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 May 2011

The Freedom Buzz

Care Giving for my mom with LBD had become oppressive; especially when she started falling all the time.  Every day, she would fall.  She needed someone watching her 24 hours a day, 7 days a week.  Even with help from the MassHealth Community Based Program, it wasn't enough to allow me to keep her at home with me any longer.

It was not safe for my mom or me.  She was a heavy 136 pound woman.  Lifting her off the floor was challenging, but I managed every time.

The stairs were becoming more and more frightening; I worried that she'd fall down the stairs when she was chasing her hallucinations.  Helping her up the stairs, I never knew when she'd freak out and try to push us both down the stairs.

Life as a LBD Care Giver is not for the weak of heart.  We lose our freedom to live.  Our lives are slowly consumed by Lewy, waiting to wreck havoc in any life that it can touch.  I was beginning to feel as though I was losing my mind.

Sleep deprivation.  I have it.  Sleeping with one ear open, always listening; never able to rest.  Falls. Odd behaviors and exit seeking, add to the stress of a Care Giver.  Lots of tears are shed.

Care Givers, we feel forgotten in this battle with Lewy.  No one understands the needs of the Care Giver, doctors rarely ask how WE are... health care professionals seem to not even know that treating the patient and Care Giver jointly is beneficial to the overall health of both.

When our loved ones start to fall, Care Givers are initially looked upon with suspicion because of bruises.  False accusations come to a head like a big zit on your nose.  Investigation by Protective Services, all add to the stress of a Care Giver... I know, it happened to me when my mom began to fall and get bruised.

I was a prisoner in my own home.  All that I was doing to help my mom was going unnoticed by everyone.  My heart was heavy.  I was left here alone, forgotten, left to carry my mom.  I cried.  I got mad at my family, again.   I was beginning to feel resentful.  I wanted to run away and even began to think that if I died, it would be OK.  I didn't want to live.

I heard my dad's voice, "Susie, wait.  Time heals all.  You will never fail unless you quit.  Wait."

I waited.

I sucked it up and found some strength.  I called everyone.  I cried.  I begged and pleaded for help.  Elder Services Case Manager asked me why I couldn't watch my mom for 24 hours, why did I need more help.  I couldn't believe I was hearing these words... are you kidding me?  My reply, "I can't do this for another second."

"God!  Please HELP me.  PLEASE!  I beg of you... please help this nightmare stop."  Looking up to the Heavens above, hands in the prayer Mudra, I pleaded.

I prayed to Mother Mary.  I had repeated the "Hail Mary" so many times, that I can still hear the prayer in my head.  It's like a record on replay, over and over, I hear her prayer.  I see her image when I close my eyes.

My mom is in a safe place.  I'm grateful that she isn't able to speak right now, she'd surely say something that would hurt my feelings.

We have the Freedom Buzz, all of us in our home.  All 3 of us can't stay awake past 9pm.  The house is quiet.     We are enjoying going out when we want, not worrying about finding someone to stay with Jo.  I can go out in the back yard, I can sit on the patio and drink a cup of coffee or a glass of wine.  No jumping up every second that I think I hear my mom.

Brian and I can have conversations again, full conversations that are uninterrupted by my need to check on Jo. We can watch an entire episode of American Pickers or Top Gear together.  We haven't been able to watch TV together, an entire show that we both enjoy for a very long time.

Laughter is returning.  Brian makes me laugh, he's so funny.  I don't have to cook every day.  We can have just a salad or go out for ethnic food to spice up our lives.

Yesterday, we had Indian food.  I never liked the smell of curry.  Cooking with cumin and coriander over the last few years, it helps cognition; helped me to acquire a taste for curry.  Oh my God... the food was amazing.  I LOVE Indian food.

We are free, sort of.  Freer than we had been.  I still visit my mom every day.  I'm off to visit her now and help her eat breakfast.  I'll bring all her nutrients that I had been giving her.  Maybe it will help her to find her ability to communicate.

The freedom buzz is amazing.  The relief is like nothing we've ever experienced.  We did it.  I did it.  I learned a lot about myself.  I also learned that everything is possible if we keep our eye on the goal and ignore all the buzzing bees around our head.

I am grateful for my freedom.  Thank you God, Mother Mary and any other supreme being that answered my cries for help.


  1. I am so happy for your freedom buzz!

  2. Your blog should be required reading for doctors and staff treating patients with lewy body and other dementia. Your experience as a caregiver is - unfortunately - not unique. Your mom is getting the 24 hour care she needs and you deserve some serious self-care and freedom.
    Daughter of mom with dementia in MN.

  3. My Husband & Myself take care on my Dad and agree 100%... this blog should be required reading for doctors and staff treating patients with lewy body and other dementia.
    All family members should read this too!!
    The caregiver MUST question, and even doubt all actions doctors choose. Our experience has removed trust in most doctors.
    Does anyone know what would happen if a healthy person took Namenda & Aricept? Because the doctors don't have a clue! Also just learned that Aricept is BANNED in most countries.
    What if an elderly person were misdiagnosed? Actually was healthy, and was put on these meds?
    Does anybody see Namenda & Aricept as a Godsend? Has Namenda & Aricept helped any?

    So tired, sad, confused, and angry.
    Dad has a bad dose of UIT right now. It is overwhelming!! All emotions explode 20 times an hour.Hope he comes back some... We miss my Dad.

  4. Thank you both for your kind words about my blog. My goal with it has always been to share my experiences with other Care Givers to help them know that there are alternatives.

    My mom got UTI's all the time too. She began taking an over the counter liquid called Proantinox (Cystex is the new name.) One tablespoon every morning and no more UTI's!!!!

    We bought it in RiteAide and Walmart.

    No... I don't think Namenda or Aricept work. The side effects are awful.

    Instead of aricept, my mom took Ashwagandha, a natural remedy. You can buy it in Whole Foods. My mom took the liquid. It tastes bad but it worked really well. I have written about ashwagandha in the pages of this blog.

    Instead of the excelon patch, my mom took Phosphyltidal Choline. It worked awesome to help her cognition.

    For her moods, she took Lithium Orotate 20mg with a little fish oil. It helped her a lot.

    I do recommend seeking out a Naturopath Doctor from the American Association of Naturopathic Physicians.

    Does your dad have a Geriatrician? A doctor who specializes in senior healthcare was a blessing. He helped my mom and didn't look at me like I was a lunatic.

    Acupuncture helped my mom a lot. I had found a study where folks who had acupuncture 2 times a week for 3 months averaged a 46% increase in cognition. Acupuncture gave my mom better days.

    Socializing is really important too. If you can get your dad to go to a day program, it will take away his boredom and give you respite.

    Stay strong... there are alternatives.