Rough Daze

The last few days have been a bit of a challenge.  My mom, she was back to her crazy self, hallucinating about people with no heads and people in the trees, people that she claims are angels. 

My dead brother Ed, the electrician, he has been here a lot.  According to my mom, he's doing some wiring so that he can sit in the chair and read by angel light.  My mom gets excited when she sees him and when she tells me about seeing Ed, my God, she gets genuinely excited. 

"I smiled at him like this (she showed me a big smile) and I waved to him, I waved and he waved back!... Susie, Eddie is always here." She exclaimed 2 days ago.

The 15 year old boy who whistles was back too.  She couldn't remember his name, she talked to me as though I knew this boy... "What's his name?"  She said to me, "Come on, you know it... what's his name?"

We had visits from the children, the mischievous children that used to run rampant around my house... that is in my mom's mind these kids were here, stealing her things.  I was back to looking for things that she hid on herself. 

Through all of this, my hands still ache from poor ergonomics when using my computer.  I had to hold back from writing... sorry to anyone who reads my blog regularly. 

We did have some rough times, but I got through them with my mom. 

The other day when she was out with my sister, she bought some gluten free cookies.  I didn't know that my mom was eating them until I spied the open box and lots of cookies missing.  No wonder my mom was behaving crazy, the cookies she ate seemed to bring on the weird behavior, behavior that she'd display anytime she would eat baked goods with Baking Powder or Baking Soda.

I sat with my mom most of the day yesterday.  She frowned at me more than once, looking at me strangely like I was someone else.  My mom was aggitated.  She was upset that we couldn't go out because of the rain and the floods.

My mom, we got her back on track.  I had her take a Vinpocetine 5mg capsule and she took a nap for an hour.  When she woke up, I gave her a cup of coffee and a couple of pieces of dark chocolate.  Her eyes were back to normal, they were not wide and wild, scanning for visions as she had been since Sunday.

A little while later, I gave her one 250mg of Carnitine and 100mg of R-lipoic acid... my mom was back.  She was laughing and talking, smiling at me and hugging me.  Oh... I love it when my mom is here.

For dinner we had a recipe out of Dr. Tirman's cookbook, one that used corriander and curcumin, ginger, pepper and a little white wine.  My mom, she ate the entire meal, her appetite was good, an indicator that she's more present in the now.  An observation, when my mom gives me trouble about food, she's usually in a demented state of mind.

Mom, she's still sleeping... today will be a GREAT day, even if all the streets are flooded.

Is My Mom Finding Her Mind with R-α–lipoic acid and acetyl-L-carnitine?

The combination of  R-α–lipoic acid and acetyl-L-carnitine appears to be helping my mom's cognition.  She had been taking these two mitochondrial antioxidant/nutrients, they are listed in Cognifactor; Acetyl -L-Carnitine - 400mg and R-a-lipoic acid - 5mg.

I wrote a comment on a blog somewhere out on the internet.  It was a comment that related to my experiences with my mom.  Someone left a comment to my comment.  She told me about these 2 mitochondrial antioxidant/nutrients and how her dad has been taking it; it is reversing his alzheimer's.  I couldn't believe my eyes.  I needed to check this out for myself, just as a lot of you that read my blog will probably do too.  I researched and discovered that the 2 mitochondrial antioxidant/nutrients when taken together at a 2:1 ratio, with a nutritious diet, can reverse dementia. 

There are no side effects.  Perfect. 

The ratio of the 2 mitochondrial antioxidant/nutrients, based on what researchers have discovered with the affects on the brain is 500 mg of Acetyl-L-Carnitine to 200 mg of R-a-lipoic acid, twice a day.

I know that with my mom's condition of Lewy Bodies Dementia, less is more.  Start slow is the moto these days. 

I told my mom about RLA and ALC combination that is known to benefit diabetics and folks with Parkinsons Disease, a symptom of Lewy Bodies Dementia. 

RLA has a bunch of benefits for diabetics.  It's known to reverse neuropathy, a condition that my mom has suffered because of her serious diabetes that she had for so many decades.  It is also used to keep normal blood sugars in check. 

OBSERVATION:  Over the years, I've noticed most diabetics that I know who don't keep their sugar levels under control, are demented in their thinking.

Once I told my mom about what I had learned about these two antioxidant/nutrients, she wanted to get some immediately and give it a try.  Off we went to Whole Foods where we found 100mg capsules of RLA to add to her Cognifactor supplement that has 400mg of ALC per dose.

The next morning, my mom took one 100mg capsule to compliment the 400mg of carnitine that she's been taking in Cognifactor for the last 8 months.  Immediately we noticed improvement.  It's been one week and she's doing super.  We had one bad day, which could have been avoided if I was in a better state of mind, one where I could navigate us to a more happy place.  We live and learn on our journey, it's sort of like being a new parent, old folks don't come with instruction manuals either!

For more information about RLA and ALC, you can read this article that I had found intriguing. 

Combined R-α–lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease

My mom, she is doing super.  She's clearer than she's been.  Could these two antioxidant/nutrients be reversing her condition?  Mitochondrial Antioxidant/Nutrients RLA and ALC - Does it work to help folks with Lewy Bodies Dementia?

Is my mom find her mind?

Good Days Begin With Me, the Care Giver

Our good night and day stretch has come to an end; I am to blame. 

It was a long stretch of good nights and days, which I'm grateful.  It has been easier to be my mom's care giver, she's not as nuts since she began taking  an additional 100mg of R-Lopoic Acid.  She doesn't hallucinate, not like she had been. 

