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.

Sometimes it Takes Two Days

My mom is better today, much better.  Dad's visiting her.

Yesterday morning, when she woke up, she was fine.  I wrote my post and told the world that my mom was better after a nights rest.

Everything was fine.   I really don't know what happened between the time I gave her oatmeal and blueberries for breakfast and the moment she turned angry.

I was on the phone with a colleague, discussing source code for a program that I was working on.  My mom, she came downstairs, fully dressed and she was pissed.  She looked at me and yelled, "I'm pissed off.... what am I some asshole?"

Confusion was surely the look I gave my mom, I had no idea what had happened.  It made no sense.  I got off the phone with my colleague and went to see what was wrong with my mom. 

I found her sitting in the sunroom with a frown on her face.  She was cross.  I went up and asked her, "Ma, what's wrong?"

"No one told me that I was crazy.... why didn't you tell me?  I've been dead for 2 years.... what happened to the other house?  How did I get here?  I have to go to the other house." My mom rambled in a panic.  It was as though she woke up from a 2 year nap, nothing looked familiar.  She was mad. 

Just as she predicted the night before as she was frantically going through her purse, "I'm going to be pissed."  Well, she was pissed alright. I couldn't stop laughing.  It was pretty funny.

The day went on and my mom calmed down. 

I took her blood pressure and blood sugar.  I observed that when her blood pressure and blood sugar are elevated, she is more nuts than usual. 

On Sunday she was at my sister's house and her blood sugar was much higher than it's been at 129.  I found that my mom, when her blood sugar goes over 125, she hallucinates or has behavior issues.

I made my mom a cup of tea and had her sit down with the hypnosis recording.  She listened to the recording for 30 minutes.  When she woke up she appeared better, not so agitated.  She asked me questions all day about her hallucinations.

"Susie, there's a lady in my closet.  She has a cone head.  She's only about a foot tall.  She was messing with my stuff so I nicely said to her in this voice (my mom's voice went up a few octaves), "Oh, you're going to have to go now." 

"Did she leave?"  I said to her, hoping to get her to tell me more.

"No, she didn't leave.  She didn't pay any attention to me."  My mom added.  Without skipping a breath she said, "Two and a Half Men, they were just here.  They came to visit me!"  My mom was thrilled that Charlie Sheen and Jon Cryer were visiting my mom and she was psyched. 

Sporting a huge school girl smile, my mom believed she really had Charlie Sheen and Jon Cryer in her room.  I didn't even want to ask what they were doing with her, I didn't want the answer.  But, my mom she didn't stop, she continued on. "... Oh, they are always having sex with someone.  Today Charlie has a new girlfriend...." 

I had to stop her and I said, "Well, aren't you the lucky lady?  Those 2 are really good looking men." 

My mom, beaming from ear to ear said to me, "Oh I know!  Isn't it nice that they thought enough to visit me?  I really like those 2."

I gave my mom some Helleborus Niger to stop the hallucinations.  My mom, she was apprehensive to take the pellets, she was really enjoying her visit with the men from TV.  But, she took them because she figured they had a date.

This morning, my mom is much better.  Well, she was 15 minutes ago.

She told me that my dad was with her all night.  She told me that he cleaned the house for me, that he did the dishes and made the bed.  He cleaned the bathroom and vacuumed, then he climbed in bed with my mom.  She was so happy to see my dad. 

"Susie, Daddy is so good looking.  He is a handsome man.  I had to go to the bathroom so I got up.  Unfortunately, when I got back, Daddy left.  I didn't want him to leave.  He'll be back though, he has been with me a lot lately."  She said to me as a matter of fact.

Another observation that I have made is when my mom eats her dinner, everything on her plate; the following day is always better.

Today, it's a great day because my mom, she didn't declare herself pissed off!

A Visit from Ed

In our house last night, no one woke up in the middle of the night, no one, not even my mom.  Nothing like being able to sleep through the night without interuption; this morning I woke up awake and refreshed. 

Today is a GREAT Day!

Sleep absolutely helps my mom's mental state.  If she sleeps at night, the following day is always a great day for her and everyone around her. 

I was up before my mom this morning.  I put on the coffee, fed the hungry kittens and turned on the news to get the weather report.  It will be a cold day with about an inch of snow predicted. 

Quietly I walked down the hall that leads to my mom's bedroom so that I could check on her.  I still have this deep rooted fear from when I was a kid where I need to check to see if she's alive.  She was.  I turned up the heat in her room and went back to our sitting room to have a few minutes of quiet time.  I love the early morning when everyone is asleep except for the cats and me. 

