Happy Saturday

Life is peaceful today.  My mom woke up in a good mood, sleeping through the night always brings a happy morning.  Today she sang, "Good Morning!"

I noticed that when I include cumin, coriander and fresh ground black pepper in any dish that I prepare for dinner, she seems to wake up less confused.  She still hallucinates, but the visitors are not upsetting, they are her friends.  I can handle happy hallucinations, they're much easier to explain away.

Today we'll go to the farm stand and get a box of B rated tomatoes so that I can put them up for use later in the year when tomato season has long been over.  One of my greatest joys is when the snow is flying and I'm able to open a jar of tomatoes that I had preserved during the peak of the season; the taste of summer in winter is awesome.

It's shopping day.  My mom is waiting, she's ready to get the show on the road.

Care Giver Emotions and Attitude Matter

I'm a Care Giver for my mother.  I don't know how it happened, it just did.  I'm not sorry for the time I've spent with my mom; my mom taught me a life lesson, eat right, get plenty of exercise and sleep.  She also taught me something else that was unexpected, it's never too late to take care of yourself.

I was heading for Dementia Highway... in Mom's footsteps.  

My diet was not good.  I wasn't getting regular exercise, just sporadically when I felt the "Oh Shit" come over me when I finally got the courage to stand on a scale.  Each time I stood on the scale, the numbers climbed until I was obese, just like my mom.  I was unhappy, it had a negative affect on my spirit.

The other day I was talking to my new best friend and she said, "You know, caring for your mom was YOUR journey.  It was something for you to go through alone."  I have thought about her words since she spoke them and she's right.

I call it Karma, others would call it the luck of the draw.  

It has been a journey caring for my mother.  I learned a lot about myself, some good and some not so good.  I even forgive myself for all the not so good things that I may have done or thought.  I'm human.  I'm here to learn and create a life that will be remembered, long after I'm dead.

Every one can be an asshole to someone sometime.

I really don't remember who said those words, but I do remember hearing them years ago when I was young and impressionable.  I often wondered if it was just an excuse to be a shit head sometimes?  Looking back from a wiser place,  people are competitive and sometimes we all just suck; especially when we think it's all about us.

It takes work to be nice.  I remember a nun telling me once, "You get more with sugar than vinegar."  I never really understood what she meant.  I wanted to understand so I would be nice to people... old people.  Hence the beginning of my attraction to seniors and helping them during their tough times.

It's rewarding to care for a senior with dementia.  

There are days that just seem impossible when caring for a demented senior; I know, I live with one.  I have noticed that when my mood is not the greatest, my mom's behaviors are unbearable.  She's more bitchy and less agreeable when I am not in a good place mentally.

Demented people are super sensitive to emotions.  They tune in to feelings and can immediately scan a room and draw a conclusion just by the energy everyone is giving off.  I think this could be a reason why demented seniors have a hard time in crowds.  People are just uncomfortable around demented people.  Hell, how do you respond when someone says, "Hey, look at the elephant in the pool!"  or "Look at Eddie in the trees!" (Eddie is my dead brother.)  It can be a bit unnerving and seems to always trigger unacceptable behaviors.

I've noticed that when I'm happy; when I am singing... my mother is happy and listens to her mp3 player and sings "Here we are.... here we are......" all day long.  It's the song by Jason Mraz that she thinks sounds like angels singing to her.  Hey, whatever it takes to keep her happy, is super.

She didn't have acupuncture this week.  Dr. Barton is on vacation and she didn't want anyone else to do it.  She's had trouble finding her words all week and it's been bothering her.  I've been in a good mood because I have had respite.  I can handle her agitation and turn it around.

Monday, she will have acupuncture again; she is looking forward to it.

Another observation that I've made is Acupuncture won't work very well if the patient is agitated.  A couple of weeks ago my mom was pissed off.  I was tired and not in a good mood.  She was difficult.  She didn't want acupuncture because she keeps telling me that it's too expensive.  I told her that she has to do it because it makes it easier for us to communicate.  There was no getting through to her, she was not buying it, she wanted to be in control, period.

I let it all go.  I didn't force her to have acupuncture this week.  Now, she can't wait for Monday so that she can talk again after her acupuncture treatment.

In a nutshell, care giver emotions and attitude matter more than anything.  Keep smiling.  Sing.  Get respite so that you have the strength to keep doing your angel work.

I Have Found the Silver Lining in the Clouds of Life

Respite days come and go as quickly for me as weekends did when I had a paying job.   Time passes  fast when I am allowed an opportunity to put Care Giving out of my mind.  Our Visiting Angel Cheryl carries the burden, allowing me to focus my time on myself.  Respite is exactly what we needed, everyone is happier, especially me.

It's really hard for me to fathom the thoughts that I was having during the hardest days, when I was completely alone for weeks on end caring for my insane mother.  

Respite saved us.

Two days in a row helps me because I can do things that I enjoy, things that feed my soul and create a sense of well being.  Respite causes me to sing and hum tunes, it makes me feel so good that I laugh.  I can handle Care Giving now, it's easier because I know that I can get away and recharge.

Yesterday was a great day for me.  I had bought 25 pounds of B rated tomatoes for 12 dollars from my favorite farm stand.  Tomatoes that I blanched, skinned, cored and slowly cooked in my crock pot in the morning before I left for some fun.  Dinner was Eggplant rolls with a 3 cheese stuffing.  The fresh tomato sauce gave dinner the taste of summer, flavor that only comes with fresh picked tomatoes.

I spent my day with my new best friend, she made me cry, however the tears that I shed were different than those from the past few years, these tears were tears of relief.  I have a friend.  I have a family.  I have an awesome husband.  I have found the silver lining in the clouds of life... family and friends!

Music to My Ears

It's been a good couple of days for us, even my mom. She slept through the last three nights. I've cut out dairy, well almost all dairy; I let her have a little quality cheese, it doesn't appear to give her a problem.

