Our Collective Story
Absence
My wife Penny is in the very late stage of Alzheimer's and what's hardest these days is that she is there but she is not. Until recently, she would sometimes react with a laugh or a word to something I said or read or sang to her. That has become less frequent and now I mostly feel her absence when I sit with her. It's been a slow fade over many years, but it is hard to see her slip away.
Kevin, Family member, Caregiver
Rockville, MD
Hard
Hard to maintain dignity, hard to find help, hard on relationships, hard on caregivers, hard to understand, hard to forget and forgive violent actions, hard to keep loved ones in the best situation and surroundings, hard to reach them, hard…
Carol Hughes, Family member, Caregiver
Winter Park, Florida
Unknown
Living with my mom's Alzheimer's for the past several years has taught me that it is the disease of the unknown. I don't know what she'll remember. I don't know how she will react. I don't know if it will be a good day or a bad day in memory care. I don't know if she'll greet me with a smile or a frown when I visit. I don't know if she'll know who I am. I don't know if she'll make it much longer. I don't know when I say goodbye if it's going to be for the last time. The world of the unknown is not fun. What I do know is that I'll always love my mom and somewhere deep inside her heart, even if she doesn't remember, she will always love me.
Mike, Family member
Austin, TX
Unpredictable
I've been trying so many suggestions in living with my loved one. Treating him with patience and loving kindness doesn't seem to matter anymore. I must remember to treat myself that same way. There is no consistency in his behavior or responses. We have good days and bad days. I rarely can reason things out with him. With the help of anti anxiety and memory medication, he is better some days. On bad days I feel I'm the one who needs anti anxiety meds. We all are living an unpredictable future but with dementia, it's not going to get better. My best advice is to accept and not fight. Life is too short.
Anonymous, A wife who loves her aging husband with dementia
Seaside, OR
Unforgiving
I choose 'unforgiving' because Alzheimer's strips the person of all that they are. Layer by layer, like an onion until only the body remains. Leaving quite literally, a empty shell of what the person once was behind. Alzheimer's has no regard to what a person may have done to try to prevent or ward off the disease. No regard to race, ethnicity, socioeconomic status, family, relationships or future plans. Unforgiving in its path and progression.
Janet McFarlane, Family member
Pendleton, OR
Angst
I am an Occupational Therapist who specialized in Memory Care and loved my work and how I was able to help patients, families and their caregivers. I was also very involved with my local Alzheimer's Association Chapter. Then my mom developed Alzheimer's. She was also an OT and knew what I did in my career. She fought me every step of the way in my attempts to help and support her and my family did not appreciate my knowledge nor my insight into mom's needs. So I learned that what I could offer as a professional I could not offer to my own family. I learned to take a back seat into all of it just to preserve the relationship with my family. It was hard to watch knowing what I knew and being unable to help. She passed away in 2019 and I still grieve.
Anonymous, Family member, Professional treating people living with Alzheimer’s
Denver, CO
Helpless
The person who has a alzheimer or a dementia is helpless within its own mind for a stability. As my mother has dementia I know she is fighting daily for that stability now but she can't do it at the end. (Original entry: Helpless within)
Elma Tamanna Khatri, Family member
New Delhi, India
Fascinating
The disease is fascinating in that it affects people differently in so many ways from the difference in behaviors, to speed of decline, to moments of clarity, and the list goes on and on.
Anonymous, Family member, Professional treating people living with Alzheimer’s
Eden Prairie, MN
Overwhelming
The feelings of caring for/knowing a family member living with dementia are overwhelming. Your mind thinks, this is the same person you've always known, treat them and speak to them the same way you always have, yet in reality you have to learn a new way of speaking to them, a new way of taking care of them, a new way of interacting with them. Their daily routines change and so do yours. Their responsibilities become your responsibilities, yet you are still expected to take care of yourself, and it becomes harder and harder. Then at the same time you start to feel selfish for feeling stressed because you feel they are the ones going through this, not you so you should be more grateful. It's all one huge circle and I can't not help but feel overwhelmed.
Laura, Family member
Pennsylvania
Improv
Having worked in the field of aging and creativity for 40 plus years the word Improv comes up all the time. There is no sense disagreeing with someone who has Alz. You have to pivot, improv and use creativity to help your loved one. It's always a dance with words and actions. As a visual artist I create programs for family that gives them a way to connect with their loved ones. I make art that is very personal and I hope opens up a dialogue with my viewers. My current project is Who Cares? painted portraits of caregivers and their stories on a monthly podcast. It's my way of giving back to the community.
Patricia, Professional treating people living with Alzheimer’s
Rockville, MD