Thanksgiving ...Bitter Sweet

The phone rings... I'm up to my elbows in turkey, guest are all arriving at the same time. Chaos.

Brian answers the phone, it's Maryann... she's in tears.

I put the turkey down, taking the phone from my sweet husband, my heart sank.

"My dad... he took a turn for the worse.  He can't sit up, his mouth is open, he's drooling, it's horrible.  My dad, he looks like he had a stroke!"  Maryann's voice cried to me, full of sadness and pain over the impending loss of her dad.

"Still come.  You need to be with us, we love you, we are your family."  I replied.  "It's going to be OK.  We are back together, you are back with your dad's family, we'll get through this, we love you.  It's what your dad wanted and his dream has come true."  I said to Maryann, my closest cousin and friend from when we were kids.

"I'm coming, I can't stay here.  I just didn't want to breakdown in front of your mother."  Maryann sobbed.

The decision to tell my mom was an easy one, I always tell her the truth, even in her demented state of mind.  I crouched down next to my mom and said, "Ma, Uncle Al isn't going to make it.  He's not feeling too good today.  Maryann and Dan are coming with Nikki."

My mom, she looks up from the beans that she was helping to prepare, eyes welling up with tears and a big frown on her face.  With her lower lip quivering she said, "He's going to Heaven.  He's leaving without me, he's leaving me here alone.  I want to go with him."  She began to cry.

My heart broke even more for my little mom.  I thought about how it must feel for her to have all of her siblings going and gone from this Earth; how she will never be able to have a real conversation.  I thought about how I'd feel if I were the last one remaining.  I cried inside, sucking in the tears, forcing myself not to let the floodgates break.

"It's OK Ma.  Uncle Al will still be here, just like Dad and Ed, your brother Auggie and your sister Flo.  They will all be here watching over you.  Just think, when it's your turn for the bus to come, they'll all be there welcoming you to your big Celebration of Life party that God throws in Heaven for all the good people like you."  I made my best attempt to calm her with words; it seemed to stop her tears and she went back to cutting the tips off the string beans.


Guests began arriving, it was total madness.  Nothing was ready.  Everyone congregated in the kitchen and wanted to talk to me.  Ahhhhhh.  I lost total control of my kitchen.  I let people help.  I got more behind.  Screw it.  Let's just have fun, who cares if nothing is ready at the same time.

The clean up that I needed to do the day before threw off my schedule.  I've learned that Care Giver's can't be married to plans when a bladder or bowels let loose on the floor.  Some things just need to take precedents and cleaning pee and poop always comes first.

Maryann arrived.  She saw my face, we hugged and she busted into tears.  We rocked and hugged, I assured her that everything will be OK, she's back with her Dad's family, his dream has come true.

We were sad that Uncle Al couldn't be here.  All of us were looking forward to seeing him in the big room downstairs, just like 2 years ago, before my mom took her turn for the worse, requiring all of my time.

Chaos turned into lots of fun.  I let go of my perceived ideal of what my Thanksgiving Dinner should be like for my guest and I enjoyed my family.  I missed all of them so much, it's been quite sometime since we hosted a party.  Joan, April, Amy, Dewey, Rose... all of my relatives that always come, relatives that I've enjoyed throughout the years.

Uncle Al's little princess was so darn cute, high heels and all.  "Look Sue, I have high heels!"  She shrieked in her little girl voice.

The generations are shifting, we are all moving up the ladder of life, making our way toward our place in Heaven.

My cousins and I, we are becoming the next group of seniors, one by one, the march of time progresses as our parents generation fight to prolong their last days on Earth.

Children were running around, giggles and laughter echoing through the house, restoring life that has long been absent from our home.  The children, restored the balance that we always enjoyed over the years.



Uncle Al's Princess, she made us laugh.  Her imagination is beautiful.  Talking into a hand mirror, laughing and giggling, playing with my cousin's little 2 year old man, grabbing him like her mom did to my brother Marty decades ago.

Skipping down the hall she exclaimed, "I'm going to Aunt Jo's room to play the piano!"  It was awesome having children here, they filled my dying heart with life.

Our Thanksgiving, it was bitter sweet.  Family was gathered, love filled the air, hugs and laughter shattered the sadness that had been looming for far too long in this household.  Family.  We need family to get through the rough times.

This holiday, I learned that petty arguments which separate families are ludicrous and do nothing but cloud the truth.  All that matters is being together and loving each other for who we are.  Just like my dad always taught us, family are your only true friends.  Thanksgiving Day, it has come and gone, but the memories and the love still linger.

Love is the answer, it cures all troubles and it can begin with you.  Rise above the BS because to miss out on family because of anger toward something is short sighted.  The only ones who suffer are the folks who refuse to let it all go and just love.

I adore my family.  I feel blessed to have so many people to love and be loved in return.  Life is too short because one day the ones we love will be gone and all we will have are memories.  What memories will you chose to have?  There's still time ... but remember, the clock is ticking.

Happy Thanksgiving to all my family.  I love you all and thank you for the memories.

Here are a few more pictures of family love in action...

The lesson I learned is all that matters is love.

I love my family... ALL OF YOU!

XOXO

Sue

Counting My Blessings

Today, I count my blessings.  We will spend the holiday with the remaining seniors of my parents generation... my only living Aunts and one Uncle will be here.  It's exciting.

Today, Uncle Al's dream is coming true.  Maryann, Dan, his little Princess, my mom and me... we are celebrating Thanksgiving Day together.  Uncle Al told me so many times when I'd pick him up at the nursing home, taking him out for the day, "I want my family together, I want you and Maryann to be like you were before, when you had fun.  Maryann, I want her to love my family as much as I love all of you."

"Don't worry Uncle Al, it will happen.  Just visualize us all together, happy... it will happen.  I promise you."  I replied with a strong belief; I believed that if I painted a positive picture, Uncle Al could help manifest his deepest desire.