Sunday my mom spent the day with my sister Donna who took her for a visit with my brother Marty and my favorite sister-in-law, Patricia.  

Realizing that any gluten causes my mom a problem with cognition, I packed a lunch for her; Coconut Cod, steamed asparagus and Sweet Potato fries.  The fish, was uncooked, but ready for a quick fry in olive oil.   It came out fabulous and my mom came home not as confused as she has in the past.  Yay!

Yesterday morning, my mom woke up alert and happy.  She was chatty.  She told me about her visit with her kids.  My mom was nearly able to tell me about their conversations, only forgetting a few words which made it a little difficult to understand what she was saying.  Still, her ability to find words was better than it had been in the past.

Cutting out bread, gluten specifically, has helped her to have clearer days.  Her blood glucose readings are in the normal range, below 100.  Low blood sugar seems to bring with it lower blood pressure readings. Lower readings seem to allow her to communicate with us and she becomes less agitated.  Lower readings also keep hallucinations away.  Yesterday morning she said to me, "Hey, where is every one.  I don't see anyone!"  My mom seems to miss her hallucination friends when she doesn't see them.

Last night before dinner my mom said to me, "Susie, who are those ladies that were just here? They are trying to tell me that they are my mother but they are not.  What are they doing here?" She asked.

"Really?  Well, I will call Dream Master, these people are NOT supposed to be here.  They are just messing with you.  Dream Master will take care of them, he has put a restriction on our property, if any of them come into the yard or worse, into the house, they immediately go to hell."  I replied to her in a matter of fact tone as I continued, "I'll call him, you won't need to worry about seeing them again.  Here, let's get ready for dinner."

The hallucinations went away as soon as I told her that I called Dream Master.  She relaxed.  She had dinner.  It was a quiet night for us, a third good night in a row.

Today is our Visiting Angel day, Cheryl will be here in a few hours giving me respite.  I feel so much better now that I am getting a few days a week off from Care Giving.  My life feels a bit more free where I am able to enjoy little things like weeding my garden.  I'm singing again; I am happy.

My mom is happy again, 3 days in a row she woke up in a pleasant state, "Good Morning!" She sang, music to my ears.

Sandwich Dementia

Kidneys, we all have them and we all need them to live.  Kidneys filter the blood in the human body, removing the waste and leaving the nutrients behind for the blood to carry to other organs and the brain.  Blood tests are done to determine the BUN and Creatinine levels, levels which help doctors to understand how well the kidneys are functioning.

My mom's BUN and CREATININE have been high lately.  I've noticed that when these numbers are high, she tends to hallucinate way more and it's more difficult to keep her blood pressure down.

In the past we have been able to keep her BUN (blood urine nitrogen) and Creatinine low through a diet change and exercise.  Keeping blood sugar under control appears to be a huge factor in helping keep these numbers low and as a result, help my mom have more good days than not so good days.

Diet restrictions had made my mom a pain in my ass so I caved and allowed her to eat foods that I had limited or cut out completely.   Looking over my blog posts, this is when everything turned from OK to worse than ever.

I am beginning to believe that bread of any type is what causes my mom a problem.   Simple carbohydrates are the absolute worst for elevating her blood sugar, triggering hallucinations and weird behaviors.

I've also noticed that meals heavy in meat protein tend to cause her a problem too.  Steak especially gives her trouble; I wonder if it's because it's a heavy muscle meat with more fat than chicken?  She loves beef and complains often because I cook lots of chicken.

My mom loves sandwiches, especially the sandwiches that I make (they are really good, I'm considering opening a sandwich shop.)  My sandwiches make her happy, a happiness that is short lived.

Sandwiches raise her blood sugar.  Elevated blood sugar brings on hallucinations which often upset her, leading to elevated blood pressure.  Both of these factors elevate the bloods BUN and CREATININE levels, showing that the kidneys are not able to handle the waste load in the blood.

My conclusion?  Mom needs to be on more of a vegetarian diet.

I've noticed that when I make a vegetable soup or a soup with chicken as the meat, my mom has better days. In soup I am able to include herbs and spices that are beneficial for improved cognition.  These herbs and spices work fast when they are in the soup that I make for my mom.

I had been allowing my mom to eat more sandwiches because it was a way for me to get approval from my mom... an approval that I had yearned for my entire life.  My mom has been difficult, complaint after complaint, all very upsetting.  Upsetting because I wanted approval, approval that was never going to come, not now, not ever.  However, sandwiches seemed to give me a quick fix where I would get lots of "mmmm's" and "this is terrific" out of my mom.  Unfortunately, this happy state was short lived and always ended where my mom's hallucinations would intensify or she'd just turn into a half crazed lunatic.

My sandwiches, as delicious as they are, my mom can not have them as often as she would prefer.  I'll explain this to her when she wakes up.

Friday we saw Dr. Barton.  He is the one who looked at my mom's blood test results over the last 6 months, results that has him thinking that my mom's trouble could be from her kidneys.  He asked me to graph all of her blood test results so that he can see a trend.  He also suggested that we call my mom's kidney doctor in order to discuss the blood results and my mom's mental state.

I will make the graph.  I will go one step further and line up her blood test results with the quality of her days.  I've documented every day for nearly 2 years, hopefully it will give the doctors the information that they need in order to help us to help my mom.

From where I sit today, I believe that if I cut bread and dairy out of my mom's diet, she'll have days that are more clear where she can find her words and be more present in this world.

Could sandwiches be the trigger for my mom's dementia episodes?  Stay tuned as we uncover the mystery of sandwich dementia.

Our Day Is Done

I didn't expect today to work out as well as it did.  In the past, when my mom has had a night of insomnia, the following day usually sucks for everyone.  Today however, it was different.

7 AM my mom went back to sleep, so I did too.  I slept until 10 am.  I felt great when I woke up.

My mom was ready to go to Whole Foods for our weekly trip to the store.  Clutching her purse she said, "So, you ready?"

