Tuesday, April 15, 2014

Square Peg.

One of the things that make Lewy Body dementia such a tough thing to diagnose is the capriciousness of its symptoms. Alzheimer’s can be a little more straightforward: the sufferer starts forgetting people they know very well, tasks they know how to do, and places they’ve been to for years. It then progresses on to other cognitive issues like decision-making, self-care, and executive abilities. It doesn’t tend to change day by day – people aren’t usually able to do something one day and not another. The progression is pretty predictable.

Patients with Lewy Body, on the other hand, can seem relatively normal on one day, and be completely non-functioning or unmanageable the next. It is one of the issues I hear about most from caregivers: “Yesterday Dad seemed fine, then today he doesn’t know who I am and he keeps talking to imaginary creatures. It’s like he doesn’t really have dementia sometimes. Is this normal?” Insofar as there is a “normal” in dementia, yes, this is normal.

It is one of the toughest realities of LBD. You can’t predict where in the brain it will settle or what functions it will affect or remove, and – even more strangely – sometimes some of those functions will come back! There’s no telling what is fully gone, or only obscured on a particular day, and what will come out from your loved one. They could remember your name and who you are one day, and not even recognize you the next. This, of course, only adds to the stress.

Dad was diagnosed with Alzheimer’s, but it never really fit him. Yes, when we took over he wasn’t feeding himself properly, wasn’t caring for his finances, and had some serious cognitive and executive-function issues. However, he remembered a lot, could figure things out, and was able to do a lot of things for himself. The fact that he was kind of high-functioning made things more difficult because at first I had to convince him to do what I needed him to do but also because he knew he wasn’t supposed to be with the barely-lucid people in the dementia ward, and it was hard for him.

Even though he hasn’t really talked much for the last three years, or spoken my name, or indicated in any way that he knows me – I’m sure that more is going on behind those eyes than he lets on. And I’ve thought that for a long time. When I found out that LBD sufferers don’t necessarily lose their memories or some cognitive functions, I knew that I was right – he was probably thinking more than I thought he was. I can only hope he isn’t aware of his situation anymore – I don’t think he is.

And that’s the problem with LBD. People who have it but who are diagnosed with Alzheimers are square pegs being fit into round holes. The problems won’t be the same, the solutions and medications won’t be as effective, and could actually be harmful, and people don’t know what to expect or how to respond. If your loved one seems like one of these square pegs, you might want to find out where they do fit: there are lots of other possibilities like Lewy Body dementia, Frontotemporal dementia, and Vascular dementia, to name a few.

Check out the new "Lewy Who?" campaign at the Lewy Body Dementia Association.

Tuesday, April 8, 2014

Great Stuff for Dementia Sufferers!

OMG. You have to look at the picture of this thing on Amazon. Such a great idea!

Alzheimer's-Dementia Activity Hand Muff Puppy

Price:$59.95 + $9.90 shipping
In stock.
Usually ships within 2 to 3 days.
Ships from and sold by GeriGuard Solutions.
The Alzheimer's-Dementia Activity Muff is a therapeutic hand product that provides comfort, warmth and activity to promote increased flexability and brain stimulation.
  • The muff helps to relieve boredom & anxiety about being alone. The wooden beads, ribbons and the soft squeezie ball (inside) are great for sensory stimulation. A comforting solution to those with "busy hands".
  • Made of cozy fabric, with soft smooth satin or faux suede pocket for personal essentials.
  • It also features movable marbles, strand of textured ribbons, loop of colorful wooden beads and a soft squeezable ball tethered within the center of the muff.
  • Machine washable.

Sunday, April 6, 2014

When Dealing With Non-Caregivers, Hold the Rancour.

Every week I spend some time looking at the many excellent blogs that I know of written by caregivers and those suffering from dementia. A lot of these bloggers are kind enough to list me on their blogs, or they stop by occasionally and leave comments, and I try to return the compliment. Inevitably, I will scroll down the list that most bloggers have of the blogs they follow or enjoy and I will click on those that look interesting, then click on links I find on those blogs, and so on. I also spend time on some Facebook groups I belong to and forums that I read. On all of these sites, I have noticed sometimes, a disturbing tendency towards attacking non-caregivers, or people who are uneducated about caregiving, or just others who say, admittedly, stupid things about caregiving.

