I'm a 30 year old African American woman and my mother, Mary Moore, was diagnosed with Alzheimers about 2 years ago. She was 56 at the time. I am her primary caregiver, although I do get support from our family.
Which of these best describes you?
I am a caregiver - I am my mom's primary caregiver.
If your loved one was experiencing signs of dementia, would you keep it a secret?
No - I didn't feel the need to keep it a secret. I talked to family about memory concerns I saw with my mom.
Who are you here for?
Parent - My mother, Mary. She was diagnosed with early onset Alzheimers at 58. She is now 60 years old. She lives independently in a 3 story family home. I spend time with her three times a week and take care of all health care and living logistics.
The thing I miss most is...
- Her, she's not who she was, I miss her personality, having a conversation, being an adult with mom, just able to have a dialogue. She's not there to talk about my wedding with, having her care about it, ask about the progress, things I'm excited or nervous about.
I first began to worry when...
- My grandmother came to visit, my father is deceased, we went to see his grave, mom was acting weird, not herself. Later when I talked with her about it, she had no recollection of the day and got angry. Also, her personality started to change - mom talking about wanting to be with someone and her loneliness for a romantic relationship. She lost 150lbs not on purpose, she wasn't dieting.
The hardest part of my today was...
- Spending time with her. The logistics are easier, then being with her and the disease. There is a level of guilt, I want to live a life, get married, have children.
I didn't consider myself a caregiver until I had to...
- I was doing errands for my mom, when I had to be her health care proxy
I have found the most support from...
- Alzheimer's Association, support group for young people whose parents have early onset, therapist, family - family helps with emotional support. However, I'm the only one in the support group who is the primary caregiver.
I have felt most abandoned by...
- The disease. My mom is no longer who she was.
The thing that would surprise most people about my day is...
- I feel better with her when other people are around, it's easier with another family member there.
The funniest thing that has happened was...
- Mom still has desire for romantic relationship and talks about it no matter who is around.
The gift of being a caregiver is...
- Recognizing my own strength and becoming someone who can balance life really well. I am able to balance care for mom with care for self. I'm strong enough to be there for her and ok to want my own life