Barely awake I answered back in a soft voice, "No.  Give me a few minutes to wake up."

We went to Whole Foods.  She was quiet.  She was having trouble finding her words today.  Acupuncture didn't seem to do its magic and help her find her voice.  She was bummed that she wasn't able to communicate with me today.  I think it could be that she's so tired from not sleeping last night.

She attempted to come into the pool, putting her bathing suit on but never making it up the ladder and into the water.  She felt dizzy being outside and went inside.  At least she knew enough to get out of the heat of the day, that's a good sign.

My mom was pleasant today.  She didn't want to do much of any thing so I didn't force her.  She did want to know when she was going home.  I changed the subject.

Our day is done.  She's tucked in.  Let's hope she sleeps through the night and wakes tomorrow happy and able to tell me what's on her mind.

Dairy and Insomnia in Dementia Patients

Last night sucked.  My mom woke up and at 12:05 AM I found her fully dressed, ready to go out.  Really Ma?

I got her to put her nightgown back on and I tucked her back in bed.

5 AM - Squeak, Squeak, Squeak.

My mom  was awake, fully dressed again and ready to go out.  She had a bag packed, a paper bag with her blood pressure machine, a sweater and a box of tissues.  When I asked her where she was going she told me "home.  I want to go home."

Well, that's not going to happen, I have no idea where she thinks home is, it could be anywhere that she had lived during her 81 years on Earth.

Yesterday she had Acupuncture, it always helps her, mostly it helps her to find her words so that she can communicate with me.

Dinner, I made soup with all the herbs and spices that I know help with cognition, ingredients that tend to help my mom have better days.  Where I made a mistake was giving her a glass of milk.  I bought a new brand of lactose tolerant milk, milk with added lactase.   Land-O-Lakes brand lactose free milk has potassium chloride added to the milk, an ingredient that is not in Lactaid.

I was told months ago that dairy can cause night disturbances in dementia patients.   I stopped giving my mom dairy and she began sleeping through the night.  Last night... she was up all night.  Thinking that she was hearing knocking, knocking from someone who wanted to come inside.  Of course there was no one there, just the figment of my mom's imagination.

Dairy and insomnia, is there a connection in dementia patients?

Stuffed Squash Flowers

I grew up in Lynn on a street behind the City Hall.  A family from Italy moved in across the street from where I lived; a family that didn't speak English, a family that taught me a lot about gardening.

The Gallo's were really nice people.  I especially loved their approach to gardening; dig up the lawn and put something in the dirt that can produce food.

Mr. Gallo dug up his pristine lawn.  I watched how he did it; for hours I watched him work as I sat on my front stairs drinking a coke out of a glass bottle.  Watching him was entertaining and a bit educational.  I was happy to learn from my new neighbor even if he didn't speak a word of English.  I just watched and learned.

The one thing that he did that I found odd was the day he put up a smaller chain link fence inside the perimeter of his larger chain linked fence.  He had created what looked like a moat around his garden.  They got a dog, a German Shepard dog, it was mean to anyone who came near the large outer fence.  Only once did I go up to the fence.  The dog showed me his teeth, it scared me... I never went near the fence again.

The moat worked.  No one bothered the garden and the produce that they got out of their small plot of land was amazing.

I became friends with Grace, she is younger than me.  I remember saying hello to her when she first moved in and I freaked her out.  She screamed, "NO SPEAKA DA ENGLACE" and ran home as fas as her little legs would take her.  I felt so badly.  I followed her home.  I was about 10 and I couldn't imagine someone not liking me or worse, being afraid of me.

Eventually, Grace became my friend and I was over her house a lot.  I loved watching her mom cook.  Her mom didn't speak English but she seemed not to mind having me over her house, under foot in her kitchen.  Mrs. Gallo was a big influence in my life and we never spoke.  Looking back, I would imagine this is what my mom's relationship was like with her Italian mother.  My mom never spoke Italian.  Her mom never spoke English.

Fast forward to yesterday....

I was tending to my garden and saw all the male squash flowers covering my squash plants.  I remembered Mrs. Gallo out in the early morning hours picking the squash flowers.  She'd call me over and then she'd show me how to use the flowers.

Following is a version of the stuffed flowers, not exactly Mrs. Gallo's recipe, because I don't use regular flour anymore.  I did look online for a recipe to remind myself how to make the stuffing and I found one here at Gastronomical Three - What to do with Squash Flowers .

I used what I had on hand.  I had goat cheese and used it because the author of the article suggested it.   Here's how I made mine using fresh herbs from my garden.

1/2 Cup Parmesan cheese - grated.
1/2 cup goat cheese
2 eggs
2 Tbsp chopped flat parsley
2 Tbsp chopped oregano
Few sprigs of fresh thyme (leaves pulled off)
2 Tbsp chopped basil leaves
4 cloves of garlic chopped fine
1/2 cup gluten free bread crumbs
1/2 cup Coconut flour
1/4 cup olive oil

Mix all ingredients together until it looks like the picture.

Gently take the flower and put about a teaspoon of the mixture in the base of the flower.  Fold the petals around the stuffing and then dip them in egg.  

Dust in the flour.  The stuffed flower should look something like the picture below.

Put 3 - 4 tablespoons of olive oil into a large skillet and heat the oil until it shimmers.

Gently place the floured stuffed flowers into the hot oil.

Allow the flowers to turn a golden brown color, a few minutes on each side.  I use tongs to help move the flowers and turn them so that the flowers cook evenly.

Remove the golden stuffed flowers and place on a paper towel to drain excess oil.  

Plate and serve.  

I've thought of making a marinara sauce and using it as a dipping sauce.

NOTE:  There's a small window of time where the flowers are open.  If you wait to long to stuff them, they will be closed.  If you find that this has happened to you.  Skip the stuffing.  Egg and flour the flowers and cook in olive oil until they are browned on both sides.  

