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 October 2009

White Bean, Vegetables and Herbs on Red Boston Lettuce

2 Cans White Beans (kidney or Canelli) you can use fresh beans, make sure you cook them so that they are soft.
1 medium shallot chopped finely
2 Tablespoons olive oil, plus olive oil for drizzling over the finished dish
Juice of 1 lemon
1 teaspoon fresh grated lemon peel or 1/2 teaspoon of lemon zest (dried in a bottle)
2 tablespoons fresh flat parsley, chopped fine
1 teaspoon fresh chopped thyme
6 cloves of garlic, chopped fine
1 teaspoon fresh oregano chopped fine (or 1/4 tsp dry oregano)
Fresh ground Himalayan Salt to taste
Fresh ground green peppercorns to taste
1 celery stalk chopped fine
1 carrot, peeled and chopped
Fresh grated parmesean cheese
Heat 2 tablespoons of olive oil (extra virgin) in a large skillet or stir fry pan. When the oil shimmers, add in the garlic. Stir it around a little. Add in the celery, shallots and carrot. Stir it around. Put in the chopped herbs. Add the lemon juice and lemon zest (or grated fresh peel). Stir it and tossing to coat everything and blend the herbs and vegetables.
Add the beans and toss and stir. Heat the beans thoroughly. You want the beans soft.
Take a Red Boston Leaf of lettuce (or Romaine) and put the beans on the lettuce. Drizzle with a little olive oil. Grate fresh Parmesean over the beans and eat immediately. The red lettuce is fabulous to eat too.

Ashwagandha... is it a cure for symptoms of LBD?

Ashwagandha on FoodistaAshwagandha is my new best friend with helping my mom overcome the frightening symptoms of Lewy Bodies Dementia.

When our lives turned upside down about a year and a half ago, my mom had signs of dementia with hallucinations. A big warning flag that my mom has Lewy Bodies in her brain.

I've been learning about Lewy and what causes it. It can be caused by eating a bad diet full of fatty foods and processed garbage. My mom, she was one for "quick" meals, let's get it on the table fast type meals. I don't know if it's because when we got hungry back then, we had to eat something fast. Even with her diabetic years, her blood sugars would spike and drop. Bread always helped the angst brought on by low blood sugar. What I've learned through my mom over the last few months since Lewy has come on strong, diet is important. It's never too late to change ones eating habits. The key is you need to want to change.

Lewy Bodies are also triggered by blows to the head. Even just one big bang to your head can bring it on. Many boxers have Lewy Bodies because of the hits to their head while fighting in competition matches.

Seniors are not very stable on their feet. Especially those with Parkinsonism, like my mom and others with Lewy Bodies. They have a tendency to fall down and bang their heads, bringing the symptoms front and center into every one's life.

Since poor nutrition can bring on Lewy Bodies Dementia, my thought is that maybe a good diet can chase it away.

I've reviewed in my minds eye all the foods my mom prepared while we were growing up. Lots of pasta. Tomatoes, eggplant, peppers and potatoes. We didn't eat fresh vegetables. I didn't know vegetables came in anything but cans for the longest time. Never did she use herbs or spices in her food prep. Well, maybe Oregano and Basil, salt and pepper.

Now, I don't give her any foods that she prepared for her family. She's not happy about it but she does know that the new way of eating is restoring her health and possibly a renewed life.

I gave her 8 drops of Ashwagandha this morning in her blue shot glass, doctors orders. He told us that it will give her more strength and energy.

It's been about an hour since she had her first morning dose of Ashwagandha. She is alert and laughing at Jay Leno. She is able to sit through the entire show and even commented, "Boy, I never realized how long this show is."

My mom's concentration was much worse. The Ashwagandha is helping... is it a cure for LBD?

30 October 2009

Good Visit with the Naturopath Doctor

My mom has Lewy Bodies Dementia, she's 80.

The illness causes her to have ups and downs. Good days and bad. It's a quick decline sort of disease.

I've been reading about what LBD patients are prescribed and how some folks have bad reactions to the drugs.

We see a Naturopath Doctor who prescribes natural remedies that help my mom with cognition and hallucinations. Everything is working great. No side effects.

I make sure that she gets a good nutritious diet. She eats like a queen and believes that she is living in heaven sometimes.

She loves the ND. He always makes her feel good. He prescribed Phosphatidyl Choline powder which I'll give her 1 tablespoon every morning in a smoothie or something. It's tasteless. It should help her with cognition.

I'm excited for my mom. She appears to be getting better. She does the Wii Fit balance board game every day and walking on the treadmill. all with out coaxing.

Stay tuned for the continuing story of my mom and my journey down dementia highway with Lewy.

A Great Sleep for Ma

My mom slept through the night. She was ready for bed at 8pm, she forced herself to stay awake until 9pm.

8 drops of Ashwagandha. No dairy with it or Fenugreek and it was lights out for her until 7:30 this morning. Yay!

Her complexion looks good today. No puffiness in her face.

Today we see the Naturopath Doctor. I can't wait. I sent him some information that I had found on the web, a paper that a Medical Librarian had written about Lewy Bodies, Parkinsons and Narcolepsy. It's giving him a few ideas on how to help my mom even more.

Here's the paper that Heidi Lindborg, a Medical Librarian had written about Parkinsons, Narcolepsy and Lewy Bodies.,+MLIS&cd=4&hl=en&ct=clnk&gl=us

29 October 2009

An Average Day with my Mom

Today wasn't a great day for my mom, nor was it a bad day. We landed somewhere in the middle.

She sort of knew who I was but had trouble understanding why the Sue impostor uses the same name. How do I explain that?

I told her that I'm Sue, Susie, Susan... all the same person who does it all for her. That's when she says, "Wow! You mean, YOU ARE SUSAN? My Susan?" Yup, that's me.

My mom was amazed at how "smart" one of her kids is, she does understand on some level what I've been able to help her to accomplish with her health. It isn't easy, but screw it, anything worthwhile is worth doing right.

I don't know if I'm making a mistake, making suggestions that we can heal her Lewy Bodies, but I figured, what have we got to lose? I do believe that the power of the human mind and body can overcome shit that no one thought possible. I'm one for being a pioneer in this field and finding a solution to a problem that rips apart lives.

Lewy Bodies Dementia sucks.

Of all the Alzheimer's type dementia's, I'd say LBD is the best one, if you can call it "best." It doesn't make the patient prolong their lives. Aricept and the other pharma drugs can prolong life for the family, but what the hell is that doing for the patient?

If a person doesn't have a quality of life, what's the freakin point of waking up in the morning?

I can see my mom's point. But, I feel that she's got some life in her. She has a fairly new pace maker, it would be a shame not to have it get used. Tonight I said to her, "Ma, but you have a new pacemaker, you are healthier than you've been in years, come on, we can beat this thing. Are you with me?"

She smiled at me with strong belief in her eyes and said, "Yes, I'm with you!"

At least she has hope. She has a will to live. I tell her that it's possible that she's healed and able to drive again some day. It's all possible.

I call this "happy talk." Hope makes her want to keep on keeping on. Why not? She is finally organized. My entire life she told me about how she wanted to be organized. I helped her... she's organized now and loves it. She loves having a place for everything. NO wonder she thinks she's in heaven. Oh ya, she has her own toilet that someone else cleans, so she's definitely in heaven.

Living on the edge... NEVER A GOOD IDEA

I'm still not sure WHY I changed my mom's bedtime routine. Probably because she was in a normal state and assured me that "she felt really good" and didn't need Reiki or hypnosis.


4 times last night she woke up. The one night terror that I remember is she was telling me how 'they' had a burning cigarette and burned her. I kept telling her that there wasn't a cigarette in the house, no one smokes.

This morning, I saw the projection clock on the table in her room. She said to me, "Susie, that's it, that's the thing that turned into a cigarette and burned me. Honest to God. I was burned!"

She wasn't, no marks anywhere on her body. She still believes it was real.

Here Ma, take 4 of these pellets and put them under your tongue.

Today we go to the dentist for our quarterly cleaning. I've found that having her teeth cleaned 4 times a year helps her blood sugar stay in better control. Brushing her teeth is also important, she brushes every day.

Nothing worse than the bad breath of a senior who doesn't see a dentist regularly.

So, what I've learned is living on the edge and changing routines with someone who has LBD, just because they tell you that they are "doin good", DON'T DO IT!

28 October 2009

Living on the Edge

With the help of our friendly homeopathic remedy, Helleborus Niger 30 C my mom is as close to normal as she's been in several years.


No people lurking in the shadows. My dead father isn't laying with her, flaky skin and all. My dead brother isn't sitting watching Tv with her. She doesn't believe she died and is in heaven with bathrooms everywhere.

My mom is back.

