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.

30 June 2010

A Whirlwind of a Day

My day off yesterday was fabulous.  It went fast, it was a whirlwind of a day.  I had a dollar a minute massage, met my husband for a lunch date, went to K-Mart and bought discounted flowers, lots of them for under $7!  From there I drove around listening to the radio in my truck with the windows open wide.  I sang out loud and didn't care.

I also saw what I thought was a bottle bomb on the side of the street.  I called the cops.  I drove by the bottle a couple of hours later and it was still on the curb.  I do hope it isn't one of those bombs that I heard about, you can read about it here on Snopes - bottle bomb warning.

The respite worker arrived on time and my mom was ready to head out the door, she wanted to go to Market Basket.

My mom is crafty in her demented state. She wants to eat "real food", food that got her sick in the first place.  Processed foods, sugary foods, food that is poison to her system.

Our respite angel told me that my mom tried to buy cookies and ice cream, cookies and ice cream that I have not approved because of the chemical ingredients.  Ingredients that cause her to be super demented like Uncle Al.

I should have given the respite worker specific instructions about food for my mom.  I should have known that my mom would have tried to get away with eating the food that I don't let her eat.

The respite worker took my mom out for an ice cream.  She noticed immediately that it wasn't the right thing to feed my mom, my mom became lethargic.  It got worse after my relief left and I was back on duty.

My mom couldn't eat dinner.  She couldn't lift her fork, she didn't know how to use it.  It was frightening.  I was ready to call 911.  I checked her blood pressure and blood sugar, both were high.  She was due for her high blood pressure medicine so I gave it to her.  I made her a cup of ginger tea with 2 drops of fenugreek.  I had her lay in bed and relax.  I gave her Reiki and spoke calm words.

My mom began to feel better as her blood pressure and blood sugar came down to the normal range.  She ate dinner and was back to her normal state of mind.

What I learned is that food matters with Lewy Body Dementia patients.  If you feed them poison it will cause them to have bad behaviors or become super disoriented.

Today, Jay and I go to the eye doctor... my mom will stay home with her Visiting Angel.

29 June 2010

Everything Is NO!

My mom is so disagreeable these days, everything is NO.  I ask her a question and the answer is NO, even if she wants it, she says NO.

"Ma, want to come in the pool with me?"  I ask

"No."  My mom answers.

"Ma, would you help me make dinner by breaking the ends off these string beans?"  I ask my mom.

"No."  My mom answers.

It's always NO.

Why?  Why is she so disagreeable?

I looked on the internet for an answer.  Understanding what causes these behaviors with my mom's illness is key to ending them just as quickly as they began.  My mom is lashing out because she is losing the feeling of control over her life.  My mom uses the word NO in order to gain control of her life, even if it means saying NO to something that she really wants.

What do I do when she never wants to do anything that I suggest?  Sitting idle is bad news, she hallucinates or becomes delusional causing unwanted behaviors.

I need help, how do I turn everything is NO into YES?  How do I get my ward to do things that will create an illusion that she is still in control of her life?  How do I ask the questions so that the idea sounds like it came from her and not me?

My mom is scared and she's lashing out.  She realizes that she can not do things on her own anymore and it is pissing her off, she is mad and beginning to blame me for her inabilities.  Should I stop helping her?  I don't know.

Patience is something that I only read about these days;  I'm totally burned out from Care Giving.  The Visiting Angels are sending a human angel today, she'll spend 5 hours with my mom so that I can have time to help myself.

What will I do with my gift of time from my sister and her husband?  Not sure but I can assure you that whatever I do will bring me happiness.

28 June 2010

Phosphatidyl Choline An Alternative to the Exelon Patch

 Phosphatidyl Choline is amazing.  Our Naturopath prescribed a tablespoon of the granules every day in order to help my mom's brain function.  She had been taking it every morning, a tablespoon in her oatmeal.  Her days were not as confusing for her and she hallucinated much less.

I ran out of PC.  I needed to place the order online but life happened and I forgot.  My mom became more insane.  It became more difficult to remember to order the choline.  I had no idea how beneficial it is for her or I may have been better at re-ordering.

It's all behind us, not much that I can do about what I didn't do that caused us to have a run in with Lewy and the insanity that ensued when the P. Choline was eliminated from my mom's diet.  I did learn and hope that I can help others one day through our experiences with natural remedies for Lewy Bodies Dementia and Alzheimer's.

My mom has been taking Choline again, every day one tablespoon in her oatmeal.  I make it in the microwave.  1/4 cup of organic old fashioned oats that we get from Trader Joe's, 1 tablespoon of Phosphyltidal Choline; I found some at GNC so that I don't have to worry about ordering in advance and mail delivery. 1/2 cup of water, 1/2 cup of blueberries.  

I put the oats and choline in a bowl and mix it in by shaking the bowl a little back and forth sideways.  I add the water and cook on high power for 1 minute 30 seconds.  I stir it around and if it's still too watery, I microwave it for another 20 seconds.  I add the blueberries and microwave for another 15 seconds to heat the blueberries.  I add 1 teaspoon of coconut oil and top it off with a little non-fat lactaid milk (milk with lactase enzyme) or coconut milk.

It's been 3 days since my mom's been back on the choline.  It's been 3 days where I have not had to "look" at whatever she was seeing.  She hasn't seen my dad.  She hasn't had sick people in her bed or kids running around her room.  My mom will sit in her chair in her room again, previously there was always someone sitting in it.  She doesn't see my dad either.  She doesn't want to write him email notes, she knows that she's alive and that he's dead.  She told me that she wants to live while she's alive and when she's dead then she'll be dead.  Can't argue with that logic.

Why does Phosphatidyl Choline work?  From what I've read and understand about the topic, cells use Phosphatidyl Choline to produce Aceytlcholine.  The cells of folks with Alzheimer's type illnesses, their brain cells leak the Aceytlcholine, bringing on all the crazy behaviors that Care Givers witness.  The addition of PC into the diet helps to slow the effects of the leaking cells.  Here's the article that I read that describes the benefits of Phosphatidyl Choline - The Nutrient Phosphatidylcholine (PC)

Phosphatidyl Choline is an alternative to the Exelon Patch, it cuts back my mom's hallucinations a lot.  My mom is less agitated and confused.  I hope this lasts because when she hallucinates, it freaks every one out and makes it really uncomfortable to be around our mom.  I believe the Phosphatidylcholine will help my mom to be more present in this world, making it easier for family and friends to spend time with her.  Yay!

27 June 2010

Send Me All Angels

Yesterday morning started off bad. I barely had my eyes open at 5:30 AM when my mom suddenly appeared, "Ta Da!" My mom greeted me, fully dressed and carrying her purse as though she was ready to go out shopping.

I was not in the mood to be awake, let alone immediately "on duty" even before I had a sip of coffee.  My mom was not doing anything wrong, except that she was awake and ready to start moving before I was ready.

I started to cry.

My mom didn't know what was wrong, she was upset because I was crying, she didn't know why.  I didn't either, the tears just poured out of my eyes.  My mom sat in her chair and began praying aloud, "Hail Mary, full of grace, the Lord is with thee...."  She got up and went to her room as she walked down the hall praying.  I cried.  I cried even more when I heard that I had scared my mom with my tears.

My mom was afraid that the men in the white coats would come and take me away like they did to her mother and sister.  My mom was a young teenager when her mom and sister were committed to a mental institution.  She always feared this would happen to one of her children, she feared it was happening to me.  I felt like it was happening to me, my insides were shaking and the rash on my arm was burning in pain from the brief relief caused by my scratching.  