That was 2 years ago when Uncle Al was pinning for his entire family to be reunited.... today, Uncle Al's dream will come true.  He will have dinner with his family here at our house.  He'll be with his only living relative, my mom.

Aunt Jay will be here too.  My parents thought they'd set Jay up with Uncle Al decades ago, but Uncle Al had his sights on my cousin Jeannette.  Al and Jeannette had different ideas, stealing away into the woods with a bottle of wine.  Al and Jeannette fell in love, married and adopted Maryann.

I am grateful that they brought Maryann into our family.  I am grateful that Aunt Jeannette taught Maryann and I how to cook, often we'd watch the Frugal Gourmet and Julia Child, cooking something for Uncle Al.  Aunt Jeannette made the best potato salad and stuffing.  Today, Maryann will bring the stuffing, made from Aunt Jeannette's recipe.

Aunt Rose will come today.  My Aunt opened my eyes to the magic of growing flowers from seed.  Because of Auntie Rose I absolutely LOVE marigolds; flowers that she always used to line her walkway.   A colorful  pathway to her cookie jar, full of Hermit cookies, the best darn cookies ever made.  Auntie Rose always invited me in for cookies and milk, then she'd let me play with my cousin Joan's Barbie Dolls.  Oh, what fond memories I have with her.  She was also the one who opened my eyes to books; each time we shopped she'd buy me one of those little children's books on displayed at the local A&P Supermarket checkout.  Today, I am grateful for my Aunt Rose and her passion for gardening and reading that she shared with me.

Today, I am counting my blessings that I have a family.  I love my family, all of them... I will miss those who live too far away, but they are in my heart.

We have a crowd coming today.  Marty, Patricia, Jay, Rose, Joan, April and Dewey, Justin, Amy and Caleb, Maryann and Dan, Nikki and my new family.  It will be a fine celebration, one where we will be together gorging ourselves on a fine feast of turkey.

Happy Thanksgiving... today I am counting my blessings and boy, do I have a lot to be thankful for today!

Roasted Brussels Sprouts and Garlic

Roasted Brussels Sprouts and Garlic

An easy dish to prepare as a side dish that is brain and heart healthy is Roasted Brussels Sprouts and Garlic.  It's pretty simple and quite delicious.

Ingredients

3-4 Brussels sprouts for each person, rinsed under cold water and cut in half
6-8 cloves of garlic chopped fine
3-4 Tablespoons Olive Oil (good quality has the best flavor)
Fresh ground Sea Salt and Black Pepper to taste

Instructions

In a large baking dish, put the olive oil on the bottom of the glass baking dish.  Place the cut brussels sprouts and garlic, stir so that the brussels sprouts are covered with oil and garlic.  Grind fresh salt and pepper over the brussels sprouts mixture.

Place dish in preheated 350 F oven and allow to roast for about 45 minutes.  Stir half way through the roasting time until the Brussels Sprouts are lightly browned.

Oh Happy Day

This morning went off without a hitch.  My mom was ready early.  I woke her up at 5:30...

"Ma, time to wake up.  The van will be here in 2 hours."  I gently woke her.  Boy, was it fun waking her up, a nice change of pace.

Martha arrived early.  My mom was ready with her lunch and bag of snacks. Smiles.  Lots of smiles.

I was a little slow with the camera this morning but I was able to snap a shot of my mom sitting in the front seat of the van.

Oh happy day... she's off to "school" to spend the day with her new friends.

Today begins the first day of some freedom for me.   I'm excited.  I did a dance.  I jumped up and down with joy.

Time to exercise.  I know it will help lift me out of the blues.  Seeing my mom drive off before 7:30 AM definitely lifted me out of the doldrums.  Today is a great day!

One More Day

Only one more day before services begin every day; help real help with caring for my mom.  However, I am losing it.  I have symptoms of depression making the final few steps of this long journey of caring alone seem impossible.  

I ask, "Can I make it until Monday when the van comes at 7:30 AM to bring my mom to Day Care?"  


Three days alone with my mom is way too hard on me lately.  Crying, has made it worse.  I am depressed.  I tried so hard not to become depressed, but I failed.

I experience feelings of hopelessness and despair one where I feel no way out and trapped.  I see my life in a cage, chained down as my mind slips away, losing consciousness I drown in sorrow. I ask for help.  I don't hear answers.  

I understand why care givers turn to suicide; the pain is intense.  The feelings associated with depression are real and we can not just "snap out of it."  The depressed Care Giver looks for a way out but we can't see the exit through the feelings of self pity.

Expectations rise and fall.  Failed expectations pull the Care Giver down as though a huge anchor has been tied around our necks; breathing is difficult as we feel a heaviness take over.  Pain, physical pain riddles our bodies, taunting us as our minds crumble, believing the only way out is death.

Tears and lots of them are shed.  Uncontrollably, without warning, tears projectile out of our eyes.  Sadness for the loss of family and the perceived failures of Care Giving take residence in our minds, pulling us down deeper into the darkness associated with Hell.

Death, we begin to think about death.  Maybe if we just get in our car and drive the wrong way on the highway into a Mack Truck, the pain will end once and for all.   We begin to believe that no one will miss us if we croak.  More and more our thoughts drift toward ways to end our lives; scary thoughts... unhealthy thoughts. 

Yesterday was this sort of day for me.  I did think about dying and how it would free me from care giving.  I thought about what would happen if I ended it and immediately got a chill up my spine.  I cried over the thought and became angry with myself for allowing this thought to penetrate my consciousness.

Care Giving day in and day out, 24 x 7, 7 days a week, 365 days a year for nearly 3 years without a real break has worn me down and weakened my constitution.  I am severely burned out.

I’m so close to success, the end of this long road of caring solo is coming to an end, yet I still feel that it will never arrive.  I am impatient. I need help to make the final mile.

