Who Knew?

Mom, exhausted one morning... waiting for Martha to drive her to "work."

Lewy Bodies Dementia is cruel, not only for the patient but the Care Giver. 

My personal goal over the last 3 years was to help my mom have more good days.  It's required vigilance on my part, watching and observing how everything from food to environmental changes affect my mom's mental state. 

Constantly, we need to modify our treatment plan.  It changes like the wind.  One day something will work and the next day, it won't.  It's becoming more and more difficult; fighting the battle with Lewy Bodies Dementia has compromised my health.

I'm not feeling great.  I don't know if it's my fight with depression, lack of sleep or if I have something going wrong inside my body.  It's a little scary.  I do find myself saying when I am worn out, "So what if I die... at least I won't have to worry about Lewy coming for me one day." 

It's horrible to lose hope.

Exhaustion did get the best of me.  The changes that Lewy brought with my mom's latest decline have begun to interupt my sleep once more.  I can't live without sleep and rest; it causes me to lose hope.

One of the Day Program workers recommended that we get a baby monitor so that I could hear my mom at night and know when she woke up.  My brilliant husband suggested that we check the 2nd hand children's store in our town.  We stopped in yesterday during our 3 hours of respite and low and behold, one sat on the shelf for $10!

Yesterday was a rough day for my mom.  She hallucinated a lot.  She was sleepy and slept most of the day.  When I got home at 2:30, I had her get up and get dressed.  I knew that I needed to tire her out.  My plan was to take her outside for a walk.

She wasn't able to walk in the sun, it seemed to make her stand frozen in place.  We walked around in the shaded part of the back yard.  I carried my music player around the yard with us so that we had background music to go along with all the birds chirping.  I sang and danced while we walked.

My mom even started to dance on the patio!  Her frown was turning upward into a smile.  She remembered the back yard.  We sat outside for a few hours, walking and sitting in chairs that we placed around the yard for resting spots.

Last night, it was tough to get my mom to go to sleep.  She was looking for Al, her brother who passed last month from his long battle with this horrible illness.  We didn't tell her that Al died, we kept it a secret because I worried that she couldn't process the news.  It is amazing to me that she sees Al all the time now, like she does my brother and father.

The baby monitor worked great.  I slept very well and actually woke up feeling rested today.  I'm sure this will help lower my blood pressure, a health issue that has recently made it's way into my life. 

Listening to my mom's light snore, I drifted off into a deep sleep.  At one point, I felt like I was sleeping in my childhood home with my mom in the other room snoring; such a soothing sound.

Mom didn't wake up all night.  My heart didn't pound and race in the middle of the night with every sound that I heard above my head.  No wonder my blood pressure is high these days. 

My husband got to enjoy a snoring concert between my mom and me.  We snored softly in unison and more importantly, we slept and I woke up feeling rested for the first time in way too long.

I highly recommend Care Giver's get a baby monitor, it will help ease the night time worry so that you can sleep.

Who knew?  I wonder why no doctor has ever recommended a simple device like this baby monitor to help me with my sleep disturbances?