Our usual night is I turn her tv to a "ting a ling" music channel. Then, I give her Reiki and hypnosis. Based on her day, I come up with positive phrases that will keep her happy and asleep. Hypnosis works. Reiki works. She loves Reiki. She laughs when I give her hypnosis, she thinks it's funny. I don't care if she laughs, it still works.

Tonight, I'm living on the edge. I gave her 8 drops of Ashwagandha in her blue shot glass, shut off all the lights, hugged her and kissed her good night. She called me her best girl friend, I told her she was mine... lovey dovey... you are my BFF. Good night.

I set the timer on her TV and left her with an hour of ABC sitcoms. I told her to walk over the squeaky part of the dining room floor if she had trouble sleeping and I'd come and give her Reiki and Hypnosis. So far, so good.

Laughing is always good for her.


With LBD, I know the patient needs meds adjusted as they go along. I'm finding the same could be true with holistic treatments... only give them when needed.

Homeopathic and natural remedies make it easy because there are no side effects. NONE.

If my mom is hallucinating during the day, I give her 4 helleborus niger 30 c strength every 2 hours as needed. When she stops seeing things, I stop giving her the pellets.

She looks out the window, out into the back yard and checks to see if she sees people peering over the fence as she usually did. If the people are gone, we know she's set with the Helleborus.

If the room walls start to change... 4 more pellets under the tongue.

Today she only needed 12 pellets. Each day she needs less and less. In the past, the longest that she has gone is 7 days with out any hallucinations and no helleborus pellets, it's possible to get her there with this homeopathic remedy.

Reiki and hypnosis are a new addition. They are helping a lot. She is more agreeable and less agitated.

She loves Sue the impostor... how do I become that impostor?

Rise and Shine

All night I half slept, waiting to hear my mom's foot steps walking down the hall. First the squeaky floor board next to her bed and then the pitter patter of her 80 year old feet.

Silence. The silence was deafening, keeping me awake, no squeaky floor boards, no ticking clocks, just darkness and silence.

Alone with my thoughts, wondering how everything will work out. What will become of my family after Ma goes? I miss my family. I miss being able to call them and talk to them about my mom. Talk to them about what I'm learning about Lewy Bodies. Hey, at least I have this blog that they can read. The purpose of it is to document everything so that my family and I have the information if we ever need it.

My mom woke up today! Contrary to her adamant belief that she was going to die last night.
In her mind, she woke in her home in Lynn, where she raised her family so many years ago. My dad was in bed with her. He was still sleeping. I needed to be quiet. She told me that he is dead, but he is still in bed with her. She told me that his skin is flaky because he's been dead for a long time. She doesn't care that he has flaky skin.

The best line she had for me today was when she said, "Wow, there are so many bathrooms. Is this heaven?"

She proceeded to tell me that today is the same as yesterday and tomorrow will be the same as today. She already saw today's news yesterday and yesterday's news tomorrow. It's her own sort of "Ground Hog Day" happening over and over again in the world that resides in her mind.

4 Helleborus pellets under her tongue, sent dad back to where his spirit resides, deep in the heart of my mom's heart. Ed, he is gone too. She knows where she is and realizes that having her own bathroom is definitely a slice of heaven on Earth.

27 October 2009

A Lewy Flair-Up

Today my mom was scheduled for an MRI so that the Neurologist could see what could be going on in my mom's head.

She was worried about the MRI. She hated the one that she had in 2002 because she didn't have music with her and the technician didn't offer her any music until it was over. Poor mom, she was left with a bad vibe which really caused her a Lewy Flair Up today.

Yesterday, after Fios was installed (took all day) I rushed my mom to Walmart so that she could buy a CD player. Her old one had batteries explode in them; I tossed it months ago.

Instead of a CD player which is outdated technology, I planned on buying her a new Sony ipod version 8 gb device. It holds a lot of music and it's tiny. Exactly what she needed to get her through the MRI.

My little mom, dressed in her purple coat, purple hat and purple shopping bag with all things important to her at the time she was putting on her coat, needed... not wanted... NEEDED a red Sony ipod device... especially after I explained to her that she could have a lot of CD's on one little device.

I loaded up all her favorites as soon as I got home. I had her test it out. She loves it. She listened to it all morning, anxious for the MRI to be over.

She didn't sleep much last night, worried, worried what would be found in her head.

She was so worried that she packed one of those reusable shopping bags with cloths. She thought she was going to be admitted to the hospital once they saw what was going on in her head. She can't believe what's going on in there and knows there's something definitely wrong.

I assured her that she wasn't going to stay overnight. Somehow she got pissed at me when I made her leave her 2002 xrays at home.

She pouted all the way to the hospital - miserable trip for both of us. I found myself using her words, "you know, you are the only one who suffers when you have an attitude like that." She replied... "I know."

I needed this like... God, I don't know - I just didn't want to be experiencing Lewy, not today, not ever!

It's difficult to stay calm and cool when Lewy comes around. Sometimes it almost feels like an abusive relationship, walking on eggshells, wondering when the shit was going to start to fly.

I've learned patience with my mom and Lewy. For this I suppose it's a good thing, a blessing if you want to go down the holy road of God and things happening for a reason. More and more, living with my mom and her insanity, I understand how WE are the creators, the GOD of our Universe. No 2 people think alike. No 2 people have the same thoughts. We are separate, but alike.

When Lewy visits, I hate it. I feel it coming on. I see an energy shift around my mom that I feel in the pit of my stomach. I want to throw up. I don't know how long it will last. I can only hope that I can keep her calm enough to suck on the helleborus "candies".

Today was no different. My mom was tired. She was hallucinating. The little girl was back. Dead cats were here - new additions to the hallucinations, but they were there in my mom's world.

Thank God for Helleborus Niger. Thank God for the Sue impostor that my mom likes better than me, she's a very skilled nurse, you know?

4 pellets at a time. Wait. Ask the question, "So Ma, how's things?" She knows that means, "Hey, are you hallucinating? Seeing any little people? Wild animals?"

She is honest and tells me. After 2 hours I ask the question and if she's still seeing things, she gets 4 more pellets under her tongue.

Today, she needed pellets 4 times, 16 in one day. That's more than she's needed in a long time.

She did say something pretty wild to me while driving to the hospital for her MRI. Out of the blue she unfolded her arms, looked at me and said, "I am going to die tonight. Do you think I should call someone?"

How do I respond? Who is she going to call? She asked my advice, asked if she should call my siblings and tell them that she's dying tonight. I advised her against it. I told her that she'll be waking up tomorrow to a GREAT DAY.

I hope she wakes up. I'll feel really badly if she croaks in the middle of the night and I stopped her from calling each of her kids. God, if she does die, I'm really sorry every one.

I do believe she will wake.

She was a collosal bitch all the way to the MRI check in. They make people walk a long mile, seemed like a nightmare scene, no wonder Jo was bitchy. She nearly made me bust out crying. She kept telling me that she was dying tonight. I ignored her. I had to or I would have gotten to the checkin counter with red swollen eyes, sobbing incoherently.

I walked ahead of her as I sucked in the tears. Forcing myself not to cry. I did cry about 3 tears, but I did stop. It was hard, but I did it.

I filled out the papers and circled and stared that my mom has a pacemaker.

Well. No MRI for you today Josephine, not now, not ever. Music to her ears. They rushed us out FAST, she was too close to the magnets.

On the drive home she said, "So, do you think I should notify my family?" I said, "notify us about what?" She said mater-of-factly, "I'm dying tonight. Don't you think I should tell them?"

Again, I said, "no, you will wake up tomorrow. you are doing great. besides, look at all the people you will help one day with this new method of treating people with LBD. You are no good to us dead."

We got home and she insisted on doing Wii Fit balance board. No coaching to get on it and work her mind. She loves the game where she moves her body to get the balls in the hole. She knows this game makes her feel good and helps with her memory.

She also walked on the treadmill until she was out of breath and didn't know how to shut the thing off, shit, she could have died if I wasn't in the room with her!

A few more helleborus pellets, dinner, hugs and happy talk - my mom was once again saying, "Oakey Doakey."

Oh, I love the phrase Oakey Doakey.

Tonight, I gave her Reiki. I called in all the archangels, Mother Mary and Babaji. I felt my hands vibrating. They were hot. My mom, she sucked up the energy. She gave a few jolts, her body jumping, but she settled down quickly as I felt Lewy leaving, he's gone for now. No more Quinoa, no more grains, they seem to contribute to flair ups.

Today I told her how I am using Reiki to dissolve the Lewy's. I believe in Reiki. I believe in the power within all of us to heal ourselves. I believe we are THE spark of God, we are one and yet so separate.

We can heal ourselves, we only need to believe in our power within.

26 October 2009

My Bookmarks - Withania Somnifera

Here are a few articles that I needed to store for future use. This is how I figured out that Ashwagandha works for my mom who I believe has LBD.