Tuesday.  All I needed to do was hang on until Tuesday when the Visiting Angel was coming to give me a break.  I couldn't.  I didn't have the strength.  My well of stamina was dry, I was sunk.  I cried.  My mom prayed to BVM (Blessed Virgin Mary).

My mom gave me space.  She had enough wits about her to leave me alone, she was having a good day and I was on the verge of sabotaging it with my feeling of hopelessness.  A feeling that my mom was feeling because of me!  Thank God for BVM.

I sat and calmed myself down and immediately thought of my Auntie Flo's Rosary Beads.  Beads that I had just found and had the thought, "Hmmmm, I'll give the beads to Ma and have her say the Rosary when she's feeling scared or upset."

I gave my mom her sister's Rosary Beads, beautiful crystal beads with a silver chain holding them all together. My mom grasped the beads and her eyes got teary, she thanked me with a quivering lower lip and then she gave me a hug and said, "Everything will be OK Susie."  My mom was back for a brief moment.  It was nice to have my mom hug me.

Knowing how my mom loses things, I put the beads around her neck.  She sat on the patio, holding her beads while she prayed to my favorite Catholic Saint, the Blessed Virgin Mary.

I wrote my blog post while she was outside.  I wrote to everyone, including my sister Donna.  I needed to understand why she abandoned me; it bothered me to think that I did something wrong to piss her off.  I cried.  I missed my sister.  I needed her wicked bad.

I cried and prayed for a miracle.  I prayed for my own angel to swoop in and come to my aid.  I couldn't wait until Tuesday.

Send Me All Angels!

Donna replied to my note, a short note, "I'll be there at 11am.  I hope you can Brian can go out."  I cried.  I bawled my eyes out.  My sister, my sister Donna, heard my cry.  She was coming to help me.  I was excited, but I cried.  I couldn't stop.  It was like the flood gates were opened, my tears flowed uncontrollably.

I pulled myself together so that I could tell my mom that she was going out.  Mom was sitting on the patio, holding her sister's Rosary Beads when I walked down the stairs to tell her the good news.  "Donna's coming!  She'll be here soon.  Let me fix your hair."

I set my mom's hair so that it wouldn't look so wild.  I know that she likes to look nice when she goes out and if her hair is messy, it affects her behaviors.  My mom was happy to hear that Donna was coming.

The excitement that I was getting a break, caused me to pace the back yard, waiting for my relief to arrive.

I was at the back yard gate when I saw it open.  It was my sister Donna.  I hugged her.  I cried.  I sobbed.  I couldn't believe my eyes.  She looked like an angel with her big bright shiny face.  My sister, she came, she came to help me.  I was overwhelmed with joy and love, my family... they haven't forgotten about me!

Off my mom went with Donna, I had 5 hours to myself.  Brian and I went to our favorite Chinese Restaurant.  Our favorite waiter served us, he knows what soup I like and he always knows that I need a Mai Tai as soon as we are seated; he knows that I'm my mom's care giver.  Joe the waiter, served me.  Even though we were getting the buffet, he still brought us our soup and dry noodles, followed by a strong Mai Tai with a string of maraschino cherries on a plastic toothpick.  I know that these cherries are not good for me but I love them and only have them every so often in a strong Mai Tai.

I had 3 Mai Tai's.  I got bombed.  It felt good to be drunk at 1pm and strolling the local hardware store with my husband.  O'Connor's Hardware is the best, it reminds me of the type of stores from my childhood.  The place brings me back to a happier time.

My husband and me, we had a great little date yesterday.  Brian, he is the love of my life and always has a way of brightening my day when I need it the most.  I'm grateful to have a man like him as my partner in life.

Brian is funny, he knows how to make me laugh.  He is a born comedian who is very smart... hey, he married me didn't he?!

Donna gave me a CD when she walked through the gate.  Kris Allen's CD, the winner of American Idol last year.

Immediately I ripped it into my media center.  The first song that started to play was "Send Me All Angels."  I busted out crying as I listened to the song.  The words of the song touched me, it was as though the answer to my prayers were answered and the song, "Send Me All Angels" was the sign to tell me that help is here and more is coming.

I love angels.  I love BVM.  I love my family, they are my angels.  Thank you all for coming to my rescue.  The rash on my arm... well, it's going away!  It doesn't itch as much today and it's not as red.  My angels, all of you are helping me.  Thank you for saving me from despair.

26 June 2010

A Cry For Help

Caring for a crazy person will make a person crazy if the Care Giver doesn't get a break away to swim in the pool of reality.

Emotions matter.  The Care Giver is leader and needs even emotions, happy emotions that the patient feels and mimics.  The same is true for unhappy emotions, stress, tears and nerves that are shot; all ingredients to form a perfect storm in the demented mind of a patient with Lewy Bodies Dementia.

The cure for the Care Giver?  Respite... breaks away to recharge.  Even a few hours does wonders for a Care Giver, a few hours that are often unavailable.

How can you help a Care Giver?  

First, I'd read up on Alzheimer's and understand what it is, educate yourselves.  Putting your head in the sand and thinking, "Oh, everything will work out, it's going to be OK." and then doing NOTHING will not make everything work out and be OK.  

If you really care about the person with the mental illness and the Care Giver, you will educate yourself so that you can do something, something that will help. After all, we all want to help but just don't know how.

A very good book is "The 36-Hour Day" which describes everything and helps the reader to understand how regular logic doesn't work.  It's why I go along with Ma's hallucinations... why I write love letters to heaven, why I have banishing rituals, why I call Dream Master... read the book and you will understand why I am caring for her.  Believe it or not, being home with help is the best thing that we can do for our mom.

The purpose of this post is to tell my family and friends how they can help us.  I need help, this is my cry for help.  Please, help me.  I cannot do this alone, 24 x 7, 365 days a year.  I've said it before, I'll say it again, Care Giving without any help is a terrible prison sentence where my only crime is caring about my mother.

Once you are educated about the debilitating mental disease of Alzheimer's it's easier to face.  The potential is there for all of us to develop the crazy gene, a gene that my mom often worried about for herself and her children.  Now, after being my mom's Care Giver, do I understand my mom's fear about the crazy gene... it's pretty darn crazy!  So much so that it's beginning to drive me completely mad.  Care giving with out any time off is torturous for one's soul, sucking up life like weeds in a garden.

My mom's condition makes her believe that she's capable of living her life as she once did, moving about freely, shopping and making sound decisions.  She hallucinates and tends to hallucinate a lot more when she's bored or upset.

Upsets in her world trigger behaviors that are annoying, behaviors that are easy to manage when the Carer is rested.   I am not rested and I fear that I am becoming a shitty Care Giver.  I lose my patience more easily and have a much more difficult time controlling my sad emotions.  I cry a lot.

Things that upset my mom are numerous, but the one thing that upsets her the most, making care giving 10 times more difficult, is when her kids don't call or visit.  She wants her family around her and feels abandoned.   She lashes out at me, the Care Giver when her family doesn't visit, often she blames me for their lack of attention.  It's always my fault, even when it isn't.  It's hard on me.  I don't know what to say.  Do you care?  I don't have the answers to Ma's questions.

I believe that my mom roams around the yard looking for her family.  I've noticed that she hallucinates a lot more when she misses her family.  She is always looking for someone and it doesn't matter if they are dead or alive, she will look.  She's been asking to "go home" for weeks, a question that she stopped asking for awhile when she was happy, feeling safe and secure.  Now, she's feeling insecure and unhappy because the only one she sees is me.  She's sick of me... actually, she's sick of all 3 of me.

I need help, physical help.  I need to know that my family hasn't abandoned me completely.  Please, please help me.

