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 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.