Author Archives: Lisa Cooke

About Lisa Cooke

Lisa is a retired science teacher and published fiction author.

Lewy Body Dementia 3 Stage System




A little over a decade ago, a group of caregivers for spouses with Lewy Body Dementia put together a list of symptoms and attempted to break the progression of LBD into 7 stages. (That list can be found here) For years, it has stood as the only available staging document for caregivers to use as the medical profession has not attempted to tackle such a task due to the complexity of the illness. While the caregivers’ list has been very helpful for giving families an idea of the types of symptoms to expect and when to expect them, it was often useless to those whose loved ones did not follow the progression of symptoms in the same order. Many caregivers complained that their loved ones would have symptoms from stage one and stage four at the same time, for example, or would bounce back and forth between stages.


In 2016, Very released an article simplifying the progression into three basic stages (That article can be found here) They compiled this based on input from several reputable sources which can be seen at the bottom of the article. For me, this system made much more sense and fitted my husband (and every other person I’ve known with LBD) much better.


According to this article there are basically three stages: (I expanded their explanation by adding examples of symptoms and including information from other sources, including interactions with hundreds of caregivers)

Early stage: Behavioral problems

At the beginning of the illness, behavioral issues are usually the most problematic. The individual will typically experience depression, hallucinations, delusions, REM sleep disorder, paranoia, and confusion. They may also become aggressive, angry, and undergo personality changes. While not all will experience all of these symptoms, most will experience at least some of them. (For example, my husband never became aggressive) It is during this phase the diagnosis is usually made. The individual may either have no movement issues at this time, or very minor ones like mild stiffness or tremor.


Middle Stage: Movement problems

During the Middle Stage of the illness, the behavioral issues tend to level off and movement issues arise.  This is not to say the behavioral issues stop, but they don’t seem to progress as rapidly as they did in the beginning and in some cases, actually improve. It is during this stage the muscular or Parkinson’s-like symptoms develop. The individual may lose control of bladder/bowels. They begin stumbling/falling, and may develop swallowing difficulties. The Lewy Lean might become evident. By the end of this stage, they will likely need help with most if not all of their ADLs (activities of daily living) and will often need placement in a care facility or the caregiver will need to hire home health care aides.


Late/final Stage: increasing weakness

At this point, the individual becomes weaker. They will likely need a wheelchair for most transports, will begin dropping water glasses etc. They reach the point where they can no longer feed themselves. The weakness continues until they eventually succumb to the disease. Often, they develop an infection, pneumonia, or some other illness that will end their life, however some simply shut down. (more on that can be found here) It is rare for this stage to last more than a year, however some have been known to be bedridden for two years or so. *Remember all of these progressions are gradual! They don’t simply wake up one day unable to feed themselves ever again. They might need help one day, but not the next, however eventually they need help each time.


Some things to consider:

  • It is impossible to diagnose Lewy Body Dementia without an autopsy. Those whose loved ones are not following this progression may possibly have a different type of dementia or more than one type of dementia. It has been estimated that 40-50% of those with dementia have more than one kind. (More on that can be found here)
  • The main difference between individuals with LBD isn’t the progression of symptoms, but the time each individual stays in each stage.  Some may be in Early Stage for 3 years or more while others might enter the Middle Stage after only a few months. My husband was in the Early Stage for about 2 years, Middle Stage for about 2 years and the Final Stage for a little under one year.
  • There is no clear cut step between stages. The symptoms morph slowly from one phase into the next. For instance, your loved one might start having swallowing issues, then suddenly improve for a few months before those issues return.  Lewy is tricky that way.
  • The average life expectancy for Lewy Body Dementia is 5-7 years AFTER diagnosis. Many caregivers can recall symptoms for years before diagnosis, but the statistics for survival do not take that into account. Please remember this is an average. Some will not live as long and others will live longer. (A study on that from a caregiver support group can be found here)
  • If a person was diagnosed with Parkinson’s disease several years before Lewy Body Dementia was added (meaning they would have had movement issues first) it’s important to note that most neurologists would diagnose them with Parkinson’s Disease Dementia instead of Lewy Body Dementia. The general rule of thumb is that PDD is diagnosed if the individual has had Parkinson’s for more than 2 years before the dementia symptoms arose, however, the two dementias are extremely similar and treated the same. (more can be found on that here)

Final thought:

I personally found this method easier to understand than the more complicated systems that list dozens of symptoms neatly categorized into several stages. Individuals are too different for that sort of method to work consistently. I’ve also noticed when working with different neurologists, they tend to use the terms early, middle, and late when referring to their patients instead of a complex order of stages. Not once during the time my husband was seeking treatment from either the Cleveland Clinic or our local neurologist did any of the doctors involved say he was in stage two or stage four, etc. They simply said, early/beginning, middle or late. (Some doctors will used the FAST scale, but that is usually for Alzheimer’s)

I think it’s important for caregivers to look at all documents pertaining to possible symptoms and time frames so they have enough information to make important decisions regarding care and finances. However, attempting to pigeonhole your loved one into a rigid staging system might prove to be more frustrating than productive.



