PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Monday, June 1, 2015

Between A Rock and a Hardplace

Lately I have been doing a lot of thinking and a lot of wondering about Gregory. Who is he at this stage of his illness? What is going on in his brain? What does he understand, seem to understand, not understand?

What is he thinking, feeling, experiencing? When he is mumbling away does he think he is really talking in words I might understand? Do the words mean anything to him? Who is Gregory? Who should I be in relation to him?

We are not talking about the spirit or the soul which is Gregory which is still available to him and to me.  I do not mean the "life" in him, of which I believe I get periodic glimpses. For example, once in a while I see it when he spontaneously tells me he loves me or out of no where says, "I want a kiss!" while puckering his lips. Evidence enough that he is still there!

• • •

Often I think he is responding with appropriate facial and vocal noise expressions when I am with him, asking or telling him about things. But it remains, who is Gregory?

I find myself grieving for him not living with me at home. I grieve him being at a memory care facility (they do the best they can which is actually pretty good when compared to most around.) When I am not there does he miss me?

I am distraught at times that he must pee and poop himself because he is no longer ambulatory. I am distraught at times that he cannot feed himself or let his needs be known.

I am sad when I am enjoying doing things we used to do together and he can no longer do like going to the Botanic Garden, going out to dinner, enjoying a vacation, sitting on our balcony, petting the cats, going grocery shopping.

Is he lonely? Sad? Frightened? Confused? Frustrated? Angry? In pain? Feeling in danger?

Is he happy? Joyful? Amused? Entertained? Aware? Content? Feeling safe?

A cry to sleep at night once in a while is not bad, but I need to keep myself in good spirits so that when I am with him, I can be up and cheerful and happy and supportive. I do not want to feel any more depressed than I need to or spend more time trying to answer these questions if, in effect, the answers do not matter.   
• • •

So my recent visit with Dr. B, the Lieberman "go to" Neurologist, was very interesting. The doctor had spent time with Gregory early on at the request of the fifth floor social worker because Gregory was the first "young onset Alzheimer's" resident on the special memory care unit and she wanted to know more about that aspect of dementia. 

He visited Gregory again recently based on my request for him to look into the kinds of questions I have as discussed above. He met with Gregory, talked to the people at Lieberman who work with Gregory, and then spent an hour with me. Some of his ideas made a lot of sense to me, some made me sad. I disagreed with some of his suggestions.
• • •

According to Dr. B, language is the most important measure of how advanced a person's dementia might be. Language is how we monitor our way through life, share it with others, let our needs be known, inquire about our environment, process most everything we encounter, learn about new things which we do our entire life, etc, etc, etc. 

Language not only takes place between people but there is also an internal language, thinking about things whether using words you can hear (as in talking to yourself) or words only in the mind.

Because Gregory's language is almost nonexistent at this point, according to Dr. B we can probably say that Gregory's dementia is probably very advanced. While it may seem like Gregory can acknowledge language, and while at times he is able to use it appropriately (although word at a time,) much of Gregory's language ability is based on instinct, gesture, tone of voice, reading a person's facial expressions.

• • •

Several times Dr. B referred to Gregory at "That poor guy..." While that made me sad it did emphasis some of what Gregory is probably still "suffering" because of his level of awareness combined with the level of his dementia. For example, "That poor guy cannot process what he is experiencing because of his lack of language. So if it is other than a very basic, over learned, instinctual experience, the experience probably does not make much sense to him."

Another example Dr. B gave is that Gregory seems to demonstrate a certain level of anxiety, fear, and discomfort if only because he is not able to analyze an experience using language. "That poor guy does not know whether he can trust an experience or if he needs to fear it." You have heard of the very basic "Fight or Flight" instinct.

• • •

The following was taken in part from the McGill University free research service.  

"The most efficient model for understanding the brain in terms of its evolutionary history is the famous triune brain theory developed by Paul MacLean. According to this theory, the following three distinct brains emerged successively in the course of evolution and now co-inhabit the human skull. 

"The reptilian brain, the oldest of the three, controls the body's vital functions such as heart rate, breathing, body temperature and balance. Our reptilian brain includes the main structures found in a reptile's brain: the brainstem and the cerebellum. The reptilian brain is reliable but tends to be somewhat rigid and compulsive. 

This part of Gregory's brain seems to be working well.

"The limbic brain emerged in the first mammals. It can record memories of behaviours that produced agreeable and disagreeable experiences, so it is responsible for what are called emotions in human beings. The main structures of the limbic brain are the hippocampus, the amygdala, and the hypothalamus. The limbic brain is the seat of the value judgments that we make, often unconsciously, that exert such a strong influence on our behaviour.

