Friday, March 28, 2014

Jury Duty.

I have just served on a jury last week – a most surreal experience. It was the first time I was ever called, and everyone assured me that I would sit there for two days, reading, while others were picked for juries and that I would then get to go home, never having been picked. Well, it didn’t quite work out that way. I’m not sorry I get picked, as it was definitely an interesting event unlike anything I’d done before. As I sat there in the jury box, my thoughts turned, as they so often do, to my dad.

Many years ago, when I was living with my first husband and Dad was still normal and lucid, he told me about his experiences being picked for a jury. (It is sometimes almost impossible for me to remember those times, between the period when my mom died and I graduated college and moved out of the house, and when Dad began to seriously lose his mind. There was a time there, maybe ten years, when life continued on as normal, and Dad went to work, and wore suits, and had his life, and the concept of dementia never entered my mind. It has attained almost mythic status – impossible to believe – since the current situation has been going on so long.)

Anyway, he was picked for a criminal trial that lasted several weeks, involving a stabbing and various other serious events, and he told me how fascinating it had been to hear the evidence, and see the witnesses, and watch the lawyers do their elaborate dance. He described working with his fellow jurors to figure out the evidence and the charges and it was obviously an experience he had enjoyed. If I’m not mistaken, he got called again and was picked for another, shorter, trial. He appeared to be making a second career out of being a juror. He seemed to really enjoy the process.

Several years later, when I was living with and caring for him, he got another jury summons in the mail. I guess having served a few times, he was put on the county’s short list. As I looked at the summons, and tried to figure out how to get him excused because if there ever was a hardship that keeps you from jury duty, dementia would be it - all I could think about was how much pleasure he had taken in serving his community and being part of something bigger than himself, and, most importantly, being a contributing member of society. He would never truly be a ‘contributing’ member of society again. As I dialed the number to talk to a court clerk, I was filled with regret for my intelligent, stricken father.

So that is why, as I listened to testimony, and watched the attorneys, who, let’s face it, looked like they were about twenty-two, then filed back into the jury room with my fellow jurors and attempted to decide on a verdict – I thought about dad, and tried to contribute on his behalf.

Monday, March 24, 2014

Article on Frontotemporal Dementia.

This is a great article on about a serious type of dementia that not enough people know about. Here is the link, as well.
"Just two years ago, Barbara Whitmarsh was a woman who seemed to have it all. She was a highly regarded scientist at the National Institutes of Health. Married for 30 years, she’d raised six children with her beloved husband, John.
But then John Whitmarsh started to notice some disturbing changes in his wife, now 62. It was as if the woman he’d married and lived with all that time was slowly and inexorably fading away.
“Her ability to feel empathy, her personality, it just disappeared over a period of time,” John said. “I would ask her, ‘Is there anything wrong?’ and she would say, ‘No, I love you and everything's fine,’ but she wasn't there. And she said it in that flat way.”
A scientist himself, Whitmarsh knew there was, indeed, something wrong. And he was worried. He asked his wife to see a psychiatrist who eventually diagnosed her with frontotemporal dementia or FTD.
It’s a dementia that generally strikes at an earlier age than Alzheimer’s disease. And its symptoms are different – at least in the beginning – from Alzheimer’s because it originates in a different part of the brain.
It’s also a disease that until very recently doctors thought was rare -- but that view is changing.
“We've begun to realize that frontotemporal dementia is actually more common than Alzheimer's disease in people with degenerative disorders under the age of 60,” said Dr. Bruce Miller, director of the Memory and Aging Center at the University of California, San Francisco.
The Alzheimer’s Association estimates that in people younger than age 65, FTD may account for up to 20 percent to 50 percent of dementia cases.
While Alzheimer’s can eventually lead to behavior problems, it starts with a deterioration of memory as neurons in the hippocampus are destroyed. FTD starts with behavior problems caused by the death of nerve cells in the frontal lobes, then spreads to other areas of the brain, leading to fading memory. As the diseases progress, they become more and more difficult to tell apart.
A key symptom of FTD is a loss of inhibition since the frontal lobes are responsible for judgment, decision making and self-control. Before her illness Whitmarsh watched her weight closely. In just a year she has gained 30 pounds.
Because those early symptoms can be mistaken for psychiatric illnesses, people with FTD are often misdiagnosed, Miller said.
For that to change there will need to be “a paradigm shift in our society,” he added.
“I think traditionally people have thought about behavioral symptoms such as loss of empathy for other people, addiction later in life, disinhibition, as not having a neurological origin. I think that when people begin to realize that when someone in their 50s or 60s suddenly loses empathy for others, becomes disinhibited, becomes profoundly apathetic, begins to overeat, frontotemporal dementia needs to be suspected.”
“It’s a tragic problem because often the first manifestations of the disease are bad judgments and disruption of the family infrastructure happens,” Miller said.
For Barbara Whitmarsh, the brain damage due to FTD has meant living in a locked nursing home, where she moves compulsively and constantly.
As the disease has progressed it also has robbed her of her memory. She seldom recognizes her husband or their children and she rarely speaks.
As with Alzheimer’s disease and other dementias, there is currently no treatment for FTD."
For more information on FTD, please visit The Association for Frontotemporal Degeneration:

Wednesday, March 19, 2014

Info on Namenda from Alzheimer's Reading Room.

Beginning in August, Forest Laboratories plans to discontinue Namenda tablets, and instead will be offering a new formulation NAMENDA XR®.

So the news that follows in the press release below should be read carefully and shared in support groups worldwide.

I would suggest that Alzheimer's caregivers bring this information to their physician or neurologist now, and start discussing the implications of this change if you have not already done this.

I am not a doctor but I have written many times that I beleive my mother did benefit from being on the combination therapy (Arciept and Namenda). See the related content below.

Forest Laboratories to Discontinue NAMENDA® Tablets, Focus on Once-Daily NAMENDA XR®
Decision Supported by Positive Reception of NAMENDA XR by Physicians, Patients, and Caregivers

Forest Laboratories, Inc. (NYSE:FRX), a leading, fully integrated, specialty pharmaceutical company largely focused on the United States market, today announced that it plans to discontinue the sale of NAMENDA® (memantine HCl) 5 mg and 10 mg tablets effective August 15, 2014.

Forest has notified the U.S. Food and Drug Administration of this decision.

The oral solution of NAMENDA and once-daily NAMENDA XR® (memantine HCl) extended-release capsules will continue to be available.

Both NAMENDA and NAMENDA XR are indicated for the treatment of moderate to severe Alzheimer’s disease.
“NAMENDA XR offers important benefits, including convenient, once-daily dosing, which is particularly meaningful for this patient population and their caregivers. Our decision to focus on NAMENDA XR is supported by these benefits as well as the positive feedback we’ve received from physicians and caregivers since the launch of NAMENDA XR,” said Marco Taglietti, MD, Chief Medical officer and EVP, Drug Development and Research of Forest. “The conversion also allows us to streamline our resources and explore innovative new compounds that may be effective for the treatment of Alzheimer’s disease, including the fixed-dose combination of NAMENDA XR and donepezil, which is under development.”
Importantly, physicians can switch patients from NAMENDA to NAMENDA XR the very next day without titration, as outlined in the FDA-approved package insert. In addition to its convenient dosing, NAMENDA XR capsules can be opened and the contents sprinkled on applesauce for patients who have difficulty swallowing pills.
“Given the day-to-day challenges of caring for someone with Alzheimer’s disease, there is a need for treatments that simplify a patient’s daily regimen and may help caregivers manage their loved ones’ needs,” said Gustavo Alva, MD, Neuropsychiatrist and Medical Director at ATP Clinical Research in Costa Mesa, CA. “For many families, NAMENDA XR is already fulfilling this need as a once-a-day treatment alternative.”
Forest sponsored a third-party survey that included 250 physicians treating Alzheimer’s patients and 250 caregivers of Alzheimer’s patients.

Physicians surveyed responded that NAMENDA XR once daily administration was important in their decision to prescribe the medication. Also, a majority of caregivers responded that they were satisfied with the once daily dosing of NAMENDA XR.

Dr. Taglietti further noted: “Forest has provided effective treatments and education to the Alzheimer’s community for the past decade, and we remain fully committed to delivering products that can improve the lives of patients and their loved ones.”

Forest is actively communicating with healthcare providers, pharmacists, patients, and caregivers to notify them of the discontinuation of NAMENDA and the continued availability of NAMENDA XR.

Patients and caregivers with questions can call Forest’s dedicated toll-free number, 1-844-TREAT-AD.

Thursday, March 13, 2014

Dementia Mysteries.

A few years ago, we went to visit my father the day after Thanksgiving. When we walked into the living room of his AFH, he was sitting at the end of the sofa with a blanket over his legs, looking alert. I sat down beside him and said hello while rubbing his arm, and my husband leaned over him and put out his hand for Dad to shake it. Dad looked at him, took his hand, and then didn’t let go after the initial shake.