Is It Worth It?

Riding the crazy train with a demented conductor always leaves me scratching my head wondering what exactly just happened.

"You know, I'm wondering, how did I get here?"  My mom asked this morning.

She is clear this morning with a lower blood pressure reading, 134/67.  It feels like a good day for my mom and indirectly, a good day for me too.

My mom was up early, around 6 but she let me sleep.  She didn't squeak the floor until 7 when she wanted a cup of coffee.  

"Good morning!"  My mom sang to me when I reached the top of the stairs.  Music to my ears.

We had a bean and vegetable soup last night, a hodge podge of ingredients that I had in the fridge.  I used all vegetables that I had on hand and picked fresh herbs from my garden.  I used spices that are known to help folks with cognition issues.  I have noticed that when I make a soup for dinner using cumin, coriander, turmeric, black pepper, thyme, basil, oregano, my mom has a good day.  I'm excited.  We'll have left over soup for lunch.

Today we see Dr. Barton for another Acupuncture treatment and this afternoon she sees the ophthalmologist about her "magic eye", the eye that has retinal hemorrhaging.  The doctors want to operate.  I worry about anesthesia and how it will effect my mom.  I have heard that anesthesia can have negative after affects on folks with dementia.

Is it worth it?  

When we see the surgeon today, I'll ask if surgery is guaranteed to fix her vision or if the risk is high for going blind in the eye.  She has one good eye which will allow her to see.  She has been using her one good eye for a very long time.  Maybe going blind in her Magic Eye will help stop some of her hallucinations which seem to come from shadows that are formed in the eye?

Is surgery worth the risks?  From where we stand today with the knowledge we have to make a decision, the answer would be no.

Happy Friday!

Our Trip to the Doctor

We visited my mom's Cardiologist today.  It wasn't as bad as I had been expecting.  The doctor knows how we feel about cholesterol lowering meds.  My mom's cholesterol was in the normal range, 114 and he wanted it lower, he wants her cholesterol to be 70 because of her hearts medical history.

Seniors taking cholesterol lowering drugs is not a good idea.  It causes muscle weakness.  It causes more harm than good.  My mom stopped taking this drug a long time ago, back when she still had her mind.  Cholesterol lowering drugs caused her lots of muscle aches and pains with a general feeling of "icky."

We waited for the doctor.  My mom was doing all these cute poses.  I had my camera so I started to take pictures of her.  We laughed and laughed, it was a fun way to pass the time.  I'm sure we sounded like we were having a party in the exam room while waiting for the doctor to arrive.

The doctor came in, talked about the importance of keeping ones blood pressure and cholesterol low.  He was not telling us anything that we haven't heard before.   He tried to get his head around the idea that my mom wasn't taking any pharma meds... he told her that he wanted her to take some.  Why?  Not sure.  We listened.  We smiled.  We left.

Driving out of the parking lot, I stopped at a stop sign and a hawk flew in front of the truck carrying a squirrel!  WOW.   The hawk landed on the ground.  I had my camera.  I pulled around the corner and hung over my mom while I took pictures and movies.

The hawk did not like us standing so close to him and his dinner.  He gave us a few choice hawk sounds.  I tried to scare him with a toot of the horn.  It didn't work.  He stayed put looking annoyed with us.

Here's the little video that I had taken... I especially love my mom's reaction to the hawk.

864

"You know, I was in jail.  The judge told me that I was awarded $864 and if I go and pick up the money, they'll arrest me and throw me in jail again."  My mom began answering the simple question that my husband had asked my mom.

My mom believes that she went to jail after watching an episode of Judge Mathis.

Last week, when she was having wild hallucinations after sitting in the backyard for hours in the heat, she believed that she was part of the TV court drama.  She believed that the judge awarded her money... she believed that he threw her in jail.

On the drive up to Maine, she told us about jail.  "That was the worst experience, being in jail."  I do remember her being very angry with me after the court show had ended.  I wouldn't let her go outside in the heat.  I made her stay inside... this must have been "jail" and I was her warden.

Dehydration.  It is allowing my mom to dream up some pretty crazy scenarios.  Over the last few weeks, I've gotten myself into a great deal of trouble with her.  Hallucinations created in her mind made her angry... with me!  She has had a chip on her shoulder, attempting to pick fights at any moment.

It has been difficult for me to keep my mouth shut.  It's akin to someone poking you with a sharp stick.  It's annoying and after constant poking can drive even the most patient Care Giver to a breaking point.

My husband was able to talk to my mom last night before dinner.  She was agitated.  She was stuck on her jail hallucination.

"I am worried about the $864 that I was awarded by the judge.  If I go to pick it up, they'll arrest me."  My mom told my husband.

"Well, what if we can get them to send the money to someone else?"  My husband asked.

"No.  They'll get in trouble.  I'm worried that whoever gets the money, will be arrested."  My mom added in a worried tone.

"What if we have them send the money to the baby?  They can't arrest the baby."  I added.

"Yes, we can be sure that the money goes to your Great Grandson, then you don't have to worry about losing the money or going to jail."  My husband continued as he brushed his hands together as though he was dusting dirt from them, "It's all done, nothing to worry about."

My mom looked at Brian as though a bulb went off in her head.  "Aw, gee thanks.  That's terrific."  My mom was smiling, she was relieved.  She was getting the money "owed" to her, wasn't going to jail and she was able to give something to her handsome little Great Grandson.

Today we'll find out definitively from the blood test if she does need to be juiced up with more fluids.  I have noticed that after she has something like chicken soup. she does seem more clear and is way more pleasant.  My mom is drinking water, in her demented state, deep down she knows that she needs to drink water.

Hallucinations are part of our day.  Food and water are the triggers, too much food and she will hallucinate, too little water will also bring them on.  It's a balancing routine for us, every day we walk the line between Crazy Land and Reality.  What will today bring?

