Stolen Years

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Local family copes with early-onset dementia with fortitude & love

Ruth Brodsky I Contributing Writer

Life changed dramatically for the Bloombergs of Farmington Hills in 2012. That’s when husband Erwins behavior changed significantly, leaving wife, Mickey, and their children perplexed and troubled.

“I was convinced he must have a brain tumor causing his erratic behavior the past few months.” Mickey said. “He quit his job, changed from a very social person to a recluse, gave a way thousands of dollars to someone in Africa and totally changed his eating habits.

“It took over a month to get an accurate diagnosis of my husband’s health,” said Mickey, who kept insisting her husband get an MRI to reveal the problem.

The situation became aggravated when Erwin threatened to do bodily harm to himself two years ago. Authorities were called and he was taken to the emergency room at Botsford Hospital in Farmington Hills.

“They kept him for 24-hour observation, diagnosed him as being bipolar and medicated him,” Mickey said. “I knew the diagnosis was wrong. He never showed exaggerated mood swings. I wanted him to have an MRI of his brain to find the brain tumor.”

Botsford didn’t keep Erwin because he was too young for the hospital’s geriatric program, so he was transferred to the Samaritan Behavioral Center in Warren. He was placed in the geriatric ward, but, at age 59, was considered too young to remain in the program.

“Beaumont Hospital’s adult inpatient psychiatric care was the next stop for Erwin,” Mickey said. “The only problem was that this was a volunteer program and patients could sign themselves out at any time. He was given more medication, but there was still no improvement.

“I ranted and raved again and this time they took an MRI of Erwin’s brain. The doctor reported that I was wrong — Erwin didn’t have a brain tumor, but the frontal lobes of his brain looked like Swiss cheese. Erwin was diagnosed with Frontotemporal dementia (FTD).”

In FTD, portions of the brain’s frontal and temporal lobes atrophy. These brain locations are associated with personality, behavior and language. It is one of the few dementias that are seen in people under 65 (mostly in ages 40-64), posing challenges in family, work and financial areas. An accurate diagnosis is important to understand the symptoms, plan for care and select treatment options.

Easy To Misdiagnose

“In the earlier stages, many patients are misdiagnosed with a psychiatric disorder,” said Daniel Meknes, M.D., professor and chair of neurology, Oakland University William Beaumont School of Medicine. “Depending on the affected regions, some patients lose language fluency, while others have dramatic personality changes and may be socially inappropriate or emotionally apathetic.”

In one month, the family went to four hospitals before they had an accurate diagnosis.

“But we’re among the lucky ones,” Mickey said. “Some people in our support group didn’t get a diagnosis for over two years.”

Erwin voluntarily signed himself out of the Beaumont facility. Psychiatric Services at St. John Macomb-Oakland Hospital in Madison Heights was willing to take him into their program until the family found a more permanent residence.

“Beaumont gave us a directory of facilities that would accept Erwin, and my daughters Audrey and Sara and I started making calls,” Mickey said. “Sara searched for help using Google and found the Alzheimer’s Association Greater Michigan Chapter in Southfield. She asked for help and they sent a social worker to my home to work with us.

“We were surprised to find that most facilities and programs aren’t licensed to care for patients with early-onset dementia,” Mickey said. “Erwin was too young to enter their programs.”

An Alzheimer’s Association social worker listed a few local places equipped to take Erwin. She also explained the disease so that Mickey and the girls had a better idea about what to expect. She provided information about requirements for financial assistance and recommended participating in an early-onset dementia support group.

“The Alzheimer’s Association has many resources for families so that taking care of someone with dementia is not so devastating on the family,” says Gayle Burstein of the Detroit chapter. “We know there are very few programs for early-onset dementia, and there is no magic pill for the disease. Families need help; they can’t do it by themselves and, fortunately, we can help.”

Erwin now lives in an assisted living facility in Farmington Hills; Mickey visits him every day. She does receive support from Rabbi Elliot Pachter of Congregation B’nai Moshe in West Bloomfield.

“I stay in touch with Mickey,” he said. “Mickey’s parents belonged to B’nai Moshe, and she and Erwin maintained the tradition. Erwin was in the Men’s Club and willing to do whatever was needed. Both girls had their bat mitzvahs here and continued their interest in Jewish education. I visit Erwin from time to time and have short, mostly one-way conversations with him. It’s very sad.”

Adult Children Blog

Audrey Bloomberg, 29, was working for Hillel in 2012, traveling to different college campus Hillel programs when her father was diagnosed with FTD. Some months later, she decided to move back to Metro Detroit to be closer to her family and to become active in the Jewish community.