Withania Somnifera

Medicinal Plants and Alzheimers

Parkinson's, Don't become your disease

Neuroprotective Effects of Withonia Somnifera

Love your food and it will love you

I don't know about you but the toughest hurdle I've had to overcome with my healthy eating lifestyle change was figuring out how to shop for healthy food and then prepare it.

It is difficult. Everyone who's attempted to eat right and stay off pharmaceutical medications can feel an invisible force making sure we keep loading our bellies with the products that will ensure that we end up on the "prescription subscription plan" - psp.

Marketing Guru's work long and hard hours to craft messages that will make their way into the tiny hollows of our mind, a suggestion stored for later retrieval. Marketers have figured out how the mind works, it's not too difficult, people are predictable.

We all like the "E-Z" way to do everything, always rushing to save some time so that we can rush off to do some other meaningless task.

Zipping through the supermarket on the way home we are bombarded with colorful boxes and piped in music that has a way of lulling us into a shopping coma. We buy the poisons that are disguised as food.

Think about it, the people with the money always seem to win. As consumers we hold the power in our wallets, not the narcissistic businesses who are only interested in making money. Businesses want to sell us something, they want our money, they want to take away our power.

The foods that we are being fed, keep us in an unhealthy mental state. Our thinking is skewed. We feel like crap. We see doctors who prescribe a new pill. We lose more of our minds. Our bodies become weaker. We eat the "new and improved" boxes on the shelves of a supermarket and before we know it, we have completely lost our minds, we are obese, depressed and left wondering how we got to this point of poor health.

I'm not talking shit here, I'm talking from experience. Personal experience. When I was eating the boxed "foods" that were supposed to be good for me, my blood pressure was elevated, my blood sugars were getting high and all my cloths seemed to be shrinking at the same time.

I also found that the more processed foods that I ate, the more I hated the good foods, the whole foods like Arugula, romaine lettuce, spinach and beans. It left me wondering if my taste buds had been ruined and if they'd ever come back to their intended state.

The answer is yes, our tastebuds can be "reset" to like the real food, the healthful foods that give more time to do more tasks, meaningless or not.

My mom's illnesses were intense to watch her live through, often I was left feeling helpless. I hated feeling helpless. Even worse, I knew I was looking at myself 30 years in the future. I needed to do something! Could I help my mom restore her health too? That was my big burning question that has gotten us to where we are right now.

Deep in my core, I believe that the body can heal itself. It is this belief that gave me the mental strength to keep on searching for answers to help my mom and in the long term, my family and me.

My mom and I were obese. I can't believe I am actually acknowledging that I was very fat, 245 pounds fat. My mom too.

I did "try" lots of diets and eating, but I was always left feeling unsatisfied. Mostly because I never knew how to shop. I'd go to a store like Trader Joe's or Whole Foods and I wouldn't know what to buy. I'd see all this stuff on the shelves and wonder how to cook with it. I had no idea.

One can only eat so many steamed organic vegetables before you find yourself running for the nearest box of "organic" cookies.

Just because something says "organic" or "natural" doesn't mean it's good for you. You even need to read labels in Whole Foods and Trader Joe's.

So, what do you buy? How do we prepare nutritious foods that will keep us eating well and living healthy lives?

First, if you can grow your own food, do it. Buy from local farmers when you can. Avoid food with stickers that have numbers that begin with 3 and 4... stickers that begin with 9 are organic and your best choice.

Use herbs, fresh herbs. Chop, chop, chop. I find the art of cooking to be very therapeutic, chopping or pounding out chicken breasts helps to release tension. The aromas that come out of my kitchen and wharf into my mom's room also helps her to realize that she's home.

Thyme, basil, oregano, parsley, cilantro... all awesome tasting herbs. If a recipe calls for 1 teaspoon of a dried herb, use about 1 tablespoon finely chopped fresh.

Taking time to prepare food is rewarding in so many ways. For me, I'm dropping 1 pound a week, my mom has more and more good days, my mother in law is feeling better, my husband too.

We eat chocolate, ice cream and delicious fruit.

The only downside is when you begin eating REAL foods, nothing processed, nothing baked in the oven with baking soda or powder ... you won't be able to eat out as often.

Getting in the habit of cooking, learning the art of food preparation does require a mind shift. It takes a few weeks to build the habit, but once you do, you will begin to be excited for the next meal prep.

Now, meal time is a ritual for me. I think about life and sometimes I think about nothing. As a caregiver, preparing food is my meditation time. I put Reiki energy into the food I prepare for my family and I always put the most powerful ingredient in every meal, something that you can not buy in a box... LOVE.

Love your food and it will love you.

24 October 2009

Goodnight Josephine

My mom had a pretty good day. We went to Costco so that Brian could pick up a few things tha the likes to buy there. I like going because it's a good place to "walk the moms."

It was raining. Brian let us off at the door. Both seniors took a cart and said, "I'll see you around." I waited for Brian.

Brian comes through the door, I wave. Nope. Doesn't see me, he dashes toward the TV's. Not like we need another TV in this house.

Torn, I run toward Brian instead of after my mom, heading down the aisle by herself.

I'm not fascinated by TV's like Brian is so I tell him that I'm heading off to find my mom. Then it hits me... "oh no! I forgot to tell her not to eat anything! Shit!!!"

I find her, with 2 empty little white sample paper thingies. "Ma! What did you eat?"

Ma... "Gee, I don't know."

I had her walk me around until she could point out what it was that she ate. Of course, a coffee cake with cinnamon. I think she enjoyed it, not sure. She didn't remember it.

Walking down the aisle she says, "Well, can't you give me something to counteract whatever it is that I ate that I shouldn't have eaten?"

I said, "Sure... I have Helleborus. That will work."

I noticed her mouth twitching more after she ate the poison treat at Costco. As soon as she got her little dose of Helleborus, her mouth stopped twitching and she was steady.

We ate fish for dinner with fennel. It was 5 star restaurant quality, I'm still mmmm'ing in my mind from the thought of how awesome it tasted.

My mom is all tucked in. She's had her blast of Reiki. She told me how Susan does Reiki too but she's not as good as me (which is Susan - not going to argue, screw it.)

I suggested to her that we are dissolving her lewy bodies, that she has the power with in her to overcome all illness... that everything is possible.

Then my mom said, "Everything is possible when you believe, I believe."

Mom drifted off to sleep as my hands vibrated with intense healing energy. I felt her sucking it in as she moved deeper and deeper into a healing sleep.

Goodnight Ma.... Goodnight Josephine.

The Attitude of Belief

Whatever we believe to be true is true... period, end of story, it's the Attitude of Belief that matters most.

Through my training and study of hypnosis, I realized one thing, whatever the mind believes is true, is true. Once the mind forms an opinion and makes "sense" of something, there's not much that can be done to change the belief.

Sometimes, belief seems to be hardwired. My Aunt Jay is very Catholic with a strong belief in Jesus. She's told me once that she prays so hard that she sees Jesus' face before her, the tortured face of Christ, bloodied and in agony. Is she hallucinating?

The thing with Jay is that all her prayers are answered. She figured out the attitude of belief and how to transform her thoughts into her reality.

I learned along the way that the best way to manifest ANYTHING into your life is to hold the thought strongly, mix in a bit of emotion and a little enthusiasm. Visualize what you want, believe that it's yours. Before you know it, this thought becomes your reality.

It's a simple formula to create things out of nothing. It all begins with a thought. The amount of emotion and feeling put into the thought determines how fast it comes to you. Just like Jay's prayers, she prays with strong emotion and feeling. She's been doing it for years. Now, I know her secret.

Pray does work, but it's not because you are praying to a saint or other holy deity. It's because of you. You hold the power within you to create EVERYTHING in your life, both good and bad.

It starts with a thought which becomes a belief as you fixate on the idea.

The idea that I am fixated on these days is helping find a cure for what ails my mom and so many others with LBD.

People will say I'm nuts, that it's foolish, but I ignore these nasayers. I understand the power of belief and how to create something tangible out of nothing. I am doing the work, following my dream, it's my passion.

It's like writing this blog post. It started with an idea, a thought and now, it's something. I put my energy into it, I believed that I could write this and here it is... my article is nearly complete.

Yes, the writing of this blog post is a simplified version of what I believe to be a Universal Law, that thoughts are real and they need to be managed properly so that every day is a good day in your life.

23 October 2009

Bath Time is Fun Time

My mom loves her new bathroom. Especially the shower and bath tub.

Helping her with a bath is challenging.

I worry about her breaking something. We're holding off on baths until we can afford to buy her one of these devices.


Today on our way to Wal-Mart she looked at me and said, "Wow. I have 5 kids. I remember all there names." I said, "Great! What are their names?" She said, "Oh... mmmmm. give me a minute.... " I gave her a hint.