Deeper into the pits of hellacious thoughts my mind drifts.  With a perceived feeling that family don't care nor see how desperately I need them right now.  Why?  

I cried. 

I prayed for strength to make the final stretch.

The most valuable lesson that I've learned through all of this that my husband is my family, he is the only one that matters now.  He is my rock.  He is here and he is holding me up. Reminding me all day yesterday that we are nearly there, that we can do it together.  


I have come so far, years of heads down care giving, times that have been much more difficult.  However, I felt defeated yesterday.  My feet felt as though they were stuck in cement rendering me immobile.  I need help.  I asked and cried for help… who will answer?

In comes my Knight in Shining Armor, my husband.  He has never let me down and for that, I'm grateful.  He hands me a lifeline of encouragement, extending his hand while saying, “Hold on, you can do it.” 

Only one more day to live through being my mom’s sole Care Giver every day.  I need to survive only one more day the grueling pain that’s the by-product of caring for a loved one with dementia.

I forgive myself for the dark thoughts that I have from time to time.  I forgive all those who want to help but don't know how.  I turn my focus to love; love of self and love of family.

I love myself.  I do believe that I can if I think I can.  It’s now that I need to put on my running shoes, pick up my burden and persevere.  I can do this; I’ve done more difficult tasks associated with caring over the last 3 years alone.  I have what I need... I refuse to die before my time.

Only one more day and the oppression brought on by care giving for my demented mom will begin to be lifted.  I won’t need to call anyone for help because help will be here.  I can return to having happy relationships with my family.  I miss them more than I can express in words.

I understand Care Giver suicidal thoughts.  I also understand that suicide isn’t the answer, that it’s when we have these thoughts is when life is about to turn the corner to brighter days.

Today, I am more hopeful.  I can make it through one more day and I look forward to my own healing.  I look forward to getting help for myself where I can begin to experience joy.  I look forward to laughing.  I am excited for daily respite and the time to do things that bring me happiness.

Advice for other Care Givers who feel the burden of caring for a loved one, if family doesn’t help when you feel that you need them the most, release resentment and anger.  Siblings have no idea what you are experiencing and are more than likely numb to your cries for help. 

I found that there is help out there.  Call Elder Services in your area, they will help you.  Call them early and get the paperwork going, this was the toughest challenge as a 24 x 7 Care Giver, there is a lot of paperwork and hoops to jump through, but it is well worth the effort.

Only one more day and I KNOW I can make it because I think I can!

Climbing Patience Mountain

Rising expectations in any one’s life always seems to make the waiting feel like one last mountain needs to be scaled before success is achieved.  

I have been climbing Patience Mountain this week, a Care Giver’s nemesis.  It’s been difficult, especially because waiting isn’t my forte.  Impatience has been my calling card for my entire existence on this big blue planet that we call Earth; a lesson that has repeatedly danced in my face, mocking me when I fail to learn.

I’m on the verge of a personal revolution of sorts, my expectations are rising; patience, I need patience.  Like so many others throughout history, a revolution is brewing within me because I feel a glimmer of hope. 

I have tasted the forbidden fruit of freedom and it tastes divine.  A ground swell is lifting up out of the depths of my proclaimed hell, reaching for the hope that Heaven delivers.

My rising expectation of regaining a piece of my life is the dark before the dawn of my new life.  Finally, the sun is rising for us; Mom has qualified for services to stay at home because of a special program for seniors at risk for entering a nursing home; a program paid for with tax dollars.   

Nursing homes are expensive and the government subsidizes the costs of homes.  It’s more cost effective to have a loved one living at home and receiving Government subsidized services in the house.  

The impending help has my expectations on the rise as my patience for the services to begin, declines.  It is harder knowing that help is coming than it has been to keep my head down and push through the insanity of Care Giving.

It's times like yesterday, when everything seemed so dark and I felt that I can't go on anymore.  I can see the light at the end of the long dark road, a road that seems so long and nearly impossible to walk another step.  

I ask myself, "Can I make it?"  "Can I go on?"  Despair begins to take up residence in a small part of my brain, spreading like a cancer, breeding more hopelessness.  Shit!

Tears flow.  I cry in an attempt to wash away the sorrow my heart feels for myself, my family and my mom.  Visions of my dad pop into my mind, his words of wisdom fill my soul, "rest if you must, but don't you quit!"

I find myself chanting a mantra, "I can if I think I can."  Over and over again, I repeat this phrase; a form of self-hypnosis that has not failed me throughout my life.

My expectations are rising.  I am in the middle of my own personal revolution for freedom.  I am excited for the future; we have the best possible outcome.  Mom will stay with me where I can continue to prepare her meals using food as medicine, she has a fabulous Day Program that she attends with her new friends and then…

The phone rings...

"Hello, Susan?"  I hear my life line from Elder Services, a voice that touched my heart like an Archangel rejoicing the dawn of a new age.  "I have good news...  I found your mom a companion!"

Peace Is Here, Alas!

Peace has arrived in our home.  My mom is happy and doesn't see me as her enemy but her friend.  Hugs.  Lots of hugs are back, she hugs me, I hug her; peace is here, alas!

We have help coming, lots of help.  Today we meet with our Case Manager to find out exactly what we have available to help Ma stay home and out of a facility.

It's exciting to know that I won't have to Care Give alone with minimal breaks and even more exciting to know that my mom will get help.

My sister Donna has been a Godsend to me over the course of the last 3 years of caring for my mom.  She has taken my mom to give me a break, even if it was only a short time; it was welcomed.  There were times I was not as appreciative as I should have been with my sister, for that I'm sorry.  Stress clouded my gratitude.

Looking back, if she didn't help when she could, I never would be where I am right now with our mom.  She helped carry the burden when it was just too heavy and making me feel as though I was drowning.  Thank you Don, thank you for all that you have done and do.  I appreciate everything.