Water... We Need It To Live

"Ma!  You need to drink water or you will die!"  I exclaimed to my mom.

She's been hallucinating and her behaviors have been truly demented, regardless of supplements or Acupuncture.  Acupuncture makes her less agitated, which helped us get through some of her demented episodes.

I know my mom needs more fluid.  I know that she has become dehydrated, sitting in the heat of the summer sun.  She refuses to come inside.  Part of her problem is just to be defiant, to keep control of her life... "I'll come in when I'm ready!" Is a phrase that I've heard often.

The more dehydrated my mom became, the more disagreeable she had become with me.  It was frustrating for me because I knew that if she stayed in the humid heat, day after day, she could have a stroke.

Disoriented.  Hallucinations.  Fatigue.  Exhaustion.  All symptoms of dehydration; symptoms similar to urninary tract infections.  We had her tested for a UTI and it came back negative.  What could it be?  Is all I could think.  What could be the root cause of her sudden changes.  Is it the progression of her disease?  I don't know.

Makes me wonder if other Care Givers who experience difficult behaviors with negative UTI results in their wards are really dealing with dehydration symptoms?  Symptoms that seem to be magnified by the neurological disorder in their brains.

I made my mom Chicken Soup.  I put in fresh herbs from the garden, sage, parsley, thyme and tarragon.  I sprinkled in Turmeric and tossed in 6 peppercorns with a few bay leaves.  Chicken wings always make the best soup; I had wings in the freezer.  I cut up fresh carrots and celery with a sweet vidalia onion chopped into chunks.

She got home from the foot doctor with Cheryl and was clearly disoriented and weak.  I had her eat soup which seemed to revive her a bit.  It also seemed to turn on her appetite.  Her appetite had been awful the last few days.  She ate chicken and a mortzarella, tomato and basil salad that I had made with some ingredients from the garden.  She loved it.  She ate an orange.  She had more water.  She had a coconut ice cream.

By the time my mom was going to bed, she was coming back to life.  She was more pleasant.

Today we need to go and have blood work done for her visit to the Cardiologist tomorrow.  She woke up early and I told her about the test.  She agreed that laying down for an hour would keep her mind off wanting to eat or drink.  Logic.  My mom is logical this morning... Yay!

Water... we need it to live.  My good friend Pauline, she has a parent with similar issues as my mom.  She wrote me a note yesterday about her dad and how he had become dehydrated when he was out with her and her kids one day picking strawberries (I think it was strawberries.)  A little bit of an IV drip fixed his disorientation and weakness.

My mom refused to go to the hospital.  I think she was afraid that I was going to bring her to a nursing home. I got her to drink because of her fear of the hospital.  She is better today and she proved something obvious, water... we need it to live.

Can Dehydration Cause Hallucinations?

It's never a dull moment when caring for a senior with dementia.  As a Care Giver to my mom, I have gotten in the habit of observing everything from a watchful eye.  I notice changes.  I've come to realize that subtle changes can mean big trouble for my mom.

Hallucinations are always a part of our day.  I hear about wedding ceremonies and visits from dead relatives.  She sees wild animals and domestic animals, frequently asking me when did we get 2 more cats.

Hallucinations can be unnerving for folks, to be pulled from reality and into the world of the demented, especially when the individual experiencing delirium is a parent.

Over the last 2 years, I have written my observations, thoughts and feelings about my mom's illness.  Analytical thinking has driven me to find the reasons for my mom's behaviors.  I believe there's always an answer, a simple solution.  I believe there's always a cure for everything, even when doctors tell us "there's no hope for a cure."

Really?  No hope?

I believe that there is no KNOWN cure for what ails my mom and so many other seniors on the planet.  Maybe there is a known cure but because the drug companies and medical community are profiting from the illness, the truth is being kept from us.

The reason that I believe we could be being duped is that in America, the healthcare system is in the healthcare business, a business FOR PROFIT.  These companies do not owe anything to the people who consume their poisons, they do have a legal fiduciary obligation to their stock holders.

For profit drug companies makes me wonder why people believe in drugs, drugs that seem to make a person more sick, requiring more drugs.  Until healthcare becomes NOT FOR PROFIT we won't find cures, or if cures are discovered, everything will be done to keep the public from hearing about it.  This one fact has been my driving force, it keeps me hopeful and looking because I don't believe anyone who's profiting from illnesses.

We've done a lot to help my mom to be more present so that she can enjoy her family and her life.  She's physically stronger than she's been in decades.  She's off all pharmaceutical medications, taking only natural supplements and food.  We have a Naturopath Doctor who helps prescribe plant medicines and administers Acupuncture twice a week.

My mom is doing much better.  She's lost 100 pounds through changing her lifestyle.  She couldn't change it on her own.  I was a bit of a bull with her, insisting that she change her ways or she'd be committed to a home.  It was a fight, an uphill battle to get my mom to understand that I wasn't being mean because I wouldn't let her eat junk foods, foods that I believe brought on the illnesses in her body.

It's been almost 2 years since we began down the road of renewed health.  We all are healthier and in a better state of being because of a few simple changes that we made gradually, one change at a time, slow and steady.

On Saturday we went to Maine for my mom's 81st birthday celebration.  It was hot.  Very hot and humid.  My mom is a senior, seniors with dementia lose their thirst response.  Drinking water and staying hydrated becomes difficult for a senior, especially one with dementia.  Lack of fluid in the body throws off the balance and can cause UTI's (urinary tract infections) which are prevalent among seniors with cognition issues.

UTI's cause hallucinations in my mom.   Hallucinations that talk to her and tell her things, she becomes delirious.  Believing what her hallucinations tell her, my mom often gets angry with me for no logical reason.  It sucks.  Hallucinations that turn a patient against a Care Giver leaves one with no recourse; a nursing home.  My mom has been hallucinating a lot the last few months, bringing behaviors to the forefront which are making me look for nursing homes to have her live.