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Surviving the Grief


This article is mostly for those who’ve lost a loved one and are having difficulty moving forward. At the time of this post, it’s been 3 months since my husband died from Lewy Body Dementia and overall, I’m doing very well. I’ve been asked many times how I’m holding up as well as I am and as usual, those sorts of questions make me stop and think. I’m not totally sure why I smile more than cry, but I thought I’d share my survival plan with those struggling with the loss of a loved one. And, yes, I developed a plan after he passed away.

My mental health is too important to leave something this difficult to chance.

First, I’m a very goal oriented person. It’s natural for me to set goals and work toward them in all aspects of my life. Having goals keeps me focused on the future instead of the past. I often think of the saying, “Quit looking in the review mirror. You’re not going that way.”

So how did I apply that philosophy to my grief?
My husband died on November 13, 2016. Just a few weeks before Thanksgiving. It’s never easy losing someone you love, but having it hit just before the holidays can be brutal. Add to that the beginning of winter (seasonal depression, anyone?) and there’s the potential for a total collapse. Knowing that, I set a major goal for myself with smaller goals to help me achieve that Big One. My large goal was pretty simple…


I was determined to survive the loss of my life partner. I have children, grandchildren and an 82 year-old mother who love and need me. Giving up is not an option. Surviving this would require focusing on two different aspects of my life: my physical health and my emotional health.

The first thing I did was allow myself time to rest and heal. The last two months of his life were exhausting both mentally and physically for our entire family. I gave myself until the first of the New Year (about 6 weeks) to rest.  I had to take care of the legal issues that arise when your spouse dies, but I gave myself a pass for all other things. There would be no cleaning out closets or cabinets. My body needed a break. In order to help with the stress, I began walking in the mornings, but I didn’t push it. I walked 3-4 times a week and usually only a mile. The bulk of the time, I rested, watched TV, read, and planned a future for the new me.

To cope with the holidays, I altered the way I usually celebrated. I spent Thanksgiving out of town with my daughter and her family in their new home. On Christmas Eve, my mother spent the night in my apartment. The next morning, we passed gifts and I fixed Christmas dinner for just the two of us. We finished the day watching movies together. These were all different for me as far as celebrating the holidays. As a result, they kept me from focusing on the fact my husband wasn’t there. Altering the way we celebrated helped quite a bit.

During my 6 weeks of rest, I made a list of things I enjoyed or was interested in trying. I asked myself, “If I had no one to worry about but me, what would I do with my time?” Because for the first time in my life, I wasn’t taking care of children, or a husband. I really did have the time to pursue my interests. This was new for me and took a while for me to truly grasp that concept.

My Joy List included:
Traveling, hiking, fishing, writing, reading, star gazing, playing guitar again, learning the violin, learning to draw, and photography. This list would be the focus of my emotional survival. Your list will most likely be entirely different. It might include things like getting a pet, putting in a new garden, or rebuilding a classic car. What’s on the list isn’t important as long as they are things that bring you happiness.

When January came around, I kicked my new goals into gear.

Physically, I wanted to increase my fitness walking to between 3 and 4 miles per morning by March. Being winter, this required walking inside our facility (I live in a retirement community), but I wanted to be able to hike by summer and this 60 year-old body needed some fine tuning. That also meant eating healthier. It’s easy to let those things slide when you’re in a caregiving situation. It was time to take care of me for a change.

As for my emotional well-being, that’s where my Joy List came in. Many of the items on that list revolved around traveling and camping. I had traveled my entire life, but we had to sell our RV when my husband became ill. I missed traveling a great deal, and during the last couple of years of his life, I decided if I survived his illness, I was going to camp again. So, I bought a used RV after he passed away (more can be seen on that here) and then joined a travel group for single women who like to camp but don’t want to go alone. It’s called Sisters on the Fly, and there are over 6,000 members! Each state has a chapter and there are events planned throughout the year, sorted by region. Early in January, I reserved spots for three different camping events. There are several events scheduled each weekend across the country and one of the toughest things I encountered was narrowing my choices down to a reasonable number. I wanted to attend all of them! The first one I chose was in Gettysburg in May and I’m extremely excited to join in the fun.