The plan is to put my mom in a nursing home.  I just can't do it anymore without help, physical and financial help is desperately needed.  I'm in a catch-22 situation.  I need someone to come so that I can find more respite services.  I need time to research nursing homes, visiting them during the day and night to see how the patients are treated.  I need a job to pay for all of this but can't get a job because I can't leave my mom alone.

My mom has no money, just her monthly Social Security which is $75 too much for her to receive free healthcare from the state of Massachusetts.  I've been supporting my mom since 1998.  I always had a good job and could afford caring for her, but now I need my family to help.  I need time away so that I can get a job.  I'm capable of making a lot of money; money that would help me to help myself.  I'm stuck in a ditch.

I sound like a broken record, skipping over the scratch in my mental vinyl every time that I think about how I can get out of this slow death sentence which is fueled by stress.

Here's my list of ideas as to how you can help me to get my life back ...

1.)  Call Ma, make it a regular call, schedule it into your busy days.  Make it the same day and time every week.  Regularity is very important with the demented mind.

2.) Visit.  Make the visits regular visits, even if it's one day a month, make it the same day every month so that Ma has something to look forward to; she looks forward to family visits.  The family visits make her very happy and it makes it easier for me to take care of her.

3.)  Buy me respite.  If you can't visit or call for whatever reason, I understand it - well, sort of.  Confronting the illness something that you need to deal with on your own; Our family has Alzheimer's, not just Ma... when one person has it, we all have it.  A great way to get over the guilt of not helping me is to buy me some time, pay for someone to come and take the burden off my shoulders for a few hours.  It will help me to help myself and you will feel good because you are taking on some of the responsibility.  Ma is all of our responsibility if she's living here with me or in a home.

4.)  Send cards or short letters.  Send "Fun Mail."  Ma loves getting mail, who doesn't?!  Let her know that you are thinking of her.  She especially loved it when Donna mailed her jewelry made from inexpensive plastic beads.  She wears these necklaces all the time, sometimes all at the same time.

5.)  Send her pictures.  Put together a memory book of better times, pictures that will trigger happy memories.  Better yet, if you can, make the book, bring it to her and then look at it with her.  The joy that you will bring her will make you feel so good about yourself.  It is a way to get over the guilt of not knowing what to do.

6.)  Take her to the hair dresser or shopping.  She loves going out.  Take her for a drive.

7.)  Swimming - my mom loves to swim.  If you have a pool, invite her over for a few hours.  I'll even pack a lunch for her and everyone else at your house.  Mom is a lot of fun when she's happy.  She'll be happy when she sees you.  If you don't have a pool, come to my house.  I'll make lunch for everyone and then I'll use the time to recharge.  Recharging is important for being a good carer.

8.)  Play music with her and sing-a-long.

9.)  Most important - spend time with her, visit with her and hug her a lot.  Hugs help her to feel secure after you've left and it keeps her from running away, roaming the streets looking for you.  Wandering behaviors are super stressful for me because I fear that she'll get hurt.

25 June 2010

Thank God for Angels, Especially the Living Kind

The Visiting Angels came yesterday, they arrived on time with bright smiling faces.  It was our first meeting where a Respite Care Giver met my mom and me.

All morning I had anticipated the Visiting Angels arrival, doing all that I could to serve my mom food and drinks that would keep her on an even keel.  My goal:  keep her happy and don't rock her boat.

Knowing that respite is a bit closer for me, I was able to handle all the nonsense that comes with my mom's illness.  I was more understanding, like I am when I'm rested.

We went in the pool in the morning, well my mom went in the pool, I weeded the garden.  Around lunch time I got in the pool and mom got out and told me that she was ready for lunch.  "Hurry up, I'm hungry!  What are you making for lunch?!"  She asked like a little kid.

I had no idea what I would make because I had not gone food shopping; the fridge had slim pickings.  While I took an inventory of the fridge for potential ingredients that I could transform into lunch, my mom went to her room to change out of her bathing suit.

Mom came back into the kitchen dressed in just a bathrobe, not a stitch of clothing under the robe.  It was now 12:30 PM and the Visiting Angels were arriving in 30 minutes.  My mom needed to eat lunch and then get dressed within 30 minutes.  Rushing her could have caused behavior issues so I let her sit in her robe and eat her lunch.

The clock was ticking.  My mom seemed to be eating especially slow.  The rash on my arm began itching the more I stressed about her not being dressed when the respite folks arrived.  I held my tongue, knowing not to say something that would trigger difficult behaviors.

Finally, at 1 PM my mom finished her lunch and she went to her room to get dressed.  The sound of the door bell sent my mind reeling, my mom wasn't dressed, she would need my help and we had visitors.  I know that rushing my mom could send her off on a tirade; I held back and let her take her time.

My mom came out of her room, still in her robe.  She told me that she needed my help but I think she really wanted to see our visitors.  Once she saw the 2 women that had just arrived, my mom ran off to her room to get dressed.

I sat with the women and we chatted a little about my mom.  My mom came back, still only dressed in her bathrobe.

"Susie, there's a sick lady in my bed.  Can you get her out of here?"  My mom asked.

"Sure.  I'll call Dream Master and have him take care of it.  Come on, let's use your special phone in your room.  Excuse me."  I excused myself from my guests and hurried off to call Dream Master.

"Hello Dream Master?  This is Sue.   There's some sick lady here bugging my mom, can you make sure that she is out of here?  Thank you Dream Master, I'll tell her.  OK.  Thanks a million."  I spoke into the phone while my mom watched on attentively.

I told my mom that Dream Master will take care of the troubling entity and she was safe to change her cloths so that she could visit with our guests.

A few minutes later my mom came out to the room where I was sitting with the Visiting Angels.  She had gotten dressed and stood at the doorway doing a little glamor pose.  My mom talked a little and then ran off to her room, "I'll be right back."  She would say and a few minutes later she came back dressed in a different top.

Finally, she was able to sit with us.  She likes her new buddy.  My mom brought her in to her room to show her pictures of herself when she was younger and beautiful.  She also showed her a picture of herself when she was pregnant with my brother Marty and her High School yearbook from 1947.

The respite care giver was awesome, she knew how to talk to my mom.  My mom quickly warmed up to her and then my mom took her for a walk out in the back yard.  In the yard, the respite worker got to meet my family, all of them, both living and dead.

My mom likes the Visiting Angels.  Tuesday she's coming at 10 am for 5 hours.  She is an energetic care giver, one who will swim with my mom or take her out to a store for a little shopping spree.  I have a break coming, it's scheduled!

Thank God for angels, especially the living kind.

24 June 2010

Excited and Nervous

Today the Visiting Angels are coming to meet my mom and me.  I'm excited and nervous.  My mom doesn't like people, she is anti-social and has been for as long as I can remember.  My mom doesn't make friends easily because she's shy.  My mom lacks social skills which makes me nervous.

I'm excited because the visits from the Visiting Angel will give me the break that I have been dreaming about for a very long time.  I will be able to get my dollar a minute massage at the mall, shop by myself and even better, possibly get to go and play a game of golf with my husband.  We love golf and often reminisce about the days before we were married, days when we had freedom to enjoy the little things that life has to offer.  I'm excited with the idea that regular respite is possible and it is happening!

I'm nervous because I don't know how my mom is going to react to her respite Care Giver.  If she doesn't like the person, she will surely let me know about it.  Typically, she'll lash out at me through behaviors that are annoying if she doesn't like something that I'm "making" her do.

I am excited and nervous.  I'm anxious for the angels to arrive and offer their help.  I pray that my mom is agreeable and likes her new buddy.  Change to her routine is always challenging, often it brings out the worst in my mom which makes care giving unbearable.