Diet, Supplements, exercise and a peaceful environment appear to be the key to our good days.

I think my mom's trouble with hallucinations has been her cataract in her eye, she can't see very well and when she sees stones or some other inanimate object outside, her mind makes it into something like wild horses or an elephant.  She still doesn't want to have the cataract removed, so I won't force her.  I think she enjoys the visions.

Most of the trouble that we had yesterday was created by my reaction to being woken up when I felt as though I had finally fallen asleep.  My hands were numb with pain, too much computer work in a non-ergonomic desk set up, the pain has been keeping me awake at night.  The kittens have finally discovered the outside and at 4am they decided it was time for me to wake up and open the cat window.  I banished the kittens from my room. 

My mom forgot about the squeaky floor and walked across the squeaky floor boards above my bed with her heavy shoes on her feet.  It's a sound that is the most disturbing of all sounds, even more shattering than barking dogs.  It woke me.  I was not in a good mood.

6:30am and my mom was ready to go somewhere.  "I don't have a car!" She exclaimed as I came up the stairs in a foul mood. 

"Ma, where are you going?" I said in a tone that was rather sharp.  The beginning of the end of our good day stretch.  I was not in the mood to chase her around the neighborhood on such a cold morning.

Our morning spiraled downward and fast.  10 days of my mom with no time off had me in a bad place, I needed to get away from the insanity of my mom's demented mind.  All that I had learned about my attitude affecting my mom was out the window.  My hands hurt.  I couldn't do anything but sit still.  Preparing food hurt.  I had no patience. 

Fortunately, my sister took my mom for the day.  I drover her to her house and left her off.  My mom, she was mad.  She told me that she wasn't coming back.  She told me that she was glad that I would have a bad day.

My day off was OK, it wasn't great.  It's my own fault.  All I needed to do was keep my mouth shut for 2 hours.  But, I didn't.  I'm not perfect.

The day ended well, after lots of craziness and a 3 Mai Tai lunch followed by a 2 hour nap.  My mom came home.  She realizes that she either lives here or moves to a nursing home.  I made her favorite, oven fried chicken, asparagus and peas with carrots.  She had a little soy ice cream and even did a little dance while I scooped it into a dish for her.   My mom, she was happy to be home.  She had a great day with my sister and slept all through the night. 

She woke up this morning and had a little breakfast with her supplements.  She was still tired so she went back to lay down.  When she wakes, we'll go out and restock our cat food and get a few groceries to get us through the next 3 days of heavy rain that will surely flood the roads between here and the stores.

Today... it's a great day and the beginning of a new stretch of good days.  What I've learned with Lewy Bodies Dementia, it's not just about taking a bunch of supplements or pills and eating the right foods, good days for Lewy Bodies patients also need Care Givers who are rested.  When the Care Giver is worn out, it's way harder to control emotions.  I've learned more than ever that the state of my mom's mental condition, it begins with me, the Care Giver.

I'm grateful for my sister Donna and all the time she gives me.  I love my sister for her gift of herself to my mom and me.  Donna is my lifeline to sanity, Thanks Don... you help in ways that I can't explain in words.

More Good Days

Day upon day... all good days.  Amazing is not even a word that's good enough to describe my mom's condition, she appears to be improving.

Now, I know that everyone tells me that there's no cure, that there's no hope for my mom, that she will only decline.  Lots of folks believe that I'm wasting my time, others believe that I'm setting myself up for a big let down because Alzheimer's, what my mom was diagnosed, has no cure.

I do have a dream that my mom lives another 20 healthy years.  I visualize my mom healthy, happy and driving her car again.  I see her going to the supermarket with a list of items to buy so that I can make dinner.   I see myself as a Sales Engineer again, on the road, travelling here and there, making money while my mom stays home and holds down the forte.  I have a dream that we will have more good days that turn in to every day is a good day.

If my readers have not noticed, I do not give up when I believe in something strongly.  I believe that the body can heal itself, I believe that my mom is healing.  She's lost almost 100 pounds since we moved and she'd lost her mind.  Her diabetes is cured, never do we worry about spikes and drops in blood sugar that made her feel very sick for so many years.  It was a rollercoaster battle that was slowly killing my mother.

Gradually my mom is improving. 

Diet change works, infact it's key.  Doctors do start out telling folks to lose weight and exercise.  Where most doctors fall flat is that they don't tell patients how to live a healthy lifestyle; instead we are all asked to "try this new pill" or worse we go in to the doctor expecting to ask for a certain pill that we believe will "fix us."  Fortunately there are doctors out there like Dr. La Puma, Chef MD and Dr. Tirman.  Their cookbooks are instructional and have helped me to help myself and my family.  We are all healthier and it's freaking awesome.

This morning I showed my mom video that I had taken over the course of the last 2 years, she didn't recognize herself, she was so heavy.  She even looked like she was having trouble breathing... I never noticed it until today when I watched the video of my mom singing with Uncle Al in my living room.  Her breathing appeared labored.

Supplements are helping my mom in conjunction with natural and healthy food.  Today, my mom is having another good day.  I believe in miracles and to me, every good day that my mom has is a miracle.  I have hope.  I believe we are taking my mom out of the Lewy Bodies grip. 

More good days... DEFINITELY!

Monkey In the Bananas

We've been having great days lately, lots of them and all of them in a row. We've fine tuned my mom's supplements and diet to the point where she's pretty normal every day. 

I have extra time with my mom... she's coming back!  Could this be?