Early morning is a sacred time.

The sound of the furnace heating the house, the creeks in the walls and the ticking clocks, is the morning song that soothes me.  Early morning brings peace to my soul.  Today is a GREAT day because I had a few minutes to fill my soul with the sacred sounds of my home. 

Peace.

My mom, she woke up but she didn't leave her room right away.  I looked down the hall and saw her feet, she was up and sitting in one of the chairs in her room.  I went in and greeted her.

"Good morning Ma.  How did you sleep?"  I said to her.

My mom with wild looking eyes, she wasn't quite awake yet, started to whispher, "Shhhh, be very quiet, Eddie... he's here, he's sleeping.  I only have one bed so I gave it to him." 

I wanted her to continue, I know she loves talking about my dead brother.  "Oh, well isn't that nice that Ed is visiting you.  Is he scaring you?"

"Oh no.  He sits in the chair right there and smiles at me all day long.  He never talks, just smiles." she said with a softness in her face that told me that the visits she is experiencing from Ed are making her happy.

Out of nowhere she says, "I think Eddie had a date last night, he came in late.  I gave him my bed."

My mom, began to wake up but not before she had a chance to tell me about my dear brother Ed and his visits.  She believes he's here because he leaves an indentation in the back of the leather chair.  Not wanting to shatter her belief, I went along with it and told her to enjoy Ed's visits, that he is here to protect her and keep her company. 

My mom said, "Oh, I talk to him all the time, but he just smiles." my mom said as she gave her best impression of Ed's smile.  She nailed the expression, maybe Ed really is here, helping me from the other side?

Thanks Ed, you are still a wicked good brother even if you did die way too young. 

The Man is Under my Covers

Just when I thought we were doing so well with keeping the hallucinations away, my mom asks the question, "So tell me, what can I do about the man under my covers? Can you give me something to get rid of him?"

Not words that I wanted to hear.

We're down to just one hallucination, just one man, "the man", the spook that scares the snot out of her.

"It's not a whole man" she tells me this morning. "... He's sort of transparent from the waste up. He doesn't have legs anymore. It's strange. I don't know how to explain it."

I ask my mom, "So, when was the last time you saw him?"

"Hmmmmm?" She replies as she looks up to the ceiling as if the answer is written there for her to see.

"I don't know, it could be 2 days. I'm not sure. But I need to explain it to you. Listen."

So, I listened to my mom explain to me how this man is invisible to everyone but her. He has been sneaking under her covers at night. He can get by me because he's invisible. He doesn't squeak the floors either because he can float.

I asked her if it is my dad. I know that last week she talked about him being in bed with her all night and for me to be quiet in the morning so that I didn't wake him. Now, it's not my dad. It's some strange man that wears a big black brimmed hat.

Is she seeing an apparition? Is it Lewy? Has she put a nasty image to go along with Lewy? I'm beginning to think that naming her illness wasn't such a good idea.

She believes this hallucination is there, that it's real. She tells me it's one of those people from the house next door, the ones that look over the fence at her sometimes.

I've never seen anyone looking over the fence, ever.

My mom, she does patrol the yard visually from the safety of our home. She walks around, looking through windows that will give her a clear view of the fence. She'll either tell me that she sees people or that there's no one there.

Lately, during the day, especially since she started to take Ashwagandha in the morning too, she hasn't hallucinated during the day. She hasn't seen any "people" looking at her over the fence. If she does, that's when I give her 4 pellets of Helleborus Niger 30 C. I haven't given her any in several days.

Now what do I do?

I believe she's dreaming when she thinks the man is in bed with her, the dark transparent man with the big brimmed hat.

In the past she would have actually woken up and walked to find someone to show the man to... that someone has typically been me. I don't hear her get up and walk around.

Thank God for those squeaky floor boards.

The absence of her night time sleep walking is leading me to believe that by naming her disease and referring to it as Lewy, my mom's subconscious has given a shape to the offending cause of her illness...

Who is "The Man", the only hallucination she seems to be having, could it be her subconscious perception of "Lewy?"

Today I will explain this to her. She loves it when I give her an explaination for what ails her, it makes her feel more comfortable. Who knows if I'm right or wrong, I do know that the end result is always the same, she's relaxed.

She trusts me. She believes that I'm going to help find a cure for what ails her. When we do, it sure will be cause to celebrate. If we are not able to, then my mom will go to the grave believing that we did.

Could the final remedy for the cure be LOVE?