"Your oldest daughter has a name similar to your middle name."

She remembered, I could see the enthusiasm in her face as she gleefully called out her first borns name. She remembered. She continued on, her second born... Then she named me and my 2 brothers. She was so proud.

I then said, "Can you name your grand children?" She said, "Oh sure." She named off her great grandson first, she loves his little face. She loves how he danced on his first birthday, she never forgot it... I think that's pretty darn good. She remembered all the grand kids names without help.


Today we went to Wal-Mart and we bought her a bathtub seat like the one shown.

She LOVES it. She's showering now, loving every drop while seated on her new chair.

She's happy today. A little pensive.

Probably because my energy and mood is a bit skewed.

Definitely time to shake it off.

Like my dad often reminded me, "Susie, nothing lasts forever. Our world is in a constant state of change. What a minute, it will change. Tomorrow is a better day."

My dad was wicked smart.

Expectations of a Caregiver

There's no ball like family hard ball.

It's no secret, I'm my mom's caregiver. I enjoy caring for my mom. It's awesome when she remembers something, it makes her happy when she can remember. I am proud of what I've accomplished with her. She has way more good days than bad ones. I believe it's because of my deep love for family that I've been able to overcome each challenge.

It always wasn't this way. I was mad with my family for a long time. I was angry with everyone because I felt that no one cared about ME, not just my mom, NO ONE came to see me or talk to me.

I felt trapped and alone for years. I couldn't abandon my mom so that I could live my life. She was abandoned as a kid when her dad died and her mom was admitted to a mental institution. I couldn't leave her alone. I still can't. I won't.

Some like to call it guilt, I like to call it my responsibility. She cared for me when I was helpless, she deserves the same in return. If I can do it for her, which I can and do... then, I will. I believe this is the root of all my trouble with my siblings who are mad at me.

My mom, she doesn't want to die alone. This morning she asked me if I'd be there for her when she died, she doesn't want to go by herself, she knows that she doesn't have long. I promised her that I'd stay with her right to the end and pass her hand to my dad on the other side.

Am I selfish for wanting my family around?

Care giving comes with lots of expectations. I know that the expectations are what destroy family relationships. The hardest topic to discuss are the caregivers expectations because a lot of times, we are too damn tired to even think, let alone discuss our expectations to our rested family members.

I am no different from any caregiver, we all have expectations of our families. When the expectation isn't met, that's when everything breaks down. Communicating the expectations is my biggest challenge. I probably did it all wrong.

Accusations. Blame. Displaced anger. All of these negative energy holding blobs are not helpful, they hurt everyone. Personally, I'm crushed with the realization that no one really gives a shit about anyone except themselves. Maybe I'm guilty of it too, or I wouldn't be so hurt.

I swore I wouldn't go there. But I did. I spent weeks trying to compose yesterdays blog post so that I wouldn't offend anyone too much. It was stuff that had to be said. Not just for myself but for other caregivers who feel the frustrations brought on by the lack of help from family.

It becomes expected that the caregiver is doing it, that they don't need to do anything. Well, that's how it makes a lot of us caregivers feel, true or not. It is easy to get sucked in to self pity.

At times care giving can feel like a prison sentence with no time off at all, no nights, no weekends and absolutely no vacations. Without a good rest, we become worn down, cranky and say things that would be better off left unsaid. But... I've never been good at keeping my mouth shut. I try. Big mistake.

Yes, I do have balls! Don't test me.

One of my siblings read my post yesterday. She was angry. I felt it in her words. I knew the inevitable was to happen, an excuse for her to stay away. My fault. So, I made it so. I gave her an out. It was wrong of me to expect anything from her or anyone. I'm sorry if I hurt you. I will always love you.

Love is all we've got.

22 October 2009

The Blessings of Caregiving

I've become my mom's caregiver over time. I still don't know when it happened or why I was the one who "ended up" with Ma. In a sense it seems like it was a game of Russian Roulette, everyone taking turns holding the gun but afraid to pull the trigger. I wasn't afraid to pull the trigger, I bought a house 11 years ago and had her move in with me.

Caring for a terminally ill person is lonely. In the not too distant past, I would wait for help to come out of the goodness of someone's heart; help rarely came, even when I asked for help, little help arrived. When help did come, I was so tired that all I could do was sleep and dream about the golf game that I wanted to play. I cried a lot. What happened to my life? What happened to my career? How did I become the caregiver to my mom with LBD?

Another golf season has passed. I'm grateful to have played 18 holes this past year, better than zero, even if we played on March 18th with frozen ponds and snow still melting on the fairways. The day was heaven sent, it was a warm day with a bright blue sky, one where I got to spend the day with my husband, in silent meditation as we walked the long par 5, separate but together.

Closing my eyes, I can still feel the beauty of the moment, one that I treasure during those times when I feel like packing my mom up and sending her somewhere far away from me.

As a caregiver, I began to resent my siblings. No one seemed to care. No one offered help, just advice. I didn't need anymore advice, I needed physical help. I needed someone to show that they actually cared.

I cried. I felt abandoned. I felt like I was the only one standing in line and when I turned to my left or right for help, no one was there. The sting of abandonment sucks.

This wasn't working for me... it was making me sick. My expectations were out of wack.

I couldn't understand how my siblings didn't learn the same lesson that I had learned from my dad, that family is the most important aspect of life. That we needed to stick together because our family is our only true friend, family will always have love for each other.

I suppose I went into my mom's caregiving with this idea, that my siblings would help, that they'd come and sit with my mom so that I could have some time off. But, only one sister came and helped (she still does.) My brother told me to go "f" myself when I told him that I didn't want to hear him crying when she passed, because he has time now when she is alive. I expected him them to come. It was my unreasonable expectations causing me pain.

Maybe I was insensitive to my brother's mental state and too wrapped up in my own self interests, getting a break from my mom. Who knows what's going on in his life or why he is staying away from our mom? I have no right to judge him. All I can do is love him and hope that he's OK.

If you ever read this dear brother, we love you. Ma loves you and if you come and she doesn't remember you, just know that she does remember you on occassion and loves you very much. I hope you come on a day when she remembers who you are. The worst emotional pain that I've endured is having her not remember who I am, but I got through it and sometimes she seems to remember that I'm Susie and not Donna. She remembers my sister who lives far away, she never forgets her name.

Ma missed my brother a lot when she could remember things. Now, she's having trouble remembering that she even has a son. Maybe it's her way of dealing with the pain that he doesn't visit or call. I pray that one day soon, he'll come before it's too late. There's still a little time left.

My other sister lives far away. I did judge her. I was angry that she would yell at me to put Ma in a nursing home, telling me that I couldn't care for her. Offering advice over email or on the phone, never providing any physical help. Her email notes upset me and made me cry. It was up to me to call my sister so that my mom could talk to her. I got mad. My feelings were hurt. I felt used and abused. I stopped communicating with my sister because I believed that she didn't give 2 shits. However, it was because of this sister that I never gave up, that I kept searching for answers to help my mom continue to live with me until the day she dies.

It's because of my sisters and brother that I never gave up on my mom and still won't. I love them all more than ever now. I have no resentment or anger toward them, only love. I still believe that they learned the lesson from our dad, that family is the most important aspect of life.

I believe that one day, they'll come through, they'll show their unconditional love for their family. I believe that my family loves each other, that they are all just working through the pain of losing mom in their own way. Every one deals with things differently, I understand this totally.

Personally, I've come to terms with the inevitable, that my mom is dieing. She now thinks I'm hired help and wants to pay me for helping her in the tub. Our little mom is preparing for the end. My dad visits her every night, sleeping with her. Her dead brother and father visit too. My brother Ed who died in 2001, he visits. They all make her feel happy and safe.

Every night, when I'm putting her to sleep, I suggest to her that all her kids love her very much. I let her know that they are all safe and sound, happily living their lives. I name all of her kids, singing their names softly so that she will remember the happy times that she shared with all of them. She drifts off to sleep, smiling and saying something like, "Oh, she's nice" as I mention each of my sisters names. I mention my living brother and she always says, "I hope he's OK, he's a good boy, help your brother." I mention her great grandson and her face softens up as she says, "he's so smart and cute, when are we seeing him again?"

As my mom's caregiver, I had become very angry with my siblings. I judged them. I became miserable and sad. I grieved for the loss of my family. I cried a lot.

However, one day I read a post from another caregiver. She explained my feelings toward my brother and sisters. She also helped me to realize that everyone deals with things in life differently.

I love my sisters and brothers, nephews and nieces. I love you all and even though I say, "this is it, I'm never being a caregiver again for anyone", if any of you need me and I am able, I will take care of you.

Caregiving teaches a precious life lesson, one with so many benefits... it's like a gift that keeps on giving. The only way to understand this is to do it... sort of like chocolate. Caregiving is like chocolate, you can share it but you really can't describe the taste - it's pleasure and pain.