I read a post the other day that was positively flaming with anger, describing a conversation that the writer had, or wished she had had, with someone who made a careless comment about dementia and those suffering from it. The writer was incensed that this person would not only make this comment but would perform the act that the comment described. The writer ranted about the stupidity and selfishness of the person and how she wanted to set her straight.

Other posts I have read elsewhere also lambast people who have made careless comments to the poster, or been thoughtless in their actions, or performed some other crime against caregiving. And believe me, I have been subject to some pretty stupid, and really hurtful, comments and actions myself. I have been abandoned by friends and family at challenging moments, and have had to listen to the ignorance of others who didn't understand what I was going through with Dad, and I have been angry. And I also understand that these blogs and groups and forums and posts are vehicles for caregivers to let off steam and deal with some very understandable and grievous stress and frustration. I can choose not to read them. I have also probably written some angry words myself.

However, I can't help but think that if we could just educate people about what we are going through, instead of yelling at them. If we could just help them understand what is happening to our loved ones - and, let's face it, may very well happen to their loved ones in the future - maybe we could help the next caregiver that person encounters, or maybe that person will do something caring or helpful at the next opportunity. In addition, we don't know what that person's experiences might have been, or why they are making the comment or performing the action. Perhaps the dementia sufferer they won't visit or are crude about was abusive to them. We just don't know people's personal stories.

A little more compassion, for everyone we encounter, might not be such a bad idea. Maybe if we held the rancor a little, as justifiable as it might be, we could change people, and the caregiving struggle, for the better, just a little bit.

Thursday, April 3, 2014

Holding On to What is Left.

There are many ways in which I feel I didn’t know my father. This is partly because his story started long before mine, and partly because he was so private and uncommunicative about his past and his thoughts and feelings that all I have are the bits and pieces he saw fit to tell me, or that I observed, or that I was told by others. This information may or may not be entirely accurate because it is impossible not to have altered this information, either through faulty recall or due to the effect of translating it through my own filters of belief and understanding. 

There are a few things about him I am familiar with or accustomed to – ways my heart still recognizes him as being my father, but there were so many elements about him that were a mystery to me, so many ways in which we were not close or connected, that I have been able to feel a peculiar detachment throughout much of his illness. Perhaps it made it easier that he wasn’t the most engaged father and that we weren’t terribly close because there wasn’t much that I missed about him, like I missed about my mom.
I read so many posts on Facebook and blogs and forums by people that mourn the loss of their loved ones to dementia, and wish for those people back in the ways they used to be. I have never wanted Dad ‘back’, or wished that he was the Dad he used to be. I have been saddened by all that he has lost and by the fact that he will never know my life the way it is now. But I think it’s more that I grieve the idea of how it would be to have a father now that I am an adult. Perhaps if your relationship with your loved one was similar, you’ll understand.
You can’t have back what you never had to begin with, but with a little grace, a little luck, and a lot of work, you can have something that is new and good.  I didn’t feel as if I needed to hold on to who he was which made it almost easy to adjust to who he became in his illness - the new person I would meet each day. I accepted each person that showed up. It was easier to adjust to what disappeared in him because there was so much I didn’t know about him. But I am doing my best to hold on for him to all the things he used to be and do and know.
For those people who are closer to their loved ones, who know them more intimately – everything they think and feel and have experienced – those people will have an even harder time as the disease progresses. They will have a much harder time adjusting to the loss of all they have known, valued, recognized, and depended on and they may have difficulties forging connections to who that person is now. Dad and I were able to make connections in our own way. We joked and teased each other, and had fun together doing simple things like walking and going to lunch. He also showed me a lot more affection as the disease progressed, and expressed his love and appreciation for me.
I may be an imperfect repository for Dad and what he was, but I am a necessary one - a memory holder and storehouse of as much as possible of Dad. The disease forced him to give up so much, and will eventually force him to give up everything. I believe that tiny elements of what makes my Dad who he is will remain within him until the very end, and I’ll do my best to hold on to who he was, as well. Long after he is gone, I will remember these facts and feelings so that he lives on in my memory. It is a gift to your loved one to listen to their stories, and to hold on to a little bit of their souls. My Dad and I have certainly had our issues, but it comforts me to run these memories through my mind and tell the stories to my husband, because in that way, a little bit of Dad remains in other people, as well. 

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 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/

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.