This part of Gregory's brain is working in part but the value judgments and behavior parts are diminished.

The neocortex first assumed importance in primates and culminated in the human brain with its two large cerebral hemispheres that play such a dominant role. These hemispheres have been responsible for the development of human language, abstract thought, imagination, and consciousness. The neocortex is flexible and has almost infinite learning abilities. 

This part of Gregory's brain is the one that is the most diminished if it is available to him at all.

"These three parts of the brain do not operate independently of one another. They have established numerous interconnections through which they influence one another. 

It is a
s if one of the things Alzheimer's does is scramble these connections and that in reverse order of development, the "brains" disappear; first the higher order neocortex then the emotional, judgement, experience limbic, leaving the primitive reptilian.

But if this is true, why one moment does Gregory seem so primitive and the next moment he will lean in and say, "I want a kiss," while puckering his lips. Or out of the clear blue he will smile and say, "You are good to me," or "I love you," or "Let me tell you something!"

When asked, "Do you want a drink of water?" and he says "Yes," you lift the glass to his lips and he drinks. While most of the time his brain cannot direct his arms to do something, sometimes he will pick up the glass of water on the table and take a drink on his own.

The other day I started by saying, "I need to talk to you." And he gave me his attention and focus (which is usually hard for him.) I apologized for those times in the past, in the early stages of the disease when I was not always nice to him, or I was mean or angry or hurtful. He got sad with me and said, "I am sorry." I replied, "Yes it was very difficult for both of us," and he agreed saying "I know."

The way he presents himself often seems like so much more, like he is so present, as if a light briefly has gone back on, like Gregory is Gregory once again. So many of our interactions defy explanation, are mysterious and amazing when they happen, and are a delight to behold and enjoy, whatever the reason or level.

• • •

Another question I had was about Gregory's mumbling level of language. In the past he would try to tell you something but could not get the words out or organize his thoughts before the idea passed and he would get very frustrated. Now he babbles and mumbles and thinks he is talking. 

His intonations, raising and falling sounds, intensity, pinched forehead, smile followed by a laugh, pointing of his finger, would seem to indicate that he is telling you something that makes sense to him but that doesn't come out in a way that makes sense to you. Dr. B explained it as Broca's Aphasia. 

Here comes the scientific, medical explanation taken from Wikipedia. Patients with expressive aphasia, also known as Broca's aphasia, are individuals who know "what they want to say, they just cannot get it out". This specific group of symptoms distinguishes those who have expressive aphasia from individuals with other types of aphasia. 

This is where Gregory was maybe two or three years ago. Gregory seems to have more than one type.

There are several distinct "types" of aphasia, and each type is characterized by a different set of language deficits. Although those who have expressive aphasia tend to retain good spoken language comprehension, other types of aphasia can render patients completely unable to understand any language at all, whereas still other types preserve language comprehension, but with deficits. 

Gregory's "speaking" aphasia is probably the latter. He is able to understand language somewhat but with deficits.

Although individuals with expressive aphasia tend to have a good ability to self-monitor their language output (they "hear what they say" and make corrections), other types of aphasics can seem entirely unaware of their language deficit and therefor the babbling. 

This is where Dr. B thinks Gregory might be for the most part. I would guess that sometimes the babbling is just playful noise making like humming or singing. Other times Gregory thinks he is communicating and seeks confirmation from the listener. "Really?" he will say. "Of course," I say. Or "I know what you mean." Or I repeat a word  that he used that wasn't babble to show I am listening. 

An example of "listening" aphasia is: "A bird in the hand is worth two in the bush." Gregory only hears something about birds. The details are not clear and certainly the expression isn't formed that having at least one bird in your hand is better than the high likelihood that the birds will fly off when you try to grab them from the bush leaving you with no birds.

• • •

Life expectancy  was also discussed. Research says that people with Young Onset Alzheimer's have a life expectancy of seven years after diagnosis (allowing for the fact that it most likely began much earlier) while regular Alzheimer's averages ten to fifteen years. 

Gregory has already outlived the research as he enters 11+ years since diagnosis. One must remember that the research quotes the average, median, and mean of years. Gregory is so robustly healthy and was so robustly intelligent, that he is probably at the high end and could go on for a long time to come.