My sister Ann is coming to my rescue.  I'm grateful to have someone from my family to walk with as Lewy wins the war over my mom's mind and body.   It's a scary illness, mostly because we are all at risk.  It can happen to me, it could happen to anyone in my family or yours.  I'm grateful that I don't have to walk the path alone with my mom, Thank God, it's way too hard these days.

Today however, I'm excited and nervous with anticipation of having time to do things that bring me inner peace and happiness.  I feel like a kid the night before a field trip to  Benson's Wild Animal Farm... excited!

23 June 2010

"I Want a Different Mother!"

Yesterday was a difficult day with my mom.  She has been mad and upset since we left the Neurologists office Monday morning.  She is upset because she is declining and I'm not able to cure her.

My mom, she doesn't forget.  She doesn't have the Alzheimer's where she forgets events, she forgets words that help her to communicate.

Yesterday she called me her mother, "I want a different mother!" She yelled at me when I was attempting to convince her to swim in the pool.  She never swam in the pool.

She did sit around with two bathing suits on.  A big sized 24 suit, one that she loved to wear when she was 100 pounds heavier.  It just wasn't working for her yesterday, not with a 2nd bathing suit top and jeans.

I have a rash on my arm; I think it's from stress.  I had a similar rash on my arm when I was completing my senior year in college back in 1983 when I was 24.  I slept only 4 hours a day, filling the other 20 hours with work, school and an internship.  My nerves were shot and my skin broke out in a blistery rash, one that hurt and itched.    Once school ended, the rash disappeared.

Now, 25 years later the rash is back because of the stress in my life.  I am tired.  I need to rest but don't have the luxury to just stop and take a nap or better, meditate.  My mom needs constant attention because she is starting to wander.  She wanders when she's upset, always looking for home.

Yesterday, she was looking for her brother Al, she told me that she was going to find him and live with him in his house.  She denies that he himself is in a nursing home facility.  No arguing with her, it gets no where.

It was a difficult day because my mom was in an "I hate Sue" mood.  It was awful having her nastiness thrown at me all day.  Nothing could convince her to turn her frown upside down and smile.  I was ready to have her committed to a nursing home because her adolescent behaviors were unstoppable.  Nothing worked.

I called my sister Ann and told her that I need her help.  I told her that I'm done caring for our mom because it's such a grind.  I'm exhausted.  I have a painful and itchy rash.  My spirit is broken.  Respite is coming, only a couple of days to get through.

Ann is becoming my voice of reason and suggested that we give respite a chance.  The time will help us to find a good home for our mom, one that will help her where I'm not able.

My mom took off yesterday ... twice.  The first time I didn't notice that she was gone because she came back on her own.  The second time that she took off I did notice and went out looking for her in the car.

I found her walking back toward the house, dressed in her 2 bathing suits, jeans, a sweater, with her straw hat on her head, as she carried her bathrobe and a bra.  She definitely looked crazy.  She was mad.  She came back to the house and sat on the front stairs.

I got her to come inside somehow.  She changed into her night gown and then sat on the patio for 2 hours, crying and frowning.  I apologized.  It didn't work.

Then I remembered the homeopathic remedy that Dr. Barton sent us home with last week.  I gave her a little and she came inside.  She was in a better mood.  The remedy is amazing, it snaps her out of her anger fast.  She hugged me and was pleasant.  I'm always grateful when she goes to sleep in peace because then she sleeps through the night.

Last night she slept through the night and woke up in a decent mood today.  I hope it continues; I could definitely use a break from her anger.

22 June 2010

The Lewy Roller Coaster

Our day yesterday had lots of shifts and changes, unexpected surprises too, both good and bad.

My mom saw the Neurologist yesterday and she was retested.  She's declined significantly.  In November 2009 my mom scored 14 out of 30.  Yesterday she scored 7 out of 30 answers correct.  She felt stupid.  She told me that she knew the answers but she just couldn't find the right word.  She hates the test.

"I don't want to do that test anymore!" My mom exclaimed as soon as she got in the car.

My day went down hill fast.  She was mad.  In the doctor's office she even looked at me and mouthed, "Wait till you get home."  The doctor saw and that's when he suggested Exelon patch.  My mom shook her head no, she didn't want it.

I ran out of Phosphyltidal Choline.   The doctor told me that Exelon works similarly to it, I'll get my mom back on the choline and see if it tones down her behaviors.

My mom was agitated yesterday, no... she was mad.  She blames me for her trouble.  She told the doctor that I keep her captive.  She did not like the doctor's idea of going to Day Care, she was shaking her head no as she said, 'I won't go!"

The doctor and I ignored her and he continued to give me options for respite.  I told him that I've only had 4 hours off in the last 4 months.  I also told him that we want to keep my mom home but that I need help.  He is getting us hooked up with help through the hospital.  Yay!  A Social Worker who can help us to navigate the system, get my mom the care that she needs and the regularly schedule respite breaks that I need.

Mom was so mad that she didn't want to go in the pool.  None of her bathing suits were good enough.  None of mine were good enough either.  Bitch, bitch, bitch.  I got pissed and lost my patience.  I raised my voice, I just couldn't handle her negative tone, the NO's blew any resemblance of calm that I was mustering up.

I figured I'd go in the pool and to not let my mom's insanity affect me.  I saw my mom in the back yard, so I figured she'd be fine for a few minutes while I put on my suit.  I was wrong.  My mom took off.  She opened the back gate and walked away in heavy jeans and a sweater.

My husband took the day off yesterday so that I could call respite services and arrange to get some help.  We both got in the car and went out looking for my mom.  Our street is long and winding so we headed up the street, guessing that my mom began her journey turning left out of the yard.  She seems to always turn left.

We drove slowly up the street, looking in yards for my mom.  I began getting nervous.  I prayed a Hail Mary prayer, asking her to find her for us.  Just as I turned a corner, there was my mom, standing under the shade of a tree.  We pulled up and my husband got out of the car and asked her how she was doing.

"Oh, I'm so glad you got my call."  My mom said to me when she saw me.  She got in the car.

"I'm not going to your house.  I want to go home.  No wonder Brian is so quiet back there, I'd be quiet too.  I don't want you to come in my house."  My mom rambled on and on.

I didn't know what to do.  I turned and looked at my husband in the backseat and he didn't know what to do either.  Then he started to talk to my mom, he knows that my mom loves men and does whatever they say.  He was getting through to her, she started talking about her shoes.  She believes her shoes were stolen, even though we put them in her closet on the special shelves designed to hold shoes before we went to the doctor.

I dropped them off in the driveway.  My mom thanked me for the ride and went inside with my husband as I drove away.  I thought I'd try the old switching my shirt routine to get her to like me again.  My husband had her calmed down in her room and set her up with some sitcoms.  We left her alone to rest.

We went in the pool, my husband and me.  It was awesome.  No Ma asking questions and interrupting conversations that I'm having with my husband.  We got to have a conversation like a normal couple.  It was awesome.  It reminded me of our days at my old house where we would float in the pool and talk about different subjects.

It was a beautiful pool day and I knew that I needed to get my mom in the pool.  I went up to her room and apologized.  I know that even if I didn't do anything, if I apologize she'll come around.

"I'm sorry Ma.  I was wrong for getting upset with you.  Will you forgive me?"  I said very humbly as I continued to coax her to come to the pool.  "Why don't you come in the pool.  Here's a nice suit that you can wear.  I'll leave it here and you can make your own decision.  The pool water is perfect and I don't want you to miss it."

Care Givers we need to get used to eating crow, something that is really tough to do as burned out as I am.  Part of me wants to tell my mom to do all of us a favor and die.  She is a major drag.  I have no life because I chose to be her Care Giver.  I'm not sure I'd do it over again, not unless I had family commitment to help either through physically or financially help.