Yesterday, Donna took Ma for the day.  She also took Jay for the day.  Both seniors in our lives had a great day; when asked, my mom said that she had an A+ day.

Sandwiches, surprise visit from Amy (my mom's only Granddaughter) and Scott (one of Mom's 4 grandsons) was even home.  An exhausted mom returned around 5pm with a very soft voice, barely enough energy to speak.  "I need my bed."  She was able to squeak as she slowly walked up the stairs to her bedroom.

Brian and I, we had a fantastic day too.  Amy had given me a gift certificate for my birthday a few months ago; I lost it.  For weeks I've been looking for the gift card, it was no where that I was looking.  I sat quietly yesterday, wondering and asking myself, "Where did you put it?"

I visualized the day that I got the card and remembered where I had read it.  I had sat in my favorite chair and sobbed the day that I had received the present from Amy, totally unexpected and definitely welcomed.  I had no idea when we could use the gift but I knew that we would one day.

Yesterday, I remembered like a flash of a movie trailer and found it.  I found the card!

Brian and I visited the restaurant, Polcari's.  The food was delicious.  Eating all stuff that we NEVER eat at home, hot fresh bread, pasta and creamy sauces.

Our meals covered our plates.  Huge portions that were big enough to feed a family.   Tiramasu.  Cappacino.  Ahhhhh, it was a great celebration.  I even had a glass of wine that tasted like nectar, delicious.

Thank you Ame, it was so nice to use your birthday gift.  We had a fantastic date, even sitting at the tiny date table in the restaurant.  We laughed.  Took pictures and gazed into each other's eyes, just like the early days of our dating.  Fun and romance filled our day.

Peace is here, alas!

Our Little Drummer Girl

Yesterday was so much fun, we had my cousin Maryann's little girl come for a visit.

It was a welcomed energy to have in the house.  I'd say the thing I loved the most was watching her learn how to play the drums.

She hit the cymbals with different touches, softly at first, cautiously tapping until we told her that she could make noise.

Girl drummers in bands are cool.

"Look, I'm a rock and roller!"  Our little Princess exclaimed as she posed with the sticks, banging them together like she's seen drummers do.

In our house we love music.  We have different instruments so I thought I'd let her try each and pick the one that she liked the best.

Here she is trying the Ukilleli...

The strings needed to be fixed, it wasn't working very well for her but the size was right.

Ok... what about the guitar?  Want to try it?

She's a natural the way she picked up the huge guitar and tried to play it.  This would make a cool album cover some day when she cuts her first album.  The kid has music in her soul; she has a beat and it's awesome to witness.

Next, I had her try her hand at the keyboard... 

But, the instrument she was drawn back to every time were the drums.  Here's a short clip of our little girl playing drums.

"One, Two, Three, Four...."

The Return of The Good Days

My mom had a miracle lifeline appear out of nowhere, one that will allow her to stay with me at home.

Happiness is filling her life quickly; she is laughing at TV and singing along to Frank Sinatra and Dean Martin again.  My mom is more relaxed about where she lives and no longer argues with me when we pull in the driveway.

"Awww geee, this isn't my home.  Take me home!"  She demanded more and more frequently.  I became more and more stressed.

Getting her in the house was challenging, often she refused to get out of the truck as she begged me to take her home.  The key she once wore around her neck was missing.  I cried.

The change in her mood and behavior is directly tied to my moods; I'm burned out and have a hard time keeping a smile on my face.  Smiles on my face are indicative to the amount of smiles that I have in my heart; my heart has been running on fumes for a very long time.

"Ma, sorry, you gotta go to a home."  Words that seemed to shake the ground beneath her feet.  She didn't want to go but she knew during her lucid moments that caring for her was too much for me without help.  I cried a lot, often just busting out crying for no reason at all.  Sadness was taking over and like a cancer, it was affecting my mom, her behaviors were more difficult to manage; sleepless nights had returned.  My mom's cries pierced the night time silence, "I want to go home!  How do I get out of here?"

I prayed a bunch, more than I've ever prayed.  I cried a lot.  I lost my appetite and lost a few pounds (yay!)

Then... we had a miracle occur.  We have real help coming and my mom can stay home.  The news sounds too good to be true.  I assured her that it's real, that it's really happening; help is coming.

Peace is restored.  My mom has slept through the night for the last 3 nights.  Her blood pressure is much better.  I'm calmer.  I sing a lot again, a sign to my mom that I'm happy.   The return of the good days is welcomed.  I look forward to seeing her dance again.

Morning Cat Fights: A Solution

Every morning our 2 young cats fight with each other, a learned behavior that got them outside sooner than later. The cats are relentless with their tussling.  The cats remind me of my nephews when they were small.  The boys would wrestle, practicing moves that they had seen the actors of the WWF (World Wrestling Federation) perform every Saturday on TV.

Just like the cats, they'd play until someone got hurt... then the fun turned into a fight and tears.  The boys drove me insane, always making me yell at them to STOP IT STOP IT STOP IT!

The cats were adding to my morning stress.  My mother had become more difficult for me to care for and the cats fighting every morning was creating an energy that was distressing for me and my mom.

What to do?  I thought and thought, how do I stop them from fighting and hurting each other?  Sammy the cat, he often had wounded paws, Shakti the cat she has sharp teeth and is not afraid to use them.  Just yesterday she brought down a big squirrel.

Here's my solution to the fighting....

Keep 'em separated until it's time to let them out!

The cat carriers solved the morning cat fights.  Now, every morning Shakti jumps in her carrier and waits for the zipper to be closed.  Sammy, he is not so proactive with getting in his carrier; I need to put him in.

Miracles Happen... We Gotta Have Faith

Faith.  We need it sometimes when we are going through something difficult, like care giving for a terminally ill loved one.  I am no exception.

