Personal Blog #25 … Tips from Michael Ellenbogen … a Person Living With Dementia and fellow member of the GEAR 2.0 Task Force ... 10/2/21

This Personal Blog (PB) is very different from previous PBs I have posted on this site.  I have already written PBs about GEAR 2.0, the NIH/NIA grant program seeking to improve hospital emergency room treatment for people with Alzheimer’s disease (AD) and other forms of dementia.  One of my fellow task force members is Michael Ellenbogen, a person living with dementia (PLWD).  When Michael was 49, he was diagnosed with early-stage AD … but that was only after Michael spent 10 years trying to receive a diagnosis for what was happening to him.  Doctors now believe he may have Frontotemporal Dementia (FTD) instead of young or early onset AD.  Regardless, Michael is now 63 and he continues to share his experiences to help improve life for those with all forms of dementia.  

I asked Michael to write about some of the things he thought were most important to share with both PLWDs and their caregivers so I could post these items in a Personal Blog.  I selected 4 items from Michael’s list to share in this column.  I will print Michael’s words in bold print, followed by my perspective as a former AD spouse caregiver.

1.  This disease is far worse than you can imagine. Just imagine that you are going in reverse from an adult to a child but you still have the knowledge of how things should be done but you are no longer capable of doing it.  For PLWD who are aware of what is happening to them, it is so very frustrating because they know that they are screwing up but can’t do much about it.   From my caregiver’s perspective, AD is even much worse than this description.  As this disease progresses from early to moderate to advanced stages and the PLWD continues “going in reverse,” the PLWD will also lose the knowledge of how things are done, not just the capability of how to do things.  Caregivers of those who are aware of their decline … not all PLWD are aware of how much they have declined … must also prepare for increasing frustration knowing there is nothing they can do to prevent this decline of their loved ones.  Both the PLWD and the caregiver must prepare to accept this reality.

2. Don’t argue about things that are not true or are remembered incorrectly, and sundowning makes it even more difficult.  Just trying to pay attention takes so much energy as the day progresses from morning to afternoon to night.  Just thinking about what to do takes up so much energy, I feel burnt out.  As my wife progressed from early to moderate stages of AD, I learned about something called “confabulation.”  Confabulation is a symptom of memory disorders often experienced by people suffering from dementia, traumatic brain injury, and a variety of other conditions. My wife would often “remember” events or activities that had never actually happened.  Even if presented with evidence to the contrary, she could not be convinced that her memory was faulty.  But she wasn’t lying to me when she confabulated … she genuinely believed that what she said was true.  Caregivers of PLWD should take Michael’s words to heart … don’t let yourself become involved in an argument you will not win, and be aware of the effects of sundowning.

3.  If you are going to have an angry face or tone, expect it 10 times worse from your PLWD.  I can vouch from personal experience that when I let my frustrations get the better of me, not only did I forget that my wife’s frustrations and feelings of anger were much greater than mine, but I also forgot how my reactions were affecting her.  Caregivers must not allow their frustrations or anger to show in their voice, facial expressions, or actions.  As with all situations when dealing with a PLWD, caregivers must always try to remember that their actions and reactions will have a great effect on their loved one’s actions and reactions.  So, in the words of one of my former teachers who posted only 2 words as her classroom rule each year: Be nice!

4.  This disease is like a curvy road and you need to be prepared for what is ahead to stay on track, and it will not be easy.  When I attended my first support group with fellow spouse caregivers, I was told that if you know one person with AD, then you know one person with AD.  All PLWD will eventually go through “stages” as this disease worsens.  However, some people advance rapidly through stages, some advance rapidly only through some stages, some advance slowly through all stages, and some advance slowly only through some stages.  Some go back and forth between stages because not all PLWD advance through stages in a completely linear fashion.  Some lose specific abilities forever as they advance to the next stage, while some regain those abilities for a limited period of time, only to then lose them forever.  And not every PLWD experiences the characteristics of a particular stage in the same way. 

As Michael said, “this disease is like a curvy road.”  Progression from early to moderate to severe stages of AD is a bumpy one, but you can learn about what lies ahead to avoid being surprised and to allow yourself to “stay on track.”  No one can predict exactly when or how quickly or slowly one will progress through stages of any form of dementia.  However, knowing what is coming … even if unable to know exactly when … will provide you time to plan for the future.