I did learn that when her blood pressure and blood sugar are elevated she hallucinates.  When both are elevated at the same time, she hallucinates but she also turns on me, her Care Giver.

The most recent observation that I've made is the link between dehydration and her hallucinations.  My mom has been complaining of her kidneys hurting.  We had a pee test done and she doesn't have a UTI, but she is hallucinating like she does.  Her other symptoms in addition to wild hallucinations, are dizziness, tiredness and disorientation; all symptoms of dehydration.

I began to put two and two together.  My mom doesn't like to drink water.  She sips little amounts, little bits that don't amount to much fluid intake.  It's been super hot.   She insists on sitting out in the sun, on the patio where she can watch the ceremonies or talk to her hallucinations, her friends.  The longer she sits outside, the more wild her hallucinations.  She refuses to drink anything except decaffeinated coffee.

Searching on Google for answers, I found a few links that convinced me that my mom could be hallucinating more, even after her Acupuncture treatments, because she's dehydrated.

Here are the links that I found and used to draw my conclusion as to why my mom has been having intense hallucinations since this heatwave hit the Northeast of the US.

http://allnurses.com/geriatric-nurses-ltc/geriatric-uti-hallucinations-492105.html

http://www.medicalnewstoday.com/articles/112365.php

http://www.healthy-water-best-filters.com/

My mom drank a big glass of water this morning.  She is still hallucinating.  I am sure she needs lots more water to rehydrate herself.  I am on a mission to convince her that water is her friend and drinking it daily will help her to make sense of the world around her.  I know I'm hopeful; there's nothing wrong with having hope, it's how cures are discovered.  

The question that I am working on answering is, can dehydration cause hallucinations?

Advice From a Care Giver to Care Givers

The day after my mom's birthday party in Maine gave us a very rough landing where my mom is concerned.  She was agitated from the moment she woke up.  Agitation that lasted nearly the entire day.

I sucked it up.  I reacted with sugar sweetness; a tone of voice that I purposefully kept soft and even.  I was able to remain calm in my mom's crazy storm.  My family, just seeing them at my mom's party, helped relieve all the stress that I had been carrying with the burdens that are part of my life these days.

My family, they are my only true friends; that's the lesson my dad taught over and over again.  I took him literally, I believed him.  Family is important, every person in a family has a role to play in each others lives.  It's up to us to decide if we want to ride the family roller coaster of love.  It's got it's ups and downs, just like any relationship.

Siblings.  They can make us mad but when push comes to shove, they are there for us.  I know.  I was one of those bitter Care Givers when it came to my family.  I didn't understand why I had been abandoned.  I didn't get why they were turning their backs; no one seemed to care when I was feeling as though I was in way over my head with this Care Giving nightmare.

I did cry a bunch.  I am sure I made my husband nuts because he didn't know how to fix the problem.  He's an only child and never had to face a battle with a sibling.  It can be ugly.  I was upset but I also missed everyone.  I was mad that I was missing the fun that I imagined everyone was having with out me.  I was experiencing demented thinking.

Dementia related illnesses are freaking scary.  I understand that more than most; "Hey, look at the wedding!" My mom will say out of the blue because in her mind, she's witnessing a wedding in our back yard.  There is no rhyme or reason with dementia; folks with dementia live in a different world.

I know how scary it must be for my family to see my mom when she is hallucinating.   They see dramatic changes in her mental health where I don't, it's a gradual change for me because I see her every day.  My goal was to help my mom to be more present so that my family wouldn't be so afraid to be near her.

This past weekend, a dream came true for me; my family got together and I could take pictures.  Lots of pictures and video that we can look at one day and remember how important each of us are to the other.  I love my family.  I'm grateful for family love because it gets me through the tough days with my mom.  I know I'm not alone.  My family is just a phone call away.

I love my sisters.  I love my brother.  I love my nephews, all of them, especially the baby.  He is funny as all get out and he's not even 2 yet.  He's a huge flirt, a child prodigy for flirting with pretty women.  He's got moves that made us all laugh out loud.

Today I feel renewed.  Ma is better since I told her that she will have a say with the home she eventually lives in.  She was worried that I was going to have her committed and put into a state run facility, a place that she didn't chose herself.    My mom wants to move.  She wants her own place.

I'm hoping that Acupuncture will allow her to live in an Assisted Living Apartment or Group Home, a place where she can feel that she has control of her life.  My mom will have friends where she lives and more people to help her.  I also believe that once my mom moves, she'll enjoy seeing me again.

My family is here for me.  They are now my emotional support system during the hardest times of our lives.  I opened my heart and let go of MY issues because they were akin to demented thinking.  My family, they have not forgotten about me, for this I am forever grateful.  

I do have advice for other Care Givers who have been estranged from their families over caring for a parent.  Don't give up on your family.  They do love you and your ailing parent, they do care... they just don't know what to do to help.

It's scary as all get out to see a parent insane with dementia.  We see the ailing parent day in and day out, the change we experience is gradual.  For our families, the more they stay away the harder it is for them to face the impending demise of our loved one.

My advice is do not judge.  Allow your family to help you.  Listen to their ideas.  Accept their help.  Empower your siblings by listening because they are detached from the situation and usually can think more clearly.

Communicate.  Talk.  Listen.  I stopped talking and listened.  I heard them, they heard me and now we are all working together.  Caring for a parent with dementia is not something someone should do alone.  It's horrible.  It will make you feel sick.  You will have resentments that are stupid and don't serve any good that you are doing.  It will make the patient agitated.

My advice... just let it all go and allow folks to help you.  Relinquish control and share the burden because your good health depends on it.

Boy, Didn't We Look Good?

My mom's birthday celebration was enjoyable.  I enjoyed it because I didn't have to keep an eye on my mom.  For me, I was able to take pictures of everyone, pictures that I can look at when I need to be reminded that I do have a family.  A family that I love.  I am grateful for my family.