The last several weeks since my mom's been home from the hospital have been extremely difficult.  She appears to have notched down into another phase of Lewy Bodies Dementia.  Smiles.  Dancing.  Happiness.  All have been missing from my mom's life, she has been out of sorts.

My attitude hasn't helped my mom.  Exhaustion has taken a hold of my being.  The thought of moving one more step forward while carrying my mom was beginning to send me into a tail spin of despair.  No help was coming and all I could do was put my mom on a list for a nursing home.

I found myself doing a lot of self talk, talking myself into this being a good idea and the best for my mom.  Somehow, I had trouble believing myself, deep down, it didn't feel right because I didn't feel that I tried everything before throwing in the towel.

My mom has been sad since I told her that our time had come to an end.  She became more confused about where she lived; "I want to go home!" was her mantra once again.

I found myself asking questions. Home.  Where is home in her mind, where does she want to go?  Does she want to die and go to the big home in the sky with my dad and brothers?  Was she feeling insecure and scared?

Questions, I had lots of questions about the return of the I want to go home mantra.  Deep down, I knew my mom was frightened and scared.  Abandonment issues from her childhood were resurfacing.  Night roaming behaviors had returned with sleep disturbed nights for my family and me.

We were in a death spiral, spinning out of control as we barreled toward the hard pavement below us.  Sadness and despair took hold of me and in turn, my mom.  I have learned that my mom mirrors my emotions, she can feel everything; she has a sixth sense.

I had nothing more that I could do but pray.  I began to say the Hail Mary prayer; the Our Father prayer being the only other prayer that I remember from my many years of attending Catholic school.

Hail Mary, Full of Grace.  The Lord is with you.  Blessed art thou among woman and blessed is the fruit of thy womb, Jesus.  Holy Mary mother of God, pray for our sins, now and at the hour of our death, Amen.

Over and over I said this prayer.  Each passing day became more intense with my mom.  I prayed more.  The prayer became my mantra.  I prayed harder than I've prayed my entire life.  I needed Mother Mary's energy to comfort me.  I was scared shit.  I was frightened for my mom.  The vision of her screaming in the hospital was still fresh in my mind.

Faith.  I needed faith.

I prayed.

I prayed for the best possible outcome.  No longer did I try to orchestrate the future or what my mom's fate would become; I let her go and I prayed.  My prayers were answered at the 11th hour.

Yesterday, I got the call from our Case Manager with Elder Services.  My mom was approved for help.  She will now be able to stay home with me.  She can go to "school" every day with transportation.  I can have help come to the house; a companion... my mom will have a new companion.

I sobbed.

Relief.  Help is really coming, real help that will allow us to keep Ma home and out of a facility.  I will have help so that I can enjoy my life with my husband.  Alleluia!

Thank you Mother Mary, my favorite Patron Saint, for coming through and answering my prayers.  More importantly, thank you for giving me the strength to have faith.

Miracles do happen, we just gotta have faith.

The Mind Of Care Giving

Care Giving often seems as though it has a mind of it's own.  The Care Giver is just the pawn in life, often we appear numb and in a state of automatic pilot.

Care Givers, we don't think, we just do.  We spend our days and nights doing for others, forgetting about ourselves.

"It's in the doing," a lesson that I had learned years ago during my Spiritual training.  It's easy for people to give of themselves to others, we look outside of ourselves, rarely looking in to our own souls needs.  Doing.  We do this, we do that, but does it have any real meaning in the big scheme of life itself?

What we do today, will it matter tomorrow?

Care Giver's, we are doers in the now;  doing does matter to our loved one but does it matter to us?

Why do we care?  Why do we do for others when ignoring ourselves?  Are we sinning against ourselves when we lean too much one way in caring; forgetting about our own needs for a satisfying life?  Where's the balance?

Life is sacred.  To me, life isn't about an unborn fetus, but the sanctity of life.  Life begins the day we first take a breath and ends the moment we take our last breath.  Young and old, it doesn't matter, life is worth pursuing  because we have so many opportunities to experience love, happiness, sadness and every emotion in the middle.

Our lives as Care Giver's is sacred too.   I often forget about myself in the midst of all the doing that I do; is this a crime against myself?  To forget who I am and that my life has value too.  Should I be doing something else?

Left or right.  Up or down.  Someday's I do find that I'm lost, seeking the exit from Care Giving as though it's my only hope for surviving the insanity that is beginning to engulf my life.  Tears flow like a fast moving river, water, water, everywhere with a solution that is in sight, but not within my reach.

Do I wait?  Do I move forward?  What is the right answer?  Second guessing.  It's all becoming one big blur looking through tear soaked eyes.

One minute I feel that I've made the right decision and then the next moment when I hit road blocks, I begin to wonder if I should wait.  I don't know anymore.  I'm scared.  I'm confused.  My mind is spinning with "what if" scenarios as I think about throwing in the towel.  Often people quit just before success is attained... am I fooling myself?

I really don't know.  The mind of Care Giving is a strong force that is fueled by love.  Today, I pray.  I pray that I make the right decisions where success is achieved no matter if my mom stays home with me or moves to a nursing facility.  Time has my answers.  Today, I pray for the patience to wait and the inner ear to hear the answer.

It's Not You... It's Me

Uncle Al and Nikki (Granddaughter) calling Bingo

Last night, my mom had a clear moment so I told her that I found a nice place for her to live with nurses.  I explained to her that it's getting increasingly difficult for me to take care of her by myself without any help.  I just can't do it; my health is being compromised.

My mom seemed to understand.  She worries about me becoming ill during her lucid moments of clarity; last night was one of those nights.

"I don't like it when you get upset, holler and cry."  My mom said to me.

