I Miss My Sister

By Virginia F.

My older (by one year) sister, Lucyann, now 60, was diagnosed when she was 58. She was a well-liked (by peers and students) professor, a great daughter and the best sister anyone could have. She cared for my dad during the last 10 years of his life, while she was still teaching and/or working at the university, until his death about four years ago.

During the last three years, we started to notice that she was angry a lot, particularly with my Mom, for whom she had absolutely no patience. She would not go to work and claimed headaches and/or migraines. She took a lot of naps and always went to bed early. She would spend a lot of time watching TV, the same happy-ending movies or tv shows, over and over. She was a great baker, but her cakes were definitely not the same. When she stopped paying her bills, we realized something was very wrong and we convinced her to see a psychologist. To make a long story short, the psychologist ordered a lot of tests and referred her to a neurologist, and there it was -- FTD. She retired from work and applied for Social Security Disability, which was granted about 9 months later. She cannot live with my mother, and my mother cannot live alone, so we had to separate them.

My Mom lives with my brother because she cannot live by herself anymore. Social Security is not enough to cover my Mom’s bills, so we are selling her house to pay for her care. Lucy has reached the stage in which she cannot be alone either, so she spends time in Puerto Rico, Tennessee and Massachusetts where some of my siblings and I care for her. We are still figuring her out. Her diet has changed -- sweets, soda, pizza and hot dogs have become her favorite foods – so she has gained weight and we had to upgrade her wardrobe. We never know when she will agree to exercise (mainly walk), but she will always agree to go shopping or to the movies. She has lost empathy and there are absolutely no filters, especially between brain and mouth. There is no secret she is able to keep.

I miss her phone calls, advice, hugs... I miss talking to her. I can’t figure out what she is thinking when she is staring into space, and I think that she is actually unable to tell me. I hope she is somewhat happy. I hope she feels safe and cared for. I hope she feels how much we love her.

  Dementia Signage for the Home

Living with Alzheimer’s – Four short films to raise dementia awareness

Bestselling author (The Forgetting) and Alzheimer’s expert David Shenk commissioned four original short films to raise awareness about Alzheimer’s disease. Italicized comments are by The Caregiver’s Voice.

Click image to watch video on host website.

 

A Place Called Pluto, a 10-minute film by Academy-Award®-nominated director Steve James (Hoop Dreams, The Interrupters)

 

Shenk’s book “The Forgetting” inspired James to make “A Place Called Pluto.” “The film … tells a complete story–a snapshot of this time and place coping with this illness,” James says. “It’s a satisfying story, a hard story, and a moving one, I hope.”

 

Greg O’Brien, long-time Cape Cod reporter and newspaperman, has been diagnosed with Early Onset Alzheimer’s. Greg is facing the disease and his imminent decline by writing frankly about the journey. He narrates the story.

 

With all the research pointing to higher-educated people and/or those who use their brains for complex tasks and thought, how can this reporter be diagnosed with early-onset Alzheimer’s? Sometimes, no matter what we do, we cannot stem the destiny of our genes, as O’Brien knows. I admire his fortitude to run several miles at dusk to fight against the “Alzheimer’s monster” that overtakes him in the evening. Truly moving commentary from his wife and children.

Click to watch video on host website.

 

De ‘mem’bunce (The Remembrance), an 8-minute film by Academy-Award®-winner Roger Ross Williams.

 

The Gullah, descendants of slaves residing in “the Lowcountry region of South Carolina and Georgia,” are a proud people who have historically refused outside help. Overcoming this stigma, Lou Ethel Hill-Ford and her family seek assistance from an innovative Alzheimer’s center in Hilton Head.

 

Lou Ethel forgets what she’s saying in mid-sentence yet can sing all the verses of Amazing Grace. A strong woman who raised a family and walked six miles to church each Sunday, now she needs help.

Alzheimer’s is the greatest thief of the rich and the poor,
the educated and the uneducated.
It is important to seek help, as we cannot navigate this road alone.

My Little Friends, by Academy-Award®-winner Megan Mylan.

 

In a custom-designed facility in Mt. Kisco, New York, a very special program focusing on inter-generational care brings elders with dementia together with young children. The kids look right past the dementia, connecting instead with the people who have gotten lost underneath.

 

Truly powerful and mutually beneficial for giving purpose to elders with dementia while giving kids the loving attention they need to grow.

 

Let the Band Play On, by Emmy award-winner Naomi Boak.

Twice a month, the dance therapy group Rhythm Break Cares leads a ballroom dancing session at the 80th Street Residence, an assisted living facility for people with dementia in New York City. Residents, health aides, and family are all transformed by the power of music and dance.

 

For more information about all of the films, visit the “Living with Alzheimer’s Project launches with new documentaries.”

 

Created by David Shenk in partnership with Cure Alzheimer’s Fund, this “Living with Alzheimer’s” project was funded by the MetLife Foundation.

 

- Dementia Signage for the Home

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