I remember thoughts not long ago wishing that my demented mother would return, just long enough so that I could enjoy her.  It's true, you miss the little things in a person when the person is gone.  I visualized it and believed that it was possible.  Next thing I knew... Josie returned.

It's as though the Universe has granted my "wish";  I have extra time to share my life with my mother.  A dream come true. 

So... with this extra time, where do I take her?  Shopping of course, her favorite pasttime.

Today, while we were shopping in Whole Foods, my mom asked what I needed. I gave her a few items on my list and off she went with the cart to gather grapes, blueberries, asparagus and bananas. She didn't need my list. She remembered everything using her own memory! I was pretty impressed.  Remembering the items didn't thrill me as much as today, the toy stuffed Monkey in the banana display didn't become a real boy!

Just a few weeks before my mom became convinced that the stuffed monkey in the banana display at Whole Foods was real, that the monkey was a living being, a mischievous boy. 

She often would talk to the monkey, "Get down from there... oh! oh! ... you are going to get hurt.  Susie, get him down!" 

For weeks I did everything I could to keep my mom out of the banana aisle at Whole Foods.  The Monkey freaked her out and any people that happened to be in the aisle with her.

More than once over the course of several months, my mom had dragged me to look at the monkey and said, "See, See Susie, it blinked at me. It's making faces! It's so funny… Someone better get that little boy out of there, he's going to get into mischief."

On and on she would carry on, crafting quite a story around the monkey in the bananas.

Hallucinations and Dairy Link in LBD Patient

I checked my mom's blood sugar when she began hallucinating last night.  Her reading was 100, well under 125 blood glucose that when crossed brings on hallucinations in my 80 year old mom with Lewy Bodies Dementia.  She's a recovering diabetic.

The only thing that she did yesterday was have half and half, a dairy product, in her coffee around 3pm.  Dairy seems to be the culprit to her night disturbances and hallucinations.  It seems to bring on hallucinations during the day.  Anytime she has coffee with dairy, I can be sure that I will be looking for the man or the lady in her room.

Today my mom hasn't hallucinated at all.  She had lactose free milk with her oatmeal; this doesn't seem to give her a problem.

My mom, I'm having her make Golumpkies today, she is excited to kick me out of the kitchen.

Pressure Cooker Gluten Free Pasta Fagioli

Yesterday, I made Pasta Fagioli; Pasta and Beans.  Dr. La Puma had sent out his version of the recipe, which was my intention to duplicate in my kitchen. 

But, for some reason I just had to change it up the first time through, mostly because I was able to pick fresh oregano leaves from my herb garden.  I wanted to use fresh herbs that I picked fresh only moments before chopping.  Something about using fresh herbs from my garden makes me super excited. 

Spring is HERE!

Here's Dr. La Puma's version.

Here's mine.

Pressure Cooker Pasta e Fagioli (Pasta and Bean) Soup


Ingredients:

1 teaspoon olive oil

2 carrots, thinly sliced on an angle

6 garlic cloves, minced

One-quarter teaspoon crushed red pepper flakes

4 cups low-salt vegetable or chicken broth

½ cup (2 ounces) uncooked gluten free pasta (brown rice pasta)
1 can (14.5 ounces) seasoned diced tomatoes, undrained (such as Muir Glen brand)

1 can (15 to 16 ounces) kidney beans or red beans, rinsed and drained

½ cup fresh snap peas washed and cut in half

1/2 cup chopped fresh basil
1/2 cup  flat-leaf parsley
1/2 cup fresh oregano

¼ cup grated Romano or Asiago cheese



Preparation:

Heat a sauce pan sized pressure cooker with the lid off, over medium heat. Add olive oil and carrots; cook 2 minutes. Stir in garlic and red pepper flakes; cook 1 minute. Add broth and pasta; bring to a boil over high heat.  Stir in tomatoes and beans; Stir in snap peas;

Cook on medium high -  pressure cook for 10 minutes.  Let the pressure cooker hiss for 10 minutes and then shut off the gas. Ladle into shallow bowls; top with cheese.

Observation: Blood Sugar Levels and Hallucinations in LBD

I've been observing my mom's hallucinations, the ones that she has that make us all believe that she's got LBD.... Lewy Bodies Dementia.  Of course we won't know definitively if she does have Lewy Bodies until after she passes and we have her brain autopsied.   She does have all the symptoms of LBD, hallucinations of people and animals being the calling card.

Yesterday, my mom saw elephants and horses in the yard.  "Look Susie, there's an elephant!"  She'd exclaim out of the blue.  Not long after her claiming to see an elephant, she'd tell me about horses, wild horses in the yard, beautiful horses that she believed were really there.  When I couldn't see them, she'd point to her left eye and wink as she said, "Well, you can't see them because you don't have a Magic Eye."

My mom gets cranky if she doesn't have some kind of bread.  I found that gluten free bread that is purchased in the store keeps her happy, but it does bring on hallucinations.  Granted, the hallucinations are not scary to her but she is having them, so I began to think of reasons why she's hallucinating.

Any type of rice product will cause hallucinations in my mom.  The amount of carbohydrates listed on the package is a good gauge as to how much she hallucinates and for how long. 

Typically, my mom's morning fasting glucose has been in the 80's, which is very good for someone who used to think 160 was a good blood glucose reading.  So many times she'd have blood glucose readings that were in the 200's and 300's!  It used to freak me out when I'd see such high numbers and I didn't know what to do to bring the numbers down.

My mom's been having gluten free bread the last couple of days and her fasting blood glucose this morning was 114, not a good reading for my mom. 

