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.

Article on Frontotemporal Dementia.

This is a great article on NBCnews.com about a serious type of dementia that not enough people know about. Here is the link, as well.   http://www.nbcnews.com/health/health-news/dementia-rivals-alzheimers-strikes-age-65-f6C10317123

 

 

"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: http://www.theaftd.org/

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.

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.

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.

 

Oddly Lewy Body.

Lewy Body Dementia can be a confusing and unpredictable illness by any measure. Sometimes, when I tell people that Dad has LBD, which is Parkinson’s-related, they are surprised. They ask me if Dad has had Parkinson’s for a long time, and what type of treatment he had. They are even more surprised when I tell them that Dad didn’t have Parkinson’s before the dementia, but that he has it now.

Dad’s dementia always presented in such odd ways; it was hard to predict what he would do or how it would progress, and hard to judge exactly what he needed since he could be quite lucid in some ways. We had to put him into a dementia wing early because he was running away from caregivers – but it was heartbreaking how aware he was of how different he was from most of the muttering, slumping residents in there.

I know now that most doctors diagnose Alzheimer’s at any hint of cognitive problems, probably because it is the most well-known and covers most of the symptoms anyway. Unfortunately, the MMSE (Mini Mental State Exam), given to sufferers only shows cognitive issues, not what is causing them. It became evident that Dad had something more like LBD when he became aggressive. Now, he is experiencing the physical symptoms that accompany his type of Lewy body - DLB.

“Every person with LBD is different and will manifest different degrees of the following symptoms. Some will show no signs of certain features, especially in the early stages of the disease. Symptoms may fluctuate as often as moment-to-moment, hour-to-hour or day-to-day. NOTE: Some patients meet the criteria for LBD yet score in the normal range of some cognitive assessment tools. The Mini-Mental State Examination (MMSE), for example, cannot be relied upon to distinguish LBD from other common syndromes.

LBD is an umbrella term for two related clinical diagnoses, dementia with Lewy bodies and Parkinson's disease dementia. The latest clinical diagnostic criteria for dementia with Lewy bodies (DLB) categorizes symptoms into three types, listed below.  A diagnosis of Parkinsons' disease dementia (PDD) requires a well established diagnosis of Parkinson's disease that later progresses into dementia, along with very similar features to DLB.  A rather arbirary time cutoff was established to differentiate between DLB and PDD.  People whose dementia occurs before or within 1 year of Parkinson's symptoms are diagnosed with DLB.  People who have an existing diagnosis of Parkinson's for more than a year and later develop dementia are diagnosed with PDD.” www.lbda.org

It is hard to see the slight tremor that rocks Dad’s body now, as well as the minor muscle contracture in his arms. It is difficult to see him twitch violently every few minutes, especially when he is sleeping. The hardest of all is to watch my once long-legged, striding father, shuffle carefully along – brain unable to decipher whatever messages still come from his feet. I hope that these are the worst of the Parkinson’s symptoms we see and he doesn’t experience worse ones like dystonia and bradykinesia.

The main message I try to convey to caregivers is that LBD can show up in a lot of different ways, not just one. It is important to watch out for signs that your loved one is suffering something more than just Alzheimer’s. As I watch Dad sleeping, body vibrating gently, I wish for him no worse than this in terms of bodily discomfort. Hopefully, my wish will come true

  

I'm Sorry, This Is Hard.

I attended Teepa Snow’s workshop on Tuesday and it was just amazing. She’s a tiny, little woman with boundless energy whose North Carolina accent slips out periodically, especially when she is modeling a patient with dementia in her efforts to teach caregivers. She has made a career out of helping family and professional caregivers understand what, exactly, is going on with their care receivers, and why, and how best to help them minute by minute. Her techniques are so simple, using so much plain common sense and an understanding of what is happening to the brain, eyes, and body of the care receiver, it is heartbreaking to think that they are not taught everywhere, to everyone.

It seemed to me that her points could really be boiled down to two things. The first is something I see so often with my support group attendees and the caregivers I counsel, and it is one of the hardest things of all. It is the necessary realization that this is no longer your loved one. The disease has changed them, and you must change as well. I struggle to get wives to understand that they are no longer dealing with their husbands, adult children to realize that this is not their mom anymore – and you can’t expect them to know and do what they used to know and do. You can’t get irritated or angry at what they are doing, or not doing.

So many caregivers get angry that, “My mom says she is ready to go but she isn’t even dressed. It’s so annoying!” or, “My husband said he took his medication but I can see he didn’t. He just does it to irritate me!” I tell them over and over, you have to realize they aren’t who they were, they don’t have the abilities they had, they aren’t just doing this to piss you off! You have to let go of the person you knew, and all the ways they were, and everything you had, except for shared love. My father would often trigger me with behaviors and repetition, but I had to keep reminding myself that it was the disease, not him.

The other thing was, the ability to apologize, to diffuse a situation, to take blame upon ourselves – something none of us are very good at doing. Teepa makes the argument that any time a situation goes wrong and emotions and negative behaviors are triggered, it is we the caregivers who must take responsibility, as difficult as that might be, because it is we who are of sound mind. We must take a moment, calm down, face our care receiver and say we are sorry, say we didn’t mean for it to happen, say, ‘I’m sorry, this is hard.’ Doing this will make our care receiver feel they have been heard and understood, and that they are not just the results of their disease.

It seemed to me that that phrase, alone, sums up caregiving and dementia and illness and pain and everything involved in our lives now. I’m sorry, this is hard. This is hard for caregivers, and hard for care receivers and hard for families, and just darn hard all around. I am fortunate in that many of the issues and techniques she was describing were for people earlier in the disease than dad, although, admittedly, I probably could have used her ten years ago. But they are still good messages to hear. This is no longer the loved one you know, but it is someone you love, and I’m sorry, this is hard.