What does happen as the disease progresses is that the person has more and more difficulty swallowing which can cause aspiration causing pneumonia, is unable to let you know about problems and pain so medical difficulties are not discovered until later when they become more complicated and life threatening, becomes bedridden causing lung problems and pneumonia as well as skin breakdown and infection. These are often the cause of death in people with Young Onset Alzheimer's.

• • •

So now what? Understand him. Be better able to make decisions on Gregory's behalf. Empathize more. Continue to try everything. Withhold expectations. Try things again if they didn't work before. Stimulate, entertain, give snacks and treats, read aloud, listen to music, watch TV and DVDs, go for "walks" around the unit in his wheelchair, talk to him, sing to him, pet him, go outside in nice weather, massage his back, keep him clean, prevent his skin from getting dry, brush his teeth, manicure his nails, advocate for him, double check his doctor visits, monitor visits by foot doctor and eye doctor, buy his favorite foods, bake a fruit pie now and then. In other words do everything you can to help him be as happy, content, and healthy as possible.

but above all ...

LOVE HIM and make sure you hug and kiss and tell him you love him and let him know as often as you can and as clearly as you can that you are there for him, no matter what. No matter what may happen.


  1. Michael,
    As I wrote the day I met you, your thoughts are gentle, compassionate, and generous.

    I would add that your writing is also educational--not just in the sense of sharing information, but as a model of how to be.


  2. Thank you
    You are love


  3. Very thoughtful and informative update. I love how you dig deep and share. My soul responds deeply and I send my love and support silently all the time.

    1. Thanks Cheryl. We appreciate all the silent and well as in person support that you give Gregory and me. Our loves goes back a long, long way!

  4. Thank you for this, Michael.

    1. Thank you Esther for your kind words. Hope all is well with you and yours.

  5. This is a very special post, I hope you create a book out of your experiences because they are important to many people.
    Pedro Macedo Camacho

    1. Thanks to you Pedro. We have yet to meet but if you are anything like your music, I love you! Thanks for being part of this.

  6. You have such a fluid way of expressing yourself....this is an excellent post. I got more information and advice from this than all the many articles I have read put together!
    Liz Taylor

    1. Liz, Thank you for your very kind words and following my blog. Hopefully one day we will be on stage again together at the Lyric Opera of Chicago!

  7. I adore the pic of you and Gregory.
    Lauren Berger McCormick

  8. Love you both - more every day.
    Renee Maire Breitbach

  9. Wow so informative, as well as a loving tribute to someone you love! I fondly remember seeing Gregory at the opera with you as well as the opening of your miniatures. Such a sweet man! You are truly devoted! I love that! That's what love and marriage is all about!
    Scott Foreman-Orr

  10. Thank you for sharing your journey with us. You continue to inspire me. Blessings to you and Gregory.
    Linda Sewell

  11. Your blogs about Gregory are very well written and informative!
    George Berger

  12. Thank you for your easy to understand explanations. As you know it isn't easy for me to get to your part of the world and sit with my favorite Uncle. I love you Michael for being such a good man and taking such good care of Greg.
    Danielle Maire

    1. Thanks for your loving, supportive words. While you cannot get to visit your support is felt! Love to Danielle.

  13. Michael I'm so sorry you are going through this. You wrote this like the educator you still are, but also out of a tender heart. Ps. 34:18 says The Lord is close to the brokenhearted and saves those who are crushed in spirit. I pray you are leaning on Him during those down times. When a loved one is ill over a lengthy time like this, we do grieve the person they were before. It doesn't wait until their life end for grieving to start. It's okay to grieve.



    1. Pam, Thank you so much for your kind thoughts on many levels. Believe me, I grieve! P.S. Hold many fond memories of our times together in the past. Take care.

  14. Michael,

    Thank you for sharing! Like the rest of your blog, this is beautiful and touching. I appreciated your inclusion of definitions and sources, as well as your concluding thoughts. As you mentioned, empathizing and continually working to try to understand Greg's perspective and feelings is incredibly important. No one knows this better than you.

    I hope you (and Emma and Gigi and everyone at Lieberman) have been well.

    Much love and appreciation,
    Amanda Le

    1. Amanda, Thank for your comments they mean a lot to me. And thanks so for being part of the Documentary Crew who helped us put our love first and the Alzheimer's behind that.

  15. You and Gregory continue to teach me about love and generosity and commitment, about compassion and caring. You and Gregory teach me how to be deliberate and to be in the moment. You give voice to the voiceless. I love you.

    1. Jan, Your comments overwhelm me with joy and love. Both Gregory and I are so grateful that you and Jake are part of our life!


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