"I'm sorry Ma, but it's too much for me.  I'm totally burned out and just can't do it alone anymore.  My sleep is disrupted every day; it's a form of torture to just fall asleep and be woken repeatedly.  I know you can't help it.  You need people around all night, people who are rested and professionally trained to help you when you wake up confused.  It's so hard on me Ma.  It's not you, it's me.  I am really sorry that I don't have the energy to keep on going."  I began the discussion about her moving to a home.

She said a big word, something new for her, her vocabulary is improving.  She has been using big words correctly in sentences.  Last night she used a big word properly.  Insurmountable was the word;  I was shocked with her correct use and exclaimed, "Wow Ma, that's quite a big word!"

My mom replied with a smile and a laugh, "I can't help it if you are stupid."  We both laughed.

I told my mom that she'll be living with Uncle Al in his new place.  Initially she thought it was the old place and she shook her head NO with frowning eyes, the evil eye look that is my mom's signature look.  A scary look that frightened our Trick-o-Treater's this year when they came to the door and saw my mom.

"Ma, Uncle Al needs you.  You can watch out for him and make sure that he's OK.  We'll get Uncle Al Acupuncture so that the two of you can talk to each other."  My enthusiasm was mounting the more I talked about the home with my mom.

I continued, "Maryann found a beautiful place Ma.  It's bright and sunny, no elevators for the staff to hide stuff, the food is terrific and you know how I am about food; the home has gourmet style meals.   The place has a coffee cart that they wheel around all day.  You can drink coffee all day long!"

"You will have people around all the time.  They have Bingo every day, where each resident gets a number and then they pull one bingo ball; there's a new winner daily."   Telling her as much about the home as I could, she began to warm up to the idea.

I know that my mom doesn't like surprises and I couldn't see springing the move on her without warning.  It wouldn't be good for anyone.  During her clear times, I will talk about the move and how it will be better for all of us.

"Ma, we can become friends again.  We'll be nicer toward one another instead of the contempt we are beginning to feel toward each other, which is making all of our lives rot.  I love you Ma.  It's difficult for me to let you go but it's time, we are not helping each other anymore, we are doing more harm than good.  Both of us are suffering and it's no way for us to live."  I spoke to my mom with compassion and love, wanting her to understand why we need to change our living arrangement.

She seems to understand.  I assured her that we will visit her, that she'll see everyone more and experience more happiness because she'll be with people.

Who knows if I'm doing the right thing, explaining everything to her.  I do know that I have always been upfront with her, something that she appreciates.  It's why my mom trusts me; I don't lie to her about the serious things related to her health and care.

We are moving to a new phase of our lives together.  Mom will have the 24 hour care that she needs, something that is becoming increasingly difficult for me to do alone.

Today, I will create a new hypnosis recording for my mom.  The hypnosis script that I have written will penetrate her subconscious mind; phrases and words that will create a positive attitude about her moving to a new place.

We are treading in unchartered waters with my mom, but with the help of my cousin Maryann, we are getting through the challenges.  Thank God for miracles like my family, especially Maryann who's as dear to me as any of my siblings.

We are blessed.

While We Wait ...

What caption would you put on this picture?

"Look into my eyes... look deep into my eyes... you are getting sleepy, very sleepy.  At the count of 3, you will run into the kitchen and get us treats."

Way Past My Expiration Date As A Care Giver

Once I made the decision and called the home to put my mom on the list, I immediately felt relieved.  I feel that there's an end in sight to my care giving for my demented mother.

Facing my mom's insanity, day in and day out for nearly 3 years has worn me down.   I can never win with my mom, when I say something is white, she'll say it's black.  No is her answer to everything.  It's upsetting to always be wrong even when stating facts like the sky is blue.  "No it isn't" my mom will reply.

I am praying extra hard, praying for a bed to open up soon.

My mom went to bed last night at 7:30 PM.  At 8:30 PM she was up, fully dressed and ready to go somewhere.  Not sure where, but for the last few days she's been wanting to "go home."  Nothing here is familiar to her and she is looking at me as her jailer.  It's a struggle that I don't want to be involved because any answer I give her is wrong.

She woke again during the night at 1:30 AM and again at 5:30 AM, looking for a way out.

"Please tell me how to get out of here.  I want to go home."  My mom said to me as I greeted her at the top of the stairs.

I haven't had to deal with the statement, "I want to go home" in a few months.  I was able to keep her feeling secure but now, she knows that I'm finding her a home and she's back to being insecure again.  I wonder if she can feel that I've given up as her full time care giver?  Without help, I can not continue on this care giving path, I am done.

Inside of myself, I feel different.  I feel myself become less attached to my mom.  I have to let her go.  My cousin Maryann explained my situation in a way that sums it all up... "Sue, you are way past your expiration date as a Care Giver."

I am.  I want this nightmare to end.  The ups and downs of caring for my mom with very little help is having a negative affect on my health.  I don't feel good.  If I don't feel well, how can I be a good care giver?  I can't.

I do have advice for Care Givers who believe that they will never put their loved one in a home.  Never say never.  I was one who didn't believe in nursing homes.  My fear of nursing homes was born when we visited our Grandmother and Aunt Flo in the mental institution in 1968 or 1969.  I was about 8 or 9.

The battle ship gray walls, the fence over the TV that hung high from the ceiling, the cages that the patients were put... all of these images frightened me and caused me to form my opinion of nursing facilities when I was very young and impressionable.

Now, I feel like I am caged in my own home.  I am not free to live my life.  I cry a lot.   I am way past my expiration date for care giving.

On The List

My Ma and Uncle Al
They'll be together again in Al's nursing home

Finally, I have been able to come to terms with the idea of putting my mom in a nursing home.  It's definitely time.

"You'll know when it's time."  Advice that so many people who have walked in similar care giving shoes offered to me.   My reply has always been... "But when?  How will I know?"

"You'll know."  A short sentence that I now understand.   Words can't explain what "you'll know" means, it's a feeling that takes over and you just know.