The key to that sentence is: “I’m extremely excited.

That doesn’t mean I’m not grieving for my husband. I still have nights when I feel as though my heart has been ripped from my chest. I still break down into tears periodically, but when those moments happen, I force myself to think about my plans and the future. I’ll confess, sometimes it’s tougher than others. But the main point is that I have made my well-being a priority now. For eight years, my number one goal was to keep my husband as content and comfortable as I possibly could. It’s my turn now and I intend to tackle my new goals with as much vigor as I did my husband’s care.

So what are some tips I can share for how I’m surviving the loss of my husband after almost 40 years of marriage and 8 years of caregiving?

Get physical. Walk, swim, bike…do whatever you can to move, not only for your physical well-being, but to reduce stress. Exercise releases endorphins and endorphins make you feel better (and they’re free.) It’s also important to get doctor’s checkups you might have missed while tending to your caregiving duties.
Make a list of things you enjoy then do them. Now is your chance to focus on what YOU want and not on what everyone else wants from you. Whether that means travel or simply getting a pet to keep you company, it’s time to spoil yourself. At least once a day, look in the mirror and say, “My life is important too.”
Get out and interact with people. Sitting home will only make the depression worse. Join a group of some sort-church, volunteer somewhere, go to the Y, support group,…even if it’s an internet group, just INTERACT with other people.
Allow yourself to grieve, but don’t dwell in that dark place. Grief will begin feeding on itself if you’re not careful. Make yourself laugh at least once a day. I have a Pinterest board with things that make me laugh. (Youtube videos of babies laughing will do it every time) It’s hard to be sad when you’re laughing.
Accept that being happy does not mean that you didn’t love your spouse. It means you’re not going to allow their death to erase all the joy you’d shared with them through the years. Keep the joy in your life, look for it, embrace it, and actively seek it. There is no better way to honor their memory than to smile when you think of them.

Hugs to you all. There is life after caregiving, but you have to reach out for it. It will not come knocking on your door.

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The End Of The Journey



After almost 5 years of battling Lewy Body Dementia, my husband passed away in November of 2016. He was only 63 and had been extremely fit and active before his illness. Throughout our Lewy Journey, I often felt he was nearing the end as he seemed to decline rapidly at times, and I couldn’t imagine him living for much longer. From the time I began having those thoughts until he actually passed was between 2-3 years.

Now that we’ve finished our journey and I’ve interacted with countless other caregivers, I can see a basic decline pattern that most seem to follow unless they die suddenly from pneumonia, heart failure, sepsis or some other illness. I’m sharing what I learned with hopes that it’ll give you a heads up with the types of things that will likely happen in the final months of your loved one’s journey.

Read the rest of this entry

A Different Kind Of Grief



I’m no stranger to grief. In my 59 years, I’ve buried all of my grandparents, both of my sisters, both of my in-laws, my father, and now my husband. The loss of the sister closest to me in age was particularly hard as she was my best friend and breast cancer took her way too soon. I watched her die over the course of two years and losing her changed my life. For years after her death, I marked every event in time as to whether it happened before or after she died. Her death shifted my world.

Losing my father was difficult too, but he was 79 years-old and for some reason, that made it more bearable. Read the rest of this entry

The Stages of Caregiving



There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.

Stage One: Confusion

The caregiver knows something is wrong, but doesn’t have a diagnosis yet. Read the rest of this entry

“My thoughts are not my actions.”


Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”

Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story. Read the rest of this entry

Game Changers


Game Changers

One of the more frustrating aspects of dealing with Lewy Body Dementia is the wild changes in ability often experienced by those who have the disease. Their abilities to function can go up and down more frequently than Oprah Winfrey’s weight, throwing the caregiver into a constant state of confusion as to how they should prepare for what’s coming next. While I would never presume to predict the future for anyone dealing with this disease (or any other disease, for that matter) there are certain changes along the way that most will eventually deal with, unless their LO (loved one) dies suddenly. I refer to these milestones as “Game-changers.” Game-changers are tipping points in our LOs functioning that require us to alter our lifestyle in some manner. These are not day-to-day changes in function, but specific milestones that alter life dramatically.
These milestones will be different according to your individual situation, but seeing the changes experienced by others can provide food for thought for those starting this journey.
In the hopes of helping other caregivers understand the pivotal points that lie ahead for most, I’ve put together the following list of life altering changes we’ve faced in the last 8 years. (Feel free to share)

Game-changer #1– the diagnosis 2009/2011 Read the rest of this entry