Early Onset Dementia- Not A Mid Life Crisis

When Marion’s husband Dave started behaving poorly she was frustrated. She assumed he was having a late mid life crisis. At 59 years, old Dave was an engineer for a major oil company. He had been with this company most of his career, about 40 years. But his job was in jeopardy. Dave was showing up late for work. And according to a co-worker who spoke with Marion he was a “bit off” sometimes. When asked what she meant by this the coworker replied.

“Sometimes he says something that makes no sense at all. He also forgets a lot of meetings and then gets angry saying that nobody told him there was a meeting scheduled. He picks fights with coworkers and blames everyone else when he drops the ball. I am afraid he is going to be fired soon.”

There Had Been Changes At Home Also

Though Marion wasn’t happy to hear this information she was not surprised. She too had been noticing changes. Her once fun-loving husband who was always the life of the party was moody. He had bouts of anger and at other times sank into depression. Now hearing from someone else Marion realized she needed help.

A Visit With The Doctor

She reached out to their family doctor. But the day of the appointment Dave was his old self. It didn’t appear that there was anything really wrong with him. In fact, that is one of the reasons it took Marion so long to reach for help in the first place. Some days Dave was his old self. And Marion would question her concerns. So, when their doctor prescribed anti-depressants and diagnosed Dave with depression Marion agreed.

But a few months later his anger and aggression escalated. He also started gambling online. This is something he had never done. In fact, he didn’t even like to go to a casino to gamble. Dave’s attitude had always been “I work too hard for my money to throw it all away.” But here he was doing just that.

He was also experiencing physical symptoms. Muscle spasms and even difficulty walking sometimes. Marion wasn’t sure if the medication prescribed could have that effect so off they went to the doctor. This time her physician talked to her separate from Dave. She was able to tell him everything that had been going on. Her doctor suggested that she take Dave to a Neurologist for a full workup.

The Diagnosis- Early Onset Dementia

After numerous tests the diagnosis came in. Dave had Frontotemporal Dementia, referred to as FTD. The neurologist explained that dementia was not just about memory. Dementia was about behavior and cognitive ability.

The symptoms of FTD are caused by degeneration in the parts of the brain that control decision-making, behavior, emotion and language (typically the frontal, temporal and insular regions). FTD is the most common cause of dementia in people under 60. His behaviors were beginning to make sense.

Marion was lucky. Her husband was diagnosed fairly quickly. Many people are misdiagnosed. A Misdiagnosis may range from Alzheimer’s Disease to Parkinson’s or depression, even schizophrenia.

What Now?

Marion decided that she needed to inform his employer. Allowing him to continue at work until “something happened’ would not be a very responsible thing to do. She also talked to an elder law attorney. Getting her legal documents in order was important. The attorney recommended that she also discuss her options with a financial planner. She would need to plan for both her future and her husband’s future needs.

And luckily, Marion’s husband had purchased a long-term care insurance plan at work. This was a blessing and a huge life saver. It would mean that Marion could bring in help to care for Dave. And if needed it would also pay for a dementia care home for him.

Her attorney also put her in touch with the local Alzheimer’s Association. And she explained that they have information and resources available for all types of dementia, not just Alzheimer’s Disease. They could also help her to find a caregiver support group nearby. This would prove to be one of the most valuable resources they would offer.

I Thought I Was All Alone

Finding out that other people were going through similar challenges was comforting. Many of the people she met had resources to share that she might not have found elsewhere. More importantly, they listened. And they cared.

It wasn’t that her friends and family didn’t care but they just didn’t understand fully what Marion was experiencing. The families she met at the caregiver support groups really understood. While each person’s journey was different, they all experienced the same emotions.

They knew the feeling of isolation, fear, anger, sadness and deep grief that Marion was going through. This group understood when she judged herself somehow wondering if she could have stopped this horrible disease from stealing away the man she loved. And they empathized when her step daughter lashed out and accused her of not loving him enough when it was time to move.

Oh, she tried to keep Dave at home at first. But she had to work. Marion was able to use the Family and Medical Leave Act (FMLA) to take off from work. But her 12 weeks of leave were up and she did not have the luxury to stay at home. She brought in home care for a while. But Dave was starting to need monitoring around the clock.

Time to Look for Assisted Living

In Houston there is a Memory Care Facility on just about every corner. Marion reached out to her caregiver support group for help. Many of the families in the group choose a smaller facility. With 16 beds or less it felt more like home. They usually had a higher ratio of caregivers to residents also. And because the place was small care could be individualized.

Not Too Big and Not Too Small

This 16-bed memory care home model felt just right for Marion. There was plenty of room for Dave to walk. Since the backyard was secure, he could even go outside whenever he wanted. And it wasn’t too big. Dave could easily navigate around the well-designed home.