I went back to the pool.  A few minutes later my mom came out the door holding her sized 24W swim suit.  She was fully dressed in her jeans and sweater.  I said to her. "Ma maybe you should put your suit on in the house?"

"No, I'll put it on in the pool."  She replied as though there was nothing wrong with her skewed logic.

"Your cloths will get wet."  I answered back.

"No they won't."  She said back.

Then my husband said, "Why don't you use the garage to change into your suit."

"That's a good idea!" My mom said to him as she walked into the garage.

I got out of the pool and helped her.  She was worried that "the people" were watching her.  I joked with her and told her to give them all a thrill.  We put on her big bathing suit which looked like a sun dress on her, hanging down to her knees.

Mom was finally in the pool.  I swam around a little with her and then I got out so that I could make the call for respite.

I called the Visiting Angels.  I had a nice conversation with the woman who runs the organization.  Long story short, she's coming on Thursday with a potential "buddy" for my mom.  Someone who will come and swim in the pool with her or take her shopping.  My mom wants a man buddy, but it's a woman dominated field with few men taking on the role as a Respite Care Giver.  I'm looking forward to Thursday and hope that my mom likes the Visiting Angel.

While I was on the phone with the respite woman, Marty showed up unexpectedly.  He was driving down 93, on his way home from work and he decided to pass his exit so that he could visit Ma.  My mom was psyched to see Marty, it's been six months since he's seen us.  Marty always makes my mom happy, he has a way of making her laugh out loud.

I asked Marty if I could take my mom to his house for a few hours to go in the pool with him.  I asked him if he'd help me by taking Ma for a short visit.  I told him that I'd even bring lunch for everyone, food that I know won't twang my mom's brain.  I didn't get an answer, I got a nervous laugh.

I told Marty how Ann is back in my life and helping.  I told him about the Visiting Angels and how Ann is paying for a few hours of respite for me, respite that I need or I fear I'll end up dead before my mother.   I also told Marty about the book we all need to read, "The 36 Hour Day", a book that will explain what is going on with our mom.  We all need to understand the illness because we could all end up in the same boat as our mom, living in fear, paranoid and delirious.

It was awesome having Marty come to visit.  I wish he would visit more often, his visits brighten my mom's day more than anyone on this planet.  Look at the smile on Ma's face!

Yesterday we were all over the emotional map with my mom.  We were on the Lewy Roller Coaster most of the day yesterday.

The day ended well.  She went to bed happy because Marty came to see her.  I took pictures, pictures that we can all look at one day and remember the fond memories we had with Ma before she gets her other wing.

Yesterday she told Marty, "I am an angel you know, I have one wing and will get my other one when I die."

21 June 2010

Life Happens and Nothing Lasts Forever

The weekend is over and life will resume some normalcy where my mom is concerned.  It's sad to see her confusion and how she mixes reality and dreams, not knowing where the line between the two exists.  

She asks lots of questions, repeating some until her mind gets the answer that it wants to hear.  

"Hey, look at the elephant over there, can you see it?" Is a question my mom asks often.  In my mom's mind we've had giraffe's, horses, elephants and tigers in the backyard.  The accepted answer, "Nope, can't see it but you can because of your magic eye."

Today we see her Neurologist.  She'll have the test that's given to Alzheimer's patients again.  We'll learn how much she's declined over the last six months.  It will be interesting to see how she does on the test, especially since she's been taking coconut oil supplements and I've been cooking with cold pressed virgin coconut oil.

My mom's hallucinations have changed in the last six months.  She sees dead family members all the time.  She has conversations with priests and nuns that visit her on the patio.  My mom insists that her friends are hungry.  She is beginning to leave her food for her "friends."  Food that doesn't get eaten of course.

My mom's speech is way better than her initial test.  She can find her words more readily, thanks to Dr. Barton's help with prescribing supplements that help with brain cognition.

This afternoon I'll call the Visiting Angels, my husband is taking the day off to keep an eye on my mom so that I can make phone calls which will initiate needed respite.  My mother-in-law offered to sit with my mom for a couple of hours on days when I need to get away for a short time to do something for myself like get a dollar a minute massage at the mall.  My MIL thought that I didn't trust her to stay with my mom, but that wasn't the reason I haven't asked her for help... I didn't want to impose.  

My MIL misses Jay a lot.  She told me that Jay makes her feel calm and she wants her to come back.  I do too.  So does my husband.  Jay helped me just by being here.  

I called Jay yesterday at my cousins.  I asked her if she would come back.  She's coming back next weekend.  I feel so much better knowing Jay is returning.  I've been working on my mom.  I told her that Jay is Rachel's buddy and that my sister is going to get her a buddy.   This made my mom happy.  My mom is thrilled that my sister is helping me, when I told her the news, my mom gave me a big smile followed by a very big hug.

Life happens and noting lasts forever, not even my mom's insanity.

20 June 2010

Oh, My Pecacular!

Jay is at my cousin Linda's and I miss her.  I walk by her bedroom expecting to see her and the room is empty.  I miss hearing Jay's voice and her cute little laugh, a laugh that comes out like a bullet as a big HA!  

I miss my Jay.  She made me feel better just being here, but I know that the environment with my insane mother wasn't good for her.  Driving her to my cousin's house was hard because I didn't want her to go.  It was super tough when she looked at me in the car and said, "I feel like I'm leaving home."  I couldn't have agreed with her more at that moment.  She kept telling me not to worry, that she'll be back.  

It was nice having Jay here to talk to me... no, it was awesome having her here to talk to me.  Jay is the mother energy that I have been craving.  It was so hard to leave her behind at my cousin Linda's, watching her in the rear view mirror, I busted out crying.  I cried most of my drive home.  In order to cheer myself up, I imagined how I will feel when I'm on my way to get Jay to bring her home again.

Fortunately, I had an hour drive home and was able to pull myself together before I got home.  I had time to myself which is a rare event these days.  My sister Ann is trying to help give me respite but I need respite to make the call for respite.  

I am burned out and need help to help myself.  I don't know how to express this to anyone because when I do it goes on deaf ears.  I get lots of advice, "Sue, you need help, call XYZ organization" is what well meaning family and friends suggest.  But, I need someone to come so that I can make the calls that I need to make in order to get the respite ball rolling.  I CAN NOT DO THIS ALONE.  I don't know how else to say it.

It's not fair to just put my mom in a home without exhausting all avenues, like Day Care and Respite services.  I can handle Care Giving when I have regular breaks.  My life feels like I'm living a life in prison sentence, no end in sight, no time off for any reason at all.  Prisoners have more freedom.

I wonder if it's time for me to pull out my Rosary beads and start praying.  Maybe I'll lay on Jay's bed like she did when she was here and pray for help.  I wish someone would call out of the blue and give me a break.

No one understands what I'm going through except my husband, mother-in-law and now Jay.  It's not easy.  I wish my family helped me more.  I wish they would read the book that Ann read, "The 36-Hour Day" so that they can understand the mental illness that we are all living with. 

Thank you Ann for reading that book and sending it to me.  I really need my family, all of them, even Jay.  With out my family, it's really hard to cope with the insanity, especially when I'm so worn out from my 36 hour days.  

Yesterday, my niece came over with her boyfriend shortly after I arrived home.  It was really good to see her.  

My mom was thrilled to see her Granddaughter, especially because my niece is a fellow pool lover.  We were graced with a hot afternoon and pool water that was just warm enough so that it didn't cause us to go into cardiac arrest.  The pool was refreshing once we got over the initial shock of the water.  "Oh, my pecacular!" - that's my mom's word for private parts.