Patience has not been one of my strong virtues.  I waited.  I waited.  I waited.  I didn't get any answers.  I found solutions to my mom's troubles.  Food as medicine helped her a lot, natural remedies, supplements, Reiki, Hypnosis and Acupuncture, all contributed to bringing my mom more good days than not so good ones.

The good days were phenomenal.  We had a great summer in the pool and dancing to her old favorite crooners.  I took pictures and movies of the good times.  Times that I know I'll look back on with a smile; knowing that I did all that I could to bring her more good days.

Her hospital stay seemed to be a turning point for the next phase of Lewy Bodies Dementia.  Confusion runs our lives.  Nothing makes sense, even reality is foreign to my mom.  She will be fine one minute, fall asleep for 10 minutes and wake up wanting to go home to a house in one of the many cities she's lived through out her life.

It's so sad to see her get angry with me because she believes that I'm keeping her prisoner.  She wants to call the cops and report me for keeping her locked up against her will.  Mom, she has no idea who I am today.  I'm not her daughter, I'm her warden.

Fecal incontinence is where I draw the line as a care giver.  I don't want to clean up shit.  Period.  My mom's been crapping herself at night.  It's sad.  It makes me cry and sob because it means that I've come to the end. I can't go on.

The time has come... she is more confused than aware.  Trouble sleeping, swallowing pills, recognizing her surroundings and most troubling is that she has no idea who I am most of the time.

I've been keeping track of the good and bad days.  Out of the last 7 days, she's only had about 3 good days. We have turned the corner to the final leg of mom's trip here on Earth.

It's time.  I made the call.  Mom, she's on a list to be in the same nursing home as Uncle Al, her only living relative.  There are 4 people ahead of us so I don't know when she'll be admitted; I pray that it's soon.

Mom's on the list and for the first time in years, I feel a little relieved to know that I will really be free from the burden that I've been carrying for far too long.

I am beginning to dream of going on my honeymoon with my husband, visiting my pen pal in San Fran and going to wine country with her and my husband.  I miss my friends.  I want to visit my friend Pauline; we haven't seen each other in decades.  I miss my family in Maine.  I miss seeing my great nephew grow.  I can't miss anymore of my life.  I need to golf.  I need to exercise and most important, I need to meditate regularly like I always was able before my mom had Lewy take up residence.

So... it will be over soon.  I'll be free.  My mom will have 24 hour care by more than one person (it's been just me for so long, no wonder she thinks I'm 3 people.)

I'm ready... and now I wait a little bit more for the phone to ring with the news that they have a bed for Mom.

The One Thing That Can Make Me Gag...

Years ago, back in 1998 when I first brought my mom to live with me, I told her that once she started to shit her pants, I wouldn't be able to care for her anymore.  It was a vow that I had made to myself and told my mom.  My mom totally understood, she knew how I would gag at just the thought of shit.

My nephews will attest to this fact of my weak stomach; when the kids were little, they found it amusing how they could say anything gross and I would begin to dry heave.  It was so much fun for them that they'd gather their friends for the "let's see if we can make Sue gag" show.  Yes, they did make me gag... talk of shit always did the trick.  My active imagination would always make me able to experience the words the kids would say to me.

It's now 2010 and my mom is still living with me only now she's got what we believe to be Lewy Bodies Dementia.  The illness seems to cause the body to just explode with shit, no warning, just streams of shit flying out of ones asshole; the one thing that can make me gag.

It sucks for everyone involved, especially me, the person who has to clean up the crap .... remember, I have a weak stomach for anything icky.  Shit is at the top of my icky list.

My mom's been wearing the pull up disposable underwear, they help save me from having to clean up a trail of shit.  I don't know what happened, when she took those pants off last night but I woke up this morning to find her laying asleep in her bed, half dressed in her street cloths.  No socks.  No shirt.  Just her jeans and her sweater that buttons up the front, of course she didn't have it buttoned.

The room was still dark at 6 AM.  I covered her and went to make myself a cup of coffee.  I looked in her bathroom on the way out and was horrified with what I had seen.  It looked like she had a shit party with feces all over the places.  I started to cry.

Later when the lights were on I noticed a trail of shit from her bed to the closet and then to the bathroom.  She got lost in her room and didn't make it to the toilet.

I sobbed.

We crossed the line that I had drawn in my mind decades ago; I can't ignore the fact that my mom could now be incontinent.  Fuck!

(apologies to my readers who have a hard time with the F-bomb but it's the only word that describes how I'm feeling right now.)

And You Think These Votes Will Be Counted?

Yesterday was our mid-term election day, my opportunity to cast my vote so that my voice can be heard.  My dad was a Korean War Veteran and instilled the importance of voting in all of my siblings and me.  He taught us that voting is our obligation to our country and ourselves because it's a freedom that so many troops fought and died to secure for future generations like me.

I always vote because of my father's passion for this country and his belief in freedom.

I believe in a Democratic Society and know that casting my vote is my contribution to democracy.  I take voting seriously.  It's my right as an American to have my votes counted.

My voting experience was uneventful, initially.  We have paper ballots in my town, something that I always feel better about using over the electronic voting machines or chad type ballots.  I am of the belief that the paper ballots are harder to tamper and allow for cheating; whereas electronic and chad type ballots leave a lot of opportunity for result discrepancies.

I filled in my ballot with my choices and headed for the checkout line.  The line was backed up, no one was moving.  I looked over and saw the ballot box OPEN with ballots all over the floor.  A policeman was standing at the ballot box, not even phased that all the previously cast ballots by other citizens of my town were all over the floor.  I was appalled.  How could this be happening?!

I heard one worker say in a matter of fact way, "Oh, the machine keeps getting jammed."  I was even more upset hearing these words.  How often has this happened throughout the day?  Why aren't these votes being treated like gold bars and under heavy guard?  We have troops dieing in other countries to secure foreign peoples right to vote ... what is wrong with this picture?