I am blessed being my mom's caregiver. I have learned a great deal. I've learned how to eat healthy. I love my family more than ever. I have more patience. I feel fortunate to have another day with my mom. Another day to strive for a good day for her.

Today is a GREAT day! I love my family and I know that they all love me.

20 October 2009

My Day of Respite

On Sunday, my sister Donna took my mom out for the day. The plan was to go to Bingo at the Catholic Church in Malden.

The day was crazy as far as weather is concerned, it snowed! October 18th and we had white flakes falling out of the sky and sticking to the grass. I never got my geraniums out of the ground. Oh well, is there still time? (yes, they all survived.)

When they arrived at the bingo hall there was NO BINGO. They had parked a distance away and walked up to the doors. A school aged boy greeted them. Donna asked about Bingo and the kid said, "no bingo today, it's open house for the school."

Donna and Ma trudged back to the car in the snow.

I had packed them a lunch using lettuce leaves in place of bread wraps. I tied the little bundles together with green onion. I even packed them some 70% cocoa chocolate bars for desert.

Donna took my mom to a Dunkin Donuts. They went through the drive thru and got a coffee. They sat in the front seat of Donna's pickup truck and ate the lunch that I had packed for them.

Next, Donna took Ma shopping for a hat. She came home with 2 hats, excited to have found a purple one to match her jacket.

My day began with a cheer as Donna and my mom drove off. Brian told me that he'd take me anywhere I wanted to go. My first choice was Mexican but it was snowing. I didn't want to travel that far on a crappy day. Instead, we went to our favorite Chinese Restaurant.

Rick the owner was happy to see us. His favorite line is, "Thank God for bad cooks." Then he laughs and tells me that he knows I'm a good cook.

We learned how to say thank you in Chinese and Goodbye.

After I had 3 Mai Tai's, I was thanking everyone and saying goodbye to everyone. Who knows if I was pronouncing them right, for all I know I could have been telling the wait staffers that they had hairy palms!

I was feeling good. I ate the hot pepper sauce. Oh, I love that hot pepper sauce. As I ate it, I knew it was a bad idea. I haven't been eating out at restaurants or doing take out. I've been making everything fresh and from scratch - the best. Tasty.

It must have been the Mai Tai's. I ate too much hot pepper sauce.

For the next 36 hours, I would suffer stomach pains that were so bad, I thought I needed an emergency room visit.

Last night sucked. I did my best to calm my mom before bed. I gave her Reiki and Hypnosis. The pain in my stomach was intense. It made it difficult to release all thoughts so that I could become a good conduit of healing energy for not only my mom, but me too.

I focused on my hands. I felt the heat. The tingling. The pain was in my fingers. The pain seemed to be draining it out of my mom. I forgot about my belly ache, my fingers were aching.

My mom was up 3 times last night. She had the Ashwagandha drops, 8 of them. I don't know why she got up but every time I walked her back to her bed. She thanked me for helping her to find it.

My day of respite was awesome, even if I did end up with gastrointestinal pains for about 36 hours from the food that I had eaten.

The buzz that I had from the drinks was welcomed. I didn't give my mom any thought, I knew she was with Donna. When we got home, I took a nap. It felt so good to sleep.

I was enjoying my nap when I heard the door open. It was Donna with my Mom. It was time to wake up. I tried to fake sleep, hoping that it was just a dream. But, Brian showed up before me as he said, "Sus-iiiieeee, Josie's home. Time to wake up."

19 October 2009

Reiki, Hypnosis and Dementia... does it work?

For as long as I can remember, I've been curious about the mind and why people do the things that they do. I often asked the question to myself, "why are some people wealthy and others not so wealthy?"

My family, we were blue collar, not financially wealthy at all. However, my siblings and I all went to a private Catholic school. Our Aunt Jay helped pay for our education, she felt it was very important that we learned how to be good Catholics.

The school we attended is where all the rich kids went. All the State Senator's kids. Some were really nice and others were snots toward the kids who were not as well off as their families. I've actually formed some of my political views early on in my life based on who was a shit head and who wasn't.

We lived near the public library. My sister Ann taught me how to write my name when I was 3 so that I could get a library card. It's my earliest memory, writing my very long name all around the little 3 x 5 index card that would go into a big antique file cabinet. It was an exciting day. I don't remember the librarian's name now, it's been a very long time, but I remember her face. I remember her dark curly hair and big smile when I was able to write my long last name. Ahhhh, a library card... Yay! Now I needed a purse.

I was about 8 when I checked out a book, "How the Brain Works." I didn't understand it, but I tried. I wanted to understand how the brain worked, I was passionate about the brain. I wanted answers. I wanted to understand life better and why some kids sucked and others were awesome.

Fortunately for my mom, my obsession with the brain led me down alternative paths.

Years ago I told my mom that I wanted to find a Reiki Master to teach me Reiki. I had no idea where to look for a good one, someone who was good at attunements, someone who believed in the power of Chi... internal life force energy.

My mom lived with me in a house that I had bought 11 years ago, long before I knew my husband. There was a Senior Center around the corner that she used to visit.

One day she went to the Senior Center. I worked from home at the time. She came home from the Center about an hour later all excited. She yelled up the stairs where my office was and said, "Susie, come down here. I have to tell you about this lady named Ricky."

I had no idea what she was talking about. I came downstairs and saw her face. It was bright. Her cheeks were rosy. She began to tell me about Ricky and how she made her 3rd Eye open up, that she saw a light a bright light that was beautiful. She felt relaxed, totally relaxed.

My mom handed me the woman's card. She was a Reiki Master. I called Celia and set up an appointment where I could have her give me a Reiki session, my first one ever.

Celia did attune me to Reiki Master status. It was like being a fish in a huge ocean. The world appeared vast, I needed more. I love Reiki energy, God energy, Universal Love Energy... it's all the same regardless of what people call it. All I know is that when I give Reiki I get Reiki - the energy is freakin amazing.

My mom loved it when I was in training. I gave her Reiki. She'd later tell me that she would feel more than my hands on her, healing her. The Universal Forces flowed through me and my mom sucked it up.

Never happy to not learn something new, or improve on an old idea, I was given an opportunity to learn Clinical Hypnotherapy by Dr. Donald Schnell.

So many years after my initial fascination with the brain, I was finally provided a new road to travel to search for the answer to my childhood question. How does the brain work?

Hypnosis is amazing. What I've learned is that the human mind is extremely suggestible. People are mesmerized every day, every minute. Folks who say, "oh, I can't be hypnotized." My reply, "oh ya? Suggestions are being thrown your way constantly."

Next time you are out buying something, especially a food item, ask yourself why you are buying it? It's really crap and not food at all. It's designed to make you enroll in the prescription subscription plan. When you pay attention, you can spot the manipulation on TV, the key is to be aware.

The news media can get masses of people believing what they say. Repetition and the methods of delivery easily manipulate the minds of people. People become sheep, where their master becomes the mighty TV. It's all an illusion, a narcissistic ploy to use people against themselves.

The subconscious mind is extremely powerful. It's our greatest tool to achieve everything, even those things that are deemed "impossible" can be achieved using the power of the mind.

Does a combination of Reiki, Hypnosis, Nutrition and Exercise help to alleviate the frustration and fright for people with Dementia?

I believe it does. I've only been using all 4 of these techniques with my mom for a few days. I do know that the one night I skipped her Reiki and Hypnosis session as she was drifting off to sleep, it was a rough night of hallucinations and sleep walking for her.

I'm learning that the human touch is very important for folks like my mom. She responds well. The suggestions that I make are comforting. I listen to what she says during the day. I listen for things that are bothering her. At night, I make suggestions to put her mind at ease, to take away the fear so that it doesn't cause her to freak in the middle of the night.

Today, I had a bright idea. I thought I'd have my mom take a nice warm bath with bath salts. I turned her bathroom into a mini-spa. She loved the soak in the tub. She smiled and told me that she could get used to it... that I was spoiling her.

Not sure we'll do a bath again anytime soon. Getting her out was tough. Especially with my mom laughing so hard that she didn't have the strength to grab onto the bars. She told me, "you better get help." I said, "no one here to help." That's when I lifted her out of the tub, with her laughing like a hyena.

18 October 2009

Now what do I do?

Donna has come and gone with my mom. Off to Bingo!

My sister has a poor sense of direction and where we live is tucked away, very difficult to find, let alone find the highway to take them to the bingo hall. I gave her my cellphone to take along because I have the navigation option with the phone that I've got. It used to come in handy when I was traveling in different states for my job.

I packed them a lunch. I cooked up a few slices of turkey bacon. I prepared the Romaine Lettuce leaf so that it would roll with out breaking. Inside the lettuce wrap I put a 1/2 slice of bacon, a few shaved pieces of fine Irish Cheddar Cheese, thinly sliced red onion, a little organic mayo and a few pieces of pea sprouts.