Today is another pool day so care giving for my mom will be on the easier side, well I hope that it will be easier.  One never knows with her because dementia and delirium always have a way of taking over.  It could have already started as a bad day, my mom is looking for her shoes.  Ten pairs of shoes lined up on her dresser and not one is a pair she wants to put on her feet.

19 June 2010

Our Family Treasure

Jay is leaving today.   I hate to see her go but I know the stress of my mom's demented mind is too much for her.  She needs to relax and get better.  Stress is poison and will do her more harm than good.  

I will miss Jay, like my MIL she appreciates what I do for her.  Jay enjoys everything that I prepare for her to eat, especially my oven fried chicken.

I began to teach Jay during her stay with me, how to eat nutritious food and how to use food as medicine.  Breaking Jay of the "cheap food" concept is something that is tough for her to get her head around.  

Like most people she likes to cut corners on food, food that is contributing to her illness.  Cheap food is the root of poor nutrition in seniors.

I took Jay for a walk through Whole Foods a couple of days ago, just like I used to do with Uncle Al so that he could see all the healing colors of the produce section.  Whole Foods is a beautiful store with an explosion of color greeting every patron.  Jay enjoyed the produce section.  The walk through Whole Foods made her feel better.  I wish I could take her on more walks through Whole Foods.

I'll miss Jay praying the Rosary in my house.  I'll miss her asking me if I want to hold her rosary beads, a special set that a friend brought back for her from Fatima.  

I wish my mother was leaving and Jay was staying.  I still want Jay to live with us.  It would be good for her and my MIL, they have become good friends.

Jay will come back.  She promised to visit a couple of times a week, after all she does have a bedroom here now.  Jay is worried about food and how she will get to continue to eat nutritious food once she goes back home.  I assured her that I would continue helping her to eat the way she has been eating over the last couple of weeks.

Last night I told Jay that I'd love to teach her how to cook nutritious food so that she could help herself when she's back home.  Initially she wasn't too keen on this idea but last night, Jay liked the idea.

Having Jay here was good for me.  I got to have my Aunt tell me that I'm doing the right things and that she loves me.  She is a true gem.  

I was able to relive the feelings of my childhood when I would stay overnight at Jay's.  She was so much fun.  Jay had a special cup full of crayons, crayons that she wasn't afraid to use.  I wish I had all the pictures that we drew together when I was a kid.  Maybe I can get Jay to draw me her pretty lady with the big hat and a Santa face?  Jay was a good drawer.  

Jay's visit reminded me of all the lessons of family that I had learned from my dad.  Jay is an awesome aunt and has been for my entire life.  Jay is our family treasure.

18 June 2010

Three Old Ladies

Who knew that 3 old ladies could create such a disturbance in ones life?

My mom, she's the crazy one with some form of Alzheimer's.  I believe it's Lewy Bodies Dementia.  She's been nuts for a little more than two years.  

Today she hates me.  She knows that it hurts me when she tells me that I'm not her family; mom manages to sling this at me when I'm down.  Today, she yelled, "You are not my family!  I want my family!"

My mom likes to make me cry.  She thinks there's 3 of me.  I'm waiting for evening to change my cloths so that she thinks I'm the nurse that she likes.  

My mom doesn't like Jay living here with us, so she's making life a living hell for me and everyone else in my house.

I have cried for days.  My heart is heavy.  My world feels like it's collapsing around me.  I just can't hold up all of these old ladies, not with out a break.  I haven't had a break in weeks.  I need a break more than I've ever needed one.  I don't know when one will come.  Sigh.

All of my spare time, little as it was, has been consumed by my aged Aunt Jay.  An Aunt that I love with all of my heart.  

Jay has been there for me my entire life; I owe her.  She's been there for everyone.  Now, when she needs me most, I can't help her.  

I am too stressed out.  It's too hard juggling everyone and everything, spreading myself thin in order to make everyone happy.  No one is happy, especially me... I'm miserable.  I KNOW that no one can make anyone happy, but for some retarded reason, I tried.  I failed miserably.  I lost my focus of making myself happy first.  

Somehow, living with someone who is insane seems to create more insanity.  It's a very weird energy, an energy that I'm beginning to believe can turn the most sane person into a babbling idiot.  

Will respite help me to deal with the crazy energy or am I destined to be a nut too?

The stress isn't good for Jay.  I asked her to leave two days ago but she told me she can't leave, she's worrying about me.  For some reason she thinks if she's here praying the Rosary, she can fix all of this trouble.   Unless of course the Blessed Virgin comes down herself and fixes things, I'll start to say the Rosary every day too.  

Jay sees that I need a break.  She wants to help me with my mom, but my mom considers her a "Butt-in-ski".   My mom's got a bad attitude when it comes to Jay helping.  Initially, Jay helped and her help was graciously accepted by my mom.  Then, Jay had to put in her two cents and sided with me on something, my mom immediately turned on her one time best friend.

... then there's my MIL.  She's got all her marbles.  She keeps to herself and rarely butts in.  I feel bad that she has to live in this crazy nightmare of mine.  I feel bad for my husband too for reasons too numerous to list.  If I did, it may send me into a depression!

Life with three old ladies is intense.  I think I could handle things better if I had more frequent breaks.  I'm in a rut.  I need respite in order to schedule more respite.  

Help!  Are there any volunteers that can step up and give me a day off so that I can do what I need to get regularly scheduled respite?  Please.  I really need help.  I'm dying over here.  Thanks in advance.

17 June 2010

All's Well That Ends Well

It's been a whirlwind having my Aunt Jay living with us.  The change in my mom's environment created an upset, one that I sort of expected but not to the extent that it all happened.

Jay needed help.  Her nurse practitioner told her that she needed help, especially before her cataract surgery.  Jay called me for help, help to get food for her cats.  I asked a few questions and realized that she needed food for herself too.  She needed drops put in her eyes before surgery.  She couldn't see.  She was shaky.  Jay was frailer than I've ever seen her.  When I hugged her, I felt like I needed to be super gentle or she'd snap in two pieces.

In Jay I saw the nightmare that I've had my entire life, that I'd be alone as an old lady.  I never wanted children of my own, the whole idea seemed ludicrous to me.  I had nephews and a niece.  I always believed they'd help me when I was an old lady.

Helping my mom, I realize the idea that my nephews and my niece would take care of me when I was an old lady was an unrealistic expectation.

Care Giving, it's a hard job, a thankless job, a job that requires very thick skin... it's a job that's not for everyone, sometimes I even wonder if it's for me.  I've been doing a form of care giving my entire life, mostly with seniors.  However, as difficult as this unpaid job is, Care Giving for a senior member of ones family is the most rewarding experience of one's life.

We have had upsets over the last couple of days.  I cried and sobbed a lot.  I'm overwhelmed because I'm so darn tired from the stress.  I really need a break bad.

Thanks to my sister Ann, she got the ball rolling for respite for me.  Unfortunately, the woman called at the worst possible time.  I had a melt down.  I was in the middle of a shit storm.  My mom was super demented.  She was angry with my aunt and even yelled at her, "You be quiet.  You are not my friend anymore!"  My mom was a lunatic.

I cried.  I sobbed.  I cried and cried.  I screamed a primal scream.  The pressure was intense.  I thought for a few minutes that I was going to have to go to a hospital.  Jay wouldn't leave me alone, she wanted to talk.  My head was aching.  So many problems with no solutions.  I had the weight of the world on my shoulders and it was getting way too heavy.

I sat alone for 5 minutes and thought about the homeopathic remedy that Dr. Barton had given my mom while we were in his office earlier in the day.  He had listened to her talk and talk about her 7 weddings and different birds hiding in the tree outside his office window.  Before we left, he gave her a few drops of Hyoscyamus Niger 12C, here's a url  at ABC Homeopathy that describes the use for this homeopathic remedy.