Finally, the ballot collecting machine was "working" again; the line began to move.   That's when I heard one of the Poll workers say, "HA HA HA... And you think these votes will be counted?!  HA HA HA."

I didn't think this was very funny.  Not even the police officer standing on duty next to the ballot box seemed to be startled by this woman's comment.  To me with all the corruption around voting and stolen elections, even if this woman was just joking, what she had said in a voting location was akin to someone joking about having a bomb while standing in an airport screening line.

All afternoon I was bothered by this scene at the polling location, wondering if votes had been compromised.  If our ballot boxes are old and keep getting jammed, fix the boxes or get new ones.  I did call and complain to a hotline.  It was unnerving, especially when a poll worker was joking about votes being counted during a time when stolen elections are becoming the norm.

Donna's Bright Idea

On Saturday, my sister Donna took my mom for the day (our Aunt Jay too, Donna did a double duty respite for my brother and me.)

I dropped my mom off at her house only to see my sister driving my mom's old car on the lawn.  I pulled up and couldn't figure out what on Earth she could be doing.

"Don!  What on Earth are you doing?"  I asked as I rolled down the window to the truck.

"I thought it would be nice if I could get Ma's car in the sun so that we could take a picture of her sitting in it."  Donna replied.

"Ahhhh, good idea."  I said and pulled out my camera from my purse.  I never leave home without my camera.

"Ma, come on, get in your car so we can take a picture."  Donna suggested to our mom.

"Oh, no.  I don't drive anymore.  I can't."  My mom replied.

We finally convinced her to just get in and see how it felt to sit in the front seat of her former car.  I told her that we needed to document the memory of her in her car for future generations.

She agreed and made the effort to get into the car.  Here's the little video clip of my mom getting in her once prized possession, her car.

"It's like I'm sitting in a hole!"  She exclaimed once she got in the front driver's seat.  My mom has become accustomed to riding in my truck; she likes being up high and can climb into the truck better than she can get herself into a car.


I took a few pictures and some video for posterity's sake.  One day we'll look at these pictures and movies and have a good laugh which will probably morph into tears because we miss her.

For now, we are enjoying every chance we can with our Ma because once she's gone, all we'll have are the memories.

I'm grateful for Donna's bright idea of taking pictures of Ma in her once beloved vehicle.  She loved her car.

Warning - Blogs Are Being Hijacked By Spammers!

One of my favorite blogs to visit is by Blogitse because she takes such interesting pictures.

Today I started to read all of my favorite blogs in my reader.  I removed the blogs that I follow from my main page because I want to begin making my site better by classifying all my posts, including the ones that I follow.

I began reading... came to Blogitse and noticed that she's having an issue with her blog.  If you go to it, you will be taken to another site, not Blogitse!

I did a google search to find out about blogs being hijacked and sure enough, there's a scummy program out that uses your blog to move to the top of search engines.  I went and found out that the "bastahds" (spoken in Boston) claim you don't have to "do all the work of an SEO."

My friend at Blogitse, I can't email her because I can't stay on her page long enough with out it being hijacked.

If it happens to you, here's how to fix it:

https://www.quora.com/Google-search-results-for-my-blog-have-been-hijacked-by-spammers-how-do-I-fix-that/answer/David-J-Wortham

Blogitse... I hope you see this blog post!!!

A Different Kind of Scary

Halloween.  Bumble bees, Harry Potter, Tweens dressed in regular cloths, carrying pillow cases while on the hunt for treats.

Halloween has come and gone, bellowing in the winter holiday season.

My mom was excited for Halloween yesterday.  She dressed in black with a bright orange polo shirt; waiting for the day to turn to night so that she could pass out candy to the kids.   Trick or Treat has always been something that my mom enjoyed; last night after dinner we set her up in front of the door with a big bowl of candy.

Mom played with the candy; picking it up, looking at it and sorting it on a little table next to the chair that we put in front of the door for her to sit and wait for the kids.

I had left the room for a few minutes.  Mom was sitting with the big bowl of candy, happily picking it up and putting it down as she waited for the children to arrive.  Brian left the room for less than a minute.  During that time, a group of kids came to the door.

My husband saw the kids, standing frozen and not sure what to do, on the other side of our glass stormed door.  My mom sitting in her chair with naturally wild hair and a frown face, one she often wears when she's trying to figure out what she's seeing, real kids were at the door... she looked scary.

The kids, they stood and waited.  They saw the big bowl of candy in mom's lap and knew that there were treats waiting for them... do they run away or wait... the look that the kids had on their faces was funny.  Mom, she was oblivious.

Brian opened the door and handed out candy to each of the tween boys standing in the door.  My mom tried to give the candy to the kids but it was a bit overwhelming to do by herself.

Each group of kids that arrived were a bit taken back by the sight of my mom in the doorway.  I shut off the light inside because I wanted our house to look a little creepy.  Who knew that having a demented old lady sitting in the doorway would have such an awesome scary affect.

The kids that came to the door were respectful and once they realized my mom was demented, they smiled as though they were seeing their own Gram.  Each kid lined up in an orderly way, no shoving or pushing... mom even managed with a little help from my husband or me to give handfuls of candy to each kid.

During the time that we were waiting for kids to arrive, my mom hallucinated about children.  She kept trying to give her imaginary Trick-o-Treater's candy.  I would hear her say in a sweet soft voice, "Come here.  Come on.  I have something for you."  Then she'd make the sound that one makes when calling a cat... it made me laugh.

Last night, we had a different kind of scary for the kids that showed up at our door.  We showed them the reality of what it is to get old and demented.

At the end of the night I said to my mom, "Ok, it's 8:00, Halloween is over."

My mom turned to me and said, "Ok, now it's time for me to have a piece of this candy!  Ha Ha Ha.... just kidding."

I love my mom, she didn't disappoint me by at least TRYING to snag a sweet treat.