He kept holding on to my husband’s hand, not painfully, but definitely firmly. My husband stood there for several minutes, talking to my dad, allowing his hand to be held until finally Dad’s grip loosened a little and he was able to pull away and sit down. At the time, I thought it was a reoccurrence of something Dad used to do a lot with his aide and friend, Del. They used to have a strength contest of sorts, with Dad squeezing Del’s hand while Del laughed and squeezed back. After having attended Teepa Snow’s workshop, I now realize that something else may have been going on.

Our hands essentially have two main functions or abilities: fine motor skills, with the thumb and first finger like grasping items and manipulating pens; and strength, with the last three fingers and heel of the hand allowing us to apply pressure and open jars. People with dementia lose the fine motor skills portions of their hands relatively quickly, yet they retain the strength portions. What is more, it feels good to them to use that strength portion; they tend to grip tightly what they can – hands, arms, chairs – and not want to let go because it is soothing. I was amazed to hear this, and thought immediately back to that day with Dad.

I learned so much about the physical effects of dementia, just in that six hour workshop. Another thing I didn’t know about dementia is that it affects the sufferer’s sight, not in terms of clarity of vision, although age has probably already affected that, but in terms of range of vision. Someone with dementia goes from having normal peripheral vision, to a narrowed field of vision the equivalent of wearing a diving mask. It then narrows even further to the equivalent of goggles, so that they can no longer see anyone approaching them from the side.

They can only see what is directly in front of them; if they are looking down, they can see their plate, for example, and if they are looking up, what is in front of them seizes to exist. This is one of the reasons why talking to someone with dementia while they eat is not a good idea; they will look up to see you and forget about their plate altogether. Or trip over something on the floor while paying attention to the person in front of them. This is also why dementia sufferers become frightened or aggressive when a caregiver approaches from the side to change them or feed them – they just can’t see it.

These are only a few of the many, many changes caused by dementia, changes we as caregivers need to know as much about as possible. Just think how many incidents of aggression, episodes of intense emotion, and occurrences of ‘bad’ behavior could be avoided if we all understood exactly why our loved one was reacting the way they are. Dementia is a mystery, following it’s clues and understanding it’s hints is our main job as caregivers.

Saturday, March 8, 2014

Things We Might Have Said, Things We Might Have Done.

My husband and I are sitting on a plane on the way back from a much-needed respite vacation. The plane is a Boeing model, which, as usual, makes me think of Dad, and we took up a familiar conversation – how our married life might have been different if Dad had not had dementia. I’m sure I’ve written about this before – but the regret, and the subject, never truly goes away. What is the word for the sorrow of a missed opportunity?

We like to talk about whether my father and my husband would have gotten along. We discuss the activities my husband would have suggested he and my father do, like go to car shows or model railroad expositions, and talk about Corvairs and Corvettes. This time, my husband put forward that he would have enjoyed buying a classic car that needed renovating and asking my father to spend weekends with him helping him do it. I tell him my father could have taught him everything there is to know about cars and engines and that he really would have enjoyed that kind of project.

My husband has never known the man I knew; with the sly sense of humor, the innate mechanical genius, the measured manner, and also the self-denial, the inflexibility, the depression. I regret that he never will know that man. He knows him only through the stories I tell – the good and the bad, the positive and negative events of my life, the ways my father lifted me up and the many ways he let me down.  My father will never know the funny, talented, hugely-hearted man I know my husband to be, which also makes me so very sad.

I really can’t know whether my father would have liked my husband, but I’m pretty sure he would have. I think my first husband was intimidated by my father, and nervous around him. He was not at all mechanically-inclined and they really didn’t have much to talk about. I remember him mostly being nervous around my dad. My current, and hopefully last, husband would never have been intimidated, although he would have been respectful, and I think he could have been very good at bringing my dad out of his reclusive shell. I wasn’t able to spend much time with my dad when I was first married because I was dealing with my anger and grief about some of his actions. It took his dementia to, oddly, bring us back together.

 Maybe we would have become something of a family – my husband, my father, and I - I like to think that it would have been possible. I’m pretty sure my husband would have made a special effort to get us all together. I confess I’m very curious what my mother-in-law and my father would have made of each other! There is also the possibility that my husband and I may never have met, had my life not gone exactly as it has. I guess we are never really given to know these kinds of things.

There is only what is – sitting next to my dad in his recliner, telling him about our life events and our classic car and what we have been up to that day while he watches us gravely. I have no idea how much he comprehends, but I hope he is soothed, and, perhaps, somewhat entertained by my husband’s turn of phrase and expressive face. There is only now, and what is happening now, and everything else is just things we might have said, things we might have done.