She's not hallucinating this morning.  I discovered long ago that she only begins to hallucinate when her blood sugar goes above 125. 

I also have observed that when my mom's blood glucose readings are higher than usual, if I give her more dark green vegetables with several meals, limit rice products to zero, her hallucinations disapate, she's more awake and engaging in conversation.

I believe that a drug free way to manage hallucinations in Lewy Body Dementia patients is to manage blood glucose, keep it low... I use Fenugree Extract drops when my mom's blood sugar is high.  One drop lowers my mom's blood sugar 15 points.  It chases the hallucinations away and she is more alive and happy.  My mom, she'll always say, "Oh, I feel human again. "

The issue with my mom feeling human is that she believes she can eat how she used to eat.  She feels normal ... she believes she's cured and can go back to her old eating habits.  For my mom the hardest thing for her is to change her thinking about food, she always loved bread and pasta... she still does. 

Through my observations, I believe that when blood sugar is high, hallucinations are more prevalent in Lewy Bodies Dementia patients.

Sunny Days, Hallucinations and The Dream Master

Sunny 70 degree days... we had one yesterday.  It was awesome. 

We all worked out in the yard together, even both moms.  My mom couldn't wait to sweep.  She waited patiently for me to finish raking my flower bed next to our new patio so she could sweep.  My mother in law, she came out too and picked up pine cones.  Lots and lots of pine cones.

I was into my gardening task; I didn't think of the camera until I was already outside with muddy feet.  Maybe next time, maybe this is going to have to be one of those times that I use my imagination and remember the day.

My mom's days have been very clear since she has taken 100 mg capsules of R-Lopoic Acid.  She had been taking 5 mg, the amount in Cognifactor.  Cognifactor is a great supplement.  RLA has helped my mom to feel "human."  My mom feels that she's improving when she takes the RLA.  I see the improvement, I have been able to converse with her, have real conversations like I did before she lost her mind.

But, my mom's improved cognition isn't just because of the supplements, it's also closely related to her diet.  I pay attention to her behaviors after she eats, it helps me to know what she can and can't eat.  Fat is added to the list, primarily dairy fat since we don't eat any other kind of fat. 

Both our Naturopath Doctor and Dr. LaPuma recommended my mom cut out dairy.  Dr. La Puma suggested that it could be causing my mom's night disturbances.  We cut it out for 2 weeks and saw an improvement.  When I gave her a little ice cream after having 2 weeks off dairy, my mom was up sleep walking and didn't know where she was... she wanted to go home; even though she was already home.

My mom loves ice cream so I began to buy her lactose free ice cream and milk.  She loves the taste and she doesn't appear to have night disturbances when she eats it. 

Yesterday, I made pan fried fish.  I cut up some haddock into 3 inch pieces, added a little salt and pepper and coated the fish in soy flour.  I put 2 tablespoons of olive oil in my cast iron pan, heated it until the oil shimmered and then I cooked the fish for about 3 minutes on each side until the batter was golden.

I made steamed asparagus and steamed fresh peas.  My mistake came when I made tartar sauce using Trader Joe relish and some mayonnaise.  My mom loved it with her fish.  She ate all the tartar sauce. 

Shortly after ingesting it, she began to hallucinate more than she has been.  She was whisphering for me to come over to her so she could tell me about the people taking pictures of her with the zoom lens... "I must be beautiful if they are taking my pictures... hehehe"  she said to me.  Fortunately, the hallucinations are friendly.

At bed time, my mom was in full blown hallucination mode.  Whishpering, "Susie, come here... the people, the people are in the room.  They stole my necklace that Donna gave me."

I thought I'd try the Dream Master...

"That's it!  I'm calling the Dream Master.  I am paying extra good deeds and you are having hallucinations worse than ever.  This stinks!"  I exclaimed as I picked up the phone in my mom's room that's not plugged into the wall.  I dialed the customary 11 numbers.

My mom in a panic said as she was throwing the covers off her, "No don't.  I'm leaving.  Don't call.  It was a misunderstanding."

I hung up the phone and she stayed in bed.

I then looked out into the air on the otherside of the room, where she said the people were... "Look all you people, get the hell out of here.  I am so sick of you bothering my mother.  Now SCOOT.  There's the door.  Get out ... get out... GET OUT!"

That seemed to work.  My mom settled down and went to sleep.

She woke around 3am to use the bathroom, she did a little walk around the house and went back to sleep; as of this writing of this post, she is still sleeping.

Today... I Hope It Lasts Forever

Today, my mom is even better than she has been over the last week.  She even has a doctor's appointment today and she slept through the night!  This only happens when she visits her favorite doctor, our Naturopath Doctor.

Today, my mom is different, different in a very good way.  She is clearer than I've seen her since the days when we lived together in the house that I bought for us.  My mom appears to be normal, I mean, VERY NORMAL.  She's had clear days but nothing like the day she is having today.

Could it be?  Could we have found the right supplement, diet and exercise routines mixed with meditation to get ahead of the amoloyid beta plaques forming? 

Could this just be a wicked good day? 

Do LBD patients go from not being able to speak to being clearer than I can remember?

This morning I set my mom's hair and while she had breakfast she told me that she used to wake up feeling dizzy, but not anymore.  She is feeling great today.  She told me how she woke up at 7am and did her little walk around the house.  She told me that she feels human and alive.  She knows what's going on, she knows who we all are.  More importantly, she knows that this is where she lives.

