Dear Jann Arden,
Thank you for bringing to light the topic of what it's like for a family member to witness a love one experiencing dementia!!!!
Growing up I lived with my parents and my lola (lola is the Filipino word for grandma). My lola was my best friend, and confidant. She was the person I use to go to every time I got hurt in school by bullies and my teachers. The reason I use to go to her is because I felt like she loved me and cared for me unconditionally. When we lived in a small 2 bedroom duplex she was my room mate and my brother's room mate. She took care of us when my parents were at work, and was there everyday when we were little to pick us up from school.
Looking back, I didn't realize until I grew up how lucky my family and I were to have her in our lives on a daily basis. We were indeed blessed to have grown up with her, to love her, and to been cared for by her.
About 10 years ago she had a stroke that triggered the onset of her dementia. We noticed changes in her, not just in her mobility, but in the way she sometimes forgot us, forgot where she was etc...
But what made me sad the most was to see my lola who was independent prior to her stroke, become dependent upon everyone to make sure her daily living needs and wants were met. For example, she loved baking and gardening before her stroke. After her stroke she forgot how to bake, and garden. She often complained about not remembering where she was. Sometimes she'd mix up our names or forget them all together. Prior to her stroke she never looked lost. After the stroke she always said she felt lost.
Because the stroke effected her mobility and because our home wasn't designed to be wheelchair accessible. My dad and I had no choice but to put her in an nursing home. We visited her everyday. We took time from our busy work schedules to come to the nursing home so we could be with her during meal time encouraging her to eat her food. We'd talk, listen and share stories with her. But things weren't the same. She couldn't remain focused on our conversations for a long period of time. I felt like I lost not just my lola, but the opportunity to feel safe enough to discuss my feelings within my family since the only person I knew I trusted with my feelings was her. I had lost my best friend.
My family and I had to learn deal with the grieving process, and learn to live in the now. We had to learn how to cherish all the small moments of joy with her and sear it into our minds.
My grandma lived for 7 years in her nursing home. During the last year of her life her dementia changed. She developed Rapid Acting Dementia, which made all of us miss her even more. For me I found the difference between regular dementia and rapid acting dementia is time. With regular dementia we had a bit of more time to adjust to all the changes within her. With Rapid Acting Dementia we had no time to adjust, no time to really grieve, very few moments left to cherish, and a lot of saddness to deal with. No one helped us cope with what was happening to her. I felt trapped within myself and angry that none of us could make things better for her. None of us could save her. I felt helpless.
I wish that we as a society would recognize how a person with dementia (including Alzheimer's) dies twice. The first death is a mental one since they are no longer the same person we once knew. The second is a physical death. Both cause love ones to grieve for them as they once were. I wish there was more support for people whose love ones have all forms of dementia.
Recently I was at Walmart buying a greeting card for a friend. I looked at the cards I saw one for people whose love ones have Alzheimer's. If I had gotten a card like the one I saw at the store, that would have made me feel supported through the grieving process a bit better.
Thank you very much for sharing your story on social media and for bringing up the topic of supporting those affected by Alzheimer's and other forms of dementia to light!!!!! It isn't easy losing someone you love to that horrid disease! I wish you best of luck in supporting your mom through this difficult process!!!
Sincerely: Mary