“This past December, my mom, sister and I attended a holiday party of our support group at one of the member’s home during which the adult children separated themselves from their parents,” Audrey said.

The lament that “no one their age understands this” repeated itself among the young adults, ages 20 to 33. The group grew motivated to raise awareness, resulting in a blog, Dementia Stuck in Between.

“We came up with the title because each of our families has a parent with a diagnosis and the other parent is a caregiver,” Audrey said. “As adult children, we are stuck in between being a child and an adult, sometimes taking on the role as caregiver for our ill parent and other times taking on the role of adult parent for our healthy parent. In between, we are trying to live our lives and establish our careers and families while fulfilling these roles. We are stuck in between.”

The blog has more than 13,000 page views and received comments from as far away as Denmark. Today, Audrey is the events coordinator for the Greater Detroit Chapter of the Alzheimer’s Association.

From Audrey’s blog post on Feb. 6, 2014: “I’ve done a lot of things the past 2 years that most people my age have not. I am proud of that, but at the same time I miss the naivety that I had … I miss talking to my dad, watching Red Wings games with him coaching from the couch, I miss his constant questions about my life, I miss his protective nature …”

“Right now, five of us from the support group write for the blog,” said Sara Bloomberg, 28, of Birmingham, who works for the global public relations agency Weber Shandwick. “Our goal is to have the blog serve as a resource for others.”

From Sara’s blog post, April 13, 2014: “As this awful beast of a disease progresses, we continue to see changes in the good man … Recently, Dad stopped talking and he barely smiles. He doesn’t know how to do a lot of things he used to … As we live with this new normal it’s sometimes hard to remember the man who he was.”

Legal Considerations

When Mickey Bloomberg applied for disability for her husband, Erwin, Social Security insisted she needed to assume guardianship to receive the disability checks. She had all the legal papers, including letters from doctors confirming Erwin’s inability to take care of himself. But now she needed to go to Probate Court and apply for guardianship.

It was a simple procedure, but it was one more unfamiliar task that added to her anxiety. Now she visits Probate Court yearly to maintain guardianship.

“It is difficult and stressful to make these kinds of decisions especially when the goal is the safety and well-being of a spouse,” says Don Rosenberg, a Troy elder law attorney and former president of the Alzheimer’s Association Greater Michigan Chapter. “I often tell clients to plan proactively, prepare for the unthinkable and to work with an elder law attorney so a family’s financial goals are also met.”

Rosenberg recommends families have on hand updated copies of these core documents and work with an elder law attorney for help navigating through the complicated laws.
• Durable power of attorney for health care
• Durable power of attorney for financial decisions
• Distribution of assets after death

Insidious Disease

Most families who receive the diagnosis of Frontotemporal dementia are told there’s nothing that can be done. At this time, there is no cure.

“FTD is insidious and likely causes are due to genetic mutations that took effect during brain development,” said Rhonna Shatz, D.O., director, Behavioral Neurology, Clayton P. Alandt Chair of Behavioral Neurology, Henry Ford Hospital, Detroit. “It doesn’t necessarily run in families, but there is a genetic risk factor.”

Shatz explained that people with a learning disability are more vulnerable to early-onset dementia because their brain is already stressed trying to compensate for their learning deficit. The brain’s frontal lobes are responsible for executive functions including planning, making priorities, organizing and controlling our behavior. For people with FTD, these abilities are impaired together with an inability to communicate and recognize faces.

People with FTD make up about 10-14 percent of patients with dementia.

“There are warning signs that may help lead to an early diagnosis,” Shatz said. “These include building multiple large collections, hoarding and becoming pack rats. They also frequently engage in new food rituals, have horrible table manners and tend to eat more food than normal. They often lack impulse control and are often blunt and opinionated in public.”

We all develop pathologies as we age, but our brain continually compensates. Alzheimer’s, for example, provides clinical signals such as losing the ability to communicate and loss of short-term memory. FTD affects another system in the brain, which is a group of functions called executive functions needed on a daily basis. It’s not memory loss, but an increasing inability to get simple things done.

A high degree of anxiety is also characteristic of FTD to the point where everything makes a person uncomfortable, even meeting a new person.

Although there is no known treatment for FTD today, research continues.

The Bloomberg family is participating in the upcoming Alzheimer’s Association Walk to End Alzheimer’s, Aug. 23, to raise research funds. It’s being held in 11 Michigan communities and 650 communities nationally. To participate or donate to the Bloomberg team, click here, or call the Alzheimer’s Association Greater Michigan Chapter at (248) 351-0280. ■

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