Dr. Barton suggested I wait until the following day to give her more, he wanted me to observe her and then write him a note.  Driving home, my mom was giggling and laughing.  She was in fine spirits.  She just loves Dr. Barton and talking to him.  He's her favorite doctor.

I began to lay out the afternoon plans for my mom so that she wouldn't be surprised.  She doesn't like surprises, they always seem to cause huge behavior problems.  I told her that we'd have lunch and then we'd go food shopping.  She didn't want to come along.  She wanted to sit in the yard because she believed that she was getting married to some good looking guy.  I told her that she could stay home with Jay.

"ABSOLUTELY NOT!" My mom screamed at me.

She was peeved with my aunt.  She felt like she was bossing her around.  She hasn't been, she's just been watching her for me.  A job that Jay takes serious.

After a couple of hours of insanity, I said to myself, "She needs another dose."  So, I got her blue shot glass and put a few drops in a little water and said to my mom in the middle of her outburst, "Here, drink this."

I walked away and left her in the room with Jay.

Moments had passed and I went back in the room with Jay and my mom.  Everything had changed.  It was better.  My mom was my old mom who was laughing and joking with Jay as they watched TV.  Jay turned to me with her mouth on the floor, wide eyed and said, "Susan, I can not believe the change.  It's amazing."

My mom gave Jay a hug.  Jay hugged my mom.  I hugged my mom.  Jay hugged me.  I hugged Jay.  This hugging fest went on for about 5 minutes with a few, "I love you's" thrown in for good measure.

Yesterday, Jay prayed the entire Rosary.  She felt so bad but didn't take my mother seriously.  I did.  I was so embarrassed and crushed that my mother was being so mean to my dear old Aunt Jay.  An aunt who was always here for us, ALWAYS.  I sobbed and cried for Jay.  Jay, she prayed.

Yesterday, when I took my mom out to the market for a few things, my MIL asked Jay if she wanted to go for a little walk.  Jay walked with my MIL, she had a nice time.  I love my MIL for helping my Jay.  Helping Jay helps me.  I love her for that gesture.

Last night, they both ate all of their dinner.  Oven fried chicken thighs and steamed fresh vegetables.  Lots of vegetables.  They had ice cream for dessert and coffee while they watched Wheel of Fortune.  My mom was happy.  Jay was happy.

All's well that ends well.

15 June 2010

The Pee Bottles

My mom's behavior has been more bizarre than usual so I called her doctor and had a UTI test ordered.

Last time we were at the clinic the nurse gave me two extra bottles and a bio-hazard bag so that my mom could pee in the cup at home.  I thought it would be easier and if she missed, she was home and I could clean up the mess easier.

I put the cups next to the toilet in my mom's bathroom and told her to use the cup after she drank a big glass of water.

Two minutes went by and my mom was in the bathroom.  I came back to her room with a cup of tea for her to drink too.

"There it is!"  My mom exclaimed as she pointed to her little bit of pee in the cup that she put in the bio-hazard bag.

"It's not enough Ma.  Can you drink the water and this tea so that you can give a better sample?"  I asked as I handed her the cup of tea.

I left the room to check on Jay.

I was in the kitchen talking to Jay when my mom came in to the room with the fresh pee cup.  She was holding it up and waving it at me.  She knew what she was trying to say about the cup but the words didn't come out the way she had wanted.

I repeated the instructions.  "Ma, drink the water and the tea and when you have to pee, pee in the cup, OK?"

My mom shook her head yes and went back to her room.

A few minutes later I checked on her and she pee'd in the 2nd fresh cup, not much pee, just a dribble.  Her idea was to keep peeing at different times until she had enough in the cup.  She didn't understand that we needed it in one shot or the sample would be contaminated.

I still don't think she understands the concept of sample contamination.

It was getting late and I didn't want to miss dropping off her sample so we rushed with the first sample, hoping that it would be enough.  By this time, my mom really had to pee so I asked her to hold it while we drove to the clinic about 2 miles from our house.

I hit every bump.  I heard my mom complain with every bump that the truck went over.  We made it.

The technician looked at the sample and said, "We might have enough in there."  She whisked the sample away and came back to say, "It's a little short but it might work."  My mom didn't need to pee in another fresh cup at the clinic... yay!

"Ok Ma, you can go use the toilet, you don't need to pee in the cup."  I said to my mom.

"Where's the cup?"  My mom replied.

"You don't need the cup, you pee'd enough at home in the first cup."  I added as an explanation.

My mom looked confused.

"OK Ma, let's use the toilet."  I walked her down the hall.

My mom was still looking for the pee cup.

Finally, I was able to convince her to pee in the toilet.  She thought it was a new way to gather pee, she thought it was nifty.

"Do you want to see?"  My mom yelled to me from behind the door.

"No, that's OK, just flush the toilet and come out."  I added.

"Don't you want to see it?"  My mom answered back through the door, a question I remember asking her so many times as a little girl.

"Nope.  Just flush."  I answered back.


Departing the clinic with 2 fresh pee cups, I'm better prepared to handle the pee gathering for the next time we need to check my mom for a UTI.

There was lots of giggling in my house yesterday when I was trying to get my mom to pee in the cup.  Jay sat in the other room and let out a laugh.  Who needs TV?  Life here is funnier than any sitcom.  A newly married couple and 3 old ladies sure do create situations that make us laugh.

14 June 2010

The Wedding of Angels

My mom is waiting for the wedding ceremony that is happening in our backyard.  She watches the people setting up for the wedding, preparing for the big celebration.  My mom sees my dad and gets angry because she thinks my dad is getting married.

I tell her that it's not a wedding but a celebration for good souls who are getting their angel wings.  Wings that will allow them to fly up and be with God.  My father is the one who runs the ceremonies.

She does not believe that it's an angel ceremony, she believes it's a wedding.

My mom expected to see my sister Donna this weekend.  I called her a few times but never got an answer on the phone, she must have gone away for the weekend.  Not seeing Donna contributed to her bad mood that just got worse as the weekend progressed.  Last night my mom was being a total bitch.

Jay is here because of her illness brought on by the mold in her house.  Everything was going along great until my mom thought Jay was "bossing her around."  I'm not sure what happened.

I do know that Jay attempted to sweep my kitchen floor and my mom got mad.  She grabbed the broom from her and began yelling at her, "NO! NO! NO!"  My mom put the dust pan in the broom closet and finished up the sweeping.  My mother NEVER sweeps the kitchen but she definitely didn't want Jay doing it either.  I think she said something to Jay to the effect that she "was telling Susie on her."

My mom is upset that Jay is here.  She's upset that I'm bringing her cats to the vet and then bringing them here too.  Jay can't go back to her apartment until the mold issue is resolved.  Her cats can't stay there either or they'll die.  Who knows if they're not dead already?  My mom doesn't understand.

This morning I was woken by my mom, dressed and walking on the squeaky floor above my bed.  It was 5 AM, too early to be woken.  I didn't wake up in a good mood.  I'm tired.

I don't know what to tell my mom about the wedding that she thinks we are having in the backyard.  She isn't believing the story about it being a ceremony for souls getting their angel wings.  She believes it's a wedding.  I need to convince her that it's a wedding to become an angel.

I've told her that we can only get married on Earth, not in Heaven... that's why we are born on Earth, to enjoy the Earthly pleasures.  I explain that what she is seeing are angels getting their wings, a sort of wedding of angels.

My mom wants to die.  She wants her big celebration party.  She wants to be with my dad.  She wants my dad to talk to her and tell her what's going on.  I tell her that it's against the Universal Laws for her and my dad to be able to speak like she talks to those of us who are still alive on Earth.  She doesn't understand.

