I even use different Blood Pressure monitors on her in an attempt to see if the one I use on her was broken. It's not. My mom's blood pressure is wacky and we are beginning to believe that the wild fluctuations are being caused by Lewy Bodies attacking her autonomic system.
My mom has good days which are breaths of fresh air that restore my hope. During the good times I am able to rest and I can handle the stresses of care giving and all the craziness that comes with it. However, we have been having more not so good days since my mom's ER visit and overnight hospital stay.
Night disturbances with a flavor of fear of being abandoned are the antagonist in the new phase of my mom's illness. A year or so ago my mom had night disturbances worse than she's experiencing today; regardless, any night disturbance is a drain of my patience.
Yesterday, I woke up to my mom fully dressed, clomping around in her heavy shoes, trying to find her way home at 5am. I was tired. I had my own bout with insomnia and felt like I had just fallen to sleep when my mom woke me up in a panic.
"How do I get out of here?!" Are the words that my mom greeted me with, as I reached the top of the stairs.
Our day was not starting out very well and it only got worse. Blood Pressures were back in the 200 range. I was able to get it down to 160/68 just once during the day, but that was short lived. I cried. I cried a lot.
My blood pressure was up there to the point where I actually had a headache. I rarely get headaches. I was having hot flashes, another phenomenon that I rarely experience during the day. I cried.
My mom's blood pressure went up and up. The more I cried the higher her pressure rose. I cried more. I felt lost and out of control. I didn't want to be a care giver anymore. I was done. I cried.
I ate celery. Lots of celery. I even attempted to get my mom on Wii Fit, using the balance games to give her something to keep her eyes focused on something other than the trees outside. Trees where she often sees visions of my dad, my brother, her miscarried baby (she named him Dennis) and an assortment of people that she had known throughout her life.
"Oh, there's Angie Matolla!" She squealed at one point.
"Bob Brest's wife! She is blaming me for things, she's talking bad about me. I didn't do it!" She proclaimed moments later, becoming upset, raising her blood pressure into the 200's faster than a formula race car can go from zero to one hundred MPH.
My attitude and mood affect my mom's blood pressure. If I'm stressed out, which I am, my pressure goes up easily and in turn, my mom's does too. It's a vicious cycle. I feel like I'm back where I was before I had help coming in to our home and before my mom was acclimated with "school."
Mom is missing school. She is insisting on going back on Tuesday this week, she calls it "Kindergarten" and she wants to go back. She had fun and the stimulation definitely helped to keep her in a happy mood.
Personally, I struggle with letting go and knowing when it's time to have my mom committed to a nursing home. I worry about her going to a home; I worry that they'll drug her to keep her quiet. I worry that the home doesn't understand Lewy and will give her anti-psychotics that send her deeper into the grips of her mental illness.
I am struggling. Part of me wants to let go but a bigger part of me won't allow me to do it, not yet. When I'm rested, like I am today, I feel that I can keep going and fighting back Lewy, giving my mom just one more good day before the end.
Care Givers who have had to make this decision tell me that "I'll know" when the the time is right, when I will know it's time to move her to a nursing facility. I love my mom and letting go is difficult; I feel like I will have failed if I quit on her.
I have turned my tears into prayer, each tear drop I shed, I pray a little prayer, asking God, the Universe and any supreme being that will listen, to give me the strength to get through my mom's end days with peace and grace.
Letting go.... when do I know it's time?
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