Today, even if it's just an anomoly, I'm excited to have my mom back.  I can't help fantasizing that this is my mom's new mental state of being. 

Today... it's pretty darn amazing.  I hope this day lasts for ever.

Kismet... What FUN!

St. Patrick's Day 2010 will be a birthday for Brian to remember because it was definitely different. 

I attempted to plan a day of fun but the only thing I could do was plan to have someone stay with my mom.  Early in the morning, I dropped my mom off at my sister's house where my youngest nephew was  "Granny Sittimg" for the day. 

Kismet is the only word I can use to describe the events of the day... there were so many, too many to post.  Letting the Universe guide us, we had a great time with lots of laughs. 

My mom bought Brian a birthday cake and was excited to sing Happy Birthday to him. 

Once dinner was over, I found a box of candles, I set the cake on fire and we sang.  Brian opened his cards. 

My mom's card, it played music... it wouldn't stop... we laughed and laughed.


One of the sweet moments of the day was during Brian's little birthday party, I was taking pictures.  My mom, she reached her arm around Rachel and they posed for a picture. 

I asked for a 2nd picture to be sure I got it... our mom's laughed at the right time. 

Brian and I now have a great photo of our moms together, smiling big... a reminder for years to come of the great day we had on Brian's 52nd birthday.

Happy Birthday Brian!

Today is not only St. Patrick's Day, it's also the love of my life's birthday! 

My mom, she's spending the day with her grandson Scott and my sister Donna.  This morning I'll take my mom to my sister's house and she'll play poker... or better yet, watch Scott play poker online.  She LOVES watching his hand and recommending what she thinks he should do.  When she does... Scott wins and it's a big thrill for both of them. 

My mom, she's all dressed and ready to go. 

Brian is getting to sleep in... sleep is his favorite pasttime.  I'll come home and we'll go out for pizza, his favorite food and then we'll go to the driving range on this awesome day and hit buckets of golf balls. 

I had hoped to get us out on a golf course, one with long par 4 and 5's on them so that we could walk and walk ... soaking up the sounds of nature and the glow of the green fairways.  Spending time together, away from everything; golf courses are a slice of heaven to us because no one can find us. 

But... we had way too much rain over the last several days and everything is flooded.  Walking around on a soggy golf course doesn't sound like a fun time.

But all of this doesn't matter, what matters is we have an incredible day weatherwise, my mom is spending the day with my sister and nephew and I get to spend quality time with my best friend in the entire world... my husband on the most special day of the year (besides my birthday of course.) 

Happy Birthday Sweetie... I love hanging out with Birthday people because they have Birthday Magic action and something great always happens.

Today IS A GREAT DAY!

Two Influences

I've often heard that how your kids see you treat your mother is how they will treat you. Kids learn from their parents or other adults in their young lives.

My mother, she didn't visit her mom, she didn't teach me about extended family ... my Aunt Jay, the care giver to my Polish Grammy, she taught me how to be a Care Giver, she taught me about the importance of an extended family.

Two things that I've experienced in my life that have kept my mom out of a nursing home.  First, visiting a mental institution to visit my grandmother and second was seeing how Jay took care of my Baci.

We visited our mom's mom when I was 8, she was institutionalized. It's where I saw what a mental institution looked like and it scared me. Everything was painted battleship gray and the TV hung from the ceiling with a piece of chainlink fence in front of the glass tube.

The TV flickered images and people sat in chairs, gazing into the air, no expressions, no laughter. Every so often someone would fling a hard object at the TV, which helped my young mind understand why they had the section of fence stretched across the glass tube, safe from any projectiles that could send a shower of glass over anyone unlucky enough to be in the direct line of fire.

The day I met my grandmother for the first time, I also saw the scariness of a mental institution. I remember walking by a room that had a metal door with rivets with bars covering a little window. I didn't look inside, I couldn't, we were rushed along and the window was too high. The place scared the shit out of me.

My mom never knew her mom, she was institutionalized when my mom was just 14. I'm sure my mom was scared, being left alone at such a young age; having your mom taken away and locked up in an insane asylum.

Shock treatments. Drugs. Abuse. All realities that my grandmother and my Aunt Flo faced every day of their lives. They were alone. My grandmother had no idea that she had 5 grandchildren, all children of her youngest child, my mom.  That was also the day that my grandmother didn't know who my mom was, she didn't recognize her and it hurt my mom's feelings.  I saw it on her face.

Life was hard for my mother, she worried about the crazy gene. She met my dad, they married and they had a hard life together. My dad was uneducated and my mom had no mother role model, they winged it. My parents did everything they could for us, they made sacrafices so that we could have a better life than they had; this appears to be a common theme among parents.

My Aunt Jay, she helped my family a lot; because of what Jay has done for me personally she holds a special place in my heart. I want Jay to live with me, she deserves to have me as her Care Giver ... another story for another time.

The two influences in my life that have made me a Care Giver is visiting a mental institution and having Jay teach me how to take care of the people I love.

Don't Worry, I Called the Dream Master

After today's mis-adventures with my mom in the torential rain, I knew that I needed to assure her that everything was great. 

Her day was fine, after she had a nap for a few hours.  I let her sleep for 3 hours after she walked a mile up the hill, in the torrential rain, carrying her kleenex box, with trash trucks picking up trash.  Yes, my mom has one of those tales to tell and it's true.

Tonight when I tucked her in she was in good spirits.  I said to her, "Oh, by the way, don't worry, I called the Dream Master today.  I told him to cut you a break and cancelled your dreams.  I asked how many points I needed. 

