Christmas with dementia: Families of Alzheimer’s patients reveal how cruel disease makes holiday ‘heartbreaking’ and ‘anxious’ – 16 million Americans will be caregivers this year, data shows

Millions of Americans dread the chaos that comes with spending the holiday season with family and in-laws.

But Esther Blair Schiffman, whose mother was diagnosed with Alzheimer’s at age 50, and Amy Hatkoff, whose sister died after a 12-year battle with the memory-robbing disease, would do anything to have those moments – both good and bad – bring back spin. .

Normally, Ms. Schiffman and her mother spend the holidays with her grandmother in Florida, where the whole family gathers, but the last few years have been different.

The 27-year-old told DailyMail.com her mother has been unable to travel for five years due to her advanced Alzheimer’s disease. Abbe, now 65 years old, lives in a hospice in New York.

Esther said this is the fifth Christmas her mother has not been able to celebrate with her family.

Meanwhile, Ms Hatkoff will spend her third Christmas without her big sister Susan, who was diagnosed with Alzheimer’s disease at the age of 65 and died in 2021 at the age of 77. She told DailyMail.com that she holidayed without her sister, who Amy said was like a second mother. you, it wasn’t easy.

Ms. Schiffman and Ms. Hatkoff are just two of the 16 million Americans who have cared for a loved one with dementia.

Amy Hatkoff, her sister Susan [pictured sitting] died after a twelve-year battle with illness and is spending her third Christmas without her big sister

6.7 million Americans are diagnosed with Alzheimer’s disease, a form of dementia, and as the US population ages, the number is expected to rise to 13 million by 2050.

Susan and Abbe are among the five to six percent of patients who develop symptoms before the age of 65 and are diagnosed with Alzheimer’s disease at a young age.

MIT scientists discover new way to reverse Alzheimer’s disease

The chemical compound prevents an enzyme in the brain called CDK15, which is linked to Alzheimer’s disease, from becoming overactive and damaging neurons, leading to cognitive decline.

And it can take years to diagnose the disease in its early stages because symptoms are often similar to other neurological diseases, such as: B. Aphasia, which affects speech, and multiple sclerosis, which affects the nervous system.

The delay can cause patients to miss early stage treatments and lose valuable time of clarity.

Esther said her mother once tried taking a medication to slow her cognitive decline, “but she was still a little far from even making it work.”

Ms Schiffman, now 27, was only in her teens when her mother was diagnosed 14 years ago.

The Schiffman family, including Abbe, usually travels during the holidays from New York City to Esther’s grandmother’s house in Florida, where the whole family vacations.

But traveling with someone with dementia is risky. Changes in a patient’s routine can cause them to become disoriented, irritable, anxious, and even violent.

Because of Abbe’s condition, Esther decided it would cause too much stress for her sick mother.

She told DailyMail.com: “The biggest problem with having a family member over the holidays who has Alzheimer’s or dementia is that you feel like it’s an unfortunate situation at such a happy time.”

“You don’t want to be a burden to other people who are trying to celebrate in the hall over the holidays.”

Abbé Schiffman [topmost person pictured] Her daughter Esther was diagnosed with Alzheimer’s disease when she was just 13 years old

Amy Hatkoff [pictured left] said for years that she could sense how Susan was feeling in difficult situations and provided a comforting hug and a comforting presence

This year, Abbe will be cared for by her team of health assistants, who will help stimulate her brain and look after her more basic needs such as eating and bathing.

Ms Schiffman said: “At some point we had to make a decision that she could no longer travel. “It was obviously a very difficult decision as we had taken her in for many years despite this illness, but as the as time went on, it became very difficult. .

“It’s caused by fear and you have to decide if it’s the right time to make those changes.” Even if it’s a tradition and you enjoy doing it, there are priorities, and if you’re struggling with someone who If you can’t do justice to traditions anymore, you have to make difficult decisions.”

Meanwhile, Ms Hatkoff (72) is preparing for her third Christmas without her sister Susan, who was diagnosed with Alzheimer’s in 2009 at the age of 65. She lived with the disease for twelve years before she passed away in January 2021.

In earlier years, Mrs. Hatkoff acted as a buffer between her sister and the rest of the world, especially during the holidays when music, bright lights, and large crowds caused Susan additional anxiety.

Despite Susan’s discomfort with the unfamiliar sights and sounds around them, Ms. Hatkoff said that they were able to communicate using a kind of “sister telepathy”. And Ms. Hatkoff could comfort her when she felt Susan was overwhelmed on busy days like Christmas.

Ms Hatkoff told DailyMail.com: “I will make sure to feel how she feels.” I’ll put my arm around her, hold her hand, or if I notice she’s uncomfortable, we can turn down the music or if there were Christmas lights, we can reduce the stimulation.

“She participated in the activities, but we tried to be sensitive and soften the environment during the activities so that she remained calm and could go with the flow most of the time.”

Eleonora Tornatore-Mikesh, chief executive of an organization called CaringKind which trains and supports carers of loved ones with Alzheimer’s disease, told DailyMail.com: “Appreciate and enjoy all the beautiful moments.”

“There are so many people with Alzheimer’s who have taught us that life is beautiful, even with a diagnosis of dementia, and they try to find all those beautiful moments.”