Today I want to thank my family for bringing me the opportunity to find the happiness inside of myself.  I needed you all so badly and seeing you melted away all of my troubles associated with our mom.

Thank you.

My mom still doesn't care for me because she believes that I follow her around.  My mom wants her freedom, insisting that she wants her life back daily.  She is angry with me because of her inability to do things that she was once able to do.  Driving is still top on her list of things that she believes that she is capable.  She's not.  I made the mistake of telling her what she can not do instead of what she can do.


I made mistakes when I didn't validate her hallucinations.  I argued with her.  I attempted to bring her back to reality where everyone with a normal functioning brain reside.  The result?  She doesn't like me.  She doesn't smile much when she's with me.  I am viewed as her nursing home warden.  In my mom's mind, she believes that I am keeping her prisoner, taking control of her life, keeping her in my home against her will.


My mom wants to leave.  She doesn't want to stay in my home with my husband and me.  She seems jealous of my MIL who drives.  My mom views everything that is happening to her as unfair (which it is) but she also blames me.  My mom believes that if I just let her have her life back, she'll be able to do everything that she was once able to achieve.

I wish it were possible.

Unfortunately, the demented mind doesn't see it the way that the rest of the world views the mentally ill individual. It also has become apparent to me that the Care Giver is the first one that the patient blames.  It's typical.  I know that most people never look at themselves when there's a problem in their lives, we tend to look outside of ourselves.  It's never us.  My mom is in this place these days, it's not her that is the problem, it's me.


She's agitated with me a lot.  She wakes up and is pleasant toward me and then the next thing I know she's a colossal bitch, blaming me for something that makes no sense at all.


Because my mom views me as the problem, I believe we've gone beyond the point of making amends.  She loves me but also hates me.  It does hurt if I look at the person hating me as my mom.  I know I need to rise above her bullshit.  It's my greatest challenge in life these days, ignoring my mom's loathing for me.


Seeing my family yesterday, helped me to not take my mom's bullshit bait.  We were driving home from Maine last night; my mom began saying things that she knows push my buttons. Buttons that had been causing me to lash back out at her or break down in tears.  On the drive home, I was able to suck it up, keeping a soft even tone with no raised inflections in my voice.  


I found myself saying, "Oh, I am so sorry that you feel that way."  "I'm sorry."  Over and over I needed to remain calm and not get upset.  My mom seemed to want a fight.  I wouldn't give her one.


My mom was upset when we didn't go to my old house in Groveland.  It seemed to set her off when we turned into our driveway.  "I want to go home."  She began repeating.  


"I'll take you home tomorrow.  It's too dark, hot and humid.  Let's rest here tonight."  I said to her.


She was still testy.  Bitching about everything.  She even told me that she didn't like me.  Again I replied, "Oh, I am so sorry that you feel that way.  I'm here to help you, not to be your enemy.  I love you, Ma."


"No you don't!"  She snapped back.


"Ok, I don't.  I'll see you in the morning.  We'll wake up and you can sing, "Good morning!" and I can sing back, "Good morning!"  We'll have coffee and watch the news.  It will be a great day!"  My mother laughed and laughed.  Then she said, "I don't think so."


This morning, she woke up in an OK mood but once she realized that I was the one she doesn't like, she turned on me.  She is a bitch.  I need to suck it up.  I'm tired of eating shit but I know that I need to hang in here until I find a good place for my mom to live.  A place that is far away from me because I seem to annoy the living shit out of her.  Just having me breath the same air seems to make her skin crawl.


There are times my mom loves me, but these times are becoming fewer and fewer.  It's stressful to have someone project so much loathing hatred in my direction.  I want to run away.  I have begun to pray that her number is called and the bus comes for her.  I want to be emancipated from the insanity.


Calm.  I need to remain calm.  I need to get away for an extended vacation.  I need to get away from all Care Giving, even the little bit that I do for my MIL.  I don't want to Care Give anymore.  I'm burned out and the thought of no happy ending has taken up residence in my mind.


My mom won't get better.  She'll decline.  It will only get worse for me.  I'm on the fast track to have her placed in a home where she has more people around her, not just me.  


Yesterday, was the final party.  It is probably the last time we'll all be together with Ma.  The drive to Maine is way too much.  It always twangs her and makes her angry when we come home.  


Last night my husband made an observation, every time my mom comes home from Maine, she thinks she's going to Groveland.  When we don't go to the old house, she gets agitated because it's where she had freedom.  She lost her mind when we moved her; she associates this place as a trap, a prison.

I am grateful for my family and their support.   I'd be lost with out them, all of them, especially my husband.  My dream had come true yesterday.  I wanted my family to get to spend some time with our mom, a time where I could take pictures and movies.  Pictures and movies that we can look at one day down the road and say, "Boy, didn't we look good?"

Seven and A Half Hours ...

... that's how long it takes for Acupuncture to begin working for my mom.

It was an intense ride yesterday afternoon with Lewy taking over, my mom was gone.  The person in front of me looked like my mom, same voice as my mom, but she didn't speak like my mom.

It was not a good day for me as my mom's Care Giver, she "couldn't stay in the same room" with me.  Every time she gets totally insane with directed anger toward me for no clear reason, it freaks me out.  My only recourse is to strap myself in and hang on until the storm passes.

My mom has had 3 Acupuncture Treatments, 2 this past week, one on Monday and another on Friday (yesterday.)  She was agitated going to the appointment, mostly because I told her that she had to do it and she had to use her own money.  During one of my mom's clear moments I explained to her that her "rent" for living here with us is to use her Social Security check every month to pay for her health treatments and supplements.  Yesterday, she forgot about this and kept telling me that she couldn't afford the Acupuncture.  I told her that she couldn't afford not to have the treatments.  She had the Acupuncture.