My mom looked at me and said, "Oh, can I pay him?  How much does it cost?"

I said, "Oh no Ma, it's not money that we pay with, it's good deed points.  You know how easy that is for me (my mom shook her head in agreement.)  I promise the Dream Master that I'll do extra good deeds so that you have many good nights sleep in a row.   It's sort of like Karma but for dreams.  I have this special way to reach the Dream Master.  I can call from any phone.  Even phones that have no dial tone, I can use.  See your phone right there?  I use that one for emergencies, when we need to cancel one immediately."

My mom, wide eyed and excited says, "Oh, well that is really great.  Thank you dear, good night.  What time are you waking up tomorrow.  Come and wake me, OK.  I'll wake up with you.  Sleep good.  I'm going to sleep good.  I love you."

"Good night Ma, Sleep with God.  You will have awesome dreams about dad and Ed and your brother Auggie and your mom and sister...your father."

"Oh!  He'll probably hit me!"  she said to me half laughing about her dad who used to chase Uncle Al all over the place so that he could beat him (that's Uncle Al's view of him.)

"Hit you?  What for?  He's going to hold you and hug you and love you... kiss you and spoil you, just like he did when he was alive.  You know how he spoiled you, you were his baby."  I said to my mom, matter of factly, exactly as she told me this story time and time again all my years growing up.

With a little laugh and a cute little smile, my mom says, "You're probably right.  He did spoil me, I was his favorite, he bought me really nice dolls, big dolls."

As I shut off the ligths in her room I said, "Good night Ma, sleep well, sleep with God and I'll see you in the morning."

"Good night dear... can you leave the hall light on?" She asked in a voice that reminded me of the days when I was afrraid of the dark and what lurked in the shaddows. 

"Sure Ma.  I'll leave it on.  Good night.  I'll see you in the morning, it will be a great day!"  I said as I walked from her room and to my room to retreat for the evening.  Ahhhhhh, peace at last.  Thank God for the Dream Master and magic phones.

My Mom is My Mini-Me

The dreaded curse, the one that a mother will strategically place into your subconscious, so that you make it happen through your unconcious actions.  I thought I was safe by not having kids, I thought I had dodged the bullet.  I'msure I remember my mom wishing a kid like me, as an offspring more than once.

I cried.  I cried a lot.  I mostly cried around my family.  No different than now, back then I had no idea why I was crying, now I do. I suppose I always felt like they were making fun of me.  I do remember my feelings being hurt easily. 

My childhood was hard, mostly because I had to fight with my emotions.  I was given an extra bucket of emotions when I was born.  My mom, she has dealt with them my entire life.  Looking back on her life, she was blessed with lots of emotion too, only it's been supressed until now.

My mom didn't sleep well last night.  She was up early and dressed.  I felt like I was finally getting to sleep, I was exhausted.  She squeaked the floor.  I saw her dressed.  Frustated, not fully awake and in a state of mind where I can not hold my tongue,  I ask her in a stern voice what she was doing. 

My sternness, it hurt her feelings. 

I inherited my sensitivity from my mom.  She is extremely sensitive and now with Lewy Bodies Dementia, she's even more sensitive than ever.  It's like... living with a mini-me who is 80 and holds the upper hand by blurting out during a lucid moment .... "Susie, I'm still your mother!"

My mom, she interpreted my tone as telling her that I don't want her here.  She reacted.  She shut down.  She sat an pouted.  I know that I can't leave a pout alone, it's like a scab that's about to fall off, you just have to pick it off.

So, I picked it until my mom started to cry.  She told me that she doesn't like it when I yell at her.  I didn't yell, but she heard it as a yell.  She told me how she tries so hard to do the right things.  I assured her that she does.  I explained to her how I'm exhausted and we both need a break from each other.  She didn't hear this as a temporary break, she immediately assumed that I meant "nursing home."  She freaked.

Next thing I knew she had her winter wool coat on, a fresh box of Kleenex tissues, unopened, under her arm and her little leather purse.  She was out of here.  That's what she said to me... "I'm leaving.  Don't worry about me, I'm outta here!"  she exclaimed as she stormed out.

Here we go again.

My mom ran away from home this morning.  I couldn't stop her.  It was raining (still is) in sheets of water.  Dressed with a coat that was NOT water proof, mesh covered sneakers - totally not water proof and a new box of kleenex under her arm, she was leaving... she was calling a cab. 

We live tucked away, off the beaten path, definitely not a community where we can walk to stores.  My elderly mom, was mad.  I didn't know what to do.  I let her walk for 10 minutes before I went looking for her.  I drove around for 50 minutes looking for her.  I was freaking out.  I was crying and praying.  I was asking my dad to help me.

I drove to the supermarket parking lot.  It's about 2 miles away.  I thought I saw a woman in the checkout line through the window, someone who looked like my mother.  I parked my truck and went inside. .  Nope, not my mother.

I drove up and down the streets in my neighborhood.  I couldn't find her.  Streets are flooded around here with swollen ponds and rivers.  Where did she go?  Then I thought I'd drive up this big steep hill.  A hill that I doubted she'd climb.  I drove up the street, looking for her, with eyes of a hawk.  The rain came down heavier and heavier.  The wind was blowing and all I could think is my mother is out in the damn rain soaking wet, scared and lost.   I had to find her!!

I changed my Hail Mary prayer jingle to , "Hail Mary Full of Grace, Help me find my mother!"