I put everything at the light colored end of the lettuce and rolled it up like I did when I make sandwiches with Lavash wraps.

To help keep it together in the little lunch baggies, I tied a piece of green onion around the center of the wrap to keep it from unrolling.

Also in the lunch I put 2 apples and a couple of pieces of 70% cocoa chocolate that I got at Trader Joe's for 2 bucks. It's amazing chocolate that's made with beet sugar. Mmmmmmm!

Brian took his mom out for the Sunday papers. For the first time ever, I have the house to my self. It's a strange feeling to be alone. I'm so accustomed to having to be somewhere in the house helping someone (usually my mom.) Ahhh... this is nice. Quiet. Peace.

Today, even though it's raining outside, it's a sunny day for me. I've got 5 hours before my mom comes back home. Brian is taking me anywhere that I want to go today.

Wow... a date with my husband! I don't even have to think about my mom, she's with Donna. Rachel, she's fine on her own. I'll set her up with a nice lunch before we leave for the afternoon.

Today is a GREAT day! I think we'll go to the Mexican Restaurant and have a couple of nachos with those Margaretta's!

The Little Girl

My mom has been hallucinating about a little girl for months. The little girl is mischievous and gets into her things. The little girl makes my mom mad.

Last night, my mom went to bed early. Probably too early, but none the less, she fell asleep at 7pm-ish.

Before I called it a day, I instructed the cat to make sure she comes to get me if my mom woke up. She always does, especially when I tell her.

I slept like a log.

I thought I heard a noise at 4am but I ignored it when I didn't see the cat show up at my bedroom door.

8:30am. I can't believe that I slept until 8:30am! No cat came to the door. Hmmm? That's odd.

I rush upstairs and find her bedroom door shut. No wonder the cat couldn't come and get me. Her little TV table was upside down on the floor against a wall, tissue box on another side of the room on the floor. Pillows and blankets spewn everywhere too.

My first reaction... 'F(*&!" !!!

Mom was in bed, she told me that she was freezing. I pulled up her covers and asked her if she still wanted to go to Bingo with Donna today. Her reply, "I have to go. I have to go to Bingo."

Last night I suggested to her that she's going to win. She usually does. I hope so... it will be just the happy time she needs to keep Lewy away for a few days.

I've been thinking of this little girl that she hallucinates about. Sometimes I wonder if one of my sisters or me is the little girl in her hallucinations?

17 October 2009

Goodnight Lewy

Thank God today is over.

It started out rough with my mom waking up and roaming around the house thinking someone stole her purse and shoes.

She has been known to hide them on herself when she's sleep walking. It took me awhile to figure out this little puzzle. I can't tell you how many times I've had to find her "stolen" items. Now that we've moved her bedroom, I have to learn all her new hiding places. Yay!

Brian was a bit cranky this morning. My mom was in her crazy state. I had to stay with my mom so that she wouldn't wake up my mother-in-law.

I don't know how it all happened but I did end up crying this morning and didn't stop until about an hour ago.

My mom had to go to the bank and get money because she's going to bingo tomorrow with Donna. I took her to the bank. Not the usual bank, I drove for 35 minutes. I found myself heading toward my house... my former house that I sold after I got laid off from my job in March 2008.

I cried. I cried and cried as I drove. My little mom sitting next to me in the front seat of my pickup truck. She had a death grip on her purse, her beloved purse that she's always had nightmares about it being lost or stolen. Sitting quietly. Saying nothing.

I had an entire conversation with myself in my head, telling myself that my crying was only aggravating Lewy, the crazy gene. I knew I had to stop crying.

I did stop for a few minutes and then out of nowhere the tears would well up in my eyes and drops of tears the size of half dollars poured out of my eyes. I reprimanded myself internally. I even commanded myself to stop. The tears still came.

My mom, even in her demented state tried to make me laugh. She was nervous. She was stuttering. I needed Helleborus but didn't bring any along with me. Damn. I started to cry again.

We got home and she refused the Helleborus to help make the people go away. I started to cry again. My Mother-in-Law tried to help, I cried. My mom, she got worse. We were trapped in a viscious cycle. I'm sure this happens to everyone. We can't be unique with the way we dance with Lewy.

It's now 7 pm and my mom had her 8 drops of Ashwagandha in a tablespoon of water in the NYPD blue shot glass. Why so early?

Well, we were in the kitchen together and she said, "Susie, you better clean up this mess, we'll have cockroaches." Oh, for the love of God! I JUST finished preparing and serving dinner.

Good night Lewy... I've had enough of you for one day.

Damn! Lewy is Back

I never thought I'd say it but I hate Lewy. It turns my mom into a freaked out old lady who is very difficult to manage.

Yesterday my mom was sleepy all morning. I know that Ashwagandha makes one sleepy. My mom wanted less so that she wouldn't be so tired in the morning.

My big question... why the hell did I listen to her when I had a good solution?

Last night I gave her only 5 drops in her blue NYPD shot glass. I knew that we ran the risk of her roaming through the night, but I wanted to honor my mom's request. She's not gone completely, she is still inside her own head, somewhere... somedays, on good days, I see my dear mom. Today however, isn't one of those days. Oh well.

At 4am this morning I heard noises, creeks from the loose floor boards above our bedroom, our cheap version of a "mom with dementia is roaming" alarm. I ran upstairs as quiet as I could so that I didn't wake up Brian. We really do need to fix the creeks in the floor.

Once at the top of the stairs I saw my mom, wild eyed, worried about people in her bed. I assured her that there were no other people in the house as we walked back to her bedroom. Rachel was up, standing in the hallway, confused and not sure what to do for my mom. Rachel had a look of relief come over her face when she saw me helping mom back to bed.

In my mom's room she stopped as we got into the room, "I can't get in that bed, there are people, see them?"

Again I assured her that there are no people in her bed. I fluffed her pillows, showing her that the pillows are pillows. I made her bed look inviting. She crawled back in. I told her to sleep for 2 more hours. In hindsight, I should have told her to sleep for 4 more hours. I'm such a rookie with Lewy.

6 am... creek, creek, squeek... my mom was up.

I bolted up the stairs again to see my wild eyed mom all freaked out.

"My pocketbook! They took my pocketbook! My shoes are gone too. They are taking everything!"

Oh joy... Happy Saturday Susie, your time in dreamland is over.

My mom, when Lewy has taken over, has no volume control. She talks loudly, which echoes through the hall and down the stairs into our bedroom. She's frightened and nervous.

Again I found myself walking into her bedroom, my mom apprehensive to walk into her bedroom first as she repeatedly told me that the people are taking her things and that she can't stay here. I asked her where she's going to go and reminded her that this is her home. She told me she didn't know where she was going but she was getting out of here.

Alrighty then... I've learned that there is no arguing with a crazy person so I let it all go and began searching for her "stolen" purse and shoes. First I turned on a few lights and found her shoes on the floor next to her bed on the opposite side that she sleeps. Next, I found her purse sitting on her night stand beside her bed.

Mom was freaked out about the little girl and little boy. She is convinced that they exist. Oiy!

I reached into her pill box and pulled out the bottle of Helleborus Niger 30C. "Here Ma, take 4 and put them under your tongue", I said to her with my most cheery and patient voice.

Ma's reply, "NO! I don't want it."

"Why not? It will chase the people away." I said.

"How do you know that?" She replied.

"Because, every time you take them, the people go away. You really need to trust me on this one."

I began to open the bottle and she said, "Oh, the candies... you didn't tell me that you were giving me the candies." So, she put the homeopathic pellets under her tongue.

The people disappeared but her confusion is still there. I did learn today that she hates the word CONFUSED. Hey, I thought it was better than telling her that she lost her f'ing mind!

My mom is anxiously waiting for Donna to take her out. She's been waiting 2 weeks for her, actually longer than 2 weeks. Donna called her a couple of weeks ago and told her that she was taking her to Bingo tomorrow. All morning she believed that Donna is coming today. I wish she were coming today, maybe she will?

I gave my mom 5 drops of Chinese Ginseng in her coffee this morning. It seems to put her in a happy place. She doesn't seem so agitated now. Maybe Lewy is retreating for awhile?

What did I do wrong last night?

First, I only gave Ma 5 drops instead of 8 drops of Ashwagandha. My next mistake was allowing her to watch "Ugly Betty" before bed instead of turning the TV to "ting-a-ling" music station. I also didn't give her Reiki and hypnosis with suggestions that keep her from becoming frightened in the dark of night.

Why did I change the routine? Beats the hell out of me. My mom wanted to watch TV, "Ugly Betty" so she did.

