle in her voice.  My mom, she misses my dad and wants to be with him, even if she appears to be chasing him.  She is trying to be cool, making him chase her but he won't, he just watches her chase him.

"Do you want to come with me?"  She asked with a big smile on her face. 

"Where are you going?"  I had asked.

Matter of factly she said, "Oh, do you want to come to the party with me?  We can get on the bus.  Your dad will take us in a limo, I saw him driving a limo.  Do you want to come?"  My mom asked.

"No, I'm sorry Ma, I don't want to die.  Once you go you can't come back.  Once we die it's over, our bodies are gone so we can't enjoy the things that we enjoy on Earth.  I'm not ready to die, I just got married for God's sake... I haven't even had a honeymoon yet!  If you want to go you can go but you won't be able to come back."  I tried to explain.

I don't think she can distinguish the line between the living and the dead.  She sees my deceased brother and my father, she talks to them and now they are answering her.  Fortunately, her hallucinations are telling her that they can't eat Earth food. 

My mom is happy.  She talks to me about her visitors, they entertain her and motivate her to exercise; mom walks from window to window, looking and then out in the yard, walking around and looking over the fence to see the new souls waiting for the bus to heaven. 

My mom singing to her MP3 music... here she is humming along to "A Beautiful Mess" by Jason Mraz.

Music is important to my mom's happiness.  She listens to her MP3 player all the time, even when we go shopping.  She loves Jason Mraz and his song, "A Beautiful Mess."  Yesterday, walking around the supermarket, she was singing out loud and out of tune... it put a smile on my face and a laugh in my heart. 

My mom, she believes the guy on Family Feud talks to her and wants her to win.  She tries to win every day, hoping to win a car, she sits in front of the TV and tries to play.  I don't know what I'll tell her if she believes that she's won a car. 

The sanity line is fuzzy, but she's happy.