January 25, 2014

Dementia Takes Away so Much More Than Memory

Liz Cummings
Photo ©Doug Webb
(Publisher’s note: Dementia takes more than your memory. The person I lost to Dementia was over a stroke. She had begun to be forgetful for her short term memory but it was not cause for  immediate concern because she didn’t seemed to mind and it had to do with things that were easily coped by her and family, but mainly me because I was closer to her. I was grateful for every year every month I had with her. After that stroke she went down so fast. About a month or so before the year of the stroke she was dead. Those last 3 months or so were so hurtful to see her that way. For her swings of emotions. She loved me, then she hated me, I was a mess and continued to be a mess way after her death. I start ed community service after getting out of the hospital myself which I blamed on the experience. Dealing with other people’s problem was god sent. I find my self forgetting things and you know the first thing on my mind. I really would not want to be around that way, but I wanted to have my mom around in any way. I Instructed the doctors to do all science could do for her,to keep her alive short of a coma. I knew that my mother would know the time and she did pretty much to the day. Still she looked at me, because every time I kissed her I will whisper to please not leave, I needed her. When I saw her suffering I told her it was ok if she went. I told her she was not going to be alone and I will not be alone if she stayed by me. Her eyes opened in shock and then she close them as my message was stored in her damaged brain. Dementia to those family members who have someone, I know your pain). 
Adam Gonzalez

  (Editors Note: This is the second article in a Next Avenue series by Dan Browning about his family’s experience coping with frontotemporal dementia or FTD.The first article was “From Bizarre Behavior to Dementia Diagnosis.”)

When I learned that my wife Liz had the behavioral variant offrontotemporal dementia, a progressive degenerative brain disease formerly called Pick’s disease, I had been covering federal courts in Minnesota and following up on a number of white-collar-crime investigations that I had reported for the Star Tribune newspaper in Minneapolis.

My supervisor, Maureen McCarthy, expressed sympathy when I told her about my wife’s diagnosis. Over lunch that day, she went out and bought me a copy of The 36-Hour Day, A Family Guide for People Who Have Alzheimer’s Disease and Related Dementias, and Memory Loss, by Nancy L. Mace and Dr. Peter V. Rabins.

Maureen knew the book would be a life preserver. Her mother had suffered from vascular dementia. I had only a vague recollection of this.

So many people around us have lived through the hell of watching a family member fade before our eyes. But I had thought I was immune. I knew that some unlucky souls would have to deal with ailing, elderly parents. But not me, I thought. My parents both had died without having to deal with the ravages of the disease.

Liz’s diagnosis in August 2012 —  at the age of 51 — shattered that illusion.

A Personality-Altering Disease

As a reporter, I’m used to raking up large volumes of material on a variety of subjects. I quickly learned that frontotemporal dementia (FTD) is one of the leading causes of dementia in people between the ages of 40 and 60.

Some 50,000 to 60,000 people in the United States have it. Probably more. Experts believe it’s often misdiagnosed as early-onset Alzheimer's disease, or psychiatric illnesses like bi-polar disorder or schizophrenia.

The diagnosis matters. The same medications that slow the progression of early-onset Alzheimer’s disease can worsen the symptoms in patients with FTD. Both are brain-wasting diseases, but not all dementias are created equal.

While Alzheimer’s erodes memory, FTD leaves it relatively intact, at least initially. It alters the personality, killing off the checks and balances that keep us from disrobing in public or saying something off-color to a boss or making other socially embarrassing mistakes. There are four variants of FTD that manifest in distinct ways.

Until the past few years, cognitive tests were the primary means of diagnosis, together with blood tests used to rule out other, possibly treatable illnesses such as Lyme disease. Now, high-power brain scans help doctors examine the damaged neurons in the frontal and temporal lobes of the brain. The tests aren’t foolproof, and a definitive diagnosis still can’t be made without an autopsy. But in combination, the brain scans are largely accurate.

The 36 Hour Day deals mostly with Alzheimer’s, but it’s full of great advice for caregivers regardless what type of dementia they’re dealing with. And its message was strikingly clear: I was going to need help, and fast.

The Smartest Thing I Did

I consulted Warren Wolfe, who had covered senior issues for the Star Tribune for many years and whose father had suffered from dementia. So Warren knew the ropes personally and professionally. He came prepared with a list of names and phone numbers, advising me to call a lawyer specializing in elder law. I stalled, fearing the cost.

I eventually called Amy Dawson, a Minneapolis lawyer we’d used for my son, who has autism, and asked her to rewrite our wills, draw up powers of attorney (that would let me sign documents on Liz’s behalf) and prepare “Do Not Resuscitate” documents, also known as living wills.

Amy said she had to be certain that Liz understood what she was doing. She brought in a witness as she quizzed Liz about the documents. Liz confirmed that she understood, and signed. It’s the smartest thing I ever did. If I had waited much longer, I don’t think Liz could have convinced anyone that she knew what she was doing.

“Go Home and Die”

While Liz signed all the papers, she also disputed the diagnosis, as is common. She said she wanted a second opinion from the famed Mayo Clinic in Rochester, Minn.

Liz's primary physicians warned us that Mayo would be expensive and that she had already undergone the Cadillac of tests. But they said it was reasonable to get a second opinion, especially if Mayo would enroll her in any trials they had going on, which they'd pay for.

I called Mayo and was told that if they accepted Liz and expedited the case, we’d hear from them in a few months.

“What did your primary physicians tell you?” the intake clerk asked.

I thought about it for a moment, then answered: “Go home and die.”

As we waited for word from Mayo, I read The 36 Hour Day voraciously and everything else I could find on FTD.

A few months later, I got the call. The Mayo Clinic would review Liz’s records in January 2013.

Hope and Fear

I put everything on hold. Maybe the Mayo Clinic would offer some hope that we hadn’t considered.

It seemed unlikely. Liz’s behaviors seemed to be worsening. She spilled things more often. She gave out her checking account information over the phone to scammers who told her the government wanted to give her money.

A singer and a pianist, Liz could no longer perform at her high musical standards, forcing agonizing conversations among her longstanding musician friends about how much longer they could carry her.

I did some research into the experiences of other people with FTD.

Reality sunk in. I knew that I would have to prepare for the worst. I scheduled surgery to repair a torn rotator cuff, anticipating that I might have to lift Liz in and out of the bathtub at some point.

A Close Call

As Liz drove us to pick up our Christmas tree in December 2012, on a cold and icy day, she looked for her purse on the floor of the van. We were approaching a busy intersection. I shouted at her to pay attention, but she continued to rummage through her purse.

Our kids howled! Liz slammed on the brakes and we skidded part way into the intersection. She didn’t seem to understand why we were upset.

I knew then that it was futile to go to the Mayo Clinic. But we went anyway a few weeks later.

It was a visit that would dramatically alter Liz’s daily life, and mine.


Posted by Dan Browning,
Dan Browning covers health care and medical research for the Star Tribune in Minneapolis. He dedicates this series to his wife, Elizabeth Cummings Browning, a bright, loving, mother and talented singer-songwriter who was diagnosed in August 2012 with probablefrontotemporal dementia (FTD), the most common form of brain wasting that strikes people under 60.

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