After all, she's still my mother, which she always seems to remember even when Lewy is rearing it's ugly face. The worst phrase I hear out of her mouth when I don't give her what she wants is, "Susie, I'm still your mother!" God, I'd love to sass her back but it only makes Lewy worse.

Hmmm, I wonder if it's a sin if I think all the things that I want to say back to her?

16 October 2009

A Recipe to Share - Lettuce as a Wrap

In the past it has been a challenge to find foods that I can prepare which my mom will eat. She's very fussy. I don't think I was as fussy as a child. If I was, I suppose I have it coming to me.

My mom has troubles with Lewy when she eats any gluten, rice, barley, rye or oats. Even gluten free bread is a problem. DAMN!

I personally love Romaine lettuce and one day I had an idea. If I trim the rib of the lettuce leaf with a sharp knife, I could make it so the lettuce wouldn't snap when I rolled it.

It worked! Now, I use big romaine lettuce leaves in place of the Lavash roll ups. The lettuce is very durable with hot food too.

The next time I make the wraps, I'll write another post and include pictures.

15 October 2009

Bedtime Routine with Ma to Keep Lewy Away

My mom's been sleeping soundly every night since she began taking Ashwagandha. Lewy Bodies, which I believe more and more is the type of dementia my mom has, is triggered when my mom is tired, scared or nervous.

If my mom doesn't get sleep at night, the next day is hell for her. The hallucinations keep her from closing her eyes at night because she is afraid she'd miss something. "What the hell are you gonna be missin' there Ma?" She was afraid she wouldn't see "the man" so that she could fight him off.

Sleep deprivation makes her insane and as a result, I find myself dipping my toe into the deep end of the insanity pool. I usually cry and my face becomes red and swollen. It's a horrible spiral downward, definitely not the right direction for good health for anyone.

However, I think we've figured out a good bedtime routine for Ma and me.

7pm she takes her High Blood pressure pills with a cup of Nettle Tea.

8pm she hops into her bed with glee as she sings, "Oh, my bed... I've been waiting to crawl in all day."

She usually watches a couple of her favorite sitcoms like "The Adventures of New Christine", "Two and a Half Men" and "The Big Bang Theory."

9pm I give her a shot of Ashwagandha and water in Brian's Cobolt Blue NYPD shot glass that he got when he went to school at Columbia, eons ago. She knocks it down like a seasoned drinker, rolls onto her left side (to help with her constipation problem), I put on the "ting-a-ling" music channel, set the TV timer for an hour and I shut out the lights.

With Savita laying next to my mom, I begin to give my mom Reiki and make gentle suggestions. I tell mom that she's a great mom and that all of her kids love her. I assure her that all of her children and grand children are safe and sound. That everyone is happy. Sometimes she'll say, "Ah, that's nice." Other times she'll have a Mona Lisa smile on her face as she tells me how hot my hands are on her back. She loves when I give her Reiki.

I'd say the best suggestion that I plant at night, "If you wake up and it's dark outside, everyone is safe and sound, go back to sleep."

Reiki and Hypnosis combined with all of her supplements, especially Ashwagandha is keeping Lewy away. Ma is sleeping through the night every night and waking up feeling great.

The day time hallucinations are non-existant this week. She hasn't needed any Helleborus Niger 30c, a fabulous Homeopathic Remedy that clears her confusion.

We feel pretty confident that we have found the solution to help my mom keep her mind a little bit longer.

My mom's take on all of this, she believes that she's the first person on the planet that is cured of Lewy Bodies. The mind is a powerful tool, she just could be the first one cured.

14 October 2009

Lewy Bodies, Can a Change in Diet Help?

We're pretty certain that my mom has Lewy Bodies Dementia. The symptoms are similar to Alzheimer's so patients are frequently misdiagnosed.

LBD comes on suddenly after a tramatic event. Sleep walking, hallucinations of people and wild animals. She's been so confused sometimes that she has no idea who I am. Her lucidity comes and goes.

As I've been doing all along I've been researching food and how my mom reacts to it. I read somewhere (I need to do a better job saving those links to include in my posts) that tomatoes, potatoes, eggplant, tomatoes and peppers should be avoided by folks with LBD.

I made eggplant parm, with out bread crumbs. It included tomatoes and eggplant. My mom had a terrible night sleep. This was last week, I think it was Wednesday night when I was up all night with her, doing my best to help her to relax and sleep. Nothing worked.

My mom agreed to cut out her favorite foods, she is of Italian decent and absolutely loves Italian Cuisine, but she wanted to see if it would help stop the crazy nights. She doesn't like the crazy nights at all, they scare the heck out of her.

Since she cut out all vegetables from the Deadly Nightshade of plants she has not seen "the man", "the lady" or the wild animals under her bed at night.

Ashwagandha works to help her to sleep through the night and wake up feeling refreshed and happy the next morning. It also helps me to sleep because my mom isn't waking up. I can finally rest and sleep at night, soundly, for the first time in years. Yay! The dark circles under my eyes are going away.

Currently, we have cut out gluten - wheat, barley, rye, rice and oats. She eats quinoa grain and Amaranth, older grain strains that have been around for thousands of years, loaded with nutrition. We eat seeds, like sesame, flax and fennel.

I've found that if she eats anything baked with baking soda, even the aluminum free kind, she has a problem with hallucinations and sleeping. Unfortunately, gluten free bread gives her trouble too... bummer for her since I figured out how to make it taste delicious.

Fresh organic fruit, dark leafy greens and lean meat like chicken and fish, is the diet that helps her to have more good days.

I'm learning how to live with Lewy. I'm doing everything that I can to help my mom have more good days than bad ones.

She's doing puzzles during the day and playing her keyboard. She enjoys living upstairs in our Master Suite, she feels safe.

Brian and I love living downstairs, we feel like we finally own the house.

Today is a GREAT day! Josie got her sleep and Lewy doesn't seem to be anywhere in sight.

12 October 2009

Moving Ma... what a GREAT move!

Moving Ma to our Master Suite was the best thing we could have done. It was Brian's idea. He's been worried about my mom feeling vulnerable downstairs all by herself in this big house.

Lots of windows and doors. The shadows. The real living people walking on our street and reflecting in the window on the opposite side of the room made it appear that people were floating above the pool. All things that could contribute to her delicate mental state.

I asked her Neurologist if a move would help her and he said NO. Well Doc, we believe it has helped. She doesn't see people upstairs like downstairs. She had the little girl follow her upstairs but she told me she's ignoring her.

I took Ma's picture yesterday, as she was settling in her new room. She did NOT like this picture, she told me that she looks fat in it. I told her that it's a great picture, we needed to take it for Ann and Donna to see her new living space. Ann, Donna... here's Ma's new set up. She is very happy in her new quarters.

This morning her blood pressure numbers were awesome, 117/63 and a heart rate of 53. She is relaxed upstairs. Her room is next to my office. I'll be able to work! All mom needs is for me to be nearby.

Oh... I am LOVING having our new space downstairs. We have a living room. A nice bedroom with an attached bathroom. Not as big as the master bath but still nice. We don't have to sneak around the house. We can roam freely. We can go outside at night with out waking up either mom. A dream come true.

I didn't get to say my mantra this morning upon awaking. I heard the creaky floor above me squeek telling me that my mom was up. I greeted her with a bright good morning and she smiled bright with a big good morning in return.

Finally she needed to use the bathroom. Constipation comes with her condition. All day yesterday I gave her foods and liquids that would get her moving. Before she went to bed I gave her Reiki. She actually fell fast asleep with in minutes of my putting my hands on her lower back.

The Reiki, prunes, hot water, plum tea, senna tea... all of it seemed to work this morning. She needed to use the bathroom. Yay! We could almost hear the band start to play a victory song.

We had a frost last night so I went outside this morning and hosed down my plants, using the old farmers trick to keep the crops going longer. If you spray your plants that have frost on them, with water, before the sun hits the leaves, the plant will live another day.

All my geraniums need to be pulled out. I didn't have a chance to do it yesterday. Today, I will pull them all up and store them for the winter. I'll soak their roots in water for 2 hours once a month through winter and in spring, I'll plant them in the ground again for another round of beautiful flowers. This is the 6th fall that I've pulled these geraniums. I feel so frugal!

Feeling proud of myself for getting out there before the sun hit the leaves, my mom came downstairs and said, "Where's the plunger?" Oh God. Not what I wanted to hear. As we walked back to her bathroom she told me how she knew she should have flushed more... oh God. She told me it was over flowing. Oh God... No. Please I thought, please let me not gag.

I got the problem fixed. I couldn't call Brian out of bed. He's sick with a cold or flu, not sure. I never cleaned the floor in the bathroom yesterday so I got to do it today, before a cup of coffee. I didn't gag either, it wasn't as bad as my mom had me believe.

Mom slept good last night. She didn't wake up. She dreampt of her dad. He didn't say anything to her, he was just there.