At the top of the hill, I FOUND HER! I saw my mother.  She was standing in the rain, soaking wet, looking as though she was waiting for a bus on the corner.  Her Kleenex box still unopened was still tucked under her arm,  The box was becoming soggy. 

I motioned to her to come to the truck.  She did, apprehensively.  She recognized me and I saw a sigh of relief on her face.  I jumped out and put a dry coat on her and handed her a towel to dry off her face and hands.  I had the heat up extra high to warm her.

We drove home in silence.

On the silent drive home I had a flash back to my childhood...1965, I ran away because I was being teased, my feelings were hurt.  I sang the worm song that my mom taught me as I cried myself to sleep in my hiding place .... "I'll eat some worms and then I'll die... and then you'll all be sorry that you picked on me."  I remember chanting this as I walked up and down my street crying because someone teased me.

I scared the shit out of my mother that warm summer day in 1965.  I remember  later hearing that she sent my older siblings out looking for me.  They were calling me and calling.... I never answered.  My mom, she came home after hours of searching with no luck.  I don't remember who found me.  I was home, under the bed, sleeping.  I sang my worm song and cried myself to sleep.

Today, I got to experience the scare that I gave my mom back when I was 5 years old.  Driving around the neighborhood, I rehearesed in my head the conversation I'd have with my sister Donna, "Hi Don, I lost Ma."  ... "Hi Don.  Ma ran away... don't know where she is... don't know what to do."  Over and over, I heard the call until I willed it to stop.  I was determined to find her.  I did.

Home, safe and sound, I made her a cup of coffee and sat and talked to her.  I explained to her how we both need a break from eachother and that I am exhausted, physically and mentally.  It's been nearly 2 years that we've been living this way with little time off for the Care Giver, me.  I told her how it's beginning to feel like a life sentence in prison with no time off for any reason whatsoever. 

I explained how I asked my siblings for help, but no one feels they can do it, which is why I began looking at respite care facilities.  Really nice places where she'd feel like she was on vacation too.

I told her that I want her to live with us.  I love caring for her when I'm rested.  I expressed this the best that I could, using lots of hugs and smiles.  I reminded her about all the successes we've had when everyone thought she was a gonner.  I reminded her of the good and how fortunate she is to have Donna and me.

I did have her in agreement about us both needing a break.   Heck, it's the reason she ran away today, she needed to get away from me.  I'll continue to work for my mom's and my cause, a cause to have a break away from each other. 

I am sure she'll run away again, it's what she does, it's what she did as a little girl when her brother teased her, she'd run away and hide.

My mom is my mini-me... now this should make it much easier, right? 

Think Wisely

Life after death.  How do we know there is a life after death?  What if the mind creates this belief  as a safety, a precaution to help us preserve our life?  What if this is all there is, that there's nothing else, that we have only one life... this one and it's up to us to make the most of it now... not eons from now when we possibly could reincarnate as someone else.

Our mind creates illusions. 

No one really wants to die, saving our life is a hardwired survival instinct.  We all have it and our survival mode will kick in when necessary, as adrenalin pumps through our veins, we find the strength to save ourselves or those that we love, like our children.

I believe that the reason people have children is because they want a part of them to live on, they are creating an image of themselves.  It's the love of self that is the driving force behind people having children. 

Love is what makes the world go round. 

Love of self, love of your mini-you's... mold our lives.  There's nothing wrong with loving yourself, as long as you don't do it in public.  I believe you could get arrested for that act. 

We are conceived, we live, we die.  We don't really know if there's anything more, all we can do is have faith in a religion that tells us what happens to us or we imagine it based on things we've read and learned for ourselves along the way. 

We can use our imaginations and dream of past live, what it was like, what we did, what caused us to have our phobias in this life time...  that is if there is such a thing as past lives.

Do we create our own past lives to help explain away our odd behaviors in the NOW?

Today I was pondering the thought of mind, which I believe the mind does have the power to create and manifest; all of our beliefs are confirmed by our mind.  The secret of life is in the mind.

But... does the mind also hold the power to create who we were and who we will become now and forever ... until the beginning and end of time?

Thoughts from the heart of the mind create our realities.  Think wisely.

My Good Eye

Ever since last Saturday, when my mom saw my dad at the "healing on the hill" next to the Supermarket parking lot, my mom has told me that my dad healed her bad eye so that she could see the otherside and all the folks who have died. 

All week, she would tell me about the people looking over the fence or climbing the trees... "See them Susie?" 

Often she becomes upset when I tell her that I can't see what she is seeing.  It upset her to the point where it appears to build up and cause her night disturbances.

Now, since she told me how my dad healed her eye so that she can see everything that goes on where the dead go, I now can say... "Oh, you must be seeing the other side with your good eye."

Mom will now cover her left eye, her bad eye that my dad healed, looking with her right eye she'll often say, "Ohhhhh ya, you are right.  Isn't that something.  Now if I cover my other eye... (she covers her other eye with her hand)... see... I can see it!  Dad healed my eye so that I could see him through my new good eye, I can see dead people."

Ma's Golumpkie Recipe

Yesterday, my mom made Golumpkies, otherwise known as Stuffed Cabbage.

She's been aching to cook her "real" food as she likes to call it.  My mom was never really a very good cook.  She could make a really good pasta sauce and meatballs, lasgana... anything with pasta and cheese, my mom made well.  No wonder we were all fat.

Like a mother hen, I watched over my mom.  I couldn't stand in the kitchen when she chopped the onions, after all, my demented mom was using a sharp knife, one that I had just sharpened. 

