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.

Brithday Wishes.

Well, it’s that time of year again. I’m not talking about tax time, I’m talking about my birthday! I’m going to be 43 this year, and, as usual, it gets me to thinking about my life. I can’t have a birthday anymore without thinking about my dad, for a couple of reasons. The first one, of course, is the fact that he was present for so many, from my birth, to the tool box he gave me for my 12^th birthday, to the innertubing party at Snoqualmie for my 16^th – when he patiently transported six hysterical teenagers in the camper-truck.

The second reason is that this is the week that we moved him into the Adult Family Home where he currently lives, and where I sincerely hope he draws his last breath. It has been four years since it became evident that he could no longer stay in Assisted Living and needed to leave; four years since we found Greg and his wonderful house and moved Dad right in. It is also worth mentioning that the afternoon we moved him was my and my husband’s fourth date (you know you’ve found a good one when he helps you move your demented father into a new place. Thanks, honey!)

I still feel lucky every day that we found such a good place for Dad to live. Every February that rolls around, I remember that move. A few days after we moved him in, I took the remainder of my birthday cupcakes over to share with the house, and there Dad was, settled in on the couch, relaxed, like he had lived there for years. He liked the cupcake, too.

I am so grateful that I found this good, safe place for him where he can be comfortable. It was a birthday wish come true at the time, and his continued comfort is a wish fulfillment, too. I wonder sometimes how many more February’s there will be when I celebrate both the anniversary of my birth and finding a good home for my Dad. For his sake, I almost hope there won’t be many more. I’m to go see him this week, to spend time with him and remember what it is like (sort of) to have a parent around at a birthday. Maybe I’ll bring a cupcake for each of us!

Dirty Genes?

There is a question I hear a lot - second only to the question about whether Dad recognizes me or not.  People ask me whether I am afraid of ending up with Lewy Body dementia, like my Dad.  Since we still know so little about all the types of dementia and how and why they are caused, there are still questions about whether it is genetic or not.  I believe Alzheimer’s is thought to be genetic, and indeed, I talk to many families who have several generations of it in their midst.  I’m not sure what the consensus is on the other types of dementia, and whether they are genetically-inheritable or not.

From what I hear, the newest health hot topic is genetic testing, and finding out whether we have the genes for certain diseases in our makeup.  Angelina Jolie, of course, tested positive for one of the most dangerous breast cancer genes and took action, sparking many others to look into their own cells for time bombs.  Many others are finding out whether they have a predisposition to diseases like Parkinson’s, Huntington’s, and other cancers, and there is a huge debate raging about whether that is healthy, necessary, or even wise – to know what might be coming down your pike, so to speak.  Personally, I’m of two minds.

My mother, of course, died of a lung cancer at forty-seven that had its genesis in breast cancer five years earlier. In her last letter to me, she exhorted me not to be terrified of breast cancer but to definitely keep on top (abreast? Heh) of testing and mammograms and such.  It is possible I share her genes.  And now with Dad, I could possibly have dementia floating around in there as well.  Whether my parents actually had the genetic pathways to these diseases is unclear, however, because I think their emotional states and lifestyle choices might have had more to do with how they ended up physically.

My mother was disappointed and deeply angry about many things in her life, including her alcoholic father, and the difficulty of living with a depressed husband.  She didn’t express this anger and resentment healthily and pushed it deep down inside.  I believe her breast cancer had as much to do with rage and sorrow as it did her DNA.  After my mom died, my father gradually retreated into himself and his depression, retired from his job, and stopped interacting with the world even in the small amounts he had.  I think he broke the day my mom died - it just took ten years or so to start manifesting.  He gave up.

So, yes, it is possible I have nastiness floating around in my cellular makeup – I suspect we all do to a certain extent.  I certainly had something that contributed to my Rheumatoid Arthritis, although it is also true that there is no history of it in my family. I'm special that way! It is also highly probable that many of these diseases are being exacerbated by environmental problems – I think it’s likely we are poisoning ourselves. It is certainly true that our genes seem to let us down in certain ways.

So, I guess the only thing to do is continue to be as healthy as possible. I exercise, stretch, watch my weight, eat lots of veggies and not too much sugar, and I don't drink or smoke. I also know the wisdom of dealing with my emotions in a healthy way, working through my issues, using my brain to its fullest extent, meditating, and interacting with the world and my loved ones. Hopefully, one or all of these things will make a difference. I’ll make sure to get tested, and go to the doctor, but I’m going to bank on my strategy of being in the world in a healthy way and see where that gets me.