Moving her was a great idea... a great move. Today is another GREAT DAY because I'm declaring it right now to be one.

Happy Monday. Today we see her Endocrinologist, our favorite doctor.

11 October 2009

Another GREAT Night for Josie!

Yesterday my mom had a fairly good day. She only saw the little girl, the mischievous imaginary little girl a few times.

When she'd see the little girl, I'd give her 4 helleborus pellets, a homeopathic remedy that has worked to chase the hallucinations away during the day. The dose lasts about 2-3 hours.

This morning, I was up before my mom and before Savita could take her revenge by pouncing to stir me out of my slumber. I awoke and remembered my favorite morning Mantra... "Today is a GREAT DAY!

I walked down the squeaky stairs, we never completed our tasks yesterday to move my mom upstairs; the creaky stairs woke her and she began to call my name.

"It's OK Ma, it's me, Sue. Good morning!"

Mom's fright turned into a smile, she was happy to see me. She told me that she slept really well and only got up at 2am to use the bathroom but went right back to sleep.

This morning the little girl seems to be gone from her visions. Her blood pressure was pretty good, a little higher than yesterday morning but still good. Blood sugar, great as usual.

I read somewhere that cumin is good for people with Lewy Body Dementia so last night I made my new favorite chicken dish that is made with cumin.

Yesterday I made sure that my mom avoided tomatoes, potatoes, eggplant and peppers; all plants from the deadly nightshade variety of plants. I'm becoming a believer that these foods aggravate her brain and bring on her hallucinations and night terror episodes.

Today, mom will move upstairs. She is excited. This morning she told me how she had dreams that she was in her new room.

Yes, today is a GREAT day!

10 October 2009

Today is a GREAT DAY!

Last night we all got a great nights sleep. It was awesome sleeping with the windows open a little and having the fresh night air fill the room.

5am the cat came into our room and took a leap to run up my body. Savita is my little alarm to let me know that my mom is out of bed or having a problem. Every time, like a little alarm that was triggered, the cat comes to get me.

I went downstairs and my mom had woken up but wasn't out of bed. I asked her how she was this morning and she said "Great! I feel so good today. I love sleeping in the morning." I took the opportunity and told her to roll over and sleep on her left side. Years ago I had learned from a nurse that if you lay on your left side, it gets your intestines in the right position so that it's easier for your stool to move. She needs a good movement today.

Mom rolled over on her left side with her head nestled in her pillow and a smile on her face. I rubbed her head like she used to do to me and her mother used to do to her. She drifted off to sleep in seconds.

I went back to sleep too. It really felt good to sleep and feel peace.

8am, Cat alarm... Savita made her flying leap on the bed and landed on my legs. Last vet visit she weighed 11.5 lbs. It hurst when she lands. No claws are out, it's just sheer body weight. She's learned the higher she jumps the harder she lands. Of course she doesn't try this trick on Brian, just me. It's almost like she's getting back at me for all those times I rub her belly with my hand, she hates hands.

I got up as I remembered to say the phrase outloud, "Today will be a GREAT DAY!" I declared a great day for myself today. Saying this phrase outloud works as you get out of bed in the morning. Enthusiasm and strong emotion puts power behind the words. I always have a great day when I start it with a grand declaration as this phrase embodies.

My mom was half awake. The squeeky stairs woke her as I walked down them. She felt really good. Her blood pressure was 143/63 - a very good reading for her. Her blood sugar was 104, higher than usual but it's probably because she forgot to brush her teeth last night.

I had coffee with my mom this morning as she took her little dish of supplements. She was excited to tell me that she remembered a dream. That the dream woke her but she realized that it was just a dream.

She told me that she dreampt that the UPS guy came with a package. She described other sounds and things that were going on. At one point she heard someone shoveling snow... then she said to herself, "snow? this must be a dream." She did eventually get up and see if there was a package at the door and snow on the ground. When there wasn't a package or snow, she was became pleased with herself for being able to distinguish between a dream and reality. She tucked herself back in and went back to sleep.

Brian and I are noticing a pattern with my mom. She has 1 good day after a solid night sleep and then the next 2 nights she sleeps less and wakes up frightened by hallucinations. I read that eggplant and tomatoes can cause a problem for folks with Lewy Bodies. The days my mom eats eggplant or tomatoes, she doesn't seem to sleep. No more eggplant and tomatoes for my mom, not until I can see if these foods are the triggers for her sleepless nights.

I can't find the article that I had read that discusses the deadly nightshade family of plants and how the active ingredient in the plants fruit is bad for people with Lewy Bodies. However, I did find a Psychiatrist MD with Lewy Bodies writing about the disease from a personal perspective. I am thrilled to have found his blog.

Mom is a light sleeper. She lives on the basement level of our home currently, where you can hear all the house sounds. Today, we are moving her upstairs and giving her our Master Suite. It's more remenesce of her bedroom set up in the house I had owned in Groveland.

Brian and I will take over the downstairs. We will have the entire floor to ourselves. I won't need to walk by my mother in law every time I want to go outside or out for a drive. Maybe it's my own paranoia but I always felt like I was under her watchful eye.

I love my mother in law, we've become closer because of my mom's condition. I was frightened of my ML for so long, she scared the snot out of me. She has a mean streak that you don't want to cross. I crossed her when I married her son and moved my mom, our cat and myself into Brian's house. I got the impression that she viewed me as a jesabell or something.

Remembering my dad's wise words, "Susie, wait a minute, things will change", I waited. I was as patient as I could be. I changed my mind. I changed how I approached her. I replaced my fear with love.

I'm a pretty good cook, although my husband calls me a gourmet chef. I began cooking my heart out, making everything fresh and from scratch. My mother in law never tasted food so good and just last night she told me that my cooking is better than the finest restaurant. She's so sweet, especially when she likes you.

My Mother in Law watches me still, all day. Only now she watches me care for my mom. She sees that I'm doing everything possible to help our little Jo, Rachel's only friend. Rachel loves my mom and was upset when she heard the news about my mom's dementia. Rachel wants my mom to continue living here with us, she would worry about her in a home, like I would.

Moving my mom upstairs, Rachel and Jo will share the main floor of the house. We feel it will help my mom a lot and Rachel too. They both need to socialize and neither of them are very social, they never have been.

Side note: If you are young, make sure you keep friends and socialize, they will be very important people when you are all old together. Maybe one of them will help you find your lost mind when you need it the most.

Anyway, today IS a GREAT DAY. No more tomatoes, eggplant, potatoes and peppers for my mom.

09 October 2009

Could it be her kidneys?

Finally we got my mom's blood test results from the Neurologist. We sent them on to our Naturopathic Doctor to review.

Yesterday he sent me a note with a few questions to as her MD about her kidney function. He mentioned that kidney disease can cause dementia.

I think she has kidney disease, I am not sure. I do know that she had a stent put in her kidney several years ago because the artery was blocked about 90%. Could the other kidney be giving her a problem now? I do remember the doctor telling us that it was blocked but not enough to have a stent inserted.

Last night was another rough night. I got zero sleep. My mom had a look about her which made me feel that I needed to sleep on the couch outside her bedroom. I gave her Ashwagandha and it didn't make her sleepy.

My mom woke up at 12:30, 1:30, 2:30 - 3am my Mother in Law woke up and turned on her TV, I could hear it echoing through the upstairs hall and down the stairs. The sound was annoying and I couldn't sleep, even though I was exhausted. 4am I heard our bedroom TV come on, Brian woke up.

I found a comfortable spot on the sofa and felt my body going "ahhhhhh, at last, sleep."

4:30 am I woke to hear my mom shuffling around. I got up and she was fully dressed. I convinced her to put her nightgown back on and go back to sleep for a few hours.

By this time my nerves were shot and as I laid on the couch I began to sob. I couldn't stop crying. My mom got out of bed and tried to comfort me. All I could think was that I can't do this anymore, I need my rest, I need my life back... but it's my mom, I can't abandon her when she needs me the most.

I stopped crying for a few minutes, long enough to tuck my mom back in her bed. It is now 5am and the neighbor with a very loud diesel engine started up his truck. Brian's TV was still on. Rachel's was off (thank God.) I heard every sound, amplified by the darkness in the room.

7am I finally got off the sofa and came to realize that I was not going to get any sleep. I went to my mom's room and she was dressed again, sitting in the dark.

This morning we went for more blood work to check on her diabetes. We see her Endocrinologist on Monday - always my favorite appointment because my mom's diabetes is under awesome control with diet and exercise.

Sometimes I wish we still lived in my house. It would make it less confusing for my mom. She loved my house. I did too. I miss my 1930's bungalo with it's quaint appearance that when you walked in, immediately you felt at home.

But, there's no going back, the house gave us lots of great memories ... time to make new memories, even if they are with people and animals that only exist in my mom's mind.