“No person or loved one should lose their individuality or independence to have their family milestone erased”
Alzheimer’s isn’t stopping and neither are we.
Join our team Dulce De Coco in honor of our mom, Yolanda(Coco)Santos, walk alongside us or donate?
As a caregiver I have suffered emotional and financial anxiety, sleeplessness, a feeling of imprisonment, Depression, alone, with my siblings refusing to see or acknowledge the help me and Gabriel desperately need.
Statistics show, as a caregiver, my life expectancy is minus five years due to the stress of caregiving.
My care for mom gave me knowledge, that can benefit other caregivers, to prepare and embrace the ones they love. To provide the best life left on this earth, with dignity. Alzheimer’s is not an individual disease, It's a family one. As a daughter, I've seen how Alzheimer's takes the sweet part of your soul and turns it into a mean, aggressive person; little by little; taken her beautiful vibrant spirit until one day mom can no longer hide and is unable to fight. Reality starts setting in, mom can understand one day, but gets confused the next. How simple everyday life we take for granted becomes unbearable, unable to figure out why, frustration and fear, become a scary reality for loved ones. Shame in there eyes, humiliation, for what they do, and having to rely on us for most help. The falls continue to happen, mom's stubbornness refusing to use a cane or walker. Mom hiding her bruises, so I don’t worry. Mom’s instability and strength is deteriorating.. The confuse look on her face when trying to squeeze the toothpaste out of the tube; Or how to turn a light on.. It's not easy to watch, and it won't be easy to forget. I ask for strength compassion and patients. I promised mom I would care for her, for as long as I could, and will achieve all I can to make mom feel loved and to never feel alone. Essentially, finding ways to communicate better, with non-participant family members, who turn a blind eye, refuse to listen or alleviate the burden and hardships of families caring for loved ones. Family members need to educate themselves or convey with primary caregivers once a week to understand their needs and alleviate the on going pressures. To support respite care or financial help.
The result could have catastrophic results in the end for everyone. My biggest challenge has been my four siblings. It baffles me the lack of trust or denial of what Is best for mom, saddens me. Children of a parent going through this disease please listen, have compassion, put all differences aside for mom or dad. Don’t add to the one caring for your parents stress. Remember it’s not what is convenient for you or having control over the help you provide. Make it easy and listen. Alzheimer’s is unpredictable, I don’t set the narrative or make plans for tomorrow. I take one day at a time, and I know it will get worse for us.
In the beginning caring for mom; I called it my curse, my burden, I resented mom and her selfish children. NOT today! My blessings; an acceptance, with love and forgiveness, not resentment or hate. I give thanks to my higher power everyday, and the organizations-Central Coast Caregivers and Alz.org.without these organizations i would be lost and hopeless. The support groups and online classes helped me immensely. Walking to end ALZ is my way of paying it forward and giving back.
As I embrace my new found life, a new reality I discovered, emotions I never felt before. Mom made It possible to face my anguish in me; (I have depression, started age 5), I put everything on hold without realizing I shut off the voices in my head. I am not crazy lol, well maybe a little. My beloved mom has encouraged me in ways I never imagined possible. My sweet and kind mom guided me, to my peace without chaos, Thank you mom. I'm no longer blind, I see the beauty and give kindness and understanding to those who don’t.
My son Gabriel who is sixteen has stepped up and helps me, cares for his grandma, he started around twelve or thirteen. Gabriel has become caregiver number two. He is an incredible caregiver with kindness and love. Grumpy sometimes, and it's ok, i’ll take the help anyway I can. Thank you Gabriel.
I will continue to learn, and volunteer in honor of all the loved ones lost to Alzheimer’s and I will pay it forward to help caregivers beginning there journeys to the unknown. To be mom’s voice, and advocate.
Won’t you please help Stop Alzheimer's and Dementia? with a donation; every little bit helps. Please send to everyone you know, share my story and raise awareness and help fund a cure.
I LOVE YOU MOM.
Dulce De Coco-Candy Gutierrez
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