I explained to her that I worked out a special deal with Dream Master to hook up email so that she could communicate with my dad.  I also reminded her that the only communication that she can believe is the email from dad because the impostors are always working on messing with her brain.  They want her to be angry because when she's angry my dad doesn't come to see her.

My mom was looking on the roof as she sat in the sunroom.  She glared with a look in her eye that indicated trouble was brewing.  No matter what Jay or I said to my mom, she got an attitude.

It rained all weekend; weather that kept my mom stuck inside.   My mom's hallucinations built over the weekend, getting more and more intense, making her angry.  She is angry.  She is mad because she thinks I'm keeping secrets about my father from her.

Well, I think it's time for my father to "write my mom a letter" and put her worries at ease.  Let's hope this works.

13 June 2010

A Blessing Named Jay

The last week has been a little intense at times.  Jay was very sick and she was worried about her cataract surgery.  She drove me a little nuts.

All week I fed Jay nutritious foods, a little at a time, all day long.  Initially she could barely eat, a tell tale sign that she had been literally starving.

Jay is a stubborn old woman, she knows what she wants and doesn't like anyone telling her what to do.  Jay has always been independent and hated to ask anyone for help.  For years she wouldn't let us into her apartment we'd always meet her at the curb and she'd get into the car.  Jay would never stay over night at any relatives home, not even mine, the home where her best friend lived (and still does), my mom.

For Jay to call me and ask for help, she must have been worried and knew that she needed it.  She asked for cat food for her cats.  It was this call that gave me the opening to see how she was living.

Jay has mold issues, issues that I believe are making her very sick.  I believe a lot of her health problems developed because of the mold.  Her eye lids around her eyes were always pink, a symptom of mold; the pink is now gone.  Her body was becoming weak and her mind was slipping.  Jay was showing signs of neurological damage, another symptom of mold; Jay was hallucinating and couldn't remember anything.

Jay has 2 cats that are still in the apartment.  Tomorrow the cats have an appointment at our cats veterinarian to check their health.  The cats run and hide from people, a sign that the animal is sick.  I do hope we can help her cats get better, she loves her animals.  Jay and her animals will be here with me for a few weeks so that I can help them to restore their health while Jay's house is being repaired.

Jay's dementia symptoms are less and less every day.  She is getting stronger.  She's walking better and a little faster, but still walking very slow.  She's laughing and talking again.  Yesterday she had me dial the phone for her for a few hours.  She talked with everyone.  My sister Ann, my cousin Linda, her friend Lorraine and my cousin Jess.  She laughed a lot.

Jay's face is getting a rosy color again.  When she arrived 9 days ago her skin was gray and yellow.  She looked horrible.  I was afraid she was going to die.  My mom, she actually thought she died a couple of times last weekend, running to find my husband or me to check that she was breathing.  Jay was alive every time.

I'm grateful for Jay and all that she does to help me with my mom.  I am able to do things around the house with Jay here because she keeps my mom company.  Jay goes along with the explanations that I give my mom about all the "weddings" that she sees being performed in my backyard.  I tell my mom that she's not seeing a wedding but all the good souls getting their wings so that they can fly up to be with God.  Jay likes my explanations.

So many great things have been happening since Jay arrived.  The best was getting an email note from my sister, the sister that I've been missing a lot.  Long story short, my sister is back in my life.  Jay believes that she had something to do with my sister's change of heart.  I let her believe this because it made her feel so happy to give me something that I wanted very badly... my birth family to be in my life.

Today, I'm happy and my house has the vibe that I remember living in when my dad was alive.  I can't explain the energy.  It feels like Baci is alive too.  I feel all of my family who have passed, here in my house.

I'm grateful for Jay.  My mission is to get her healthy again, so that she can live in her apartment with her cats. She would be able to walk to her church and her favorite supermarket.  She promised to come to my house a couple of days a week to help me with my mom so that I can have some respite.

I'm teaching Jay how to cook for herself with herbs and fresh vegetables.  Yesterday she helped me make turkey meatballs; we had spaghetti and meatballs, her favorite.  Jay ate seconds!  I made the dish with gluten free spaghetti and no breadcrumbs in the meatballs.  Dinner was fabulous.  Jay told me that it's been her favorite meal so far.

My personal prayers were answered through a blessing named Jay.

11 June 2010

Dangers of Mold on Senior Health

My Aunt Jay has been with us for a week today.  She is feeling sick, nausea, dizziness, fatigue and she can barely walk.  My mom jokes that Jay walks like Tim Conway from the days when he did a skit as an old man.  I don't think Jay likes being compared to an old man.

Jay's house has mold.  I think it's black mold but I'm not sure.  We're having the air tested so that we know what we are dealing with before we have the mold removed.  Mold is really dangerous, especially black mold.

Black mold can bring on dementia.  It can bring on heart disease.  Mold can get into ones body and keep you sick.  In my opinion, mold is the "mysterious" illness that brings on health issues which are difficult for doctors to diagnose.

Jay has 2 cats that are still living in the mold.  Jay misses her cats and wants to see them; I can't bring her back into her sick apartment.

The solution is to bring her cats to our vet for a check up.  We want to make sure that her cats don't have any illnesses that will pass on to our kittens.  We need to help her cats detox from the mold; more than likely they have it growing in their bodies.  Jay has had a few of her cats die.  I bet it was from the mold toxins.

I want Jay to stay with me until we can fix her apartment and remove the mold.  I will teach her how to prepare food for herself, real food.  I'll bring her to our doctors here at Lahey Clinic for a second opinion to her medical conditions.  She appears to be having side effects from Metoprol; she feels sick all the time with nausea and overall weakness.  It's hard to say if it's the drugs that she's on or side effects from the mold.

Jay was always healthy and could run around with the youngest of our family.  Today, she can barely walk, a side effect of Metoprol.  It's not a drug that one can just stop taking, the patient needs to be weened off of it or they could die.

My mom stopped taking her Toprol XL a few years ago and ended up in the ER.  She didn't want to take it anymore, she was tired of feeling so sick.  I couldn't force her to take her drugs because it was against her will.  She survived, they installed a pace maker and her life was renewed.  Unfortunately, it was around the time that she got her pace maker that she lost her mind to Lewy.

Jay has been helping me with my mom.  She sits with her so that I can do other things like run to the store to pick up a few items for dinner.  It's super. Jay helps me prepare dinner by cutting the tips off the string beans or peeling carrots.  She loves helping me.

My house is becoming an assisted living facility filled with senior family members.  Jay has someone around to talk to all day long, someone her age.  My mom has her best buddy living here with her.  Mom helps Jay, which gives my mom a sense of purpose.  My MIL helps Jay too, giving her a feeling of being needed.

We all need to feel needed.  Jay feels needed.  My mom feels needed.  MIL feels needed.  We're getting into a routine.  Jay is settling in and everyone is getting used to her being here with us.

My mission is to help Jay to feel better so that she can live in her apartment if she wants.  However, I doubt she's going to want to go back once her cats are here.  Living alone is lonely and in my house, she's never alone and always has someone her age around.

Jay has been an awesome Aunt to me while I was growing up and even into my adult years.  Jay was my role model, she contributed to the person that I've become and it feels really great to be able to help her now when she needs it the most.

I love my little Jay.  Who knew she'd be the answer to my respite?!  Thank God she called me for cat food a little more than a week ago, it gave me the opening that I was waiting for so that I could step in and help her like I helped my mother.

In my opinion, the dangers of mold on our health are often over looked.  I wonder how many seniors are living in mold?  I wonder how many illnesses could be reversed just by removing mold?

Stay tuned.  I will surely document what I observe as we help Jay restore her good health.