Seeing 3 parents dealing with dementia and Alzheimer’s has been overwhelming and scary as I think about my own future.

Anonymous, Family member, Caregiver

Silver Spring, MD

It is profoundly difficult to process the fact that the love of my life for more than 50 years is both present and not.

Anonymous, Family member

Arizona

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

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

Challenging to care well for loved ones with dementia (finding a balance between providing care and respecting my loved one’s independence).

Denise, Caregiver

Scottsdale, AZ

Anonymous, Caregiver

Aptos, CA

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

When Alzheimers runs in the family and you see firsthand how the disease steals your loved one's memory away...SCARY!

Anonymous, Family member

Freeport, IL

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

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

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

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

Alzheimer's and dementia are life-changing not only for the person living with the disorder but also for their family. The parent/grandparent may have been the matriarch/patriarch/anchor for the family providing the strength, leadership, and guidance that fostered connections between family members through holiday celebrations and a shared family history. As the disease progresses, the roles of family members change, which inevitably affects the family's dynamics as decisions are made as to how best to support their parent/grandparent. The person with the disorder begins to feel less independent and as the disease progresses it can create anxiety for everyone involved. It takes a family with strong, positive connections to keep the family intact and continue to maintain family ties and ensure that family history and traditions are shared with the next generation. As heartbreaking as the disease is, accomplishing this creates a legacy for the family member affected by this disease.

Victoria, Family member, Caregiver

Burke, VA

Caring for someone with Alzheimer’s is sad and hard. It’s sad to see someone you care about change and it’s hard to be patient with them. It’s important to care for the caregiver (you) and take breaks when needed. Short breaks like a five minute time out and longer breaks like a respite outing are so important.

Anonymous, Family member

Poolesville, MD

Dad constantly tells stories from his life. Most are stories I’ve heard before he got Alzheimer’s but the stories he includes in his repertoire seem most important to him; shaped his life.

Nadine, Family member

Reston, VA

When a parent or grandparent gets Alzheimer’s it can be altering not only in a health sense but in the structure of the family as well. Many grandparents hold together the family unit so when one or both are diagnosed and start to suffer it tends to be the end of family gatherings and traditions.

Anonymous, Family member

Philadelphia, PA

I chose this word because it seems to apply so broadly across the spectrum of the affected community. It is obviously unfair to the person themselves, who loses a lifetime of memories, their valued independence, their ability to engage with those they love and so much more. It's also unfair to their family, spouse, siblings, children, grandchildren, friends, who lose the essence of their loved one, and are doing all they can to make them comfortable, while having to witness the tragic decline, their own lives compromised and with fears for their own futures. One builds a life of experiences, accomplishments and love over so many years, while Alzheimer's and other forms of dementia robs them, replacing a life of treasures with so much sadness, dependence, and grief. Moments of happiness, contentedness and connection remain the bright spots, along with our own memories to be cherished.

Jackie, Friend

Churchton, MD

As caregivers, we see that Alzheimer’s takes away memories and recognition, but it cannot take away love. Even when our loved one no longer knows our name, love is still felt through a gentle touch, a familiar voice, and daily care. Loving someone with Alzheimer’s means being present with patience and compassion, even when it is exhausting and painful. This love asks for nothing in return. Alzheimer’s changes relationships, but it also reveals the deepest form of love—one that remains when memory is gone.

Tsehay G., Professional treating people living with Alzheimer’s

Gaithersburg, MD