The needle that went into the point on her upper lip, hurt.  She told the doctor that it hurt and he put in a new needle.  This one hurt too but she didn't tell Dr. Barton, she toughed it out.  She should have told him, he would have removed it and put one in until it didn't hurt.

I've been thinking about pain in the pressure point areas; makes me wonder if the pain is indicative to the area's energy being clogged.  I wonder if it was the warning sign that Lewy was pissed and the Acupuncture is working.

Yesterday afternoon reminded me of a sort of Exorcism where Acupuncture was the Priest and my mom's Lewy Bodies was the evil entity being exorcised.

The only Exorcism that I had seen was the one in the movie, "The Exorcist" with Linda Blair as the soul who was taken over by the devil.  If my mom's head began spinning and projectile vomiting green pea soup looking stuff, I surely would have called 911.

Seven and a half hours is how long it seems to take for the Acupuncture treatment to relax my mom and change her attitude toward me.  Like Dr. Jekyl and Mr. Hyde, my mom changes, she goes from super bitch mom to a sweet old lady.  

Today my mom woke up and said, "I am so happy."  She has been telling me about her dreams, dreams that at one time she'd tell me really happened.  In her dreams last night she had a new apartment, her own place that was built by her "people."

Happy Birthday Ma!  Today you are 81.

We'll celebrate with family and she'll get to see her Great Grandson.  I'm excited for today because yesterday I didn't think we would be able to go.  I thought I was going to miss out seeing my family, all of them together in one place.  Yesterday my mom didn't want to drive with me to her party.  Today however, she's in a good place, she's happy and looking forward to driving with me to her party.

Today will be a day to remember and all it took was seven and a half hours.

Care Giving For the Demented Is Like Playing Russian Roulette

I think my mom has a UTI.  She is disagreeable.  She doesn't like me.  She doesn't know who I am.  She won't eat.  She thinks I'm keeping her prisoner.  

"I want to talk to my family.  Please! Let me talk to my family."  My mom begged me this afternoon.

I didn't respond very well to this, mostly because it hurt my feelings.  I couldn't rise above her insanity, even though I know it's not my mom talking.  She really doesn't know who I am.  To her, I am the warden in the Nursing Home where she thinks she lives.   You know, maybe this is the sign that I have been looking for... she needs to be in a home.  

Today, she doesn't know that she is living in my home with me, the same place she's lived for the past two and a half years.  My mom is delusional.

This morning we dropped off a urine sample at the clinic.  I was told that if we call at 1:30 we'd have the results and the doctor would prescribe an antibiotic.  I waited for 1:30.  It was a very long wait where every minute seemed like an hour.

During my wait, my mom talked and talked.  She was upset.  She wants to go home.  She's carrying her brother Auggie's picture around with her, conversing with him.   I could only hear her side.  It was similar to overhearing someone talk on the telephone.  It was wild. 

I called the hospital.  The results were not in yet.  Oh boy.  I really need antibiotics for my mom.  I know she has a UTI because of her behavior, it's difficult.  The nurse told me that the results were still pending and we wouldn't know until Monday, 3 days away.

Uh oh.  

I told the nurse about my mom's birthday and our family gathering that we have planned.  A gathering that she is looking forward to attending.  The nurse put me on hold.  She came back and told me that we'd have to wait until Monday.  

While the nurse was on the phone telling me that we wouldn't have the results in time for the weekend, my mom got off her chair and stood next to me.  

Leaning in toward the phone, she began hollering, "Help me!  I want to see my family.  She is lying.  Don't believe her.  Help me!  I don't want to be here.  I want to go home."  My mom went on and on like someone who is in a nursing home.

My mom believes that she is in a nursing home and I am keeping her prisoner.  She believes the call that I had made to the hospital to check her results, was to "turn her in."  She thinks the men in white coats are coming for her.  Oh, how I wish!

The nurse was great; she ignored my mom's screams.  Instead she took our information and is having the doctor call in a prescription for antibiotics.  

I hung up the phone; my mother was pissed, no she was furious.  I hate it when my mother's mad at me, it's always sucked.  In her demented state, her wrath is 100 times worse.  She hasn't been this mad with me since that time she caught me smoking a joint under the peach tree with my sister and brother... I was 19.

I thought quick.

"Would you like me to call Donna for you?"  I asked her in a calm voice.

"Yes."  She said.

I dialed my sister in work and had my mom talk to her.  My mom told her that she doesn't like the nursing home that she's in because "the lady" (me) won't let her go out.  It's nearly 100 fucking degrees outside and humid, not a good time for a senior to sit in the sun.  My mom doesn't know enough to come in out of the sun and or heat.  

Mom doesn't know me today.  I couldn't feel worse.   I know that Care Giving is hard; I know that we can't take things personally, but I still do.  My mom's voice haunts me, hearing over and over again words of rejection...

"You are not my daughter.  You are not my family!  I want my family.  You are not keeping me from seeing my family tomorrow.  I can't stand the sight of you."  

I know it's time for her to go because she is developing an aversion toward me.  She doesn't trust me.  She won't listen to me.  She believes that I'm a bad person who wants to hurt her.  

She is watching The People's Court with me and talking at the screen.  She got mad and blamed me because they went to commercial break.  She is into the commercial, ready to dial the number for a free consultation about debt consolidation.  Like a shot with no warning, she barked, "I can't even stay in the same room with you!" as she stormed out of the room.  

A minute later she was back.  She sat on the edge of her chair, watching TV as though she's there and interacting with the people.  She is clearly upset with me; she does not like the sight of me.  I don't know how I can be her Care Giver if she hates me so much.  I really don't know how it happened.  I am going to take a guess that she believes I'm the enemy because I took control of her life.  I had to.  

Last night she didn't even remember how to take her shirt off and put on her nightgown.  I had to help her.  I still don't know how I got her to let me assist her.  

My mom’s dementia is like playing Russian roulette, you never know if there’s a bullet in the chamber of the gun being held to your head.