I sat in my office, working as I heard my mom chop, chop, chopping in the kitchen.  She was singing her "La Di Da" type song, one that always reminds me of Curly on the Three Stoogers.  Curly always sang the La Di Da song when he cooked, just like my mom. 

Here's how my mom made her Golumpkies, not how I remembered but they came out very good.  Ok, so I threw in a little ground thyme when my mom wasn't looking, it needed it.

Ma's Golumpkies

1 lb ground white turkey meat (she would normally use ground pork)
1 lb ground dark turkey meat
1 Savoy Cabbage Head
4 eggs
1 medium onion diced
2 large cans of diced or whole peeled tomatoes
reserved water from the cabbage pot
Salt
Pepper
3/4 cup uncooked Black rice (normally, she'd use Minute Rice but we don't eat that kind of rice anymore.)
1 1/2 cups cold filtered water

Cook the black rice.  Put the rice and the water into a pan that has a lid that fits.  Allow the water to boil with the rice for about 10 minutes.  Shut off the heat and allow the rice to continue to steam cook in the pan.  Do NOT open the lid to check on the rice for atleast 30 minutes.

Let the rice cool.  You can put it in the fridge if you need it to cool down more quickly.

Put the head of cabbage into a pan of water, cover the pan and boil the cabbage in order to soften the leaves.  If you cut out the core of the cabbage, it will be easier to peel the leaves off when the cabbage is cooked.   When the cabbage is cooked, the leaves will be firm and soft, take the cabbage out of the water and peel the leaves off the head of cabbage.  Lay the leaves flat on a plat to cool.  Reserve the water that the cabbage was cooked in.

In a large mixing bowl, add the turkey, onion, eggs, salt and pepper.  Mix well.  Add the cooled rice and mix in the rice evenly.

Roll up about 1/2 cup of meat mixture into the end of the cabbage and roll it like an egg roll.  Make little cabbage packages. 

Place the cabbage rolls in the bottom of a big pot.  Layer the rolls gently so that they are easy to scoop out with out falling apart.

Put in the 2 cans of tomatoes.  Use the reserved water from the cabbage pot to add enough liquid to cover the cabbage rolls.

If cooking in a pressure cooker:  Cook on medium pressure for 10 minutes.  When the pot starts to hiss, let it hiss for 10 minutes and then let it depressurize naturally.  Don't speed up the cool down.

Place the rolls into a crock pot if you want them cooking slowly all afternoon and ready for dinner. 

When I had a job outside the home, I would put the raw cabbage rolls into a crockpot, adding all the liquid.  I'd cook it on low all day.  When I'd get home from work, the cabbage rolls would be ready.

My mom's cabbage rolls were very good.  I was suprised.  Ok, so I did sprinkle about a teaspoon of ground thyme over the crockpot when I transfered the pressure cooker contents to the crockpot. 

My mom, she was so pleased with herself.  I was too... today, I'll have her make chicken soup.

Yesterday, my mom used the pressure cooker to cook them initially and then I put them into a crockpot so that the cabbage rolls cooked slowly all afternoon.

Ma Cooks

Ma is having a good day and she wanted to cook. 

She made Golumpkies - stuffed cabbage. 

She sang.  She laughed.  I laughed.  She used the wrong words and made us both laugh.

I tried one, it is not bad, not enough seasoning but that's how my mom likes things... bland.

Here's the video blog of Ma cooking - it's pretty cute.

Work Brings Peace

This week, everything is gradually improving... it's better than it has been for my mom and me.  She had some hallucinations where my dad was the star of her day; the hallucinations didn't scare her so I didn't give her Helleborus Niger, a homeopathic remedy that works to chase away scary hallucinations.

I've been thinking, why is she better able to handle being by herself during the day for long stretches of time?  Why does she appear like she did when we lived in my house in Groveland? 

My mom doesn't seem to have a problem with entertaining herself when she knows I'm working.  This got me thinking and observing behaviors. 

For the first 10 years that my mom lived with me, I worked from home.  I travelled a lot but when I was not travelling, my office was in the house and it had the busy sounds of an office.

My mom, she loved to listen to me work.  Often if I was on a conference call with my team she'd stand in the kitchen doing dishes, listening to the sounds of my work wafting down the stairs; the sounds comforted her. 

The clicking of the keyboard, the ringing phone, the laughter and conversation about work related things, things that my mom had no idea what the topic being discussed is about... all of these little things made my mom feel comfortable.

Working is not only helping me, it's helping my mom too.   Since I've been putting in full days behind my keyboard, working a real job, my mom is calm.  Mentally she's clearer than she had been.  She laughs at TV.  She hasn't laughed at TV in awhile, she obviously wasn't able to keep up with the jokes.  However, it's different this week, she is happy, she is laughing, she is carrying conversations. 

Could she have been worried about my being unemployed? 

I had been unemployed for 22 months, nearly 2 years.  My unemployment situation is what kicked off the 2 year ride that brought us immediately on to the dementia freeway.  Looking back, it was intense.  I did some things wrong but did most stuff right.  I learned from my mistakes.  2 years later, we are all better off.  Even my mom with LBD is better than she could have been if she kept ingesting the food she was eating. 

Nutritious food absolutely helped my mom.  I believe that if we didn't change her diet, there's no way I could handle caring for her at home.  Processed foods, gluten, sugar... all the stuff that is filler in our food these days, brought on wild and scary hallucinations.  Hallucinations that only appeared to her at night when I needed to sleep.

It sure does feel good getting to sleep at night. 

Work brings peace...

Today IS  a GREAT Day!